Biggest health concerns

[Rebecca2315]

Hi,

I'm carrying out some research for a work project (I work with a leading healthcare provider) and was wondering, what are the biggest health worries you have about your children?

Thanks
Becky

My dd (8) is under genetic testing for Periodic fever syndrome. It's been 4 years of
Misdiagnosis, various treatment (all of which have failed including surgery) and a lack of knowledge. She is finally under one of the leading experts in the UK, but it is still very slow progress. Our biggest fear is what is happening to her body that we can't see. She flares every two weeks and is losing weight rapidly, but because of the lack of knowledge at our local health facilities we tend to have to manage on our own, a call to her rhuemy nurse still takes 48hrs to return. I am so very grateful for the nhs but the pace at which this diagnosis and ongoing treatment occurs is so frustrating.