Need advice: Saw GP today and he thinks... - Epilepsy Research...

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Need advice

Polzangel profile image
8 Replies

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

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Polzangel profile image
Polzangel
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8 Replies
gillyhan68 profile image
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 profile image
Polzangel in reply togillyhan68

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 profile image
gillyhan68 in reply toPolzangel

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 profile image
Polzangel in reply togillyhan68

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 profile image
gillyhan68 in reply toPolzangel

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 profile image
Polzangel in reply togillyhan68

Thank you I am expecting to leave with no answers too

elsieadams profile image
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 profile image
Sharveena

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