Sorry (weird one) Benign Intracranial hypertension

[MABS]

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

wwwheadlines.org.uk

HTH

Many thanks Lindy - i'll contact them.

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
www.asbah.org/bih.html

Mabs have you looked here , they were very good with us when dd2 was diagnosed with hydrocephalus, even sent someone to visit. Maybe you could call them? Hth.

oops sorry just realised cos had already posted it!

Also meant dd1 not 2, lost my brain today!

Also mabs if she has BIH, there are more modern proceedures than shunting available in specialist centres, I can check your nearest if it comes to it.

Thanks for all of this, the website suggested are really good. Apparently they need to diagnose with a lumbar puncture - anyone's children had them? makes me feel sick to be honest.

I got really angry today , feel like i'm banging my head against a brick wall. Decided to see London specialist, have an appointment next Thursday for dd , we'll see how it goes.....

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 - so pleased to read your good news, hope your DD is feeling a lot better now.

Wonderful news Mabs

MABS, that is GREAT news! I'm really pleased for you all!

What a relief for you Mabs, great news!

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.

thanks Bundle - i'll try and get hold of one of her books I think.

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MABS, so pleased for you and your dd, great news!

gret news, MABS!