Hello Everybody - I'm new

[NicksN]

Thank you for letting me join this forum. I dont have epilepsy myself, although I did have petit mal/absence epilepsy as a child but grew out of it. When my son was 10 we suspected he also had the same condition, but before he was finally diagnosed he had tonic clonic seizures. The first was in Luxor temple in Egypt whilst we were on holiday - scary!
A year down the line his seizures are still not under control - atm we are losing faith in his consultant - not because she has not yet got the medication under control we realise that can take time but because she never seems up to speed with whats been happening with him and more so because it is a fight every time I want to speak/get advice/support/info from her or her secretary.
Sorry I sound like a moaning minnie - I'm not, I am just a frustrated, tired and rather scared mum

xxx

 

[Fedup]

NicksN

You are very welcome to C.W.E. its ok to be frustrated, tired and scared most of us here have already been there, so ask the questions and we will try help.

 

[N Sperlo]

Just jumped in yesterday, myself. There are a lot of helpful people here ready and willing to help.

It has been great having neurologists that jump to help me whenever needed. If its an emergency, there is always one there, while if its not, I never have had to wait more than a day to get the minor kinks worked out. I also had the best pediatric neurologist in the area, so I have always been lucky.

 

[NicksN]

thanks for the welcome guys, my son had another seizure this morning, hence the reason I havent been back. Seems they are getting worse rather than better.
Feeling very cross with the lack of support we are getting from his doc, Monday morning will be assertive mummy time!

 

[Crash]

Good luck on monday!!! and welcome to C.W.E!

 

[marths]

a big welcome to CWE. Glad to have you.

Sorry for all the grief that your going through not finding a good doctor who would support and give you the much needed best treatment for your son.
Believe me it is not an easy journey for some of us here.the folks on here are very sweet,helpful and informative so you are in good company.
GOOD FORTUNE ON MONDAY.KEEP FIGHTING,YOUR SON IS WORTH IT!!!!

 

[JaneC]

Hi Nicks, I'm lucky in that my daughter's seizures have been fairly straightforward to control. Otherwise I think I'd have to do a lot of shouting at the health service. Sadly, it seems if you are not prepared to make a fuss they'll just leave you to get on with it. We directed a major hissy fit at my daughter's school recently. Worked a treat

 

[Crash]

Im really glad it worked for ya JaneC,sometimes ya gotta do what ya gotta do:clap:

 

[JaneC]

Oh, I cut my teeth on the mental health service earlier in the year Crash, when they declined to help Rosie. I'm getting good at it now :rock:

 

[N Sperlo]

Good luck today. I hope everything works out for the best. There are times the seizures get better and there are times they get worse. Until they are 100% controlled, this will be the way of things.

I'll keep you in my thoughts today.

 

[Nakamova]

Hi NicksN, just wanted to add my welcome to the others'. I hope you have a good appointment with the neurologist. If you are feeling frustrated with her though, you shouldn't hesitate to find someone new who can be more responsive.

 

[jyearta]

Hi,:hello::hello

I think you are doing what most parents would do for their child.

I agree with Nak. If you don't feel this Neur. is listening to your concerns find another.

I know it's hard to find a good one. I have around 9.

Just don't stop till you get answers.