Need some help

My 17 yo daughter has Reflex Sumpathetic Dystrophy. She went to children's Hospital of Philadelphia 2 years ago and became functional. The RSD has been under control. Well until 8 weeks ago when she got kicked in the trachea at dance. Then things spiraled out of control slowly. The RSD pain came back and then slowly she started having involuntary movements started in one leg. She was walking and functioning the best she could. Pain was out of control too. Then moved to both legs then to arms. She had clonus too. She was also diagnosed with POTS. Now the neurologist gave her a diagnosis of FND. She isn't making this up. She really doesn't have control of her reflexes. She is not depressed. Even though she can no longer go to school. Her senior year. She wanted to e a Dane major at college. But now can not even walk to the bathroom herself and needs a walker. Can you please help.

5 Replies

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  • FND is a horrible condition all I can Say is Get as much Nero Pysio as you can and try and make walk as much as she can bear.

  • Yes I agree the more pysio the better I found swimming easier when I can't walk much as it relaxes the muscles and you can move more freely in the water see it you can get her so hydro and keep getting her to walk don't let her lay there for hours I have found if I don't more with in an hour its harder for me and it also brings on my lock-in symptoms were I can only blink my eyes I can't even talk and that is horrible to not be able to talk or move so yes move as much as possible

  • First, FND is not the same thing as Malingering (when you make something up for some sort of gain). Second, FND is detectable on functional MRI's - it will show unusual patterns of activity in the brain. So even though the problem might be "in her head" it is a very real problem. And best of all, teens have great success in overcoming this! Unfortunately because it is so little understood, you will need to become her advocate while she makes the transition into adulthood and becomes her own advocate.

    Like the others have said, get her muscles moving, even if she cannot do it on her own right now. And here is something weird you might consider… When I first started having symptoms (Dystonia is my primary symptom) I could not walk forward, but I could walk backward andI could grapevine. If she has a sense of humor and is willing have her try some different movements. But if she is really stressed and worried, let it go for now, she needs successes more than anything right now, not more pressure and frustration.

    Humor is KEY!!! Watch sloth videos or something silly. Break the cycle of frustration. The harder a person with FND tries to force her body out of this, the more difficult it can become. Get her into a bathtub (I know, not easy). Or get her a massage. Anything to facilitate relaxing will shift her brain activity into a more relaxed state.

    Keep reading and learning. It's not a simple journey, but it is something she can recover from.

    This is a very real problem, and like all brain injuries, it will take time to learn to work with it and to heal. Small successes will become big changes in time!

  • I am so very sorry to hear about your daughter. I know you must be beside yourself. And of course she is not making this up. Dr.s just do not know what this is, so therefore, it can;t be a medical condition, but a manifestation of the mind. I believe it is an undiagnosed movement disorder. That is what I have been labled with. I respond to sinemet so they say I have dopa-responsive dystonia. Also possible fnd symptoms. I Have seen so many psychiatrists in the beginning, praying it was my mind, so it could be fixed. But each psychiatrist would send me back to the neuro. I lost all confidence in the medical community. But then I found a wonderful Dr. who knew it was neurologic and started trying things. First Tegretol, and anti-seizure drug that worked great. But over years they added the sinemet. Am now pretty stable. Gait is off, can;t walk good. Have terrible vomitting and stomach pain from the dystonia. But compared to when I am really sick, it is wonderful. Keep searching for that good Dr. who listens. Don;t stop. You are her best advocate. My husband and children kept searching, even when I was too tired. We all need someone to fight for us, when we are to ill to fight for ourselves. I lived 2 years in a chair, not even being able to get to the bathroom by myself at times. There is hope. I am living proof. I will be praying. God Bless, Cathy

  • I would suggest referring to 2 websites and joining a Facebook group that deals specifically with FND. neurosymptoms.org was set up by a Consultant in Edinburgh, Scotland who specializes in FND and is used extensively in both the UK and around the World now as a reference. FNDHope.org has been written by FND sufferers for FND sufferers and their carers. you can join the Fb group by clicking on the "Join Facebook" button on the website homepage. The support of over 1400 other sufferers worldwide is amazing!

    Good luck and hope things get better soon with all the support and knowledge available here.

    Best wishes, Duncan.

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