Infantile spasms/fits
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- Infantile spasms/fits
27/7/08 20:00
25/7/08 23:45
Just a quick update on us here.
Lucy is still having her funny turns but her eeg came back normal and the consultant is at a loss really although he says she may have mild epilepsy but the turns do seem to be getting less of a problem so we will just wait and see.
Apart from that she is doing great at the moment and although a fair bit behind where she should be without any condition we think she is doing amazingly well.
Hope you are all well and your little ones fit free
Sally x
10/7/08 19:29
hi to everyone who's joined us - it's lovely to hear from so many people going through similar things.
Eleanor is now weaning off the vigabatrin - and so far no spasms ( thank goodness)..
good luck to everyone...
7/7/08 19:04
hi, i am just passing thru as i posted on this thread about my ds justice a few weeks back now and you guys were so supportive, anyway he is a bit better now the reflux is calming down but he had a big one yesterday, he went really stiff red for a few seconds then was quiet for a few more seconds...
we are off to hospital on thursday about his milk and soya intollerence and reflux hopefully we can get a proper diagnosis rather than all the guessing thats been going on so far
best wishes for all your lo's
3/7/08 21:27
wondering if i could join you I have a 3 year old with a rare genetic condition who has had epilepsy since the age of 11 mnths1/7/08 22:45
Oh sorry meant to say this is them telling me about Zoe who they have not observed or done any tests on, and they can judge by that,,,,,god they are good aren't they, just like the gps who said Zoe is thriving and fit and healthy and all the problems are in my head......................GRRRRRRRRRR. Let me at em!!!!!!! Sorry off again LOL. Sharon x
1/7/08 22:42
well went to see pead today and what a waste of time and breath it was, they said zoes seizure's are shaking with her reflux.......she said that sometimes when the acid comes up it makes them shake, i said what about the floppiness after when i was shaking her to get a response and nothing then when i did get response about a minuite or so after shaking her she just looked at me absently and then went back to sleep, she said nothing then she asked if she had any more non breathing episodes and then said that she will grow out of it soon and the reflux, i said that is funny she as only just been diagnosed with it just dead on 4mths ago stupid pathetic woman, she said then that what about another eeg? i said what for to waste both our times, zoe just went mental and just pulled the probe things off with half her hair and just would not sit still, it is pointless upsetting her like that again so because i got to see one of the conultants muppets when i thought i was going to see him i am furious........making me out to be some paranoid mum i have been fobbed off before and i am p***ed off with that. next time she has one i will take her straight down to a&e and will not leave until i get answers, all this time i have waited to try and get it on vid cam and it is hard because she has them anytime between 12.30-4.00am in the morning. touch wood she hasn't had any recently i don't want her to have them but if she does again i want answers. sorry for ranting on.......hope all your babies are fine? sharon x
30/6/08 10:40
Morning my nephew was one on thursday but since he was about 8 months when he gets upset he holds his breath and passes out and goes very stiff, on friday he fell of a step and banged his head and held his breath but then went into a fit which lasted over five minutes and was taken to hospital and was keep in overnight, yesturday he had another one and again went to hospital but was sent home. when in my care this morning my 17 month old went near him and he went into a fit lasting again about 5 minutes and when he came out of it he went straight to sleep.
Tracy 28+6
24/6/08 16:41
hi, can i join you ladies, i have a 6 year old daughter with a rare chromosone disorder, she had her first fit last week at school, took her to the hospital and she seemed fine after that, since then she has had a few absent sezures so i think she is going to go for some tests would be great to talk to others in the same situation, i feel like i am constantly waiting for her to have another one21/6/08 22:04
Hi Sally oh well at least they are trying to get to the bottom of it. I know it is a pain waiting i am still waiting also, but i have been reading some interesting stuff on some babies that have seizures the can be caused by blood sugars going low which could make sense about the time in morning it is happening and not happening all the time with all the meds she is on i don't know, it might be me fishing for answers i hate the not knowing. I hope they find the cause of them soon for you. At least it wasn't negative then they would have stopped and you would be back to square one not knowing what it was. Cross fingers you get the answers. Sharon x
21/6/08 11:31
Hi how is everyone and your los.
I had a call from Lucys consultant yesterday and the eeg was inconclusive although he said it showed no epilepsy but did pick up unusual brain activity.
He said they have recommended repeating the test but she will need to be monitered in sleep as this will show the changes more clearly.
He is going to speak with one of his collegues (sp) and is getting back to me next week.
Arrgghhhh another wait
Lots of best wishes to you all
Sally xx
14/6/08 20:22
Hi its me again i hope your babies are ok i hope the medicine works for eve and it is funny how they all seem to wake up at similar times. I still have heard nothing from hospital. Zoe as had a good few nights a little restlessness but has not had any do's she had a little stare today in front of her other grandma but no episodes on night or not that i am aware of. Cross fingers for another night of sleep....Sharon x
13/6/08 20:45
I hope the lamactil do the job for Eve. it's funny eleanor does a similar thing with sleep - she is generally awake from a bout 4 - 5:30 . Fortunately she is 'quietly' awake and just seems to spend the time shimmying around her cot and messing around with her teddy bear
13/6/08 11:58
just bumping this post up for all us mums who have poorly kiddies,hope you're all ok
10/6/08 11:30
Eve's now on clonazepam and just started Lamictal yesterday,fingers crossed it all works for her.Eve also sleeps very badly and is usually up from 3-4.30 in the morning,she's only been like this since she started the meds but its only a small side-effect which we can cope with.
Absences can be very scary for other people to watch don't you think?We're all used to them here but I do notice people looking at her strangely when she's zoned out.
10/6/08 07:39
Hi ladies well i took the vid cam to bed and filmed her from 12.30am until 2.30am not much really then went to sleep was woken at 3.00am with her thrashing around but by the time i come around and realised and jumped to get vid cam set up it had stopped (typical) then again at 3.30am but not sure after that i was in deep sleep. I will try again tonight and keep trying i am determined to get one so i can take it to hospital with me and show them. Zoe also had a blank episode again yesterday i was in doc waiting room and Zoe went to sit next to a lady and the lady was talking to her then she was smiling then turned and just stared i was clicking in front of her face and saying her name she just stared for about a minuite and then blinked and looked around as if to say where am i then started babbling and smiling again. Very strange i don't know wether she is doing this because she is tired with disturbed nights sleep or what. She also woke up at 4.15am this morning wanting to play she has been doing that a lot lately i am wondering wether they are waking her up after she has dozed after them if you know what i mean. I just don't know what is happening i do know they are getting worse as they used to be some time between episodes but now they are more frequent i wonder if it could be the medicine that she is on. She did have them before the medicine but not often. I keep thinking all sorts i just wish they would hurry up so i can get some answers. Sharon x
9/6/08 22:04
Callie - what meds is Eve on now?
Do they effect her much?
9/6/08 22:02
Eleanor had an MRI when she was about 7 months. hospitals differ in their policy - our local one does them under general anaesthetic - she was asleep sucking on her dummy anyway - they put the mask over her face and she drifted off. Other hospitals will do them under sedation, just give her something to make sure they are a sleep. It takes about thirty minutes to do and then a bit longer to get them round from the anaesthetic. Eleanor was a little star and seemed completely unphased by it.
I'm not sure with the sleeping EEG - i know they trid to get ellie to go to sleep in hers and she was the second time she had one. I guess the other option would be to monitor her overnight? I guess you'll find out when you get an appointment through.
Eleanor is just on the vigabatrin now - she's due to start weaning from it at the end of the month . We are obviously rather worried about it - we think she's having some absences but that's nothing compared to when she was debilitated with the spasms.
9/6/08 21:07
Sorry was also going to say that my lo had an mri a week after she was born and they sedated her for the scan which lasted about an hour. The results took about a week.
9/6/08 21:05
My sister had a sleep eeg done recently but she's 30 so might be quite different than the one for babies. She had to lie in a room and get herself to sleep whilst someone sat beside her monitoring which she said was really difficult but again for babies might not be such an issue. She had to sleep for about an hour to get a reading. Even though she didn't get to sleep that easily and deeply, they still got a reading in order to diagnose her epilepsy. Sorry, probably no use but hth and good luck!
Sorry i haven't posted for a while. Tend not to when things are going well. We are having a bit of a tough time and the IS may have reared it's uglyhead. Eleanor is presently weaning off vigabatrin - and is down just belowhalfway. (sorry my space key is a bit rubbish). anyway, she is definately having obvious absences now and over the last two days she'shad a couple of eye flickers in keeping withhow the spasms started last time. I think i'm finally realising what a darkspectre IS actually is and what a horrible profound effect it can have on my beautiful little girl. we are going to ring the consultant in the morning to see if he wants an eeg before we go and see him next friday...