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Timothy's weekly update

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15 years 3 months ago #6265 by lucidawn
Timothy's weekly update was created by lucidawn
Starting with his count today...drum roll...338k!!! Holy cow! So they decreased his NPlate to 2mcg this week. I'm beginning to wonder if he might be having a big of a latent response to Nplate...a bit of one. Wouldn't that be amazing?! Its been about eight or nine weeks since he had Rituxan, I think, and they can have a response up to nine months later. So, it could happen.

Tim has his dental appointment tomorrow...I'm hoping for a simple extraction of his tooth. One stop would be nice. Again, I can hope.

Tim's brother, Isaac, is home. His eye is worse and I'm told by his optho that he has a 90% chance of losing the eye-only 10% of surgery being successful. Also, he has to wait 2.5 weeks for surgery and it could get worse in that time. He may end up with a prosthetic eye this year. Best case scenerio is that his own eye does not die and he regains very, very little sight-not any functional sight...light and shadow basically. But at least he would have his own eye.

He is happy to be home, though. His father's house was, frankly, unhealthy. I was shocked at the conditions and very happy that I decided to bring him home. It was quite bad. His father loves him, but it was very bad conditions. Like something from Animal planet ASPCA cat nightmares. 14 cats and two heavy smokers and BAGS of trash...BAGS of trash. It was horrible. I feel bad for him-I think he must be depressed or something (the dad). Maybe being on his own again will help him shape up. The stress might have been too much for him.

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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15 years 3 months ago #6314 by alisonp
Replied by alisonp on topic Re:Timothy's weekly update
Hi Donna

Hope that Tim went on OK at the dentist yesterday. There seem to be a lot of stories on here at the momenet about N-plate producing very high counts with people who've also had rituxan. I'm sorry to hear about Isaac though. It must be a relief for you to have him home, and I just hope that his operation results in him being in the 10% "miracle" category when it happens.

Ali ;)
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15 years 3 months ago #6323 by tacmom
Replied by tacmom on topic Re:Timothy's weekly update
Tim is continuing his upward trend! Better to go up than down as long as it's not too high! :) I also hope his dental appointment went well! Sorry to hear about Isaac's eye...was hoping to hear better news about that! I also hope that some miracle happens where he has some eyesight and doesn't lose it!

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...
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15 years 3 months ago #6326 by lucidawn
Replied by lucidawn on topic Re:Timothy's weekly update
Ali,
I'm thinking the same thing...the Rituxan may be a contributing factor in the high counts with Nplate, just like Caitlin. Pauline and Ali, I'm also hoping Isaac will have better results than expected. I hope to save his eye and also restore some vision. But at least save his eye and not have to have a prosthetic. I'm hoping to hold out as long as possible on that. He's not having any pain, so that is a plus.

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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