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Will this end?!? Frustrated!

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7 years 10 months ago - 7 years 10 months ago #55504 by Amandabphillips
Will this end?!? Frustrated! was created by Amandabphillips
Hi everyone,
I'm a parent of a 2.5 yr old with ITP. He was diagnosed at 1.5 , we are nearing one year of living with ITP. In that year we have done IVIG 3 times and just faded off steroids. I FEEL EXHAUSTED. I'm exhausted with the constant fluctuation of numbers, the constant checking for bruises the worry that I'm not doing everything I can do for my son and the list goes on and on.
We just faded off steroids a week ago and tonight when I put him to bed I noticed that he has started to bruise again and I just feel so discouraged.
I'm just wondering if anyone has any hopeful words or any advice on how to be ok with The ITP struggle. We have jumped so quickly to treatments just when his numbers are low (not necessarily when he's had bleeding) just because as a parent I feel like I need to do everything I can to keep him safe and I have such a hard time with the watch and wait approach!!
I'm so glad I found this board and love reading everyone's stories! Would love any encouraging words!
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7 years 10 months ago #55505 by Rob16
Replied by Rob16 on topic Will this end?!? Frustrated!
Hi Amanda,

I do not have a child with ITP (my wife has ITP), but I am a father of three, stepfather of three, and grandfather of three, and I have learned over the years how worrying saps the life out of you while accomplishing very little. People sometimes comment about how well I take things in stride, but it was not always like that. It is something I have learned over the years, and it requires intentionally working on it. I don't know any shortcuts.

I hope some parents of children with ITP will check in soon, but until then, I do want to reassure you about one aspect of the "watchful waiting" approach. The reason it is recommended is that all treatments have risks and side effects, and as a result, NOT treating a child who does not have significant bleeding (other than bruising and petechiae) is actually safer than treating.
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7 years 10 months ago #55530 by alisonp
Replied by alisonp on topic Will this end?!? Frustrated!
Hi

I hesitate to call myself the parent of a child with ITP because he's 18 next week - I suppose I just about am still!

The thing to remember about ITP is that numbers really don't count much, but symptoms do. And even then, only some symptoms count - things like blood in the urine, nosebleeds, blood blisters in the mouth or on the tongue. Bruises and petechiae don't really count much. Bleeding symnptoms matter because they indicate that your child has the potential be bleeding somewhere else that you can't see. But a lot of kids, probably most kids manage just fine on very low counts without having severe bleeding symptoms - when my sons count was one, the bruises looked terrible but he was fine.

And thats why Drs advocate watching and waiting - in Europe this is the most common (non) treatment. It is difficult, especially if you have been scared stiff by the hospital or by the Facebook pages (I think people tend to panic lots on them) but its by far the best approach for your child if they don't need treatment for bleeding. All treatments have potential side effects and risks, and they tend to lose their efficacy over time, so you want to save them for when and if they are needed. I've read a few studies that indicate that more ITP patients actually die from the side effects of treatment than from the condition itself.

You could put in place a few lifestyle changes that might make you feel safer about the situation - putting bump guards on furniture, maybe a soft helmet? And make sure you take your son to get checked out if you are ever worried about a symptom.

Things do get better. After 7 years of counts under 20, my son seems to be fluctuating between 20 and 60 nowadays and that sort of count causes him no bother at all unless he needs medical treatment for other things. I honestly don't think he even thinks about ITP from month to month. And during the majority of the time his counts were low, he had a normal life - he went to school, scouts, adventure camps. played soccer, rode his bike........ Nothing bad happened due to ITP although he did have a fair few normal childhood accidents :)

I hope your son starts to improve soon and that you find an easier way to live with the diagnosis - when all else fails, I try to remind myself that worrying never achieved ANYTHING!

Ali
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7 years 10 months ago #55550 by Amandabphillips
Replied by Amandabphillips on topic Will this end?!? Frustrated!
Thanks for the responses!
It's so nice to hear encouraging words. I think the reason I worry so much is because I think "am I doing everything I should be doing as a parent"? Just the fact that I want to do everything I can to keep my son safe eats away at me which is why I think we've leaned so much towards treatments. I'll try to exercise patience with ITP, it's just so hard!!

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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 9 months ago #55583 by Sandi
Replied by Sandi on topic Will this end?!? Frustrated!
Keep in mind that ITP can end at any time. Even if there is a chronic label, that doesn't mean anything more than the fact that ITP has been present for a year. It does not mean it will be life-long. I have seen many chronic ITP patients go into very long remissions, and it could even be forever.

In the meantime, take one day at a time and try not to stress. I'm sure you are doing everything you possibly can.
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