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Ugh...8k

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13 years 7 months ago #22855 by lucidawn
Ugh...8k was created by lucidawn
I expected low, but not that low. We had a "positive" development though. Since he had stomach pain, Tim requested that he be tested for H-pylori (stool sample). He's had it before. So he tested positive and is now under antibiotic and prilosec treatment. So, this might be why he's been so low lately, though recieving treatment last time did not help...but maybe he's had it all along...but if so why did he have a stable year of good counts with minimal treatment (NPlate 1mc/kilo)? Oh so many ifs. On the other hand, I am frustrated that they still did not raise Tim's Nplate this week from 3mc/kilo to at 4/kilo. The dose is obviously having VERY little affect on his counts and bleeding. They want to wait two weeks before raising it again. The midwest is not the best place to be for medical treatment...at least not the KC area. I'm half tempted to move again to either california or back to NC. Maybe I'll try the Kansas side of KC. Tim's getting very frustrated with the hemonc office, has missed alot of school (about a month now), but I think the true frustration is with his own body...though he's venting on others. Anyway, thanks for listening.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...
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13 years 6 months ago #22874 by alisonp
Replied by alisonp on topic Re: Ugh...8k
BAD!!! Are there not good hospitals where you are? Can't you just transfer to a different doctor? I know how you feel a bit though - if I had to rely on our local hospital, I would consider moving myself, but fortunately I've managed to get Dougie seen at the regional children's hospital - an hour away but its worth the journey.

Hope Tim gets out of single digits soon - no comfort I am sure, but I reckon Dougie's right there with him....

Ali
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13 years 6 months ago #22876 by lucidawn
Replied by lucidawn on topic Re: Ugh...8k
Thanks Ali...yeah, its frustrating. The big problem is insurance. We don't have alot of choice where to take him. Right now we are in the ER with a headache and other pains (kidney, joints). They don't seem to think that he has an bleeding in his brain, but they are looking into doing an MRI or something...but they say probably not. It might be NPlate side effects (my opinion), but I think an MRI wouldn't hurt. His neuro is checking out fine.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...
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