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TOPIC: Treatment after the 1 year mark

Treatment after the 1 year mark 3 years 5 months ago #58762

  • Makeeshab
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Hello! My dear 5 year old son was diagnosed exactly 1 year ago tomorrow. He had a platelet count of only 1 when diagnosed, and has remained under 10 for the past twelve months. We have had two head injuries (Scary stuff) and both times he was treated with Ivig, and live platelets and his platelet count rose to 70 on both occasions, but the count dropped to 3 in about 10 days. We have also had two lots of very high steroids, and we managed to get his count up to about 25, which wasn't as successful as the Ivig and didn't have great side affects. We have been doing the watch and wait, with the promise that once he hits 12 months post diagnosis he will be treated with more priority, with some treatment offered rather than just watching and waiting.

He is extremely fatigued, and exhausted.He has also become anaemic and has very low ferritin levels. He is struggling at school (year 1) and his teacher requests that he stays home for a day on Wednesdays because he can't keep up. He also does not participate in sports, or outdoor playgrounds. Thankfully he loves Lego and drawing! My anxiety has eased somewhat, but it is definitely hard to see your small child suffer.

I have a couple of questions that I would love some help with answers please:
1. Do your children also suffer from serious fatigue?
2. Has your child's iron levels dropped at all?
3. What has been the suggested treatment for your child once they reach 12 months?
4. What have you been told by specialists about further diagnosis with other auto immune disease?

Any of your experience, suggestions, or advice is so very much appreciated! Thanks in advance!!!

Blessings,
Makeesha & Josiah :)

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Treatment after the 1 year mark 3 years 5 months ago #58765

  • tj1989
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Our son was diagnosed as pancytopenia with all three counts low last August. He looked very tired when his hemoglobin was low. Then I looked his chart over the time, and found that his hemoglobin kept dropping after he was diagnosed, before that he was almost normal (above 11), only platelet counts low. Then I googled and found something about "hospital acquired anemia" caused by the amount of blood drawn in hospital. I asked his doctor to draw minimum amount of blood that was required and reduce the frequency (before was twice a week, and each time 3-6 tubes) when his count was not critical. His hemoglobin slowly come back and was normal for the last two visits.
Low platelet might cause fatigue, but I think anemia might also contribute to it.

We did bone marrow biopsy to rule out leukemia and did gene test to rule out inherited bone marrow problems. Because his platelet count is around 20 over the last half year, we are just monitoring his count right now, visiting doctor every month.

Does your son has any nose bleeding or other bleeding issue? Our nurse said one big nose bleeding (that last more than an hour) can easily make the hemoglobin drop to 8-9 for a little kid.

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Treatment after the 1 year mark 3 years 5 months ago #58767

  • 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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Makeesha:

I don't have a child with ITP, but I have had ITP and have been on the Forum since 1998. My answers:
1. Some children have fatigue due to ITP and some do not. I'm sure anemia would contribute to it. Are they addressing this since his ferritin is low?
2. Iron levels usually do not drop with ITP unless there is blood loss.
3. Many doctors do not wait for 12 months to treat a child. However, many doctors re also doing 'watch and wait' with no set time period. I'm not sure why 12 months is an important date for your doctor.
4. Most doctors do not look for or expect other autoimmune disorders in children. It shouldn't be an issue unless symptoms pop up or blood work shows something.

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