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New here :) Mom of ITP 8 years 2 days ago #45217

  • BostonMom
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Hi,

I just found this site and wanted to introduce myself. My daughter was diagnosed with ITP back in April of this year. We found out when she started her period for the first time and it lasted 23 days!
Started with the steroids which had no effect, have done a few rounds of IVIG which do help boost her numbers for about a week or so, then right back down, which I'm sure you're all used to.
She started mercaptopurine a couple months ago. Haven't had great results. She's pretty much staying right around 20-30. They're giving the mercaptopurine one more month, then we'll try other things.
I'm confident she's in good hands. She goes to Boston Children's which is one of the best hospitals in the country so that makes me feel a little better. I absolutely love her hematology team & her gynecology team. They're all amazing!
My daughter is only 12 so this had been pretty hard for her. She has missed a lot of school due to appointments, hospital stays, etc. The hardest part for her is not being able to participate in gym, etc. She's also getting sick of taking pills! She's on the mercaptopurine as I mentioned as well as two birth control pills to keep her period away and she's anemic so she takes iron.
Just wanted to pop in and say hi! This is a scary disorder and I'm glad I found you guys. It's not something that is really well known so it's hard to find people to talk to about it.

Have a great day!! :)
( I posted this in the wrong section at first....I'll learn!! :) )

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New here :) Mom of ITP 8 years 2 days ago #45218

  • 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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Hi. Sorry you're here, but I hope you stick around. The support and knowledge you will gain can be very helpful!

6 MP is an odd choice of drug to start with, but I guess it's as good as any. It's not used very often for ITP because the results are not usually that great. A count of 20 to 30 is a safe count, although your daughter will probably have to stay away from most sports. ITP can be hard to get used to, but in time it doesn't seem as scary.

Here is an interesting discussion between two women with teenage daughters:

pdsa.org/forum-sp-534/6-general-itp-discussion/28428-labwork-and-questions.html

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New here :) Mom of ITP 8 years 10 hours ago #45249

  • TerriC14
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Hi! Welcome!

I am sorry to hear of your daughters diagnosis an symptoms. I think 12 is a tough time for kids in general, adding on having to deal with health issues certainly is challenging. Not being able to participate in activites and missing school is hard.

My daughter was diagnosed about 18 months ago at 16 with ITP. Even though her platelet count is low we are fortunate that her symptoms seem relatively mild.

I am glad that you are happy with your medical team. That is so important!

I hope she sees some results from her treament soon.

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New here :) Mom of ITP 7 years 11 months ago #45271

  • BostonMom
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Thank you for the welcome =)

I didn't realize 6MP wasn't the usual next step. They're trying to go with the least invasive ideas, first. They're giving the 6MP one more month, then we'll be doing ( Forgive me, I forget what it's called) when you go once a week for 4 weeks to get some kind of injection.

If that doesn't work, they'll do a bone marrow.

While 20-30 is still fairly low, I do feel a lot better than when it was 1. That was the lowest it had been. One of her periods was so bad she had lost about 80% of her blood. Obviously she was admitted & had blood transfusions to replace all the blood lost. Now she is on 2 types of birth control to keep her period away.

We were hopeful this would just go away on it's own as it sometimes does but it's not looking that way. I do feel some comfort in knowing the IVIG is always there to boost her numbers up to a somewhat safe range. Usually they'll boost up to 50 or so and lasts roughly a week but it's better than being at 1. Her doctors do tell me to try to not worry so much about the numbers and to focus more on the symptoms. She rarely has any so that is great. Slight petechiae here and there occasionally but no bleeding so that is awesome.

Anyway, thank you again for the welcome! I look forward to talking to you all and learning a lot!

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New here :) Mom of ITP 7 years 11 months ago #45276

  • 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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I think you may be talking about Rituxan, but that is an infusion once a week for four weeks, not an injection.

All treatments are just that, treatments...they are not cures. ITP can go away on it's own at any time, with or without treatments. Some kids remit months or years after diagnosis. Never lose that hope, it happens all the time.

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New here :) Mom of ITP 7 years 11 months ago #45372

  • BostonMom
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Thank you, I know & I am hopeful!

Unfortunately, she started bleeding last week. Only lasted a day and a half & wasn't super heavy. Started bleeding again yesterday. We're going to the lab this afternoon to get her numbers checked. We'll see. Should be finishing the 6MP next week, then on to the next step.

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New here :) Mom of ITP 7 years 11 months ago #45374

  • Lori1220
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Hi BostonMom. My daughter was also diagnosed right at the time she started her period, right before she turned 13. She had issues for months. Went through 3 different brands of birth control pills. She bled through all of them. Finally had to go to Depoprovera which has worked well although, she has to get them every 9-10 weeks instead of the usual 12 weeks due to breakthru bleeding. Her counts have always been in the single digits. We really only treat due to bleeding issues and/or severe fatigue. She does respond to IVIG for rescue but only lasts couple of weeks. Rituxin and steroid have not helped. She is 16 now. She is currently in a pediatric drug study for Nplate... it has been a wonder drug for her. She has had platelet counts greater than 100K for 2 months and she no longer complains about severe fatigue.

Good Luck!!!

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