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