The Atypical HUS Foundation

Hello,

I hope I am posting this correctly.  My 10 year old daughter was diagnosed this year with aHUS.  She was released from hospital at the end of May.  She is currently taking the bi-weekly dose of Soliris and her lab work looks good.  However last week she was diagnosed with strep, even though she's on the small dosage of penicillin each day.  The strep symptoms are almost gone, but she is complaining of chronic headaches.  Is anyone else experiencing chronic headaches, and have you found anything to alleviate them?

Your input would be appreciated!

Thanks,

Mimi

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Comment by Linda Burke on July 19, 2016 at 9:12am

Hi Madeleine,

Sorry to hear this.  Ask your daughter's care team about "extra renal involvement" as aHUS can affect many other organs and not just the kidneys.

I'd encourage you to call OneSource about this to share your concern and learn more.  These nurse case managers work with patients on Soliris, and its a free service - call 1-888-SOLIRIS to ask about headaches.

Here's an older forum on the topic: http://atypicalhus.ning.com/forum/topics/ahus-complications-potenti...

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