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Old 01-16-2011, 12:12 AM   #16
Join Date: Jan 2011
Location: St. Paul MN USA
Posts: 6
mom2owen HB User
Re: Question for anyone with sweat test in the 30's.

I was just checking out the cystic fibrosis forums. I saw a post from someone there whose son is named Owen. I had a weird moment where I was wondering if I had posted there a while ago when CF first came up. But no, it was not me. Then I saw your post on her thread asking if it was me! How crazy! What a small cyber world we live in! I have not joined there, I think it is a process and I might not be willing to see that we might fit in. Oh, the denial games we sometimes play!
I have a friend of a friend who is a geneticist in CA. I have sent some info to him and I look forward to getting his insight.
Also, Jessmom, I looked up Schwachman Diamond again. The thing that kind of freaked me out what the petichiae. Owen has this pretty bad. He gets it on his chest and sometimes around his eyes. He never used to get it. He also has high WBC in his CBC. I am not too sure why I would think it isn't something to look into. With fresh eyes, it does seem like something to at least rule out.
I think right now I am more confused than ever and just a bit overwhelmed. It always comes in waves. I will keep posting here and lurking at the CF site. Maybe something will click.

Old 01-16-2011, 03:12 PM   #17
Junior Member
Join Date: May 2010
Posts: 13
Jess mom HB User
Re: Question for anyone with sweat test in the 30's.

Hello again. Being redundant here, but I understand how you feel right now; not having a diagnosis is a really hard thing to live with. We go to Stanford this Friday for a second opinion for my daughter.
Concerning Shwachman diamond, LOW white blood cell counts is the primary symptom, along with fat malabsorption. You mentioned high WBCs....these are not part of SDS and can be common simply because someone is fighting off a cold or flu. I must add a disclaimer, though, because neutropenia (low WBC) can be intermittent and hard to catch. So, if you come to a dead end, you might as well bring up SDS to docs anyway. Maybe they could order a series of CBCs.
I know joining the CF forum seems like taking the next stairstep up toward admitting it might be CF, but I still encourage you to post questions there. I understand exactly how you feel; at first I didn't want to bother anyone there when I didn't even have a diagnosis, but I found them to be an extremely gracious, understanding group of parents who were once in our shoes without a diagnosis and many will say that if they only had a forum to post questions in at the time, things would have been so much easier; therefore, they seem happy to help, diagnosis or not.
One more thing, again, not to be redundant, but CF still sounds to me like a possibility in your case. I'm not saying I think for sure your son has it; I wouldn't presume to be the expert here. I just think that if it's a possibility, it needs to be ruled out. Good luck with all of this. You and I are both in the same shoes.

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Old 01-21-2011, 09:38 PM   #18
Join Date: Jan 2011
Location: St. Paul MN USA
Posts: 6
mom2owen HB User
Re: Question for anyone with sweat test in the 30's.

So Jessmom,
I just wanted to let you know that Owen has now gained 9 pounds on Creon. But, get this, his GI at Mayo wants to take him off it and try to redo the fecal fat test again! Yep, the one that made him so constipated he didn't go for two weeks and started vomiting as well. Whatever, we are not doing it! We got the blessing from his ped not to and I am so glad for that.
And, we are going to a CF clinic in early February. Hopefully we will learn more soon.
How are you??

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Old 01-22-2011, 10:51 AM   #19
Junior Member
Join Date: May 2010
Posts: 13
Jess mom HB User
Re: Question for anyone with sweat test in the 30's.

Hi mom to owen-
So glad your son is gaining weight! Funny you mention that fecal fat test. We just got back from Stanford yesterday. We were seeing a GI specialist to try to sort out my daughter's lack of diagnosis. We got NOWHERE. It was the typical, "Don't quite know what's causing your daughter's symptoms. It could be this. It could be that. We could do this test, or that test. We're not entirely sure it's fat malabsorption, should do the 72 hour." My husband and I are at a crossroads. That test is the test from H______! Right? Because my daughter is otherwise very healthy and we have gotten nowhere anyway, we are so tempted to JUST QUIT trying to figure things out. So, for now, we are going to refuse the test. Same decision you just made, coincidentally! Hey, I was thinking about you and the fecal elastase test. As I understand it, that one does not have any requirements about what you eat first. You just simply collect the poop! So maybe that would be the test to do for you guys. It is the one that will prove pancreatic insufficiency.
I would love to keep in touch more, I have more thoughts, but gotta run to get my son to a basketball game. Take care, and do hang in there. I know full well (especially today after our appointment yesterday) how frustrating this all can be.

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