infantile spasms

[meemee]

My DS2 has just been diagnosed with infantile spasms aged 7 months. He started having seizures 2 weeks ago and has been quickly treated with steroids to stop the seizures. We are going through hell - nobody deserves to be as distressed as he is - and won't find out any causes/prognosis for 5 weeks or so until they can control the seizures.
Does anyone know anything about this or at least have tips on how the hell to get through this?

[nannyjo]

sorry i've got no advice for you but just wanted to say how sorry i was for you it must be a very hard time. lets hope the prognosis is good and it is just a phase. is it the same as convulsions??? i had them as a baby and it all passed quite soon

Best of luck, lets hope this bumps for some more helpful posts.

[charleypops]

Bumping this for you meemee. Not the same thing I know, but my six week old ds had fits shortly after he was born, we were in scbu for over a week so I know how you're feeling. If you're not sleeping everything will seem a hundred times worse in every way, so try to sleep.

[meemee]

thanks nannyjo and charleypops - it's quite amazing once you're in this kind of situation to discover how many people have experienced the awfulness of having a really sick child. we've had a good calm day today with no seizures (touch wood) and a few smiles. we're taking it day by day and hopefully the only way is up...

[anniebear]

Feel for you so so so much. How are they trying to control the seizures?

My Daughter had Meningitis a few years ago and went on to develop IS.

Please Feel free to cat me.

Have you looked up much yourself?

Have a look at

www.epilepsy.org.uk/index.html

and put in Infantile Spasms in the search box

And do go onto the Special Needs section on Mumsnet . There is another Mumsnetter called Bethron whos son has IS with no diagnosis. If you go on to the SN section and put her name down for the title of your thread, I am morwe than 100% sure she won't mind you asking her.

Tell her Anniebear sent you!!

Hope your sons seizures are under control soon. I know how awful it is to watch them each day

[anniebear]

My Daughter didn't go on Steriods, but I do know it can be horrible and terrifying to watch the effects they can have on your baby.

Just keep thinking that if it stops the seizures it will be so so worth it

Sometimes there are causes for IS, underlying problems that cause the seizures, but lots can have no cause for it.

Did your son have any problems before these seizures started, either during or after birth?

My Daughters spasms were stopped very quickly and after 2 years on meds she came off them fully in March. We are just waiting to see if she goes on to develop anymore

[charleypops]

Meemee - I scared myself to death looking up stuff about fits on the internet and cried and cried and couldn't really sleep properly or eat for days. I kept trying to pretend I was ok, but I wasn't (I'm still a bit shaky tbh). No one really knows what these seizures can mean - they could mean nothing, so my advice would be to avoid looking stuff up on the net and, like you say, take each day as it comes and enjoy your baby. And stay positive

x

[meemee]

Have been trying to get online all day but between my 2 sons, they have kept me busy since 5am - you know how it is! It's very comforting to hear of other people who have been in this scary place and I am particularly cheered by the story from Bethron about little Aaron - I'm glad he's doing so well now. I will try to CAT you but am computer illiterate and totally idiotic at the mo so it may take a little while...
Jude has had another seizure free day - touch wood - that makes 6 in a row now. Of course, we may be missing some - absences etc - but he's loads better than he was last week and even sat unsupported for the first time on Sunday!
The steriods that he is on terrify me - they are obviously doing their job but the potential side effects are horrible and Jude is extremely irritable and knackered all the time but not sleeping at all well at night - could this be the steroids?
Next EEG is booked in for next Weds so fingers, toes etc are all crossed...
Will try to find out about CAT stuff now..

[meemee]

Morning! Thanks for the message, Bethron. Having had another night where Jude woke 6 times!!!! it's good to hear that this might be because he's starving. Will certainly give him a bottle tonight - I'm still breastfeeding him at night but this is obviously not enough.
Developmentally, we haven't seen any delay - smiling, rolling, sitting etc all fine so this has got to be a good sign.
We're off to see the consultant today...
(I did the CAT last night which was, as you say, simple enough!)

[miffette]

Hi i have a 7 month old baby who today had 6 short little fits i suppose i should call them. he was fine after, a little subdued at first but then back to his happy smily self. the paediatrician says to wait and see if it happens again before doing any tests but that it could be Salaam seizures from the way i described them to him. now i've looked it up online and realy wish i hadnt. is there anyone out there who has some experience of these please. I know its early days but i am still so very scared.