New to this

My 12 son had his first seizure 5 weeks ago and his second the other day.today am on knife's edge awaiting a third. He waitied seven hours on docs giving him madazalim? To bring him out of the one he had on wed.I worry about the impact this is having on him physically and mentally.asheis still in the first stages the docs are reluctant to medicate him til further results of tests are available.. Any advice would be very welcome x

Last edited by

7 Replies

oldestnewest
  • Hi Mijen i can identify what your son is going through. I started having seizures at the age of 11. About 1 every 8 weeks.

    My advice would be for your son to live life as normal as possible.

    This is what I did and I am now seizure free.

    The only thing that has stayed is the discrimination but that's the world we live in.

  • Hopefully I will get some answers soon which will allow him and me to cope.I just don't want to let him out my sight as he doesn't know who he is when he goes into one let alone make his way to safety x

  • Bless you, you must be worried sick. I was diognosed after tests with epilepsy in 2008 at the age of 28. My family were worried as you are. To begin with it felt like there was no light at the end of the tunnel but once they found a medication that didn't give me to many side effects and controlled my seizures I got my old life back & today I live a completely normal life. The only thing is I am very careful as my trigger is tiredness so I go to bed when I get too tired or I leave early if I am out. Oh and of course I tend to have showers or if I have a bath I make sure my husband is near by. Good luck & keep pestering the doctors until they help you further xx

  • Many thanks,just so on edge about the impact this may have and although hopefull he does get the relevant help soon.I can appreciate investigations need to take place but by goodness everything seems to take so long x

  • I was 14 when I had my fist couple of seizures. Didn't have them too often to begin with - maybe one every 2-3 months, so didn't go on medication until it got worse when I was about 18-19. of course the reason for it getting worse was probably that I was getting less sleep (tiredness is my main trigger too) and possibly also increased levels of alcohol. Took a while to find a suitable med, but I was seizure free for 7 years until last year when I had 2.

    However, if I understand correctly from your post your son was fitting for 5 hours? This is not a very common occurance and generally it is said you should call for an ambulance if it goes on for more than 5 mins. At this stage though, I think oyu need to just take as much advice as you can from the doctors as they will know more specifics about your sons condition than we do.

    All the best,

    Amy

  • My son is now 14,had his 1st seizure at 12 & was diagnosed after I videoed the seizure & an EEG,scan was normal until they looked the 2nd time!

    I empathise with you about the constant anxiety! I am still there 2 yrs on as his is getting worse,not better & is impacting him emotionally ,being a teenager! BUT you have to let them live as good as life as they can,he has a paper round,obviously with supervision,but does it ,his friends have been briefed at school about his condition,he wears an Epilepsy necklace & card in his wallet,has ICE contact for me on his phone

    Time does help,you let them go a little bit more as the days and weeks go on & honestly it will probably never leave you ,but you learn to live with it & find the strength you never thought you had!

    Good luck with diagnosis & meds to get good control

  • Claire,

    I wondered why they gave your son a second EEG? I only had one (and a single CAT scan) when I was first diagnosed (about 15 years ago) and have often wondered whether they could do either of them again and might find anything they didn't find before. Nobody has ever suggested it and when I have metioned it to doctors they don't seem bothered.

You may also like...