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ugh!

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13 years 7 months ago #23030 by lucidawn
ugh! was created by lucidawn
He's 5k today. So we (at my request) are going to try some steroids on top of the NPlate. So they brought the Nplate up and the dose was not right (3mcg/kilo instead of 4). I'm glad I asked...so they went down to try to fix it. Hopefully this is going to bring him up a little. IDK. We're also going to ask for another round of rituximab. Still, he has not seen his doctor for months. He sees the nurse practitioner. On an up note, I think the Nplate, though his counts are not up, might be helping to minimize the bleeding symptoms.
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 7 months ago #23034 by alisonp
Replied by alisonp on topic Re: ugh!
Well, on the positive side, 5 is 500% better than 1!!! Repeating the rituxan seems like it might be a good idea too.

Did you ever get an answer about his stomach pains and the goblets of sacrificial blood? :lol:

Ali
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13 years 7 months ago #23050 by lucidawn
Replied by lucidawn on topic Re: ugh!
He has H-pylori but no gobblets of blood. So they are treating the H-pylori and raised the Nplate and are gonna do a steroid pulse at my request.
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...
More
13 years 6 months ago #23266 by tacmom
Replied by tacmom on topic Re: ugh!
I am so sorry that he is not doing any better! :( I also cannot believe that the hematologist does not follow protocol. He should be increasing each week until they get his count above 50K. Caitlin is still doing great, but we have a hematologist who follows everything to a "T" because he is the head of the study at our hospital.
Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...
Moderators: jaycharness
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