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Discussion in 'Personal' started by fattybumbum, Jan 14, 2010.

  1. My gorgeous clever eccentric 4 year old son has just been diagnosed with epilepsy. He had a seizure in the middle of the road on Christmas Eve. I am distraught (privately, not in front of him). Please tell me some positive stories about people with epilepsy. I need them. If you go on the forums/net all you read is doom and gloom. I guess the people with epilepsy who are getting on with their lives don't bother posting on forums for epilepsy. So, all positive stories appreciated. Cheers!
  2. ((((Fattybumbum)))) The only positive story I can offer is that a close friend suffers but has never let it bring her down and tries to live a life unfettered by the doom and gloom you mention. I do hope that you receive the support and guidance that you will all need at this time.
  3. Cannot really help, but I would have thought that early diagnosis would be a positive
  4. I worked with someone who normally went years between fits, only illness or a change in medication might trigger them. She had 5 children, a job, a happy marriage and a grandchild. I knew another workmate who had far more frequent fits but also had a happy marriage and children which was the most important thing to her. Her friends and workmates were all used to helping her when needed and there was surprisingly little fuss when she went through a bad patch at work. Many people who find the right medication manage the situation on a long term basis. 70-80% of people go into remission with their fits. It's early days, you'll get a lot more information and hopefully opportunities to meet others. I wish you all the best for the future.
  5. Doglover

    Doglover Occasional commenter

    It seems they have acted very quickly in diagnosing your child, and that is good.
    Have they told you what type of epilepsy it is? Has he had more than this one seizure? Is he on medication?
    Epilepsy is a very manageable condition. There should be no reason to expect anything other than a positive outcome.
  6. inq


    Was at uni with lad with epilepsy - never a problem at all.
    Got a friend, aged 25, who has/ had severe epilepsy - once they found the right drugs she hasn't had a fit in years whereas she used to be hospitilised almost fortnightly. She was born with brain damage but now the epilepsy is under control she is one of the happiest individuals you could ever wish to meet.
    I taught a lad with epilepsy when he was in Reception, it was never a problem and he's now a bright and cheerful 12 year old.
  7. Thanks people. I needed stories like these. He is on epilim going up to 12.5mls a day. His seizures are mainly at night but the one he had on Xmas Eve confirmed it was epilepsy - before that the consultants were not sure and all his tests were clear. He has had it since he was a baby but it took 3 consultants before anyone would listen to us and he said it was probably nothing. Two months later we were back in his office (after the day time seizure) with the diagnosis of epilepsy. So it has actually taken nearly 4 years to get him diagnosed. [​IMG]
    He is a great kid though and not troubled by it.
    I am scared about the side effects of the meds too.
  8. oldsomeman

    oldsomeman Star commenter

    you shouldnt be to scared of the medication.........it really does work
    I have friend who found out about his epilepsy when he fell of a ladder up a chimmney...he was a steeple jack.he now is on medication, but suprisingly he gets few fits......if he is with me i ll recognise the symptoms.One side effect for him is cant drive and work with machines......but as your so is young then no doubt they wil sort him out.
  9. Doglover

    Doglover Occasional commenter

    Unfortunately your experience of how long it can take the condition to be diagnosed is not unusual, because it can be so many other things apart from epilepsy.
    Hopefully though, now he is on the medication, things will start to settle.
    My daughter's friend was diagnosed around age 5. Once on medication, she was very stable quite quickly. The only problem arose about 2 years ago, when they decided to reduce and withdraw the medication. She had a few seizures, which settled when they reintroduced the medication.
    She is a bright, funny little girl, who is able to do exactly the same things as her peers. The condition hasn't held her back in any way, and her mum is very matter of fact about the whole thing.
    Similarly to you, it took a while to have it diagnosed, but once it was, they were happier as they knew what they were dealing with, and able to manage things.
  10. My MiL was diagnosed with epilepsy as a child. She 'grew out' of it and didn't have any fits thoughout adulthood until she was 37, when she had her final period. That was the extent of her menopause - her periods just stopped. After that her fits started again for a short while, but stopped again.
    When I met my MiL she was 47 and as she hadn't had any fits for several years, she had a valid driving licence. After the death of her dad, combined with the onset of other health problems unconnected to her epilepsy, she had another fit and had to hand her licence in to the DVLA. Since then, she has had occasional fits, maybe one every two or three years. When she does fit, though, it tends to be quite severe and she is in bed for up to three days afterwards. She is now 71 and hasn't had a fit for about two years. She has held down jobs, broought up two children, and regularly looks after her grandchildren with my FiL. She takes Epillum and as far as I am aware, she has had no side effects.

    With regard to medication and side effects, I have a child with complex needs (not epilepsy). He takes eight different medications a day, more when he is unwell. Some of his conditions are rare and there are no medications for children, so he has smaller doses (based on his weight and height) of adult medications. Yes, there may be side effects int he future, but that is a chance I have to take. At least this way, he has a future. Without the medications, he would be in pain and it is likely that he would have needed further surgery to save his life. The surgery, though, could kill him. As it is, even with medication, he has an increased risk of oesophageal cancer when he is in his forties (about 10% chance of getting it, as a non-smoker. If he decides to smoke when he is older, he may not live to his forties)
    I know it is a different situation, but given the choice of a good quality of life now against possible side effects in the future, I have chosen the quality of life. Medication is just part of his daily living. So far, there have been no adverse side effects and he has a good life despite his many and varied problems.

    You may find that your son is eligible to receivve Disability Living Allowance, which is available for those people who have a condition that affects their life. The local Carer's Centre or Welfare Rights Officer can help you to fill in the forms (it's not that I don't think you are capable, it's just that there are about forty pages and many people find it helpful to have a WRO fill it in for them).
    You can get support from your Carer's Centre, www.cafamily.org.uk and www.cerebra.org.uk - cerebra have a good section on their website about the DLA form, should you deccide to apply.
    Please don't let epilepsy put you off from allowing your son to participate in any social activities such as sports clubs or Scouting. My son is now 11 and was a Beaver and then a Cub. Because of his learning difficulty, he will move up to Scouts later than usual, but this was agreed between myself and the scout leaders. He has a great time at Cubs and the leaders are trained in first aid. I have spent some time with them so that they know precisely what to do if he chokes (one of his problems), needs changing (he's doubly incontinent), cannot breathe properly (which they have dealt with several times), vomits (another regular occurance), or needs medication, etc. I was lucky and found a good Beaver and Cub unit straight away, but I know that it isn't always possible to find the right unit/sports club for your child if they have a particular need - but it is worth persevering.
    Epilepsy will just become a part of your son's life and your life. It will be 'normal' for you, even if it isn't for everybody else. Seek support if you need it - often it is the parent that finds it more difficult to accept than the child. Follow the advice given if there are any activities that your son should not participate in, but otherwise let him enjoy his childhood. Ignore prejudice. Join www.epilepsy.org.uk - you never know when you need advice or support, and specialist organisations are worth their weight in gold for information.
    Most of all, enjoy being a mum to your son.
    Take care,
    KFB x

  11. My son had focal siezures when he was 3. They occured in his left arm and, although the doctors did extensive tests they were never able to identify a cause. I am convinced, however, that they were brought on by some sort of stress. I was pregnant at the time and we explained to him that Gran and Grandad were coming to look after him while I went to the hospital to have the baby. Unfortunately, we neglected to tell him that I was coming home again and he thought I was leaving forever. The seizures started almost as soon as Gran and Grandad arrived.
    The good news is that he was put on medication (can't remember the name of it now) for about 18 months which successfully stopped the seizures. He was slowly weaned of the medication and has not had a seizure since. He's now 12 and happy and healthy - well, most of the time.
  12. Although I am not epileptic, I was put on epililm for a while (at the same dose required for epilepsy). The only side effect that I noticed was extreme tiredness at first, but it gradually went away.
    I teach a girl who has epilepsy - you would never know.
  13. Thank you all so so so much for your kindness in giving me these positive stories. I will save this thread so that I can read it over and over again when I feel anxious. Thank you you lovely people. You have made me cry (with happiness!)
    Fattybumbum xxxx
  14. Oh, and Kingfisherblue, I wish you and your son well. You sound like a great and very capable mother.
  15. My son was diagnosed with epilespy at 14 yrs old. He is now 22 and living a very normal life, although he does not drive at the moment. My advice would be to keep rattling doors and demanding answers if there is anything you are unsure or unhappy about, ask to see a neurologist or paed specialist. Also get someone to explain to you the side effects of the medication if i seems to be hindering his progress in school, my sone had lots of negative comments during KS4 which I was certain were medication related but which the staff themselves refused to accept until he transfered to a neurologist who described the exact same problems on first meeting from looking at his drugs!
    Remember epilespsy is a disability and make it work for you and him by claiming what you are entitled to to help.
    Good luck. Dont let this spoil your pleasure in your son, he is still that gorgeous little person.
  16. Know exactly what you are going through... my daughter was diagnosed aged 9 and it rocked our world. We have no idea where it came from or could understand why it started. She is well controlled on meds for now.
    She's now a teenager at Uni and the most positive, happy individual you could ever meet. She is a campaigner for sufferers and doesn't see herself with a problem- thank God! She has written articles for magazines and has appeared on TV - she may even be in a documentary soon. Her condition has NEVER stood in her way; in fact she would say that it's made her a stronger person. She is mainly concerned about people hiding their epilepsy through embarrassment and the stigma attached to the condition.
    You're right - a lot of the literature can be negative. Don't let it upset you. And it's probs true that those who are perfectly happy, have nothing to say.
    There should be something out there for us parents who have our own concerns, anxieties... and victories to share.

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