How do you find a good Epileptologist?

[zippytiptoes]

Our 7 year old child has difficult to treat epilepsy (absence seizures but 100's in a day). We are at the end of the road with our neurologist. Our GP says if we can identify a good Epileptologist he will refer us, but other than googling names, I feel I need some recommendations.

Does anyone have any suggestions please? We are happy to travel but live in the North East, so Leeds, Manchester, Newcastle or Scotland would be good.

We'd be really, really grateful for any help or suggestions as we're just stuck at the minute and it's having a huge impact on our family life.

Thank you.

[zippytiptoes]

Thanks. We were on the road to the ketogenic diet a couple of years ago but just felt it was too difficult to commit as we are vegetarian (which can be difficult enough with small children) and we have another child. We just couldn't cope with the prescriptive nature of the diet, but thanks for the suggestion.

[0161harrison]

Hi my son has the exact same issue, he was have so many absent seizures a day, about 3 weeks ago he was in and out of seizures all day, and I felt at my wits end! Then about 8pm it calmed down, by 8.30 he had a big seizure, we called an ambulance and was taken to a n e, the the absence seizures started again, at about 2.30am we was sent home and told to call his consultant in the morning, at about 7.30am he had another big fit, as it didn't last more than 5mins I decided u would wait till 9 to ring the consultant, they managed to get us in at 11, while in the waiting room he had another big seizure, during the times in between he was in and out of the absent seizures, the consultant, then decided it would be best to put him in rescue meds, he said if someone is having more than 6 absence seizures in a hour it's called cluster seizures and should be given rescue meds, is this an option that's been given to you?? Also his meds have been changed from lamotrigne to keppra!!

[zippytiptoes in reply to 0161harrison]

I'm really sorry to hear about your son and understand how worrying it is to experience. We've had similar circumstances over the last few years. She has rescue meds (Medazolam) but we've never had to use them. We have recently requested to take her off all meds (she has tried12 over the last 4 years) as her behaviour was terrible. The neurologist didn't agree it would be the meds but having been in the same position many times, we firmly beloved that the meds, coupled with the frustration of having so many seizures was a factor. Since being off them, her behaviour has altered. She is far less aggressive and appears 'less medicated'. She is clearly frustrated though at constantly missing snippets of the day and we need a way to make this more manageable for her and us as a family. We really struggle because the impact is not so visible or apparent to others, so it often appears to people that we are just worrying or not coping well,when in reality we are strong, sensible people who have just run out of solutions!

I hope you find some answers for your sons situation soon x

[tommydmcnally in reply to zippytiptoes]

Have you thought about trying CBD oil?

[Hidden]

Hi,

Regret I am based in South Africa, but perhaps Epilepsy Action UK or one of your local Epilepsy Centers has more information in this regard.

Try them first.

Regards,

Les

[EpilepsyInst Partner Epilepsy Research UK]

Hi zippytiptoes, we are back in the office on Monday 4 Jan. Do give us a call to discuss this if you want to (020 8747 5024). Best wishes ERUK

[zippytiptoes in reply to EpilepsyInst]

Thank you. That's a big help.

[philprice216]

Hi we are having the same problem exactly a friend of ours recommended the alder hay hospital in Liverpool, we have had our GP make arrangements for us to go there instead of the neurologist we went to see originally.

I will ask my wife for the doctors name if this is of any comfort.

[zippytiptoes in reply to philprice216]

Thanks so much Phil. That would be great. I'd really appreciate that. Do you mean you were having the same problems in terms of your child's behaviour/resistance to meds/or running out of options? I'd be interested to know. Sometimes we feel

Like we're the only ones who are stuck! Thanks again

[smartbomb in reply to zippytiptoes]

Hello. Did Phil price return to you with the name of an epileptologist at the alder hey please? If so would you let me know his name and provide any other contact info you have? Many thanks

[zippytiptoes in reply to smartbomb]

Hi Smartbomb! No, I didn't get a reply but forged ahead and have just recently been referred to Great Ormond Street. If I can help at all, just shout

[smartbomb in reply to zippytiptoes]

Hello and thanks very much. I am actually trying to find an adult epileptologist. I am pleased you are in good hands. Kind regards