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Anyone with experiences of Pre-teens having MS

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    Anyone with experiences of Pre-teens having MS

    Hi. A couple of days ago - I introduced myself and my situation on the Introduction Forum and now would like to ask a question here.

    First just a quick recap of my situation: I am the mother of 11 year old twin girls and one daughter - was recently diagnosed with having CIS and being at high risk for getting MS and she just started Avonex 2 weeks ago.

    Anyone on here with young kids (under 13) who have been diagnosed with CIS. If so, can you share your child's experiences with MS? What has been good, bad, etc. I know there is a forum for teens but don't see anything specifically for preteens.

    More info on my daughter: Back in April 2013 - daughter had double vision. She was hospitalized for a week. 1st Brain MRI showed 1 lesion on cerebellum and we were initially told it was a brain tumor. But turned out that it wasn't.

    The next 2- 3 MRIs (in May- Aug 2013) showed no additional lesions and that the one lesion had gotten smaller and also spinal tap showed no problems. And her double vision practically disappeared. Then this past Nov, another MRI showed a 2nd lesion in another area - so doctor says has CIS at high risk for MS. Honestly - she is doing very well academically and well physically and other than headaches no major problems using the Avonex ... Thus far this MS diagnosis was a surprise and is kind of overwhelming.

    She has a great pediatric neurologist who specializes in MS in children (we are in NYC). And Per neurologist request, daughter is having neuropsychological testing - this testing is expensive but doctor wants to test her cognitive levels to 1) have a baseline to compare subsequent changes to and 2) to see if she needs any specific academic services esp while in school. What makes it difficult is there is not a whole lot of info on MS and pre-teens so any experiences anyone has would be appreciated.

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    I am really sorry about your daughter, and proud that you as a mom are reaching out for her. You might want to try to post this on the teen board. It can be found under the "I can relate" portion of the boards. There are teens on there that were diagnosed earlier than 13, but cannot join until 13. On the young adults board, it is the same thing, some were diagnosed as young kids.

    Please continue to reach out. At least we can support you for specific symptomatology. I think that the neuropsychology exam is a good idea. Not only can they get a baseline, but they can give you tips on what to do if they find problems.

    Take care and we are here for you.
    Moderation Team
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)


      Breaks my heart to read this. I went ahead and read your other thread as well. Something a parent does not want to go through.

      There is an online Pediatric MS Support Group for parents at MSConnection. Google it. It is relatively new and only has 40 members, but I think you might find some support there.
      "Yep, I have MS, and it does have Me!"
      "My MS is a Journey for One."
      Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri


        I'd never heard of this before. I am so sorry about your daughter. Good luck, and may early treatment help in the short and long term.


          Thanks all for your words of advise or just for responding. And I have joined these different support groups.