Severe hard to control epilepsy... anybody got a child going through the same thing?

[JakB]

Hi mums netters, used to be a regular here many moons ago!!! We have reached a bit if a crisis point with dd and wondered if anybody had any advice. She has autism, severe learning difficulties and epilepsy which has got progressively worse over the last year. She is in four drugs but it s still not controlled and we ended up in hospital at the weekend as she had gone into non convulsive status... She has a mixture of atypical absences, tonic seizures (in sleep) and drop seizures (she has had some awful injuries). At my wit's end...

[latedeveloper]

No useful experience but couldn't pass this by. My ds has ld, asd and uncontrolled absence seizures which sometimes make him fall over.

sorry if this is too obvious but have you had a recent MRI and eeg?

Sometimes when drugs dont work they recommend a ketogenic diet -could this be a possibility? another poster who used to post as riven has lots of experience.

[JakB]

Thanks so much for replying. Yes we had a 24 hour EEG week before last which showed that dd was virtually in status the whole time. Not good. Awaiting MRI scan and appointment to discuss ketogenic diet next week. I feel as if everything possible is being done but besides myself with stress!! She us off school this work as sorting protocol etc and upped the clobazam for three days

[latedeveloper]

That's really tough. It is good that you feel everything is being done and fast but so scary and tiring for you.

I hope you have some good support around your family at the moment - be kind to yourself and take breaks where you can.

I hope someone with more experience comes along to offer practical hints.

[bigbluebus]

I really feel for you Jak. DD had uncontrolled epilepsy for 4 - 5 months when she was 2 1/2. We were blue lighted to hospital almost every 10 days as even rescue medication wasn't working. SHe had one fit that lasted 3 hours (partly due to the distance we live from main hospital). Each time, they would stop the seizure, keep her in 1 or 2 nights and up the medication. Eventually (after 4 months of trying different meds) they kept her in for 3 1/2 weeks whilst they tried to sort it out. We eventually had an appointment with the neurological consultant from the regional children's hospital, who prescribed 3 different meds which brought everything under control - well to the point where she would only have a seizure every 3 mths or so.
We were told subsequently by another neeurologist that you should never change more than one drug at a time - as you don't know which is working - which makes sense - but we were just grateful for a solution to DD's trauma.

Are you seeing a paediatric neurologist from a regional hospital - or are you just having medication changed under instruction of general paediatrician?

I'm afraid there is no quick fix to complex seizures as it can be very much trial and error with medication - what works for one doesn't work for another. When new drugs are introduced, you have to give them time to see if they are working, whilst often having to wean them off the old medication slowly at the same time. It is all frustratingly slow - but necessary.
Haven't used ketogenic diet for DD, but know of children who have - it is quite complicated from what I can tell - but I'm sure you feel like you would try anything at the moment.
Hope things calm down for you and your DD soon - I know how frustrating and helpless you must feel.

[RogerMelly]

How old is she now JakB? is it puberty related do you think?

My dd developed epilepsy when she was 8yo (she has sld, autism, mod physical disabilities and chronic epilepsy) She has absences and nightime tonic clonics-nightime tonic clonics seem under control atm. We are using epilim, though we use the crushable tablets as the liquid makes her pyschotic! On discussion with dd's specialists they have all agreed that so complex is her epilepsy that they could get it under control one day, but that wouldn't be a forecast and they believe due to her puberty it will be ever changing atm. We are waiting to see a specilist aswell. My daughter is 12

[saintlyjimjams]

Hello JakB, from one oldie to another.

Ketogenic diet sounds a good idea for a trial at least- I know some have had good results with it.

Other than that limited advice :( but I wanted to say hi xx

[JakB]

Thanks so much. Hi jimjams!!! How are things going? Bigbluebus, what an awful time for you. So glad your dd's epilepsy is controlled. We are under a very good neurologist but the bad news is that dd has tried virtually every drug problem going and nothing has worked. Dd's epilepsy started at 5 but was well controlled until a year or ago. Rogermelly, dd is very small and under developed for her age and there may be something hormonal going on as not developing. I feel as if the ketogenic diet is our last resort.

[JakB]

That was meant to say drug combination!!!!! She does not have a drug problem!

[RogerMelly]

How old is she?  with dd they even think the onset of the epilepsy was hormone related as girls have a hormone surge at around 8

[saintlyjimjams]

All going well here JakB. I will keep fingers and toes crossed for the ketogenic diet, I do know people who have had very good results with it. It sounds very tough :( xxx

[JakB]

Hi dinosaur!! :)
We have the appointment for the diet on Friday so fingers crossed it is suitable for dd. Rogermelly, she us 10 but very small for her age. There us also a possibility a chromosomal problem may be underlying everything as the array test has found a deletion on chromosome 1. I haven't it, awaiting dh's results. It feels like a very big year for dd and I am not sure what we are going to find out