Food Trials

This has proven to be a complicated process, just as I know it is for most families with EE.  Andrew failed his trial with bison based on symptoms.  He was having stomach pain, chest pain and increased regurgitation.  The GI took him off the bison and had him back on elemental only for about a week before he was able to trial his next food.  He noticed a difference in the way he felt almost immediately.  We knew we were taking a chance with bison.  On the food introduction list that we are following, most meats are in the "C" list category, where as "A" and "B" list foods are less allergenic.  However, months ago, Andrew had been told he could eat a meat first, so the doctors wanted to grant him his wish, and he started with one of the least allergenic meats.

After he failed bison, he chose to start over again with sweet potato, a vegetable on the "A" list.  He has truly enjoyed eating sweet potatoes, a food that he did not like before the elemental diet.  It's amazing what 9 months on EOSplash will do for the taste buds.  I mash them with a little of the water I boil them with and slice them very thin and bake them in the oven.  He has also had a baked sweet potato.  He never complains and will eat them any way they are fixed, but prefers the "french fries" best.

Believe it or not, we had 2 weeks symptom free so we began peaches.  I'm not completely sure how they are going.  He says that he is fine, but I know that his stomach bothers at times.   It is hard to say if it is an "EE" hurt or just from the constant constipation.  We just keep trucking along and hoping for the best. 

Our doctor recommends scoping after 5 foods,  which would be 10 weeks.  We are hoping to get a scope done over Christmas Vacation.  I never like to get my hopes up.  There have been so many times he has been symptom free, but has had 75 or more eos per hpf....even on the elemental only diet.  But wouldn't it be a wonderful Christmas present if he was able to eat 5 foods safely and scoped clear for Christmas!!

***I feel as though I need to apologize for not posting in such a long time.  I accepted a 2 week substitute position at my children's school (that was 6 weeks ago), and there is no end in sight.  Between that and my children I have been extremely busy and seem to have neglected my blog.  Although I never had any intentions of accepting long term substitute positions, I am completely enjoying teaching again....it has reminded me why I went into the profession so many years ago.  

Triennial Meeting - IEP vs 504 Plan

Thursday we had Madison's Triennial meeting along with her IEP meeting.  As much as I know the goal is for the child to place out of special education and no longer need services, at first, I was hoping that my daughter would still qualify.  I wanted her to have the option to receive pull out services if she needed them, as well as maintain her current modifications.  However, as I began to think about it, I realized that it would be okay if she didn't qualify, because she could still receive a 504 plan for the remainder of her school career....even through college.   Many parents do not realize that if their child tests out of receiving special services that they are still eligible for a 504 plan, allowing them to continue to receive their accommodations.  As stated in the article "A Parent's Guide to Section 504 in Public Schools" 

Section 504 states that: “No otherwise qualified individual with a disability in the United States, as defined in section 706(8) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance...”  

Because a person with a disability is anyone who:  " (i) has a mental or physical impairment that substantially limits one or more major life activity; (ii) has a record of such an impairment; or (iii) is regarded as having such an impairment” a child that "tests out" of services, but would still benefit from accommodations can and should receive a 504 if they no longer qualify for an IEP.  As well as including specific learning disabilities, a child may also receive a 504 for medical conditions such as diabetes, epilepsy, allergies and for my EOS followers, it would include eosinophilic esophagitis as well.  If one of these issues are impeding your child's ability to perform in school, they should qualify for a 504.  The purpose of this plan is to level the playing field for our children.  What sense does it make to phase a child out of their IEP and give them no support afterward?  It is in your child's best interest to know which accommodations will benefit them while they work toward a complete phase out.

As for Madison, it didn't end up making a difference.  After struggling with the decision to have her privately tested again or letting the school do it, and then thinking about what to do if she didn't qualify, she did...in reading, writing and math.  However, her resource teacher was shocked about the math, saying that she knows Madison knows how to do the problems.  It was visually confusing, but she also could have just had an off day.  Her IEP team is wonderful including the resource teacher, a new school psychologist (who wrote up the most comprehensive eval I have seen from a school psychologist), the classroom teacher and principal.   We reviewed her test results and rewrote her IEP making it more effective for her needs now.  It was a very productive meeting. 

So, I know I said in the beginning that I wanted her to still qualify, and I did/do, so that she can receive the services that she needs, but as a parent, there is still that feeling you get in your stomach and heart when you hear the news.  I want what is best for my child, and I will never stop fighting to attain that, but truth be told, there are so many times I just wish that she didn't have a learning disability and could complete all her work as easily and quickly as most of her peers.  However, I am so blessed that she is my daughter.  She is such a hard worker, so smart, kind, loving and beautiful.  I'm so proud of her!

Elemental (Amino Acid-Based) Formula Coverage

For some children with Eosinophilic Disorders, an amino acid-based elemental formula is a large part, if not the only form of nutrition that enters their body each day.  Due to allergies and reactions to so many foods, they are unable to consume a regular diet of everyday foods.  These formulas are life-sustaining to these children.  Without them they are sick each day, some to the point of vomiting constantly or having recurrent diarrhea. 

With this in mind, one would think that the insurance world would see it as a necessary medical need, therefor providing coverage for this extremely expensive and unpalatable medical food.  In most states, this is not the case.  There are only 14 states that provide coverage for elemental formulas at this time, and some of those with minimal coverage at best.  Here is that list with links to their coverage:

• Arizona
• Connecticut
• Illinois
• Maine
• Maryland
• Massachusetts
• Minnesota
• New Hampshire
• New Jersey
• New York
• Oregon
• Rhode Island
• Texas
• South Dakota

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Thanks To the National Institutes of Health (CoFAR) and Voters for EGIDs at Chase Community Giving

During National Eosinophil Awareness Week it was stated that the National Intstitutes of Health (NIH) gave $0 a year in funding toward Eosinophil research.  I am happy to say, that is no longer the case.  In a press  release on Wednesday, July 14, NIH Expands Food Allergy Research Program Consortium of Food Allergy Research Renewed With a Five-Year, $29.9 Million Grant, NIH announced the Consortium of Food Allergy Research (CoFAR) will be funded for 5 more years.  CoFAR has been working on ways to treat and prevent food allergies since 2005.  It will now broaden it's scope to include genetic causes of food allergy and studies of food allergy associated with EGIDs, mostly EE (EoE).

While food allergies are associated with the production of immunoglobulin E (IgE) antibodies as a response to a food which may lead to symptoms anywhere from hives to anaphylaxis, EGIDs can also be associated with IgE, but are also associated with stomach pain, vomiting, chest pain, and trouble swallowing.  There is also inflammation, irritation and a large number of eosinophils in the esophagus.

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DisneyWorld with EE

Spring break was going to be a celebration of the end of Andrew's elemental only diet.  He was supposed to have a food added back to his diet by now and we were going to "celebrate" his success of staying on the an all liquid diet for 8 weeks (which has now been more than 3 months) by going to Disney.

Well, as you know, he didn't pass his scope, so he didn't get to add a food...but we still decided to keep our reservations and go to Disney anyway.  We discussed this decision with Andrew because we would be eating at least 1 meal a day in a restaurant, and he would have to go with us and sit at the table and drink his Splash juice box.  This is something we have not done with him since he has been on this elemental diet.  He assured us that it was okay, that he just really wanted to ride the rides anyway--"isn't that what Disney is really about?"

So off we went.  Well of course things can never be easy.  Andrew ended up sick our first day there.  I knew he either had a sinus or ear infection.  I tried calling our pediatrician, but our primary pediatrician was out for the week and the one that was available would not listen and told me we had to be seen in Disney.  Because Andrew is getting ready to start the high dose of steroids and has chronic sinus issues, I felt confident his primary would have called in a prescription, but the doctor in the office would hear nothing of it.  So then I had to find out the dose of the antibiotic pill that Andrew takes because he can not take the liquid or chewable because he becomes symptomatic while on them.  After that we had to find an Urgent Care in Disney.  Believe it or not, Disney does not employ their own physicians.  So to make a long story shorter, we spent 2 hours the next morning (the waiting time alone that evening was 3-4 hours) at Urgent Care for the doctor to tell me that my son had an ear infection, and then for me to tell him the exact medicine and dosage my son needed due to his EE.  But, since we happened to be there, I had them give him a shot of Rocefin to speed up the process so our whole trip wouldn't be miserable.  I do have to say it was interesting because while we were waiting for the shot, the doctor came back in to ask me questions about EE.  He said he had never had a patient with the disease before and wanted to learn more.  Anyway, it would have to be the child with EE to get sick!  He has not been sick once this winter since he began the elemental diet, and boom, go to Disney and right off the bat!

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Elimination Diets for Kids with Eosinophilic Esophagitis

Our world revolves around food.  Most events-- family and friend gatherings, holiday get togethers, birthday parties, class parties at school, after game celebrations, special treats for positive reinforcement, and just having a nice meal, all include food.  Food is something we all have in common.  We use food as a way a to socialize with family, friends, even co-workers and acquaintances.

What do you think you would do if one day you were told you could no longer eat your favorite foods.  Let's say you really enjoy that bowl of Corn Flakes with a nice cold glass of milk each morning.  Or you look forward to that steaming cup of coffee with cream.  Perhaps you really enjoy eating yogurt and a bowl of fruit, say strawberries or grapes for lunch.  And how about that grilled chicken or salmon for dinner with a nice roll.  And if you feel like it during the day and don't want to snack, you might grab a piece of chewing gum or suck on a mint.  Now imagine that you can't eat any of these items among many, many more.  How do you think you would react?

So many children with EE are on either elimination or elemental diets.  This can be such a scary, frustrating and overwhelming time for these children and their families.  When we found out what foods Andrew was first going to be taken off, (wheat, chicken, milk, fish, and treenuts) I remember feeling devastated, overwhelmed and so sad for my son.  However, at the same time, I was hopeful that this diet was going to put us on the path to remission.  But my feelings were not the feelings that were most important...there was this 6 year old boy that was being told he was not going to be able to eat his favorite foods anymore.  No more milk, ice cream, cheese, bread, and so many more things that you would never imagine that have these ingredients hidden in them.  Going to restaurants would have to be limited, birthday cake at friends parties was a no-no, he would have to bring his own snack to his basketball games, and on and on and on.  So I asked Andrew how he felt about having to go on this new diet and his reply amazed me. "I'm a little bit sad and a little bit happy.  I'm little sad because I wont be able to eat some of the food I like, but I'm a little happy because I will get to try new foods."  He about brought me to tears.  What  a mature response for a little guy, and how blessed we are to have such a wonderful son.  So then it was my job to do research, buy cookbooks and learn how to change his diet and make his food, as well as our entire family's dinners "Andrew safe".

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