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 ...so 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. **
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 ...so 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. **
Comment