Tuesday, October 2, 2012

Upcoming CURED / Cincinnati Children's Eosinophilic Patient Education and Research Conference

CURED (Campaign Urging Research for Eosinophilic Disorders) and Cincinnati Children's Hospital are co-hosting a patient education and research conference 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.

The purpose of the conference is "to share and gain knowledge in the emerging field of Eosinophilic Gastrointestinal Disorders (EGID), including eosinophilic esophagitis".

The conference will take place at the Main Campus of Cincinnati Children's Hospital (Burnet Campus) at 3333 Burnet Ave, Cincinnati, OH.

According to the CURED website, the conference objectives are as follows:
  1. Present updates on the diagnostic criteria for eosinophilic disorders
  2. Discuss the latest research advances in eosinophilic disorders and their application to patient care
  3. Discuss the psycho/social factors faced by families and patients and how to apply to better disease management
  4. Enumerate Therapeutic options and resources for patients who have EGID


The registration form lists the conference agenda, which is as follows:  

Friday, November 2, 2012 
  • 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.

Saturday, November 3, 2012 
  • 8 am - 5:15 pm - Patient education conference.  The conference will include lectures by those involved in GI, allergy, psychology, nutrition and more. 
  • 7:30 - 9:30 - Meet and Greet at the Radisson Hotel Cincinnati Riverfront (different location than the conference).

Sunday, November 4, 2012 
  • 9 am Continental Breakfast and Lecture by Dr Marc Rothenberg

If you would like to register for the conference, the registration form (which also lists the conference fees) and an option to pay the conference fees online are available via the CURED website.

Monday, September 24, 2012

Proposed Pennsylvania Infant and Children's Health Initiative Act

I am using today’s blog post to pass along an important plea for assistance from PA residents to help get important legislation passed.

URGENT REQUEST FOR PA FRIENDS & FAMILIES DEALING WITH EOSINOPHILIC ESOPHAGITIS:

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.

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.

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: www.legis.state.pa.us

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.

Dear (insert the name of your representative):

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.

Thank you for supporting our family and helping all children living with these debilitating diseases.

(or Thank you for supporting families who suffer from these debilitating diseases.)

Tuesday, August 21, 2012

Important New Educational Advocacy Resources for the Eosinophilic Community


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 Free Appropriate Public Education (FAPE) 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:


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.

Just in time for the new 2012 school year, APFED has added very helpful videos/webinars to their website as well as their YouTube channel and will be adding more in the near future. Some of the available videos and webinars now include: 


APFED now also has a specific section for School Advocacy, 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):


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.

FAAN also has a new educational advocacy resource in the form of an Ask The Expert Q & A with Pete Wright of Wrightslaw. 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:
http://www.foodallergy.org/page/july-august-2012---pete-wright-

The NJ/PA Eosinophilic Information site has recently been updated with additional links and resources, but more updates are coming soon.  Please remember to visit the Advocacy section for additional educational advocacy information and resources or you could just click on the Advocacy Info page of this blog.

Some of the resources that have just been added include:

Office of Civil Rights info about Section 504/ADA

Americans With Disabilities Act Amendments Act of 2008 (provides broader coverage)

Does a Child Need an IEP AND a 504 plan? The answer is “No”.

Migraines, Medication and Missed Instruction – Requesting Eligibility
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.

SPAN (Statewide Parent Advocacy Network) of NJ:


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!

Sunday, May 6, 2012

Interview about Eosinophilic Esophagitis on 93.3 WMMR in Philadelphia

Thank you, 93.3 WMMR in Philadelphia, for doing a wonderful, detailed interview with Dr. Jonathan Spergel of Children's Hospital of Philadelphia and the Harris Family about Eosinophilic Esophagitis (EoE) and their upcoming fundraiser for The Center for Pediatric Eosinophilic Disorders at CHOP.  The Harris Family is doing a wonderful job of educating the public and raising awareness about eosinophilic gastrointestinal disorders!

The interview can be heard at WMMR's website via the following link:

Public Affairs - Eosinophilic Esophagitis - Weekends Blog | 93.3 WMMR: Everything That Rocks

The fundraiser, "Food Phight 5K", 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 www.foodphight5k.com or http://giving.chop.edu/site/TR?fr_id=1380&pg=entry

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.

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."

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.

Friday, May 4, 2012

The 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!

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.

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.

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.

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.

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.

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.

Sunday, April 29, 2012

Training and Changes Are Needed To Prevent Incidents Such As The One Involving Akian


By now, almost everyone has heard about the audio recording of an autistic boy named Akian who was yelled at, teased and called names by the staff in his classroom.  The father sent his son in with a recording device to try to determine the cause of the boy's reported behavioral changes, including physically acting out at school.  What he discovered surprised many people.  While I was heartbroken by what I heard, I can't honestly say I am completely surprised.  I, too, have experience with the same school district, although not the same school or the same teachers and not the same treatment that he was experiencing.  One of the things I heard on the father's website, however, was VERY familiar to me.  They were going to blame the behavior on the parent(s) at home.  This is what was done when my son was in elementary school.

I want to make it very clear that there are WONDERFUL teachers and support staff in our school district.  It is also well-known that "to err is human" and everyone makes mistakes.  However, it is no longer a "mistake" when the same problem behaviors are repeated over and over or you try to cover them up.  We are all supposed to learn from our mistakes.  Doing so can even make us better human beings.  It is the minority of teachers and staff that are causing problems, but they do exist, as I am sure they do in every school district.  The problem is that those people are teaching children.  Children can be, and often are, adversely affected by the way they are being treated in the classroom.

I will admit that I am a parent who considered sending her child to school with a recording device at one point, in elementary school.  I was desperate to try to figure out what was going on with him and knew that what was being reported was inaccurate, based upon what I had been told privately by multiple people.  I was also being treated as an adversary.  I never did use a recording device; neither in the classroom or in the Child Study Team meetings, because I was afraid of the repercussions.  I was hoping that someone would eventually give us accurate information (formally) about what was happening in school.

My son has Asperger Syndrome.  He was diagnosed shortly after he turned 7 yrs old, but we had noticed difficulties and had been trying to get answers for a few years at that point.  I pointed out some of my concerns at the end of preschool (our district has a public preschool).  At that time, I didn't know about Child Study Teams or how to properly request an evaluation, what types of evaluations were done, etc.  I just asked, but since I didn't ask the right person, it wasn't done and I was not given any direction on how to proceed.  I don't blame anyone; I just didn't know any better.  I expected that the teachers would tell me when there was a problem.  I was naive; I had no idea that I was in for a long struggle.

When my son was in Kindergarten, I was told that the teacher was not seeing the same issues that I was at home.  It must just be an issue at home.  I believed that.  Another parent I knew contacted me to warn me about the teacher, as they were having problems with her in another school.  At that time, the teacher split time between two schools (one for a.m. Kindergarten and another school for p.m. Kindergarten).  I decided that I did not want the experience of others to affect my opinion of the teacher, so I didn't respond to get the information.  In hindsight, I wish I had.  I later heard from a former co-worker of hers, who told me that she had been transferred from another school due to a serious incident there.  I won't bother with the details, because I only heard it from another person and have no first-hand knowledge, but I will say that I would never have expected anything less than termination of employment for what she had reportedly done.  Maybe the parents there thought she had been fired, I don't know.  It was a personnel matter, so the school would not have told anyone, just as they didn't tell Stuart Chaifetz that his son Akian's teacher was transferred to another school (she has more recently been placed on an unpaid leave of absence).

I had my own negative experience with my son's Kindergarten teacher.  She yelled a lot.  I heard it for myself, but she was also known for yelling a lot in school.  Other people told me they heard it when they were there volunteering or visiting.  It was a common occurrence.  I also didn't get anywhere with my requests to have my son evaluated that year.  Actually, the teacher not only said she saw no reason to do anything, denied my son had any problems at school and insinuated it was just a problem at home, but also said she would not cooperate with something as simple as a parent/teacher journal for communication between home and school.  Her response was "I don't do that."  The other members of the CST did not question that statement or say anything about it.  It was just left at that.  At the end of the year, we were given a choice of staying with that teacher, who was going to "loop" to 1st grade the following year.  My son has always had a very hard time with transitions, so we asked him what he wanted to do.  He wanted things to remain the same as much as possible, which was not surprising.  I was concerned, but hoped for the best.  During the summer between Kindergarten and 1st grade, my son was diagnosed with Eosinophilic Esophagitis.  This explained his frequent vomiting, chronic stomach pain, etc.

1st grade started off on a bad foot.  My son was very small and couldn't carry all of his school supplies in his backpack, so I took them to the school for him.  He wanted to ride the bus, so I left quite awhile after he did and took the supplies to his classroom.  The teacher was there with the majority of the class when I knocked on the open door.  She yelled at me!  She yelled something to the effect:  "I AM HERE! WE ARE HERE!  WHERE IS ___ ?" (my son's name is omitted).  I was taken aback by the yelling, but calmly and quietly explained that I was just dropping off his supplies.  I told her that my son should be there already.  I said he took the bus, so he should be there, but if he isn't, where is he?  I left the room to try to figure out where my son was, but was a bit frazzled by the way she yelled at me, and in front of the other students nonetheless. You don't talk to (yell at) a parent that way at all, let alone in front of the kids.  Thankfully, my son's bus was just delayed.  It had not arrived yet.  I never addressed that incident with the teacher, nor did I tell the principal (a very young woman who was new to the job and our school), but I should have.  It didn't get better.

Throughout the year, we were having difficulty with homework.  He struggled.  It took hours to get 1st grade work done, which should not happen.  Every night that he had homework was a struggle.  I was told it must just be at home.  I noticed some other issues that led us to suspect a sensory integration issue.  We were able to get an appointment with an occupational therapist at Children's Hospital of Philadelphia.  She did an evaluation, outlined the difficulties in a report and said he needed to get help at school.  I asked for this but was told there was no problem at school.

In the beginning of 1st grade, after rounds of allergy testing to try to pinpoint his food allergies, my son also started an elimination diet.  Unfortunately, that didn't work, and by January of that year he went on an elemental diet (elemental formula and no food) and had an Naso-Gastric tube placed.  This was a very difficult time for him, but he handled it very well.  He had to wear a backpack with a rather heavy feeding pump, which would beep when the tubing kinked and occasionally also leaked.  That was not anything he could help.

Since he missed a lot of school due to illnesses related to his gastrointestinal disorder, and he would need to have accommodations made to reduce the number of days he would miss before either homebound or supplemental instruction would take place, he was eligible for an IEP.  I requested a meeting to discuss an IEP.  The teacher entered the room and announced: "I don't even know why we're here!  There is NOTHING wrong with him!"

At that meeting, I also reiterated the request for a psycho-educational evaluation.  His developmental pediatrician had advised me that he has a "disorder of written expression" and needed to be evaluated by the school.  I was actually told by the child study team that they don't have to listen to what the doctors say.  They would not agree to do the educational evaluation.   I was asked what other evaluations I was insisting upon and I said he needed a speech evaluation and an OT evaluation, as he was already receiving occupational therapy at CHOP and I knew he needed help at school.  They agreed to do that evaluation as well as the psychological evaluation, but not the educational evaluation.  The psychological evaluation was done by the school psychologist and it identified some issues that were consistent with what we were reporting.  It also confirmed that he is very intelligent.  The speech evaluation confirmed his problems with vowel-controlled R.  Speech therapy was recommended.

The OT evaluation was done by someone who was contracted by the school district.  I had left a list of concerns and things that we had been seeing.  One afternoon, I received a phone call.  It was the occupational therapist.  She was calling me from the school parking lot after what she described as "the most difficult evaluation" she had ever done.  She said she saw "every single one" of the issues I had listed and she didn't "believe for a moment that the school (was) not seeing them".  She further advised me that my son's teacher "refused to cooperate" with her.  When the occupational therapist tried to get samples of my son's work to review, the teacher reportedly did not want her to do so.  When she tried to go into his desk to get samples, the teacher told her "There is nothing in there for you!" (she reportedly repeated that statement again, so it was clear).  The OT told the teacher it was her job to do so and she looked anyway.  She told me that she saw everything she needed to see; he was obviously having a problem.   She said he needed all of the help he could get (which was not the first time I had heard that) and she recommended that he continue OT at CHOP, but she also recommended it at school.

I was initially told that they would be able to make the accommodations (OT and  reducing the # of days before homebound or supplemental instruction kicked in) via a 504 plan, and one was written, but the school was then advised by district administration that it was illegal to do so.  The reduction of days before homebound/supplemental instruction begins is a special education accommodation, so that accommodation can only be given via an IEP.  They were required to write an IEP, which is what I had been asking for.  However, I was not told that until the end of 1st grade and was further told we would meet in September of the following year (2nd grade).

He got his G-tube in April of that year, and over the summer we worked on bolus feedings so he wouldn't have to deal with the annoying pump at school.  That helped a bit.  He needed to get a feeding every 2-3 hrs as there is nothing in the formula to digest, so the stomach empties a bit sooner than it would with a formula that contains food proteins for the body to digest.  The school nurse told me she wanted him to get 16 oz at once (the equivalent of two feedings), only at lunchtime.  I explained that was not possible.  I explained that, from experience, it would make him throw up.  His little stomach couldn't handle it and he needed to get the feedings spread out.  She told me we would have to "stretch his stomach" (my son had already told me she said the same thing to him).  I explained that since there was nothing for him to digest, he could not go that long between feedings or it could screw up his blood sugar.   I told her he us supposed to get them every 2-3 hrs.  We, along with the GI, agreed to stretch it to every 4 hrs as long as he wasn't having a problem.  The new written orders were given to her.  If he needed it earlier, he would need to be given it earlier.  The school nurse didn't ask me in advance, but took it upon herself to contact the GI's nurse and ask to have the feeding orders changed.  She said she only wanted him to get one feeding a day, at lunchtime.  Thankfully, the GI nurse told her "No" and explained why she couldn't do that (the same reasons I had already given her).  The GI nurse then called me to let me know what the school nurse was trying to do.  Not only did she try to do this in 2nd grade, but she tried it in 3rd grade, too!  The same GI nurse called me again to tell me and warn me to be careful of what she is doing.  She couldn't believe the school nurse had tried it again.  She knew better!

My son was diagnosed with Asperger Syndrome in July of that year after further testing at CHOP.  It is on the high end of the autism spectrum.  I like to say he's very intelligent with "sprinklings of autism".  That is not an attempt to downplay it though, as those "sprinklings" can cause some real difficulties at times.

I notified the outgoing school psychologist about the diagnosis and spoke with the outgoing special education director about the difficulties we had been having.  He gave me advice and understood my concerns, but was admittedly unable to do anything because he was being replaced.  We would have to start from scratch the following school year with someone who was not familiar with the people or the difficulties.

We met in October with a new school psychologist and a new teacher, who was very nice.  An IEP was written, but again they refused to do the educational evaluation, despite his Asperger's diagnosis.  They didn't change his IEP to reflect autism either.  It remained as OHI (Other Health Impaired, which was due to the Eosinophilic Esophagitis).   At this point, his additional diagnoses also included Anxiety Disorder NOS, OCD, ADHD, and a possible tic disorder.  They didn't acknowledge any academic difficulties, despite the continued struggles with homework, particularly ANY writing.  He was always very good at math, but it was very difficult for him to do any writing at all.  We would often scribe for him at home, even with math.  Early on, I tried to find computer programs that might be helpful for him to use at home.  However, the school would not allow him to use anything there.  There was nothing that I found that was acceptable to use at school and they didn't think he needed anything.

Over the course of the year, I expressed my concerns to the teacher.  She understood, but it didn't seem as though there was much that she could do.  She knew I wanted an educational evaluation.  Sometime that year, I asked to have a social skills evaluation done.  They told me they didn't do that.  They had the social worker do an evaluation of some sort.  She came out to our house to complete one portion and talked to the teacher for the other portion.

At each Child Study Team meeting, I reiterated my request for an educational evaluation, advising that he struggles with writing and is already diagnosed with a disorder of written expression.  At each one, it was denied.  They said he was too smart, his grades didn't reflect the need, he could write well when given a topic he was interested in, etc.  Unfortunately, none of these reasons were sufficient to deny an educational evaluation to a child with a known disability; a child on the spectrum whose parents were describing problems that were consistent with his diagnosis, and were consistent with a learning disability:  hours and hours every night to complete work that should only ever take 30 - 40 minutes (or less).  He would frequently shut down due to the problems he was having with writing.  If I had not spent the time with him at night, his grades would have reflected more problems than they did, but I was not going to stop trying to help him at home.  I was still being told that his problems were only at home.  I didn't have the financial resources to get an independent evaluation, nor could I afford an attorney to help me get it at school and I mentioned that.

During the final IEP meeting of 2nd grade, things took a little bit of a turn.  The school social worker gave her report.  The end result was that it was all just a problem at home, not school.  Well, when she was done, it was time for the teacher to give her input.  After she was done, I asked her some specific questions about his behavior and problems with writing.  She confirmed a problem.  The social worker turned to her and said "Teacher (yes, she called her 'teacher'), you didn't tell me about this".  The reaction was akin to someone going off of a script and throwing off the rest of the cast.  Now, I could be wrong, but from all of the experience I had over the years, it seemed like things were decided ahead of time.  This truly seemed like it threw them for a loop.  So, the social worker's report was completely discounted and we moved forward.  However, they still wouldn't agree to do an educational evaluation.  He was accepted into the gifted program and he was smart, so that seemed to negate the need to do one, at least to them.  I still begged for one, but it was consistently refused.  His anxiety was increasing, too.  We weren't sure why, but it was.  He would shut down and even melt down during after-school events when he had to go back to a classroom with the other kids.  As it turned out, it was a combination of anxiety, social skills problems and the general ASD issues.  I was told in private, by those who were not actually teaching him, that he was having noticeable problems at school.  I was told similar things by people who volunteered there.  Unfortunately, I couldn't mention that or they might experience repercussions.

I believe it was at the very end of 2nd grade (the last day of school) that, in speaking with his speech therapist, I found out that she had experience doing social skills evaluations and would be glad to do one if it was approved.  So, I repeated my request in the fall, explaining that she is able to do them.  She was approved to do the evaluation, which confirmed the social skills difficulties.  He was approved for "lunch bunch", a social skills group that meets at lunch, starting in 3rd grade.

Third grade was a bit better in that his teacher seemed to recognize the difficulties and she did what she could within the classroom.  My son's teachers each received an email from me at the beginning of the year, outlining the difficulties we experienced at home, the difficulties we knew of at school, diagnoses and how they affect him at school, socially, etc.  They were all told of my repeated requests for an educational evaluation and the problems that backed up the request.

During the year, my son was reporting being yelled at by his classroom aide and the students for his increasing OCD issues (popping his jaw, cracking his knuckles, not having desks touching, and many others).  It was not the teacher, though, and I don't believe that the aide understood that his behavior was not something he could just stop.  Until this time, his palilalia (repeating the ends of words) was more pronounced and more frequent.  It seemed to be replaced by other things.  It should be noted that all of his OCD symptoms are brought out by or increased by anxiety, so bringing attention to them or getting mad at them for them is more likely to make it worse.  A person with OCD (Obsessive-Compulsive Disorder) can't just stop doing the compulsive behavior because they are told to do so.  It's a compulsion.  They feel a need to do it and when they are prevented from doing it, the anxiety increases.  There are therapies that can be employed, but yelling at someone or making them feel bad about it is counterproductive.  He was also being yelled at by the kids and the classroom aide for his writing difficulties and taking too long to finish his written assignments.  He told me that the other kids were being told to get on his case about it to push him to get it done and some of the kids in his classroom confirmed that.  That will undoubtedly lead to increased anxiety, which can then leading to increased OCD symptoms and/or shutting down, which is apparently what was starting to happen.  It was a regular ed classroom, and he had no resource room time to get help with his areas of need because they still were not being acknowledged or identified via an educational evaluation.  This was a child who had special education needs that were being ignored and the other kids were being told to get on his case about them.  I am sure that the staff was not properly trained in how to handle these issues, yet training is absolutely necessary to help assure that they are handled properly.

He got through 3rd grade and, despite a repeated request at the end-of-year IEP meeting, the educational evaluation was denied once again.  He was still in the Talented and Gifted program and they provided writing samples that were supposed to prove that he could write "at grade level".  He had a reaction to a food trial that year, which also resulted in pneumonia.  That happened to be when he would have been taking his first NJASK test. I am not sure why, but he was not given the opportunity to make up the test when he returned to school.  That test would undoubtedly have been the evidence we needed to prove that he was having a problem with writing, as the later NJASK tests would prove.

4th grade began well.  He had a really wonderful teacher, but there was no classroom aide, which concerned me, considering the # of kids in the class in addition to my son's issues.  I knew he was not the only child who required various modifications or accommodations in that classroom.  However, I thought she might actually be able to meet his needs, as she really seemed to understand.

My son's teacher was communicating really well with me and we would discuss the difficulties he was having and try to figure out if there were any precipitating factors that were leading to them.  His OCD symptoms were getting worse.  He started compulsive skin picking (which started at the end of the prior year, but was getting worse now that school was resuming again).  She knew the writing caused anxiety and that anxiety brings about and increases his OCD symptoms, so I asked if it was happening during a particular subject or a particular time of day, or if it was consistent through the day.  It was consistent.  He also started to cut his arm hair and leg hair at school.  He was seeing doctors at CHOP about his OCD and he was now on medication to treat his anxiety (which REALLY helped with his overall anxiety).  I had already asked the Child Study Team for a Functional Behavioral Assessment (FBA), which was turned down because they maintained that he was not having any behavioral difficulties in school.  His mobile therapist had observed him in class at one point, in 2nd or 3rd grade, and said he noticed obvious difficulties, but that he needed an evaluation by someone who was trained to recognize what they were seeing (a behaviorist) as the teachers might not recognize some of the more subtle behavioral changes or what leads to other problems.  While I mentioned this to the child study team, my request for a FBA continued to be ignored.

I spoke with the school nurse about the compulsive skin picking and hair cutting too, because he was doing it in her room as well.  He would try to sneak the scissors from the classroom or from the nurse's office so he could trim his arm hair and/or leg hair when no one was looking.  When scissors were taken from him, he'd try to sneak them again.  I discussed it with his doctors at his next appointments, wrote to the teacher and nurse about it and cc'd the guidance counselor and principal.  The doctor suggested "prescribed time" to perform the behaviors in front of an adult, preferably the school nurse.  He could have a certain time to do it and then he wouldn't be allowed to do it any other time during the day.  It is apparently a method that is used to change the behavior and in speaking to behaviorists later, was told it seemed like a reasonable method.  The principal said it was not acceptable, so I told the doctors in hopes that they might have some other suggestions.  The school could have spoken to the doctors, as they already had my written permission to do so.  Instead, they chose to report us to DYFS (Division of Youth and Family Services), asserting that it was something at home that was causing the behavior that was occurring at school.  They used the email correspondence between us in the report.

When DYFS showed up at our house that Friday night, just before Halloween, it was quite a surprise.  When they read the complaint against us, I was in shock!  It was the school who had asked them to investigate us!  Instead of addressing his known issues, they were continuing to blame us and taking it to a much higher level.  I had been BEGGING them to do the evaluations for years, but they refused.  They would rather blame the parents than admit that the child with a known disability is actually having a problem that is in keeping with that diagnosis; one that the parents and the Developmental Pediatrician have already told them about.

I excused myself, went into my basement, and came up with 2 very large binders full of documentation of the academic issues and correspondence, requests for evaluations and help, etc as well as multiple large medical folders full of documentation.  I handed them to the investigators and told them they were welcome to look at everything and I pointed out all of the correspondence to and from the school, which outlined the difficulties he was having, my attempts to have them address them and evaluate, the good communication between the teacher and I, etc.  I was told that they were not sure how to even code the report, but they already knew my son has Asperger's and OCD, so they were aware that the behavior was part of the diagnosis.   The school had even reported his GI disorder and use of a feeding tube to DYFS, which was well-documented with doctors' orders, etc.  I told them all about the problems at school and the years of requests for an educational evaluation, with the repeated denials of same.  I knew that the investigators understood what the school was doing, and I had heard from two different state agencies that our district was "notorious" (their word, not mine) for making parents struggle to get supports for their children.  They were known for making parents hire attorneys to get help.  If the state refers to your district as "notorious", you know you are not alone in the problems you are experiencing.

What made it really horrible though, was that my son had one friend at the time.  That friend was at our house when DYFS showed up.  He told my son that they were "from the government" and they could take my son away.  That boy left and never came back to our house again.  When we were trick-or-treating a couple of days later, he seemed to hide from us inside his house (just peeking through the curtains).  His mother told me she didn't think he had any problem with it, but he went from being my son's only friend, who would have no problem coming over to our house, to never seeing him again.  My son didn't have another friend for the remainder of the school year.  If you have a child on the spectrum, you'll understand how difficult it is for our kids to make friends to begin with, and how devastating it is to lose them.

I called an IEP meeting after that incident.  I explained the situation with the friend and how that affected my son.  I demanded an apology for my son, and I will admit that I was quite angry, but while my anger was evident in the my face and my voice, I never yelled.  Instead of an apology, I got a VERY nasty,  indignant attitude from the principal.  She replied (almost word for word, if not exactly):  "We don't owe you anything!  We don't even have to admit to doing anything.  It could have been anyone."  I replied that it couldn't have been anyone, because they used the private emails, so whoever it was had access to those emails.  The way she spoke to me, with disdain, told me she knew who it was and I am not sure that it wasn't specifically reported by her.

The good that came of it was that the school could no longer pretend there was nothing wrong.  They had no choice but to do the educational evaluation.  Thankfully, we had a wonderful new addition to our Child Study Team.  She was the person who was going to do the evaluation.  When the school psychologist suggested that she limit the tests that she was doing, she replied "No".  She did not want to be limited and wanted to be able to do whatever tests she needed to do to properly evaluate him.  I am ETERNALLY grateful to her for that!

It took approximately 3 months to meet again, and that is a long wait when you know your child might finally get the help he needs.  Can you guess what the evaluations showed?  They confirmed EVERYTHING I had been telling them for the past 5 years!  He has a severe problem with written expression!  He needed help for years and wasn't getting it because they were stubborn and refused to cooperate.  So, they agreed to small group resource room time, although I had been telling them he needed 1:1 help with writing.  I agreed to try the small group and hoped it would work, but it didn't.

The 4th grade teacher continued to be supportive of trying to help my son (and I knew she had nothing to do with the DYFS incident); however, she was expecting a child and had to go out early (January?) on bed rest, so a long-term substitute teacher was hired to take over.  There wasn't much communication from the substitute teacher, which was something that other parents had been complaining of.  I wasn't sure how things were going.  My son seemed to like her, so that was good, and he was finally getting the resource room time.  There were no known incidents at school, but we did have one at an evening school concert, which involved some boys bullying my son and him being the "rule police".  Aside from that, there had been no major incidents.  However, one Friday afternoon he came home and said his teacher told them it would be her last day and they'd have another teacher on Monday.  We don't know if she quit or was fired, but it was sudden and unexpected.  This is where everything went really bad...

The following Monday afternoon, my son came home saying how mean his new teacher was.  He was very unhappy.  I told him she was only going to be there for a short time, and it's important for him to be respectful and listen to her.  He said some things that were not consistent with his IEP, so I told him she just started and she probably hasn't had a chance to read his IEP yet.  I told him to give her some time to learn about the class and get to know everyone, but she would not be there long and then he would have a different long-term sub.  The next day was the beginning of the end of regular education...

He went to school on Tuesday.  Sometime in the early afternoon I received a call to come and get him.  I was told that he was threatening to pour water on the computers and no one could get him to leave the classroom.  When I arrived, very shortly thereafter, he was in fight or flight mode.  The teacher was trying to teach the class and there were other adults who were trying to deal with him.  I walked up to him, put my arm around him, walked him out of the class and into the guidance counselor's office.  We then got to the bottom of what happened.

I NEVER accuse staff of anything and I ALWAYS insist on respect toward the teachers and staff.  I back them up in their decisions in front of him, but if I feel something is wrong, I will speak with them in private.  My son told us that he had to go to the bathroom (badly).  He raised his hand as he is required to do, and when called on, he said he had to go.  He was told he was not allowed to go.  He told the teacher it was in his IEP (which is absolutely true: "Permitted to use the bathroom as needed, as per physician's note.").  She told him she was "not buying it".  He was upset and felt he was being treated unfairly.  He really needed to go to the bathroom badly and knew he had the right to do so, but she wasn't letting him.  He then started to stim.

This was on a hot day and they all had water bottles at their desks.  He started to squirt the water up into the air, repeatedly (a little at a time, from what I was told).  The teacher told him to go to the principal's office.  He didn't want to go; he had seen other kids go in and then come out crying, so he didn't want to go.  He just wanted to go to the bathroom!  They tried to force him to leave the room (for the principal's office) and he must have threatened to squirt them, but when that didn't work, he threatened to pour the water on the computers if they didn't leave him alone.  That was a VERY bad choice.  After he went to the bathroom (which he still hadn't been able to do), he wanted to go back to sitting at his desk and doing his work.  However, he was not handling it appropriately.

I understand WHY it happened and how his processing, communication and social skills difficulties were a large part of the problem, but I want him to own his actions and understand why his choices were the wrong ones.  I believe that while there are reasons for bad behaviors, those reasons can't be used as excuses.  He has to learn to handle things properly and he does need to get consequences for bad behavior.  We discussed it calmly in the guidance counselor's office and I let him know that while I understand that he needed to go and he was upset, he made the wrong choices and there would be consequences, although I told him I didn't know yet what those consequences would be.  He understood that what he did was wrong, but he couldn't think clearly at the time and couldn't think of any other options, such as to leave the room and go to see the guidance counselor (which was a choice he didn't know he had).  I was not going to address the way the school handled it in front of him, but would try to get to the bottom of that later.

We left, and went home.  The principal called me later that night because she had been away at the time.  Another teacher was standing in for her and had tried (unsuccessfully) to get him to leave the room.  She had been told what had happened.  I told her what I saw and what my had son told me.  She said she would talk to my son the next day and would determine what the punishment would be (detention, in-school or out-of-school suspension).  We discussed what had happened, and she told me she had made a conscious decision not to give the short-term substitute teacher a copy of my son's IEP.  She only told the teacher about the things that she felt the teacher needed to know, so the teacher did NOT know that if he needed to go to the bathroom, he was to be permitted to go.  He has a GI disorder and must be allowed to go as needed.  I didn't get into the fact that she had been legally required to provide a copy of the IEP to the teacher. The principal cited my son's privacy in her decision not to provide a copy of the IEP, but the teacher needed that document to know what she needed to do.

We discussed what had happened and I told her that I do think he needs to have consequences, but that detention or an in-school suspension would be more appropriate as he could complete the work he was already behind in (due to missed time and difficulty due to his learning disability).  I told her I don't want him to miss any more work and that being out of school would be more of a reward than a punishment.  The next day, I was told she decided on the out-of-school suspension.  I backed her up, but didn't agree with it.  He fell farther behind in his work that day.  When my son did return to school, the kids had already spread rumors about what had happened.  One of those rumors was that he had squirted acid on the teacher.  Kids will be kids and they will say things like that, but the incident should not have occurred to begin with.

At the same time, unbeknownst to me, they were getting nowhere with small group resource room time and had stopped calling him down for it.  They realized it wasn't helping, but didn't tell me.  In the summer between 2nd and 3rd grade, after a suggestion from the out-going Director of Special Education, I suggested moving him to a different in-district school that had a self-contained classroom and a co-teaching model.  They were very familiar with kids on the spectrum and I had been told good things about the program there.  The child study team told me the Special Ed Director should never have said that and it was not appropriate for my son to go there.  After the DYFS incident in 4th grade, I reiterated my request.  I was told to call them to visit the classroom, but then they changed their minds.  So, when I asked again about it at the end of 4th grade, when they realized they couldn't meet his needs there, I was told it wasn't appropriate for me to visit.  I reminded them that it was originally their suggestion to visit, but their response was that things had changed.  A short time later, after I spoke with the Assistant Special Ed director, I was told I could visit the class, but it was the very end of the year so they wouldn't be doing much in the way of academics.  I visited, I saw a boy my son already knew from a martial arts class he took (they were sparring partners), I was happy with the way the class was run and the knowledge of the staff, so we said we wanted to get him in there.  It was the right move and I only wish it had happened sooner.

Just before the IEP meeting where they agreed to move him to the other in-district school, my son let us know that the school nurse told him he can't keep having his medicine cut up into quarters.  He has always had some problems swallowing due to the Eosinophilic Esophagitis, which she was aware of, and he was 10 at the time, so he needed to have the tablets broken into quarters before giving it to him.  It was no big deal and was very easy to do. I had no idea that it was an issue.  He said the nurse told him that "only babies get their medicine broken up".  Instead of speaking to the nurse about it, since I knew of the prior incidents involving calls to CHOP to try to get feeding orders changed, talk of "stretching his stomach", and so on, I just made sure that it was written into the IEP that his medication is broken up into quarters and why (which the nurse was already aware of).  I also had wording added to ensure that he will not be ridiculed for being unable to swallow his medication whole.  However, I feel for those who do not have an IEP to rely on and are dealing with similar situations.

5th grade went well.  There were some social skills issues with other boys, but they were also on the spectrum, so it was to be expected.  His teachers and educational assistants were fantastic, I thought the school handled things appropriately and I was very happy with his placement.  What was even nicer was that I got what I like to describe as the "warm fuzzies" when I visited.  The staff was extremely friendly.  The Child Study Team worked WITH me, not against me.  I was treated as an equal partner in the team, which is the way it is supposed to be.  It was not an adversarial relationship.  My son was so very happy there, as was I.  It was a comfortable place to be and when we have gone back to visit, as late as last week, we were still greeted with warmth, which is so very nice.   In contrast, when I return to the original school, I still get the "cold pricklies" from some of the staff.  There are WONDERFUL teachers and support staff at the original school and my daughter still goes there, but the overall feeling is completely different.  It does not feel welcoming like the other schools.  It is a stark contrast, as a matter of fact.

We have been trying to put what happened in my son's first school behind us.  Neither my son nor I ever got that apology from those involved, as I was hoping for (and really need to "heal" properly), but several of the staff did approach me privately and told me how sorry they were for how we had been treated there.  I greatly appreciated that, but I also know they had nothing to do with it and it was not in their nature to act that way.  They genuinely care and they do what they can do, but they are limited.  This is something I will get back to:  the need for staff to be comfortable in reporting the inappropriate behavior and actions of other staff members (including members of school administration if necessary) without fear of reprisals.

My son moved on to 6th grade at our in-district middle school, an IB (International Baccalaureate) School, which has a communication and pragmatic social skills (CAPSS) class for those who need it.  They have a special ed teacher and educational assistants for those in the CAPSS class.  The kids go to the regular education classrooms with either the special ed teacher (who floats between the classrooms) and/or the educational assistants.  The difference is that they don't have foreign language classes; they have social skills class instead.  His 6th grade teacher was wonderful.  She is also a behaviorist, so she is the perfect person for the job!  There were, however, learning curves as she got to know him and as we got to the bottom of a new diagnosis, migraines (he had all of the weird migraine symptoms without the actual headaches), and while that caused some initial concern, it all worked out fine.

It was an understandable assumption that he was making it up (having trouble walking, feeling dizzy/off-balance, feeling like he was going to pass out, etc.), but I was glad that I went to the lunchtime meeting they were having with him to discuss "the boy who cried wolf", and so on.  I backed them up, but noticed that he seemed to be having a real problem.  He didn't seem quite right, but I am his mother, so I am more likely to notice the more subtle things.  He was slumped over the chair and seemed really out of it (legitimately out of it).  I asked to take him to the nurse to check him and I would bring him back if he was ok.  They agreed, but came down soon after to get him back upstairs.  He collapsed across the chairs as soon as I got him to the nurse's office.  He was not faking.  I took him back to the bed in the closed in area of her office (private area).  I noticed his eyes were darting back and forth very quickly, almost shaking (I later learned this is called "nystagmus").  I had never seen that before but I knew it was not something he was able to control.  I asked the nurse if she had seen his eyes.  She hadn't seen the shaking but noticed that he seemed like he couldn't focus his eyes.   I told the staff that I didn't know what was happening, but that what I was seeing wasn't right and wasn't something he could control.  I told them I was taking him home and getting him to the doctor.  I know they thought he was getting one over on me, but he wasn't.

He was diagnosed with migraines that night and we were referred to a neurologist. The pediatrician reminded me that he is medically complex and told me I know better.  She knows all about what we've been through with his medical issues and the struggle to figure it all out.  She also knows he doesn't make these things up; as she put it, he is just more in-tune to things that are going on in his body, even if he can't describe what's happening.  He was put on migraine medication when we saw the neurologist.  It took a very long time to get the very confusing symptoms under control and the school staff was very good about it.  We tweaked the IEP as needed to handle time out of the classroom (if he had to spend a great deal of time in the nurse's office), time out of school, etc.  The school psychologist, teacher, nurse, educational assistants and principal were absolutely wonderful.  They worked with me and they did their best to accommodate his medical and educational needs.

Again, it was a very understandable mistake to think he was being dramatic, but they recognized that it was a mistake, which is the important part.  We all make mistakes and I have made my fair share too.  As I said at the beginning of this story, the key is to learn from them, and we ALL did in this case.

The teachers, educational assistants, school psychologist, speech therapist (who also handles social skills), nurse (who left later that year), etc, are all WONDERFUL.  I absolutely love that school.  It is another school where I get the "warm fuzzies".  I was also treated like an equal member of the child study team and they were really terrific.  However, in 7th grade, it was clear that they were no longer able to meet his needs.  I won't go into the details of some of the things that led to it, but I am just grateful that they recognized the need for private placement and recommended it.   That was a blessing.  He is now in a private school and is thriving.  There are only 2-4 kids in each of his classes and, on occasion, he is the only one, so he has been able to get that 1:1 help he needs.  The staff at his new school understands his needs and they are able to meet them.  He has grown academically, emotionally and socially in the year that he has been there.  I have renewed hope that he will grow into a well-educated, well-adapted, caring and productive member of society.

I still love the local middle school that my son went to and hope that my daughter will be able to go there one day, but the students who want to go are picked in a lottery, so it's the luck of the draw.   Her current elementary school teacher is absolutely amazing.  She would have been a perfect person to teach my son as well.  She really understands the individual needs of the students, she understands the importance of treating each other with kindness and respect, she tries to help boost the kids' self-confidence and self-image and she has a wonderful positive behavioral plan in place for the entire classroom.  I just wish we could clone her!  I wish every child had the chance to be in her class.  I truly believe teaching was her calling.  She is making a positive difference in the lives of her students.

I do agree with Stuart Chaifetz that we need changes to make it less difficult to fire teachers who act inappropriately and would otherwise be let go if not for tenure.  It is important to note though, that those teachers are few and far between.  I also believe that we need mandatory training for ALL staff who deal with children with any disabilities, as they exist in every school, whether they are identified or not.

The staff needs to understand the psychological effects of their words and actions toward and in front of the children, whether disabled or not.  For example, simply telling kids "It stinks to be you!", whether meant to be derogatory or not, can have a negative effect on a young child.  If heard often enough, or if something else is going on in their lives, they might begin to think "You know what, it really does stink to be me!".  I know a teacher who frequently says that.  I know she doesn't mean to hurt anyone's feelings, but if the students are hearing it frequently, it can get to them, and it has.  As adults, we need to choose our words carefully when speaking to or around children.  The teachers and staff should be trying to help boost their self-esteem and self-image, not knock it down.

Yelling at the kids is not acceptable.  If you are dealing with an elementary school child who is obviously upset and sobbing uncontrollably, you don't yell at them to stop crying or to grow up.  That doesn't work and it is not appropriate.  That only makes it worse!  All staff needs to be properly trained in how to deal with these situations.  I witnessed that as well!  Our advocate, who was with me at the time, asked other staff members to step in and say something to the woman to stop that treatment, but they wouldn't.  They looked at him as if he had two heads.  After our meeting, he stayed to speak to the principal about the problem, but I was not privy to the outcome of that discussion.  I did, however, hear him mention that he has a duty to report situations like that.  You can't stand by while a child is mistreated, especially in an educational setting.  Doing so could be construed as complicity.

Honesty in evaluation procedures and the evaluations themselves also need to be mandatory with absolute consequences for violations of IDEA.  There can be no collusion, and if anyone suggests inappropriate handling of the evaluations, etc, they need to be corrected immediately and/or reported.  This goes back to safe, confidential reporting.

Not only does it need to be easier for staff (district employees and subcontracted) to confidentially report inappropriate conduct, but it should be required and it should be able to be done without the fear of reprisals, whether reporting their peers or a member of school or district administration.  Our teachers and other staff need to be able to safely and effectively advocate for the kids.

We have some very well-qualified people in our district who would be good choices to help train the rest of the staff.  One of my son's former special education teachers is also a behaviorist and, in my opinion, should not only be involved in training, but helping to oversee how the other teachers are dealing with the special education students in their classes.  His 5th grade special ed teacher is phenomenal, too.  There are very experienced behaviorists that are currently under contract with the district who can help to train the staff as well.  We have some wonderful regular education teachers who have great insight and have been given the recognition they deserve for their teaching practices.  My daughter's current teacher is one of them.  She would be another perfect choice to help train other teachers.

There is a Center for Autism Research right across the bridge in Philadelphia.  Dr. Anthony Rostain (psychiatrist at CHOP and University of Pennsylvania) is an autism expert and, if interested or able, he would be a good choice to train staff or to direct the district to other experts who may be able to do so.  David P. Osterhout  (MSW, AAFC, CCBT, BCD, QCSW, DCSW, LCSW, LSSW) is a very experienced local counselor and educational advocate in Marlton, NJ.  He specializes in neuro-developmental, learning and behavior pathology and neuro-psychiatric disorders.  He was previously with the Philadelphia Child Guidance Clinic (which later merged with CHOP), as was at least one very good school psychologist in our district.

Dr. Rostain also spoke very highly of David Osterhout and recommended his use by other CHOP doctors as a resource, stating he was one of the best resources they could have and they should use him as much as they can, as they could learn a lot from him.  He would be another phenomenal choice to help train the district staff.  He has experience with the difficulties that the students and parents have come up against in various school districts, so I also believe he could give suggestions as to how to work together to avoid some of problems to begin with, instead of having to scramble to repair the damage, send kids out-of-district due to the problems they have faced, etc.  However, if, as it seems, the district would not pay to have experts such as these train the staff, but instead would like to work with the people who are already employed there, we have very experienced school psychologists, etc., to choose from.  The school psychologist in my son's last school, the middle school, is EXTREMELY knowledgeable and experienced and I know she would do a very good job of helping to train staff.  The problem is that any training we currently have is optional.  It MUST be MANDATORY!

I just hope that all of the publicity in this case will bring about the positive changes that our district, as well as so many across the country, need.  Again, we need mandatory training (which will undoubtedly require increased state funding, which our district has not been able to get their fair share of as it is), a safe and confidential way for staff to report inappropriate behavior of their peers and even those in administration without fear of reprisals, and it must be mandatory to step in and advocate for a child who is being treated inappropriately instead of believing or acting as though it isn't their job to do so.  Just as we want our children to speak up and defend others who are being treated unfairly, it is important that the teachers and other staff be able to speak up and defend the kids.  It is also important that when they do speak up or report incidents, they are taken seriously.

I don't expect many people to see this post, and I expect even fewer will actually read the entire thing as it is very long and detailed.  However, it was rather cathartic to write.  I have written about it before, as the incidents occurred, but only in emails to teachers and administration, detailing the problems and begging for help.  I am not looking for or expecting any publicity.  If I was, I would be boisterous; but I do hope that the story is read by someone who can make the necessary changes that improve the laws and requires mandatory, ongoing training and reporting.

Friday, April 20, 2012

CHOP Food Allergy Education Event May 5, 2012


Here is another CHOP event for people dealing with food allergies of any kind: 
http://www.njpaeos.org/index_files/Invitation_CHOP-May_5th_Food_Allergy_Education_Event.pdf

I just found the invitation in my inbox and am late in passing it along. 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 njpaeos.org website accordingly, so you can find the info and flyer there if you are interested.

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. 


Here is the info: 

The Children’s Hospital of Philadelphia Food Allergy Center Family Committee and Physicians cordially invite you to attend:

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.

During this event we look forward to:
  • Sharing the newest developments and research for Immunoglobulin E (IgE)-mediated food allergy, Eosinophillic Disorders and Food Protein-Induced Enterocolitis (FPIES).
  • 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.
  • 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.

Event Details:
When:
 Saturday, May 5th from 10:00am-12:30pm
Where: Colket Translational Research Building - Room 1200 A & B
3501 Civic Center Boulevard, Philadelphia, PA 19104
Parking Located Under Wood Building. Courtesy Passes Provided

There is no cost to attend the event, but CHOP gratefully welcomes all donations at the door or at: www.giving.chop.edu (**Please be sure to specify FOOD ALLERGY)
Donations will be directed towards the CHOP Food Allergy Center’s initiatives. 

Bring your expired Epi-Pens! There will be a demonstration on proper use and disposal of Epi-Pens.

"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."

To RSVP, please email: Familyday@email.chop.edu 
and please provide the following: Your name, your mailing and email address and number of attendees. Space is limited.

Please note: this event is not suitable for young children due to the format of the event.

If you have any questions, please call (215) 590-2549.
Please RSVP no later: April 28th.