Need Pediatric MS Specialist

[LorenzoOilMom]

Ocrevus for 13 year old girl: My daughter, 13 just got out of the hospital on Wednesday. 5 days steroids. Her only sign of MS was blurry vision in left eye that started Feb 28th. Diagnosed Friday night with MS based on MRI: 16 lesions on brain, 3 were enhanced, 3 non-enhancing lesions on spine at C3, C5, C6. No issues other than eye (except maybe auditory processing). We will go anywhere in the US for a Pediatric MS Specialist. Does anyone have any personal recommendations? I hear Dallas UT-Southwestern, NYC-Langone & Rochester, MN are MS pediatric places. Also, we have already started Ocrevus approval process with insurance. Any advice on meds? We are frustrated with getting little to no information from a MS Neurologist that we saw this week here in Charlotte, NC. I'm terrified of another attack before she is on Ocrevus (assuming she is approved & gets on it.)

[Iona60]

As a mom, my heart is aching for you. The positive is that your daughter has received a quick diagnosis and a plan of treatment. I was diagnosed at the Mayo clinic in Jacksonville, but I don't know about their experience with pediatric MS.

[Iona60]

I just sent you a private message with a resource.

[Peruzzot]

My heart breaks for you. I don't know any pediatric MS specialist but if you go on the National MS Society's or MSAA's websites they might have links for what you are looking for. I've also seen programs specifically for kids on the CanDo MS website that you might want to look into as well.

[Lilith08]

Welcome to this forum. While I haven’t seen much/any talk of pediatric MS here, I hope you’ll find, as I have, that there is a wealth of support as well as a willingness to share and expand our collective knowledge. (Another forum I’ve visited is nothing near as helpful.)

CanDo MS offers this list of resources that might be a starting point for you. cando-ms.org/online-resourc...

I don’t know which centers specialize in pediatrics but a couple MS centers that I’ve heard good things about are the Shepherd Center in Atlanta and Rocky Mountain MS Center in Colorado.

Please keep in touch. We could all benefit from knowing more about the youngest members of our community. ❤️

[LorenzoOilMom in reply to Lilith08]

I've been to the CanDoMS site,, thanks!

[goatgal]

LorenzoOilMom Every mother's heart goes with you in your search for help. You might want to start with both MSAA and NMSS (the two large reputable US non profits for MS). Have you done an internet search to see where authors of medical journal articles about pediatric MS are practicing? That might give you some clues as to location. May you and your daughter find answers to your questions and help for her.

[LorenzoOilMom in reply to goatgal]

I will look those up. Thanks!

[IFwczs]

So sorry to hear about your daughter, but lucky she got diagnosed so fast. Call or email the National MS Society - they have contact information for all kinds of MS specialists by zip code. Here is their link: nationalmssociety.org/

[LorenzoOilMom in reply to IFwczs]

Thank you, I've been to that site. Great resources there.

[IFwczs in reply to LorenzoOilMom]

In order to get names, you need to call there. They have a database by location/area code and are always happy to help. Just so you know, I have somewhere read that children oftentimes outgrow MS. I think mine started when I was 6 and didn't come back for 20-30 years.

[Lilith08 in reply to IFwczs]

Is “outgrow” the right word here? I believe I may have had something neurological at about the age of 6, too, and I know others can look back at odd symptoms that now seem part of the puzzle—but I’m not sure I’d describe it as having outgrown MS. I see it as possibly a CIS (clinically isolated syndrome). I wouldn’t have ever received a diagnosis because even after a pronounced relapse/CIS in my late 40s, I had a single lesion and, therefore, no diagnosis. (Just trying not to muddy the waters here.)

[IFwczs in reply to Lilith08]

Knowing what it was might have helped me make the right nutrition and environmental choices. It means MS was dormant and might have stayed dormant if I had made the right choices. But I saw what happened to me at 6 as an isolated incident. It wasn't.

[Lilith08 in reply to IFwczs]

OK, I think I understand your point. I agree that it’s possible for the disease process to go dormant/inactive (the very meaning of remission). I wouldn’t say “outgrow,” though.

Thanks for the feedback.

[IFwczs in reply to Lilith08]

"Outgrow" was the wrong term. English is a foreign language to me, so I can use it as an excuse. What happened to you at 6?

[Lilith08 in reply to IFwczs]

😊

Two things, though I don’t know which came first. I once had a virus and my pediatrician was concerned that I couldn’t raise my leg (while laying on my back) as high or as straight as he thought normal and suspected meningitis. I had a lumbar puncture and was in the hospital a couple nights.

Within roughly the same year, one morning when I tried to get out of bed I couldn’t straighten one leg. I remember missing school that day and going to the doctor but nothing more. My MS nurse thinks that one may have been related to MS. Seems to me like incidents could be related to spasticity.

[IFwczs in reply to Lilith08]

Interesting. I was shocked to find out how many different symptoms MS may have watching (I know, it sounds funny) the TV show about Dr. House. MS is their first diagnosis for everything. What DMT are you on? I am on Ocrevus and have progressive MS.

[LorenzoOilMom in reply to IFwczs]

Thanks, I've been to that site! Yes, lots of info.

[amc8184]

I'm glad you reached out, LorenzoOilMom , I'm so sorry to hear about your daughter's diagnosis and the symptom issues she's experienced. I'm glad the family was able to receive answers for what was causing her symptoms and that a potential treatment plan is being put into place. MSAA's Client Services Team will be reaching out to you directly with some additional information and resources, as there are several pediatric MS centers located across different parts of the country. In the interim you can try to see another MS specialist in your area to see if they can offer additional guidance and information for her case if this can help. I hope she's able to receive the care and follow up needed and please continue to reach out for information and support. Take care, Angel, MSAA Client Services Specialist

[LorenzoOilMom in reply to amc8184]

Thank you!

[Lilith08]

Just found this: pediatricms.org Pediatric MS Alliance

Fingers crossed!

[LorenzoOilMom in reply to Lilith08]

Great resource! Hadn't found that one yet!

[kdali]

Indianapolis treats kids with MS, but none of the neurologists are triple specialists like that, that I know of. I hope you find what you’re looking for fast! I’m so very sorry that you and your child are going through this.