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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Andrew Update: Biopsy and Ph Probe Results

We received Andrew's results from his endoscopy/biopsy and ph probe  a couple of weeks ago, but  things have been crazy so I haven't had a chance to post the results.  Let me start by giving a brief review of his treatment history to this point.  When he was diagnosed at age 3 he was put on a high dose of systemic steroids which did not help.  Over the next few years he was on and off swallowed steroids with no success as well.  At that time we changed GI's and he had him patch tested.  He started an elimination diet of 5 foods and his Eos count went up.  He was then patch tested again at a different clinic, was taken off 13 foods, and again his Eos count went up.  At that point we put him on an elemental only diet (Neocate Splash) for 8 weeks.  When he was scoped after those 8 weeks there were so many eos phf they couldn't count them.  So then we decided to try a round of high dose steroids while he was also on the elemental diet.  So now for the results....

The endoscopy showed that there is still furrowing and irritation, but no visible "white patches".  The biopsy results showed that he is in histologic remission (5 eos/phf, the first time he has ever been in remission).  The Ph probe showed that he has excessive reflux which is all acidic, apparently the cause of irritation in the esophagus.  So what about the treatment?  Our doctor explained to us the importance of getting Andrew's reflux under control first.  So he will be going from 20 mg of prilosec 1x/day to 40mg 2x/day.  Pretty big jump.  Next we need to taper him off the high dose steroids.  This process takes 4 weeks.  After he is weaned off the steroids, we will see if he can maintain remission off the steroids, but still on the elemental only diet for at least 3 weeks.  The doctor that our GI is consulting with suggests that we have Andrew scoped again after this period to see if he has maintained remission.  Our GI feels that we could go on symptoms, and if he doesn't have any symptoms after the 3 weeks, we could then begin to trial a food.  So that is the treatment plan.

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In the Hospital: National Eosinophil Awareness Week - Days 5 and 6

Well, it seems fitting that we have celebrated days 5 and the beginning of day 6 of National Eos Awareness Week in the hospital.  It is a scheduled visit.  Yesterday, Andrew had his 8th endoscopy, as well as his first ph probe, which is still in as I type this entry.  Six of those 8 endoscopies have been done in the last year and a half.  That means six trips to the hospital, six days of missed school, six days of anxiety (at least for Mommy, if not for Andrew), six times under anesthesia, six scopes being put down my baby's esophagus...none of this without risk, but all of this to find answers, put my child into remission and help him live a healthy more normal life. 

As I sit here and watch him play the hospital video games with  the probe in his nose, he seems so content.  I know, that seems odd, doesn't it?  I am so lucky, because my son is really such a trooper.  I truly hate this disease, but when I look at Andrew, I am reminded that I have so much to be thankful for.  He is such a brave, strong kid.  He rarely complains, even though he has not had a single bite of food since January 2 of this year.  He drinks eight of his Neocate Splash juice boxes each day and never complains.  Even while on those, he regurgitates after drinking them more than I realized.  With this probe, he has to push a button each time "junk comes up his throat" (when he regurgitates), which has been at least 30 times a day...I've lost count.  But still, he never complains.  He wakes up from a scope and is happy.  He had to stay in a hospital bed all day with a computer attached to him because of the probe, but he didn't complain.  His IV hurt, he told me, I told him it had to be there and would feel better when he was sleeping and he went to sleep.  Some children may not be so calm and cooperative. 

So if we have to fight this disease, I'm glad I have Andrew to show me how to be brave and patient.  He is an amazing child that has to deal with more than a child (or an adult for that matter) should, but he does so with such grace and courage.  I learn so much from him.  Andrew, you and Madison are my heroes, and I love you dearly!

Biospy Results After Elemental Diet for Eosinophilic Esophagitis

Thursday morning we woke up and took Andrew to the hospital for an endoscopy and biopsy after 8 weeks of an elemental diet.  My husband, Andrew and I all felt fairly confident going into this procedure, as 90-95% of children that are treated with the elemental diet go into remission.  Between those statistics, the fact that his symptoms had nearly diminished and he finally began to gain weight (5 pounds in 2 months) we were cautiously optimistic that his scope would be clear.

Before I go on, let me explain an elemental diet and why it is used for children with EE.  An elemental diet removes all sources of whole or partial proteins.  This is done by having the child (or adult) either drink, as in Andrew's case, or ingest by feeding tube an amino acid-based formula, such as Neocate or Elecare.  An elemental diet may be considered after a complete elimination diet of positive foods and medications have failed.  The goal of the elemental diet is remission, having symptoms resolve and eosinophils clear (at least below 10).  At that point, the child would begin food trials, systematically adding back one food/ingredient at a time to determine which foods are causing a reaction.

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