Update on daughter

[Shebjo]

Just wanted to update you all: I am the mother of twin girls age 12- one was diagnosed with MS last year - she started Avonex in nov 2013 and took that until Aug 2014. She was handling Avonex okay - no major side effects but her neurologist just switched her to copaxone 40 mg. She was developing antibodies with the Avonex so dr wanted to try her on copaxone. She has been on it for 2 Weeks and seems to be handling it okay - she hates that stinging feel and the bump/lump she sometimes gets.
We are here in NYC and her neurologist referred her to Stony Brook Hospital's Pediatric MS Center - for a study on kids with MS. She had her 1st appointment this past Thursday. That went well.
School started almost 3 weeks ago and she is in 7th grade. So far so good. She(and her sister) are continuing to do well academically - and dome teachers have already commented on how academically strong she is .... but I still have to remind them that she has MS and although she has no visible issues ... She has MS lurking in the background.

[Cat Mom]

Thank you for the update, how heartbreaking it must be. A quick tip for that after-Copaxone bump is to push down on it with her finger for approx 30 seconds, then ice, then Benadryl cream. I've been taking Copaxone for over 7 years and despite not having a lot of fat, I have zero permanent lumps from injecting... thanks to this tip, which I originally read about here.

I hope things continue to go well for both of you!
Jen

[Jules A]

School started almost 3 weeks ago and she is in 7th grade. So far so good. She(and her sister) are continuing to do well academically - and dome teachers have already commented on how academically strong she is .... but I still have to remind them that she has MS and although she has no visible issues ... She has MS lurking in the background.

Thanks for the update, I'm so glad she is doing well. I'm curious why her teachers need to be reminded that "she has MS is lurking in the background".

I hope she doesn't become defined as the girl with MS, especially if her symptoms don't require disclosure to everyone she encounters.

For me its bad enough to have this miserable diagnosis I definitely don't want the whole world to know I have it for as long as I can avoid disclosure anyway.

[Temagami]

Iīm fairly open about disclosing. I donīt understand why MS seems to be at the stage that cancer was in the 1950s. Hey, folks will now openly say, "I have breast cancer." The B word and the C word in one sentence. Itīs hard to imagine the world getting educated about MS unless more people who have it are willing to share - if only to educate. My dream includes everyone getting their vitamin D levels checked and then doing something about it.

[Shebjo]

I find I have to remind the teachers because mostly my daughter's symtoms are not that visible (to most people) and I need them to understand she may be achy at times from the injections and tired and may need to use the bathroom more frequently and elevator.

For example - although She does have an elevator pass ... A teacher at beginning of school year had the kids walk up 4 flights of stairs. My daughter walked up the 4 flights ....but before that wasn't feeling well - felt a little dizzy and so shouldn't have walked up stairs. I had to talk to principal and teacher to remind them.

I have told the principal and teachers at school of her MS diagnosis because I feel it's important for them to know ... Not that she should be treated special but that they are aware that there will be times she needs certain things. I also think it's important for them to see that although MS is a chronic condition - kids with MS can do well academically and just need extra help sometimes

Albeit - if my daughter was an adult and in the workforce I may be advising her not to disclose the MS.

** 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. **