Need advice

[Polzangel]

Saw GP today and he thinks my 20 month old son may be suffering from tonic epilepsy and has referred us to peaditrican. I don't know what to do or think as going to be while till I know but has anyone or anyone know someone that been diagnosed with epilepsy where there entire body goes stiff, head goes back and mouth open making groaning noises or screams. I know my son still may not have condition but so worried

[gillyhan68]

My daughter (14) starts like this but she then shakes as she has tonic clonic seizures. First thing our consultant wanted was video footage on phone. Also u need to keep a diary of these events, covering before, during and after. It is very scary I know and seems an age before you find any definite answers. Hope this helps, keep strong x

[Polzangel in reply to gillyhan68]

Guess so but his don't happen that often and literally are out the blue so not sure how I will even get video footage. I have started a diary though. I know it's the process but I just don't know how I am going to sleep unless right next to him as he isn't even 2. Just found myself watching his every move and always on edge in case something happened

[gillyhan68 in reply to Polzangel]

I was the same as Beth mainly has seizures during the night. We use a baby monitor to alert me of the noise and have our laptop webcam set to record all night long using some free software (obs) from internet. I then review the footage next day and anything strange I record with my phone to show consultant. Hope this is of some use x

[Polzangel in reply to gillyhan68]

Thank you I will look into doing that. We are currently in a and e about to be moved to peads and so scared. My boy had another seizure at 2am this morning

[gillyhan68 in reply to Polzangel]

Oh no. The only positive I found when we were admitted to hospital was Beth was started on meds after being fobbed off for months. Keeping u in my prayers x

[Polzangel in reply to gillyhan68]

Thank you I am expecting to leave with no answers too

[elsieadams]

Have your doctor refer you to a neurologist as they are specifically trained in all areas relating to brain activity. They should be able to diagnose whether it is epilepsy related through a series of tests such as a C.A.T. scan E.E.G. test and or an MRI. That is how I was diagnosed many years ago.I know it is very scary for a parent to worry about this especially such a young child. Many prayers for you all.

[Sharveena]

Can i eat epilim 200mg tablet after drinking pepsi