Long shot but ....epilepsy medicine

[JellyBaby26]

I really doubt anyone will reply to this but L here goes.

Dd is 10 months and is undiagnosed but suffers from badd epilepsy with focal tonic seizures , myclonic jerks and infantile spasms to name a few.

She has recently been put on keppra. Her initial small dose was OK and her jerks completely stopped but her sleep deteriorated and has got worse over the week. Now on amother increase she is almost refusing to sleep and she's jerking again. She woke at 3 and hasn't been back to sleep yet. I'm dreading the day.

Has anyone ever used keppra? I haven't read great things about it online.

I just want my poor little girl to be comfy and happy which she quite apparently is not!

I asked about the keto diet Las time and he said it was a reasonable suggestion but as it's not palatable to try the other meds first.

I would like her to have another EEG as it's been a long time since her last one to see how it has changed. I did ask last time but I can't even remember what he said. I always take a notepad etc in with me bit he is so medical I struggle to keep up.

Our next appointment t is in July and I will be asking serious questions about development. At first we weren't sure how long g she would live so it was about making her comfortable etc bit she has shown such strength and willingness that it's clear she's here for the long run!

Dispite me saying she's like a newborn she is making improvements now and is so different to how she used to be but there's low muscle tone, poor head control (although I think this is down to clonazepam as before she started on this she was doing quite well), she can't focus, can't grab or touch things etc. She is eating purees though despite still having the tongue the rust reflex.

Thank you for all your knowledge! I am considering writing a letter expressing my concerns etc especially as we aren't back for 3 months. Feels like such a long time away!

Dd was going to be put on ketogenic diet to help hers but for various reasons it wasn't suitable. Epilim, clobazam and topiramate were what we ended up with.

Sending huge hugs jelly

I have my daughter's consultant's email address - he's pretty good at replying and if you email him concerned he has 'squeezed us in' a few times, where's his secretary will tell you that you can't speak to him and there's no appointments for X months.
Are you getting much help in terms of therapy, physio, OT, Portage etc? We've really struggled to get any help with development. We pay privately to go to Snowdrop in Devon every 6 months, and DD has come on leaps and bounds since we started there. I think having seizure control and particularly getting rid of hypsarrhythmia is so key to development though, you need to get that in place first, and try to find something that controls seizures without making them too zombiefied. I know that's not always an achievable aim.

We recently moved and are under a new nhs trust and they have been fantastic. She has physio and OT fortnightly and I met with portage this morning. She said the waiting list is v long and its likely to be September but thats probably quite good really as I'm due my second in 7 weeks. I just hope and pray he doesn't come out the same.

She also got measured for a lycra suit last week which will be interesting.

I could probably guess his email address they aren't too difficult are they...
He is usually very good and does make us feel like a priority some times. That said I've been trying g to get hold of them for 8 days now with no luck.

Which hospital are you at?

Bristol Children's