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My daughter has dysautonomia and Postural orthostatic tachycardia syndrome

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  • My daughter has dysautonomia and Postural orthostatic tachycardia syndrome

    My daughter has a rare disease called dysautonomia. It seems that as much as 40% of kids with Dysautonomia have scoliosis. Has anyone else heard of this illness. Braces are too painful for her to wear because of the constant nausea and pain she is in. Her curve is extreme and getting worse. I'm looking for ideas.

  • #2
    Hi Mary Jane,

    Welcome to the board.

    Does your daughter see a pediatric orthopedist? I would hope she is seeing a ped. ortho. who has experience in treating children with similar types of medical backgrounds. I'm sure someone could help with a recommendation for a ped. ortho. if you let us know where you live. If you'd like to email me privately, I'd be happy to let you know who other parents have seen and had good experiences with in your area. My email is boulderfam@hotmail.com

    How old is your daughter? I read just a little about dysautonomia. I'd love to hear how it affects her. I know with kids who have multiple issues, its not easy finding the right specialists who have the experience you need. Good luck and keep us posted.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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    • #3
      Hi Mary Jane

      I'm responding under your original thread since this is a specific situation.

      What does your Doctor say? Do you have a Scoliosis trained Orthopedic surgeon recommending surgery? Is this Dr aware of the dysautonomia? Does the Dr that dxd the dysautonomia, know about your daughters scoliosis? What does he say? Do you have more than one Dr recommending surgery?

      What does your daughter say about having the surgery?

      Has the decision been made to have surgery? Have you committed to a date?

      Sorry about all the questions. It would help if we knew a little more.

      Regards
      Ed
      49 yr old male, now 63, the new 64...
      Pre surgery curves T70,L70
      ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
      Dr Brett Menmuir St Marys Hospital Reno,Nevada

      Bending and twisting pics after full fusion
      http://www.scoliosis.org/forum/showt...on.&highlight=

      My x-rays
      http://www.scoliosis.org/forum/attac...2&d=1228779214

      http://www.scoliosis.org/forum/attac...3&d=1228779258

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      • #4
        Hi Mary Jane,

        I'm interested to hear how your daughter gets on. What form does her Dysautonomia take?

        I was diagnosed with Postural Orthostatic Tachycardia Syndrome, a form of Dysautonomia, last week. I had been noticing that I had tachycardia for the past four years at least, but my pulse was always OK when I went into hospital for backpain treatment because I was lying down, so no-one realised that there was anything wrong

        I had infantile idiopathic scoliosis and have been in and out of hospital all of my life, with bodycasts from the age of 6 months, Milwaukee braces, and surgery at 10, 18 and 25. I'm 33 now and tachycardia was never mentioned as a problem so I believe that this is something that I developed in recent years.

        I was due to have further surgery to extend my existing spinal fusion, but the surgery was cancelled because my pulse was so fast at the pre-op test appointment at the beginning of the month. I thus got referred to a cardiologist who diagnosed me with POTS.

        I've felt increashing exhausted and fuzzy-headed over the past few years but I put that down to the effects of all the painkillers I've been taking, and the fact that I rarely get any sleep because of pain. Now I'm beginning to realise that this is probably down to the POTS.

        The good news for me is that the cardiologist has cleared me to have my spinal surgery, as he says it's safe for me to do so. If I manage to get the surgery done before your daughter has hers, I'll be able to report back and let you know how my recovery goes.

        Best wishes and good luck to your daughter, I hope things work out OK for her.

        Toni xx
        Last edited by tonibunny; 01-28-2009, 08:35 AM.

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        • #5
          Pots dysautonomia and scoliosis

          Hello, thank you for responding,
          My daughter is 17, she is seeing a peds ortho and this is the 3rd one over the years. none of them are interested in learning about her dysautonomia. We are to have a cardiac dr on standby for her surgery in June.

          We have yet to meet anyone with dysautonomia who has had surgery.
          She is so afraid of ending up in the wheel chair again and being homebound.

          Does anyone know about this illness. WE are in the midwest.

          Mary

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