The elevator to success is out of order. You'll have to use the stairs...one step at a time. ~Joe Girard

Spreading Awareness

My purpose in writing this blog is to spread awareness and provide support to parents of children with and without special needs. I have one child with a Learning Disability, more specifically, a Visual Processing Disorder including Dysgraphia and another child with a disease called Eosinophilic Esophagitis, an allergic white blood cell disease that attacks the esophagus.

Showing posts with label furrowing. Show all posts
Showing posts with label furrowing. Show all posts

Thursday, June 10, 2010

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.

Saturday, March 6, 2010

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.