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has anyone had a child with alpers disease or syndrome?

My nieces 8 month old son was just diagnosed with this terrible disease. everything I have read says these kids dont live past the age of 10. Their quality of life is so racked with pain and seizures, How can I help my neice deal with this shes only 20 years old, and a thousand miles away from her family. Any advice out there?

 
DIANE463

Asked by DIANE463 at 2:39 PM on May. 4, 2009 in Kids' Health

Level 2 (10 Credits)
This question is closed.
Answers (4)
  • Diane,
    I so hope that you are able to get your niece and her little one to move home. She will need all the support you and her Mum can give. Alpers disease cannot be cured as you know and is very progressive. all that can be done is to treat symptoms to make more comfortable. They have found physical therapy to be helpful. I wish I could offer more help. I do suggest that you and the family read all the information you can find about Alpers. Medical Science changes every day and there might be new forms of treatment that can help. I am also glad you are aware of your nieces's young age. It is hard for any Mum no matter the age, but a young Mum has no experience to fall back on, I will keep you all in my thoughts. Our prayers are with your family. God Bless.
    decafsis

    Answer by decafsis at 10:04 PM on May. 7, 2009

  • i wish i had some advice. that is so sad and i cant imagine being in that situation. is she a cafemom member? there is a group that helps moms raising special needs kids. its a great group. maybe it will help to talk to someone who is going through a similar situation and they can maybe give her some advice. good luck and im so sorry she has to go through this.
    SThompson21

    Answer by SThompson21 at 2:47 PM on May. 4, 2009

  • there's a mom on here who posts about her little girl Harley who was just diagnosed with alper's syndrome. Sometimes she calls her Peanut. I cannot remember her screenname though. But she posts journals that are sometimes on the popular list.
    Pieta0227

    Answer by Pieta0227 at 11:29 PM on May. 4, 2009

  • thank you both so much for the advice. Im going to see if she is a member. We're trying to get her to move where her mom and I live, because everything I've read about what happens to these poor children with alpers is heartbreaking, and with no treatment or cure. Its going to be tough. Again, Thanks.
    DIANE463

    Answer by DIANE463 at 1:26 PM on May. 5, 2009