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Thread: New Member- Looking for Help with TM

  1. #1

    New Member- Looking for Help with TM

    Hi All- I'm posting for my 11 y/o nephew, diagnosed 2 days ago as likely TM- testing is on-going. While visiting me in CA the symptoms developed and several hours later we were in the E.R. getting CatScan, MRI, LP, Etc. He isn't able to move his legs or hips but does have sensation in his feet which may have improved slightly over the last day.

    At some point in the short-term his father will take him home, transferring to a local hospital for treatment, etc. The reason for my post is I am searching for any opinions / recomendations on hopsitals or Doctors in the St. Louis, MO area that someone on the forum has experience with.

    The family has no illusions about this situation, but remain resolved to do all that we can do to get this little boy the best treatment possible and hopefully back pitching little league baseball again.

    Any recomendations are welcome- and I thank you in advance.

    t

  2. #2

    Transverse Myelitis Association

    Twosnap -

    The www.myelitis.org site is a the resource site for TM.

    Sandy Siegel, is the President of the organization, and I'm sure would be happy to help you. Sandy's email is ssiegel@myelitis.org

    They have a symposium coming up in Dallas on Friday, September 24-Sunday, September 26.

    I'm sorry your family is going through this and hope your nephew will be OK.
    "Our lives begin to end the day
    we become silent about things that matter."
    - Martin Luther King Jr

  3. #3
    Senior Member
    Join Date
    Sep 2007
    Location
    Fithian, IL
    Posts
    1,967
    My husband was at Barnes Jewish Hospital for MS, they were wonderful.

  4. #4
    thank you for the responses and well wishes- I've contacted Sandy and will hopefully speak with him today.

    I have also heard good things about Barnes- thank you for the recomendation.

  5. #5
    Be sure he is going to a pediatric SCI rehabilitation program, ideally one that is CARF accredited for medical pediatric rehab AND spinal cord injury care. While being close to home is important, it is just as important to be working with the right experts. Many general rehab programs don't do enough SCI to know what they are doing, and adult SCI rehab centers often have no peds programs or are not allowed to admit pediatric patients.

    Johns Hopkins is the leading research center on TM, and Kennedy Kreiger has a pediatric program.

    I can also recommend any of the Shriners' Hospital SCI Centers: Sacramento, Philadelphia, and Chicago.
    http://www.shrinershq.org/Hospitals/...alsBySpecialty

    Did he get IVIG??

    (KLD)

  6. #6
    Thank you SCI Nurse for your reply. Speaking with his Neuro today, I asked about both Plasma Exchange and IVIG- both are planned with the PE for after the steriod treatment is completed shortly. Given the duration of the PE treatment, it seems that it may be better served after he returns home.

    Point absolutely taken regarding taking him to the right place, compared to just taking him home. It seems that the St. Louis Children's Hospital (SLCH) works with both Barnes Jewish and Washington University in this area and has a strong program. SLHC has a neurorehab program that focuses on SCI and is also CARF accredited.

    He has made some improvement day by day, having regained the ability to urinate independently and also forward and backward movement of his toes on one foot.

    Great recomendations- thanks for taking the time to reply.

    Trevor.

  7. #7
    Quote Originally Posted by TwoSnap View Post
    Hi All- I'm posting for my 11 y/o nephew, diagnosed 2 days ago as likely TM- testing is on-going. While visiting me in CA the symptoms developed and several hours later we were in the E.R. getting CatScan, MRI, LP, Etc. He isn't able to move his legs or hips but does have sensation in his feet which may have improved slightly over the last day.

    At some point in the short-term his father will take him home, transferring to a local hospital for treatment, etc. The reason for my post is I am searching for any opinions / recomendations on hopsitals or Doctors in the St. Louis, MO area that someone on the forum has experience with.

    The family has no illusions about this situation, but remain resolved to do all that we can do to get this little boy the best treatment possible and hopefully back pitching little league baseball again.

    Any recomendations are welcome- and I thank you in advance.

    t
    TwoSnap; Terribly sorry to hear about the TM, I'm not going to be able to provide info about medical treatment in your area, but I can give you a bit of info pertaining to what I've experienced with TM. I'm nearing my 2 year anniversary when my experience with TM became a reality, I can tell you that youth is on your side; whereas I was 51 when I got nailed. I see a professor at Albany Med College who is also a physiatrist at Albany Med Center in Albany NY. He is a member of an orthopedic group and diagnoses the difficult cases for about 20 doctors, including mine. I started feeling poorly about this time 2 years ago after we sustained a minor flood in our home from the septic system, it took about another month or so before things really changed physically; and being a T-10 para already it didn't allow any true symptoms to be viewed until Thanksgiving. Somehow I managed to get through to just before Xmas when 3 of my fingers on each hand curled flat to my palms and stayed that way overnight. My personal care physician had no clue, and neither did the first physiatrist that I saw, they kept looking at my c-spine for the answer. I was in therapy with a purported "great" hand therapist who basically did nothing for a month, and then was able to see my current doc. Time is of the essence with TM, and according to my doc there is no cure, only experimental proceedures. I was diagnosed about 3 weeks after a fellow teacher of my wifes came down with "flu like" symptoms and then TM; she is still paralyzed from the neck down. One question that I posed to my doctor after seeing him" is this our generations version of polio?" He thought for but a brief moment and replied;" no its worse." I did my research, and the similarities are striking, I had the fever, a blood clot which he said was was from immobility and my second in the same leg, (but I haven't walked in 28 years) along with my first UTI in 25, difficulty breathing, etc. I'm left with limited use of both hands and arms, because the TM decided to land in my cervical region, and the best thing; the TM triggered Rheumatoid Arthritis which is also an auto-immune problem. Your nephew will survive and move on if it comes from within himself, just make sure you and the family are there to keep him going to get him through it all.

  8. #8
    Fescueblue, thanks so much for taking the time to respond and for sharing your story. I didn't see that you had responded, I'm so sorry for the delayed response. I had checked back on this post to make an update when I saw your post.

    It sounds like you've been down a rough road. This syndrome is scary and confusing and you're right, it doesn't have a lot of answers. I think in my nephew's case, youth is on his side both physically and mentally.

    In our case, our local hospital treated him with steriods within 12 hours of the onset of symptoms. His parents and his doctors hesitated to go the IVIG route based on his age, and continued with steriods and PT. We consulted every day with Sandy from the TM association- (he's an angel.)As indicated in my post above, this treatment did have an impact as he was slowly able to begin moving his toes and regaining feeling as well. After about 1 week, he was air-lifted back to St. Louis to Childern's Hospital to continue his treatment close to home.

    He was at Children's for about another 3 weeks under this treatment and progressing very well daily, when one day, I'm happy to report, he was able to stand on his own and walk across the room to his mother when she arrived for a visit. They discharged him that day to return home and continue PT 3 to 4 times per week. Last week he was cleared by his doctors to participate in team sports, and will re-join his little league baseball team.

    I'll say that the care we received was exceptional in every way both here in Tarzana and in Children's in STL. For his part, "J" was dedicated and resolved to get better every day. I don't think we'll ever truly understand what made him get better, but I'll credit him and his Doctors and be happy with that. The family is still in touch with Sandy from the TM Association, to leverage whatever learning can be had from this experience.

    As a "NICU Father" myself, I wanted to close out this post with an update so that any parent that stumbled on it in a terrified late-night web-search could see a case with a happy ending- they don't seem to get posted as much as they should. If any parent reading this is such as person, I'm happy to speak with and can be reached at: twosnap@yahoo.com

    Thanks again to this forum and its members

    t

  9. #9
    Senior Member
    Join Date
    Sep 2007
    Location
    Fithian, IL
    Posts
    1,967
    Such wonderful news, so glad things turned out so well. Any chance that you happened to have Dr. Naismith? He was my husbands Nuero there and I just loved him, he was wonderful.

  10. #10
    Great news! I'm glad to hear that your nephew is making a fine recovery, with excellent rehab help. Blessings to you and your family.

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