Why is my daugher losing her vision

[HerMom523]

In a routine eye exam last May my 15 year old daughter was found to have binasal quadrantanopia. Since then it has continued to deteriorate. She currently has only about 40% of her visual field in tact. She has lost both of the upper quadrants in both eyes and it is moving into the lower quadrants.  her acuity is at 20/100 corrected. they have stated she has pale disks and some have seen atrophy of the nerve. Her MRI/MRA, CT angiogram have all been negative as well as her lumbar punctures and blood work. She has no lesions or bands but her neurologist feels she has clear markers of MS. We attempted Sumedrol IV for 5 days, with no improvements. Her neuro-opthamologists do not agree with the diagnosis, but are unable to identify a cause. At this rate she may not have vision left by Summer. She is now on copaxone in the hopes the her neuro is right. She does not have any other major symptoms. Has anyone ever heard of this happening before?

[twopack]

I'm echoing Shell's thoughts and wish I had more - anything really - to offer.  I'm not sure there's much available about pediatric MS.  It wasn't recognized as a possibility in kids until recent years.  I'm not sure it even presents the same in children and adults and near adults.

Have they done a 3T MRI specifically of the optic nerves to try to visualize lesions?  A visual evoked response?

What state are you in Mom?  The best article I've read (and understood) about MS related vision problems was written by some docs out of the University of Pennsylvania.... but its rather old (2007) and there's no telling if any of the three are still there now.  I know Philadelphia has some good eye places.  Are you close?

I'm posting a link to that article so you'll have the names and can also have a read if you wish - on the off-chance there's a tidbit that could prove useful.  Don't give up before getting through at least section 3.  That's where vision specifics begin.
http://www.medscape.com/viewarticle/556957

I'm glad your girl has been started on a disease modifier in case this is ON as a precursor to MS.  At the same time, I hope everyone keeps looking for alternate possibilities.  I know YOU will be doing everything that's MamaBear possible.  Will be thinking of you both.

[HerMom523]

Thank you Shell. We have been to the largest children's hospital and 2 of the largest research universities in the state and they are simply stumped. Some have started to present her case to panels in hopes of getting new ideas. So far the opinions have been conflicting. May have to go out of state soon. Thank you for your thoughts and well wishes.

[sllowe]

Hi there,

Sorry to be so brief, but I'm a Mom of 3 and I cannot imagine this. It's my advice to get a 2nd, and 3rd opinion if need be. Not saying your doctors are wrong, just know for certain it's just that important.

While the neuro-opthamologist disagree but have not found the cause, surely they can consult with some top neuro-opths on your behalf? If not, and you need to research your area, look into the top neuroscience institutes in your area, and look at those departments. Google names when you find them.

I truly wish you well with your quest to maintain your daughters vision. And, hope we can help.

-Shell