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Daughter diagnosed NEADS

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charlotte81152
charlotte81152

Our 13year daughter has been diagnosed with NEADS. This is having a huge impact on all our lives. She has up to 100 seizures a day. She also has absenses which can last over an hour. She is seeing a pyschairatrist who has said that there is very little help available. I am desperate to know how I can support my daughter. Does any one have any advice?

1 like, 18 replies

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  • sophie40201
    sophie40201 charlotte81152

    Posted

    Hi carlotte81152, i'm 14 and i have been dignosed with neads. This is also having an big impact on my family too. Sadly i undertsand there is no medication to take to make this better but you must stay strong and support your daughter through her bad times hopefull this make the attacks less and help your daughter and your family. Good luck. 

     

    • charlotte81152
      charlotte81152 sophie40201

      Posted

      Hi. It is a horrible condition. We have found avcupunture has really helped with our daughter. She is also having CBT sessions. Hopefully you've been able to get some cbt in place too. Charlotte
  • debst82
    debst82 charlotte81152

    Posted

    Hi Charlotte

    I am now 34 and have been suffering with NEAD since I was 21.

    Over the years NEAD have become a lot more known but there is still not much help or support about.

    I have any where from 0-20 seizures a day and its been 4 years since I last went a month with out a seizure at all.

    I have had CBT, full psychological help and have no problems dealing with past events that have occurred in my life but this has made no difference to my life.

    When I had my 1st seizure I had fallen down a set of stairs but have been told there is no damage.

    In the last few years I have developed ptosis in my right hand side and have joint hypermobilty syndrome which makes the seizures very hard to live with.

    I would love to hear from people my age as I have not met anyone yet who has had this condition for over 10years and am interested to see if there NEAD has got worse with age as well.

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