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TOPIC: Newly diagnosed and confused

Newly diagnosed and confused 2 years 4 months ago #63396

  • MuiseFamily6
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My daughter, T, went into the hospital last week after her 3rd nosebleed in less than 32 hours. Each one lasted 1-2 hours. When she arrived in the ER, her platelets were >10 and her hemo was 7.7 with white blood cells low too. They admitted her for 3 days, did IVIG, switched her seizure medication, took blood for genetic testing (Ordered by the neurologist because of her combination of seizures and developmental delays. She ordered it for while we were still in the hospital so that it wouldn't be a fight for insurance to cover it), and tested for several genetic conditions that could cause ITP and other autoimmune disorders, as my husband has 2 autoimmune disorders including Hemolytic Anemia. After all that, we still don't know what caused T to have this ITP reaction. They assumed it could be from the allergic reaction she had just 2 days before the nosebleeds started (she was bit by something and ended up with full body hives) or her seizure medication but even the neurologist said that the medication she was on wouldn't cause a reaction as bad as her's. Has anyone else had their child be diagnosed with ITP with no idea what lead up to it?

The good thing is that her platelet levels were at 110 when she left but her hemo was only 7.3 (dropped down to 6.4 after the IVIG) and her white blood cells were still low but up from when she came in.

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Newly diagnosed and confused 2 years 4 months ago #63398

  • 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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Anything can trigger ITP. I wouldn't exactly call it a reaction. It's possible that the bite she had triggered the autoimmune response that caused both the hives and the ITP. It's also possible that her counts had been falling slowly for a while and you just didn't know it until she began to have symptoms. That happens, and unless she's had recent blood work, there is no way to know for sure. Since your daughter has a genetic predisposition toward autoimmune disorders, anything could have set this off. The most common triggers are illnesses, medications and vaccines, but for some people, it just appeared out of the blue.

IVIG is most often only a temporary fix that lasts a few days or weeks, so be prepared for that. It's good that your daughter responds to treatment. Please keep us updated.

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