Remeber Undiagnosed 12 year old?

    • Anonymous
      June 16, 2009 at 11:02 pm

      Hello Everyone, I began writing on this forum on early December of last year after my 12 year old son became progressively paralyzed over a 24 hour period. He was hospitalized for a week and then followed closely for months with multiple tests and still no diagnosis. All MRI, CT, CSF and blood work was normal. His reflexes were intially normal but then changed after about a month and were brisk.

      With the help and guidance from many on this board we continued to pursue the possibilities and after much research we scheduled an appointment with Dr. Douglass Kerr at Johns Hopkins who is the Director of the Transverse Myelitis Center there.

      We just returned on Saturday with great news. Dr. Kerr is a wonderful and caring person and has the clinical experience to look at these unusual situations and know what is going on! He put my son at ease right away which is a very difficult task since this all occured.

      His doctors were all leaning towards a spinal cord injury without radiographic findings but Dr. Kerr feels that he has “Probable” Transverse Myelitis. It cannot be difinitive since he had no findings of inflammation but his clinical pattern, his recovery and his reflexes all lead him to TM.

      What was the most important and most wonderful thing was that he said this will be a one time event and that he will recover fully although it will take a while longer…he felt he would be at 100% next Spring.

      It was such a relief to hear, especially from someone as knowledgable as he is. He looked at my son and said that he has seen a ton of cases just like his. We never thought we would hear that from anyone.

      This was the first forum I went to in my quest for knowledge and the most supportive even after we concluded that GBS was not longer in the differential diagnosis.

      Thanks to all of you. I felt that I needed to come back and let you know the final outcome and the wonderful news. I hope that you are all doing well and making progress.

      My son is actually playing sports right now even though he is not as strong as he once was. He is hanging in there and we will continue with the rehab until he his spinal cord is fully recovered.

      You are all in our thoughts and prayers and again, thanks for your help and caring.

    • Anonymous
      June 17, 2009 at 7:38 pm

      Thanks very much for sharing the good news. It is great that your son is doing so much better and, my understanding is, virtually back to normal now if I remember the last posts okay–playing ball and active and not afraid. It is an inspiration to hear a positive story about a kid with success over this such a scarey illness. Tell him his cyber family is proud of him!
      WithHope for a cure of these diseases

    • Anonymous
      June 17, 2009 at 7:42 pm

      Nancy, you and your Sweet son are still Very Welcomed here:) Thanks for sharing the Good news about his dx with us. I’ve been wondering about him, I’m soo glad he has a dx. Nice to hear he is playing sports again. You Brightened my day.:)

    • Anonymous
      June 20, 2009 at 1:06 am

      Thanks everyone, he is playing sports again even though he is not as strong as he was before. He has really taken it all in stride and is excited to know that he will be his old self again in about 6 more months. Again, thanks to you all and know that you are all in our thoughts and prayers as well.

    • Dawn Kevies mom
      June 20, 2009 at 11:48 pm

      Great news about your son!! Thanks for the kind words you posted on my thread. I am so glad you were able to get the right dx! Best wishes on your son’s continued recovery. Keep us posted occassionaly and enjoy the summer.

      Just a little something funny, Kevie has been feeling great lately, he just finished treatments yesterday and has been going non stop since yesterday. He and his friends have been making
      HUGE messes, bb’s everywhere, grass all over the house from going in and out of the pool, grass in the pool, wet towels everywhere, but you know what, I didn’t even care. I was just glad he was able to make the mess and play like he used too. I so understand your elation with your son’s good news! We are both so blessed!!!
      Dawn Kevies mom