The Atypical HUS Foundation

Hi 

I wonder if anyone can help me. My 5 year old daughter has been diagnosed with atypical hus inJanuary. It was a disease that we know nothing about. She is now on 3 weekly infusions of eculizumab but keeps having bouts of high temperatures and tonsilitis. I'm not sure if this is due to the change of weather or is part of the atypical hus....any thoughts?

Also is there a forum where you can talk to other parents of children that have this disease? 

Many thanks 

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Hi Becky,

I'm sorry to hear that your daughter is having these issues, and can understand your concern.  Since she's on eculizumab, you've probably already contacted your nurse/casemanager as well as your medical team about this.  While I can't offer any medical advice, I'd like to share our experience,

My son went to preschool and kindergarten, which was great for education and social skills but also meant exposure to a wide bacterial and viral load.  With fall, closed classroom windows and more inside time meant all those adorable little hands were on all craft and learning materials - so my son was exposed to normal childhood illnesses along the way.

Everyone is different, and no cases of aHUS seem quite alike, so it's probably wise to keep going back to your daughter's medical team to check things out.  In our case, we worked with teachers to limit some types of exposure which helped - things like a 'craft caddy' with his own glue, scissors, and such rather than shared class materials.  Hope she's feeling better soon.

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