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32 year old son really struggling...

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gillybean62
gillybean62

hiya my son has been diagnosed with epilepsy since he was 13 years old and hes always had seizures pretty bad and never had them controled even though hes been on the medication, he has fits 2-3 times a week or more sometimes. the last 6 years he has really gone down hill he cant leave his flat alone , he sleeps all day , loss of memory and gets very confused has no emotion... and he is takin medication for depression but he keeps getting worse, i have 2 jobs full time i try my hardest to be there for him but im also under my dr because i find it hard to cope with his condition , the drs dont seem to help much and keep passing the buck ... im very worried about him i love him and really need some advise... is he enitiled to help with care? x

0 likes, 12 replies

12 Replies

  • DawnDedee
    DawnDedee gillybean62

    Posted

    Hi Gillybean,

    My heart goes out to you and your son. My granddaughter, who I raise, is 14 now and has epilepsy also from the time she was an infant.

    Can you search for a better Neurologist? Has your son tried other medications? Has he had the test where they attach many leads to the head and spend 24 hours in a controlled room with a video camera recording every physical movement and brain activity?

    Sometimes I cry for my granddaughter because she has to suffer so with her brain differences and how it is and will affect her entire life. I wish I could take this away from her.

    She takes Lamictal and Gabapentin. The first video test showed that her brain never stops seizing, but three years later I asked to repeat the test to see if the medication really helps, and it does control the seizures 100 %. However, she fights against taking her pills and that hurts her.

    She too has short term memory problems and is overall different from others who do not have brain differences. I believe she will have difficulty working, driving, living on her own, etc. I applied for disability for her when she was younger but was turned down. Occupational therapy helps her and physical therapy too.

    Sincerely,

    Dawn, USA

    • gillybean62
      gillybean62 DawnDedee

      Posted

      hi dawndedee,                                                                                            thank you for replying to me,my son has been on different medication all his life but nothing controls his fits.he also takes medicatioin for depression,he get so confused sometimes,hes had different tests done including the leads stuck on his head,one consultant said he may have fits all his life.i wish i could help him more  i do his shopping and pay his bills as he will not leave his flat there seems to be no help out there.                                                                                                                                                                    Sincerely,                                                                                                                                                                                                               gillybean, england

       

    • DawnDedee
      DawnDedee gillybean62

      Posted

      Have you researched brain surgery? There is a special procedure that can be performed just for extreme cases.

      Gillybean, can you go outside your area to search for help? Is there a teaching hospital/university you could go to? My personal experience with teaching hospitals has been superior compared to individual doctors.

      Dawn

    • gillybean62
      gillybean62 DawnDedee

      Posted

      Thank you Dawn,we have an appointment at the hospital soon and i will mention the brain surgery to the doctor.
  • Winnie143
    Winnie143 gillybean62

    Posted

    Hi Gilly/Dawn,

    I had epilesy at puberty, still get the odd ones and they scare me to death.

    I feel my arm jerking and I go to bed and lay in recovery position waiting !!

    Sometimes it wears itself off or I have one.  I am now in my 60's I was hoping

    they would go but the poos are still here.  I get them when under pressure so try and see a neurologist.   I am on the old tablets but they work for me but we aren't all the same.   I have not had one for 4 years not even the shakes. I am on phenobarbitone but they do not suit all now Hospital has decided to put me on keppra also !! zzzz sleep non stop.   Good luck with your Son and g/d Dawn xx

    Cutting down the keppra as I have slept twice  today but will they listen..No!!

    Good luck to you All

    xx xx

     

  • Tazchurch
    Tazchurch gillybean62

    Posted

    Ring the Epilepsy Action helpline, they are knowledgeble and helpful. have a website too.

    The number is 0808 800 5050 and is freephone

    • Tazchurch
      Tazchurch

      Posted

      Can usually give an idea which benefits may be able to apply for as well, ask them about care too, also his local council and his GP.

      Has he a care alarm? On pressing it you go through to a switchboard which has emergency contact numbers and knowledgable staff. I know from personal experience it can make you feel less alone and afraid.

      Get a care package put together for him. Usually done through social services often with a GP refferal. They then help with equiptment, assign a care worker to co-ordinate things, help with forms, benefits, etc. Agodsend and one which will help lift the pressure from you, I have one and my sister says it is the first time in a long time she can relax. PM me if I can help further with this in any way or for information.

      Quick thought does he live on his own and get council tax rebate and/or help with rent if he pays it?

  • vicki17933
    vicki17933 gillybean62

    Posted

    I'm pretty sure he is.. Also try some music romantic kind or even classical .. Music helps the brain relax and settle down.. I have had epilepsy since I was 3.. I noticed music always helped me relax..

    Go to the social service office and get some info about his benefits.. I'm pretty sure he's elgible for HELP..

    You on the other also needs to be relaxed.. Get a ipod and relax with your favorite singer that tells it like it is.. Singing along with that singer will help you exhale your feelings of agitated and stress..

    I hope that helps you a little smile

    • DawnDedee
      DawnDedee Tazchurch

      Posted

      I was told by the Early Intervention Services I enlisted help from for my granddaughter when she was very young, that classical music played while sleeping can repair brain damages. So I did that for a long time and now that I am reminded of it again, I will do it again. Perhaps it is for the youngest brains, I do not know, but it is safe enough to try.
  • steve1951
    steve1951 gillybean62

    Posted

     gillybean

    Sorry your son is going through this difficult state. You mention he takes an anti-depressant and sleeps all day. I take the anti-depressent mirtazapine about before going to bed as it makes a person sleepy. Some anti-depressants may lower the threshold of having a seizure. Did notice an increase in seizures after he started taking the anti-depressant? I would google the meds and read the possible side effects. You may want to also google the possible interactions between the seizure meds. with the anti-depressant. Dr.’s aren’t always aware of these things. I had knee surgery last year and the surgeon gave me Tramadol for pain. After taking it for a couple days I started having problems. When I looked it up, one of the possible risks was to lower the seizure threshold. I stopped taking it.

     

    I live in the U.S. and have changed, as DawnDedee has suggested, Neurologist when I wasn’t happy with the treatment of one.

    Take Care, steve

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