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Hi all, this really is a long shot but does anyone have any personal knowledge of this condition? As some will know dd ,age 8, has been poorly for a while now. After excluding a tumour (Thank God) with a CT scan, and treating her for migraine with beta - blockers, there's now the suggestion of a dreaded lumbar puncture to check for this condition (the CT wouldn't show it apparently)
I've done various web searches, but I just wondered if anyone had a clue about this? Very many thanks and I promise that when I can get over all this medical stuff going on at home - I'll get back to contributing properly to Mumsnet conversations...
Mabs - not sure if it is relevant but my son was born with craniosynostis (fontanelles fused) ..... he was treated surgically at Great Ormond Street ... anyway, I received a lot of advice & help from a support group Headlines who may know something about the condition you refer to or may know where to point you
Wouldnt an MRI show it mabs?
The British medical Journal website has a great search facitity, bmj.com, and a link to medline which allows you to search basically all decent medical journals in the world.
This link gives a good summary of BIH Mabs
just to finally update ... We went to London and saw a fab consultant on Thursday. He was VERY reassuring and said that dd is 'fine' and took her off all the beta blockers etc. said they were making the headaches worse. After doing a very thorough examination , he said there is no need for a lumbar puncture at all. He says it is 'only' headaches and she'll grow out of it. It was totally worth the money and I would thoroughly recommended this doc.
MABS - great news. and if you decide to pursue the 'headache' route, I'd heartily recommend
Anne McGregor, who's an expert on migraine from the City of London Migraine Clinic - a medical charity run in conjunction with St Bartholemew's Hospital in London. dunno whether she does paediatric work at all, but she's written some very straightforward & approachable books on headaches & is a good communicator.