Son with hemiplegia

[10krunner]

Hi,
My 16 yo son was diagnosed with mild right sided hemi when he was 2. He's coped pretty well really and had a full statement all through his education. He left school this year with 7 GCSE's and things have being rolling along fine. In the past 3 years he's had episodes of "sparkling lights", loss of balance and impaired speech. This has happened approx. 4 times, the last time ended up with us taking him to A&E and he was admitted for 5 days. He's had a CT scan and an MRI scan which have showed no new brain damage and consequently a neurologist he was refereed to talked about low blood pressure or migraines. They said they didn't want to put him on migraine medication because the side-effects were worse than the actual symptoms and while its not happening too often they didn't want to do that. He was signed off by the consultant at the hospital. Yesterday, he was at his grandmothers when he found he couldn't speak. He says he couldn't thoughts in his head straight and couldn't verbalise them (almost like a mini stroke or something). I am now at a total loss. Obviously we are making an appointment for him at the GP but what can this be? We know his scans are clear from when he's had previous "episodes" so I'm not sure where they/we can go from here. Does anyone have any ideas where/who I should speak to?

Sorry this has been so long.

Thanks

epilepsy?

no NMC, that would have shown up on the MRI scan and he doesn't have fits or seizures.

no it wouldn't. MRI looks for structural abnormalities. An EEG looks for seizures and they don't always show up.
A simple partial seizure would have weird effects like you have described.

welcome to sn 10k

have no direct experience (except that nmc knows her stuff on this both as a Mum but also through her phd IIRC and she is very clever indeed )

hope you get answers from your gp soon

I'm not clever. Just opnionated

hiya 10k.

DD has mild left side hemi,she had blank/absence episodes when she was a baby,but the EEG didnt show up anything,she hasnt had an MRI,we didnt want one cos she was having so much problems and the paed said it would tell us where her brain injury was but not much else and we didnt want to put her through it.

she has loss of balance on occasions and falls easily,not much help to offer im afraid except to say i understand your concerns and hopefully your GP will refer him back to a specialist who can help.

You need to go back the neurologist and get demand an EEG. Can't believe they didn't do one anyway.
I'm dreading DS getting older, all help seems to fade away
Please bear in mind that he will probably need more than one EEG - my DS has a fine habit of being spectacularly well during his. Hurumph.

I hope you get answers soon, and your DS is OK.

dd's EEG always shows eleptifom spikes cos brain damage always does. Does make it hard to spot epilepsy though. But then she has obvious seizures. Simple partials are a bugger to spot.

Quick hijack NMC what does it mean when they say 'some sharp waves noted in right posterior region'?
This was in DSs last EEG report. When neurologist discussed it with us she told us that the EEG showed some things that tie in with DSs brain damage (is that what it is?) but she didn't go into detail. Didn't get the letter till after last appointment, so I couldn't ask her to clear it up. Any help gratefully received - will not hold you to it, I promise!

it means the damaged bits are mis-firing. If the spikes are large then they could become a seizure.
I've forgotten how old your little one is but epilepsy rarely develops before 3 months. After that, if there's any brain injury the potential is there unfortunately.
One thing I learned the other day is that an area larger than 6 cm square must be mis-firing for an EEG to pick it up as its such a crude tool.
So the sharp waves are mis-firing. They may remain the same and not be a bother or they may increase or synchronise and you'll see a seizure.

Ah, now that makes complete sense, he has lost his upper hind brain. It actually says 'some moderate sharp waves.....So, that sounds OK to me and I think that is what she was reffering to as being in line with the brain damage. Wish they'd write letters in the same language they speak to me in. 6cm sq? That sounds big, DS has only got a little head!
DS now 19weeks old so entering the IS age now .
Thank you, mind at rest now.

well, hopefully he wont get IS but if you see any odd movements - and dd's never looked like the classic spasms (I can link you to a video of them if you want) - go straight to A&E and say infantile spasms until some bugger listens.
They are generally on waking. dd's started with one or two weird movements on waking and within 2 weeks were 40 or 50 spasms every time she woke

Thankfully (and unlike most) we have a lovely neurologist who I can call at any time and direct access to the childrens hospital. They already know DS quite well there and I think, ly, expecting to see him again soon. Don't think I'll have to fight with anyone, thank God.

It is my main worry that I will miss any IS, as DS soooo twitchy anyway, and we are so used to it. He is an absolute treasure on waking tho, smiley and laughing and not jerky at all, so If they come at the right time, I hope we'll be OK.

Thanks for all the messages. I'd never heard of an EEG before. I've googled it and it does sound like something DS should have. They tested his heart too with an ECG and that was totally normal. I shall keep this information to hand and will mention it WHEN we get another appointment from the neurologist. You wouldn't believe the hassle I had getting him the appointment last time and now I'll have to go through it all over again

I'd like to say I'm amazed but I'm not. Some neurologists aren't that great.