Epilepsy, should we treat the sympton or find the cause?

[matzdad]

My 2 year old son was recently diagnosed as suffering from myoclonic epilepsy. Although the doctors hadn't actually witnessed any of his siezures they immediatly prescribed the drug Eplilim for him - before even carrying out any tests whatsoever. The symptoms were short (less than a second)'spasms'or 'jerks' where he took a sharp intake of breath and his arms shot out in front of him. We had seen these before when he had had a viral infection and high fever. This time they were happening without the fever but following another viral infection, heavy cold and high temperatures. These siezures were happening about 5 -6 times per day when we first took him to the hospital and seemed to be occuring consistantly: first thing in the morning when in his high chair eating breakfast, as he fell asleep for his mid morning nap, as his sat in his high chair for dinner and as he fell asleep in his cot.The consultant started the drug treatment immediatly at the hospital. After a few weeks of gradually increasing the dosage, his siezures were actually increasing and last weekend when we increased the dosage to 10 mg per day they went up to between 20 - 30 per day and were accompanied by a complete lack of appetite, extreme exhaustion and a dribbling part conscious child that replaced my high energy, dynamic little socialite. On Sunday he threw up his morning medicine and we didn't give him his evening medicine. The next day we were to switch to a new medicine. He hasn't had a siezure since but is due to go back onto the 'maintenence' drug again on Saturday.What concerns me is that we seem to have gone onto these drugs without really trying to assess if there is a pattern or underlying cause to these siezures (the CT scan was clear and the EEG 'supported the diagnosis' - although how reliable it is when carried out on a histerical 24 month old with 20 odd wires attached to his head I'm not sure). Is it just me, or does there seem to be a pattern of times where energy levels might be low? A viral infection? Left over symptoms of previous illness? I feel that we should be observing him without medication so that we can see if there is a pattern rather than pumping him full of drugs (the possible side effects of which are really scary), does anyone else have any similar experiences or advice on possible alternative solutions?

My friends 2 year old has just been diagnosed with epilepsy and has been given epilim as well. He only has seizures following diarrhoea/vomiting and they think that it is related to blood sugar levels. Now whenever he gets diarrhoea she has to go into the hospital for monitering- and I think they will review the epilim in a year or so. His EEG's are normal though.

Another friend's daughter has epilepsy which was never investigated. She is now almost 7 and is having about 20 seizures a day. She has been fighting for further investiagetion for ages and has got it now she has proved that her daughter is regressing cognitively. My friend is also worried about the drugs, and whether they are causing the regression.

Having seen her fight- with a daughter with severe epilepsy and the problems she has had I would just say is there any way you could afford to have a private consultation perhaps with GOSH? Epilepsy often seems to be ignored or not treated properly. I would be concerned given the situation you have dexribed, but having had far too much experience with the NHS know that it is the sort of situation that they don't really cope with or deal with well.

Good luck!

BTW there was a recent report in what doctors don't tell you and epilepsy- a recent report on the lancet or bmj said that drugs were prescribed too often and diagnoses were given inappropriately. I would try and get some more investigation.

I agree with jimjams (as usual) if you can afford to go private do so. If not you can ask to be reffered to another paediatric consultant for a second opinion, which they will usually do without argument.

Matzdad, where are you based? I can recommend an excellent paediatric neurologist in London, who does private and nhs work, lovely man. I am also epileptic, have been since a baby of 6 months, and have used epilim, among others, so feel free to ask any questions if you think I can help.

Thanks for the replies. I'm based in Cumbria so a bit far from London. Lou33, is their any rymme or reason to your seizures? Are you able to have an effect on them outside of drug control?

Mine are more absences rather than seizures, though I have had grand mal attacks. As a baby I was on Phenobarbitone. As a consequence I can hardly remember anything before the age of 7. I had many years when I was supposedly free from epilepsy, until aged 21 when I had a grand mal fit, and was told that I hadn't been free at all. Epilepsy takes many different forms. I was fainting on and off, and had lots of twitching movements,especially when tired, but obviously was so used to it I didn't see any problems. I am allergic to Tegretol (carbamezapine), so can't take that (this is usually prescribed for not so severe epilepsy I believe), so Epilim is the doctor's preferred choice. Being female I am very wary of it though, through my experiences.

In answer to your 2 questions, I feel worse when I am tired, I get very "jerky", and often "see" things that aren't there (not visions of giant monsters or jesus type things though!). Not being too run down or hungry seems to help too.

As for controlling it without drugs, that's what I have been doing for quite a few years. I am lucky in that the type of seizures I have aren't that drastic. My oldest was born with Valproate Syndrome (along with other things)because I was taking it during pregnancy. As a result of that I have been reluctant to take it during subsequent pregnancies, or if there was a risk I could get pregnant. I haven't honestly felt any worse without it, and my gp is fully understanding, as was my neurologist. However now I can't get pg again I am considering starting therapy again, if only for the fact I can start counting down from being fit free and start to learn to drive finally. Don't know if this helps you at all!

Matzdad
I am in Cumbria too, although my dd doesn't have epilepsy we did need the services of a paediatric neurologist and we can reccomend the specialist we went to see in Newcastle.
He works for the nhs and also takes private patients(we opted for the private as his waiting list is over 9 months!)
just ask if you want his name

Matzdad see a paediatric neurologist immediately. Get an NHS referal, why should u pay? Just firmly lean on your GP until u gat what u want