We're new here....

[SirAlan]

Hi,

Alan and his 12 year old daughter here. She has congenital JME inherited from her mother and which I discovered a full 2 years before the onset of fits, which I would have expected at about 13. We're on Keppra 1000mg daily. We just reached the full dosage last Wednesday. I discovered the diagnosis while driving through trees etc. I noticed her discomfort and realized what I was dealing with immediately. 24 hour EEGs showed the onset of morning and evening activity and thus a need for medication even though she's only ever experienced slight myoclonic jerks as she falls asleep etc and the discomfort of flashing sunlight as we drive. Under treatment with Keppra she found that the stroboscopic trigger disappeared as did the myoclonic jerks, so, so far so good.

Just to clarify....her mother, 45, has serious non medicatable, worsening JME. We've been together for 19 years and in that time her epileptic pattern has grown to include 2 daily periods of absences (petit mal)....9-11 and 15-17 every day like clockwork. She also has daily myoclonic seizures and GTCs (generalized tonic clonic or grand mal) with some tonic night seizures. I wake up if she stops breathing etc. She also has what we used to call CPS or clonic partial seizures but which we now call focal siezures with loss of consciousness, and i suspect her of having psychogenic seizures, or clonic partial seizures without loss of consciousness. There is also an argument for PNES seizures here as her EEGs sometimes don't match what we see.

She now takes more medication than ever, and is having more fits than ever. She takes lamictal, rivotril, stesolid, frisium and now ritalin (!!), betablockers and oxycondone (!!). as well as buccolam/epistatus to stop her fits.

I'm not sure I trust the system here in Norway. They don't have the best track record with regard to other neurological conditions like MS and they are rather sure of their own excellence, if you get my drift. So I'm really wondering if I should move back to the UK for my daughter's sake and where I would get info on where best to seek treatment. I'm British and my daughter will automatically get citizenship in the UK if i return.

What's the best NHS institution in the UK for getting proper advice about epilepsy?

Thanks guys. Welcome to my world

[UnwelcomeVisitor]

Good afternoon,

I have read your very sad story of your nearest and dearest.

Unfortunately epilepsy can be inherited from ones parent in some cases.

I wouldn’t like to give advice on this one as uncontrolled epilepsy is quite simply uncontrolled.

However it is a fact that the UK has got the very best epileptologists at the National Hospital for Neurology and Neurosurgery in London. This is where people can referred to who live in many parts of England. In your daughters case due to her age she could be seen at the Great Ormond street for Children which is just around corner to the National Hospital

Whatever you decide I hope that a little something can be done for your wife and daughter.

Kind regards

Richard

[SirAlan in reply to UnwelcomeVisitor]

Thank you Richard. That was good advice. Although I've never had epilepsy it has certainly run my life for 25 of my 57 years (My first wife had jme which 'disappeared' when she was 25).

I'm sure I'll have further questions you can help me with given time.

The prognosis for my daughter is that it won't manifest as badly as my wife's. She seems to have a single centre while my wife has at least 4, and if we can medicate so she never has a GTC I think we can keep it at a lower level.

I'm sure you too sometimes need the kind of virtual cuddle you give other people here. Thanks mate.

[UnwelcomeVisitor in reply to SirAlan]

Certainly if at anytime you think that you would like a chat I will do my best.

Richard

[AmyBadd]

Hi Alan

I’m so sorry to hear about your situation. I have JME, which is probably inherited from my mother’s side of the family. Luckily I haven’t had a seizure for nearly a year now and my epilepsy is well controlled by sodium valproate (Epilim). Has your wife been on this medication? It’s not good for younger women, as it can cause foetal abnormalities, but it is the best drug for JME overall.

I’m shocked to hear how many medications she is taking. From what my doctors have told me, more meds are not necessarily better. Also a few of them cause symptoms which might be like absence type seizures. Could it be that she is actually having these side effects at the times you indicated? Is it a certain amount of time after taking medications? I am no expert whatsoever, but I really would consider going to see another neurologist. I am in Sheffield and we have world-leading neurologists here, too.

All the best,

Amy

[Lj08]

Come back to the uk and tell your doctor you want more advice for your wife and daughter from the UK, London do have the best neurologist hospital google them, get your lives back , please, good luck with everything thinking about you and your family