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.  

Eosinophilic Esophagitis is in Remission (FINALLY) on Elemental Diet and Flovent - Now Bring on Food Trials!

Finally...Andrew is in remission!  The scope he had on Thursday September, 29 confirmed it.   The elemental diet of EO28 Splash plus swallowed flovent has done the trick.  It's taken a while to figure out the right combinitation, but thankfully we have. 

Andrew had been anticipating this scope for quite a while.  He knew that if it was clear he would be able to begin food trials.  As we waited for his procedure to begin he chatted with the nurse about normal 8 year old boy stuff, as at ease as if he was talking to a friend's mom.  It still amazes me how unconcerned and comfortable he is while he is at the hospital.  I, on the other hand, feel sick to my stomach each time he has a scheduled procedure.  Then the conversation turned to food and what food he wants to be able to eat if he has a clear scope - a reminder of the reason we were there, although to Andrew it was still a matter of fact conversation.  Although I am glad that he does not get nervous or upset about going to the hospital, there is still something unsettling about knowing that your child has had so many procedures that he is actually comfortable, at ease, and the staff knows him by name.

After the prep time was over and I signed all the papers, basically signing my baby's life away, he was rolled back to the OR where we met the anesthesiologist, the GI and the rest of the team.  They answered any questions Andrew, my husband or I had and then they put the mask on his face and he started to fall asleep.  I absolutely hate that feeling-watching my baby go under.  I gave him one last kiss, told him I love him, and my husband and I went to the waiting room until Andrew was brought into recovery.

About  half an hour later a receptionist came for us and brought us to recovery.  Andrew was still partially asleep, in that drugged state.  Dr. Caicedo walked in shortly after.  I could tell by the look on his face that he had good news for us.  It was the best looking scope to date.  He said there were no visible white spots.  The only other time that has happened was when Andrew was in remission on systemic steroids.  After he said that, there was this little drugged voice from the bed, "Does that mean I get to have food?!"  My heart almost broke.  Even though he was still drugged, he knew enough to understand what was being said.  Dr. Caicedo was optimistic, as were we, but we had to wait for the biopsy results.

Fast forward 5 days:  A nurse calls to let us know that Andrew is definitely in remission, which meant that Andrew could begin his first food trial.  I needed to speak with the doctor about the particular food that Andrew wanted to eat (bison) before allowing him begin, which took another 2 days.  After waiting so long to eat, I was not going to do anything to jeopardize it by not speaking with the doctor before we began.  So a week after the scope we got the green light from the doctor.  On Friday we purchased some ground bison and on Saturday, 282 days since the last time he had food, Andrew was able to eat a bison burger.

What a wonderful lunch we had.  We were all able to sit down and actually eat food as a family for the first time in over 9 months.  Watching Andrew eat his bison burger brought so much joy to our family.  He ate it so slowly, savoring each bite.  He enjoyed his meal thoroughly.  Madison was so happy for him.  She grabbed her camera before lunch started and continued to take pictures of him throughout lunch. 

When Andrew started his elemental diet he was told it would be for 6 weeks.  It has been 282 days.  Can you imagine not being able to chew food for 9 months? How would you feel knowing your family is eating meals and you can't each day for 282 days?   Watching your friends at school eat lunch, celebrate birthdays with cupcakes, use candy for lessons for 38 weeks and not participating?  The list goes on and on.  But my Andrew did this with maturity, grace, and so little complaints.  I know the challenges have just begun, introducing foods can bring on issues of their own, but I am so grateful that God has given Andrew the strength to deal with curve balls that are thrown his way.  I know that as a family we will be able to handle the challenges of food trials if we follow Andrew's lead.

The next step?  Andrew will continue eating bison for 2 weeks.  If he has no symptoms, he will reintroduce a food every 2 weeks.  If symptoms occur we will stop that food and he will be scoped.  If no symptoms occur, then he will be scoped after every 5 foods , or every 10 weeks.  There is a systematic way to introduce foods based on a scale of the least allergenic foods.  It usually starts with vegetables, fruits, and moves on from there.  We are deviating some from the protocol by allowing Andrew to start with bison, however, it is on the bottom of allergenic scale for meats.  Now it is just wait and see....Wish us luck!

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!

Back to School

Wow, it's hard to believe that the children will be going back to school tomorrow.  The summer has flown by as it always does, leaving me feeling rushed as the last day of vacation has arrived.  Although we always look forward to the "lazy" days of summer vacation, somehow, they are always filled with appointments and activities that somehow leave us little time for that "laziness" that I crave in June.

This week has been filled with last minute shopping, Back-to-School Night to meet the teachers and my personal meetings with my children's teachers to discuss their various special needs.  Of course Madison loves the shopping part, whereas Andrew would rather be home doing anything else.  They both enjoyed meeting their teachers, discovering the other students who will be in their class and exploring their new classrooms.  And then there are the first teacher conferences that I set up before school starts each year.

Because both of my children have special needs, I feel it is important to schedule a meeting with their new teachers before they ever step foot into their new classroom.  For Madison, this gives me an opportunity to go review her IEP with her new teacher so that she will be familiar with the accommodations that Madison is supposed to receive during the year.  This year when I contacted Madison's teacher, I asked to meet with her, stating that I knew she would be changing classes for subjects.  Her email reply asked if I would like to meet with the entire 5th grade team, as Madison would probably be working with each of them at one time or another.  That immediately gave me positive feelings about the year.  The meeting went well.  The entire team listened to me discuss Madison's background, her strengths and weaknesses.  They also asked questions and gave suggestions as to how they could make modifications in the classroom to better accommodate her.  It was a truly productive and positive meeting.  I am a true believer that when the student, teachers and parents work together, the education process works at its best.

Andrew's meeting was less involved, but yet just as important.  I needed to explain to his teacher what eosinophilic esophagitis is and what impact it has on Andrew.  She needs to be aware that he is on an elemental diet and will need to drink his "juice boxes" at various times during the day.  Andrew also asks that I go into his class the first day of school and help him explain to the class why he can only drink.  So I needed to set up a time with the teacher for me to do this.  The meeting went well and I will meet with the class tomorrow. 

Here's to a great year!  First conference....done!

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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Individualized Education Program (IEP) and Tips for Parents

With August quickly approaching, so is the beginning of school...at least for those of us that live in the south.  The start of school also means IEP meetings for many of us with children with special needs.  Below I have given an overview on Individualized Education Programs (IEP), as well as listing resources to help parents prepare for an IEP meeting, whether it be your first or your fifteenth.  Hope you find this post useful.

An Individualized Education Program is mandated by the Individuals with Disabilities Acts (IDEA).  The IDEA requires the public schools to develop an IEP for every child that has met the requirements to be considered in need of special education or related services.

In order for an IEP to be successful, parents, teachers, other school staff, and even sometimes the student must work together to identify the student's needs and the best way to address them.  So if your child has been identified with a learning disability and is eligible for services, the next step is to set up an IEP meeting.

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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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