jaq26
New Member
Posts: 8
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Post by jaq26 on Jan 10, 2008 21:14:42 GMT
Lydia has recently been diagnosed with a rare form of epilepsy called West Syndrome/Infantile Spasms. She has spent 8 weeks in hosptal whilst docs. tried all sorts of medications, tests and scans to find cause and control of the attacks which started at four months old. (Lydia is now 15 months). The docs. at North Staffs Uni. Hospital have referred Lydia to Manchester as they have no medical experience or knowledge of a child with Downs and Infantile Spasms. This is my reason for sharing this with you. Does anyone have any experience of their child with the combined syndromes. I have tried runnng a search on the net but studies done in this area are limited. It woud be great to hear from a family in a similar situation. Thanks guys Jacqui and Little Lyd
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Post by Rilith on Jan 10, 2008 22:36:11 GMT
Hiya Hunni, I was chatting to you at the coffee morning at the Downs group (Sarahs friend) How are you hunni??? I am sure someone will come along and chat to you. We do have a lot of lurkers (people who read more than they post) hopefully seeing you here they will be able to talk about their experiences too. While you are waiting though, please just dive in and join in the chatter
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jaq26
New Member
Posts: 8
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Post by jaq26 on Jan 10, 2008 22:53:48 GMT
:)Hello, I'm glad you reminded me.. when is the next coffee morning I forgot to write it down as soon as I was told... my memory is diabolical. (There are post it notes all over my house... and children so I can remember names!!!) lol. thanks
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Post by Rilith on Jan 11, 2008 9:11:51 GMT
LOL No idea I usually ask Sarahm, I'm like you I have to write it down or else it gets forgotten.... LOL and I forgot to write it down too ;D
I think it starts again next week but I am not sure.
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Post by sarahncharlimai on Jan 13, 2008 22:47:47 GMT
hi Jaq, glad you finally joined, its a fantastic site and everyone is lovely, next session is 17th are you the 10 oclock or 11 oclock group? We have some info at work on west syndrome (youve met a child i work with) ill photocopy it and get it to you, you may already have though. Speak soon love Sarah x x
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jaq26
New Member
Posts: 8
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Post by jaq26 on Jan 14, 2008 20:54:35 GMT
That's great thanks Sarah. I'm not sure what time CDC group is though. Lydia had another EEG today to see if the medication is working!!!!!! Hope to get the results soon. How do I put a picture of Lydia up... I'm well and truley bamboozled!!!!! Thanks
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Post by sarahncharlimai on Jan 15, 2008 21:49:08 GMT
hi jaq, i would imagine that lyd would be in Charli's group just going on ages, and thats 11 till 12, could you not ring and ask ive got the number if you need it. Im really hopeless at putting pics on here, Mark does it for me, we use image shack, but i think most people on here use photobucket, the best person to ask would be lizzy, she helped me last time, ill keep my fingers crossed for you let me know how she gets on x
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Post by odiness on Feb 17, 2008 14:08:10 GMT
Hi jaq, just catching up with threads as not have much time lately. Not sure how you are getting on with Lydia and the consultant in Manchester. One suggestion is that you get in touch with The David Lewis Centre. They are based in Cheshire and the only centre in the UK who specialise in Epilepsy. You may be able to get a referral to a consultant there and they are clearly very knowledgeable and have a special childrens department. They also have free therapy and conferences as far as I know. Lucy x
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