No where to go

[DavidW1]

My daughter was diagnosed with epilepsy at the age of 4 and is now 8. She originally started with night time only colonic tonic seizures which were more a less one a month. As she has grown older she has developed severe learning difficulties and has become aggressive and violent , during these episodes of aggression she doesn't seem to know what's happening. Her seizure type has changed to very frequent absence seizures and some focal seizures. She is now on eplim and lamtrogeine . I am pretty sure that there is more to it than just a simple epilepsy diagnosis but the consultant seems although helpful underwhelmed by our plight. We have sought support from the GP but have none as they refer that we should be discussing with out consultant , which we do. I have joined this to see if anyone has had similar experiences and has any guidance to offer. This condition and its side effects are so upsetting and I cant bear to watch my daughter so distressed.

[UnwelcomeVisitor]

Hello

I am sorry to read of your daughters health

The advice that I would offer to you is to ask your GP to ask for a second opinion from the Great Ormond Street Hospital for Children in central London

Here's wishing you well

Richard

[zippytiptoes]

Hello David, although I cannot offer a solution, I can offer empathy as I posted a similar post last week. Our daughter has had absence seizures for 6 years and they have never been controlled with drugs. At our request, we were reluctantly referred to GOSH who, after an initial visit in January this year, never got back to us about repeat tests and appointments. We are left without anyone overseeing our daughters care and are feeling lost and uncertain. I empathise about the behaviour and have on occasions wondered if it was more than just the epilepsy. Our daughters aggressive outbursts cast such a shadow on our day to day living. It can sometimes be like walking on egg shells. Which area of the country are you in? It's an awful feeling, feeling you're not able to sort things and support your child in the way you want to, so although I can offer no advice, I sincerely hope you are able to find someone and a way to improve things for you all. Best wishes.

[rofernandezscarafia in reply to zippytiptoes]

have you tried a VIDEOENCEPHALOGRAPHY OF 72 HOURS to be certain if all the seisures are real , mixed with seudocrisis and identify the exact place of the brain where the seisures start? It´s essential for the proper diagnosis the choice of medication FAE and the steps to follow

just the opinion of a mother who is doing her best

have a nice day

[pmag_82]

Hi, has her Doctor looked at the possibility that the aggression is a side effect of the medication? As a child I took epilim and in the end it affected my behaviour to such a degree, without improving my seizures, I had to come off of it. Once the Epilim was out of my system my behaviour dramatically improved and my parents couldn't believe the change in me as a result of the medication.

[paultreetop in reply to pmag_82]

My son is 4 half diagnosis epilepsy with vacancies as well before the medication he wear a nice little boy but 3 months on medication he's nasty agressive

[Hidden]

Get a full diagnosis. At that age your daughter can be admitted to hospital for intensive monitoring. She gets to wear the headgear for a few days. They'll monitor her 24 hours. There's always a nurse watching her. The child's seizures are filmed too. I had it. They found the cause and the answer. I was given a new life.