PWS Awareness Month- Day 3

Hey Everyone,

Today we are going to continue our updates on Kemett’s doctors.  Today we will talk about Pulmonology, ENT and Cranial Facial Plastic Surgery.   (To catch up from last year, here is the link from our blog last year https://lovethedemands.wordpress.com/2015/05/08/pws-awareness-month-day-8/).

Pulmonology: We still see Dr. Kang every 4 months for Kemett’s apnea and asthma.  We absolutely love he and his team.  Kemett has his 4th sleep study in March and it came back with mild sleep apnea.  There was not much change from last year’s sleep study.  At least it did not get worse but wish it would continue to get better.  Kemett is still on the same meds for his asthma as before and we are keeping them under control.  We actually had a good winter with no sickness, just some allergies.

ENT:  We see Dr. Zapata every 6 months to check on his tonsils and adenoids.  We saw her two weeks after our sleep study, and his tonsils and adenoids are still small.  So that is good news.  We just keep monitoring them for now.  At any point they could get big and he would need them removed.  So we listen for snoring at night, look for daytime sleepiness, etc.  If we see signs of this, we get him back to ENT and pulmonology before our appointment times.

Cranial Facial Plastic Surgery: We don’t see Dr. Kelly until May 9th, and will be able to give you all a small update at that point.

This team is so important to us because if we didn’t have Kemett monitored for his breathing, respiratory function and tonsils/ adenoids Kemett could die being on growth hormones at the same time.

If you have any questions, please feel free to ask us anything!  Thank you for your support!

Love,

The Demands

 

Strong and Smart

Strong and Smart

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!