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brianna update

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10 years 4 days ago #46214 by dawn1979
brianna update was created by dawn1979
Hi everyone
Brianna is doing ok. Counts have ranged from 0-3 since she finnish her rituxan in Oct. How does anyone not panic if there child gets really bad headaches. in the last month i have had brianna to the childrens hospital here 3 times. They hook her up to iv meds in a couple of hours she is fine again. i worry with every headache that its more then a headache. thats my vent for the day
Dawn

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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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10 years 4 days ago #46218 by Sandi
Replied by Sandi on topic brianna update
Have any of the doctors looked into causes for the headaches? If not, they should. How old is your daughter?

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10 years 3 days ago #46226 by TerriC14
Replied by TerriC14 on topic brianna update
No real advice but I can empathize, my 18yo daughters counts are low and fatigue and headaches are her biggest complaints. It is hard not to always worry.

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10 years 3 days ago #46230 by dawn1979
Replied by dawn1979 on topic brianna update
she has seen a doctor about her headaches and he has put her on meds. they worked the first few months, but now they don't seem to work at all. Then when we take her to the childrens hospital here in newfoundland they look at you like your crazy because the hemo docs are not treating her. she has no bleeding issues right now. so why would i agree to put her on meds that are more then likely not work for her.

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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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10 years 3 days ago #46238 by Sandi
Replied by Sandi on topic brianna update
Some people with ITP have Antiphospholipid Syndrome. It might not be a bad idea to discuss it with her doctor. My Hemo pooh-poohed it with me and refused to test for it. Years later I did get tested by another doctor and I did have the antibodies.

Some people who have APS may develop thrombocytopenia. This is a condition in which your blood has a lower than normal number of blood cell fragments called platelets.

Other signs and symptoms of APS include chronic (ongoing) headaches, memory loss, and heart valve problems. Some people who have APS also get a lacy-looking red rash on their wrists and knees.

www.nhlbi.nih.gov/health/health-topics/topics/aps/signs

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10 years 3 days ago #46242 by dawn1979
Replied by dawn1979 on topic brianna update
she was tested for aps in september before she had her rituxan. came back negative

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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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10 years 3 days ago #46252 by Sandi
Replied by Sandi on topic brianna update
Ok, that's good. One less thing...

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