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TOPIC: Grandma with some questions

Grandma with some questions 6 years 3 weeks ago #44264

  • cdavis1
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Our Grandson was diagnosed with ITP in July. It came out of nowhere. He just suddenly had lots and lots of bruises. He is 2. He has now been in the hospital for a total of five visits. All of which have been for 2 nights. His count has been as low as 3000. He seems to do well for two weeks after his visits. I don't know all the technical names of the drugs but what has been tried so far is a 12 hr IV drip, followed by a waiting period of a few hours and then another IV drip. This seems to get the numbers up but for only the 2 weeks. The kids have him seeing a hematologist. It is just so frustrating that this won't go away. He is a big boy and very active. The 12hr drips have been so hard on everyone because he can't go far from his bed. I guess I just want to know that this will indeed go away....it is very scary!!

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Grandma with some questions 6 years 3 weeks ago #44266

  • juliannesmom
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Sorry you find yourself in such a worrisome situation. I can't tell you it will go away, but I can tell you that younger children are more likely to be acute cases which remit and never return. At older ages, for some reason, males seem less likely to be chronic cases. So, there is hope. Meanwhile, I am assuming that, by now, if his parents have not already done this, they may find that hospitalization is a bit less stressful if they plan ahead by keeping a bag packed in the car with a couple days of toiletries, slippers, comfy clothes and pajamas for a parent and child, with a favorite pillow and blanket, and some diversions like books and games. I did this before our first hospitalization, as a doctor friend warned me it was likely coming. At least we were ready when we learned we had to go straight to the hospital.
Norma

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Grandma with some questions 6 years 3 weeks ago #44271

  • 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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It sounds as if he is getting IVIG treatments. IVIG can be a good rescue treatment, but is usually a very temporary solution and rarely lasts more than a week or so. There are some other treatments they could try that do no involve hospitalization (such as steroids). Many times, children are not treated and they use the 'watch and wait' method. That is becoming more popular as time goes on.

ITP is usually acute in children, but it can take time to go away. Was he ill just before diagnosis? ITP can occur after a viral or bacterial infection.

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Grandma with some questions 5 years 11 months ago #45063

  • cdavis1
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Sorry, I didn't get back to you sooner. Yes he had a cold, his first one really, he had been such a healthy baby. Before the started the IVIG they did do three rounds of steroids. Those did not seem to help much at all. He actually had a little reaction and had a very high fever. That was a 3 night stay. But now he is getting a shot, my daughter calls it N plate? He is getting a dosage of "5" They don't want to go up to a 10. He started with a dosage of "3". We are averaging 2 weeks now between hospital stays and he goes in every Monday for his shot. We are praying this will just go away!! You are very knowledgeable, thank you

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Grandma with some questions 5 years 11 months ago #45064

  • cdavis1
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Sorry I took so long to respond. That's funny that you mention the bag for the hospital. The kids have mult. bags ready to go including an air mattress for themselves. Poor baby has actually gotten used to staying at the hospital and has become friends with all the nurses. We are really praying this will go away soon!

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