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It's been 3 months and no change ...

9 years 8 months ago - 9 years 8 months ago #44533 by leelynn18
It's been 3 months and no change ... was created by leelynn18
My daughter (now 20 months) was diagnosed with ITP in July. Her count has varied between 5-8k since then. She's had a few minor bleeding issues. They've tried IVIG and WinRho... the IVIG worked slightly for less than a week - her count went up to 15k the following day, but was down to 8 just a few days later. The WinRho didn't work at all. Drs are talking about if it's not better by 6 months, they'll do a bone marrow test to rule out anything else. For now, we're at a standstill.

At her next appt (Nov 3) I'm going to urge them to do the test now vs waiting because I can't help but feeling what if it were something else and waiting is hurting her chances.

I understand both the above treatments are temporary, but should last at least a few weeks. It's rare for them to not really work at all...which makes me think maybe this is something else.

Has anyone else been in my shoes?

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
9 years 8 months ago #44536 by Sandi
Replied by Sandi on topic It's been 3 months and no change ...
IVIG lasts only days for many people....don't worry too much about that. And as for Win-Rho, there are many people who have no response at all, so that is common also. I had Win-Rho six times and never got any rise from it. Everyone is different as far as treatments go. I'm surprised they haven't tried steroids, even at a low dose.

ITP can take a while to improve. Some parents have given up hope and then out of the blue a few years later, counts started to go up and continued to do so.

Hang in there. I have seen your situation many times over the last 17 years that I've been here.

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9 years 8 months ago #44540 by leelynn18
Replied by leelynn18 on topic It's been 3 months and no change ...
Thank you. The way the Drs talked, the treatments should have worked even if just for a couple of weeks. It's just so nerve wracking to have such a young one who doesn't understand the consequences of getting hurt....and an older brother at that!

They mentioned trying steroid in Jan depending on the bone marrow results. They said because she hasn't had any major bleeding issues, we're ok just taking the wait and see route for now. I understand *most* kids recover by the 6 month window, though the majority even sooner. This website has opened my eyes to just how many there are that have this chronically. I've had a feeling from the beginning that this will be us :(

Thank you for your words!

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9 years 8 months ago #44543 by Ann
Replied by Ann on topic It's been 3 months and no change ...
Hi, in fact there aren't that many children who go on to have chronic ITP. It is said to be 20%. With adults it's said to be the opposite, 20% acute and 80% chronic. So please don't worry. Also the younger the child the more likely it is to be acute and go away. It tends to be the worst cases that stay around here while the others all disappear and there are pleny of those.

Neither IVIG nor anti-D (WinRho) worked for me. They now think that there are basically two types of ITP and they respond to different treatments so the fact that some treatments don't work with your daughter is perfectly normal. They won't be keen to use steroids because they stunt growth in children so they only use them when they absolutely have to.

Your doctor sounds as if they know what they are doing. I don't know where you are in the world but some countries tend to treat children far more often than others and yet there's no different in the outcome. So enjoy the watch and wait method as it will be just as effective as treating but without the side effects.
The following user(s) said Thank You: leelynn18

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