pediatric ms

Understanding Pediatric Multiple Sclerosis

Mandy Crest Health Guide January 08, 2009
  • Pediatric multiple sclerosis. Now there's a phrase you don't hear every day. But, sadly, it does exist.MS, for all its variations and symptoms that come and go, is an extremely difficult disease to confirm in any case. Because MS is most often diagnosed in people over the age of 30, pediatricians gen...

4 Comments
  • Lisa Emrich
    Health Guide
    Jan. 08, 2009

    Mandy,

     

    I'm so glad that you discussed this.  I know that this very question has come up on site a few times.

     

    I have been in touch with a 16 year old girl living in a country which doesn't typically see MS at all.  In fact, even her doctors do not know what exactly to do with/for her. 

     

    She described to me how she feels like...

    RHMLucky777

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    Mandy,

     

    I'm so glad that you discussed this.  I know that this very question has come up on site a few times.

     

    I have been in touch with a 16 year old girl living in a country which doesn't typically see MS at all.  In fact, even her doctors do not know what exactly to do with/for her. 

     

    She described to me how she feels like a "freak" and a "weakling", not able to even run with the other girls because she'd just fall down.  She even wondered if she should drop out of school because of her difficulties.

     

    Imagine not understanding your disease and being deemed a one-of-a-kind because literally there are no others like you within the borders of your country.  That's a hard thought.

     

    I turned her on to some folks online with whom I thought she could talk about things.  I hope that she is doing well.

     

    Thanks for bringing up the topic.  This had been bouncing around in my head too.

    • Mandy Crest
      Health Guide
      Jan. 08, 2009

      That's a heartbreaking story. I'm sure that the information you provided to her was of some comfort. That's what I love about this site -- we reach out to help, just as others have done for us.

       

      Children with MS is kind of a new topic in the world -- hopefully, as research continues, these children will find the help they need.

       

       

    • Lisa Emrich
      Health Guide
      Jan. 08, 2009

      I wish that I could say she came through here, but she is unrelated to the couple of folks asking about MS in children/teens.  Actually, I accidentally found her in one of my periodic internet searches for additional bloggers talking about MS. 

       

      She was completely unaware that there were so very many of us in the world, or that people were talking...

      RHMLucky777

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      I wish that I could say she came through here, but she is unrelated to the couple of folks asking about MS in children/teens.  Actually, I accidentally found her in one of my periodic internet searches for additional bloggers talking about MS. 

       

      She was completely unaware that there were so very many of us in the world, or that people were talking about living with MS online.  I hooked her up with some folks closer to her own age and who (I knew through their writings) would appreciate her concerns.

       

      That's the type of stuff online which brings me the greatest personal pleasure.  It is that reaching out to help which makes all of this online activity meaningful.

       

  • PeninaD
    Dec. 13, 2013

    From the age of 15, our daughter began to be plagued with rectal pain/IBS, fatigue and depression. Each was treated separately, and the fact that IBS and depression ran strongly in my family made it all too understandable. But at late 17, she suddenly became so much worse, exhasted, staggering, falling, clumsy, unable to follow through with thoughts. It took...

    RHMLucky777

    Read More

    From the age of 15, our daughter began to be plagued with rectal pain/IBS, fatigue and depression. Each was treated separately, and the fact that IBS and depression ran strongly in my family made it all too understandable. But at late 17, she suddenly became so much worse, exhasted, staggering, falling, clumsy, unable to follow through with thoughts. It took a couple of months till a doctor recognized this was seriously out of the norm, and got her on the path to a diagnosis.  Even then, the neurologist initially diagnosed it as A.D.E.M.  When she relapsed quickly after high dose steroids, and a second MRI showed new lesions shortly after her 18th birthday...
    She has spent only 2 weeks in school this senior year. No educator in her school district or the surrounding districs has heard of pediatric MS. They could be so much more helpful, but seem dumbfounded.  After many weeks of hospitalization, and Rituximab infusions, she will stabilize enough to get back to at least half days in school, and with luck, graduate this year with her twin sister.