This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello, I am new to the forum and new to MS, in that our 16 year old has just been diagnosed after 2 bouts of optic neuritis 2 months apart. She has a dozen or so brain lesions and, after two MRI's, it is obvious that there has been new activity between the scan dates. We are up to our eyeballs trying to stay on top of CCSVI and all that is happening there, but also have to help her with the decision which drug to start on. I have a fairly goo understanding of what drugs are available, but we really need to hear from others in the same situation regarding side effects, realities of dealing with this for a teen, etc.
Our daughter also has mild OCD, (which in some studies has also been linked to iron build up in the brain by the way) and so we have additional concerns regarding depression, and the like. All input welcome...and thanks!

Hi AMC, I can't speak for treatment of children but am more than happy to share the path my wife took when she was first diagnosed (age of 30). Keep in mind that everyone with MS is different and not everything works the same for everyone (a very frustrating part of dealing with this MS monster).

When Courtney was diagnosed we basically had 4 options in terms of disease modifying drugs, the well known CRAB drugs. The have relatively similar efficacy rates so we chose based on known side effects and settled on copaxone since it was supposed to have fewer of the flu like symptoms. Copaxone came with its own challenges though as my wife is relatively thin the skin reactions she had make it look like she had tumors under her skin for sometimes days, and she had 2 bad post injection reactions (one where she thought she was having a heart attack and another that put her stomach muscles into such a spasm she couldn't move and I had to carry her to lay down....it subsided about 15 minutes later). After the second reaction Tysabri had just been re-approved and with practically double the efficacy rates of patients without relapses. Shes been on Tysabri for nearly 2 years and although her MRIs show no new or active lesions she has still had some downward progression and has gone from no-cane to cane to now a walker most of the time.

At first we immediately went on the MS Diet (swank), which if funny because its basically a cardiovascular patient diet and with the new CCSVI findings it makes sense to eat a diet and take supplements for vascular health. We've strayed from that diet over the last year and a half and are getting back on it now.

Another thing you can try that wont cost much would be Inclined Bed Therapy (there are posts on here discussing).

In regards to what drugs can your child take, a lot will depend on diagnosis of RR, SP, PP which can be very difficult at the initial diagnosis. Hope others can provide more insight for you.

Best Wishes,
John

Thank you for sharing your experiences. I wish the best to you both.

Please look at LDN "drug" - It really helped me a lot with no side effects.

Best of luck

Algis

I would really suggest that you look into the Swank Diet. It is an overall very healthy diet that is easy to follow if you can get the entire family on board. I have been following it very strictly for about 7 months and have seen great improvements.

I also take Rebif, and in regards to the flu-like symptoms, they are very manageable. A few Advil, and I feel normal. I have been on Rebif for a year now, and don't notice anything different on the days that I take it.

Always remember that she can switch drugs if she starts one and has a bad reaction to it.

I wish her the best!

-Jennifer

Yes, I can't but agree. I was 17 when my first symptoms appeared and I wish I hadn't listened to the "formal", "scientific" advice.

The only things I have found helpful, so far, are diet, exercise, supplements and LDN. Everything else was crap. I am speaking just for myself.

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."