Eos Mom - Life With Eosinophilic Esophagitis

Holidays with Food Allergies and Eosinophilic Esophagitis

2011-11-30T07:33:00.001-05:00

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.

I just came across a wonderful PDF booklet with allergy-friendly suggestions for celebrating Christmas. It was put together by Kids With Food Allergies: http://www.kidswithfoodallergies.org/KFA-Celebrates-Christmas.pdf 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.

There is also a PDF for celebrating Chanukkah: http://www.kidswithfoodallergies.org/KFA-Celebrates-Chanukah.pdf, which includes two latke recipes (white potato and sweet potato).

They have various pamphlets with ideas for dealing with the different holidays, as well as an article 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."
http://www.kidswithfoodallergies.org/resourcespre.php?id=120&title=food_allergy_restrictions_during_the_holidays.

Just before Thanksgiving, they also provided the following allergy-friendly recipes:

Just-Sugar Lollipops: http://www.kidswithfoodallergies.org/allergy_free_lollipop_recipe.php

Homemade Candy Canes: http://www.kidswithfoodallergies.org/candy_cane_recipe.php

Sugar Sculptures: http://www.kidswithfoodallergies.org/allergy-free-sugar-sculpture-Christmas-tree.php

Sugar Shapes: http://www.kidswithfoodallergies.org/allergy-free-sugar-shapes.php

Hokey Pokey or Honeycomb: http://www.kidswithfoodallergies.org/allergy-free-sugar-honeycomb.php

You can find lots of wonderful allergy-friendly recipes at:

Kids With Food Allergies: (many require membership, which is quite worthwhile, but some are free).

FAAN (Food Allergy and Anaphylaxis Network) also has plenty of recipes on their site

LivingWithout Magazine (lots of allergy-friendly and gluten-free recipes in their magazine and on their site)

Cybele Pascal's website and cookbooks: http://www.cybelepascal.com/

APFED: Recipes and suggestions and their "Extreme Cooking for Exceptional Diets" cookbook

I also have some of my personal cookbook recommendations in the EosMom Store.

There are so many more resources; too many to list, but I think this is a good start and hope it will be helpful.

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.

My daughter still has to avoid dairy, and I found a really good french toast recipe, which we made on Thanksgiving morning and will again on Christmas. The recipe is found on the carton of So Delicious Coconut Nog, or you can also find it here, on the manufacturer's website. 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.

Whichever holiday you are celebrating, I wish everyone a happy, healthy, and peaceful holiday season and all of the best in the coming year.

True Life | I'm Allergic To Everything

2011-08-20T14:03:00.002-04:00

True Life | I'm Allergic To Everything: 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?

Zeke is from Texas and has Eosinophilic Esophagitis. He and his family have also co-founded a charity called "Angels For Eosinophilic Research Alliance" http://www.angelsforeos.org

True Life - MTV Shows

Eosinophilic Esophagitis: Finally seeing the light at the end of the tunnel

2011-08-01T17:45:00.007-04:00

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.

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.

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) DATES! 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.

Flovent (fluticasone) 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!

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.

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).

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.

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).

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.

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.

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.

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.

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 SOAR and accomplish whatever he attempts to do.

Special Education Laws and Resources: IEPs, 504 Plans, Classroom Accommodations for ADHD Children | Information on Attention Deficit Symptoms, Treatment, Diagnosis, Parenting, and More - ADDitude

2011-07-20T07:28:00.002-04:00

Special Education Laws and Resources: IEPs, 504 Plans, Classroom Accommodations for ADHD Children | Information on Attention Deficit Symptoms, Treatment, Diagnosis, Parenting, and More - ADDitude

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.

http://www.additudemag.com/adhd/article/8417.html

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.

New name for the NJ/PA Eosinophilic Website

2011-07-16T20:16:00.000-04:00

NJPAEos.org, which I originally created several years ago to help those in the NJ/PA Eosinophilic Support Group, is now called "NJ/PA Eosinophilic Information" (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.

Please feel free to visit the site. Hopefully the information provided will be helpful.

Eosinophilic esophagitis: Updated consensus recommendations for children and adults

2011-07-11T12:09:00.003-04:00

"Eosinophilic Esophagitis: Updated consensus recommendations for children and adults"
(from The Journal of Allergy and Clinical Immunology Volume 128, Issue 1 , Pages 3-20.e6, July 2011)

http://www.jacionline.org/article/S0091-6749%2811%2900373-3/fulltext

New consensus recommendations for the diagnosis and management of EoE! This is an important article to read if you are dealing with Eosinophilic Esophagitis!

Egg Allergy? How to substitute egg in recipes

2011-06-14T09:00:00.002-04:00

Egg Allergy? How to substitute egg in recipes

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.
http://www.kidswithfoodallergies.org/resourcespre.php?id=104&title=Basic_recipe_substitutions_for_egg_allergy

Study reveals long-term outcomes for children with eosinophilic esophagitis (EoE)

2011-06-05T15:39:00.003-04:00

Important article from Cincinnati Children's Hospital: http://www.cincinnatichildrens.org/health/subscribe/ped-insights/06-11/eosinophilic.htm

June 2011
Study reveals long-term outcomes for children with eosinophilic esophagitis (EoE)

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.

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.

“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.

“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.

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.

What is EoE?

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.

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.

Researchers now estimate that about one in every 1,000 people in the U.S. suffer from EoE. Cincinnati Children’s encounters about 30 cases each week.

“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.”

Study method

Researchers at Cincinnati Children’s embarked upon a novel project to examine the natural history of EoE during the transition from childhood into adulthood.

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.

The study collected 209 completed questionnaires.

Key findings

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.

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.

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.

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.

Next steps

This paper reports the longest natural history study of pediatric EoE to date.

“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.”

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.

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.

“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.”

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.

How to Get Tax Deductions for Food | eHow.com

2010-12-27T18:27:00.006-05:00

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.

To clarify, as it isn't listed in the article, as per Publication 502 on the IRS website, " You can include the cost of special food in medical expenses only if:

1. The food does not satisfy normal nutritional needs,
2. The food alleviates or treats an illness, and
3. The need for the food is substantiated by a physician.

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"

How to Get Tax Deductions for Food | eHow.com

If you have celiac disease where you must avoid eating gluten, you may be able to claim the expense of gluten free foods on your tax return. Read further to see if you might qualify for a tax deduction for your gluten free food purchases.

Difficulty: Moderate

Obtain an official diagnosis from your doctor in writing that you have celiac disease. Without that you cannot claim a tax deduction.
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.
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.
Try using your insurance's flexible spending account. 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.
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 answer from someone whether you can get reimbursed for your gluten-free food.

Tips & Warnings

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.

Sweet Freedom Bakery: It's Gluten-Free and Allergy-Friendly!

2010-11-30T10:29:00.004-05:00

Recently, a friend passed along a link to a new bakery in Philadelphia, called Sweet Freedom Bakery. 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.

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.

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.

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.

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.

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.

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.

Sweet Freedom's website is http://sweetfreedombakery.com.

Dealing With Food-Filled Holidays When You Can't Eat Like Everyone Else

2010-11-24T10:15:00.004-05:00

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.

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.

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.

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.

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.

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 The Allergen-Free Baker's Handbook 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.

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.

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 APFED's website under their Advocacy tab. You'll find A Guide to Celebrations Without Food .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 Living Without Magazine which can also be found online at http://www.livingwithout.com/. They have some great ideas. I also have some cookbooks listed here under "Helpful Books, Handouts and Cookbooks", which are available online at Amazon.com and are likely in your local bookstores as well. Kids With Food Allergies also has a lot of good recipes available to members, and they have some free Thanksgiving Survival Tips.

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 Python once said, "Always Look on the Bright Side of Life." (Do do, do do do do do do...)

New Food Trial Under Way: Beans, Buckwheat and Berries, Oh My!

2010-11-23T10:51:00.007-05:00

The latest food trial is under way. As the title of this post has already revealed, we are working with beans, buckwheat and berries. In addition, we have thrown in peas and flax. Peas have provided us with a new margarine, Earth Balance buttery spread (soy-free), as well as a new cheese substitute, Daiya cheese. Both are dairy-free and use pea protein in lieu of soy. Even better is that we can now buy a frozen mac & "cheeze". Amy's brand has several versions, but they now have a gluten-free version that is made with Daiya cheese. They still have one with soy cheese, so you have to be careful to get the correct one. Oh, and there's a hot buckwheat cereal that he is really enjoying. I have only found it at Wegman's so far. Not even Whole Foods carried it. It's Pocono brand Cream of Buckwheat Cereal.

Peas and beans have opened up a larger variety of options for my son. Bob's Red Mill G/F bread mix, which is made with garbanzo and fava flour, is amazing! I would eat it! Actually, I devour the end pieces when the loaf is fresh from the oven. It definitely beats the frozen rice bread, not that I'm complaining about that because it was a bread and was better than none at all.

I made Blueberry Boy Bait coffee cake again over the weekend. My problem is that I want to eat the whole thing myself! It's delicious! It's a recipe from Cybele Pascal's The Allergen-Free Baker's Cookbook. It's hands-down one of my all-time favorite recipes. I use Bob's Red Mill G/F flour instead of the mixture that the author uses. That gives him his garbanzo and fava beans! Sneaky, huh! :-) You can't taste any beans in there. It's amazing! I also just received my first issue of Living Without Magazine, and found a recipe for brownies with black beans! I may have to try that one, too. That would be another sneaky, but delicious way to get those things in him.

The big challenge is how to get a variety of beans into him every day. I have been alternating the beans from day to day and making meals that revolve around the beans. However, he's 12 yrs old. I think that should say it all. He isn't eating enough beans. So, it looks like I will have to start pureeing a variety of beans together and putting them through his feeding tube to make sure he gets enough every day. I really hate having to do that, but that is the one perk of having a g-tube. Yes, I like to look on the bright side of things as much as possible. When he gets tired of a food or just doesn't like a particular food that he's trialing, I can cook it, puree it, and get it in through the feeding tube, thus bypassing his taste buds.

Now, for the bad news. While we had increased his food intake over the summer, thereby decreasing his enteral feedings (elemental formula), he lost weight. He lost 10 lbs over the course of 2 months in the summer. So, we increased his feedings by a box a day. He lost another 5 lbs in a little over a month. He's back up to getting 2 boxes of formula before bedtime. We are trying to avoid the overnight feedings, as they might then throw off the desire to eat in the morning. Hopefully the increased intake of both food and formula will be sufficient to help him gain some of it back. He doesn't need to gain all of it back right away, but at least 1/2 would be nice. He should be due for a growth spurt soon, and his body will need adequate nutrition for that to happen.

Before we found out he had Eosinophilic Esophagitis (EoE), his body was not getting the nutrients it needed to gain weight and grow as he was so inflamed inside that his body wasn't able to properly absorb what it needed. When he stopped eating and went on elemental formula only, his body was getting what it needed, so he gained and grew at an amazing rate as his body caught up to where it should be. He seems to be falling behind a little bit again, but I was not concerned until he lost so much weight (and so quickly). He is turning into a skinny minnie again, but it will work out fine as we can give him what he needs one way or another. We just need to be more careful that he is getting what he needs.

The next scope won't be until sometime in January. CHOP has advised me that they are now waiting 8 weeks before scoping (8 weeks of eating each and every food in the trial every day). They are finding that more patients take longer to react than they initially thought (it can take awhile for the eosinophils to build up in the esophagus), so the 8 weeks should be sufficient. In this particular food trial, I'm breaking from the usual protocol and throwing all of the foods together because he takes 4 weeks to show a reaction anyway, so if he reacts, I'll just remove the most likely culprit and see if he gets better. If not, I'll remove another. That's backwards, but these are not the most likely triggers for him. He was fine with the bread, margarine and "cheeze" over the summer when we were taking a break, so it's unlikely that he'll react to the beans and peas. The berries, on the other hand, are the ones I would pull first if he has a problem. Hopefully this food trial will work out well.

Oh, the Joys of Health Insurance Changes and Our Economy!

2010-11-18T11:43:00.005-05:00

Well, while I think that health care reform is a wonderful idea and is definitely needed, the insurance companies have used it as an excuse to raise premiums, thereby forcing people to pay up or reduce their coverage. In our case, my husband's employer had to choose the higher deductibles, co-pays and co-insurance to keep their employee's premiums about the same (which still increased a bit). That was a wise decision on their part, but there was no way to get around the problems those changes pose. I have heard calls to repeal health reform, but doing so will not reduce the premiums. They are up and the insurance companies will not just bring them back down to where they were. They are here to stay. Hopefully the health care changes will make a big difference when they are implemented.

So, despite no increase in income, there are lots of increases in expenses. While it is easy to say "trim the fat", what if there is no more fat to trim? What if the fat is the outlay of money for medical bills? How do you cut that? Do you stop the medical treatment that is helping? In the case of Eosinophilic Esophagitis, where you need to do food trials and have endoscopies to determine if those foods are safe, do you stop the food trials and just be happy with the formula (if it's covered by your insurance)? Do you choose to push forward because your child's well-being relies on getting more "normal" foods so he/she can eat in the lunchroom and socialize with others vs having to take a box of formula and a feeding bag wherever he goes and explaining it to everyone? Do you choose to push forward and face those medical bills or do you choose to pay the mortgage to keep a roof over your heads and buy food to sustain the rest of the family?

What if you also have other issues to deal with in addition to the medical ones? What if you also have to address educational issues, mental health issues, developmental issues, therapies and so on? Sometimes, insurance doesn't cover some or all of the latter 3, and it never covers the educational needs. Those educational issues that are not handled by the schools (or necessitate legal representation to get the schools to handle) are out-of-pocket expenses, and they are very costly. These are often things that need to be addressed right away, yet what if you can't do that and make ends meet? There are so many more potential expenses, depending on the individual family.

On top of all of that, what if you are a single income family, not by choice but by necessity. What if the 2nd spouse wants to work (REALLY wants to work), but with all of the medical needs, etc, that person would not be reliable and would not be able to keep a job (if they were even lucky enough to find one)? What if only one spouse could work and bring home a steady paycheck, and the other had to be home (and constantly on-call) to take care of all of the other needs of the family?

This is the reality of so many people. There used to be at least a little help available to some in the form of minimal stipends and/or programs that varied by disability, state, etc., but with all of the cuts being made due to the economy, that help is being phased out or has already been cut too. So, there is even more hardship when those little lifelines are cut.

I have no answers, only questions. If I had answers, I would be sharing them with the world!

A couple of new informational EoE brochures added

2010-08-22T19:21:00.003-04:00

I just came across some links to new PDF files with informational handouts from TIGER and NASPGHAN, so I added them to the retitled Helpful Books, Handouts and Cookbooks page.

The first, from The International Gastroinestinal Eosinophilic Researchers (TIGER), is a trifold brochure.
http://www.cdhnf.org/user-assets/documents/pdf/A%20Guide%20to%20Eosinophilic%20Esophagitis%20in%20Children%20and%20Adults.pdf

The second, from North American Society for Pediatric Gastrointestinal Hepatology and Nutrition (NASPGHAN), is another helpful handout.
http://www.naspghan.org/user-assets/Documents/pdf/diseaseInfo/New%20brochures/EE-%20ENGLISH-E.pdf

These may be helpful to those who need to better explain the disorder to their friends, family teachers, employers, etc. Goodness knows something easy to read from an official source is helpful to give out when people don't understand.

Kids With Food Allergies Annual Family Fun Expo coming to North Wales, PA

2010-08-20T12:29:00.000-04:00

Kids With Food Allergies Hosts Annual Family Fun Expo; Dance-a-Thon, Live Music, Book Signings and Fun for Children

Kids With Food Allergies (KFA) will host its annual fundraiser Creating Better Lives Today - Family Fun Expo & Dance-a-Thon on Sunday, Sept. 12, 2010, from 1 to 3:30 p.m. outside the Whole Foods Market in North Wales, Pa. With 800 adults and children expected, it promises to be a day of food and fun for all.
One in 25 Americans has a food allergy and, when it comes to kids, those numbers are even higher. One in 17 children under the age of 3 has a food allergy, and they sometimes don't outgrow it. In all, more than 3 million children deal with this medical condition every single day. And the number of people in general who are being diagnosed with food allergies is on the rise. In fact, the incidence of peanut allergies has tripled in children between 1997 and 2008 according to a recent study.

KFA, a nationwide charity, is dedicated to providing day-to-day education, solutions, and assistance to children and their families who live with food allergies. This event is KFA's most important fundraising event for the year, raising funds to enable the charity to continue to offer free future events, educational materials and sustain its active online community. Visit http://www.kidswithfoodallergies.org to learn more.

"Food allergies often prevent children and their families from fully participating in social events that many of us simply take for granted - like fairs and carnivals - due to the allergy risks," said Lynda Mitchell, President of Kids With Food Allergies. "This Family Fun Expo is designed to be an allergy-friendly event. Children can fully participate and enjoy meeting other children like themselves in a safe and joyous atmosphere while raising funds to support our mission."

A Day of Good Food & Fun (For All!)
The Family Fun Expo will feature an afternoon full of food, fun and education. It will kick-off with a fundraising dance-a-thon for children followed by a live, interactive music performance and puppet show by Kyle Dine. Dine's original songs educate and empower those living with food allergies. In addition, renowned allergen-free expert and author Cybele Pascal will be signing copies of her latest best-selling cookbook, The Allergen Free Baker's Handbook, as well as speaking with participants. Personal Chef Theo Petron will also be on-hand to prepare a delicious dish free of the top eight food allergens responsible for 90 percent of all allergic reactions: wheat, milk, eggs, soy, peanuts, tree nuts, fish and shellfish.

Many allergy-friendly businesses are attending, and showcasing their products and services; all are designed to provide a day of fun, education, share resources, and raise funds- so that all kids can enjoy safe, great food. Additional activities for children will take place during the event, including a special appearance by PBS Kids' character Arthur.

Whole Foods Market, North Wales, is providing the outdoor venue for this fundraising event. "At Whole Foods Market, we recognize the challenges faced by families living with food allergies and we are pleased to bring safe and healthy options to the table," said Danielle Smith, Marketing Specialist and Community Liaison. "We hope that this event will both increase the understanding and compassion of the community, and also help families by providing awareness of new allergy-aware products and services."

For more information about the event, call 215-230-5394 or visit Kids With Food Allergies at http://www.kidswithfoodallergies.org .

Kids With Food Allergies (KFA)
Founded in 2005 as a non-profit charity, KFA is a national organization of 20,000 families raising children with food allergies. KFA focuses on day-to-day support that helps children with food allergies and their families improve their quality of life through education, peer support, food and cooking assistance, and family activities. Its interactive website provides a powerhouse of resources, including the nation's largest online support community for families; quality parent education materials edited by a multidisciplinary medical advisory team; and an online collection of more than 1,000 "allergy-friendly" recipes. The recent, unprecedented rise in food allergies has spurred the organization's rapid growth.

Cybele Pascal
Cybele Pascal is the award-winning author of The Allergen-Free Baker's Handbook, and the Whole Foods Allergy Cookbook. She has been a guest on The Martha Stewart Show, the Food Network, the Today show, ABC News, Good Morning America Health, and NPR.

She is a regular contributor to Living Without; the magazine for people with allergies and food sensitivities, and her recipes have appeared in many national publications, including Good Housekeeping, Allergic Living, and NY Parent. She has also written regular columns for Oxygen Media, AOL and Lime.com. In addition to her culinary work, Cybele is also an award-winning playwright. Pascal is the proud mother of two sons, Lennon and Montgomery. She lives in Los Angeles with her food-allergic family: husband Adam; sons Lennon and Monte; and their dogs, Izzie, and Carly (who also has food allergies). For more information on Cybele, visit http://www.cybelepascal.com .

Kyle Dine
Kyle Dine is the world's first dedicated "allergy musician" who performs songs for children at-risk for anaphylaxis, a life threatening allergic reaction. With allergies to peanuts, tree nuts, eggs and fish, he knows firsthand what it is like growing up with food allergies. The songs that he writes and performs are all focused on key educational messages expressing the importance of managing allergies safely. Songs such as "Smellephant the Allergic Elephant," "Epi-Man," and "I've Got Allergies Under Control" ultimately convey the theme to stay safe and stay positive. His CD is aptly titled, "You Must Be Nuts!" and is available through his website: http://www.kyledine.com or digitally through iTunes. He is currently working on a follow-up album titled "Food Allergies Rock!" which will be released this fall. For more information, visit http://www.kyledine.com .

Whole Foods Market
Founded in 1980 in Austin, Texas, Whole Foods Market (http://www.wholefoodsmarket.com), a leader in the natural and organic foods industry and America's first national certified organic grocer, was named "America's Healthiest Grocery Store" in 2008 by Health magazine. The Whole Foods Market motto, "Whole Foods, Whole People, Whole Planet" captures the company's mission to find success in customer satisfaction and wellness, employee excellence and happiness, enhanced shareholder value, community support and environmental improvement. Thanks to its 53,000 Team Members, Whole Foods Market has been ranked as one of the "100 Best Companies to Work For" in America by FORTUNE magazine for 12 consecutive years. In fiscal year 2008, the company had sales of $8 billion and currently has more than 275 stores in the United States, Canada and the United Kingdom. Whole Foods Market, Fresh & Wild and Harry's Farmers Market are trademarks owned by Whole Foods Market IP, LP. Wild Oats and Capers Community Market are trademarks owned by Wild Marks, Inc.
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REGID - Registry for Eosinophilic Gastrointestinal Disorders

2010-07-19T07:12:00.016-04:00

There is now a Registry for Eosinophilic Gastrointestinal Disorders (REGID) at http://regid.org/

Eosinophilic Esophagitis (now abbreviated EoE) and Eosinophilic Gastrointestinal Disorder (EGID) patients can register soon, but they are still working on the registration/application. REGID was funded by the NIH and is a national registry of people affected by EoE / EGID. More info can be found on their site, as well as a short video by two of the Drs involved (from Cincinnati). The following paragraph was taken from their website:

"The Registry for Eosinophilic GastroIntestinal Disorders (REGID) is a collaboration of medical centers, professionals, families, and individuals whose mission is to improve the knowledge, research, and outcomes for people living with eosinophilic gastrointestinal disorders. REGID is not only a national registry of people affected by eosinophilic gastrointestinal disorders but also a forum to enhance the connection of people to resources and research."

They also have informational pages about Eosinophilic Esophagitis and EGID. It sounds like it will be a beneficial resource! Please continue to check back on the site and when it is all up and running, be sure to register all those diagnosed with EoE or EGID as this will not only lead to a better count of how many people have the disorders, but may lead to further research grants specifically for the disorders!

What An Amazing Week for Eosinophilic Disorders and Food Allergies in General!

2010-07-15T09:08:00.002-04:00

WOW! What a week full of amazingly wonderful news! First, the top 200 charities were announced in Chase Community Giving on Tuesday, July 13th. Out of 500,000 charities that entered, APFED (American Partnership for Eosinophilic Disorders), CURED (Campaign Urging Research for Eosinophilic Disease) and Kids With Food Allergies were ALL voted into the top 200 and they will receive $20,000 EACH. That is $40,000 for Eosinophilic Disorders and a total of $60,000 to benefit food allergies in general!! Every vote really did count in this one and it was a real nail-biter, but thankfully it was also a huge success!

Well, the good news doesn't stop there! On July 14th, there was a phenomenal NIH press release: "NIH Expands Food Allergy Research Program Consortium of Food Allergy Research Renewed With a Five-Year, $29.9 Million Grant!" That now also includes research into Eosinophilic Esophagitis and Eosinophilic Gastrointestinal Disorders via CHOP, Cincinnati Children's, and University of Colorado, Denver, which have the leading Drs in the field treating & researching EE/EGID! WOOHOO! This is truly a week to celebrate, as EoE (formerly called EE) and EGID are finally going to get the funding for research that they have needed and deserved all along.

Here is the link to the NIH press release for the full story:

http://www.niaid.nih.gov/news/newsreleases/2010/Pages/CoFARexpands.aspx

I just had to share this news. I hope it puts a big a smile on your faces as it has on mine! :-)

First Experiment with Bob's Red Mill Gluten-Free Pizza Crust Mix

2010-07-10T16:19:00.007-04:00

I decided to try to make a pizza for the whole family last night. I used Bob's Red Mill Gluten-Free Pizza Crust Mix and substituted flaxseed meal and water for eggs, as directed on the package. The result was better than I had imagined! The crust was light and airy, not hard and "crusty". It was AWESOME, not to mention very healthy! I used olive oil, fresh minced garlic, Contadina Pizza Sauce (1 can), Hormel Turkey Pepperoni on one side and Trader Joe's Fire Roasted Red and Yellow Peppers along with a fresh sliced tomato on the other side. I topped it off with a little Daiya shredded mozzarella flavored "cheese" (you don't need much as the flavor is rather strong) and All Natural Frontier Pizza Seasoning. The picture above was taken before it was cooked, but the finished product is pictured below. Dad and I LOVED our half. The kids enjoyed all but the garlic (whose kids are these????)! So, mental note for next time: only put the fresh garlic on the adults' half! Otherwise, it was a big hit! Dad and I devoured our slices and while it was probably more satisfying than regular pizza, I could have easily eaten a third slice. :-) I have 2 other pizza sauces to try, and even though Contadina has corn syrup (not the healthiest thing), it may be the one we choose in the future just based upon flavor. I'll update here when I've tried the others.

I've included photos of the process (after actually working the dough into a pizza crust shape on the pan. However, in the last one (at the bottom),which was after it was fully cooked, I forgot to take the Daiya back out of the fridge for the picture showing all of the ingredients I used.

For anyone who wants to try this mix, I do recommend it. I may try to add a little tarragon in the future, to make it taste a little like the crust at Peace Pizza (they have delicious and unique pizzas). I could easily get creative, but I have to consider what the kids will eat. Happy pizza making!!!!

Helpful Cookbooks

2010-07-08T14:20:00.004-04:00

"The Allergen-Free Baker's Handbook, How to Bake without Gluten, Wheat, Dairy, Eggs, Soy, Peanuts, Tree nuts, and Sesame" by Cybele Pascal

This is my new favorite cookbook. I can now bake "NORMAL" foods for my son! Blueberry Boy Bait (blueberry coffeecake) is AMAZING! She has recipes for cakes, pies (including a allergen-free & gluten-free pie crust recipe), muffins, cookies, brownies, quick breads, and sandwich breads, pizza, and even cinnamon rolls! Have you previously found a safe recipe for graham crackers, focaccia bread, or matzo crackers? You'll find recipes for them in this book! Additionally, she provides recipes for 2 Basic Gluten-Free Flour Mixes - one for breads and one for everything else. She also has a wealth of information about "replacement" ingredients (alternatives to eggs, dairy, nuts/nut butters, and wheat), where you can find them online, and so on. As you can probably tell, I HIGHLY recommend this book!

"Allergy-free Cookbook (no eggs, no dairy, no nuts, no gluten)" by Alice Sherwood.
I purchased this book awhile ago but am looking forward to trying some of the recipes now that my son has passed many of the food trials needed to use several of the ingredients. While her recipes may list some allergens, she lists specific instructions for substituting ingredients to make the meals safe for those dealing with those particular allergies, and it's very well laid out and easy to follow. This book not only gives you recipes to use for breakfast, lunch and dinner (side dishes, appetizers, meat dishes, pastas & rice dishes, soups, sauces and dressings, etc) but it also discusses the ins and outs of living with food allergies, touching on some topics such as school, eating out, traveling, special occasions, and much more. This is another must-have for the allergy-free cookbook library.

"The Allergy Self-Help Cookbook" by Marjorie Hurt Jones, R.N. This book provides over 350 recipes that are "free of All common food allergens" (corn-free, egg-free, gluten-free, milk-free, sugar-free, soy-free, wheat-free, yeast-free). Yet another very helpful cookbook that runs the gamut from breakfast, lunch and dinner to appetizers, desserts, etc as well as specific information about alternative flours and other ingredients. She does have a section dedicated to goats milk and goats milk cheese recipes for those who are not allergic to goats milk. For those with EE or EGID, the proteins are too similar and it is not something that you can usually tolerate if allergic to milk. This book gets into a lot of detail about alternative ingredients, which I have found quite helpful. It also talks about food families and rotation diets, which may be helpful to some people. This is definitely another worthwhile book to have.

APFED also has a wonderful cookbook to help with the special dietary needs of those with Eosinophilic Esophagitis and Eosinophilic Gastrointestinal Disorders.
It’s called “Extreme Cooking for Exceptional Diets”, and it is available via the APFED website.
http://apfed.org/store.htm

Even a single food allergy/intolerance can have an emotional effect on a child

2010-07-07T16:05:00.008-04:00

Last night was rather an emotional rollercoaster here. My daughter was sobbing because she wants to eat like everyone else; she wants to eat what everyone else eats. She feels so left out at school; some kids go so far as to tease her with foods she can't eat and she doesn't think many people understand. I tried to explain to her that while it may seem unfair that she can't eat foods with dairy in them, I have worked hard to make sure she has yummy alternatives to just about everything that has dairy in it. I also explained that while she might not be aware of it, there are so many people with food allergies, worse than what she has, who are going through the same thing or worse every day. It is a matter of accepting that you can't eat something because it isn't healthy for you, realizing that there are so many other things that you can have, and not letting it get to you. I realize that is difficult for an 8 yr old, but I'm hoping she will embrace that way of thinking one day.

My daughter does not have Eosinophilic Esophagitis like my son does, but she does have a problem with dairy. It is not a true allergy, so she is not actually "allergic" to it, but for the sake of making things easy for others to understand, we occasionally call it an allergy. Usually, we just say it's a "problem with dairy" and simply explain that it makes her sick. It is not as simple as a lactose intolerance, as she reacts to the milk, cheese, casein, whey, with or without lactose. It causes severe stomach pain, leg pain, and occasionally vomiting. It also messes with her GI motility, to put it nicely. While it may not be a true allergy, it is an immune system response and we have seen signs of that in her scopes and biopsy results when we were investigating the cause of her GI problems (when she was younger).

When she was younger (just before she turned 2), she had C-Diff (clostridium difficile), a bacteria that took over due to antibiotics (for an infection) and anti-fungal use (for thrush). The C-Diff did damage to her intestines as it was not diagnosed quickly enough. She was hospitalized for 3 days due to severe dehydration from over 2 weeks of symptoms before she was finally diagnosed. After that was successfully treated, her body was reacting to everything she ate and she had to get a feeding tube (NG tube). The treatment for that was the same elemental formula that her brother is now on, which was prescribed to allow her gut to rest and heal. She had that for 6 months, which was 3 months longer than expected, but then she could eat again. However, she was still having problems with impacted stool, nausea, vomiting, stomach pain and leg pain which turned out to be from the dairy. It took several more months to figure that out.

She was also developing some symptoms or behaviors that are commonly seen with autism until I removed the dairy. I had recognized those things (hand flapping, palilalia, etc) and realized what they are usually associated with due to my experience with her brother. When we finally realized it was the dairy that was causing her severe gastrointestinal problems, not only did the GI symptoms disappear, but so did the autistic-type behaviors! That is when I started wondering what the link was, and found out (via her Drs) there have been studies linking malabsorption/malnutrition to Autism Spectrum Disorder (ASD) symptoms. That makes total sense and could explain why she started to display them (she was suffering from malabsorption as the dairy caused inflammation in her GI tract) and may possibly be why so many kids with eosinophilic disorders are on the spectrum (it isn't uncommon with celiac, etc as well). However, that's a topic for another time...

Unfortunately, people aren't always understanding or thoughtful of how a child might feel and they don't always consider her when choosing snacks, treats, etc. This really affects her at times, but she gets embarrassed if someone sees her cry, so she won't let them know how hurt she is. She waits until she gets home and tells me, then I tell others, who don't always believe me because she "seemed fine" or "didn't act upset". She has been left out of things, but so has her brother. My heart ached when he told me about an experience he had one day in 3rd grade. He was solely tube-fed then and wasn't able to eat anything, which everyone was well aware of. The class was given a survey of their favorite fruits. He filled it out, based upon what he used to eat, thinking it was just something they had to do. The next day, the teacher brought in the top choices with chocolate to dip them into. This was a class REWARD for good behavior or good grades or something! My son was not only left out, but he was forced to sit in the hallway outside of the classroom door all by himself, listening to the rest of the class enjoy themselves, which was more of a punishment to him. There was also nothing offered to him (non-food item) or anything. Not only was this NOT a reward for him, but it was pure emotional torture for an 8 yr old child. That is the same school that my daughter is now in.

I have worked really hard to make sure she has safe foods that are substantially similar to what everyone else has. I bake or buy safe foods when she is going somewhere and others will be eating something like cake, cookies, ice cream, pizza, etc. Whole Foods has an awesome vegan cupcake and often has a freshly made cheese-free tomato pizza in the refrigerated section (ready to be cooked in the oven) that I can buy in a pinch when I have enough warning. Rice Dream or soy ice cream is delicious! Silk soy milks are delicious. Daiya "cheese" is now available and that helps tremendously. There are some great options out there. However, there are times when I don't know that the class is going to have a treat and she'll feel left out just eating a cracker or a pretzel when they're having cookies because there is no attempt by the school to let the parents know there is a food allergy or sensitivity (or whatever it is) in the classroom. Our former Brownie troop consistently made her feel left out and didn't consider her needs or feelings, to the point she had decided to quit. Instead, we switched to a WONDERFUL new troop with an absolutely amazing leader. They are careful to make sure everyone is included and no one is left out. They make sure that snacks, etc are safe for EVERYONE! That's the way it should be everywhere! Unfortunately, it's at a different school, so she doesn't get to socialize with the local girls, which is one main reason why we got involved in Brownies to begin with.

So, it's summertime...why in the world would she have gotten so upset when she has not been at school, or any event where she might have been left out? Well, when I was away with my son at camp a couple of weeks ago, she and her dad visited her Baba (Croatian for "Grandmother") for a few days. Her Baba doesn't remember things like what the kids can and can't have. It wasn't on purpose - it was an honest mistake. There's no blame; it just is what it is. Dad was not keeping track of what Baba was feeding her for lunch one day, and my daughter ate a sandwich with cheese. She didn't have any GI problems after ingesting it, so now she thinks she has outgrown it. On occasion, she has had times when she has eaten something with dairy and for some reason, she doesn't have a problem, but that is rare. Whether it's because she has stayed away from it for so long and she can have that one bite without a problem, or whatever. However, other times she has had something and had an awful reaction where she has been up all night screaming and crying in pain, retching, etc.

This lack of a reaction has happened before on rare occasions and on two such occasions we let her have some more to prove to her that it will happen again, hoping that she will remember for the next time. I am not doing that again. I am not going to go that route again because, although it is my job to help her understand, it is also my job to keep her healthy. Exposing her to something that I know for a fact will make her sick when I know for a fact that she has not "outgrown" her reactions to it, just to try to prove something to her (again) is not the right thing to do in my opinion.

It didn't help that one of my family members told her during a holiday get-together that she should eat tiny amounts of dairy every day and she'll grow out of it. That was one of the worst possible things she could have told my daughter (who was only 7 1/2, by the way). Since she thought her aunt was a Dr (because she works in a hospital), she didn't believe me that she was mistaken. I then had to take her to an allergist, who explained to her that this is not the sort of "allergy" that she will outgrow. She will have to avoid dairy to stay healthy. I explained that Grandmom gets sick from dairy, which she is WELL aware of and has experienced the effects. Others in my family have a problem with dairy. I just happen to be the only mutant in the family who doesn't have the same problems or even allergies for that matter. Dairy is not an uncommon thing to be allergic to and it is not uncommon for it to cause tummy problems and other various problems. People don't usually think of it (and/or other foods like wheat) as the possible cause for chronic ear infections, asthma or sinus infections (especially in kids), so they don't know to try to eliminate it from their diets to see if that will help.

Foods can sometimes cause different delayed symptoms instead of the hives or anaphylaxis that most people think of with immediate allergic reactions. Whether they are "true allergies" or not, they are an immune-system response of some sort. The body gets confused and reacts inappropriately. This is something I have learned as a mom, but I never understood it as a kid and didn't fully appreciate all that my mother had gone though with her childhood allergies and related illnesses. My mother wasn't expected to live through her childhood.

Thankfully, the night ended on a good note after lots of crying and frustration. I'll continue to do my best to promote awareness at school for her food issues as well as food allergies in general, despite the general lack of understanding or cooperation on the part of her particular school. That will mean I'll volunteer to be a room mom again, continue to buy safe snacks for the entire class and continue to try to ensure that she has a safe alternative treat available at all times. She will do her best to try to accept the lack of dairy vs fighting it and mourning it. We'll see how that goes. I do have faith that she'll understand one day, but for now she's a little girl and it's to be expected that she'll be conflicted. I just wish it didn't have such a huge affect on her.

Disney With Special Dietary Needs and Asperger's

2010-07-05T19:08:00.010-04:00

I was just talking to someone about Disney World today and now I'm yearning to go. Not possible at this point, but now that my mind is on it, I might as well post about it. I was just talking about what a wonderful option it is if you can swing it for Halloween (Mickey's Not-So-Scary Halloween Party) in lieu of Trick-or-Treating, with all of that candy that they can't eat. You might want to consider taking a few safe candies/treats/non-food items with you to give to your child as they will have trick-or-treating stations in various areas around the park. Enjoy Life Boom Choco Boom chocolate bars are a favorite in our house.

I have already created a page dedicated to contact info for Disney and a book about traveling to Disney with various disabilities and special needs. The book is "PassPorter's Open Mouse for Walt Disney World and the Disney Cruise Line", by Deb Wills and Debra Martin Koma, and I found it VERY helpful. It provides a lot of details that will help with almost every, if not all disabilities and special needs.

The people at Disney were extremely helpful. They made it clear that part of their job was to do what they could to help me relax and enjoy the vacation I was paying for, instead of stressing over what, if anything, I was going to be able to feed my child. I e-mailed them immediately after booking the trip (this was 2 yrs ago). Shortly after they received my e-mail, detailing my son's dietary issues, I received not only an e-mail back with lots of great information about the specialty food products they have available to them, what foods might contain problem ingredients, etc, but I also rec'd calls from each of the chefs where I had made priority seating arrangements (as close to reservations as you can get there). When I made additional priority seating arrangements at other restaurants, I rec'd additional calls. They also went over what products they had available to them at their particular restaurant, and they were able to make sure they had the products at the particular restaurants ahead of time. When I arrived at the restaurant, I just needed to ask to s/w the chef and they came out to go over our needs (they already knew but just made sure they had it right).

The only downside was that you have to pay the adult price vs the child rate, but it was worth it to make sure that they have a safe meal, at every meal. I went with the meal plan and that worked out very well. There was even counter service in each location that had something, albeit not too many choices for our particular needs (too many foods to avoid). I was very happy that they had anything at all, though. They also had soy milk for my daughter just about everywhere. It wasn't chocolate Silk Soymilk, but a little Hershey's syrup did the trick. I can't recall if they had ricemilk or not, but I believe I brought the vanilla rice milk with me each day and they gave me some chocolate syrup to mix with it as needed.

As for the lines...there is a "Guest Assistance Pass" that is invaluable if you are eligible for it. You absolutely need a note from your Dr though, specifying the diagnosis and why you/your child can't wait in lines. Autism is one such diagnosis (includes Asperger's). If your child has to have enteral feedings frequently, they might accept that. They won't tell you in advance, though. You have to get the letter and show it to them the first day in the parks. The one guest assistance pass will be valid in every park for the length of your stay, and it is for the whole party, so it doesn't split you up. When we were there, it worked similarly to Fast Pass, but if it was not a Fast Pass enabled ride and the line was long, you could use the handicapped entrance. We didn't use that when the lines were short, though, as we didn't feel that was right to do. There are often similar passes in other amusement parks, although I have not found them to be the same or as good as the Guest Assistance Pass at Disney.

Speaking of Dr's notes, it is wise to have the Dr mention in the same letter that you/your child has food allergies and must bring safe food into the park. This is something you can take with you to various amusement parks, sporting events, etc. The book I mentioned above also talks about places to rent wheelchairs if there is a need (some of our kids have a hard time walking for any distance, experience pain &/or weakness, etc).

I really wish we could go back. I REALLY do. It makes a world of difference in my son, and I have heard that from many other parents, especially those with kids on the spectrum. It also really makes a huge difference in Mom (that would be ME)! It is one of my favorite places on earth and if I could afford to, I would be a member of the Disney Vacation Club, with either a week every year in Bay Lake Towers, Saratoga Springs or maybe even Wilderness Lodge. A room with a kitchen would be ideal. Ah, but I'm dreaming...where's my fairy godmother when I need her. ;-)

We've come a long way, baby!

2010-07-04T16:40:00.006-04:00

Below is a "video" that was done a few years ago for APFED. It is a montage of photos of kids with EE that is available on YouTube. My son is pictured in it a few times. See if you can spot him.

Yes, the toothless kid pulling his shirt up to show his belly is my son, as is the split screen of the skinny kid with the PEG tube (the first surgically-placed tube) and the boy sitting on an exam table with his Dr. The toothless picture was just after getting back from the hospital when he had his mic-key button (type of G-tube) placed. They removed his loose tooth for him while he was under so the tooth fairy visited the hospital and gave him a silver Liberty dollar (one of the newer ones, of course).

We've come a long way from then. He was only getting the enteral formula back then, but now, 5 years later, we have enough foods to allow him to eat 3 meals a day if he can handle it. They might not be exactly what everyone else is eating, but thanks to a lot of hard work and researching products, recipes, etc, they're pretty darned close at this point. Hopefully we can get to the point where he will have his tube removed. That is the goal, and it is a realistic one. My personal goal is to have it out by the time he gets into high school, which is only 2 yrs away. I think we can do it! :-)

Allergy-free cooking

2010-07-03T01:58:00.005-04:00

I have discovered a brand new cookbook! It's my new favorite! Cybele Pascal is the author of The Allergen-Free Baker's Handbook and The Whole Foods Allergy Cookbook. I just made the most amazing coffee cake for dessert last night: "Blueberry Boy Bait!" It was ab-fab! I substituted Bob's Red Mill brand Gluten-Free All-Purpose Flour for the flour mixture that is recommended in the book, and it was delicious, although I am sure the recommended mix would be just as good if not better. OMG it was GOOD! I can't wait to try the other recipes! The book has recipes for Red Velvet Cake as well as other cakes, breads (sandwich and dessert breads), cookies, brownies, tarts, and so on... Her son has food allergies, so she went on a mission to develop safe recipes and create a cookbook as no others were available to her when she started out on her journey with allergies.

Earlier in the day I had made a fresh loaf of bread for my son with Bob's Red Mill Gluten-Free "Homemade Wonderful Bread Mix" (yes, that's what it's called). It is also really delicious! He hasn't officially done a food trial of the new flours in these mixes, but I'm crossing my fingers that they'll be safe for him. Bob's mixes use garbanzo bean and fava flours, mixed with other ingredients that we already know are safe. We're on a food trial break right now and are trying to increase his intake of safe foods to minimize the enteral feedings. We'll be meeting with his team at CHOP this month to discuss our plan of action. I have a plan, but need to make sure they're in agreement with it.

Anyway, you can use the links provided in this blog entry to find the cookbook and flours I used. I HIGHLY recommend the cookbook if you are dealing with any food allergies or celiac. It's the best I've found, and I have already purchased many!

Boy Scout Camp

2010-07-02T22:32:00.008-04:00

Well, we survived a week at Camp Ockanickon in Pennsylvania. Aside from a few bumps in the road during the week, we had a great time. It was a bit odd being one of only a handful of moms at a Boy Scout Camp, but at least I wasn't the only one. It was hot, but not too hot. We were in the Wakoda site, which was at the far end of the camp. So, it was a bit of a hike for mom to use the bathrooms or showers, but that was fine. It was good exercise! :-)

I was very concerned going into it, as we had never been at summer camp before, let alone for an entire week. Of course, I over-packed! So what else is new? I know better for next time, but had no idea how things were going to work. It turned out that all we needed to do was cook in advance for the week, store it all in containers to be reheated each day in the microwave, and I was able to store it in a walk-in fridge/freezer in the mess hall. I had to get there a few minutes early to reheat and serve it, or I ran the risk of not have any food left when I finally got to sit down at the table, but it worked out really well. The amazing thing was that he ate 3 meals a day (his safe foods), almost every single day we were there! It was the first time since he was 6 yrs old, and even then it was a real issue to get him to eat (of course, we didn't know he had EE back then). I only cooked one meal on the Coleman Stove, and that was Cherrybrook Kitchen gluten-free chocolate chip pancakes, which he shared with his senior patrol leader (and me, of course). They were really YUMMY!!! He only had an evening enteral feeding (g-tube) just before bedtime and that's something we even skipped one night.

The camp nurse (Bridget) was terrific. She had a lot of experience that ran the gamut from pediatrics to geriatric (no, I'm not yet quite old enough to qualify), and she even had plenty of experience with autism spectrum disorders! She was no-nonsense and did not baby the boys. However, she also really knows how to give a pep talk and motivate someone to do something they don't really want to do (or are afraid of for whatever reason).

The boys slept in lean-tos and the old-fashioned canvas tents (on platforms). My son chose the tent, and slept by himself every night. I was very proud of him. He was intent on overcoming the fears, dealing with the bugs and wildlife that surrounded us. I, on the other hand, decided to sleep in my own cozy nylon tent. It just felt better to have that between me and the mice, raccoons, skunks (which visited our site), etc. The last time I was there was in November for a troop camping trip and it was pouring rain 95% of the weekend so I couldn't use my tent. I didn't want to float away in the middle of the night, you know. That was my one and only experience in a lean-to. After you sweep the mouse droppings off of the bunks, and put down a sleeping pad and sleeping bag, it isn't too bad, but I definitely prefer my own tent.

My son was in the Dan Beard program, which is for new scouts. While he had a very hard time with getting in the pool every day (probably anxiety), he was able to make up for it and complete his swimming merit badge requirements the last night there. He does much better with one-on-one instruction in all areas, but that isn't usually an option for most things. He earned the Swimming Badge, the Mammal Studies Badge and his Tote and Chip card, which (supposedly) indicates he has learned how to "properly" and "safely" use a knife, saw, and even an axe. They actually allow the boys to purchase knives (Swiss Army knives and lockback knives) in the camp's Trading Post once they earn that card! PARENTS BEWARE!!! You would likely have a very hard time seeing your kid use a knife without close supervision, which is exactly what happens there! Ugh! It was very difficult to balance being a normal mom with letting him do what all of the other boys were doing. Yes, he cut himself (just as he burned himself the first time he experienced a campfire), but fortunately it was nothing serious.

The biggest thrill for him was to shoot a rifle at the rifle range. I don't know why everyone is so shocked that I would have signed him up for this. I do hate guns in general, and do NOT want any in the house (although I have not been successful in persuading my husband to get rid of his father's guns and that really bothers me that we have them here). I have no problem with shooting in a controlled setting like a shooting range, though. I always enjoyed the shooting galleries as a kid, and used to be a good shot. Well, it looks like he inherited that trait. His first time, he hit the targets (all 15 shots). He passed the shooting portion of the badge test the first time out, so now he just needs to learn the rest of the info to get that badge. Oh, and the setting was absolutely GORGEOUS! It was a nice hike down a rocky hill to a stream in the woods. It was very picturesque. The archery range was also there, although we didn't get a chance to try that. We got there too late. That's something else I've always wanted to learn to do.

Again, it was a very nice experience. I am really looking forward to going again next year and so is my son. However, I'll know to pack a little lighter and I do hope that we get to stay a little closer to the bathrooms next time (the ones with the flushing toilets). I have nothing against the pit toilets, although it obviously isn't my first choice, but would prefer to have a little more privacy under the circumstances. :-) The cool breeze through the trees and the wildlife right behind our camp made up for anything and everything, though. You can see one of our visitors on the right. It was very serene and relaxing.

If you have a child with special needs, realize that the camp will not ensure that the child gets his meds on time or at all, nor will they cook the allergy-free foods for them or make sure they eat. That is something that the child is responsible for, which is why I went along. They are not liable! If you want to send them, I do recommend that mom or dad go along. It really is a good experience and there are some good potential bonding moments for you and your son. The mess hall food at this camp is really good (for non-allergic people), it is clean (a health inspector runs it and is very meticulous), there are lots of things to do, and it's a nice camp all around. Scouts drive hours to stay at this camp for a reason.

Illness, appointments and procedures...Oh My! (The reason I'm still a SAHM.)

2010-06-11T12:50:00.058-04:00

I've been a SAHM since my son was born, 12 yrs ago. I did think I'd go back by now, but that hasn't been possible. Too many illnesses, appts and procedures to hold a job; even a part-time job. I'd be let go within 2 wks. This week is the perfect example.

In this case, it seems like he just has a cold, although it's difficult to tell of it's that or if he is reacting to something he ate in the past few weeks. One of his food reactions is to get what seems like colds. We never know for sure until he's scoped, so we have to keep going with the food trial even if we suspect it (unless he's vomiting, etc). He is in-between food trials right now, so we let him eat some of the foods that he hasn't trialed yet, but only those that are not common trigger foods. He has, however, eaten a lot of strawberries, so if there is a food culprit, that is the most likely.

He's feeling lousy today. He was home yesterday and the day before, but thought he felt well enough for school today. That didn't turn out to be the case. I got the call at 10 am to let me know he needed to be picked up. At least I got a chance to run a couple of necessary errands first. I'm a room mom for my daughter's class as well, so I'm getting ready for the end-of-the-year party. In the northeast, school lets out in June, unlike the rest of the country. We had several snow days this year, so the kids have to make up 3 of them at the end of the year. School won't let out here until 6/22.

I can't even begin to count the # of days he has missed this year. It's a bit overwhelming. I guess I'll find out when I get his final report card. He has not only missed whole days, but he this year he started to get some new symptoms, which were very confusing and took awhile to figure out. He missed a whole heck of a lot of class time as a result, and it was very common for me to get calls from the nurse to come pick him up. He had transient dizziness for 2 yrs, but he could always keep his balance, so no one knew what was going on. We had lots of tests and they were all normal. So, one day I decided to have him see a neurologist; the one my daughter went to see when she had a bout of ataxia at age 3. She was hospitalized for 3 days at that time, all tests came back fine, and the neurologist told me it was an early sign of migraines. She'll develop them when she gets older. So, I thought it might be a good idea to pursue that possibility. Sure enough, it was a very likely cause. Unfortunately, it had taken close to 2 yrs to figure that out.

Well, that migraine diagnosis (migraine variant) was confirmed this past October when he started to get all of the other symptoms of migraine.....all but the headaches, that is. Talk about confusing! The teachers thought he was making it up or at least milking it or making it seem worse than it was. Nope! He was having severe migraine symptoms, but they were all subjective (not verifiable). Thankfully, I sat in on a meeting where they were telling him of the dangers of being "the boy who cried wolf". I asked them to allow him to go to the nurse to be checked so that she could verify there was nothing wrong. They didn't want to, but agreed. Thankfully, because it was there that we noticed something called "nystagmus". His eyes were darting side to side very rapidly. That was not something he could do voluntarily! Sure enough, that was something that occurs with migraines, as I found out later that day at his Dr's appt. His pediatrician confirmed the migraines and wrote a note to school to let them know, then we had to make another appt with the neurologist. I do not blame the teachers, as it was easy to make the mistake that he was making it up. The thing was that he never had before. I realize that could happen at any time, considering his age, but he has always been very honest about what he was feeling, if he could even explain what he was feeling, that is. That's another problem altogether, and is a part of the Asperger's.

...more to come...need to get him to a Dr's appt now....
Ok, it's just a virus as I suspected. It's going around. All is well, but illnesses and other medical issues are just the norm here; more so with my son than my daughter, but she has had her share of medical issues as well. If it isn't one, it's the other. Again, this is why I'm home.

Last year, I actually had the audacity to think I might be able to take an online medical billing and coding course to try to do something part-time or even at home. The majority of my work experience is in personal lines claims so while it's different, it would still be similar. I signed up for it and paid for it but, like I said, I had the AUDACITY to think I could actually take the course. HA! Of course, things happened all at once and my job as mom & caregiver took precedence due to lots of medical issues & school issues (both overlapping), let alone my father (who has Parkinson's) falling and breaking his arm in 2 places thus needing to be placed in an acute care facility. My mom needed help focusing on what to do and dealing with her anxiety over the whole thing. It was soon decided that he needed permanent placement. So, that was something else. There's always something, and that's fine. That's just a part of life. There are always challenges to meet head-on and overcome. Everyone has something going on in their lives, and many have much more to deal with than we do. We've also met and overcome much greater challenges, and we will continue to do so. Again, that's a part of life.

So, since I still can't go back to work and the kids will be out of school in 2 weeks, I decided to try out blogging. I'm a novice and I'm a bit long-winded, but I'll try to learn to condense what I want to say.

I've been involved in online and local support groups for years, but have backed off a bit in the past year for various reasons, including the above. I had been more involved in an online support group until last year. I'm still involved in support somewhat, but not nearly to the same extent. The local group needs my attention (we haven't met in a year). I hope to get that rolling again soon. Sometimes you just can't do it all. We might try, and sometimes we may even succeed, but we all have limitations. :-)

Again, thanks for reading.

First Post

2010-06-10T13:18:00.022-04:00

My son has Eosinophilic Esophagitis, which is also abbreviated "EE" or "EoE". It is considered a "rare disorder", but as more people are being diagnosed, it is becoming evident that it isn't quite as rare as once thought. It is a immune-driven disorder. The body's immune system is confused and mistakes foods for an invader. It sends a particular white blood cell, called an eosinophil, to fight the invader. Since there isn't anything to fight, the eosinophil breaks open and spills it's contents (it "degranulates"). Those contents include a neuro-toxin that is meant to kill parasites, etc, and that is what damages the lining of the esophagus. The damage is not immediate like most food allergies, but delayed, making it a bit confusing and more difficult to figure out what caused the reaction, or to realize it is even a food reaction at all.

Since it isn't an immediate reaction, the normal allergy tests (SPT and RAST) are not always going to be helpful. Skin Prick Testing can be helpful for some, but not the majority. Even with regular allergies, there is a 40% chance of false positive results with Skin Prick Testing as it is. RAST has proven not to be helpful and is not used by the Drs who commonly treat EE. PATCH testing is used and is also helpful for some, but not everyone, and there can be false positive as well as false negative results.

The damage is internal, so it can only be diagnosed via endoscopy with multiple biopsies of each area of the esophagus, because it presents in patches. If you only get one biopsy of each area, it may be missed. You also can't just diagnose by the way the esophagus looks as sometimes it may look fine but the biopsies show otherwise or conversely, it may look like EE but might be something else. Biopsies are the only way to tell. Hopefully, one day there will be less invasive testing that will be equally as accurate, but that is the only option for now.

My son was diagnosed 6 yrs ago, when he was 6 yrs old, but he has had it since birth and displayed symptoms immediately. While many people only react to a few foods and are able to pinpoint those foods via an elimination diet, that did not work for us, despite eliminating 14 different foods. So, in his case, he needed to remove ALL food!

Since we are not fans of steroids, especially long-term (which was the only other option and would be a life-long treatment) and we wanted to make sure we knew what he can eat and what he needs to avoid so we can build a safe diet for him - one that he can follow when he is an adult as well so he can stay healthy. Thankfully, his doctors at Children's Hospital of Philadelphia (CHOP) do not encourage steroids either as the first line of treatment. However, they treat each child on an individual basis, realizing that what is appropriate for one child (and their family) is not necessarily appropriate for another. My son was prescribed an elemental formula. It is amino-acid-based with no intact food proteins for the body to react to. It allows the body to get the nutrients it needs without reacting, thus allowing it to heal. The most common ones used in the US are E028 Splash (which we use), Neocate and Elecare. Since the formula tastes quite foul, despite flavoring, he was not able to drink much of it and it quickly became evident that he needed a feeding tube.

He started out with an NG tube in January, 2005. NG = naso-gastric, which goes through the nose, down the throat, and into the stomach (his sister already had one for a different GI problem, which was fortunately only short-term). However, he has many sensory issues (sensory integration dysfunction) and the feeling of the formula going through the tube triggered his gag reflex. However, the elimination of all foods and the addition of the elemental formula allowed him to heal and become healthy for the first time in his life. So, since we knew it was going to be a long-term solution, he had surgery to place a G-tube (Gastric feeding tube) in July, 2005. It wasn't an easy decision but we knew it was necessary and would be the right thing for him. He thrived! He gained weight and grew exponentially at first, as his body caught up to where it should have been had it been able to absorb the nutrients it needed all of those years. 5 years later, he still has the G-tube, so it was, indeed, the right decision.

In those 5 yrs, we have been doing food trials. While he has failed several, he has also passed many over the past 2 yrs, and his options are much greater now that there are more allergy-friendly foods on the market. My goal, which I think is a realistic one, is that he will have enough safe foods to remove the G-tube before high school.

I wanted to give a brief synopsis of our situation. I will also later discuss how it has affected his younger sister, as well as the less severe food issues we have experienced with her (she does not have EE). Furthermore, since my son also has a diagnosis of Asperger's Syndrome, and there seems to be a very large # of kids with eosinophilic disorders who are on the spectrum, I'll include our experiences in that regard, as well as resources I found helpful.

I started this blog to try to share some of our experiences, from pre-diagnosis through now, in hopes that it may help others who are dealing with the same disorder. While many with Eosinophilic Esophagitis will not have the severity of symptoms or react to as many foods, I hope to share our experience in a way that will help others regardless of age, severity, type of treatment, etc. I also plan to share some helpful tips, websites, products, cookbooks, recipes, etc.

I also want to point out that I am not a physician and I do not offer medical advice. Nothing I say is to be used or construed as medical advice. You should address any questions or concerns about your specific needs to your licensed healthcare professionals (physicians) and never delay seeking medical treatment from your licensed healthcare provider as a result of anything you read on this blog.

If you want to learn more about Eosinophilic Esophagitis or Eosinophilic Gastrointestinal Disease in general, please visit the American Partnership for Eosinophilic Disorders (APFED) at http://apfed.org/

I also have a specific "About Eosinophilic Esophagitis" page on this blog. See the menu above on the left.

Thanks for reading! :-)

Eos Mom - Life With Eosinophilic Esophagitis

Holidays with Food Allergies and Eosinophilic Esophagitis

True Life | I'm Allergic To Everything

Eosinophilic Esophagitis: Finally seeing the light at the end of the tunnel

Special Education Laws and Resources: IEPs, 504 Plans, Classroom Accommodations for ADHD Children | Information on Attention Deficit Symptoms, Treatment, Diagnosis, Parenting, and More - ADDitude

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.

New name for the NJ/PA Eosinophilic Website

Eosinophilic esophagitis: Updated consensus recommendations for children and adults

Egg Allergy? How to substitute egg in recipes

Study reveals long-term outcomes for children with eosinophilic esophagitis (EoE)

How to Get Tax Deductions for Food | eHow.com

Instructions

Tips & Warnings

Sweet Freedom Bakery: It's Gluten-Free and Allergy-Friendly!

Dealing With Food-Filled Holidays When You Can't Eat Like Everyone Else

New Food Trial Under Way: Beans, Buckwheat and Berries, Oh My!

Oh, the Joys of Health Insurance Changes and Our Economy!

A couple of new informational EoE brochures added

Kids With Food Allergies Annual Family Fun Expo coming to North Wales, PA

REGID - Registry for Eosinophilic Gastrointestinal Disorders

What An Amazing Week for Eosinophilic Disorders and Food Allergies in General!

http://www.niaid.nih.gov/news/newsreleases/2010/Pages/CoFARexpands.aspx

First Experiment with Bob's Red Mill Gluten-Free Pizza Crust Mix

Helpful Cookbooks

Even a single food allergy/intolerance can have an emotional effect on a child

Disney With Special Dietary Needs and Asperger's

We've come a long way, baby!

Allergy-free cooking

Boy Scout Camp

Illness, appointments and procedures...Oh My! (The reason I'm still a SAHM.)

First Post