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Children with itp and lupus

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13 years 3 weeks ago #27921 by bell1138
Children with itp and lupus was created by bell1138
Does anyone have a child was itp or chronic itp and the doctor has talked about lupus. Do children with chronic itp go on to develop lupus? I am so worried my daughters platelets had gone up on their own and the doctor said it was just an acute case of itp and he dc her file. Now one month later we are back? My husbands father had luous and I'm so worried. Have any of your child's doctors discussed this with any of you struggling with a child with itp.
  • 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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13 years 3 weeks ago #27922 by Sandi
Replied by Sandi on topic Children with itp and lupus
Bell:

There are not too many parents here with children that have both ITP and Lupus. A few of the children have Lupus symptoms but haven't been diagnosed yet. That can take some time since symptoms can show up before blood work shows anything specific.

No, most children with ITP do not go on to a Lupus diagnosis. A very small percentage do.

Her doctor may have been a bit hasty diagnosing acute ITP. You can't know that it's acute after only a month. Why would you think she may someday have Lupus?
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13 years 2 weeks ago #27946 by bell1138
Replied by bell1138 on topic Children with itp and lupus
Sandi, it's not that I think that my daughter will get lupus. I just worried because the hemotologist told us that there is a link with children with chronic itp and lupus. That really scared me. My daughter has had itp for four months. Twice her platelets went up on their own. He did not say my daughter has chronic itp, the doctor said she had reoccurent itp. He explained thy chronic itp would be if she were to struggle with her platelet count for over 6 months but since she had bounced back twice on her won he said its reoccurent. I just got really scared when I heard lupus. My husbands father had lupus and he died 6 years ago. It has been very hard on my husband and his whole family. I worry why this is happening to her and I worry because I don't want this to be anything more than itp.
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13 years 2 weeks ago #27954 by Ann
Replied by Ann on topic Children with itp and lupus
Bell, ITP is an autoimmune disorder and lupus is an autoimmune disorder, and it is common for several members of a family to share the tendency to have autoimmune disorders. It is not uncommon to find that other members might have an autoimmune thyroid disorder, or diabetes type 1 which is also autoimmune. But it doesn't mean that everyone gets everything.

Your doctor has scared you unnecessarily. Chronic ITP isn't really diagnosed until after a year nowadays. And even after that many children recover spontaneously. Your daughter sounds as though she is recovering but has had a set back with a virus. That is normal and likely as not when the virus has gone she will recover again and eventually she will recover for good.
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13 years 2 weeks ago #27984 by bell1138
Replied by bell1138 on topic Children with itp and lupus
Ann, thank you so much. You don't know how much better you made me feel . I guess I get paranoid since my husbands father had lupus and now my daughter has itp. After reading your post I felt much better. I will keep everyone posted on her progress. I really hope this goes away very soon. Thanks again...
  • 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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13 years 2 weeks ago #27992 by Sandi
Replied by Sandi on topic Children with itp and lupus
There is no reason to think that your daughter will ever have Lupus. ITP an be a symptom of Lupus that can show up years before Lupus does, but I wouldn't say it's common. I do think your doctor jumped the gun a bit. Just be alert to symptoms and be aware that there is a small possibility, but I wouldn't spend any time worrying about it.

It doesn't matter what the ITP classification is...acute, chronic, or re-occurring; it can still go away at any time.
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