PWS Awareness Month- Day 5

Hi Everyone,

First, we want to say happy birthday to my mom!  We love you!

Today we will be talking about GI and Allergy.

GI: We see Dr. Scheimann every 6 months at Texas Children’s Hospital in Houston.  We see her mainly for Kemett’s eosinophilic esophagitis.  So far Kemett has not had any GI issues associated with PWS.  For that we have been lucky.  Here are some updates on his EOE.  Also, EOE Awareness week is later this month- so if you have questions, please  feel free to ask!  We will do a blog post specifically about EoE in two weeks.  It is a rare condition, and many people have not heard of it before.

  • Last August, Kemett had his third scope with biopsies in his esophagus as well as an impedance probe study done.  The scope biopsies showed that his EOE is still mild and gotten a little better, which is wonderful! When they examine the biopsies they do not know if they are allergy cells or caused by reflux.
  • Impedance Probe: This was a probe that went into Kemett through his  nasal cavity, and went down into his stomach.  It had a devise that tracked reflux levels as he ate, laid down, drank liquids, and slept.  We had good news from this test, that showed Kemett did not have reflux issues.
  • Nexium: Kemett is on nexium 2 times a day.  A protein pump inhibitor is the only treatment for EoE at the moment.  Dr. Scheimann feels that if we can will be able to start weaning him off of it starting in May!  Then we would move to another med that won’t interfere with his absorption of vitamins and minerals.
  • December Visit- we saw Dr. Scheimann in December and she thought he looked good, except that he had not grown or gained weight since August or before.  This could be because he was not getting enough protein in him.  We decided to increase protein volume and come up with ways to add vitamin C when he ate protein to help absorb iron.  Then we did more blood work a few months later.  Dr. Scheimann said that she was not as concerned about his new levels.  She did further blood work and we sent that on to our allergist.  We did add in an iron supplement.
  • We see her again in June.
  • So far Kemett isn’t exhibiting any signs of EoE like food getting stuck or choking but we are on the look out at all times!

Allergy:  We see Dr. Varshney every 6 months.  We saw her in February and had blood work completed before the visit.  Unfortunately, Kemett’s levels went up on all the foods he is allergic to, so we cannot add anymore new foods in at the moment.  She said that we will not do another scope until Kemett is completely off of Nexium, so might not be this year.  So he is still allergic to:

  • Eggs
  • Soy
  • Dairy
  • Wheat
  • Peanuts
  • Tree nuts

Dr. Scheimann has given us names of doctors who specialize in EoE across the country, but until Kemett regresses or has symptoms, we will wait to visit them.

We are happy things are going the way the are with Kemett so far.  His diet is always a struggle, and making sure he is getting enough protein.  We have to be creative.  We will do a post this month on meal planning!  This way of eating has become part of our life, and I’m not sure I know any other way of having a child.  We’ve been dealing with his allergies since he was 8 months old.  We are so lucky to have family, friends and a school who are protective of Kemett and his health.  We will have a blog post on this and how others can help too!

Please let us know if you have any questions!  Thank you for you the love and support!

Love,

The Demands

 

Kemett and Mama

Kemett and Mama

 

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