Hi. Just wanted to introduce myself - I am the mother of twin girls age 11. One was recently diagnosed with CIS at high risk of MS (see my post in the Tell Me About a Yourself forum) so her neurologist who specialize in MS says they treat 'at high risk' the same as having MS. A couple of days ago, she just completed her 1st month of Avonex. So far she is not experiencing any major issues and no major side effects and I hope it stays this way. It's just hard ... Having an 11 year old that might have MS. So concerned about her future. They're is not a lot if specific info on pre- teens with MS ...even this forum is for 13 years old and above .
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I realize no one has replied to your post and I wanted you to know that I have empathy for your family and your daughter. I was 33 when diagnosed, but doctor said I could have had MS for 10-15 years and not known it. The very best advice I can give you is to make sure she continuously exercises and keeps her muscles real strong. Once MS affects your mobility, it becomes very hard to move around, even walk, so it's so important she stays active. Accept the bad days (you will have those) and cherish the good ones. Hopefully, the Avonex will keep the MS at bay and will prevent it from progressing.
My situation didn't turn out so well, and I have the hardest time using the right side of my body. I am extremely weak and can no longer write, lift my arm, barely type, and walking is a struggle every day. I am only 34 and feel like I am 90.
But, I have a great support system of family, friends, and doctors. My mother is still my strongest supporter. She is there for me through the worst of moments and the best. 11 year old is such a young age. Keep encouraging her, as she does her weekly injections, MRIs, and doctor's appointments. I get scared at 34 to do these things, so she is such a strong little girl already to endure it. God bless and keep strong.
** 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 so sorry your daughter is going through this. There are many more DMDs on the market AND in the pipeline. I hope the Avonex works well for her and flairs are under control.Originally posted by Shebjo View Post
There have been posters who had their first flair at a young age (albeit not 11) but who did well for many years before obvious progression. With the technology and expertise of good doctors now, your daughter has the advantage of starting a DMD earlier.
She and your family will be in my prayers.
BreeComment
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Thanks Bree and Dreams for your words. So far my daughter is doing well. Actually she has had no major side effects on the Avonex - they have been manageable. And she is not having any issues at school. Although she is at high risk for getting MS, Hopefully she doesn't get it or if she does, maybe because of technology and medical advancements - she won't suffer like so many since she is only 11. She is not having any issues at school and is one of the top students academically (Proud momma) and she places the violin too. Thanks and I will post updates on her from time to time. And know that Everyone's comments via these posts are beneficial to me.Comment
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Your daughter sounds like she has a really good dr. I certainly wish mine would have started me on treatment when I was diagnosed as CIS. 11 is such a young age to have to deal with all this though. I really hope she doesn't move on to full blown MS. My dr told me if you don't progress within 2 years, you most likely never will.
I totally agree on keeping active. A year ago I had a flare that left me barely able to walk. As my walking slightly improved, I started going to the gym. I don't know if it's a coincidence or if what I've been doing makes such a huge difference, but my walking greatly improved after starting regular workouts. Some days it is tough, but it's much better to push through it than to take a chance on deteriorating.
Having a good support system always makes a difference too. It's great that you're doing what you can to help your daughter out. I don't know what I would do if I didn't have my mom to lean on, and I'm 28.Diagnosed 1/4/13
Avonex 1/25/13-11/14, Gilenya 1/22/15Comment
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Thanks Istrl ... I pray my daughter stays well ( and I pray there is a cure one day for everyone). She does have a great doc and that is so reassuring yo us. So far - daughter seems to be doing fine on the avonex ... I hope but is helping.Comment
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Please be sure to get her vitamin D levels tested (spring is the time for diagnosis because it's the lowest Vitamin D time). Mine was abysmally low. Low vitamin D has been implicated as a possible factor in MS and seems to explain why people in higher latitudes tend to get it more frequently.
Here is a page from the National Institutes of Health on the subject stating that those who start out with higher levels of Vitamin D have better outcomes. The studies are done with Interferon, so you can take Vitamin D with Avonex.
http://www.nih.gov/researchmatters/f...02032014ms.htm
Your GP can help you with thisComment
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Thanks. The neurologist has tested her vitamin D level and it is low so she is taking vitamin D3. In fact -both girls vitamin D levels are low.Originally posted by BigA View PostComment
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Hi .Just wanted you all to know that I posted an update (on getting to know you) forum about my daughter .Comment
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