Hello.

A few weeks ago my 9yo daughter was winning running and swimming races. Then she had problems with her eyes and was eventually diagnosed with occular myasthenia. Within a week she complained of generalised symptoms and has definitely got the generalised disease.

She has now significant vision issues and although she can move okay at times, experiences strong fatigue at others.

My heart is broken completely. She is on 30mg mestinon six times a day and while i think it helps it doesn't do enough for her to function properly. School starts in a week or two and there is no way she can function at school in this state as she can't even read a book or whiteboard yet. I cant bear to think of her not going to school. We have only had one consultation since diagnosis due to the holiday period.

The reason for my post is that I'm looking for some positive stories at any cost. I understand she won't be the athlete she was but I'm hoping against hope she can get her vision and at least be a relatively normal kid at school.

She is so much braver than me but we have not told her there is no cure.

I know it's not good to live in denial but I'd give my right and left arm to be offered some hope by people who have been through this awful disease.

Yours.
Joel.

So sorry to hear!

Some tips on the vision--does she wear glasses? (If not, consider getting a cheap pair of plain glass (no prescription) ones.) I have had terrible troubles with double vision, and constantly changing and irregular causes, which seemed to be constantly defeating my ophthalmologist's efforts to control. So, we finally came up with just some simple tricks.

One way to stop double vision caused by the eye muscles not coordinating the eyes, is to cover one eye. But an eye patch looks terrible, and can be very uncomfortable. Especially for a kid.

This is why you need glasses. Cover one lens with scotch tape, the opaque (whitish) kind, not the shiny clear. This blocks the vision in one eye, without blacking it out completely. The cloudy effect of the tape fuzzes out the vision enough that only one eye will take the job of seeing, yet she will still have peripheral vision around the lens (helps with not bumping in to people and things around you), and light coming in (versus the black of an eye patch).

For me, one whole lens fuzzed still played games with my head, as it was my dominant eye that was wandering the most and needed fuzzing out. So, we cut it back to only taping one half of the lens, from just about the center line to the outside of the glasses. This way, when the eye is seeing straight, I have both eyes working, but if it wanders outward, it goes into the fuzzy part and stops contributing to what I see, so there's no double vision.

If her eyes wander inward instead of outward, try taping the inner part of the lens.

As my eyes change the severity and amount of wander, at times I've been able to reduce it to just a strip of tape about 1/3 of the lens, again just past the center mark so I get straight vision, and at other times the entire outer half needs covering.

It's a cheap easy trick, if she doesn't wear glasses go get a cheap pair from the dollar store, even cheap sunglasses and take the lenses out, then just wrap one side in scotch tape, just to test if it works for her.

Also, instead of just an optometrist, she should be seeing a good pediatric ophthalmologist with experience in eye muscle disorders, if she isn't already. A pediatric ophthalmologist is better as a growing child has other considerations for them to watch as well.

Also, contact your school immediately and insist they start working on an assistance plan to keep her in school. Her teachers and the nurse need to be aware of the problem, so that they don't think she's just goofing off or being uncooperative when she has fatigue, they need to know that she NEEDS to lay down and rest. The nurse will need to give her her medication, you do know that a child CANNOT hold or take their own medicine at school.

An aide will probably be necessary to help with the schoolwork, if the school had a blind child there, what would they do to help that child? She can learn to be more of a listening learner, instead of a visual learner. An aide or tutor can do her reading for her until this is brought under control. She can do her assignments verbally, and have someone else write them down for her. There are ways to make it work, and your school is obligated to provide them for her.

I would think it most important to get her back into school, with her friends, even if she can't do much of the work yet until you sort the vision aspects. She can listen in class. If the teacher has given them a worksheet, and the class is working silently, then the teacher is free to come assist her and do it verbally.

Also, I find that in order to read, I cover one eye (take off the glasses, as I am also nearsighted, hold the paper close, and put a hand over one eye) and move the paper to wherever is most comfortable to make it easier to see.
Take a plain piece of paper and put it over whatever it is she is reading, so that it is a guide just below the line she is reading, blocking out the lines below. This makes it easier to stay on the line you are reading, as that is the only one you see. (She might need a paper or card with a slit that shows ONLY the line she's on, instead of blocking just the stuff below) A different color paper may work better, instead of glaring white, try a beige or soft blue or whatever color paper for this.

Holding the paper or book to the side a bit, instead of center, may help. Down in her lap instead of straight ahead or on the desk. Help her to find her "happy spot" for seeing. The place where her eyes naturally relax to when trying to read, usually down is easier than up, but she will have her own best place. And she may have to get used to just doing a little, taking a break, do a little more, take a break....

Whatever little tricks you can find to help her work through this, try them, use them, adapt them. Hopefully something I've offered will help her a bit while you and her doctors figure out how to get things under better control.

Thanks so much for your advice. One question though. Is there a danger in putting too much reliance on one eye? If she was to do this could it impact the ' taped ' eye, or put too much strain on the eye thats working (not taped)? Should we be getting two pairs of glasses covering different eyes and getting her to alternate? Her right eye seems to be more affected.

Those would be questions for your eye doctor, but I don't think so. I've had one eye half-taped for several years now. People also end up keeping one eye taped or patched for a while. Just monitor it, and if it is bothering her, then stop or take breaks. Don't know if switching eyes would work, or if it would confuse her brain as it had to keep switching eye dominance. She's young (I'm not) so she may be able to tolerate more than an adult, or she may not. So, just see how it goes and what works to help her.

I'm so sorry to hear about your daughter's difficulties and her MG diagnosis. She might try taking a nap mid-day. This can help recover some muscle strength, including with the eye muscles. Another thing to try might be using ice packs on her eyes. The effect will be of limited duration, but they can help, too, particularly with ptosis (drooping eyelids). I've used the ice packs on my eyes sometimes in desperation. While the effect is temporary, it seems like it helps my eyelids stay up better for a little while, and I think that my eyes work better in general for maybe 20 minutes or more. Part of that might also be because I have closed my eyes while using the icepacks, which is also helpful, because it gives all of those muscles a chance to rest.

Sending lots of good wishes to you and your daughter - hang in there!

Take care,
ErinBear