Eye exam?

[peglem]

Its occurred to me that with Allie's photosensitivity, that I should get her an eye exam. She hasn't had one since she was @ 5yo and she's much harder to examine now. Back then, I took her to a "behavioral optometrist" and all they could really tell is that her eyes were structurally normal, but couldn't really say about her vision. It has been suggested that she may have a detached retina (possibly, the way she's banged herself around). Honestly, I just don't see how anyone could complete the exam. What have you guys done as far as eye exams go? Especially if you have very difficult to examine(uncooperative) and/or nonverbal kids? I think Allie would try really hard to cooperate, but just not be able to.

[Mother's Heart]

not meant to be a nosy question...but what area of the country do you live in? I know an outstanding ped ophthalmologist in St. Louis who could do it. You're not close enough to get there? His heart and his focus is on treating special needs kids. They can do this at his office.

my daughter had extreme low vision. She first saw an ophthalmologist at 17 months of age....horrific and useless/harmful experience that I foolishly repeated 4 times in the next year. Then we went to see Dr. T. in st. Louis (only got there because he brother was born with a need for urological surgery).

Coming home from the first doctor she would cry for the rest of the day and would have nothing to do with other people for weeekS! As we left the first visit to Dr. T (she was 2yr9m then) she said, "Mama, can we come back tomorrow to see Dr. T. the doctor who loves me?"

Dr. T has loved her, and her outrageous asd brother for over a decade, well her for 14 yrs. I've always appreciated him but even more so now snce last year he 'gave' my blind child normal vision. :)

and the partner we were seeing with my ds this FAll, nor any of the staff, even batted an eye when my son walked into the exam room with us and SLAMMED the door so hard that the whole clinic shook and showered the entire room (and all of us) with not dust from the ceiling but actual particles of the ceiling tiles. just like a little snowstorm. Zero negative reaction from the doctor, other than amazement at the impressive results and absolutely no reaction from the rest of the doctors/staff in the clinic. :) (He REALLY rattled the building, inside a HOSPITAL! this was no mean slam :D) The child voluntarily asked me to apologize to the doctor for him later in the appointment and the dr. turned to him and spoke with great respect and understanding. no problem, and no big deal...this was just natural day-to-day for them.

anyway...being nonverbal doesn't prevent an eye exam. I suggest you find a good ped ophthalmologist. The pt doesn't actually need to participate for them to get the exam done. It is an objective exam and they should be well practiced in getting kids of all sorts to perform the behaviours automatically that they need to get the information they want. It's mostly subtle tricks and observation on their part, not cooperation from the kid, though that helps of course. ;)

A possible detached, or partially detached retina isn't anything to mess around with. I would also assume that if it were a matter of critical necessity they COULD do an exam (especially of the retina) under sedation, like dentists sometimes do for our kids. We've never needed to go that far exactly...though there've been exams and measurements done while my daughter was under anaesthesia.

their lab person did a VEEG on my son a few years ago....visual exam accomplished with a computer and eeg leads and he was HORRIBLE! Still they managed to get information.

[LIZARD]

I would get an eye exam and an MRI. Photosensitivity can be a symptom of papilledema, which often means pressure on the optic nerve. Though it can probably mean many things, I know it in my life as an early sign of increased CSF pressure due to hydrocephalus (which can be indicative of shunt malfunction), but it's worth a look for anyone and everyone. It can be a sign of simple partial seizures as well, which I also have.


Good luck...

LIZARD :)

[peglem]

The doc in St. Louis sounds wonderful, but alas! Its too far from Phoenix. Allie finally has her neuro appt this Friday. The pediatric neuro she's seeing specializes in headaches(I'm told) so, I guess I'll discuss it with her and I really do want to get an MRI anyway, to see if there is damage from Allie's head banging episodes. There is lots of external damage! I've been told if she fractured her skull, she'd be throwing up...but, she's so darn atypical. The last guy we saw (neuro-psych) claimed that she didn't need an MRI because "she won't bang hard enough to hurt herself." This photosensitivity thing has been since then though. I sure need some answers and solutions.

[mrsdoubtfyre]

My son was born blind. We had umpty ump visual exams starting at 8mos.

He always reacted severely to them. And then after we switched doctors at
age 5, the new opthamologist told me the atropine in the drops to dilate the
eyes gets absorbed in kids and causes behavior changes. I caught her watching us (new patients that we were) from behind a door in the hall way. When I asked her what she was doing, she said she was observing his reactions to the drops.

My normally cooperative son became hard to control, acted out and even kicked
walls etc after the drops were put in. Needless to say the visits were hard on both of us. As he became older, he was better, but when a toddler it was very pronounced, the drug effects.

My son regained most of his vision, but he is a bit impaired to this day.

[peglem]

My normally cooperative son became hard to control, acted out and even kicked
walls etc after the drops were put in. .

Those drops are anticholinergic and Allie already has problems with her cholinergic system (huge pupils most of the time), so she acts that way w/o the drops!

[Isabelle]

because of banging his head, at the ER his eyes were examined for damage, so far so good. cross your fingers.
at home we test his eye sight asking to read small, smaller flash cards with words/objects he is familiar with and a few new ones. he can read. he can see far, we tested it with jelly beans (what is it?, tell me the colors? how many?) and other small foods.
the size of his pupils are normal ALL the time.

[rbear4]

We are fortunate in that there is a practice near here where the eye-doctors are husband and wife and parents of an autistic child. They are well known in the area as they often speak at different local things. Many of the local parents of ASD or SN kids go to them.

Previously, taking ASD son to eye doctor was a night mare but he is significantly near sighted. Going to these doctors has been much better even if he has a behaviorally difficult time (which he has) they have been able to get done what they need to because they understand how.

If you can find someone who is developmental or specializes I think it would be very helpful. Then the next step is getting her to keep the glasses on if she needs them. That was a trick in itself but after a few years we seem to have mastered it.

[AKF]

We haven't had trouble with eye exams, but I would recommend that you find a good pediatric opthomologist. I'd bet the neuro doctor can recommend one to you.

[peglem]

We haven't had trouble with eye exams, but I would recommend that you find a good pediatric opthomologist. I'd bet the neuro doctor can recommend one to you.

That's what I'm hoping for. I checked with the Southwest Autism Research Center and the only eye doc listed on their site is the one she went to last time and I really don't think they can handle it, unless they've improved. I think this one is listed, not because they are good at examming uncooperative children, but because they offer vision therapy services(Irlen lenses-that sort of thing).