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  1. #1
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    childhood seizures, epilepsy or what else? - what to do?

    Hi everyone,

    dont exactly know which room to put this into, and I guess its more sharing than asking for any help.

    I mentioned it briefly on another thread.
    Quote Originally Posted by kingwilly View Post
    my son has just had 4 or 5 fits in a week, first time ever, doctors aint sure wot it is yet.
    now its not full on fits body shaking etc. its just his face and cheek goes into small convulsions, and he dribbles a bit, he is aware of it the whole time, and it only lasts 10-20 seconds.

    nonetheless not good.

    he lives in melbourne, which makes it hard for me being here, but i'm headed home later this week.

    My sister and mum are both nurses, so they've spoken to doctor friends, they both say it is serious, and could be epilepsy, an infection on the brain, or possibly even a tumour.

    nothing particularly pleasant.

    it seems to have just started this week, he had one yesterday, 2 or 3 the day before, and possibly one or two at school and at my mothers house, but he didnt tell anyone. (but he is aware of it happening).

    They took him to the childrens hospital the other evening, but the doc couldnt say what it was, he is now booked into a paediatrician surgeon (whom my sister says has an excellent rep.)

    Does/Has anyone else here experienced similar things??

  2. #2
    Days Work Done! Norton's Avatar
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    One of my nephews had facial spasms. So long ago I don't remember the cause but it was cleared up. When these things happen our tendency is to think the worst but usually we find it is not as bad as we fear.

    Really hard to say what your son's problem might be but sounds like he is in good hands with your sis and mum.

    Here is a link worth looking at.

    Facial spasms - WrongDiagnosis.com
    Whenever you find yourself on the side of the majority, it is time to pause and reflect.

  3. #3
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    Quote Originally Posted by Norton
    One of my nephews had facial spasms. So long ago I don't remember the cause but it was cleared up. When these things happen our tendency is to think the worst but usually we find it is not as bad as we fear.
    sort of human nature i guess.

    good to hear it got cleared up.

    thanks for that link mate!

  4. #4
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    ChiangMai noon's Avatar
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    Quote Originally Posted by kingwilly
    an infection on the brain, or possibly even a tumour.
    My best childhood friend started fitting in his early 20;s.
    he was misdiagnosed as an epileptic.

    unfortunately it was a tumour (cancerous) on the brain stem.
    He died a year later.

    Get as many opinions as you possibly can and good luck.

  5. #5
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    my boy is 5.

    ^ that's worst case senario, i guess, had already considered the possibility. i'd pray, but i'm not a believer, but believe me, i'm otw there ASAP, and we will go to every doc.

  6. #6
    The cold, wet one
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    I'm sure your family & docs have already ruled this out, but he hasn't got a high fever, has he? Febrile convulsions are common in children.

    Good luck, KW. My thoughts are with your littl'un.

  7. #7
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    no fever, no new medications. i'm trying to organise my flights back earlier, but waitlisted at this stage.

  8. #8
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    Wow KW - I have no info that will help you, just my thoughts and prayers.

  9. #9
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    kw, I'm sory to hear that, but I'm sure things will get better soon. I started having grand mal seizures (convulsions) when I was 2 1/2 and they started out of the blue. I had them until I was about 11.

    I was very fortunate as my hometown has a fantastastic children's hospital. I had EEG's right away and I was put on anticonvulsants. Sometimes one, somtimes two at a time. Back in those days, late 60's, early 70's there weren't many options.

    I was lucky in a way that the convulsions would only happen in my sleep, once I was in a deep sleep. I started to see a neurologist for many years and after some (more) tests, they discovered a growth of tissue on my skull. It was a jumble of nerve tissue anad I had surgery to remove it when I was 8.

    I had a couple of convulsions after that and my last one was when I was 15, 25 years ago now. I'm completely off medication and happy about it.

    Now, the diagnoses and treatments are far better. The medications are very strong and have some nasty side effects. He should get an EEG, if he hasn't already and maybe a brain scan if the EEG isn't conclusive.

    His lack of fever can rule out infection. Besides the EEG, he could have some blood tests to se if it's a chemical imbalance. Keep us posted and good luck.

  10. #10
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    Off topic, why does my location say Patong Beach? I didn't put that in.

  11. #11
    The cold, wet one
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    ^ It will keep changing every few posts until you get to 1,000

  12. #12
    I am in Jail

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    Really sorry to hear this, KW. I will pray for him. What's his name?

  13. #13
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    Sorry to hear KW, i had a fit(once in my life) when i was a baby the night i had the MMR jab!
    Hope all is well soon, good luck.

  14. #14
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    my first thought was also vaccination reaction.

    Best wishes!

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    Sorry to hear about your kid KW. My mother has had epilepsy all her life. Regular petite mals followed by grand mals on occasions. Shes been on medication for years, and had more scans than i can remember. The latest thing the docs believe is triggering the seizures is coffee (god knows how they came to that conclusion), and since she`s cut down to two cups per day, she has been much better. Everybody's different i know, but it could be something simple that is triggering the seizures.

    You could try this web site that has bags of info. My mother has received lots of support from these people.

    Information on epilepsy from the National Society for Epilepsy: causes of seizures, treatment and lifestyle issues.

    Hope all goes well
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  16. #16
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    no recent vaccinations either.

    i've got a flight back tomorrow, but i had to downgrade to an economy seat (hope i can still use the lounges)

    appointment with the speacilist on wednesday.

    cheers all.

  17. #17
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    Good luck to you and your little un.

  18. #18
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    KW, Have you got any news yet or is it still too early on, what people have you been to see with him and most important how is the wee fella holding up??

  19. #19
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    yeah hi mate, the young man seems to be doing fine now, nothing more, i have the appointment with the specialist this afternoon.

  20. #20
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    About all you can do is put it all in the hands of the specialists.
    Ask all the hard questions (write out a list of them so you don't forget any - and make him/her answer them), and if you aren't happy with the outcome, get a 2nd opnion.


    Good luck to you all.

  21. #21
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    Has he bumped his head at all? My mate took a knock on his head and had fits for a while afterwards.

    Cleared up though.

  22. #22
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    the doc reckons its benign focal epilepsy, which is a childhood form that they grow out of by 10 years old or so and not really a big deal,

    it can be manged with drugs if need be or left alone.

    bit scary but a bit of a relief now also.

    cheers all.

  23. #23
    The cold, wet one
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    You must be really relieved, KW. I'm pleased it's better news than you feared. Give him a big hug from us.

  24. #24
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    ^^
    very glad to hear that too willy.

  25. #25
    watterinja
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    Glad things are looking up, KW. Will pray for your son.

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