tag:blogger.com,1999:blog-22868084988637989382024-03-13T22:26:05.512-04:00Eos Mom - Life With Eosinophilic EsophagitisI am the mother of a child with Eosinophilic Esophagitis (EoE), a disorder which causes the body to adversely react to foods, treating them like an invader and causing damage to the esophagus. I started this blog in hopes of sharing our experiences and what we have learned along the way. Hopefully it will benefit others who are going through similar situations. EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.comBlogger40125tag:blogger.com,1999:blog-2286808498863798938.post-61256848665214395062016-08-22T08:23:00.000-04:002016-08-22T23:17:20.795-04:00The US Dept of Education's new "Dear Colleague Letter" Addressing ADHD<div class="tr_bq">
There is a new "Dear Colleague Letter" that was issued by the US Dept of Education on 7/26/2016, which specifically addresses ADHD and the obligations of school districts to evaluate and provide appropriate related aids and services. This is, in my opinion, a very important letter to get out there because many districts are refusing to evaluate students, as confirmed in the letter. A link to the PDF copy of the letter and Resource Guide (42 pages in total) is below. It should also be made clear and kept in mind that parents of the student are members of the child study team.</div>
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<a href="http://www2.ed.gov/about/offices/list/ocr/letters/colleague-201607-504-adhd.pdf">http://www2.ed.gov/about/offices/list/ocr/letters/colleague-201607-504-adhd.pdf</a><br />
<br />
Excerpt:<br />
<blockquote class="tr_bq">
"The failure to provide needed services to students with disabilities can result in serious social, emotional, and educational harm to the students involved. It can also unnecessarily drain school district and family resources if the school is ineffectually attempting to meet the needs of students with disabilities through failed interventions or disciplinary consequences. </blockquote>
<blockquote class="tr_bq">
<b>As outlined in the Department’s regulations implementing Section 504, school districts must conduct individualized evaluations of students who, because of disability, including ADHD, need or are believed to need special education or related services, and must ensure that qualified students with disabilities receive appropriate services that are based on specific needs, not cost, and not based on stereotypes or generalized misunderstanding of a disability. These and other Section 504 obligations apply to all students with disabilities and are discussed in this guidance as they specifically pertain to students with ADHD."</b> </blockquote>
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I also believe it is important to reference the 4/17/15 Dear Colleague Letter, as well as the other 2 prior letters referenced in same ("Letter to Delisle" from 12/2013 and "Letter to Anonymous" from 1/2010), which address children with both disabilities and high cognition ("Twice Exceptional"). Intelligence is also used as an excuse not to evaluate, although it is not a valid one.<br />
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<a href="http://www2.ed.gov/policy/speced/guid/idea/memosdcltrs/041715gilmantwiceevceptional2q2015.pdf">http://www2.ed.gov/policy/speced/guid/idea/memosdcltrs/041715gilmantwiceevceptional2q2015.pdf</a><br />
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Excerpt:<br />
<blockquote class="tr_bq">
"I am writing to draw your attention to the Office of Special Education Programs’ (OSEP) December 20, 2013 letter to Dr. Jim Delisle (Letter to Delisle) regarding determining eligibility for special education and related services under the Individuals with Disabilities Education Act (IDEA) for children with disabilities with high cognition; students who Dr. Delisle terms “twice exceptional students” or “2E students.” Letter to Delisle pointedly addresses children with high cognition who may be eligible for special education and related services as a student with a specific learning disability, but also cites to the broader requirements in 34 CFR §300.304(b)(1) and (2) that state, in part – </blockquote>
<blockquote class="tr_bq">
<span style="font-family: inherit;"> … in determining whether a child has a disability … the IDEA requires the use of a variety of assessment tools and strategies to gather relevant functional, developmental, and academic information about the child, and prohibits the use of any single measure or assessment as the sole criterion for determining whether a child is a child with a disability and for determining an appropriate educational program for the child.” </span></blockquote>
<blockquote class="tr_bq">
<b>In spite of the guidance provided in Letter to Delisle, we continue to receive letters from those who work with children with disabilities with high cognition, particularly those with emotional disturbance or mental illness, expressing concern that some local educational agencies (LEA) are hesitant to conduct initial evaluations to determine eligibility for special education and related services for children with high cognition.
</b></blockquote>
<blockquote class="tr_bq">
<b>In transmitting OSEP Memo 15-08, I am requesting that you widely distribute Letter to Delisle to the LEAs in your State, and remind each LEA of its obligation to evaluate all children, regardless of cognitive skills, suspected of having one of the 13 disabilities outlined in 34 CFR §300.8"</b> </blockquote>
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The 12/2013 "Letter to Delisle," which is referenced in the 4/2015 letter, is located here: <a href="http://www2.ed.gov/policy/speced/guid/idea/memosdcltrs/13-008520r-sc-delisle-twiceexceptional.pdf">http://www2.ed.gov/policy/speced/guid/idea/memosdcltrs/13-008520r-sc-delisle-twiceexceptional.pdf</a><br />
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The US DOE has the two letters (4/2015 and 12/2013) together in one document here: <a href="http://www2.ed.gov/policy/speced/guid/idea/memosdcltrs/041715osepmemo15-082q2015.pdf">http://www2.ed.gov/policy/speced/guid/idea/memosdcltrs/041715osepmemo15-082q2015.pdf</a><br />
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Information about the 1/2010 Letter to Anonymous is located here: <a href="http://www.flspedlaw.com/letter_to_anonymous.pdf">http://www.flspedlaw.com/letter_to_anonymous.pdf</a><br />
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The difficult-to-locate DOE copy is here: <a href="http://www2.ed.gov/policy/speced/guid/idea/letters/2010-1/redacteda011310eval1q2010.pdf">http://www2.ed.gov/policy/speced/guid/idea/letters/2010-1/redacteda011310eval1q2010.pdf</a><br />
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The specific sentence in the 1/2010 letter that I really want to draw attention to is this:
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<blockquote class="tr_bq">
<b>"For example, a child with high cognition and ADHD could be considered to have an 'other health impairment,' and could need special education and related services to address the lack of organizational skills, homework completion and classroom behavior, if appropriate."</b></blockquote>
Excerpt:<br />
<blockquote>
"In your letter dated October 8, 2009, you specifically referenced students with high cognition and disabilities such as Attention Deficit Hyperactivity Disorder (ADHD), Asperger's Syndrome, and specific learning disabilities related to reading, writing, and mathematics who struggle to timely complete grade-level work and have difficulties with organizational skills, homework completion, affective areas, social skills, classroom behavior, reading and math fluency, writing and math
operations.</blockquote>
<blockquote>
The IDEA is silent regarding "twice exceptional" or "gifted" students. <b>It remains the Department's position that students who have high cognition, have disabilities and require special education and related services are protected under the IDEA and its implementing regulations.</b> <b>Under 34 C.F.R. §300.8, a child must meet a two-prong test to be considered an eligible child with a disability: (1) have one of the specified impairments (disabilities); and (2) because of the impairment, need special education and related services. For example, a child with high cognition and ADHD could be considered to have an 'other health impairment,' and could need special education and related services to address the lack of organizational skills, homework completion and classroom behavior, if appropriate.</b> Likewise, a child with Asperger's Syndrome could be considered under the disability category of autism and the individualized evaluation would address the special education and related services needs in the affective areas, social skills and classroom behavior, as appropriate."</blockquote>
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One would hope that districts would go back and review previous denials when letters such as these are issued, but it is up to the parents to request evaluations if the student is thought to be eligible, even if prior requests have been erroneously denied. EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com0tag:blogger.com,1999:blog-2286808498863798938.post-18743818222019187312016-08-22T08:07:00.002-04:002016-08-22T09:00:16.758-04:00I have not written in a long time. My son's EoE is under control with medication and he is now an adult, so I doubt I will be posting too much more, if anything, regarding any new personal experiences. I may, from time-to-time, mention new information, but for the most part, I am no longer as involved in the eosinophilic community, so I may not be timely in those posts. I will, however, post other information that I find important, which may also apply to those in the eosinophilic community, as well as others. EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com0tag:blogger.com,1999:blog-2286808498863798938.post-17044015321005368652012-10-02T11:56:00.001-04:002012-10-06T09:41:27.570-04:00Upcoming CURED / Cincinnati Children's Eosinophilic Patient Education and Research ConferenceCURED (Campaign Urging Research for Eosinophilic Disorders) and Cincinnati Children's Hospital are co-hosting a <a href="http://www.curedfoundation.org/docs/2012CUREDEGIDConferenceFlyer.pdf">patient education and research conference</a> on November 2nd - 4th, 2012 for physicians, scientists, nurses, social workers, medical care team members, patients and families, regarding diagnosis, therapy, psycho/social aspects and the science of eosinophilic disorders. <br />
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The purpose of the conference is "to share and gain knowledge in the emerging field of Eosinophilic Gastrointestinal Disorders (EGID), including eosinophilic esophagitis". <br />
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The conference will take place at the Main Campus of Cincinnati Children's Hospital (<a href="http://www.cincinnatichildrens.org/patients/visit/directions/burnet/default/">Burnet Campus</a>) at 3333 Burnet Ave, Cincinnati, OH.<br />
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According to the <a href="http://curedfoundation.org/site/">CURED website</a>, the conference objectives are as follows:<br />
<ol>
<li>Present updates on the diagnostic criteria for eosinophilic disorders</li>
<li>Discuss the latest research advances in eosinophilic disorders and their application to patient care</li>
<li>Discuss the psycho/social factors faced by families and patients and how to apply to better disease management</li>
<li>Enumerate Therapeutic options and resources for patients who have EGID</li>
</ol>
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<br /></div>
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<a href="http://www.curedfoundation.org/docs/2012_speakers.pdf">Please click here for a pdf document listing the speakers and their affiliations.</a></div>
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The <a href="http://www.curedfoundation.org/docs/2012ConferenceRegistration.pdf">registration form</a> lists the conference agenda, which is as follows: </div>
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<b><br /></b></div>
<div>
<b>Friday, November 2, 2012 </b></div>
<div>
<ul>
<li>8 am - 5:30 pm - Research and continuing education seminar for (ages 13 and older only). Childcare arrangements will be made for children 12 and under. CME credit is available for this seminar.</li>
</ul>
</div>
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<br /></div>
<div>
<b>Saturday, November 3, 2012 </b></div>
<div>
<ul>
<li>8 am - 5:15 pm - Patient education conference. The conference will include lectures by those involved in GI, allergy, psychology, nutrition and more. </li>
<li>7:30 - 9:30 - Meet and Greet at the Radisson Hotel Cincinnati Riverfront (different location than the conference).</li>
</ul>
</div>
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<br /></div>
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<b>Sunday, November 4, 2012</b> </div>
<div>
<ul>
<li>9 am Continental Breakfast and Lecture by Dr Marc Rothenberg</li>
</ul>
</div>
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<br /></div>
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If you would like to register for the conference, the <a href="http://www.curedfoundation.org/docs/2012ConferenceRegistration.pdf">registration form</a> (which also lists the conference fees) and an option to <a href="http://www.e-junkie.com/ecom/gb.php?c=cart;i=2012PatientConference;cl=124700;ejc=2">pay the conference fees online</a> are available via the <a href="http://curedfoundation.org/site/">CURED website</a>. </div>
EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com0tag:blogger.com,1999:blog-2286808498863798938.post-51078649007006328152012-09-24T08:15:00.000-04:002012-09-24T08:17:05.203-04:00Proposed Pennsylvania Infant and Children's Health Initiative ActI am using today’s blog post to pass along an important plea for assistance from PA residents to help get important legislation passed.<br />
<br />
URGENT REQUEST FOR PA FRIENDS & FAMILIES
DEALING WITH EOSINOPHILIC ESOPHAGITIS:<br />
<br />
PA State Representative Dan Truitt has introduced a bill, the “PA Infant and Children's Health Initiative Act”, within the PA state legislature. This legislation would mandate that insurance companies cover the cost of elemental formula, an amino acid-based formula with no intact food proteins. Families dealing with Eosinophilic Esophagitis (EoE) and other Eosinophilic Gastrointestinal Disorders (EGID) will understand how HUGE this is.<br />
<br />
Many people with this disease react to so many foods that they can eat little to nothing and rely on this formula to keep them healthy. Since there is nothing in it for those with EoE / EGID to react to, use of this formula allows the GI tract to heal while also providing the patients (primarily children) with the nutrition they need. Some patients are able to drink it, although the taste makes it very difficult to do so. Some patients need enteral feeding tubes for the same formula. Unfortunately, many insurance companies do not cover the cost of this formula. For many families, the monthly cost of elemental formula can be equivalent to a mortgage payment.<br />
<br />
This bill will mandate insurance companies to cover this for PA residents. I urge you, whether you have a child with an Eosinophilic Gastrointestinal Disorder or not, PLEASE CONTACT your local representative and urge him or her to please co-sponsor this bill. You can find your representative's contact info here: <a href="http://www.legis.state.pa.us/">www.legis.state.pa.us </a><br />
<br />
Please, share this information and send this request to your family and friends. There is only a week to find 7 additional PA representatives to co-sponsor so this bill will move along to the state senate. Below is a sample of a letter that you can use to write to your state representative. If you do choose to get involved, those of us in the Eosinophilic Community (patients and their families) thank you very much.<br />
<br />
Dear (insert the name of your representative):<br />
<br />
I urge you to support the PA Infant and Children's Health Initiative Act, introduced by State Representative Dan Truitt, providing coverage and reimbursement for amino acid/elemental based formulas regardless of delivery method. Amino acid/Elemental formula is the most effective treatment as proven by medical research. Insurance coverage will have a direct and immediate impact on improving the quality of life of families living in the Commonwealth of Pennsylvania.<br />
<br />
Thank you for supporting our family and helping all children living with these debilitating diseases.<br />
<br />
(or Thank you for supporting families who suffer from these debilitating diseases.)EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com0tag:blogger.com,1999:blog-2286808498863798938.post-17564745810673549972012-08-21T10:38:00.000-04:002012-08-21T10:38:30.046-04:00Important New Educational Advocacy Resources for the Eosinophilic Community<br />
Many of us struggle as we advocate for our children in school, trying to make sure they have appropriate modifications and accommodations as needed for their Eosinophil-Associated Gastrointestinal Disorder (Eosinophilic Esophagitis and other EGIDs) and receive a <a href="http://www2.ed.gov/about/offices/list/ocr/docs/edlite-FAPE504.html"><b><span style="color: purple;">Free Appropriate Public Education (FAPE)</span></b></a> according to the law. For many parents, it's overwhelming and we may not even know where to start. We might say something like "I don't want to rock the boat at the school but I want to make sure my child is safe and isn't left out." We also might ask:<br />
<br />
<ul>
<li>"What is a <b><a href="http://www.wrightslaw.com/info/sec504.index.htm"><span style="color: purple;">504 Plan</span></a>?</b></li>
<li>"What is an <a href="http://www.wrightslaw.com/info/iep.faqs.htm" style="color: purple; font-weight: bold;">IEP</a>?" </li>
<li>"Which one do we need or <b><a href="http://www.wrightslaw.com/blog/?p=122"><span style="color: purple;">do we need both</span></a></b>?" </li>
<li>"<b><a href="http://www.spannj.org/Family2Family/individual_health_plan.htm"><span style="color: purple;">What is an IHP?</span></a></b>" and "<a href="http://www.wrightslaw.com/blog/?p=3036"><b><span style="color: purple;">Why do we need one?</span></b></a>" </li>
</ul>
<br />
Years ago, I was one such parent and it took far too long to figure it out on my own. Thankfully, there are new resources available to assist parents with educational advocacy.<br />
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Just in time for the new 2012 school year, APFED has added very helpful <a href="http://apfed.org/drupal/drupal/webinars_and_videos" target="_blank"><b><span style="color: purple;">videos/webinars</span></b></a> to their website as well as their <a href="http://www.youtube.com/user/APFED/videos" target="_blank"><b><span style="color: purple;">YouTube channel</span></b></a> and will be adding more in the near future. Some of the available videos and webinars now include: </div>
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<ul>
<li><a href="http://youtu.be/_vB2wR7ORaE" target="_blank"><b><span style="color: purple;">“All About EoE”</span></b></a></li>
<li><a href="http://youtu.be/Uebf_0HgsVs" target="_blank">“<b><span style="color: purple;">How Do I Inform My Child’s School and What Do They Need To Know?”</span></b></a><b><span style="color: purple;"> </span></b></li>
<li><a href="http://youtu.be/Fql9RSANeFA" target="_blank"><b><span style="color: purple;">“What is Section 504 and How Does It Impact Sending a Child To School With an Eosinophilic Disorder?”</span></b></a></li>
<li><b><a href="http://youtu.be/e_Gc0AtLR4g"><span style="color: purple;">"What are the Most Important Things To Know About Advocating for My Child?"</span></a></b></li>
</ul>
<br />
APFED now also has a specific section for <a href="http://apfed.org/drupal/drupal/School%20Advocacy"><b><span style="color: purple;">School Advocacy</span></b></a>, which includes resources prepared by an educational advocate in Georgia who has experience helping parents obtain necessary modifications and accommodations for their children with Eosinophil-Associated Disorders (EoE / EGID):<br />
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<ul>
<li><a href="http://apfed.org/drupal/drupal/School_Advocacy_Overview" target="_blank"><b><span style="color: purple;">Overview</span></b></a></li>
<li><a href="http://apfed.org/drupal/drupal/Getting%20Started" target="_blank"><b><span style="color: purple;">Getting Started</span></b></a></li>
<li><a href="http://apfed.org/drupal/drupal/Section%20504%20Eligibility" target="_blank"><b><span style="color: purple;">Section 504 Eligibility</span></b></a></li>
<li><a href="http://apfed.org/drupal/drupal/IEP_Eligibility" target="_blank"><b><span style="color: purple;">IEP Eligibility</span></b></a></li>
<li><a href="http://apfed.org/drupal/drupal/Elementary%20School%20Accommodations" target="_blank"><b><span style="color: purple;">Elementary School Accommodations</span></b></a></li>
<li><a href="http://apfed.org/drupal/drupal/Middle%20and%20High%20School%20Accommodations" target="_blank"><b><span style="color: purple;">Middle School and High School Accommodations</span></b></a></li>
<li><b><span style="color: purple;"><a href="http://apfed.org/drupal/drupal/Postsecondary%20Schools" target="_blank"><span style="color: purple;">Post-Secondary School Accommodations</span></a> (College and Beyond)</span></b></li>
<li><a href="http://apfed.org/drupal/drupal/Frequently_Asked_Questions" target="_blank"><b><span style="color: purple;">Frequently Asked Questions</span></b></a></li>
<li><a href="http://apfed.org/drupal/drupal/Info%20for%20School%20Staff" target="_blank"><b><span style="color: purple;">Info For School Staff</span></b></a></li>
<li><b><span style="color: purple;"><a href="http://www.nhlbi.nih.gov/health/public/lung/asthma/guidfam.pdf" target="_blank"><span style="color: purple;">Guidelines for Students With Chronic Illnesses</span></a> (NIH resource)</span></b></li>
<li><a href="http://apfed.org/drupal/drupal/node/200" target="_blank"><b><span style="color: purple;">Templates and Forms (for 504 plans and IEPs)</span></b></a></li>
</ul>
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<div class="MsoNormal">
Please take time to visit each of the above helpful advocacy links if you are potentially in need of a 504 plan or IEP for your child with EoE / EGID.<br />
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<a href="http://www.foodallergy.org/"><span style="color: purple;"><b>FAAN</b></span></a> also has a new educational advocacy resource in the form of an Ask The Expert Q & A with Pete Wright of <a href="http://wrightslaw.com/"><b><span style="color: purple;">Wrightslaw</span></b></a>. While the majority of the information on the FAAN website is available to everyone, this particular web feature is only available to registered FAAN members at:<br />
<a href="http://www.foodallergy.org/page/july-august-2012---pete-wright-"><b><span style="color: purple;">http://www.foodallergy.org/page/july-august-2012---pete-wright-</span></b></a></div>
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<o:p>The <a href="http://www.njpaeos.org/" target="_blank"><b><span style="color: purple;">NJ/PA Eosinophilic Information</span></b></a> site </o:p>has recently been updated with additional links and resources, but more updates are coming soon. Please remember to visit the <a href="http://www.njpaeos.org/advocacy.html"><b><span style="color: purple;">Advocacy section</span></b></a> for additional educational advocacy information and resources or you could just click on the <a href="http://eosmom.blogspot.com/p/advocacy-info.html"><b><span style="color: purple;">Advocacy Info page</span></b></a> of this blog.<br /><br />Some of the resources that have just been added include:<br /><br /><b><a href="http://www2.ed.gov/about/offices/list/ocr/publications.html#Section504"><span style="color: purple;">Office of Civil Rights info about Section 504/ADA</span></a></b><br />
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<b><a href="http://www.wrightslaw.com/info/sec504.adaaa.htm"><span style="color: purple;">Americans With Disabilities Act Amendments Act of 2008</span></a></b>
(provides broader coverage)<br /><br />
<b><a href="http://www.wrightslaw.com/blog/?p=122"><span style="color: purple;">Does a Child Need an IEP AND a 504 plan?</span></a></b> The answer is “No”.<br />
<br /><b><a href="http://www.wrightslaw.com/blog/?p=3036"><span style="color: purple;">Migraines, Medication and Missed Instruction – Requesting Eligibility</span></a></b><br />This information can be applied to other medical issues, including
Eosinophil-Associated Gastrointestinal Disorders. There is also a template for a letter to the school, requesting an identification meeting.<br />
<br /><b>
SPAN (Statewide Parent Advocacy Network) of NJ:</b></div>
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<b><a href="http://spannj.org/BasicRights/"><span style="color: purple;">Basic Rights</span></a></b></div>
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<b><a href="http://spannj.org/BasicRights/what_is_iep.htm"><span style="color: purple;">What is an IEP?</span></a></b></div>
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<b><a href="http://www.spannj.org/Family2Family/individual_health_plan.htm"><span style="color: purple;">The Individual Health Plan (IHP)</span></a></b></div>
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<b><a href="http://spannj.org/information/Helping_Families_Navigate_the_Education_System.pdf"><span style="color: purple;">Helping Families Navigate the Education System</span></a> (pdf)</b></div>
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Please be sure to pass along any other new resources you might have that apply to those in the eosinophilic community! Your comments are always welcome!</div>
</div>
EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com1tag:blogger.com,1999:blog-2286808498863798938.post-56799109386162449192012-05-06T16:57:00.001-04:002012-05-06T23:10:23.070-04:00Interview about Eosinophilic Esophagitis on 93.3 WMMR in PhiladelphiaThank you,<a href="http://www.wmmr.com/shows/weekends/blogentry.aspx?BlogEntryID=10380251" target="_blank"><span style="color: purple;"> 93.3 WMMR</span></a> in Philadelphia, for doing a wonderful, detailed interview with <a href="http://www.chop.edu/doctors/spergel-jonathan.html" target="_blank"><span style="color: purple;">Dr. Jonathan Spergel</span></a> of Children's Hospital of Philadelphia and the Harris Family about Eosinophilic Esophagitis (EoE) and their upcoming fundraiser for <a href="http://www.chop.edu/service/center-for-pediatric-eosinophilic-disorders/home.html" target="_blank"><span style="color: purple;">The Center for Pediatric Eosinophilic Disorders</span></a> at CHOP. The Harris Family is doing a wonderful job of educating the public and raising awareness about eosinophilic gastrointestinal disorders!<br />
<br />
The interview can be heard at WMMR's website via the following link:<br />
<br />
<a href="http://www.wmmr.com/shows/weekends/blogentry.aspx?BlogEntryID=10380251#.T6bghJfqU9E.blogger"><span style="color: purple;">Public Affairs - Eosinophilic Esophagitis - Weekends Blog | 93.3 WMMR: Everything That Rocks</span></a><br />
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The fundraiser, <a href="http://www.foodphight5k.com/" target="_blank"><span style="color: purple;">"Food Phight 5K"</span></a>, will be held on Friday, May 18th, 2012 at 2 North High Street in West Chester, PA. Registration begins at 6 pm. More information about the fundraiser can be found at <a href="http://www.foodphight5k.com/"><span style="color: purple;">www.foodphight5k.com</span></a> or <span style="color: purple;"><a href="http://giving.chop.edu/site/TR?fr_id=1380&pg=entry">http://giving.chop.edu/site/TR?fr_id=1380&pg=entry</a></span><br />
<br />
From the fundraiser's page on CHOP's website: "CHOP's Center for Pediatric Eosinophilic Disorders currently treats 1100 infants, children and teenagers with an eosinophilic disease - the largest clinical population in the world. Patients come from all over the U.S. This clinical population provides an extensive source of data for research. <br />
<br />
Currently, CHOP is leading 11 different research studies related to eosinophilic diseases and they are collaborating with other world class institutions. These advances offer high hopes for children who are suffering. However, ongoing research costs a lot of money. That's why we need your help."<br />
<br />
I am also the parent of a child who is treated by specialists at CHOP's Center for Pediatric Eosinophilic Disorders and I have been very involved in the eosinophilic community for 8 years. I can personally attest to CHOP's devotion to their patients and to research. Please consider donating.EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com1tag:blogger.com,1999:blog-2286808498863798938.post-15589755488719750282012-05-04T21:42:00.000-04:002012-05-05T07:03:21.969-04:00The G-tube is out!I wanted to write a quick update with some big news: Tonight, after 7 years, my son's G-tube is finally out! <br />
<br />
He has been back on Flovent for a month with an unlimited diet and is doing well. He had lost too much weight when he was back on his safe diet at the beginning of the year, so I was not sure that it was a good idea to remove it yet. However, with the Flovent (swallowed, not inhaled), he is eating well, gaining the weight back and is growing again. <br />
<br />
At his last appt (2 days ago), he had gained 6 lbs and grew another inch, so I knew it was the right time. I want him to heal before the summer, and it can take 3 weeks for the stoma to close, which will take us to the end of May. <br />
<br />
I didn't give him any advance-notice because that would have made him too anxious. He was anxious enough as it was. I just told him it had to get done and I did it. The stoma is clean and covered and hopefully it will close up quickly.<br />
<br />
While I didn't make a big deal about it because he was so nervous, this is a very big deal! I had envisioned a big celebration when it happened, so it is a bit anti-climactic, but that's ok. That part of his life is now behind him and he has a new chapter waiting to be written. <br />
<br />
He only has a few more foods to trial, so we're going to do one a year. We'll start in January and scope in April, just before his birthday, as we did this year. That will give him a break from his Flovent and allow him to finish the remainder of his food trials while minimizing his procedures. <br />
<br />
For now, while he is on the swallowed Flovent and it is working, he can eat anything he wants, so I am focusing on increasing his intake as well as expanding his repertoire. So far, I am very pleased with how well he is doing and I hope he continues to do well. He has overcome great hurdles and is now thriving. There is finally some semblance of normalcy. I am a very happy mom.EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com2tag:blogger.com,1999:blog-2286808498863798938.post-34002619377809260402012-04-20T15:50:00.000-04:002012-04-20T15:57:48.246-04:00CHOP Food Allergy Education Event May 5, 2012<div>
<span style="background-attachment: initial; background-clip: initial; background-color: #d9d2e9; background-image: initial; background-origin: initial; color: #5501d1; font-family: Verdana, sans-serif; font-size: 10pt;"><br /></span></div>
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<span style="background-attachment: initial; background-clip: initial; background-color: #d9d2e9; background-image: initial; background-origin: initial; color: #5501d1; font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">Here is
another CHOP event for people dealing with food allergies of any kind: </span><br />
<span style="background-attachment: initial; background-clip: initial; background-color: #d9d2e9; background-image: initial; background-origin: initial;"><a href="http://www.njpaeos.org/index_files/Invitation_CHOP-May_5th_Food_Allergy_Education_Event.pdf" style="cursor: pointer;" target="_blank"><b><span style="text-decoration: none;"><span style="color: purple; font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">http://www.njpaeos.org/index_files/Invitation_CHOP-May_5th_Food_Allergy_Education_Event.pdf</span></span></b></a></span><br />
<ul>
</ul>
<span style="background-color: #d9d2e9; font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial;">
<br /><span style="color: #5501d1;">
I just found the invitation in my inbox and am late in passing it al</span><span class="textexposedshow" style="color: #5501d1;">ong. This is in addition to the other May 7th event I
previously mentioned (see the other post from today). Both will be equally
educational. I have updated the</span><span class="apple-converted-space" style="color: #5501d1;"> </span><span class="textexposedshow" style="color: #5501d1;"><a href="http://njpaeos.org/"><b><span style="color: #5501d1;">njpaeos.org</span></b></a></span><span class="apple-converted-space" style="color: #5501d1;"> </span><span class="textexposedshow" style="color: #5501d1;">website
accordingly, so you can find the info and flyer there if you are interested.</span><br />
<br />
<span class="textexposedshow" style="color: #5501d1;">I have been advised that this event is intended
more for adults and is for food allergies in general, not only EoE/EGID
(although Eosinophilic Disorders and FPIES will also be discussed). Many of us
and/or our family members also deal with "normal" food allergies.
Please RSVP by April 28th. The information is on the website and the flyer is
linked above. </span></span><span style="color: #5501d1;"><o:p></o:p></span></span><br />
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<span style="background-color: #d9d2e9; font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"><span class="textexposedshow"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; color: #5501d1;">Here is the
info: </span></span><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial;"><br />
<br />
<span class="textexposedshow" style="color: #5501d1;"><b>The Children’s Hospital of Philadelphia Food
Allergy Center Family Committee and Physicians cordially invite you to attend</b>:</span><br />
<br />
<span class="textexposedshow" style="color: #5501d1;">An educational morning to highlight and celebrate
the exciting developments and current advancements that CHOP Food Allergy is
making for families living with food allergies.</span><br />
<br />
<span class="textexposedshow" style="color: #5501d1;">During this event we look forward to:</span><br />
</span></span></div>
<ul>
<li><span style="color: #5501d1; font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">Sharing the newest developments and research for
Immunoglobulin E (IgE)-mediated food allergy, Eosinophillic Disorders and Food
Protein-Induced Enterocolitis (FPIES).</span></li>
<li><span style="color: #5501d1; font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">Featuring key-note speakers: Rushani Saltzman,
MD; Elia Tait-Wojno, Ph.D.; and Mei-Lun Wang, M.D. Dedicated CHOP researchers
working together to eradicate food allergic conditions: Jonathan Spergel, MD
Ph.D; Terri Brown-Whitehorn, MD; Antonella Cianferoni, M.D., Ph.D.; David
Artis, Ph.D.; Paulette M Devine, RN, AE-C; Megan Ott, CPNP and Pamela Scott-Bey
M.A. will also be in attendance.</span></li>
<li><span style="color: #5501d1; font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">Learning inspiring personal accounts, compelling
life management stories & firsthand experience after life changing clinical
interventions - all from fellow CHOP families with children with food allergic conditions.</span></li>
</ul>
<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"><br />
<span class="textexposedshow" style="color: #5501d1;"><b>Event Details:</b></span><b style="color: #5501d1;"><br />
<span class="textexposedshow">When:</span></b><span class="apple-converted-space" style="color: #5501d1;"> </span><span class="textexposedshow" style="color: #5501d1;">Saturday, May 5th from 10:00am-12:30pm</span><br />
<span class="textexposedshow" style="color: #5501d1;"><b>Where:</b></span><span class="apple-converted-space" style="color: #5501d1;"> </span><span class="textexposedshow" style="color: #5501d1;">Colket Translational Research Building - Room 1200 A & B</span><br />
<span class="textexposedshow" style="color: #5501d1;">3501 Civic Center Boulevard, Philadelphia, PA 19104</span><br />
<span class="textexposedshow" style="color: #5501d1;">Parking Located Under Wood Building. Courtesy
Passes Provided</span><br />
<br />
<span class="textexposedshow"><span style="color: #5501d1;">There is no cost to attend the event, but CHOP
gratefully welcomes all donations at the door or at: </span><span style="color: purple;"><a href="http://www.giving.chop.edu/"><b><span style="color: purple;">www.giving.chop.edu</span></b></a> </span></span><span class="textexposedshow" style="color: #5501d1;">(**Please
be sure to specify FOOD ALLERGY)</span><br />
<span class="textexposedshow" style="color: #5501d1;">Donations will be directed towards the CHOP Food
Allergy Center’s initiatives. </span><br />
<br />
<span class="textexposedshow" style="color: #cc0000;"><b>Bring your expired Epi-Pens! There will be a
demonstration on proper use and disposal of Epi-Pens.</b></span><br />
<br />
<span class="textexposedshow" style="color: #5501d1;">"The mission of the Food Allergy Center is to
be the leader in recognizing, managing and treating the full spectrum of food
allergies. We strive to achieve this through groundbreaking research, full use
of CHOP’s operational expertise and resources, and our passion for improving
children’s lives with optimal, personalized care. We are honored to offer this
Food Allergy Education Day as the first of a series of events to follow."</span><br />
<br />
<span class="textexposedshow" style="color: #5501d1;">To</span><span class="apple-converted-space" style="color: #5501d1;"> </span><span class="textexposedshow" style="color: #5501d1;"><b>RSVP</b>, please email:</span><span class="apple-converted-space" style="color: #5501d1;"> </span><span class="textexposedshow"><b><span style="color: purple;"><a href="mailto:Familyday@email.chop.edu"><span style="color: purple;">Familyday@email.chop.edu</span></a> </span></b></span><br />
<span class="textexposedshow" style="color: #5501d1;"><b>and please provide the following</b>: Your name,
your mailing and email address and number of attendees. Space is limited.</span><br />
<br />
<span class="textexposedshow" style="color: #5501d1;">Please note: this event is not suitable for young
children due to the format of the event.</span><br />
<br />
<span class="textexposedshow" style="color: #5501d1;">If you have any questions, please call (215)
590-2549.</span><br />
<span class="textexposedshow"><b><span style="color: #cc0000;">Please RSVP no later: April 28th</span></b><span style="color: #5501d1;">.</span></span></span><span style="color: #5501d1; font-size: 13.5pt;"><o:p></o:p></span><br />
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<br /></div>EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com0tag:blogger.com,1999:blog-2286808498863798938.post-56916622354618464202012-04-20T11:01:00.001-04:002012-04-20T11:03:32.493-04:00Upcoming Lecture at CHOP about Eosinophilic Esophagitis<br />
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<b><span style="color: purple; font-family: 'Trebuchet MS', sans-serif;"><span style="background-color: #d9d2e9;"><a href="http://www.blogger.com/goog_331456243">CHOP's Distinguished Speaker Series, </a></span></span></b></div>
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<b><span style="color: purple; font-family: 'Trebuchet MS', sans-serif;"><a href="http://njpaeos.org/index_files/Advances%20EoE.pdf" target="_blank">"Food Allergy in the Esophagus: When it Hurts to Eat"</a></span></b></div>
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<b style="font-family: 'Times New Roman', serif;"><span style="font-family: Calibri, sans-serif; font-size: 11pt;"><span style="color: #5501d1;">On Monday, May 7th from 6:30-8:30 pm, </span><a href="http://www.chop.edu/doctors/spergel-jonathan.html" target="_blank"><span style="color: purple;">Dr. Jonathan <span class="SpellE">Spergel</span> </span></a><span style="color: #5501d1;">will present "Food Allergy In the Esophagus: When it hurts to Eat" at CHOP in the Leonard and </span><span class="SpellE" style="color: #5501d1;">Madlyn</span><span style="color: #5501d1;"> Abramson Pediatric Research Center, Osler Circle, Philadelphia. </span></span></b></div>
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<b><span style="font-family: Calibri, sans-serif; font-size: 11pt;"><span style="color: #5501d1;">Dr. </span><span class="SpellE" style="color: #5501d1;">Spergel</span><span style="color: #5501d1;">, co-director of the </span><a href="http://www.chop.edu/service/center-for-pediatric-eosinophilic-disorders/home.html" target="_blank"><span style="color: purple;">Center for Pediatric Eosinophilic Disorders</span></a><span style="color: #5501d1;">, and his team will present the “state of the union” on eosinophilic diseases, as well as discuss research initiatives that are underway.<o:p></o:p></span></span></b></div>
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<b><span style="color: #5501d1; font-family: Calibri, sans-serif; font-size: 11pt;">Did you know CHOP is collaborating with 11 other research institutions! And that Dr. <span class="SpellE">Spergel </span>wrote a piece of legislation requiring the NIH to fund eosinophilic research and it was passed? Invite your family, friends, teachers, coaches, local media and anyone in your support network to help not only spread awareness, but hope.<o:p></o:p></span></b></div>
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<b><span style="color: #5501d1; font-family: Calibri, sans-serif; font-size: 11pt;">This is <u>not</u> a fundraising event.<o:p></o:p></span></b></div>
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<b><span style="color: #5501d1; font-family: Calibri, sans-serif; font-size: 11pt;"><br /></span></b></div>
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<b><span style="color: #5501d1; font-family: Calibri, sans-serif; font-size: 11pt;">Please R.S.V.P. by Wednesday, May 2 to </span></b><b><span style="color: purple; font-family: Calibri, sans-serif; font-size: 11pt;"><a href="mailto:busch@email.chop.edu" style="color: blue;"><span style="color: purple;">busch@email.chop.edu</span></a></span></b><b><span style="color: #5501d1; font-family: Calibri, sans-serif; font-size: 11pt;">.<o:p></o:p></span></b></div>
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<b><span style="color: #5501d1; font-family: Calibri, sans-serif; font-size: 11pt;">Business Attire.<o:p></o:p></span></b></div>
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<b><span style="color: #5501d1; font-family: Calibri, sans-serif; font-size: 11pt;"><br /></span></b></div>
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<b><span style="color: #5501d1; font-family: Calibri, sans-serif; font-size: 11pt;">Please click </span></b><b><span style="color: purple; font-family: Calibri, sans-serif; font-size: 11pt;"><a href="http://njpaeos.org/index_files/Advances%20EoE.pdf" style="color: blue;"><span style="color: purple;">here</span></a></span></b><b><span style="color: #5501d1; font-family: Calibri, sans-serif; font-size: 11pt;"> for more information and </span></b><b><span style="color: purple; font-family: Calibri, sans-serif; font-size: 11pt;"><a href="http://njpaeos.org/index_files/Advances%20EoE.pdf" style="color: blue;"><span style="color: purple;">a flyer about the event</span></a></span></b><b><span style="color: #5501d1; font-family: Calibri, sans-serif; font-size: 11pt;">.<o:p></o:p></span></b></div>
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<br />EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com0tag:blogger.com,1999:blog-2286808498863798938.post-78964125566360515162012-02-22T13:01:00.000-05:002012-02-23T09:54:37.185-05:00NJ/PA Elemental Formula LegislationThere is a new Facebook community to support elemental formula legislation in NJ & PA. There will be a new bill introduced to the NJ legislature in March, 2012. Information will be posted at <a href="https://www.facebook.com/pages/NJPA-Support-for-Formula-Legislation/215841811847087">https://www.facebook.com/pages/NJPA-Support-for-Formula-Legislation/215841811847087</a><br />
<br />
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<a href="http://4.bp.blogspot.com/-6Rzi5heHufs/T0ZSl6ulyXI/AAAAAAAAAgs/KQDSGRQYgzU/s1600/NJ_Flag.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="212" src="http://4.bp.blogspot.com/-6Rzi5heHufs/T0ZSl6ulyXI/AAAAAAAAAgs/KQDSGRQYgzU/s320/NJ_Flag.jpg" width="320" /></a></div>
Assemblymen John Amodeo (R) and Chris Brown (R) will reintroduce A-3830, which, if passed, would mandate health insurance coverage for certain amino acid-based elemental formulas that are used to treat eosinophilic disorders. Both welcome other assembly members to join them in sponsoring the bill. Assemblyman Dan Benson (D) has already expressed a desire to do so.<br />
<br />
If you reside in NJ, please meet with your local assembly representatives to educate them on this issue and request that they sign onto the bill. Assembly members' staff may contact Tom Suthard at Assemblymen Amodeo and Brown's office to indicate their interest in becoming a sponsor. Their phone # is 609-677-8266.<br />
<br />
Please share this information with others, especially those in the eosinophilic and food allergy communities, as well as those who are dealing with any other medical condition that necessitates treatment with elemental formula, whether delivered enterally or orally. <br />
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<br />EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com0tag:blogger.com,1999:blog-2286808498863798938.post-91059087464930111382012-02-06T13:42:00.000-05:002012-02-07T06:37:57.356-05:00Feeding Tube Awareness Week<a href="http://2.bp.blogspot.com/-kfSBsFgp5c4/TzAU2CJtZKI/AAAAAAAAAfw/--ngq9cmvBg/s1600/NG+tubes.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="http://2.bp.blogspot.com/-kfSBsFgp5c4/TzAU2CJtZKI/AAAAAAAAAfw/--ngq9cmvBg/s200/NG+tubes.jpg" style="cursor: move;" width="200" /></a>This is the 2nd annual Feeding Tube Awareness Week (February 5 - 11, 2012). There are NG (Naso Gastric) tubes, NJ (Naso Jejunal), ND (Naso Duodenal), G (Gastric), GJ (Gastric Jejunal), J (Jejunal) and TPN (Total Parenteral Nutrition). No one wants them and no one wants their children to have them, but when they are necessary, they can be a Godsend! <br />
<a href="http://1.bp.blogspot.com/-jRkoABNFzy0/TzAWWJuOLTI/AAAAAAAAAgA/nQruRxlM0rs/s1600/G-tube_mic-key+button.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="http://1.bp.blogspot.com/-jRkoABNFzy0/TzAWWJuOLTI/AAAAAAAAAgA/nQruRxlM0rs/s200/G-tube_mic-key+button.jpg" width="150" /></a><br />
The feeding tubes, along with liquid medical "food", such as elemental formulas, can provide the proper nutrition when a child is allergic to many foods (typical allergy or eosinophilic disorder), can't swallow, has a gastrointestinal (GI) disorder, or isn't getting enough oral nutrition for various possible reasons. They can allow a person to receive the nutrition necessary for proper nourishment to gain weight, grow, and thrive, which they were otherwise unable to do on their own. There are many reasons why someone may need a feeding tube, but a person does not get one unless they REALLY need one. Please don't judge.<br />
<br />
<a href="http://1.bp.blogspot.com/-4W_Ptt9-FzI/TzAVCXjKSHI/AAAAAAAAAf4/qv26YnyGx1M/s1600/G-tube_PEG+tube.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="171" src="http://1.bp.blogspot.com/-4W_Ptt9-FzI/TzAVCXjKSHI/AAAAAAAAAf4/qv26YnyGx1M/s320/G-tube_PEG+tube.jpg" width="320" /></a>If you see someone with a feeding tube, please don't make a face, stare, or ask "What's WRONG with YOU?" They don't have "cooties". It is an alternative, yet necessary way for them to "eat". Please give that person (especially a child) a smile and know that whatever the reason, that feeding tube IS a medical necessity and it is providing medical benefit to them. If your own child knows someone with a feeding tube, please reiterate your lessons of tolerance and understanding, just as you would with all other differences. They likely feel left out enough as it is, and we can never have too many friends who care.<br />
<br />
You can learn more about feeding tubes at the following organizations' websites:<br />
<a href="http://apfed.org/drupal/drupal/feeding_tubes" target="_blank">APFED (Americal Partnership For Eosinophilic Disorders)</a><br />
<a href="http://www.feedingtubeawareness.org/about-feeding-tubes.html" target="_blank">Feeding Tube Awareness</a><br />
<a href="http://www.oley.org/" target="_blank">The Oley Foundation</a> <br />
<br />
To learn more about our personal journey and how the use of feeding tubes have affected our lives and improved the health of both of my children, please feel free to read my prior blog posts, especially the first one <a href="http://eosmom.blogspot.com/2010/06/first-post.html" target="_blank">"First Post - Our Journey"</a>.<br />
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<br />EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com3tag:blogger.com,1999:blog-2286808498863798938.post-87605681848008339232012-02-05T10:39:00.000-05:002012-02-05T10:39:15.182-05:00Recipe for Gluten-Free Beef Stew with Red Wine<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/--bhIpsUo_PQ/Ty6M4N9bdsI/AAAAAAAAAfI/9VXucfx6HJw/s1600/Beef+Stew.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/--bhIpsUo_PQ/Ty6M4N9bdsI/AAAAAAAAAfI/9VXucfx6HJw/s320/Beef+Stew.jpg" width="240" /></a></div>
Since my son has been trialing beef, I have been trying to come up with a beef stew recipe that everyone in my family would enjoy. After scouring through various recipes for stew in general, I experimented with the ingredients to suit our needs and came up with this recipe. It has been a hit! This one is free of wheat, gluten grains, dairy, soy, egg and any of the most common food allergens. <br />
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I previously only had stew with larger chunks of meat, but I noticed that cutting the stew meat into smaller pieces helped make it very tender and easier for the kids to eat. While I used beef, I am assuming this would work with lamb as well, and I will likely try that in the future.<br />
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You can chop or dice the onions and other vegetables to the size of your choice. I dice the onions (very small but not quite minced) because my son won't eat them if he can see them or recognizes them. <br />
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While I recognize that I'm not using chicken, I experimented with the <a href="http://www.conradricemill.com/Details.asp?ProdID=90&category=" target="_blank">Hol*Grain G/F Chicken Coating Mix</a> and it worked well. It contains rice flour, brown rice bread crumbs (medium grain brown rice), red pepper, black pepper, garlic powder, chili pepper, salt and xanthan gum. <br />
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If you can't have rice in your diet, you could omit the <a href="http://www.conradricemill.com/Details.asp?ProdID=90&category=" target="_blank">Hol*Grain G/F Chicken Coating Mix</a> or rice flour mixture altogether. You could also use another safe flour in lieu of rice. The beef can just be browned with a little salt and pepper. It will not be quite as tender, and the stew will be a bit more "soupy", but it will still be good.<br />
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<b>Gluten-Free Beef Stew With Red Wine </b><br />
<b><br /></b><br />
<b>Ingredients:</b><br />
<br />
<ul>
<li>1 1/2 - 2 lbs beef stew meat, cut into small (1-2") pieces.</li>
<li>2-3 tablespoons <a href="http://www.conradricemill.com/Details.asp?ProdID=90&category=" target="_blank">Hol*Grain G/F Chicken Coating Mix</a> ~ or ~ a mixture of rice flour and the following seasonings to taste: garlic powder, paprika, salt and pepper (see preparation instructions below).</li>
<li>salt and pepper to taste</li>
<li>2 tablespoons olive oil</li>
<li>1 cup dry red wine</li>
<li>1 box (32 oz) Pacific Brand Organic Beef Broth or other safe beef broth</li>
<li>1/2 tsp dried thyme</li>
<li>1 bay leaf</li>
<li>1 onion, chopped or diced to the size of your choice</li>
<li>1 medium to large parsnip, peeled and chopped into small pieces</li>
<li>1 small turnip, peeled and chopped into 1" pieces (1/2 of a rutabaga can also be substituted)</li>
<li>3-4 carrots, peeled and chopped into small pieces.</li>
</ul>
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<br />
<b>Preparation:</b><br />
<br />
<ol>
<li>Chop/dice the vegetables and set aside.</li>
<li>Cut beef into 1-2" pieces; pat with paper towels to absorb excess moisture. In a bowl, combine 2-3 Tbsp. <a href="http://www.conradricemill.com/Details.asp?ProdID=90&category=" target="_blank">Hol*Grain G/F Chicken Coating Mix</a> or 2-3 Tbsp. rice flour, 1 tsp of salt (or less if preferred) and then add garlic powder, paprika and pepper to taste. Add beef and toss to coat. In a pinch, Lawry's Seasoned Salt can be substituted in the flour mixture. </li>
<li>Heat olive oil in a Dutch oven over medium-high heat. Add beef to the hot oil and cook, stirring often for approximately 4-6 minutes, or until brown. Add a little extra fresh-ground pepper while cooking if desired. When browned, remove beef from the Dutch oven and set aside. </li>
<li>Leave the particles of beef and flour at the bottom of the Dutch oven. Add a little bit of the red wine and stir to loosen the particles. Add the onion, carrots, turnip and parsnip, and cook for 2-4 minutes, stirring often to keep them from burning on the bottom. Return the beef to the pan and add the remaining red wine, beef broth, thyme, bay leaf and a little salt to taste (if still needed). Bring to a boil. You can also add a little extra thyme to taste if preferred.</li>
<li>Cover, reduce heat to low, and cook, stirring occasionally, 1 to 1 1/2 hours, or until meat is fork-tender. </li>
<li>Serve and enjoy! </li>
</ol>
<div>
Serves 4-6 people.</div>
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<br />EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com0tag:blogger.com,1999:blog-2286808498863798938.post-18371167938458988312012-02-04T12:24:00.002-05:002012-02-04T12:24:45.369-05:00Dairy-Free "Greek Yogurt"If you are looking for a dairy-free "Greek Yogurt", <a href="http://sodeliciousdairyfree.com/products/product.php?p=so_delicious_yogurt_cm_gk_plain" target="_blank">So Delicious</a> has come out with one! I made a yummy shake for my "non-eos" daughter last night, using that <a href="http://sodeliciousdairyfree.com/products/product.php?p=so_delicious_yogurt_cm_gk_plain" target="_blank">yogurt</a>, a banana, frozen blueberries, <a href="http://astore.amazon.com/eos0d-20/detail/B000LKU41E" target="_blank">rice milk</a> and <a href="http://astore.amazon.com/eos0d-20/detail/B000HCX3W8" target="_blank">MLO Brown Rice Protein Powder</a>. She only has to avoid dairy, but if I omit the bananas, it is safe for my son ("Eos Boy"), too!<br />
<br />
On occasion, my daughter has a hard time eating solid foods, even soft foods. That was the case yesterday, so I made the smoothie to give her something substantial and filling. It was a hit! <br />
<br />
The yogurt may contain only 2 grams of protein, but it DOES have 9 grams of dietary fiber (36% of the recommended daily intake) in each 6 oz container. So, if you have So Delicious products in your local store, keep an eye out for this new yogurt. I paid $1.99 for a small, 6 oz container, which is rather steep, but on the bright side, I was able to make something special, delicious, and nutritious for my daughter, which was also easy to ingest. <br />
<br />
If you would like to check the ingredients in advance to see if it's safe for you to use, please <a href="http://sodeliciousdairyfree.com/products/product.php?p=so_delicious_yogurt_cm_gk_plain" target="_blank">click here</a> for the product link. <br />
<br />
I'm looking forward to trying other combinations for both of my kids!<br />
<br />
<br />EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com0tag:blogger.com,1999:blog-2286808498863798938.post-76027005243377895612012-02-03T18:30:00.000-05:002012-02-03T18:33:12.789-05:00Back to Food Trials & Hoping To Blenderize FoodMy son has stopped taking swallowed Flovent and is back to food trials. He is currently trialing beef, which he has to have every day for 3 months before having another endoscopy with biopsies to determine if it is safe for him to eat, or if he has eosinophilic infiltration in his esophagus. So far, he doesn't have any definitive symptoms that would indicate he is reacting, so I'm crossing my fingers. He still has 2 more months to go before his scope. <br />
<br />
The problem we've been experiencing is with his weight. He lost a lot of weight when he stopped getting his enteral formula (an elemental liquid medical food that goes though his feeding tube) but his intake has improved and he is growing. He looks VERY skinny now, and his pants will literally fall off without drawstrings or belts to hold them up, but his current growth spurt may be playing a part. It's difficult not to be concerned when I see how skinny he has become, but I have to try not to overreact. I'm trying to keep tabs on it to make sure he isn't dropping any more weight. <br />
<br />
We would love to have him discontinue his <a href="http://astore.amazon.com/eos0d-20/detail/B0049ZE396" target="_blank">enteral formula</a> and get rid of his feeding tube, but thus far we haven't been able to get enough nutrients in him to do so. He still supplements what he is eating with formula and if he isn't feeling well, that's all he will take. So, I have been trying to figure out how to get enough nutrients and calories into him with the safe foods that he has. His nutritionist recommended making shakes/smoothies with a safe protein powder (understanding that he can't have soy, dairy, wheat, etc.). I have found a very good <a href="http://astore.amazon.com/eos0d-20/detail/B000HCX3W8" target="_blank">brown rice protein powder</a> which can be used to make protein packed shakes. He can have rice milk, coconut yogurt, berries, peaches, pineapple, pears, grapes, etc. However, he can't have bananas. He failed (reacted to) a combination of bananas and oats and will need to retrial bananas by themselves in the near future to determine if they are safe or not. I suspect it was the oats, but there is no way to be sure without trialing them separately. He also can't have melons or citrus fruits, which he definitely failed (they caused an eosinophilic reaction in his esophagus). <br />
<br />
Since he does not like most vegetables, I would really like to put them into a smoothie. However, my blender can't properly handle raw vegetables. It doesn't make them smooth (it leaves chunks) so it isn't sufficient and you really can't make a good smoothie with cooked fruits and vegetables. I'm trying to find a blender that CAN handle raw fruits and vegetables, so that I can make him smoothies that will provide him with the natural nutrients that he is otherwise lacking. <br />
<br />
I am trying to find out if there are any potential medically-related tax deductions or if medical flex spending accounts can be used for the better blenders (with proper documentation and letters of medical need or Rxs from physicians). There is one in particular, the <a href="http://astore.amazon.com/eos0d-20/detail/B001F29F9O" target="_blank">Vitamix Blender</a>, that I think would be perfect. I have seen them demonstrated locally and I could make so many things that he could eat or drink, which would greatly benefit him. If is not tax deductible or eligible for flex spending reimbursement, I won't be able to afford it. <br />
<br />
If I do find that it's possible to purchase one, I will gladly post recipes (and videos if I can figure out how) that are free of the most common allergens, as well as others that are common triggers for Eosinophilic Esophagitis. I truly feel that it would be beneficial to many parents of kids with Eosinophilic Gastrointestinal Disorders as well as adults with EoE / EGID. It may greatly reduce the stress of trying to provide proper nutrition on a severely limited diet. <br />
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In the meantime, I will continue to struggle with getting enough nutrients and calories into my teenager who desperately needs them. <br />
<br />
<br />EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com2tag:blogger.com,1999:blog-2286808498863798938.post-18591023325559800622011-11-30T07:33:00.001-05:002011-12-10T14:28:19.283-05:00Holidays with Food Allergies and Eosinophilic Esophagitis<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-OXBGOdubBb8/TtY-zxVrLZI/AAAAAAAAAZA/xpKsho3I2rM/s1600/Holiday+Collage_large.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="98" src="http://4.bp.blogspot.com/-OXBGOdubBb8/TtY-zxVrLZI/AAAAAAAAAZA/xpKsho3I2rM/s320/Holiday+Collage_large.jpg" width="320" /></a></div>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Thanksgiving has passed and the winter holidays are quickly approaching. Many parents who are new to food allergies and restricted diets are undoubtedly panicking, not sure what their kids will be able to eat, if anything at all, and hoping to make the holidays special without focusing on food. Thankfully, we now have plenty of information at our fingertips. There are some really good suggestions for dealing with the holidays and any special event, regardless of your dietary needs. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I just came across a wonderful <a href="http://www.kidswithfoodallergies.org/KFA-Celebrates-Christmas.pdf">PDF booklet</a> with allergy-friendly suggestions for celebrating Christmas. It was put together by Kids With Food Allergies: <a href="http://www.kidswithfoodallergies.org/KFA-Celebrates-Christmas.pdf">http://www.kidswithfoodallergies.org/KFA-Celebrates-Christmas.pdf</a> Take a look at the recommendations for a food-free holiday as well as the recipes for candy canes, rice nog and gingerbread cookies, to see if they might be safe for your family, or if you can modify them to make them safe. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">There is also a PDF for celebrating Chanukkah: <a href="http://www.kidswithfoodallergies.org/KFA-Celebrates-Chanukah.pdf">http://www.kidswithfoodallergies.org/KFA-Celebrates-Chanukah.pdf</a>, which includes two latke recipes (white potato and sweet potato).</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">They have various <a href="http://www.kidswithfoodallergies.org/resourcespre.php?id=88&title=Celebrating_the_holidays_with_food_allergies">pamphlets</a> with ideas for dealing with the different <a href="http://www.kidswithfoodallergies.org/resourcespre.php?id=88&title=Celebrating_the_holidays_with_food_allergies">holidays</a>, </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">as well as an <a href="http://www.kidswithfoodallergies.org/resourcespre.php?id=120&title=food_allergy_restrictions_during_the_holidays" target="_blank">article</a> with some tips from Psychologist John F. Taylor, Ph.D., author of the book, "Why Can't I Eat That! Helping Kids Obey Medical Diets."</span><span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif;"><span class="Apple-style-span" style="font-size: 11px; line-height: 14px;"> </span></span><br />
<a href="http://www.kidswithfoodallergies.org/resourcespre.php?id=120&title=food_allergy_restrictions_during_the_holidays">http://www.kidswithfoodallergies.org/resourcespre.php?id=120&title=food_allergy_restrictions_during_the_holidays</a><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Just before Thanksgiving, they also provided the following allergy-friendly recipes:</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Just-Sugar Lollipops: <a href="http://www.kidswithfoodallergies.org/allergy_free_lollipop_recipe.php">http://www.kidswithfoodallergies.org/allergy_free_lollipop_recipe.php</a></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Homemade Candy Canes: <a href="http://www.kidswithfoodallergies.org/candy_cane_recipe.php">http://www.kidswithfoodallergies.org/candy_cane_recipe.php</a></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Sugar Sculptures: <a href="http://www.kidswithfoodallergies.org/allergy-free-sugar-sculpture-Christmas-tree.php">http://www.kidswithfoodallergies.org/allergy-free-sugar-sculpture-Christmas-tree.php</a></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Sugar Shapes: <a href="http://www.kidswithfoodallergies.org/allergy-free-sugar-shapes.php">http://www.kidswithfoodallergies.org/allergy-free-sugar-shapes.php</a></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Hokey Pokey or Honeycomb: <a href="http://www.kidswithfoodallergies.org/allergy-free-sugar-honeycomb.php">http://www.kidswithfoodallergies.org/allergy-free-sugar-honeycomb.php</a></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">You can find lots of wonderful allergy-friendly recipes at: </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /><a href="http://www.kidswithfoodallergies.org/recipes.html">Kids With Food Allergies</a>: (many require membership, which is quite worthwhile, but some are free). <br /><br /><a href="http://www.kidswithfoodallergies.org/recipes.html">FAAN (Food Allergy and Anaphylaxis Network)</a> also has plenty of recipes on their site <br /><br /><a href="http://www.livingwithout.com/">LivingWithout Magazine</a> (lots of allergy-friendly and gluten-free recipes in their magazine and on their site)</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Cybele Pascal's <a href="http://www.cybelepascal.com/">website</a> and <a href="http://astore.amazon.com/eos0d-20?_encoding=UTF8&node=1">cookbooks</a>: <a href="http://www.cybelepascal.com/">http://www.cybelepascal.com/</a><br /><br />APFED: <a href="http://apfed.org/drupal/drupal/recipes">Recipes and suggestions</a> and their <a href="http://apfed.org/drupal/drupal/taxonomy/term/2">"Extreme Cooking for Exceptional Diets" cookbook</a> </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I also have some of my personal <a href="http://astore.amazon.com/eos0d-20?_encoding=UTF8&node=1">cookbook recommendations</a> in the <a href="http://astore.amazon.com/eos0d-20?_encoding=UTF8&node=1">EosMom Store</a>.<br /><br />There are so many more resources; too many to list, but I think this is a good start and hope it will be helpful. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">As for my own family, thanks to swallowed Flovent, my son has been able to eat holiday meals without restriction for the first time since he was 6 years old. However, some of the things that you would assume would be a hit were foreign to him, and were not automatically welcomed with an open mouth. He's getting used to them, though. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">My daughter still has to avoid dairy, and I found a really good <a href="http://www.turtlemountain.com/prod_user/prod_recipes/recipe_view.php">french toast recipe</a>, which we made on Thanksgiving morning and will again on Christmas. The recipe is found on the carton of <a href="http://www.turtlemountain.com/products/product.php?p=so_delicious_beverage_qt_nog">So Delicious Coconut Nog</a>, or you can also find it <a href="http://www.turtlemountain.com/prod_user/prod_recipes/recipe_view.php">here</a>, on the <a href="http://www.turtlemountain.com/prod_user/prod_recipes/recipe_view.php">manufacturer's website</a>. It calls for gluten-free bread (use whatever bread is safe for you) and uses bananas in lieu of eggs. Since we didn't have to avoid eggs or glutens this Thanksgiving, I just used my own recipe and substituted the coconut nog for milk. It was absolutely AMAZING!!! After the holidays, my son will discontinue the Flovent and will re-trial bananas to see if they are safe. If they aren't, I will have to see if I can find another substitution so that I can use this recipe in the future. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Whichever holiday you are celebrating, I wish everyone a happy, healthy, and peaceful holiday season and all of the best in the coming year. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: x-small;"><span id="goog_916264760"></span><span id="goog_916264761"></span><a href="http://www.blogger.com/"></a></span></span>EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com0tag:blogger.com,1999:blog-2286808498863798938.post-42444180231515991632011-08-20T14:03:00.002-04:002011-08-20T14:12:04.511-04:00True Life | I'm Allergic To Everything<a href="http://www.mtv.com/videos/true-life-im-allergic-to-everything/1666298/playlist.jhtml?xrs=share_blogger">True Life | I'm Allergic To Everything</a>: Raelyn And Zeke are two young people who suffer uncertainty every time they take a bite of food. Can they get their allergic reactions under control so they might find relief in their everyday lives? <br />
<br />
Zeke is from Texas and has Eosinophilic Esophagitis. He and his family have also co-founded a charity called "Angels For Eosinophilic Research Alliance" <a href="http://www.angelsforeos.org/">http://www.angelsforeos.org</a><br />
<br />
<embed src="http://media.mtvnservices.com/mgid:uma:videolist:mtv.com:1666298/cp~instance%3Dfullepisode%26autoPlay%3Dfalse%26id%3D1666298%26uri%3Dmgid%3Auma%3Avideolist%3Amtv.com%3A1666298" width="512" height="288" type="application/x-shockwave-flash" allowFullScreen="true" allowScriptAccess="always" base="."></embed><div style="margin:0px;padding:4px;width:500px;text-align:center;font-family:Verdana,sans-serif;font-size:12px;"><a href="http://www.mtv.com/shows/truelife/series.jhtml" style="color:#439CD8;" target="_blank">True Life</a> - <a href="http://www.mtv.com/ontv/" style="color:#439CD8;" target="_blank">MTV Shows</a></div>EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com1tag:blogger.com,1999:blog-2286808498863798938.post-41202740499485957092011-08-01T17:45:00.007-04:002011-08-18T10:11:51.253-04:00Eosinophilic Esophagitis: Finally seeing the light at the end of the tunnel<div class="MsoNormal">My son is now 13 years old. He is officially a teenager, although I still can’t understand how that happened so soon! It feels like he just learned how to speak, read, write, ride a bike, and just got through all of the childhood milestones that we, as parents, eagerly look forward to & document. Among those milestones is a child being able to eat on his own. This is one that we have struggled with and he is still working on to some extent. However, it is not because of a developmental disability. It is because of a gastrointestinal disability. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">My son has had a feeding tube for the past 6 ½ years and has been consistently trialing foods for over 6 years. Most have been successful, and he has been fortunate enough to keep the majority of the foods he has trialed. We have been able to pinpoint most, if not all of the foods that trigger his Eosinophilic Esophagitis. We still have a handful of foods left to trial, but for the summer, we decided to have him trial a medication (swallowed Flovent) and eat everything that would otherwise make him sick. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">While the long-term goal is to have him control the disease with a safe diet, he also needs to know what options he will have going forward into adulthood. As an adult, he will likely be going on vacations, out to lunch with friends or co-workers and, dare I say it…(gulp) <b style="mso-bidi-font-weight: normal;">DATES!</b> He needs to know if there is a medication that will work and, if so, how well it works, what the side effects might be, and so on. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Flovent (fluticasone)<span class="Apple-style-span" style="font-family: arial, sans-serif; font-size: x-small;"><span class="Apple-style-span" style="line-height: 15px;"> </span></span>is one of the medications that are used as off-label treatments for Eosinophilic Esophagitis (EoE). It is an inhaled steroid medication that is commonly used for asthma, but for the purposes of treating EoE, it is swallowed instead of inhaled. He takes 2 puffs in his mouth (one-at-a-time), swallows, and then waits 30 minutes before eating or drinking. He does this once in the morning when he wakes up and once at night before bed. So far, so good!</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">He has been taking the medication and eating a normal diet since the end of May. He was able to enjoy a week at Boy Scout Camp without worrying about getting enteral feedings at the nurse’s cabin or having to wait while I warmed up the safe foods that I brought with us. He is able to enjoy “Pizza Wednesday” with everyone else at school (he is going a few days a week during the summer). He was able to eat out during field trips, too. We have been exposing him to a variety of different types of foods. He is still getting used to the flavors and textures, but he’s adapting quickly and enjoying the ability to eat all of the things he has been avoiding for the past 6 ½ years.<br />
<br style="mso-special-character: line-break;" /></div><div class="MsoNormal">Not all medications work the same for everyone, and thankfully there are now a few options. Some people find that Flovent works well, but for others it doesn’t work at all or only works for a short time and then becomes less effective. Budesonide is another medication that is being used to treat some patients. It is mixed with Splenda to form a slurry, which is then swallowed. Both Budesonide and Flovent are steroid medications. Budesonide is also known as Pulmicort (for asthma) or Rhinocort (for nasal allergies). <br />
<br style="mso-special-character: line-break;" /></div><div class="MsoNormal">There are clinical studies being done with another medication, an anti-IL5 medication that is delivered via IV infusions. That has reportedly been used rather successfully in many patients with eosinophilic gastrointestinal disorders. Thankfully, it doesn’t seem that my son will need that particular medication, but it is good to know that one day it may be an option for patients who do need it.<br />
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So far, the major downside of this whole process has been the length of time it has taken to determine the trigger foods, the method of delivering the safe medical food (the formula, which tastes so bad that he couldn’t drink it and needed a feeding tube) and the invasive nature of the procedures needed to confirm whether or not he is reacting to a particular food. Having an endoscopy with biopsies is currently the only way to be sure whether or not the eosinophils have infiltrated the esophagus and what they are doing in there (whether or not they have degranulated and caused damage, etc).<br />
<br />
Of course, there’s also the affect it has had on him socially and emotionally, as he can’t normally eat what his friends are eating and that has limited his ability to socialize during lunch, parties, and so on. When he had fewer safe food options, he couldn’t handle being near others who were eating. He also understandably feels a bit self-conscious about having a g-tube in his stomach, although it has been much better than having an NG tube in that it is not easily visible. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I have always taught my kids that everyone has their individual struggles in life; some more than others, and some are more obvious than others, but everyone has them. We can allow those struggles to limit or even incapacitate us, or we can choose to overcome them as much as possible and not let them define us. I hope they do remember that through their lives, because our struggles will vary and change throughout our lifetime. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">My hope for those with eosinophilic esophagitis and other eosinophilic gastrointestinal disorders is that, one day, there will be a safe and effective, yet less-invasive way of diagnosing the disorders and then determining if a reaction is taking place with food elimination and food trials, medications, etc. While I am obviously hoping for a cure, as is EVERYONE who is dealing with it personally or in a loved one, I am also hoping for cures to other autoimmune disorders like celiac, diabetes, vitiligo, alopecia, Hashimoto's disease (thyroid) and so on. I would also love to see a cure for asthma. Maybe one day, enough will be known about all of them to prevent the body from having the inappropriate immune reactions that occur in these disorders. I would love to see that in my lifetime. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">As for Eosinophilic Esophagitis specifically, I am hoping that what my son has gone through will no longer be necessary in the not-so-distant future. I hope that there will soon be methods to more easily diagnose, determine the particular allergens responsible for each person, and treat the disease. I am very thankful that there is the knowledge and understanding to treat it at all, because it has helped him to become very healthy as a result, but he has gone through a whole lot to be healthy. At least he will have the knowledge to make informed decisions about his own care as an adult. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Just as when the mother birds kick their babies out of the nest, they hope those babies will fly, I hope and pray that my son will make good decisions as an adult and will be able to remain healthy throughout his life so that he will not just simply able to fly, but<b> SOAR</b> and accomplish whatever he attempts to do. </div>EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com6tag:blogger.com,1999:blog-2286808498863798938.post-87438052747163498882011-07-20T07:28:00.002-04:002011-07-20T08:00:50.824-04:00Special Education Laws and Resources: IEPs, 504 Plans, Classroom Accommodations for ADHD Children | Information on Attention Deficit Symptoms, Treatment, Diagnosis, Parenting, and More - ADDitude<a href="http://www.additudemag.com/adhd/article/8417.html">Special Education Laws and Resources: IEPs, 504 Plans, Classroom Accommodations for ADHD Children | Information on Attention Deficit Symptoms, Treatment, Diagnosis, Parenting, and More - ADDitude </a><br />
<br />
<h2 class="magarticledek">Discover the eight most common problems parents of ADHD and LD children have with school IEPs, 504 plans, and accommodations -- and how to solve them -- with this expert special education advice. </h2><a href="http://www.additudemag.com/adhd/article/8417.html">http://www.additudemag.com/adhd/article/8417.html</a><br />
<br />
I know it's the middle of summer, but as the time for school approaches, we should make sure we have the proper accommodations in place. If not, the school should be contacted to set up a child study team meeting. That meeting can take place as soon as school begins, but it is also possible to have them over the summer if needed.<br />
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<h2 class="magarticledek"><br />
</h2>EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com0tag:blogger.com,1999:blog-2286808498863798938.post-35175226982463808152011-07-16T20:16:00.000-04:002011-07-16T20:16:03.071-04:00New name for the NJ/PA Eosinophilic Website<a href="http://njpaeos.org/">NJPAEos.org</a>, which I originally created several years ago to help those in the NJ/PA Eosinophilic Support Group, is now called "<a href="http://njpaeos.org/index.htm">NJ/PA Eosinophilic Information</a>" (with the same URL address). It still has the same information, including news and resources, but I am hoping to expand on that information in the near future. <br />
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Please feel free to visit the site. Hopefully the information provided will be helpful. EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com0tag:blogger.com,1999:blog-2286808498863798938.post-2556794389082009122011-07-11T12:09:00.003-04:002011-07-11T17:39:34.881-04:00Eosinophilic esophagitis: Updated consensus recommendations for children and adults<a href="http://www.jacionline.org/article/S0091-6749%2811%2900373-3/fulltext">"Eosinophilic Esophagitis: Updated consensus recommendations for children and adults"</a><b><span style="color: #5501d1; font-family: "Georgia","serif"; font-size: 11pt;"><br />
(</span></b><span style="color: #5501d1; font-family: "Georgia","serif"; font-size: 11pt; font-weight: bold;">from</span><b style="font-weight: bold;"><span style="color: #5501d1; font-family: "Georgia","serif"; font-size: 11pt;"> </span></b><b style="font-weight: bold;"><span style="color: #5501d1; font-family: "Georgia","serif"; font-size: 11pt; font-weight: normal;">The Journal of Allergy and Clinical Immunology</span></b><b><span style="color: #5501d1; font-family: "Georgia","serif"; font-size: 11pt;"><a href="http://www.jacionline.org/issues?issue_key=S0091-6749%2811%29X0008-8"><span style="color: #5501d1;"> Volume 128, Issue 1</span></a> , Pages 3-20.e6, July 2011)<o:p></o:p></span></b><b><span style="color: #5501d1; font-family: "Georgia","serif"; font-size: 11pt;"><o:p><br />
<br />
</o:p></span></b><b><span style="color: purple; font-family: "Georgia","serif"; font-size: 10pt;"><a href="http://www.jacionline.org/article/S0091-6749%2811%2900373-3/fulltext"><span style="color: purple;">http://www.jacionline.org/article/S0091-6749%2811%2900373-3/fulltext</span></a></span></b><br />
<br />
New consensus recommendations for the diagnosis and management of EoE! This is an important article to read if you are dealing with Eosinophilic Esophagitis!EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com0tag:blogger.com,1999:blog-2286808498863798938.post-14954844579552692862011-06-14T09:00:00.002-04:002011-06-14T09:07:17.459-04:00Egg Allergy? How to substitute egg in recipes<a href="http://www.kidswithfoodallergies.org/resourcespre.php?id=104&title=Basic_recipe_substitutions_for_egg_allergy">Egg Allergy? How to substitute egg in recipes</a><br />
<br />
Were you aware that the type of egg substitute you choose depends on whether you are using egg in the recipe as a binder or as a leavening agent? You can find out more at Kids With Food Allergies. <br />
<a href="http://www.kidswithfoodallergies.org/resourcespre.php?id=104&title=Basic_recipe_substitutions_for_egg_allergy">http://www.kidswithfoodallergies.org/resourcespre.php?id=104&title=Basic_recipe_substitutions_for_egg_allergy</a>EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com1tag:blogger.com,1999:blog-2286808498863798938.post-67080108469110640192011-06-05T15:39:00.003-04:002011-07-11T18:56:22.475-04:00Study reveals long-term outcomes for children with eosinophilic esophagitis (EoE)Important article from Cincinnati Children's Hospital: <a href="http://www.cincinnatichildrens.org/health/subscribe/ped-insights/06-11/eosinophilic.htm">http://www.cincinnatichildrens.org/health/subscribe/ped-insights/06-11/eosinophilic.htm</a><br />
<br />
<b>June 2011<br />
Study reveals long-term outcomes for children with eosinophilic esophagitis (EoE)<br />
</b><br />
The first study of its kind to examine the long-term natural history of eosinophilic esophagitis (EoE) reveals that children with EoE who also have other allergies are most likely to suffer severe complications from the disease. They also face higher risk of symptoms lasting years into adulthood.<br />
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The study, published online this month in the Journal of Allergy and Clinical Immunology, was conducted by researchers at Cincinnati Children’s Hospital Medical Center who studied hundreds of people diagnosed with esophageal eosinophilia before EoE was known to be a separate disease. The study’s lead authors were James Franciosi, MD, MS, MSCE, and Charles DeBrosse, MD.<br />
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“This important set of findings suggests that disease severity is greater among patients with allergies,” says Marc Rothenberg MD, PhD, director of the Division of Allergy and Immunology and the Cincinnati Center for Eosinophilic Disorders, and senior author of the study.<br />
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“Taken one step further, these data support the need for allergy testing among patients with EoE, as identifying patients susceptible to allergic reactions will not only assist in dietary management, but will help identify those at greatest risk for persistent disease,” Franciosi says.<br />
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The study concludes that esophageal eosinophilia is associated with reduced quality of life and persistent symptoms as much as 15 years after presentation. In addition, elevated eosinophil counts in combination with other allergies during childhood increase the risk of swallowing difficulties in adulthood.<br />
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<b>What is EoE?</b><br />
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Eosinophilic esophagitis is an inflammation of the esophagus that results in many symptoms, including difficulty swallowing (dysphagia) as well as structural changes and high eosinophil counts (eosinophilia), a type of white blood cell typically involved in allergy and parasitic infections. Sometimes this inflammatory reaction is so severe that managing symptoms requires eliminating solid food and providing nutrition via special liquid formula. <br />
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EoE was established as a separate disease in 2007; defined as at least 15 eosinophils in a high-powered field (HPF) of esophageal tissue. Until recently, patients suffering from this disease were often misdiagnosed as having gastroesophageal reflux disease (GERD) or chronic esophagitis.<br />
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<b>Researchers now estimate that about one in every 1,000 people in the U.S. suffer from EoE.</b> Cincinnati Children’s encounters about 30 cases each week.<br />
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“This emerging disorder is attracting increasing interest among allergists, gastroenterologists, pathologists, and primary care physicians,” Rothernberg says. “However, identifying how best to manage this condition has been hindered by a lack of data regarding long-term outcomes.”<br />
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<b>Study method</b><br />
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Researchers at Cincinnati Children’s embarked upon a novel project to examine the natural history of EoE during the transition from childhood into adulthood.<br />
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The project involved reviewing 3,817 pediatric esophageal biopsy specimens from 1982-1999. This revealed more than 660 patients with retrospectively identified eosinophilic esophagitis (rEoE) and chronic esophagitis (CE). This group, as well as an age-matched control group, were asked to complete health-related outcome questionnaires.<br />
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The study collected 209 completed questionnaires.<br />
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<b>Key findings</b><br />
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The surveys show that quality of life was significantly decreased among patients with rEoE and CE compared to the control group. In fact, 73 percent of patients with EoE suffered symptoms into adulthood.<br />
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Dysphagia was reported among 49 percent of patients with rEoE and 37 percent of patients with CE compared to 6 percent for the control group. Elevated eosinophil counts during childhood were predictive of this condition in adulthood.<br />
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Food impaction was reported among 40 percent of patients with rEoE and 14 percent of patients with CE compared to 3 percent of the control group.<br />
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Higher rates of dysphagia occurred if EoE patients also had a food allergy, allergic rhinitis or asthma. Food impaction was more common among patients with reported food allergy.<br />
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<b>Next steps</b><br />
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<b>This paper reports the longest natural history study of pediatric EoE to date.</b><br />
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<b>“It is rare to have this type of information on patients for any disease, mainly because the patients went untreated for such a long period of time,” Rothenberg says. “In this case, patients did not know they had the disease.”<br />
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This study establishes that rising levels of esophageal eosinophils correlate with worsening disease symptoms. Notably, even though the diagnosis of EoE is currently reserved for patients that have at least 15 eosinophils/HPF, the study reports persistent symptoms associated with levels as low as five eosinophils/HPF. </b><br />
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These findings support more comprehensive allergy testing for patients with EoE to help guide symptom management. In addition, the evidence of long-lasting symptoms for untreated EoE substantiates more aggressive treatment approaches for children.<br />
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“Esophageal eosinophilia should not be ignored,” Rothenberg says. “Presence of food allergy with evidence of esophageal eosinophilia should prompt clinicians for more careful clinical attention and treatment and follow up.”<br />
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For more information about EoE and its treatment, contact the Cincinnati Center for Eosinophilic Disorders at 513-636-2233 (CCED) or 1-800-344-2462, ext. 6-2233; or email us at cced@cchmc.org.EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com1tag:blogger.com,1999:blog-2286808498863798938.post-61085649928534279832010-12-27T18:27:00.006-05:002011-01-20T20:21:58.097-05:00How to Get Tax Deductions for Food | eHow.com<i>The information below is from eHow.com. It should also apply to Eosinophilic Esophagitis, and other eosinophilic disorders. For those of us who are constantly doing food trials and have to buy a lot of alternative foods and ingredients, this is very helpful information.</i> <br />
<p>To clarify, as it isn't listed in the article, as per Publication 502 on the IRS website, <i>" You can include the cost of special food in medical expenses only if:<br />
<br />
1. The food does not satisfy normal nutritional needs,<br />
2. The food alleviates or treats an illness, and<br />
3. The need for the food is substantiated by a physician.<br />
<br />
The amount you can include in medical expenses is limited to the amount by which the cost of the special food exceeds the cost of a normal diet"</i><br />
<p><a href="http://www.ehow.com/how_2089426_get-tax-deductions-food.html?sms_ss=blogger&at_xt=4d1920dd5ab774ad%2C0">How to Get Tax Deductions for Food | eHow.com</a><br />
<p><div><div style="background-color: transparent; border: medium none; color: black; overflow: hidden; text-align: left; text-decoration: none;"><div class="intro FLC"><div class="info"><div class="Details"><div id="intelliTxt">If you have celiac disease where you must avoid eating gluten, you may be able to claim the expense of gluten free <a class="StrongLink" href="http://www.ehow.com/food-and-drink/">foods</a> on your tax return. Read further to see if you might qualify for a tax deduction for your gluten free food <a class="iAs" classname="iAs" href="http://www.ehow.com/how_2089426_get-tax-deductions-food.html#" itxtdid="27179045" style="background-color: transparent ! important; background-image: none; border-bottom: 0.075em solid darkgreen ! important; color: darkgreen ! important; font-size: 100% ! important; font-weight: normal ! important; padding-bottom: 1px ! important; padding-left: 0pt; padding-right: 0pt; padding-top: 0pt; text-decoration: underline ! important;" target="_blank">purchases</a>.</div></div></div></div><div class="article FLC"><div class="sectionTitle FLC"><div class="difficulty">Difficulty: Moderate</div><p><h2 class="Heading1a Underline header">Instructions</h2></div><ol id="intelliTxt"><li id="jsArticleStep1"> <div class="stepNumber"></div>Obtain an official diagnosis from your doctor in writing that you have celiac disease. Without that you cannot claim a tax deduction.<br />
</li>
<li id="jsArticleStep2"> <div class="stepNumber"></div>Save all your records of gluten free purchases, including grocery receipts and canceled checks. Then compile a list of the regular cost of all the gluten free items you've bought. For example, if regular wheat flour costs $1.99 and your gluten free flour costs $3.99, then you can only claim the difference between the two prices: $2.00.<br />
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<li id="jsArticleStep3"> <div class="stepNumber"></div>Note that in order to claim a tax deduction for medical expenses (including any gluten-free food purchases), your expenditures must exceed 7.5 percent of your adjusted gross income minus any insurance reimbursements. For example, if you have an adjusted gross income of $50,000 a year, then your total medical expenditures must exceed $3,750 in order to claim a tax deduction and use the gluten-free food expenses.<br />
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<li id="jsArticleStep4"> <div class="stepNumber"></div>Try using your insurance's flexible spending <a class="iAs" classname="iAs" href="http://www.ehow.com/how_2089426_get-tax-deductions-food.html#" itxtdid="28448877" style="background-color: transparent ! important; background-image: none; border-bottom: 0.075em solid darkgreen ! important; color: darkgreen ! important; font-size: 100% ! important; font-weight: normal ! important; padding-bottom: 1px ! important; padding-left: 0pt; padding-right: 0pt; padding-top: 0pt; text-decoration: underline ! important;" target="_blank">account</a>. If you have medical coverage and likely cannot claim a tax deduction for the cost of your gluten free food, your employer's Flexible Spending Plan may allow reimbursement for the cost of gluten free food.<br />
</li>
<li id="jsArticleStep5"> <div class="stepNumber"></div>Be persistent if you're researching whether your Flexible Spending Plan will cover the cost of gluten free foods. Your human resources department may not know if the expenses are covered. Contact the provider if necessary until you get a definite <a class="iAs" classname="iAs" href="http://www.ehow.com/how_2089426_get-tax-deductions-food.html#" itxtdid="28623278" style="background-color: transparent ! important; background-image: none; border-bottom: 0.075em solid darkgreen ! important; color: darkgreen ! important; font-size: 100% ! important; font-weight: normal ! important; padding-bottom: 1px ! important; padding-left: 0pt; padding-right: 0pt; padding-top: 0pt; text-decoration: underline ! important;" target="_blank">answer</a> from someone whether you can get reimbursed for your gluten-free food.</li>
</ol></div><div><div style="background-color: transparent; border: medium none; color: black; overflow: hidden; text-align: left; text-decoration: none;"><h2 class="Underline sectionTitle Heading1a">Tips & Warnings</h2><ul><li class="FLC"><div class="text">As a result of the 7.5 percent requirement, it's likely that many people with celiac disease won't be able to claim the cost of gluten-free food through their tax return unless they have no medical insurance or have no coverage for a particular condition and must spend their own money for medical care.</div></li>
</ul><br />
<a href="http://www.ehow.com/how_2089426_get-tax-deductions-food.html#ixzz19MG9sR2G" style="color: #003399;"></a></div></div>Read more: <a href="http://www.ehow.com/how_2089426_get-tax-deductions-food.html#ixzz19MFEjEby" style="color: #003399;">How to Get Tax Deductions for Food | eHow.com</a> <a href="http://www.ehow.com/how_2089426_get-tax-deductions-food.html#ixzz19MFEjEby" style="color: #003399;">http://www.ehow.com/how_2089426_get-tax-deductions-food.html#ixzz19MFEjEby</a></div></div>EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com5tag:blogger.com,1999:blog-2286808498863798938.post-34132638794296059692010-11-30T10:29:00.004-05:002012-02-16T18:08:35.600-05:00Sweet Freedom Bakery: It's Gluten-Free and Allergy-Friendly!<div class="separator" style="clear: both; text-align: left;">
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<a href="http://2.bp.blogspot.com/_XoOCONurrUU/TPUT_ivK0rI/AAAAAAAAAHc/Gc4A3BMxRuQ/s1600/Sweet+Freedom+Bakery+Case.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="198" src="http://2.bp.blogspot.com/_XoOCONurrUU/TPUT_ivK0rI/AAAAAAAAAHc/Gc4A3BMxRuQ/s320/Sweet+Freedom+Bakery+Case.jpg" width="320" /></a><span style="font-size: small;">Recently, a friend passed along a link to a new bakery in Philadelphia, called <a href="http://www.sweetfreedombakery.com/">Sweet Freedom Bakery</a>. She said it was worth trying as they cater to those who need allergy-free and gluten-free foods, so I took a peek at their website. I was amazed! The variety is fantastic and they list all of their ingredients as well as allergy information. It is clear that they have experience with food allergies. </span></div>
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I decided to pack my family in the car and take a drive over the bridge to check them out. There is seating available inside of the bakery, so we were able to sit down and enjoy our treats along with a cup of tea and other drinks. They also offer a variety of teas, coffee, juice boxes, bottled water and sodas with agave nectar.<br />
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Sweet Freedom Bakery is located at 1424 South Street, between 15th and Broad Streets and can be reached at 215-545-1899. Parking is available on the street or at one of two parking lots on the same block. Their hours of operation are Tuesday through Saturday 10 am - 7 pm, Sunday 10 am - 4 pm, and they are closed on Monday. <br />
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The bakery is owned and operated by Allison Lubert and Heather Esposito. Heather is also a natural gourmet chef and they are both certified holistic health counselors. They opened Sweet Freedom in January of 2010 and have been serving very happy customers ever since. They offer a variety of cupcakes, muffins, donuts, cookies, loaves, and classic favorites such as brownies, blondies, macaroons, oat crumble and magic bars. There are some seasonal selections, as well as some new and changing items that are not listed online. All of the ingredients are clearly displayed with each selection.<br />
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<a href="http://4.bp.blogspot.com/-wCSZbSIX3b8/Tz2Lo-NHWyI/AAAAAAAAAgY/uHG0GpJ8rUs/s1600/samoa_fauxstess_magicbar.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="http://4.bp.blogspot.com/-wCSZbSIX3b8/Tz2Lo-NHWyI/AAAAAAAAAgY/uHG0GpJ8rUs/s320/samoa_fauxstess_magicbar.jpg" width="320" /></a></div>
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During our visit, we tried a chocolate cupcake with chocolate frosting, chocolate donut with chocolate frosting, ginger snap cookie (a seasonal option), carrot cupcake with vanilla frosting, "magic bar" and vanilla crumb cake with chocolate ganache (which is not listed on their website). We savored every bite of every treat. They were all absolutely delicious. What's more, they are free of dairy, egg, wheat, gluten, soy, peanuts, tree nuts (with the exception of coconut), and even refined sugars. They use a variety of gluten-free flours, such as rice, garbanzo, fava, tapioca and sorghum, and they use natural, unprocessed low-glycemic sweeteners such as coconut sugar, agave nectar, and maple syrup in lieu of refined sugars. <br />
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<a href="http://3.bp.blogspot.com/_XoOCONurrUU/TPUUbFuhm6I/AAAAAAAAAHk/ARF4b_xtghE/s1600/Sweet+Freedom+Classic+Treats.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="193" src="http://3.bp.blogspot.com/_XoOCONurrUU/TPUUbFuhm6I/AAAAAAAAAHk/ARF4b_xtghE/s320/Sweet+Freedom+Classic+Treats.jpg" width="320" /></a></div>
This was the first time my son, who has Eosinophilic Esophagitis and reacts to multiple foods, was able to eat any baked goods that I had not made myself. It was a very special moment. His favorite was the magic bar. It isn't possible for me to choose just one favorite from all that they offer. I am torn between the magic bar and vanilla crumb cake with chocolate ganache. They also had cookie sandwiches that were very tempting, but considering all that we had already tried, we were quite content. I guess we'll just have to plan another trip to try them, too. <br />
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<a href="http://2.bp.blogspot.com/_XoOCONurrUU/TPUUqAbmsDI/AAAAAAAAAHo/UPlTB9cljQ8/s1600/Sweet+Freedom+Menu+Board.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="257" src="http://2.bp.blogspot.com/_XoOCONurrUU/TPUUqAbmsDI/AAAAAAAAAHo/UPlTB9cljQ8/s320/Sweet+Freedom+Menu+Board.jpg" width="320" /></a></div>
Anyone who would like to taste test these sweet treats for themselves, but are not close enough to visit in person, can place an order for delivery. They ship anywhere in the country via UPS. Just call them at 215-545-1899 for details.<br />
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Sweet Freedom's website is <a href="http://sweetfreedombakery.com/">http://sweetfreedombakery.com</a>.<br />
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</div>EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com0tag:blogger.com,1999:blog-2286808498863798938.post-12929437388149152532010-11-24T10:15:00.004-05:002010-11-30T13:12:51.510-05:00Dealing With Food-Filled Holidays When You Can't Eat Like Everyone Else<a href="http://1.bp.blogspot.com/_XoOCONurrUU/TO0mnFhT87I/AAAAAAAAAG0/ZEeQ7IlCvKs/s1600/Turkey+1+clip+art.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="141" src="http://1.bp.blogspot.com/_XoOCONurrUU/TO0mnFhT87I/AAAAAAAAAG0/ZEeQ7IlCvKs/s200/Turkey+1+clip+art.jpg" width="200" /></a>This year we are staying home for Thanksgiving, and it will just be our immediate family. Just the four of us, along with the dog, and the cat. This is in contrast to most years, when there were large Thanksgiving feasts with the in-laws, which is a very large family. So, how does one deal with that when you or your child can't eat like everyone else? What if you or your child can't eat at all, as is the case for so many children with Eosinophilic Esophagitis and Eosinophilic Gastrointestinal Disease.<br />
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As adults, we can make informed choices and we might stick with the diet that keeps us healthy, or we may decide that we are going to suffer the consequences of a "forbidden" meal. Our kids, however, are a different story. What we do to our own body is one thing, but we can't consciously expose our kids to something that is going to make them sick and have them suffer the consequences. While I have heard that I need to have my son "suck it up" and "deal with it" ("it" being the pain, nausea and vomiting), I don't subscribe to that way of thinking. How is it ok to knowingly make your child sick when you have other options and can keep him or her healthy? We have had the occasional "cheat day" in the past, but have learned from those mistakes. We know what the consequences are, and it is not worth it.<br />
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So, how do you deal with it? I can only tell you how we have dealt with holiday celebrations in the past and how we plan on doing so in the future. In the beginning of our journey with eosinophilic esophagitis, when my son was not able to eat anything and was only getting the elemental formula, we stayed home during the meal and dessert. He was six and seven the two years that we did that. It wasn't worth him having an awful time, acting out, and crying afterward. My in-laws live nearby, so I sent my husband and daughter ahead to spend time with his family, and I stayed home with my son until everyone was finished eating. We joined them after dinner and dessert were over. That way, there was some quality time with the grandparents, aunts, uncles and cousins without the stress and anxiety over the food that he couldn't eat. I made sure he had something to keep him busy and content. Nintendo DS, with a few games to choose from, worked for him.<br />
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Every child is different, but if your child is feeling very left out, why make them feel worse by eating a special meal in front of them? There are different schools of thought on this, but that is my opinion. If my child was not bothered as much as he is by others eating in front of him, I probably would have done things a bit differently. You have to do what is right for the individual child.<br />
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As he gained some foods, we changed the way we handled the holidays. I would make a safe meal for my son and take that with us. If there was something he could have for dessert, I would bring that, too. I tried to make it something very special for him. I would make his favorite of the safe foods and have him choose from his safe treats, like a safe brownie or cookies, so he would be less likely to feel left out. When I was able to make things that we could share with others, I did so. Now that his food repertoire has expanded, we can make several options that are good enough to serve to everyone. I am not going to pretend that he wasn't bothered by the fact that he couldn't eat what everyone else was eating, but he was able to handle it much better when he had something he really enjoyed, especially if other people thought it looked really good, too.<br />
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The cousins have grown and moved out of their family homes, and have significant others of their own, so the large family is spending time apart this Thanksgiving. We will have to make changes in the way we celebrate, too. This year, I will make some of our favorites, altered so that they are safe. There is a pumpkin pie recipe in <a href="http://www.amazon.com/Allergen-Free-Bakers-Handbook-Cybele-Pascal/dp/1587613484?ie=UTF8&tag=eos0d-20&link_code=btl&camp=213689&creative=392969" target="_blank">The Allergen-Free Baker's Handbook</a><img alt="" border="0" height="1" src="http://www.assoc-amazon.com/e/ir?t=eos0d-20&l=btl&camp=213689&creative=392969&o=1&a=1587613484" style="border: medium none ! important; margin: 0px ! important; padding: 0px ! important;" width="1" /> that I would like to try. Perhaps Thanksgiving Day would be a nice time to try to make one together, as a family. That may make a nice Thanksgiving memory, and perhaps it will be the start of a new tradition. I haven't tried to make a safe pineapple bread pudding yet, and that was always a favorite. It'll be rather expensive in comparison to what it would cost with regular bread, but if it is special and everyone enjoys it, then it will be worth it. <br />
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Another of my preferred activities on Thanksgiving is to take a trip down to Washington, D.C., especially when there are no family feasts planned or extended family to see. The museums are free and are open for the holiday. Crowds are light. That makes it a very nice time to visit. Hotels often have specials for this particular holiday and you might even be able to get a room within walking distance of the mall (the outdoor mall with the museums). The Metro is always a good option to get around there, too. No matter where you live, there is likely something fun you can do over the holiday that is not food-related. You just have to be creative. Do you live in a warm climate? Do you like to hike or camp? You might also just decide to hole-up, cuddle on the couch and watch some movies or spend time doing crafts, playing cards or board games as a family. The options do not have to be costly.<br />
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Whatever you are doing this holiday season, make it special. While life seems to revolve around food, it does not have to be that way for your family. You can still make it special without the feast. You can still make memories that will last a lifetime. For suggestions about how to deal with celebrations, please go to <a href="http://www.apfed.org/">APFED's website</a> under their <a href="http://www.apfed.org/advocacy.htm">Advocacy</a> tab. You'll find <a href="http://www.apfed.org/downloads/Guide_to_Celebrating_Without_Food.pdf">A Guide to Celebrations Without Food</a> .pdf file with wonderful ideas for each of the holidays and all other types of celebrations. If you are looking for some recipes, using what foods are safe for you or your child, you might want to try <a href="http://www.amazon.com/Living-Without-Magazine-1-year-auto-renewal/dp/B002PXW2A6?ie=UTF8&tag=eos0d-20&link_code=btl&camp=213689&creative=392969" target="_blank">Living Without Magazine</a><img alt="" border="0" height="1" src="http://www.assoc-amazon.com/e/ir?t=eos0d-20&l=btl&camp=213689&creative=392969&o=1&a=B002PXW2A6" style="border: medium none ! important; margin: 0px ! important; padding: 0px ! important;" width="1" /> which can also be found online at <a href="http://www.livingwithout.com/">http://www.livingwithout.com/</a>. They have some great ideas. I also have some cookbooks listed here under <a href="http://eosmom.blogspot.com/p/helpful-books-and-cookbooks.html">"Helpful Books, Handouts and Cookbooks"</a>, which are available online at Amazon.com and are likely in your local bookstores as well. <a href="http://www.kidswithfoodallergies.org/">Kids With Food Allergies</a> also has a lot of good recipes available to members, and they have some free <a href="http://www.kidswithfoodallergies.org/resourcespre.php?id=30&title=Celebrating_Thanksgiving_when_your_child_has_food_allergies">Thanksgiving Survival Tips</a>. <br />
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Have a wonderful Thanksgiving, and please remember to be thankful for all of the things that you DO have and all of the things that are GOOD in your life. Everyone faces certain challenges during their lives, whether they are obvious or not, but it's important to focus on the positives and, as a wise <a href="http://www.amazon.com/Monty-Pythons-Life-Brian-Immaculate/dp/B000VE439Y?ie=UTF8&tag=eos0d-20&link_code=btl&camp=213689&creative=392969" target="_blank">Python</a><img alt="" border="0" height="1" src="http://www.assoc-amazon.com/e/ir?t=eos0d-20&l=btl&camp=213689&creative=392969&o=1&a=B000VE439Y" style="border: medium none ! important; margin: 0px ! important; padding: 0px ! important;" width="1" /> once said, "Always Look on the Bright Side of Life." (Do do, do do do do do do...)EosMomhttp://www.blogger.com/profile/12752181634879351897noreply@blogger.com0