Infanitle spasms- does anyone have any experience???

[lourobert]

Hi,

Ive met a few mums whos lo's suffered from infanitle spasms when they were babies, and this was a great sourde of info for me. Im just wondering if theres anyone else who has been through the experience of dealing , managing and coping with spasms.

TIA

Bumping - can;t help but someone will be along soon who can.

Hiya

Thought I would say hello, have already spoken to you before

How are you doing?

Pretty good. was hoping some other people may have some experience/knowledge of IS but it doesnt seem so....!

Were doing ok- still having very slight spasms now and then and still working with meds- which drives me crazy.

How is his development?

Obviously IS is very rare, most people havent even heard of it

I did find a yahoo group, it was american, but when Ellie was first ill I found a few people to chat with. But a lot of the children on there had very severe needs so it was a bit upsetting

Up to you, I can give you a link if you want. I think I still get send t emails about it

My daughter had IS as a baby. She's now nearly 3. What would you like to know?

I found this

www.wssg.org.uk/

It has a forum support group

It looks really good, although maybe looks new as not many on it though

But there are a few parents of younger children who are having daily spasms who you might be able to chat with

Bob- im interested to find out whether children grew out of the classic clusters of spasms onto other forms of epilepsy or not. I guess its just useful to hear peoples stories sometimes.....!

KIm also wanting to speak with people whose Lo's used vigabatrin to cntrol the spasms and what their experience of this drug was.

Annie bear- I will check out the web address you mentioned. Ive been active on the yahoo one for a while but have fuond myself not really wanting to participate of late.

My daughter was cured of IS with a combination of ACTH and vigabatrin. She's now nearly 3 and remains on vigabatrin. The IS was 'cured' within 5 weeks of it starting and in the last 2 and a half years she has had 3 non-IS fits so we guess she may have epilepsy (she has brain damage) but the vigabatrin has kept everything just fine.
The Yahoo group is mostly American but its pretty helpful - I've been on it nearly 3 years now.
My daughter is also bright despite all the horrible predictions about IS and cognitive impairment and despite her severe cerebral palsy. Vigabatrin really has been a wonder drug for us.

Bobalinga,

Did it make your daughter sleepy at first until she got used to the dose?

Yes, she was very sleepy for nearly a week. Lucky as we were moving house that week!
ACTH on the other hand, turned her into a yelling blob. But it worked.

Bob- Just realised that Ive spoken with you on the yahoo group before....!!

We never tried ACTH. That another that puzzles me in that there seems to be no protocal by way of treatment when it comes to I.S it seems to be determined by the consulants experience of certain drugs.

Were currently using top whack of vig and a low dose of Epilim.....!!

So confusing and frustrating.

My ds also has Williams syndrome and I so wish that the IS hadnt come about!!

I'd go for the ACTH. It works for about 75% of Infantile spasms. Not a pleasant drug though.
We're lcky in that some of the UK's Infantile Spasms experts are around here. That meant a quick dx and the attentions of consultants who had actually done research (UKISS study). Celyn's doc goes to IS conferences. Many paediatricians have never seen a case before. Which is odd cos there are 15 people i know personally in this area who's kids have or have had IS. Maybe its something in the water!
I don't know a huge amount about Williams syndrome. There's a little girl with it in our special needs toddler group. She's very verbal but can't understand what you say back to her. Bright in lots of areas, delayed in others.

I suggested ACTH previously to our consultant but he didnt seem keen. Its like he didnt take vig to the max before introducing the epilim so maybe we didnt need to introduce it iyswim.....?!

Once Id spoken with you before I contacted John Osbourne at Bristol and he kinndly emailed me back. He personally knew our consulatnt and sang his praises so Im confient that we are in capable hands but I just cant help but think that if wed taken an alternative route,medication wise, then our outcome may be better....?!

I know a lady who has Williams as does her 4 year old son. My ds will likely be more severly affected due to the spasms I would have thought.

I know I've gone on about this before but Epilim is not a good drug for Infantile Spasms. The 2 main ones are ACTH and vigabatrin and new studies are showing they work best in combo.
I'm just fretting your son isn't getting the best treatment.
Its not too late ever to add drugs in. My friends daughter had IS until 3 and then started on ACTH. Spasms gone after the 3rd injection.
The UKISS study is online somewhere. Might be worth shhowing to your doctor. From being on the yahoo group I know different docs like different drugs but its rarely backed up with serious research and mums often have to point doctors at the research!