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Timothy 4k

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13 years 9 months ago #20800 by lucidawn
Timothy 4k was created by lucidawn
Its no surprise as he has peteciae all over him. Weird that he was able to have a partial remission for just four month. Nplate, of course.
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 9 months ago #20851 by tacmom
Replied by tacmom on topic Re: Timothy 4k
It's been a while since I've heard about Tim! I'm sorry to hear that it is not under good circumstances. Is he back on Nplate after taking a short break? We tried to get Caitlin off because we thought she was in remission. The hematologist wanted her to do a half dose for a few weeks before stopping every other week, but her count ended up dropping too low. Now she is back on the minimum dose and count the other day was 161!

If Tim gets back on the Nplate, I hope it does as well as it has in the past for him! Hope he is also more careful with lower counts, but I know many of our kiddos do not take these counts to heart and think they are indestructable!
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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13 years 9 months ago #20853 by lucidawn
Replied by lucidawn on topic Re: Timothy 4k
Pauline, that's what I wondering about Tim too, was he in a remission. I thought maybe, but he wasn't tested most of the time he was off the nplate, just went by symptoms, so who knows. My theory, and I think you likely have thought of this, is that the Rituximab has helped them to respond better to the Nplate than if they didn't have it. We may have tim do a second round of Rituximab. The hemonc seems to think it may help. Speaking of the hemonc, he doesn't like giving NPlate regularly, he always waits until Tim is under 100k to give it. Problem is, he often drops veyr quickly. Just wish he could get a steady dose, but I do understand his caution.
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 9 months ago #20875 by alisonp
Replied by alisonp on topic Re: Timothy 4k
I can see the logic of your doctor's approach - but I think if it were my child, I would prefer the greater consistency offered by a weekly dose. Dougie's count seems to have a degree of natural variation, and I find its very very difficult to work out whether I should be restricting the activities he is doing or not, And Dougie finds it equally difficult to cope with being able to do something one week and not the next.

It is very possible that Tim has just had a low count but no symptoms for the last few months. Dougie had a count of 5 last week which would previously have resulted in lots of bruising but he only had petechiae (apart from the mammoth bruise on his leg that is!). I only realised that his count must be low when the blood pressure cuff left a bruise....

Hope that the NPlate soon sorts Tim out again anyway

Ali
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13 years 9 months ago #20916 by lucidawn
Replied by lucidawn on topic Re: Timothy 4k...STILL COVERED in petechiae
He's got it all over him now and his acne is seeping blood. I think he needs a bit of a higher dose of NPlate than 1mcg per kilo. He seems to have regressed a little, but I think its because of the lack of consistency in dosing. The hemonc says he was dropping because of the nplate (which I know happens to a degree), but he's not had it since august, so I don't think it has anything to do with his tendancy to drop to zero in a matter of hours. I'm gonna take him to the ER tomorrow for evaluation and possible IVIg to boost him for a few days.
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 9 months ago #20938 by tacmom
Replied by tacmom on topic Re: Timothy 4k
I hope you were able to get everything settled with Tim! I am also in agreement that Nplate shouldn't be given with counts over 100. Unfortunately, on the trial, I have no say so in what happens so Caitlin gets a shot every week unless her counts are over 200. At least for the last year, she shows a lot of stability rather than the roller coaster counts. Her count three weeks ago was 160 and last week was 161. They usually stay within a 20K rise or drop. When they had her on a 1/2 mcg dose, her counts were falling quickly and they knew that if they took her off, she was going to be back under 10 so they decided to keep her on weekly. They really want her to stay above 80 due to her activities. I would also be like you...if Caitlin ever gets into the same boat where her counts are low again, I would try Rituxan in a heartbeat again even though it didn't seem to work.
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...
More
13 years 9 months ago #20945 by lucidawn
Replied by lucidawn on topic Re: Timothy 4k
I asked Tim's hemonc about taking lower doses than 1 mcg per kilo and he said there were no studies (ie no precedent) to dose less than 1mcg per kilo.
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...
Moderators: jaycharness
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