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About Me
f8ythsmom
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About Me
I am the mother of a boy (7) with JIA polyarticular, asthma and migranes and of a daughter (5)with von Willebrands Disease ( a bleeding disorder), & awaiting the results of her Crohn's biopsy. I like to advocate for children with Arthritis and Bleeding Disorders. I am a stay at home mom who's time is spent among various doctors appointments.
I am the mother of a boy (7) with JIA polyarticular, asthma and migranes and of a daughter (5)with von Willebrands Disease ( a bleeding disorder), & awaiting the results of her Crohn's biopsy. I like to advocate for children with Arthritis and Bleeding Disorders. I am a stay at home mom who's time is spent among various doctors appointments.
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Interests
reading, cooking, shopping
reading, cooking, shopping
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Support Groups
Close Hemophilia
My daughter (5) actually has von Willebrands disease. She was dx'd last spring, but since she was about 5 months old I would take her to her regular doc becuase of bruising. I was told she had hypersensitive skin. We came to find out about this becuase she had to have surgery and her labs came back abnormal and they wouldn't perform her surgery till she was cleared by a hematologist.
Treatments
- Desmopressin Working / Worked
- My daughter responds beautifully to the DDAVP.
Close Arthritis - Juvenile
My son is soon to be 7 and we were dx back in Aug 08. Originally he was dx with oligoarticular but has since been redx'd w/polyarticular We are in the process of learning which meds work and dont. He is currently on sulfasalazine, because on top of the JIA he also has asthma and migranes. So I am in the process over the last several months to learn as much as I can and become his best advocate.
Treatments
- Naproxen Not Working
- currently still on becuase we have to build up the dose of sulfasalzine over several months and need something else till it finally starts to show effects
