I need advice on amblyopia and strabismus

My dd is 5.5, and was dx with strabismus at 10 mo. We patched off and on until she was 3, but it was only a temporary fix--the strength of the muscles would deterioriate over time. The last time we patched, she was nearly 4, and she was having horrid temper tantrums with the patching. We finally figured out that the patching was giving her headaches (she said she felt like there was a spike in her head ). Talked with the opthalmologist, and he explained that surgery was the next option (and previously, he had said that surgery was inevitably in the future, just not currently necessary).

Since I was unwilling to do surgery at that point, I looked into alternative tx. Now, dd sees a chiropractor who does sacral-occipital technique (SOT), and it has really helped her eyes. Basically, she is gently manipulating the plates in head until they are aligned correctly, and the muscles automatically follow suit. We are having a lot of success with this method (and it has helped with her sensory issues, as well). I highly recommend trying it before resorting to surgery!

our experience with strabismus...

dd was diagnosed with strabismus at 8 mos. we took her to a pediatric opthalmologist and he prescribed glasses and one hour daily patching of weaker eye. then just glasses. i was interested in avoiding surgery and met several times with a vision therapy guy here ( we moved from the country in n. ca to los angeles) and he prescribed a different pair of glasses - stronger and some physical exercises. dd was too young for the more involved vision therapy. in the meantime i did some research and got several referrals from friends (and friends of friends) who had had good experiences with the Jules Stein Eye Inst. at UCLA. one had surgery the other didn't.

once we started there i just felt like we were in good hands and after another change in glasses we decided to go with the surgery. i have to say that it was a hard experience for me but seems to have a made a great difference for dd. she just opened up after the surgery - laughed more, etc. i think her vision was difficult for her - she was using one eye and then the other and her little brain was having to put together that information after the fact. i will also say that being able to look her in the eyes has been amazing for me and i think it also helps with her socialization with other kids.

so far we have not gone back to vision therapy, although i think we will consider it once she is a little older and can do the exercises. surgery is really not a complete cure. it is usually cosmetic with some improvement in vision, rarely do they get true stereo vision and perfect vision with surgery. dd will probably always have depth perception issues, etc. also, the surgery is often not a one time thing, they may need further surgeries in the future.

vision therapy is usually not covered by insurance - expensive!

my main advice with surgery is to find a doctor who does it alot and you feel you can trust. worth the travel to a major city.

sorry for such a long post!

cecil

Thanks so much everyone who responded. Rowan's next appointment is on August 30. I don't know what the Opthamologist will say, there probably wont be much improvement because DS REFUSES to wear his glasses, he's alright with the patch but the glasses make him really angry.

I will relate my experience with my now 12 year old with ONH (blindness in one eye) He had rapid nystagmus, amplyopia and extropia. There were two schools of thought when we discovered his eye disorder (he was 6 months at the time) One was to patch the unaffected eye or to later have surgery. I thank God I was determined to patch him, which was extremely difficult, he was patched for 16 hours per day until he was two! Today at 12, no one can tell he is blind in one eye, there are no signs of amplopia or extropia, and he hasn't require the eye surgeries that the eye doctor that didn't want to patch said he would need. I am a strong advocate of patching early and consistently.Just my personal experience!

DD has strabismus. The first doctor wanted to do surgery. We got a second opinion and he said surgery will not help her. The surgery would leave her with an eye that wanders out and can't have anything done to help.

Try getting a stubborn 3yo with Down syndrome to wear glasses. He said patching would be even worse. So, I don't really know what we are going to do. Half the time I can't even tell if she is looking at me.

Not much help I am sure. I agree on the surgery. My SIL said eye surgery isn't fun. She has had it twice and it was not very uncomfortable from what she said.