Funny Turns

[Clarinet60]

DS2 will be 3 in May and for a few weeks now he has been having episodes that look like ecstatic seizures, which usually come on when he's excited. These 'turns' last for about 30 seconds, his hands go into a gripping spasm, he breathes heavily and grunts, he dribbles and if he's standing up he falls over. It's a controlled fall usually, and speaking to him will bring him out of it sooner.

Has anyone else heard of this? I'm taking him to see a GP next week, but I don't hold out much hope of finding out anything useful.

would you make the hike to london?

Thanks Hulababy.
Looks like a hike may be on the cards. I'll give it another week.

will you let me know what happens? Have been wondering about you all.

can't they do anything for him until the results of the EEG ? you must feel so frustrated. Poor little lad hurting himself

Hi Droile

I see you seem to be going down the 'epilepsy' route at the moment and hopefully you will have some answers soon that will enable your son to receive the most appropriate treatment. However, just in case this does not turn out to be the answer, you may want to have a look at the STARS website, as some of what you have described can also happen with Reflex Anoxic Seizures (my 5yr old son has suffered with these since shortly after birth, albeit they have reduced to almost negligble this past year or so)or some of the other conditions covered by the website.

Hope this is of some help.

butterfly

Apparently not. Every time I ring and ask for advice I'm told to wait for eeg results. They haven't even given us a new paed yet - a locum will be in place 'soon'. Gp's are worse than useless - they've referred us and that's their job done, it seems.
Thanks lou, I'll let you know.
He had one halfway down the stairs this morning, which wasn't the best of places. luckily I was walking right behind him, but I can't always be right there. Yesterday he fell straight onto his face at the childminders during a seizure, and that was from a kneeling start - imagine if he'd been standing.

Thanks butterfly, I'll have a look at that.

Oops, negligible even .

Can you hear him breathing during attacks, butterflymum? Ds's breathing is always audible.

Had an eventful weekend - DS was rushed to A&E on Saturday after a bad fall. He bashed his head and was vomiting and drowsy, so we called an ambulance. To cut a long story short, his concussion settled after one night, but they kept him in (and me) for two nights because he kept on having seizures. The good thing is that numerous doctors, nurses, etc, witnessed the seizures, so at last we have a firm diagnosis - it's epilepsy, and he has started taking sodium valproate (Epilim). We have outpatients appointments booked, and an MRI scan looming.

We were in a side room on our own because of his brother's chicken pox. That was one good thing. Unfortunately, the isolation meant that he couldn't play in the toy room when he was feeling better, and I had to keep my distance from everyone else too in case I infected anyone. We were both stir crazy by the time we came out yesterday, but I'm glad things have been brought to a head, as it were. The ambulance trip and the drowsiness were very scary.

bloody hell droile!
sounds v scary, but am v glad he has been medicated (same meds i use). You should satrt to see a difference soon x

Oh, good. My sentiments entirely!

OMG droile! How scary for you. On the upside, at least he's now on medication which should control his seizures.

Sorry I didn't get back to you re the eeg. Our consultant rang us last Thursday night to say she had the results, and dd1 has a "focal" epilepsy rather than just the absence seizures. She had a slot free the following morning (was impressed at the speediness of it!) so we went to see her then and dd1 has now been started on Tegretol/ carbamazepine. She also has to have an MRI scan but we've no idea how long this will take to come through. Since she started taking the medication last Friday, she's had two very small (hardly noticeable) absence seizures, one on Saturday and one on Sunday, and since then has been absolutely fine.

I really hope the Epilim works for your ds (that's what DH is on too). Hopefully this will be the start of a normal life again.

Droile - sorry to hear about your awful weekend - I hope the medication helps.

Thanks everyone.
He hasn't had a seizure for 2 days now, so fingers crossed.
It's his 3rd birthday on Saturday - what a week!

Hi Droile
Best wishes to the birthday boy for tomorrow. Hope you all have a lovely day

Thanks, both, it's lovely to have these messages.

He didn't feel well and said 'I don't like my birthday' (the chicken pox has struck and is irritating him), but he liked his presents. Still fit-free.

A week Bethron, that must have been murder. Glad to hear your little boy is doing well now.

throw a little party to celebrate being a week fit free droile, that's lovely news!

That's a good idea Lou. When he feels better, I think we will.

when do you get all the results back?

They're still chasing up the results of the 24hr eeg. We have consultants apptmts in June and MRI God knows when.
tbh, we're worried about the effects of epilim on his young brain, especially after reading the Epilim & developmental delay thread from last year. He seems really listless and as the chicken-pox came out last Wednesday, should be feeling better by now.

bless him, please keep me updated, you know where i am if you need me x

I spoke too soon - he's having seizures again, although they are very brief.