Optical issues

My 6yr old son has NF1. Yesterday he had his annual eye care exam at the Opthamologist. The md discovered that his vision has for the second time had a slight decrease in visual acuity in one eye. When the md corrected the vision, my son's clarity was still the same/not improved. The md stated the reason could be lazy eye (amblyopia). Or, that the cause could potentially be a optic glioma and that a MRI may be necessary. The md discussed first treating the issue with glasses and/or patching, taking a non-invasive approach to see if that improves the vision. My question is, for those of you with children who have had optic gliomas, did your children have any visual symptoms such as lazy eye (amblyopia) or any other optical symptoms?

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Certainly children can have both, though without the MRI to see if there is an optic glioma which could also cause a discrepancy in vision, its virtually impossible to say which is going on. Sometimes with an optic glioma the doctor can also pick up other changes to the nerve with his visual exam (nerve may be pale, enlarged or somewhat twisted in appearance), sometimes they can't.

Amblyopia does occur more often in NF even without glioma. My daughter has been suspected of NF for a number of years and had to have patching for about a year and a half in total to correct hers. She started the patching at age 5 and now at age 13 only wears glasses/contact lenses for her astigmatism. Sometimes the improvement with patching can happen quite quickly (few weeks) but at the same time you may not want to put off the MRI?

I hope it turns out to just be a simple case of lazy eye.

Cindy

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I had a lazy eye as a child, that was a long time ago and they did not do eye patching back then. My eye is still condidered lazy, but I dont have any major issues with it.

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My eye was pale as a kid and one day it just stopped moving. I ended up losin sight altogether in that eye because of the optic glioma. I would suggest getting it checked sooner with an MRI.

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My six year old daughter has an optic glioma but her eyesight is fine; no sign of a lazy eye.

Your son’s ophthalmologist is not doing his job! Since optic gliomas are prevalent in people with NF1, any child with NF1 and a lazy eye should have an MRI to see if there is an optic glioma.

I agree with skb22, get an MRI as soon as possible. If your son has an optic glioma, it's best to be proactive and not wait until it’s too late.

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Thanks for the replies. Cindy, does your daughter have NF and did she have an MRI prior to patching/glasses?

We are going to have a follow-up with the Opthamologist next week. He did mention the possibility of requiring an MRI. I believe he ( as well as I) wanted to try a less invasive approach first. My son has his annual Neuro apt. in a few weeks so we can discuss the vision issues at that time and determine if an MRI is needed if the Opthamologist hasn't already requested we schedule one.

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My daughter has been suspected of segmental NF for a number of years (other variations of NF have also been suggested but segmental is the most common explanation). DD was 8 when NF came into the picture...she is now 13 . She has axillary freckling, a congenital heart problem sometimes associated with NF, dyslexia and very mild curvature of the spine...not yet technically scoliosis (touch wood). We were offered the genetic testing last year but we are waiting for now.

DD's vision issues were picked up at age 5 when she couldn't identify a single letter on the eye chart, and was falling a lot because she had lost depth perception. Dyslexia can also sometimes be linked to vision and looking back there were early whispers that I didn't pick up on until she began having a lot of injuries. Once diagnosed with the strabismus/amblyopia her vision was such (worse than 20/100) that we were told she would never drive a car, never be able to do certain jobs. We started a heavy patching regiment of 12 hours a day...minor improvement was noted within a month and then it just kept on continuing from there until it was near perfect (except for the astigmatism). She had one set back in grade 3 and they patched again for a few months. We go back again next month (we are seen every six months now that she wears contacts) but for the past 5 years her eye sight has been excellent (touch wood again). Since NF wasn't suspected when the vision problems started no one would have thought to do an MRI. Her vision corrected dramatically and quickly with the patching which would very strongly argue against a glioma. In our case, I see no point in doing an MRI now...like you, I believe they are to be used only when necessary and in our situation there is nothing to indicate that at this time.

I can't tell you what to do as there is always a risk in any decision we make for our children but you could always try a period of patching for a very limited time. During the patching they are going to super monitor for progress anyway (if they don't, insist they do) so assuming you have a decent doctor (and he sounds reasonably on the ball) then there is unlikely to be any drastic deterioration that goes undetected. Of course, that's a very personal decision.

Patching requires a great deal of commitment (in our case we were essentially blinding our child plus the frequency of app'ts is significant...we went 1x a month or more for years, then every six months) but for us it was THE best thing.

As I mentioned, amblyopia does occur more often in NF (possibly 10%) so hopefully that is what's going on with your son.

Do keep us posted.

Cindy

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Hi everyone
I used to wear spectacles in 2006 i had gone laser treatment to remove the numbers
I had more number on left eye but right now i can see well without wearing spectacles
sometimes i have problem due to NF1 but it has not much affected my eyes

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Get him an MRI asap. I'm 25 now and was diagnosed when I was 3. I didnt realldddddddddddddddcjfjdjy have ision problems till I was 7 but, once they started I received MRI'S regularly to monitor. Currently my vision continues to worse n. It has yet to plateau. I'm trying to find a good opthamologist comfortable with opticglioma and Nf, which is quite difficult after turning 21 and reaching the age limit for children's hospital

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