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Frustrated

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15 years 7 months ago #1260 by Angeleyes75
Frustrated was created by Angeleyes75
Well after nearly 9mnths of relativly good counts 50-60.
We took Dale to appointment Wed expecting the usual he's looking good see you in a couple of months. Only to be told his count has drop to 27 ( possibly still dropping due more bruising and petechia, no bleeds yet fingers crossed). Just when I thought things were looking good I could handle the 50-60 cause he could still be a relative normal kid. Being nearly a 4hr drive away from the hospital we have to be a bit more cautious.
Now I have to try and slow him down a bit again, try telling a 3 yr no you can't jump on the trampoline, no you can't ride your bike over the jumps with your big brother and the list goes on. I hate feeling frustrated because we have to limit our weekend activities which means the older kids miss out.

I know it could be worse and I count my blessings that its not.
Just frustrated.


Dales mum.
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15 years 7 months ago #1267 by lucidawn
Replied by lucidawn on topic Re:Frustrated
I know its frustrating. So sorry for the drop. Hopefully he will come back up. You migth think about letting the older kids have their fun, though. They will resent your little one if you don't. Just from experience...
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 7 months ago #1271 by alisonp
Replied by alisonp on topic Re:Frustrated
These fluctuating counts are SOOOOO annoying!! I agree, at 50 or 60K you can effectively forget about ITP because it isn't a problem and my son at least has no symptoms. So it is a big deal all over again when he gets a low count.

Why don't you take Dale to do something special but safe like going to the flicks with a friend (sorry, movies) while your other kids do their thing. He wouldn't even have to know about it.

Hope you have a great weekend

Ali
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15 years 6 months ago #1280 by xray001
Replied by xray001 on topic Re:Frustrated
Yes, it can be VERY FRUSTRATING!!!

One day, you think they are doing well, and worries are over, and the next - things come crashing down. It is such a struggle sometimes.

Keep your chin up and good luck with your little guy,

Michelle - Danica's mom
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
Moderators: jaycharness
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