Needmorecoffee! You still about? Have some Qs re:bloody infantile bloody spasms :-(

[feelingbitbetter]

If you are still here?

I think I'll just carry on typing and bumping - you'll find it soon.

Anyhoo, have had a bit of a time with DS over the last couple of weeks as you'll know if you've read any of my other whingey threads.
He has had a cold, feeding problems/reflux which was temporarily cured by Gaviscon. Have had to stop the Gaviscon now as Gabe has a rash over neck and chest. The result is, poor boy is OK but generally out of sorts.

This morning when he woke, (well quite close to then a I could hear him gurgling in his cot whilst I put some washing away) he was a bit twitchy. He is not normally. He was throwing his left arm back, above his head and turning his head to the left. I saw him do it 12 times but not in quick succession, probably over the course of a minute. He was fine straight after, laughing and playing. when he woke from his next nap, I noticed both knees were coming up towards his tum, 18 times, about 2-3 mins. It was quite a subtle jerk and no other bits affected.
Phoned neuro, went through it all, she said keep an eye on him over the next week, we have appointment next monday, and that it didn't sound like typical IS but to pay close attention. He hasn't done it since then (midday-ish)
She said that now, if it is IS, it may not happen every time, but it will eventually and that the movements will increase in number and be more exaggerated. Not that I don't believe her but I want to know if this is what happens in the real world rather than in a text book?
She also said,(as did GP who I've seen today re: rash) that he could have a viral infection and that his cold symptoms, reflux, rash and increase in jerks may all be explained by this.
GP took some blood today and we are going back tomorrow. It all sounds quite reasonable to me and I'm not in a flap about it, just want to know really, how they present in the real world.
TIA x

bump

bumping for you. Been there too but no where near as knowledgable about IS than NMC.

NMC isn't normally on here in the evenings.

bumping for you. Been there too but no where near as knowledgable about IS than NMC.

Not that I don't welcome anyone elses experiences! Just I agree, NMC is a bit of an oracle on these things. Thought I'd caught her earlier 2shoes, she posted on a thread just before me, but I know there is an awful lot going on for her at the moment with DDs op and stuff.

Hey feeling bit better, my ds, 20 months has genetic disorder, and has severe epilepsy, but his started off with infantile spasms after waking

Gabe's do sound a bit like this, pulling legs up , unless sore tummy? And wat you wrote bout his head turning to the side, Jack did this loads

There is no text book way to describe it...every1 is not same.....but Jack now has myoclonic epilepsy & will get full blown epilepsy (grand mal)as his brain matures.

I do know a fair bit about it, so if there is anything u need to know, will try my best to help

Jack was firstly diagnosed with reflux rathr thn epilepsy as apparently wn babies are small a seizure presents itself very subtle as the brain is too immature to deal with a bigger seizure

But as the baby grows, brain matures an can deal with bigger seizures loadsa love

Thanks C&JMum. Bit of a quandry at mo as he is very likely to develop IS and full blown epilepsy, and I wonder if knowing this, I'm making too much of things. He does have a sore tum AND he has also started to lift his knees up as a definite decisive movement (bit later than normal, but a developmental milestone so the physio says ). When I touched his legs though, they felt spasmy, rather than controlled movement. It is part of Gabes normal myoclonics to turn his head to the left, its just shaken me a bit as he doesn't ususally do it on waking.
But, he has been under the weather for a bit now, so I suppose I'll have to wait and see a) whether a pattern emerges, or
b) whether they just pass as he recovers.

Did you know straight away they were IS? I always worry that I will miss it, but today there was a definite change in his jerks.
His last 3 EEGs have shown no sign of epilepsy, just action in line with his brain damage. I expect we'll have another one soon.
Neuro told me today that IS need to establish before they can be picked up on an EEG. When did you have yours to confirm IS and how long was it after his seizures started?
Any help gratefully received! xx

Hi FBB, no advice but posting as I'm sure you're worried about your wee man. Hopefully NMC or someone will be on soon to give you advice. Hope neurology appt goes well!

Bump for you

Hey feelingbitbetter,

Well Jack did not get a diagnosis of epilepsy until Jan 31 this year,despite m keepin at them for months, had the eeg done in Dec and abnormalities were picked up, wasn't told then it was infantile spasms although I sed to consultant I thought they were
He then had an mri which showed damage to left and right temporal lobes in brain affecting memory, sense of smell and co-ordination

But now he has myoclonic epilepsy the consultant told us only fw mnths back that wat he had to start with was IS..frustrating

His seizures gradually got worse and worse ovr period of mnths,he is nw 20 mnths and does have bad spells then good...very difficult, tht is the part I find most difficult

But he is on lots of meds and we have a lot of ppl helping us, keep at them feelingbitbetter, I will tell u tht, because we hd to....and only bout few mnths bk it is a genetic disorder, no name for it prob never will be...wat your saying about his legs feeling spasmy tht def sounds like Jack did and till does, and the waiting to see a pattern is very difficult... remember it well and know exactly wat yr going through, it is a terrible time.....Pls keep in touch, and kisses to Gabe, my email is [email protected], be soo happy to talk to you

Thanks all.
He has been great this morning, all smiles and laughter and no jerks on waking since yesterday lunchtime. I am keeping a close eye on him, but think I may have over-reacted to it. Seeing the Doc soon, so may have some answers re:infection.

X posts with you there C&JMum. Thank you for your post. It is very difficult coz I need to watch for them, but also need to relax and not get caught up in it too. Gabe is at least 50% for epilepsy and from what you've told me about Jack, it sounds like he may follow the same path.
Hopefully we won't have to battle too much as everyone is expecting it at some time and neuro has made herself very available to me, for which I am very grateful.
You on facebook?

Hey feelingbitbetter, i am on facebook, but never on it. Are u on bebo? Jack also has a page called "kids with epilepsy"

just found it and yes, this is right
'she said that now, if it is IS, it may not happen every time, but it will eventually and that the movements will increase in number and be more exaggerated. Not that I don't believe her but I want to know if this is what happens in the real world rather than in a text book?'

Unfortunately. Dd's IS started intermittently and the first EEG didn't show the hysparrythmia of IS (and you don't always get hyps) It was about 3 weeks after they started that it showed up properly on the EEG.

It does sound suspiciouly like IS and thank god you have a neuro who is listening! But its always possible it isn't. Try and video them if he does it again.
Long as you are watching and holding it in mind you can get started with treatment straight away if it turns out to be IS. The two front line meds are vigabatrin and ACTH. Don't let them arse about with anything else.
And don't read the medical literature. Most of it is old and the MR rate is much lower than they used to say.

Thanks again.
Seen GP today, blood tests all clear and rash is probably a reaction to something. Can't think what - I've got very sensitive skin so don't change anything ever or I'll be plastered. Unless something has a 'new improved' something or other. Anyway, nothing to worry about .
He has not been twitchy on waking since my first post, but I am keeping a close eye. He has been on sparkling form today - if something was bothering him, he seems to be over it.
I already have camera on standby to film any episodes. I hope I won't be needing it but suspect I will . Forewarned is forearmed, as they say, so I am not dwelling on it.
Ta for the drugs tips, I have written them in my DS bible for reference.
Cheers all xx