PWS Awareness Month -Day 5

Hi Everyone,

First, I want to say Happy Birthday to my mom!  We love you so much!  Thank you for all you do for us!

Today I thought I’d give you a quick update on the rest of Kemett’s doctors:

Dr. Scheimann: We saw her in December.  Kemett is looking good but we won’t know what’s really going on with his EoE until we do a scope in June.  We haven’t been able to get a scope done in almost two years.  Kemett has been off of nexium twice a day, and we hope everything looks good to take him off of it completely.  He’d go on zantac or something like that if this is the case.  His eczema has been so much better last summer and even now as it’s getting hot (that’s when it’s worse for him), so I hope that’s a good sign.

Dr. Kang: We have our sleep study in June.  It got pushed because Kemett got sick.  You do not want to have a sleep study when you are congested because it will not be accurate.  Last year Kemett’s study showed mild obstructive apnea due to his low tone in his mouth.  Kemett ended up having fluid in his lung and a partially collapsed lung.    Our kids can have such a high pain tolerance and hide illness.  We cannot thank Dr. Kang’s office enough for their help on the phone and in their office as Kemett became scary sick.  It came out of nowhere, but now he’s doing great!

Dr. Kim (dental): Kemett’s teeth are looking great so far.  We are getting sealants put on in June when he goes under for his scope.

Dr. Varshney: Kemett’s egg levels went down, and soy and some treenuts are lower.  If he scopes clean in June we might get a chance to trial some new foods!  Everything else is very high and could be anaphylactic if he consumed, so we must continue to be very careful.

Dr. Zapata: Kemett’s tonsils are tiny and looking good still!  We will talk to her again after the sleep study results come in.

Dr. Kelly- He is the cranial facial plastic surgeon that we see every two years.  He said Kemett’s jaw is still looking good and no need for surgery anytime soon.  So he is now an as needed doctor!

Dr. Busse- Kemett’s eyes looked good when we saw Dr. Busse last year.  Kemett does cross in with his right eye occasionally but it’s normally when he’s extremely sick or tired.  Dr. Busse said he’d need to be doing this 20% of the time for us to be concerned and he does not.

Dr. Sargent- Kemett’s hip was a little tight on one side, so we have been working with PT to do some stretches to help his hips.  We will go back in a couple of months to have another xray done.

Overall, things are looking good.  Kemett has a co-case scheduled in June for his upper endoscopy with Dr. Heintz and sealants with Dr. Kim.  We are nervous because he will be under longer than he has been before.  Last time we had a hard time waking him up which is incredibly scary.  Kids with PWS don’t metabolize medications the same way we do in their system, so they get very small amounts of anesthesia and no narcotics.

Please let us know if you have any questions about Kemett’s doctors!  Thanks for your support!

Love,

The Demands

 

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