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Thread: Urgent:14 year-old girl diagnosed with Transverse Myelitis over the weekend. Need advice for family?

  1. #1

    Urgent:14 year-old girl diagnosed with Transverse Myelitis over the weekend. Need advice for family?

    My neighbors neice is 14 years old and was diagnosed with transverse myelitis over the last couple of days. She went to the hospital with back pain and paralysis on July the fourth. All I really know as of yet, is that she is still paralyzed and has no bladder function. They are moving her to TIRR from Texas Children's Hospital, but I am not sure when. They did say that she was now currently on steroids (not sure what kind or dosage). They could not tell me how long she had been on the steroids, only that she was misdiagnosed with a urinary tract infection and something else the first couple of days.

    I am trying to get more information to pass along to the family. The doctors have told them that they do not know what to expect, and that she may or may not regain any function.

    Can anyone help?

  2. #2

    transverse myelitis

    Carl R. - Transverse myelitis is a condition that does have an unpredictable outcome. It is of acute onset, often follows a viral infection, a communicable disease such as chicken pox, measles, etc. For a clear explanation go to the National Institutes of Health at: There is a Transverse Myelitis Center at Johns Hopkins University in Baltimore, MD.; this site has extensive information re: the condition and access to resources: CRF

  3. #3
    Join Date
    Apr 2002

    14 yr old tm

    Carl R There is also an organization, Hope it helps.

  4. #4
    I guess what I'm looking for is more about what alternatives or trials are available. I have searched this site and there are some good descriptions of the injury, but haven't found anything concerning therapies.

    For example, would she be a candidate for the Proneuron activated macrophages trial? Or is there any use in giving her Sygen, etc.?

    What should the family know, that the doctors and/or hospital might not tell them?

  5. #5

    transverse myelitis

    Carl R - As far as I am aware, there is not any recommended treatment. For possible research recommendations, I would again recommend the TM Center at Johns Hopkins, and to get Dr. Young's response and/or advice. I will ask him to offer some thoughts. CRF

  6. #6
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Wisconsin USA
    Your friends need to speak with an expert in TM. It is treated differently than acute SCI is. Another source for help and information is Cody Unser's Foundation:

    But first have your friends contact Johns Hopkins.

  7. #7
    Carl R, because TM is a relatively rare condition and few or no clinical trials have been carried out to assess therapies, there are little or no data to guide clinical treatments of the condition. So, most people treat it like an acute attack of MS. They generally give methylprednisolone at a somewhat lower dose than for SCI and for a longer period (1-2 weeks). They may give intravenous immunoglobulins (IVIG) which have been reported to be helpful, but only if the IVIG is available because everybody has been using it. Finally, she needs MRI and careful evaluation to rule out other causes, such as an AVM or MS. I have very high opinions of two institutions when it comes to neuorological disorders in children. One is Johns Hopkins and the other is Shriner's Hospital in Philadelphia. TIRR is a good place but probably has limited experience with TM. Wise.

  8. #8
    Dr. Young, what is AVM?

    Thanks everyone for the help!

    They said she was doing well and stable and has a good attitude so far. There were going to transfer to TIRR on Thursday if everything goes according to schedule.

  9. #9
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Wisconsin USA

    For infants to young adults with TM

    "The Transverse Myelitis Association will be holding a Children's and Family Workshop in Columbus, Ohio from Thursday, July 18 - Sunday, July 21, 2002. The TMA Workshop will focus on children from infancy to their early twenties and will include their brothers and sisters and their parents. Most of the parents have never met another child or a parent of a child with TM. These parents and the families often feel isolated, frightened and alone. It is imperative that we offer them this opportunity to make connections with others who can offer them emotional support and encouragement."

    It is a WONDERFUL group of people who have banded together to advodate for care and cure of those with TM. The above kid's workshop is the first of its kind that I have heard of to include the entire family.

    For those who are in the process of or who have been diagnosed with TM the TMA is truly a blessing. TM effects so few people that many are not diagnosed correctly or are diagnosed too late for optimum treatment. The TMA raises money for research, for care and for outreach to members around the world. Many on this site recognize the name Jim Lublin from the Quad-list (see Links Forum). Jim is also the IT Officer for the TMA as well as owner of a vent users subscribtion list.

    For those with young children who are trying to teach community service too, please check out the above link and read about Reading For Rachel. It is a wonderful way to introduce them to service for others while reading for themselves. :-)

    Wise, you may want to add the Mayo Clinic to your list for TM. They are working with plasmapherisis (sp?) for those who do not respond to steroids in certain cases.

  10. #10
    Just an update. She was doing okay as of yesterday and had kept a good attitude so far. They were going to start the IVIG yesterday and postponed the transfer to TIRR for another week. They had to get IRB approval for the procedure for some reason, but it was available.

    Thanks everyone for the help.

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