PWS Awareness Month – Day 4

Hi Everyone,

In February we went and visited Dr. Miller.  We had a great trip, and even had a chance to go to the beach!

Dr. Miller thought that Kemett looked great.  His BMI was high but once she saw him she was happy with his weight and height.  Kemett’s IGF-1 levels are high right now, but there is no where for us to cut carbs and she didn’t want to lower his growth hormone either. At the moment, they don’t know much about prolonged high IGF-1 levels.  There are some studies that show it could cause colon cancer when he is an adult.   So right now we are keeping his growth hormone where it’s at and will continue to monitor through blood checks.  She thinks it will lower naturally over time.

We are going to start a therapeutic listening system next week, recommended by Dr. Miller.  We have purchased the headphones and our occupational therapist is getting trained this past weekend to get us started.  This will help increase Kemett’s processing time.  We are looking forward to trying it and will try to write a blog post to explain this more next week!

Kemett’s anxiety has started to increase, not about food but just about things in his life.  I am working with him to do deep breathing, progressive muscle relaxation and yoga.  I want to help him build the tools he can use when his anxiety gets high.  I’ve also made social stories especially when we leave town so he knows what we will be doing.  He’s a homebody (wonder where he got that from!).

Dr. Miller was not surprised to hear that Kemett’s cognition is with his peers or above!  He is one smart kid!

Overall it was a positive visit, and we will see her again next year.

We drove to Florida this year, so we got to stop and see my grandma to and from, and we spent a few nights in Destin, Florida.  It was a nice break for our normal routine!

Please let us know if you have any questions!  Enjoy some pictures from our trip below!

Love,
The Demands

 

Destin Beach

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Enjoying our trip!

One thought on “PWS Awareness Month – Day 4

  1. Every step you take leads you down the path to Kemett’s success. So proud to know your family.
    Walt and I are 100% behind you!!!
    IN IT FOR KEMETT!
    Love💞Miss Kim🍀 and Mr. Walt

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