baby in family has infantile spasms, anyone know about this?

[Maje]

Hi

I am not a mother, so have not posted on here before, but see that there are discussions for parents of children with disabilities, and thought maybe someone could talk to me.

My cousin and his partner has a little boy with Downs syndrome.
Just found out today that he's taken very ill.
My mother described it as "cramps in his brain" (electrical), by which I assume she must mean some kind of epilepsy. Googled, and seems to me that it must be infantile spasms.
fits with circumstances ( Downs, which seems to be a trigger) and the prognosis they've been given.

Doctors said there's only a one in three chance the medicine will work, otherwise he will remain at current development level ( 5 months).

Has anyone got any experience with this?
I don't really know what I am asking, it's just all so horrible. They had settled into life with him so well, he didn't have any health problems and was happy and thriving, and now this, it's so bloody unfair.

Does anyone know if it's an either/or situation, i.e will he either recover completely or be severely brain damaged, or is there a scale?

How soon will they know if he recovers?

Thanks in advance for any answer.

My ds has infantile spasms as a baby and they started when he was 5 months old. Up until then he was slow to learn skills but wasnt too far behind other children his age. he underwent many tests to try and find the reason for the IS and he was found to have a condition called Williams syndrome. Williams syndrome and IS do not usually go hand in hand!!

We were lucky in that we managed to gain seizure control fairly quickly and we only had to go through a few combinations to achieve this.DS started to bcome aware of the seizures which was the worst thing for us as he would get so upset!

Hes now seizure free but conintues to be overseen by a neurologist. He is severely delayed if you compare him to another 4 year old with WIlliams syndrome but he continues to make progress all the time

THe yahoo support group which RIven mentioned was a lifeline for me through the time of seizures and investigating different medications etc- there alot of personal stories on there and alot of knowledge and understanding.

your right in that ins bloody ufair but children amaze and surprise us all the time!!!

I hope your family manage to get them under control soon xx

Hi Riven and lourobert

Thanks so much for your messages and explanations! I'd never heard of this condition before, and it's good to not be completely ignorant the next time i meet the parents.

And it is great to hear that the medications have worked for your children, shows that there's hope, even though the prognosis given is so bleak.

Seems so unfair though that your children both (like the boy in my family) have other diagnoses as well, and then got the infantile spasm in addition. Of course it is also horrible that NT children get this horrible condition, but these children have enough to deal with, without seizures on top.

I guess this really show us how his downs syndrome is a mild learning disability compared to the worst possibilities.

It's all just so hard to grasp, and that's just for is in the extended family, must be so awful for the parents.

The baby has been for the scans, and the doctors will try out one medication, and if that doesn't work they will try another one.
So i just really, really hope that it will work, and that it will work soon.

I will let his mum know about the support group, hopefully that can be of help to them.

I hope things keep improving for your children!

thanks again for your replies.xx

Hi. my DS had them too, a massive one on his day one, then lots of imperceptible seizures which we only knew about because he was wired up to monitors in the Special Baby Care unit.

It was really tough when he was little and a very worrying time... one of the worst things for me was that I was scared to sleep for years in case he has a seizure at night, so of course that sends you a bit crazy.

This support group has been a great help to me... and support from friends and family is so important...

My son is 6 now and doing fine on a low dose of medication. mild learning difficulties, but nothing we can't handle.

Maje,

I always used to think that 'just' the Williams syndrome would have been a piece of cake compared to the difficulties that the IS brought upon us ( and him)

Riven is very knowledgable so I would encourage your cousin to get in touch with her

Good that your keen to learn more so you can be as supportive as you can

x

My daughter Poppy (now 25 months) started having spasms at 7 months following a serious head injury at 3 months.

She started on medication within a couple of weeks of spasms starting (1 week for us to work out that she was having them and week for hospital to formally diagnose). We were asked to participate in the international IS trial ongoing at the moment and she started on vigabatrin and prednisolone concurrently immediately. Her spasms (previously 8 - 10 day) stopped within 24 hours and never returned. She was on the prednisolone for 2 months total which did result in side effects - usual eating twice as much as previously, subsequent significant weight gain but also disinterest in surroundings, playing, stopped smiling, interacting which at the time we weren't sure whether due to IS or meds. She was fine once stopped pred. and was on vig. only for 5 months. She stopped vig. 13 months ago and has been seizure free ever since.

Her development would appear to be normal (due extended 2 year check with view to discharge her after in few weeks to confirm but my gut feel but please bear in mind that the IS hadn't affected her development significantly at the time compared to what docs normally saw) - her speech was a little delayed but seems to have caught up so don't think as result of IS. There's a 30% risk of her having seizures in the future we are told.

It is so worrying. The statistics are grim 85% I think have some dev't regression following IS etc. We've been so, so lucky I think.

I hope this helps as a 'good news story'. I'm happy to answer any questions if you think I can help!!

Claire xx

Thanks Scrutler for the good new story, and others for comments.

We have got some good news ourselves. The visual seizures ( i mean the ones which can be observed) have stopped. Scans show there is still seizure activity, but less than before he started meds.

Doctors are more optimistic now, and so then are we

I realise that this must be a constant worry throughout childhood, but would be so wonderful if the meds are really working and seizures stops completely.

Ok, Riven, so I guess it might be some time before they see some progress with the other seizures then. Good to know, so i don't hazzle them for news ;)

Thanks again for answering me by the way. I saw on another thread that you have a lot of health worries with your daughter, very kind of you to take the time to help others.

Hi again,

though i'd add an update in case anyone is reading this.

The little boy is much better!
Medicines have been adjusted. Still some seizure activity, but he's back to his old self (with regards to eye contact, smiling, getting back strength in his limbs). Doctors says that at the level it is now it is not hindering his development.

They are still monitoring him of course, but he's down to monthly EEGs ( or do I mean MR?) instead of weekly.

Still a long way to go I'm sure, and worries for his parents, but at the moment things look so much better for him than a few weeks ago.

thanks again to all who replied to me, and best wishes for the good health of all your kids.

my son alfie has infantile spasms as i just found out yesterday. not that this comes as a shock as we were for warned that he could have seizures. alfie was starved of oxygen at birth by an incompetant midwife. due to this he is severly brain damaged (cerebral palsey) he's 9 months. we've been told that it's unlikely that alfie will ever walk, talk etc. his outlook is bleak, he has many many problems. he's here though and we just adore him he fought so hard to live. we were told when he was 3 days old that he probably wouldn't make it, so we're really lucky to have him.

i think the worst thing of all is that alfie was a perfectly healthy until that fateful night. i will never forgive and i hope justice will be ours.

hi everyone. im in shock. seven month old son has IS. Until 2 weeks ago never heard of it.Then i noticed the spasms, went on net, and wham! my worlds fallen apart. The prognosis sounds so awful. Pushed to get him seen, now on prednislone. Seems no one understands how im feeling, could cry every night. does it get better, the dealing with it? the stress of trying to not get him infected with colds, chicken pox,telling people, them saying, ' but he looks ok!'watching son like a hawk seeing if hes having a horrible spasm.hours at hosp for blood pressure monitoring. feel so isolated, has anyone any advice? thanx for reading.

hi Riven. No he was developing normally, came on suddenly. We're in Bedford, so our care is betwwen here and Addenbrookes, who are fantastic. He has a MRI scan in April. So tiring, been constantly at one hosp or another this past two weeks.In fact i was hosp this morning,bp monitoring but then they took blood tests, next week checking his eyes...poor mite. four hrs today at hosp. Its the not knowing that im finding hard,whats going to happen.
Glad ur dd is doing well.
Would love to know more about support, its so scary.