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TOPIC: Heart Transplant Child with ITP

Heart Transplant Child with ITP 7 years 10 months ago #19745

  • Christine/AdriAnne
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My 12 yr old daughter is 10yrs post heart tx. Recently diagnosed w ITP. IVIg Was not effective. Her plt count is 10. Hematologist started prednisone today reluctantly.
Should we consult an immunologist? Hematologist did not check for plt modification or check bone marrow.
What can I do to help my daughter? Where should we go?Who should we see?
HELP!

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Heart Transplant Child with ITP 7 years 10 months ago #19746

  • 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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Christine:

Hello. Nice to meet you. My first piece of advice - breathe.

ITP patients are treated by hematologists and that is perfectly normal and correct. They know what to do (if they are familiar with ITP), so you are seeing the right specialist. We've had discussions about immunologists many times and I can honestly tell you that no one on this board, ever, has gotten any further ahead having seen one. I've been here nearly every single day since 1998 (hate admitting that!) and I have seen everything.

A bone marrow biopsy is not necessary to diagnose ITP. Some doctors like to do one if they have any reason to think the low platelets might be something other than ITP or if they like to err on the side of caution. But it is not protocol and most of the time, just checking the CBC and examining the child is enough.

Tell us more about the situation. What are your daughter's counts? Has she had any other treatment (besides IVIG)? What are her symptoms? What is her name?

The first step is usually an appointment with a hematologist, so you already have done what you can to help your daughter, gone to the right place and are seeing the right person. The next step is to wait and see if Prednisone helps. A good bit of the time it does.

Some important things to know about ITP:

It is not considered to be a fatal disorder.
Low counts do not equal a medical emergency.
Many children have acute ITP which resolves within 6 to 12 months.
ITP is usually managed well, although it can take some time to find the right treatment.
Having patience is important because this can not be solved overnight.
There is no cure for ITP, but there are remissions.

Everything will be okay. Read as much as you can and learn. There are some really bad web sites out there, so make sure you read credible ones. We can point you in the right direction. You can be a part of the team as far as decisions if you are well armed with information. We are all here anytime you need us with lots of wisdom and experience.
The following user(s) said Thank You: kym

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Re: Heart Transplant Child with ITP 7 years 10 months ago #19755

  • Christine/AdriAnne
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Wow! What quick response!
Your words will help me get through the day. Especially the part about not being a fatal disease. (except for my extreme concern w posibility if internal bleeding)

AdriAnne (emphasise the Anne & you get it right) is 12. 10 years post heart tx. Normally runs a 1A non concerning low grade of rejetion which is not necessary to treat. Normally very healthy. You'd never know she has hrt tx. She's in 6th grade, maintains all As & Bs.

Nov 2010 her bld began clotting in tubes no matter what anticoagulant. The Diff showed
perhaps sufficient plts but clumping.
then onset menorrhagia. Heavy enoug period w hgb of 4.8 to require 2.5 units of irradicated blood transfusion.
treated that w hig doses of progesterone until I said, "wait a minute. This isn't regulating her, she is still all over the place. Lets see hematologist."

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Re: Heart Transplant Child with ITP 7 years 10 months ago #19756

  • Christine/AdriAnne
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Discovered Platelets run around 10. IVIG ineffective late response to 1st brougt her up to 71, gave 2nd dose one week later. 1 wk after that we were back @ 10. So now she is on prednisone 50mg bid for one week. Recheck CBC friday, may reduce prednisone to 25mg once /day every other day.

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Re: Heart Transplant Child with ITP 7 years 10 months ago #19760

  • 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 know the side effects of Prednisone sound scary, but if she is responsive, try not to be in a huge hurry to get her off of it. That can result in a platelet crash for some people.

Many of us have taken Provera to stop periods while counts were down. That might be something to consider later if it becomes a problem.

Try not to worry about internal bleeding. It is very, very rare. Does she bruise a lot or have much petechiae?

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Re: Heart Transplant Child with ITP 7 years 10 months ago #19780

  • Christine/AdriAnne
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I was incorrect on prednisone dose. It is 50mg once per day, see what count is friday & go from there.
She will stay on 10mg provera (or more) to avoid having a period. Once plts are p to 40K she will receive depo lpron injection. Far and
I was so strong and full of faith during the whole ordeal of repair attempts to her original heart, septic shock, 8 surgeries in a 16 month period, 2 of only which were suprasternal, 6x on heart lung bypass. Over 360 nights @ Ronald McDonald House...
This mysterious confusion of her immune system has reslly hit me hard.
It feels like such a dead end journey.
I'm grateful for how easy living w a hesrt transplant has been

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Re: Heart Transplant Child with ITP 7 years 10 months ago #19781

  • Christine/AdriAnne
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(cont'd) this far for 10 yrs. The time has gone so fast, I wish I could have them all over again!
Our transplant np has never dealt w a heart tx patient who has developed ITP and our Hematologist only has read about 2 other cases that mirror ours having ITP w heart tx.
If anyone knows of a doctor that has been successful treating this, please let me know. Although I trust our hematologist and like working with her, I am interested in obtaining a second opinion.

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Re: Heart Transplant Child with ITP 7 years 10 months ago #19790

  • 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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Christine - ITP is not a dead end. In time, you will see just how many children end up in remission and lead perfectly normal lives. Most doctos are successful in treating ITP and they are doing exactly what your current doctor is doing. It can take time to get to a point where you are comfortable with the counts and treatments.

What do you consider 'successful'?

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Re: Heart Transplant Child with ITP 7 years 10 months ago #19800

  • lili
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Hi Christine,

I don't have much time to post these days, but there was another mom who had a son who had ITP and a heart transplant. She went by the username Angelalogin. You can find her posts by clicking on the search tab and then entering that username in the User Name field.

Anyhow, it looks like her son eventually had a remission from ITP, which is very hopeful. You might even be able to send her an email through the site.

Hope this helps,

Lily

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Re: Heart Transplant Child with ITP 7 years 10 months ago #19824

  • Christine/AdriAnne
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good news. (although she fluctuates anyway..) plts went from 12 to 22 after prednisone! What a walk... Iwe had increase w IVIG but didn't prove good for 2nd dose... This good result to prednisone could be fluke too... Lets PRAY it is because of prednisone, as I hope not to have to use higher dose of prednisone or bigger guns..

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Re: Heart Transplant Child with ITP 7 years 9 months ago #20026

  • Megan
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I think Sandi's first post should be distributed to all parents of newly diagnosed kids regardless of their other medical issues. Thank you for that. This board is wonderful in bringing the wisdom of experience with ITP. My daughter has been on this journey for only 2 months and I have learned much from this board. It is a roller coaster for sure, hang in there!

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Re: Heart Transplant Child with ITP 4 years 4 months ago #48688

  • nana
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Christine
I am grandmother to a boy now 17 who had a transplant at age two. He was recently dx'd with ITP and like you doctors are at a loss. After IVIG treatments and steroids his count still at 6. They want to start him on Rituxin. I hate to put him through it. He is either severely Autistic or brain damaged from transplant and can't really tell you how he feels. Worry about his kidneys. Any advice? I hope things are better for yout daughter.

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Re: Heart Transplant Child with ITP 4 years 3 months ago #48702

  • 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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Rituxan is a heavy duty treatment but is successful for many and is usually well-tolerated as far as side effects go. Most do just fine. If his doctors feel that his organs can handle Rituxan, he probably can. You can either trust the doctors or not, and there is always the option of a second opinion. I know treatment decisions are tough, hang in there.

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Re: Heart Transplant Child with ITP 4 years 3 months ago #48705

  • nana
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The doctor decided to hold on Rituxin and he had one more IVIG and Prednisone today and will go on daily doses of Prednisone by mouth. Will hold till we see if this works. Thanks for all the great posts.

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