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Update from Cinci...


Forum: Children with Special Needs

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  #1  
July 22nd, 2011, 03:33 PM
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Location: Knoxville,Tennessee
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Dr. H from hem/onc called and gave us the results. He said everything was within normal ranges except for one thing. I can't remember what that one thing was but is more of an indicator for further study rather than a test in and of it self...a test which can only be done in Cinci. He said his growth factor levels are normal but suggested trying to follow up with an endo to see if growth hormone therapy could still help. Dr. H is wondering if maybe his body just doesn't respond well to the growth hormone he makes and needs either extra hormone or maybe his doesn't work right. It will be extremely difficult to get this approved through insurance though so that is not a likely thing to happen. He also wants to send a genetic screening for Pearson's syndrome. It is a mitochondrial disorder that causes anemia, pancreatic insufficiency, and FTT. He highly doubts it will come out positive but wants to rule it out completely rather than dismissing it on the off chance that he actually has it and has no blood symptoms. The good news...he does NOT think Danny has SDS which is amazing news to hear. He does think the pancreatic insufficiency and FTT are related but doesn't know how else they could be related. He said that if the tests they want to do if/when he comes back up there come back normal as well it will be the time to accept him as an anomoly and treat whatever comes along. He said he is constitutionally short...which I don't really know what that means. The good news is that when he had the bone age done he was 3 years 11 months and the age came back at 4 yrs 0 months. He has the EGD with biopsy and inpatient ph probe monday and Tuesday so I will either be all over the comp or 100% away from it depending on how Danny does...
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  #2  
July 23rd, 2011, 02:56 PM
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Location: OH-IO
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I hope he doesn't need GHT, giving the shots everyday sucks. I REALLY hope he doesn't have Mito, any form of it!! ((Hugs)) I'm sorry you have no answers yet.

btw...I wanted to tell you that it looks like the Dr you saw in GI (Dr B) might be operating on Ava and I'm not thrilled with it. I might ask for another Dr.
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  #3  
July 23rd, 2011, 03:33 PM
Mega Super Mommy
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Sorry... I don't know enough about him to say either way. Maybe since she has a set diagnosis he will treat her as a human being. I know I will request someone else should I ever go back...
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