Infantile Spasms

[Libre]

Our son has been recently been diagnosed with Infantile Spasms. He is now 5 months old. He seems to be developing normally, with the only issue he seems to currently have being his lack of use of his left arm. He can use it, but prefers not to and holds it quite close to his chest. Obviously we are worried that at some point in time, if we do not get these spasms stopped that his development may regress or stop as is the norm with IS. He has been on ACTH, which didn't work and is currently being weaned off. He started Vigabatrin a couple of weeks ago which seems to be doing something as the number of spasms per day have reduced. My reason for posting here is that I was hoping there may be someone out there who either has a child that has/had Infantile Spasms or perhaps who knows someone in this situation, as it would be good to speak with someone who is going through a similar experience....

[heartinthecountry]

Hi Libre - welcome! there are quite a few parents who post here whose children have or have had infantile spasms.

My dd1 is 5 and has IS. She has them as part of a syndrome so difficult to tell how much of her delays are due to IS and how much due to other brain abnormalities. she is on vigabatrin, phenytoin and topirimate. Vigabatrin alone didn't stop her seizures but I know it has worked for others. Or you may need to introduce a second med. you are right that stopping, or at least minimising, the seizures is really the most important thing. But at the same time you don't want him on so much medication that it affects his development in any case. A difficult balancing act. Are you under a good neurologist?

How is your ds on vigabatrin? Has it made him particularly sleepy? Hard to tell I guess with a 5 month old.

Anyway, I'm sure some of the others will also be along. You are in good company here.

[needmorecoffee]

Hi Libre. My dd(now 3) had infantile spasms as a baby. She started at 11 weeks old. We got a cure ona combo of ACTH/Viagabtrin and she remains on vigabatrin 3 years on.
Despite her severe physical disability (she was brain damaged at birth and has cerebral palsy) she is as bright as a button)
We've just done a second course of ACTH as after 3 years seizure free she started to develop lennox-gastaut syndrome which sometimes follows IS.
There's great yahoogroup for infatile spasms.
Where in the country are you?

[soflo]

Hi Libre. Saw your post and just had to say hello. This is going to be a really quick post as it's nearly bedtime here and bit chaotic but just had to say hello. I am relatively new here - my dd2 is 9 months and has Down's Syndrome. We have just received the news that she also has Infantile Spasms (complete shock from the blue). We started on Vigabatrin as soon as we found out and it seems to be working so far - we have gone from around 10 spasms a day (she looked like she was startling, just a split second, then back to normal) to none today. We are due to have another eeg next week when I guess we will see a bit more. She has perked up quite a bit too, and is doing things we hadn't noticed her doing for a little while(with hindsight). Having said that her sleep patterns are all over the place, quite wakeful at night, so makiing up for it in the day.

Sorry it's a bit of a quickie message. I will certainly be back on here later. Take care. x

[anniebear]

another quick one here

my dd now age 6 had IS, diagnosed at 11 months

But this was an after effect of Meningitis

she was put on Nitrazepam and the seizures stopped within a couple of days and we saw a different child.

It was like she had 'woke up' she started babbling and making noises and smiling lots!

she came of Nitrazepam after 2 years and has been seizure for nearly 3 years (apart from a nasty one off one in July 05 but that was due to something else)

I will e mail my friend and she will post. Her son had IS also

[needmorecoffee]

from being on the IS list for over 3 years you can see different meds work for different causes but I've also noticed a pattern that some meds work better with different categories. So many different causes of IS.
Libre, you'll need an MRI and CAT scan to start investigating why your lad has developed IS. If those are clear then there's metabolic and genetic testing and what have you.
My daughter is on 120mg/kg of vigabatrin. It didn't work at any doses below that. The 3 main IS drugs are vigabatrin, ACTH and prednisilone. Like Annie says nitrazepam can work. Epilim rarely. Lamotrigine (dd is on that too cos she developed complex partials this year and status seizures)
In DD's CP group there are 6 kids with or who have had IS, at her sensory group another 9 more. Bristol seems to be a IS hotspot!! Or it may be cos a lot of research is done here and in Bath so docs recognise it. There's a study labelled UKISS that might be worth reading.
Just don't read the medical prognosis cos its always negative. Your child is an individual and I know loads of IS kids, some non-disabled and some with severe CP who have gone on to develop mentally 'normally'. When dd was diagnosed, and with her having brain damage, they said she would never devlop and I got in a terrible state reading about IS.

How's your dd Annie Bear. Does she have regular EEG's? My dd was SF for 3 years then started with status seizures and complex partials this March. Got rid of it all again.

[anniebear]

she has special needs, as she suffered brain damage due to the meningitis

But we had got told if she survived she would be severly disabled......

But shes walking, running talking !!! (and Causes a lot of hassle and stress for us lol)

we know she has double the chance of developing epilepsy than the next child, But I just have a bit of hope that she wont as she had it as a complication due to Meningitis and also they were stopped so quick (Just a small hope though lol)

shes actually been seizure free for 5 years, but has been off meds for 3

she doesnt have any EEG'S, we dont see a Neuro anymore either as we were going to Alder Hey to just be told, "Great, wow, shes marvelous!!" Very nice of course but a lot of hassle going for that!!

we just see Development Paed at CDC now

sorry foir waffling!!!

[magsi]

Hello Libre

Our son was diagnosed at about 5-6 months with IS. He has hemiplegia affecting his right side. Reading your post was like taking a trip back in time for me. Ds had various mixes of medicins to bring them under control, and eventually was on the full dosage allowed of vigabatrin and something else aswell (can't remember now, ds is now 6!).

In the beginning he was having a lot of spasms during the day and they would happen in 'batches' throughout the day. Medicin did eventually bring them under control and he has now grown out of them. He had a couple of EEG's and 2 MRI's which gave the results he had CP in the form of a Hemiplegia.

Ds also had no movement in his right arm or hand at all and spent all his early years clenching his fist.

Sounds like you are in the early stages and just finding things out. Keep posting on here for any queries. There is always someone who has been through the same as you are going through now.

[needmorecoffee]

Magsi and Annie - how your LO's doing cognitvely? dd is now 3 with severe CP and when she got IS they all said she would be cognitvely impaired too. So far she doesn't seem to be despite the IS but I fret that she might stop developing and plateau.

[lourobert]

My son has/had IS. He has not had a seizure in 10 months now (touch wood) he is on vigabatrin and epilim. He also has Williams syndrome.

I havent time to write now but any questions you have will surely get answered on here as theres a few whose children have/had IS

[mummcgoo]

My son has epilepsy and originally the Drs thought he had IS. There is a support group I can't remember the name of it, under West Syndrome ,there is a UK based group as well as a Yahoo group. I found a site at the time which was a great success story, of a boy who had IS and was over 20 years of age and all the things he had done.