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update on "waiting"...

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Old 05-25-2009, 08:56 PM   #1
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Location: texas
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kirsten08 HB User
update on "waiting"...

DS is a happy 23.4 lbs. I am so clothes are acctually needed for the first time in the better part of 10 months. He is GROWING!!!! His bile sample tests came back positive for low pancreatic enzymes. He has upped his enzymes again and that is helping with the break through poops. We have started some supplements as well. As for the genetic test ...I am having a hard time finding out which test he got. The nurse I talked to on friday said it listed 30 markers it tested for, but was unable to tell me the exact name of the test. We go back in on the 1st and hopefully I can get a print out when I go.

I was interested if anyone else on this board had just the pancreatic issues and no CF? our doctor says that it is very rare but possible. I can't find anything about low pancreatic function and infants that is not CF or SDS. I would love to say that we might be out of the woods but have a feeling that it is too early too tell. THX!! ~k

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Old 05-26-2009, 08:20 AM   #2
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Join Date: Nov 2003
Location: Midwest
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Ratatosk HB UserRatatosk HB User
Re: update on "waiting"...

I think it's important to find out what kind of genetic testing your child got. Especially being there are over 1500 different mutations for CF -- ambry amplified or quest are two of the companies with extensive testing... DS' has a very common mutation -- two copies of delta f508, so his test results came back positive right away.

I know locally of a child who takes pancreatic enzymes for a malabsorption disorder, but also has "asthma" and I suspect it's just a matter of her CF not being diagnosed yet. Around here it seems they only do a sweat test after newborn screening and usually don't look any further if the results come back negative...

Old 05-26-2009, 08:58 AM   #3
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kirsten08 HB User
Re: update on "waiting"...

I am trying to get them to put a diagnosis on him so that we can have some idea of what we are looking at long term. They would be happy treating symptoms and waiting it out. Thanks ratatosk i will be getting the test results faxed over today so that i can find out which test he had.

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