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Sorry (weird one) Benign Intracranial hypertension

(20 Posts)
MABS Fri 28-Feb-03 08:57:09

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...

Lindy Fri 28-Feb-03 09:19:05

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

MABS Fri 28-Feb-03 09:44:50

Many thanks Lindy - i'll contact them.

cos Fri 28-Feb-03 14:26:39

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
http://www.asbah.org/bih.html

lou33 Fri 28-Feb-03 15:29:29

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.

lou33 Fri 28-Feb-03 15:29:53

oops sorry just realised cos had already posted it!

lou33 Fri 28-Feb-03 15:34:07

Also meant dd1 not 2, lost my brain today!

cos Sat 01-Mar-03 08:13:37

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.

MABS Sat 01-Mar-03 14:14:36

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.

MABS Wed 05-Mar-03 20:23:40

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.....

MABS Sun 16-Mar-03 19:11:15

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.

Lindy Sun 16-Mar-03 21:29:39

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

lou33 Mon 17-Mar-03 00:06:54

Wonderful news Mabs

Marina Mon 17-Mar-03 09:15:40

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

CAM Mon 17-Mar-03 10:17:06

What a relief for you Mabs, great news!

bundle Mon 17-Mar-03 13:26:12

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.

MABS Mon 17-Mar-03 18:18:48

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

robinw Mon 17-Mar-03 18:35:21

message withdrawn

jodee Tue 18-Mar-03 07:49:36

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

tigermoth Tue 18-Mar-03 11:23:59

gret news, MABS!

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