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Hi everyone

Just in to give an update. The baby has been in Dublin a couple of times since and they now think he has West syndrome. I read a tiny bit about this but stopped until we are 100% sure it is that as the reading was very upsetting.

They are putting him on steriods now for a month and then taking him back to Dublin again.

Thanks for all your support. I will search here to see if there are any West syndrome threads.

Catherine
 
There is

also a couple of really good groups that can help you with West syndrome. One is one that DutchMom works with a lot, I BELIEVE the URL is www.matthewsfriends.org. I hope that's right. You might want to send her a PM and ask.

Also, there is a group called RareEpilepsyGroups@yahoo.com that might also be able to help you, too.

Seriously, though, PM Dutch Mom. She's got some REALLY GOOD resources regarding young kids because of her young one.

I wish you nothing but the very best of luck, Catherine.

((((HUGS))))

Meetz
:rock:
 
Hello Catherine,

I've just answered you PM and will post part of my reply here on this thread (as it might be usefull to other West (grand)parents later oin.)

I'm so sorry your grandchild seems to have West syndrome. It's a difficult diagnosis to cope with. As well the difficulty to get the seizure control as the developmental delay and the disturbed contact these children have.
I do know many kids with West syndrome and their parents, some of them are very close friends, most Dutch kids and a few Brittish children. On our Dutch parental support group www.sos-mies.nl (in Dutch) I've seen hundreds of moms and dads and even grandpartents who have kids with West in the past 7 years. West is one of the most 'common' epilepsy syndromes in our group.

My son didn't have West. He has the Lennox Gastaut syndrome (which is even worse than West :sad: ) as a result of braindamage. Look for Lennox Gastaut with Google and you'll see what I mean. But there is a connection between West and Lennox Gastaut. About 30% of kids with symptomatic West syndrome develop Lennox Gastaut syndrome as they get older. I do hope this won't be the future for your grandchild. Lennox Gastaut means intractable, severe epilepsy and irreversable mental retardation.

To read more about West from other (grand)parents I want to recommend you to sign up for the members forum here http://infantilespasms.com/forum/
It's a very active forum with a lot of usefull information and experiences and good interaction between members who have kids with West syndrome (in English) and the forum is hosted very well.

When searching on google better use 'infantile spams' instead of 'West syndrome' to find more information.

And do take a good look at this site http://kidsepilepsy.com/ (- search by diagnosis - infantile spasms) it's a great resource for experiences with specific childhood epilepsy diagnosises and specific treatments. You'll find many stories about West kids there.

I do hope to have helped you a bit to find good resources and contacts concerning West syndrome.

Is your grandchild on ACTH now? You'll definitely find more experiences with ACTH and West using the links above.
 
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