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How low can you go?

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15 years 3 weeks ago #232 by vsessions
How low can you go? was created by vsessions
Hello - I am a new member to this site but just want to say thank you to everyone who does post here - it is such a relief to read your posts and see that we are not alone.

My daughter Remley was diagnosed with ITP 3 months ago with counts in the 1K. They have done WinRho, IVig, Prednisone and dexamethosone. The highest count she has had since treatment is 95K, but most are below 50K. Her bone marrrow test showed everything was working fine and as she is 3 1/2 years old we still are hopeful that she will totally come out of it (sooner would be better of course).

I was wondering what platelet count your doctors will allow your children to not be treated with and just watch and wait. We are quite comfortable with this approach as Remley has never been a bleeder. They have let us wait at counts above 10K so far (as long as not tons of petechaie) but get really jittery under 10. Is this about the same for you guys?

Thanks again for these posts. They have been a lifesaver for me.

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15 years 3 weeks ago #240 by liam12
Replied by liam12 on topic Re:How low can you go?
hello,Liams doctors are happy for him not to have any treatment,ie,steroids etc... until his levels drop below 20k,this seems to work well for us,although the last time Liam was on the steroids for a week he did not respond to it,his level only increase by about 10k,next time we might have to try the transfusion,i hope not,good luck,jenny

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15 years 3 weeks ago #261 by vsessions
Replied by vsessions on topic Re:How low can you go?
Thanks! We took her in today and she was at 9K. They were thinking about maybe starting rituxan but as she is so young and its only been 3 months we opted instead for some CellCept. Hopefully this will do the trick.

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15 years 3 weeks ago #262 by dbishop
Replied by dbishop on topic Re:How low can you go?
Hi there,

I'd have to say that 20,000 seems to be the magic number for treatment but every specialist seems to be a bit different. We too are doing the watch and wait approach with our son Devyn who is 2 but if he drops below 20,000 or becomes symptomatic then we will then talk about treatment. This is our second bout with ITP but still praying everyday that it too will go away.

I hope that your journey with ITP is not a long one but if by chance it is then this is a great place to get info, ask questions and even vent if you have too!!

Good Luck with everything

Deanna

Mommy to Devyn 3 years old

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15 years 3 weeks ago #265 by alisonp
Replied by alisonp on topic Re:How low can you go?
Hi there,

For my son's consultant, there is no magic number. His rule is to treat symptoms not counts. If there is no serious bleeding (i.e. not just bad bruising or petichiae) then he wouldn't treat. Says the treatments are all risky in themselves. He is one of the top UK childhood ITP experts so we trust him a lot. My son has been down to 1 on a couple of occasions now and not been treated. We've been going 8 months now with no real problems from this approach.

Having said that, it makes the local hospital and both his grandmas very nervous!!!

Hope your daughter improves soon - she is in the right age range for it to be a temporary problem, so I will keep my fingers crossed for you!

Ali

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15 years 3 weeks ago #271 by lucidawn
Replied by lucidawn on topic Re:How low can you go?
My son is riding at about 1k most of the time. His hemonc is trying to get his count above 10k. With that said, he treats with IVIg any time he has bleeding symptoms, which usually gives him a temporary rise of about 30k for a few days, and then it trickles down to about 9k in about a week, and then 1k a few days later. But it stops the bleeding symptoms for a few weeks. We have had all the first line meds to treat ITP, and have moved on to Rituxan and Promacta, and now we are looking for new options. We will be talking on Friday about our next step. Not sure what we will be doing.

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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