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Seizures starting I think

(11 Posts)
badkitty Tue 01-Sep-09 22:44:14

DS did a number of little twitches when I was giving him his bottle this evening. Think it must be the start of seizures - he hasn't had any clinical seizures since a couple of days old. Know it is not surprising given his brain damage but still terrified as to what will happen. Not sure what to do - will phone hospital tomorrow I guess they will book him in for an EEG. sad

feelingbetter Tue 01-Sep-09 23:02:07

It's crap sitting and waiting, isn't it? My DS does have epilepsy and was always very, very jerky and twitchy, but was and still is much more so when he is unwell.
Maybe the same for your DS? Definitely worth an EEG though.
If it helps, we were in the same position and found that dealing with the reality of it was much easier than the waiting for it. It was almost a relief to stop holding our breath every time there was a new/bigger/longer movement sad

badkitty Tue 01-Sep-09 23:13:36

Hi FB I was thinking of you and wondered if you were around as I know you have similar experience. It is so horrible especially as DS has been making quite good progress recently. Showed the video to DH (my Dad happened to be there with camera so got him to video it so could show it to doctors) and he thinks it does look like seizures.

How is your DS doing since recent diagnosis? Hope he is getting on ok.

TheDMshouldbeRivened Wed 02-Sep-09 10:11:46

How old is he?
dd started seizures 3 months after birth (its usually between 3 - 6 months). Do ask about infantile spasms as they often assume its 'normal' epilepsy and forget to look for this particuarly unpleasant syndrome. The hypsaarythmia pattern doesn't always show up straight away. IS needs very specific drugs.

badkitty Wed 02-Sep-09 10:58:04

Nearly 9 months. I have been fearing infantile spasms - have read a bit about them from people's experiences on here. Still waiting for consultant to call back at the moment. He seems on good form this morning anyway.

badkitty Wed 02-Sep-09 12:44:04

I mean DS seems on good form rather than the consultant obviously!

feelingbetter Fri 04-Sep-09 19:05:18

How's things Badkitty?
Been thinking about you and DS x

pushkar Fri 04-Sep-09 20:27:13

pleaase have a look AT STAN KURTZ if you google recovered or google stan kurtz you can see the videos of ethsn his son,
he cured him with mb12 [vit b12] and valtrex
the vidoes are seen if you google his name and also on u tube
DMG a food supplement as well as coconut orghanic oil helps with seizures go to

badkitty Sat 05-Sep-09 22:59:40

Being seen by consultant in epilepsy clinic on Mon - had another possible seizure episode on Thurs evening but it is quite hard to tell given his usual quite erratic head control and jerky movements. Have got both on video anyway. Dreading Monday now. Anyway at least it doesn't seem to be affecting him at all, behaviour wise, he is very lively and happy.

TheDMshouldbeRivened Sun 06-Sep-09 08:11:20

well, if its not on waking I reckon there's a good chance its not IS. Maybe its nothing more than dystonia (muscle jerks?)
Hope so but its great its on video. dd's IS video's are on youtube if you want to watch (she has very unusual asymmetrical one swhich fooled them for a while)

badkitty Mon 07-Sep-09 14:35:39

Well the consultant thought the first episode was a seizure - not sure about the second. Said it didn't look typical of IS but would have to wait for EEG. Not got any meds at moment but she said she would probably start him on sodium valproate (? sp) after EEG. No more episodes yet though.

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