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GREAT NEWS!!! (So excited I can't hold it in!)

Discussion in 'Parents Off Topic' started by katie.c, Jan 7, 2011.

  1. katie.c

    katie.c Approved members

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    I was going to just post tomorrow but... I can't stop myself. It's the best news we've had in a while. I've just been telling everyone I can but I thought you guys would probably understand my excitement. Think of it as similar to a pump start.

    Damian has epilepsy. He's tried every medication and so many combinations and he still has seizures at least every other day for the most part. Sometimes he can get through a week here and there without any but it's rare. He functions relatively well day to day but there's that period right after one that he's a wreck. The epilepsy and D just don't get along. Bad D day=more seizures. Seizures=wacky BG. Other than that it's just stressful for him and the rest of the family and it does make it hard for him to be the dad he wants to be sometimes and do everything he wants to do. He's stayed with us partly because of it but he moved out a few months ago and I worry more now than when he was here all the time.

    He looked into options besides medications and the vagus nerve stimulator stood out. To sum it up simply it's like a pacemaker but it affects the brain rather than the heart. He's been waiting to get it done and today he got the date set!! :D:D:D I only found out yesterday about the possibility of getting the green light today. (Nice thing to leave to the last minute to tell someone about huh? :rolleyes:) It was a huge surprise for me to hear and it's coming up a lot sooner than I imagined but I'm too happy for him to be nervous right now. The nerves will kick in because of the surgery aspect soon enough but right now I'm thrilled. Sorry if you all think I'm nuts now getting this excited.:eek:

    WOOHOO!!!
     
  2. sooz

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    Awsome news! I can only imagine what it will mean to you and your son! Congratulations!
     
  3. Heather(CA)

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    I am so happy that your happy! That's great! :D Keep us posted:D
     
  4. lisab

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    Congrats!!! Great News!! Seizures are certainly no fun to live with.....nor the after affects which hang about long afterwards. I wish your son all the best....I have only heard great outcomes and better quality of life afterwards.

    I have epilepsy.....fairly well controlled with medication.....I have had periods where it hasn't been....if I ever got to this point where medication wasn't doing what it should, I would certainly go the same route as your son.

    All the best:)
     
  5. mandapanda1980

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    Worth getting excited ovet, this is great news!
     
  6. MySweethearts

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    That is awesome news! :D:D:D
     
  7. VinceysMom

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    Soooo excited for you all!!!! That is such wonderful news!!! Please keep us posted... will say lots of prayers!!! VERY cool!

    Kathy
     
  8. Lee

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    Oh, crossing my fingers that this is a successful treatment for your son!
     
  9. Jace's Mommy

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    That's awesome news ! You have every right to be super excited !
    Hey, at this point in life, I get pretty excited when all the socks match up in the laundry ! :D
     
  10. HanksMom

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    Awesome news! My older sister has severe epilepsy - seizure activity of some sort nearly every day, and over 150 grand mal seizures last year. She received one of the first nerve stimulators several years ago, and it has been a tremendous blessing to my family. Not only has it decreased the volume somewhat, but it has greatly decreased what used to be strings of really bad days.

    My prayers are with your family! Good luck!!!
     
  11. Brynn

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    That is amazing! I also have epilepsy and my doc talked about getting one for me, but we found a med that worked (knock on wood) I am soo happy for you guys! Congrats.
     
  12. Tuff

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    That is fantastic! I'm excited for both of you :D
     
  13. shekov

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    Excellent news! I am so excited for your family.
     
  14. Mom2rh

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    What a relief! Good news!
     
  15. katie.c

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    THANK YOU EVERYONE! :D
    The support and ecouragement means a great deal to me. I know it'll help me get through the times I'm worrying about the surgery and outcome. Right now I'm still just humming with excitement. I realized I totally forgot to tell you all when it is. :eek: It's only 3 weeks away! It's really coming faster than I ever expected. We're all keeping our fingers crossed that this is finally going to help him and it gives me that nice warm feeling knowing you are too. I'm trying to find a reasonable way to take a little time off work to be there but he has such great friends too and they've already offered to help out any way they can. I'll definitely keep you posted.
     
  16. deafmack

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    That is awesome.
     
  17. C6H12O6

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    Sorry to change the topic but can I ask how you are accessing Symlin in Canada ? I ask because it is something I am interested in if it is available.
     
  18. madde

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    Your excitement radiated through your post!:D I'm excited for you as well!

    Congratulations, this is great news for your family. Keep us posted!
     
  19. katie.c

    katie.c Approved members

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    It's not a problem at all. I put it there in case anyone was interested. I can't give you every little detail only because I haven't asked him myself (I will if you're still interested but he's just napping and I don't want to wake him ATM). I just know that while it's not for everyone, it's made a difference for him. It's still not available in Canada but Damian didn't have too much of a hard time getting it. He has to go into the US a few times a year and pay full price for it but to him it's very worth the trip and the extra pokes. There were some hoops to jump through in the beginning and a little snag here and there now but overall it doesn't cause him much of a problem. Now that he's gotten used to it you'd never be able to get him off it. He's already very very insulin sensitive and thin so the purpose for him isn't dealing with resistance and lowering boluses, or losing weight, but for post meal spikes and it works well.
     
  20. C6H12O6

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    Yeah, I would love to get some but unfortunately I have been told that it will likely never come to Canada due to lack of a market for it. The other comment was that it is something a lot of people try and ultimately give up on.

    I imagine it is very expensive paying the full price given how much meds cost in the US. I actually used to go to an endo who had the ability to write prescriptions that could be filled in the US, but I live far away from his office now.
     

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