EEG results

[jilted]

My little boy went in this morning (7 months) to have an egg to test fr infantile seizures. I asked the technician doing it if she could tell me if they were normal or not but she said no she couldn't. I would have to wait 2-3 weeks for the consultant to get back to me. Is this average? Its going to be really hard waiting this long.
Could she not at least have told me if they 'looked normal?' ??

Waiting is horrible, but it can take them a long time to interpret. Ds has just had a 48 hour ambulatory EEG and the results will take about 2 months!

Good luck.

What kind of seizures are suspected, Jilted? My son had infantile spasms, I may be able to help.

When my ds had his EEG the technician pointed out that he noticed an abnormality as we suspected, but said to wait for the paed to analyse - this took about 10 days I think. There was epilepsy. Second time, about 2-3 years later he had another done. This time the tech said she couldn't see anything but advised waiting for the consultant. Again, same time frame and also agreement with what the tech had said. So it seems that both of them were confident enough in their analysis to give me some info and also, it was correct. Good luck! Hope they told you most babies with infantile seizures don't go on to develop epilepsy. My son was 8 when this started, so it's a different type of epilepsy.

Also I guess it's easier for an 8 yr old to do the EEG, he followed the instructions, a baby can't. Sorry they couldn't give you more to go on though.

Thanks all. Tiny, it's infantile spasms/seizures yes. (suspected) I'd be really glad of any info at all.
I really haven't been told anything about it yet though. (I guess that would come after the results)

Tiny, the main thing in the meantime is I just don't know how to handle him. When I suspect it is happening, he is impossible and won't sit in any position (or lie) he s also a big boy (he is 7 months but looks about 12) he just flings his back and head back ect

I also wondered too as I thought the seizures could possibly cause brain damage?

Did you hear by letter xyz? Hope he is ok now?

Hi Jilted, if it IS Infantile Spasms then ideally you would be seen much sooner than 2-3 weeks (though it doesn't always happen that way) Have you got a follow up appt yet? My son is doing very well now, but it took four months for him to be diagnosed and that was much too long. It is something that you need to get onto.

As for the EEG, the good news is that IS shows a very distinctive, chaotic pattern. Instead of lots of nice, straight lines with occasional spikes on the screen the operative would see lines that jump and spike all over the place. This is called hypsarrythmia and is and the key thing for diagnosing IS. It's generally very obvious so her not immediately hauling in a neurologist is good news.

IS is really rare and can be missed or misdiagnosed, so it might be a good idea to get some video evidence of the suspected seizures and get onto the hospital to chase a bit - time is of the essence.

Please do PM me. I can give you some advice on how to move forward. I know waaaay too much about it and might be able to help you out.

As for handling him, when DS was having a cluster we used to hold him gently on our laps so we didn't restrict the movements too much and stroke him and talk to him by way of comfort. IS can damage the brain, which is why every day is important. We went 4 months with no diagnosis for DS and whilst he is doing really well he is also severely delayed in some areas.

Tiny, is there any way I could send you some video to know your opinion? Or if you could send me any?
When I took him first to the Gp where he had one of his 'episodes' She said it was 'unusual' and he was experiencing 'head drops' and wrote on notes about cerebral irritation? She seemed concerned and rang through to hospital. I took him there that afternoon.
The peads at the hospital were unsure looking at the clips I had taken. The senior one said 'hmm, its not entirely normal', but was not sure if it was is. She sent us for emergency eeg (next day)

At 4 weeks ds had severe bronco and was in kings London ICU on a respirator for 10 days. We thought we had lost him. He did really well after but still has trouble sitting or controlling head when sitting in any seat (highchair, bumbo ect) he can't sit unaided yet for more than about a minute. (he s 7.5 months) I just put it down to him being a big boy and a bit lazy. ( I have 2 other young DDS so his behaviour seemed a bit different)

I can't leave him sitting anywhere really, he will fall onto his front or side quickly. When this 'thing' happens, it s as if he is really agitated. At first he starts wriggling, crying and squirming side to side. He arches back and head pretty violently with arms up and repeats. I try to change his position but it doesn't help.

I was also looking into reflux but he has never had problems feeding or with any wind etc and this seems to happen regardless of if having fed or not.

Oh you poor thing. It's all very scary. Are you on Facebook? I am a member of a wonderful group called The Infantile Spasms Community Support Group. Get yourself on there and upload your video. There are all sorts of people with experience of all sorts of seizures who might be able to help. In the meantime, though, I'd suggest you need to start pushing to be seen. There are people who would tell you to take him to A and E and sit there until you've seen a paediatric neurologist and had an EEG. I didn't do it but I sometimes wish I had. We were sent away 3 times to wait for an appointment. If it is infantile spasms you'll need a referral to a specialist hospital.

Can I ask a couple of questions?

• since the episodes started have you noticed that he has lost any skills? So could he once sit and now he can't for instance?

• when do they happen? Randomly? When he wakes up? Dropping off to sleep?

• are they increasing in frequency?

It's actually Infantile Spasms Community Discussion Group. Shout for me, I'll introduce myself.

Tiny, I will do that later. Thanks.
I think 'usually' they happen in the evening, though he has had them in the day. They have intensified which is why I took him to the GP really.
Some days I think he is happier than others though.

I don't think he has lost any skills per se .
The tech did notice though that he was sleeping with his eyes half open, she asked me during the eeg 'does he normally sleep with his eyes open?' I hadn't noticed this before.
He does get v irritable going to sleep .
When you took your own child, did the Dr's know straight away?
Do you think not all are experienced to know exactly or even misdiagnose?
I am normally in London but am staying with my mum during the summer in Somerset, so he has been seen down here in the local hospital.
The consultant just said when they saw him first that she would 'follow up' in a few weeks (this is before he had the eeg)

DS was misdiagnosed a number of times. Sandifers (severe reflux - he had no reflux at all and no other signs of it), sleep myoclonus (the twitches you get when you fall asleep) etc. We showed videos, nurses and doctors saw the episodes and eventually agreed to booking him for a 30 minute EEG but it wasn't until we saw a paediatric neurologist that we got somewhere. Because DS was physically well they thought it was unlikely to be spasms. We were referred to Great Ormond St by the neurologist 'to check'. We took him in, showed them our videos and the consultant said 'those are infantile spasms'. By the end of the day he was hooked up to an overnight EEG and the following day he started on meds, which stopped his seizures.

The fact that they're increasing in frequency/strength makes me err towards you pushing to get him seen sooner rather than later. I'd suggest that you find out which neurologist you're seeing and call their secretary. Send an email with the video and make sure you tell them about his history and the fact that they are increasing. then keep calling daily until you are seen. If it's going to be a couple of weeks then you need to go to a and e, as I said before. If you're in Somerset and it's possible I'd head for a bigger hospital where there will be a paeds neurologist on call. Bristol maybe?

I'm not given to drama and not trying to scare you but time really is of the essence with infantile spasms. Hopefully it isn't spasms but if I had my time again I'd have worked on the basis it was until I was sure it wasn't.

I should add that although this is scary there are lots of meds and lots of different causes. My son is a healthy, happy, currently seizure free 2.5 year old.

Thanks for all the info tiny. I'll find the fb page. I just popped back in because I just went up to him crying. He is tired and had been put to bed but still awake but I picked him up and rocked him a bit and his eyes rolled up to his head. That's not good is it? He was still awake when I put him down though. Is this connected or am I over reacting?
??
I'm glad your son is doing so well. Have te seizures had any effect on his development or is he fine?

Eye rolling could well just be worried mama watching him fall asleep when eyes do roll back. It could be seizure related too.

DS is severely delayed in language and cognition - 10 month level at the moment (he's 2.5). So he can't talk at all but his motor skills are all caught up. We suspect some learning and behavioural difficulties are in the post but it's hard to tell when he's so little and can't talk.

The outcomes for IS are so, so varied though. There's usually a cause behind it which influences the outcome so please don't think that my son's story will be your son's too.

Have you called the hospital? I really think you should.