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Daughter diagnosed NEADS

Posted , 6 users are following.

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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  • david87617
    david87617 charlotte81152

    Posted

    We are having the same problems with our 34 year old daughter. Hers started after banging the back of her head. The neurologist says its anxiety but she's not anxious. It's been going on 9 months now and it's not getting better. Her counsellor had not seen

    It before. The symptoms are similar to those caused by arythmia and she had been diagnosed with SVT but they won't look into this just say it's anxiety. I have not found any help from the professionals but Facebook has some helpful pages and the STARS website. Hope this helps. Good luck.

    • charlotte81152
      charlotte81152 david87617

      Posted

      Thank you. I will look at that website. I have found Lorna Myer's pages useful too. There seems to be a lot more support and recognition in America.
    • Shifty50
      Shifty50 charlotte81152

      Posted

      Hi charlotte

      Hope your well... not many people know about neads and the small percentage that do don't understand it unless of course your going through it... I was diagnosed last yr... coming up 2 2 yrs shortly... it's changed my life.... I was never happier..I was told that research is still be carried out as to what can caused them... the professionals don't even no... I still don't no y it's started and if it will stop... the only thing I can say is.. if you can find triggers that may cause your daughters seizures... what she does be doing... r if there's something goin on in her life...mayb she could write a diary... have you looked at nonepilepticattacks org it's a really good site... I would love to talk more...

    • charlotte81152
      charlotte81152 Shifty50

      Posted

      Thanks for your message. I have looked at the website. My daughter is keeping a diary but attacks appear completely random. She is having complete rest for a few days and this seems to be doing her good although I do worry about how she will cope with the reintroduction of school. I have found young epilepsy charity to be supportive and am desperately searching for new avenues to get my daughter CBT as this seems to be effective but not available to get.
    • david87617
      david87617 charlotte81152

      Posted

      Our dr. Yesterday agreed with us about my daughter not being anxious and spoke directl to the neurologist. He is now saying that because of her traumatic health issues over the last nine months the brain is shutting down when IT associates certain signs that the body is giving out. Today I have kept hey very busy with no television which appeared to be the trigger. It's been her first seizure free day for weeks. i read on here that a seizure is an interruption in the electrical impulses in the brain. That set me thinking, could it be things like electric pylons. Sub stations anything that interrupts the flow, even mobile phones. I must admit desperation is beginning to take hold of our thinking.
    • Shifty50
      Shifty50 charlotte81152

      Posted

      Hi charlotte just one day at a time. Is your daughter under a neurologist? R ask the gp to refer you. You need be careful thu who they refer you too.. because sometimes the cbt might be for other aspects rather than focusing on her attacks and the routes to why there happening. I started cbt 4 weeks ago...I waited 6 months to be referred because any cbt I looked up myself was for people with other situations they been thru. My neurologist referred me to a neuro psychologist who specialise in nead.
  • mary50992
    mary50992 charlotte81152

    Posted

    Dear Charlotte,

       Over two years ago I was having seisures 24/7. Some days over 100 per day. I would end up in hospital in the ER. I was give througth IV anti-seizure drugs to stop the seizures. They would stop them but a week later I would start having seizures once more none stop. I was give different drugs that would only stop the seizures for awhile. I was losing my quality of life. Finually I was sent to a seizure clinic. I was label NEAD, damaged goods. I never believed a  bite of it. NEAD is surpressed so called trama trying to resuface. A so called battle between the unconious mind and the conios mind, really? We remember tramanic memories in our lives.Bad memories. I still have seizures every so often. They are terriable but they do come to a end. I had my first seizures after I had a heart scan done right as soon as I got off the table. So began my road of coping. My doctor will deal with other physical parts of me but not my seizres. seizures are uncontroled movements. Hopefuly your daughters will lesser in time. I so feel for you. The body does heal it's self somr what. There are so many people suffering with these unexplain seizures in this world. I'm here to talk.

    • charlotte81152
      charlotte81152 mary50992

      Posted

      Hi. Thank you. Our daughter is having complete rest at the moment which seems to be the only thing we can do which helps slightly. With complete rest she is having fewer seizures a day but as soon as she increases her physical or mental activity it all starts up again. We are monitoring when they occur but there seems to be no pattern to it. We just don't know where to turn.
    • david87617
      david87617 charlotte81152

      Posted

      It's completely the opposite with my daughter. I have stopped her watching daytime tv and made her look after the house, kids and anything else to keep her busy. Has she seen a cardiologist? arythmia gives very very similar signs. My daughters heart is also faulty and for a long time we considered that. I don't mind if you want to carry on with the discussion

      We are still amazed there is no help available.

    • david87617
      david87617

      Posted

      Have you read about the ketogenic diet? It may or may not help but it makes for interesting reading on Wikipedia.
    • charlotte81152
      charlotte81152 david87617

      Posted

      We are going to see our daughter's go tonight to see if she can also make a referral to camhs. I will look up the diet you suggest. I spoke to another parent yesterday whose daughter's seizures have dramatically reduced since she had CBT. The problem seems to be how we can access these services.
    • david87617
      david87617 charlotte81152

      Posted

      We are paying for cbt £30 p/h. Rebecca is saying it helps her. She is going thru a bad time this week avr. 7 siezures a day. All triggered when she is relaxed. Her three children are used to it now. They all live with myself and my wife. Goodness knows how people cope on there own. How is your daughter doing?
    • charlotte81152
      charlotte81152 david87617

      Posted

      Sorry to hear your daughter isnt having a good week. We are still hoping we can access cbt through camhs. Our go has made a referral too. Have heard today of someone who is completely recovered which gives some hope. Hope the week improves.
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