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TOPIC: Mother of rowdy 2 year old with ITP

Mother of rowdy 2 year old with ITP 6 years 1 month ago #43675

  • Joslyn
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My son was diagnosed just two days ago. He is 2 and he is a wild child. How hard does he need to hit his head to worry about it? He hit his head last night right after coming home from the hospital. I knew it wouldn't take long. He had the IVIG and they said his count went from a 1 to an 8. It seems like different places use different numbers for platelets. Not sure yet where he needs to be number wise. I'm new to this. He has a follow up next week. I guess I need questions to ask. I've read so much on it these last couple days but I know I still have a lot to learn. So what should I be aware of and what questions should I ask the doctor?

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Mother of rowdy 2 year old with ITP 6 years 1 month ago #43676

  • Ann
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Hi, you might want to post on the Children's part of the forum for responses from other parents. But I can tell you about numbers. Some talk in plain digits and some in thousands, so 1 or 1,000 and 8 or 8,000.

As for what to ask the doctor, I'd ask whether they always treat low counts in children or whether they hold off and watch and wait if there's no bleeding. It's becoming more and more common not to treat children unless there's frank bleeding, which means blood in the urine or nose bleeds that just won't stop. This is a good thing, because the side effects of the treatments are generally worse than the disease.

Good luck.

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Mother of rowdy 2 year old with ITP 6 years 1 month ago #43677

  • 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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Thread moved. :)
The following user(s) said Thank You: Joslyn

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Mother of rowdy 2 year old with ITP 6 years 1 month ago #43678

  • Joslyn
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Thanks. New to this obviously.

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Mother of rowdy 2 year old with ITP 6 years 1 month ago #43682

  • 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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Joslyn:

A normal platelet count is between 150-450, although usually counts over 50 are considered safe for most things. IVIG can take a day or so to work and the numbers might rise quickly, but they usually drop right back down within days or a week or two. It's a very temporary treatment. ITP can sometimes be acute and go away within a few months or it can last for years. Most children are acute and remissions happen all the time. Sometimes doctors don't tell parents these things and they are shocked when they find out.

As for the numbers, Ann had it right and you might also see 8k which is the same as 8 or 8,000. That would be 8,000 per ml of blood, not a total of 8,000 platelets in the entire body. It's amazing how many people think that! One woman here a long time ago had a count of 1 and was upset that they sucked her last platelet out when they did the blood draw.

I'd ask the doctors about hitting his head. It's hard to gauge just how hard 'hard' is, but if there is any bruising, bumps, loss of consciousness or vomiting, that is an ER visit for sure.

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Mother of rowdy 2 year old with ITP 6 years 1 month ago #43685

  • Joslyn
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He threw up last night but they said that could happen due to the IVIG. He gets a lump anywhere he hits, whether it's his arm or head. I called the doctor, but he said since he is not bleeding or did not lose consciousness he should be fine. He does have a very hard head. He's been fine all day today. Ate a good lunch and no throwing up and been his usual active self. If hitting his head did do something how will I know? I'm thinking of buying a leash, lol. It's hard keeping up with him. I always said he never learned to walk, he ran at eight months old!

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Mother of rowdy 2 year old with ITP 6 years 1 month ago #43689

  • 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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If he hits his head and something is wrong, he would show signs of a stroke (drooping face and arms, loss of speech, etc), loss of consciousness, vomiting, won't wake up, groggy, etc. You'd know because his behavior would be off. If he hits his head in the evening, it's best to get it checked out before he goes to sleep.

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Mother of rowdy 2 year old with ITP 5 years 11 months ago #45062

  • cdavis1
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Joslyn, I would like to hear how things are. I am the Gma of a two year old and we are new to this also. Little man was diagnosed in July. It has been a long 4 months with weekly trips to the hospital. He usually has to stay the night every other week. As the IVIG drip is done while he is sleeping. It has been very hard on my daughter and her husband, but they have gotten a routine down. His count drops so quickly sometimes it is really disturbing. We too go crazy with how wild he is. He goes 100 miles an hour and runs into everything!! Poor kids looks like he has been beaten sometimes. I would like to know how your and your little one are doing?

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Mother of rowdy 2 year old with ITP 5 years 11 months ago #45067

  • Joslyn
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So sorry to hear about your grandson. My son is doing much better. The IVIG didn't work too well. His count started below 1,000 and at the peak it only went up to 8,000. They were expecting it to be much higher. I had been getting his blood checked every week until recently it went to two weeks and now every month because he is getting better on his own. His count is now 175,000! So they think he is recovering on his own and after next month if it rises over 200,000 he doesn't need to get his blood drawn unless I feel the need. Good luck with your grandson. I hope he gets better!

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Mother of rowdy 2 year old with ITP 5 years 11 months ago #45070

  • 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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Joslyn - that is great! Your story is such a positive one that could help many who feel hopeless. Children can and do recover from this.

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