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

 

Kemett is 20 Months!

Hi Everyone,

I know it has been a while since our last update.

We have had some fun times, as you will see in pictures.  We went to Denver in January to visit our best friends, the Chugers!  Kemett got to play in snow for the first time.  Kemett got his first therapy bike, got to see Great Grandma Demand, and went to his first concert- Wanda Jackson at the Lonestar Roundup!

You may also see in pics that Kemett got a play kitchen.  There is no food, just plates, pots, pans, spoons, etc.  Maybe next month I can talk more about the kitchen.

February was a busy Doctor month for us so here is an update:

  • ENT- We discovered Kemett had fluid in his ears. His ENT put him on nasonex and within 6 weeks it was cleared up.  We learned his tonsils and adenoids are still small.  He also had a hearing test at our follow up and he had perfect hearing!
  • Pulminology- Dr. Kang put Kemett on singulair to help with the fluid in his ears and to make sure he was in the best condition for his sleep study he had in March.  We got great news- Kemett’s Sleep Apnea is now MILD!  This was such amazing news- we have worked hard this past year to figure out all of Kemett’s health issues and get them under control.  Feels good to see they worked.  And is nice to sleep through the night without beeping noises.
  • Dentist- Kemett’s teeth look great!
  • GI- Dr. Scheimann thinks that Kemett looks great.  They were happy with his diet and decided it was time to get him off of his elecare formula.  This was such great news!  His scope in December showed his Eosiniphilic Esophagitis had improved.  We will do another scope in the next month or two to see how he is doing.
  • Allergist- We did skin testing and blood work.  We were hoping to add soy and/or almonds but unfortunately, Kemett is allergic to both still.  We were able to introduce beef and corn.
  • Nutritionist- Thanks to Melanie Silverman we were able to wean off of elecare Jr.  We have milk options that are enriched- rice, coconut, hemp and flax.  He is also on a calcium supplement, multi vitamin, and probiotic.
  • Therapies- Kemett is not speaking much, but signs what he needs.  He also took 5 steps a few weeks ago!  He is doing so well in therapy!

Endo- Dr. Miller- This is the big one and gets it’s own special paragraph.  We did his routine blood work in February and his IGF-1 Levels were high, 258, which means he has moved into the next phase of PWS, 2A.  Typically in this phase kids start gaining weight quickly because their metabolism slows down.  It can be controlled by diet.  Our nutritionist and Dr. Miller agreed that his diet is perfect right now, low carb, high fat and protein.  They also felt that weaning Kemett off of elecare might help.  We will retest his blood next month and hope his levels will lower or even out.  For those interested in nutritional phases and IGF-1, please read Dr.Miller’s article here.

Next Month is Prader-Willi Awareness Month!  I hope to answer people’s questions about PWS so please feel free to ask us anything.

Thanks again for all of your support!

Love,

The Demands

 

Enjoying the Snow in Denver!

 

Kemett and Grandma Demand

Kemett and Grandma Demand

Visiting Dr. Scheimann

Mardi Gras

My new Kitchen!

Spring fun!

Sleep Study

Parents just don’t understand

Easter

My new therapy bike!

Lonestar Roundup and first concert!

Lonestar Roundup

Lonestar Roundup

My new chair!