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TOPIC: 3 month baby, unresponsive to treatment, no platel

3 month baby, unresponsive to treatment, no platel 5 years 11 months ago #44879

  • Calouk
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Hi, I'm new here as a concerned parent. My 3 month old baby (Gab) has been diagnosed with ITP. Although because of her situation we're still ruling out other things, for example they're doing diagnostic testing of her father and I.
The bleeding started a month ago. All throughout her mouth, Petechiae all over, broken capillaries in her eye and blood noses. she so far has remained unresponsive to treatment - 1.5 x IVIG (leaked into her arm - destroyed a bunch of tissue and skin, separate unfortunate issue) and steroids. And by unresponsive she's remained at under 10,000 (<10) platelet count. I'm told it's basically been zero for this entire month. She's had only one day this whole time where there was a count of 10,000 - that was two weeks ago, it's back at zero currently.
The children's hospital in melbourne (australia) only see one case per year of a ITP patient her age - that's pretty rare. Also it's odd that she's not responding at all to the treatments. But they have taken a bone marrow aspiration - all normal, spleen - normal, liver - normal. Happy, smiling, pink, laughing baby,but no platelets. Has anyone else had this? I just feel so lost.... C

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3 month baby, unresponsive to treatment, no platel 5 years 11 months ago #44883

  • 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
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Calouk:

I'm sorry that you are going through this will such a young baby. I'm sure that is hard. Many children are unresponsive to treatments for some reason or another. There are other options, but I'm not sure what can be used on a child so young.

Most children have acute cases of ITP, so it's entirely possible that this will disappear as suddenly as it came. Most of the time that happens within 6 to 12 months. If not, remissions can occur even years after diagnosis.

It seems like the doctors are on top of things and are doing what they can. If she is happy and smiling, that is a very good thing. This is probably much harder on you than it is on her. And luckily, she won't have any memories of the blood draws and IV's. Hang in there and just take one day at a time. Hopefully, this will end soon.
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3 month baby, unresponsive to treatment, no platel 5 years 9 months ago #45748

  • Calouk
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Hi,
I'm writing again wondering if anyone else has had experience with a baby with ITP. I'm now over three months with little improvement. Now everytime she has her IVIG she gets an improvement in her levels (mid 40's), but continues to kill them all off after a few weeks, bleeding starts up again, requiring more treatment. I have no idea how she'll deal with teething (she's 5 months old now), learning to crawl, all of which are on the horizon.
If this doesn't turn off, I'm really concerned about how she'll have to learn to walk without any platelets ---
Calouk

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3 month baby, unresponsive to treatment, no platel 5 years 9 months ago #45763

  • 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
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Calouk:

Many, many times, ITP resolves as quickly as it came. All you can do at this point is take one day at a time and try not to worry. She should do okay with teething; it doesn't cause any bleeding. If she still has ITP when she is learning to walk, she will manage it and so will you. There have been children before who have done it. Some parents buy helmets for their children or pad down the edges of coffee tables. You will find ways to keep her safe and I'm sure the doctors will have some input.

As she gets older, she will also be able to use some of the other treatments that are available. She may respond better to those.

As I said, one day at a time. You'll drive yourself crazy if you think too far ahead.
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