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any ideas?

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13 years 2 months ago #30724 by melanie723
any ideas? was created by melanie723
Hi. I have a daughter (16yo) with a platelet defect. (qualitative, not quantitative)She has been diagnosed since age 5. She has prolonged bleeding time and sees a hematologist once a year. While she has had minor issues ( nose bleeds, bruising etc) there have been no major issues until recently. She is a very active teen. ( a cheerleader until about 6 months ago) Lately the smallest walk or jog will cause (what i believe to be) joint bleeds. Her hematologist has not seen this happen, but seems to think it's just very rare for joint bleeds to happen with her condition. So, I feel like I'm being brushed off. The first symptom was horrible knee pains. (which is what caused her to have to give up cheer leading.... her passion)She says she feels a warm, "fizzing" feeling before it starts. Within minutes, you can see her knees turn blood red and are very warm to the touch. She takes Stimate in nose spray form for bleeding. If she takes a dose, it will go away fairly quickly, but the pain lingers. She has been referred to an orthopedic because her knees turn in. She has an MRI that showed nothing. This has been going on for at least three years. Now,(just within a couple of months) her ankles, feet and arms are being affected. for example, walking slowly in the mall will result in not only sore and red knees, but also blood red lower legs and feet. Her feet get so incredibly red and splotchy you wouldn't believe.There is no pain in these areas, only the redness and very warm to touch. Even more recently, she's been getting red splotches on her arms. Usually during the episodes that the other parts are red. Here is a picture she just sent me. She's shopping and took a pic of her arm. This is the least of the problems, but I just happen to have a picture of it. What do you think? I know it's not exactly the same Platelet problem as most, but I cannot find anyone with this same condition. She is very active with Hematology of Georgia but even with all the people she has met through them, most have hemophilia or Von Willebrands.

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  • 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 months ago #30725 by Sandi
Replied by Sandi on topic any ideas?
I'm not so sure that is hematological. That seems to be something for which she should probably see a Rheumatologist. I would collect as many pictures as you can, and try to get an appointment. There are a few disorders that could cause that sort of thing.
The following user(s) said Thank You: melanie723

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13 years 2 months ago #30727 by melanie723
Replied by melanie723 on topic any ideas?
forgot to add.... Her diagnosis is "Storage Pool Disease"
and my son also has been diagnosed with the same, although he has never presented with any symptoms.

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  • 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 months ago #30729 by Sandi
Replied by Sandi on topic any ideas?
Well, it may be a result of that. Have you ever read that skin can turn red like that?

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13 years 2 months ago #30734 by eklein
Replied by eklein on topic any ideas?
Just a thought, vasculitis? I used to get hot red splotches on my hands from that.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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