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Timothy-26K!!!

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15 years 3 months ago #649 by lucidawn
Timothy-26K!!! was created by lucidawn
He will double the dose of Nplate today. Hopefully he will at least hold counts and maybe he will come up. Well, I'm not gonna hold my breath. You know the best thing to do when you are at the top of a roller coaster is hold on for your life and SCREAM!!!! :ohmy:
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 #650 by dots
Replied by dots on topic Re:Timothy-26K!!!
Woohoo! Hold on tight!

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15 years 3 months ago #654 by xray001
Replied by xray001 on topic Re:Timothy-26K!!!
I have my fingers crossed for you, and I am praying that Tim gets some resolvment.

Michelle
Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594

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15 years 3 months ago #656 by nadia
Replied by nadia on topic Re:Timothy-26K!!!
Its great to hear something positive and my fingers and toes are also crossed and don't forget you are supposed to enjoy the ride!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Best wishes for next count,
Nadia.

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15 years 3 months ago #659 by alisonp
Replied by alisonp on topic Re:Timothy-26K!!!
Wow, that is really good. Bet you can't really believe it. Anyway, you aren't at the top of the rollercoaster really - I reckon you are on the bit where it is still going up and you are wondering just how high it is going to be and what its going to look like on the other side! Hopefully not too scary eh?

Good luck, Ali B)

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  • Angel85
  • Offline
  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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15 years 3 months ago #661 by Angel85
Replied by Angel85 on topic Re:Timothy-26K!!!
Thats good to hear, hopefully he will get a positive result from the Nplate, thats what my doctor whats me to try, we just have to wait to find out if it has been approved for me to use.

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15 years 3 months ago #671 by lucidawn
Replied by lucidawn on topic Re:Timothy-26K!!!
True Ali, I think we are still climbing the roller coaster. Hopefully we will get to stay on the high side for a long time. Angel, I hope you get to use Nplate and that it works for you. Tim has not had any side effects so far. Nadia...it must be hard to walk with your toes crossed, lol...I'll join you though :lol:

Thanks everyone for the encouragement.
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 #677 by tacmom
Replied by tacmom on topic Re:Timothy-26K!!!
Glad to hear his count went up just a little bit from his first injection! :) Hope his 2nd injection brings him up even more! I know our dr kept going up until Caitlin was at 50 and then kept her at that dose until she dropped. It took her a full year and a half to get to get to the maximum dose. Timothy's max dose will probably be at the adult level of .10 mcg where Caitlin's was only .07 mcg. Even happier to hear that he isn't experiencing any side effects :)
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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