Ten yo with sight loss

[Murphysmum]

Hi, I’m writing on here out of desparation for a friend.

Her ten year old son had “an MS episode” last year which resulted in some vision loss in one eye.

Since then he’s been treated with several rounds of steroids but nothing has stopped the decline. He is now almost completely blind and definitely will be by the end of the year if they can’t do anything.

I know nothing about this. We’re in the UK and I just wanted to speak to some people maybe in a similar position. They say nothing can be done and they’ve never seen this happen in a kid of his age before.

I can’t stand by and watch, it’s so sad.

[jimeka]

I am so sorry to hear that. When it happens to an adult it is bad enough, but a child! Where in the U.K. are you? Have his parents had a second opinion? Great Ormond Street as a good reputation for ms. Blessings Jimeka 🤗

[Murphysmum in reply to jimeka]

We’re in Scotland.

They’ve been working with GOS I think but apparently it’s never been known for a kid with sight loss not to have healed itself.

It’s so sad, my heart breaks for them all

[jimeka in reply to Murphysmum]

Please keep us informed as to his progress, my prayers are with him. 🙏

[Kenu]

Mine started with complete loss of site overnight in my right eye 👁 That was the beginning of diagnosis. It came back completely after six months and starting a DMT. Hope is there, stay positive 👍🙏😉 Ken 🐾🐾

[Murphysmum in reply to Kenu]

Thanks, sorry what’s a DMT?

Complete novice here!

[Kenu in reply to Murphysmum]

Disease Modifying Therapy. Meaning one of the MS medication for slowing down the ms. Very crucial for newly diagnosed. The sooner you get started the better. Mind you I am not a doctor and this is my personal opinion. Get to a neurologist that specializes in MS is your best bet 👍🙏😉 Ken 🐾🐾

[DM0329]

So sorry to hear of his vision loss. Is it still just in one eye?

FWIW, I had a bout of optic neuritis about 8 years after I obtained a definite MS dx (at the age of 25) and after starting Avonex tx 5 years earlier. Thankfully, this has been my only real "deficit" thus far.

So, I've been living with a "95% vision loss" in my right eye (dominant hand right too) since my bout with ON in 2003. My vision never came back (nor can it be corrected with glasses, etc.). Yeah, it stinks.

But, you adapt. Not what you want to hear, but I hope his vision can be stabilized (in that it doesn't progress to the other eye) or that the flare can be mitigated in some way (less time; less severe, etc.).

Best Wishes!

[Murphysmum]

Hi, no it’s both eyes now, he’ll be totally blind in the next few months.

What’s avonex?

[bxrmom in reply to Murphysmum]

Avonex is an injectable dmt - avonex.com/

[ahrogers]

I know there is pediatric MS but do not know if treatment is different than for adults. Typically I see adults get a round of steroids when first diagnosed and then put on a Disease Modifying Therapy (DMT) of which there are many now such as Avenox. Not sure which ones are approved for pediatric use and that may be different in Scotland as well as what the GOS will cover. Here in the US each insurance company has different medications they will cover. We can also get financial assistance from drug companies to help cover the cost. For example, my insurance has a $5600 deductible per year I have to pay and then everything is covered after that. I get a DMT called Ocrevus which is an IV infusion every 6 months. The drug company paid all but $10 of my deductible.

You can search the MSAA site for resources on pediatric MS. Not sure if Scotland has a similar resource.

They may need to travel to get a second opinion from a pediatric MS specialist that can direct the local neurologist on the best course of treatment.

Praying for all 🙏🙏