So, we went back to the opthamologist today to see if bifocles woudl help. I also asked them about the perpherial range test. Rebecca did not like the bifocles at all, so that is out.
As far as the range test goes, she said that it would be very difficult since she is Deaf and the test involved hearing and pushing a button. I said that I know that there is perpherial loss, I just wanted to know how much. She said there would be no way of telling. I then said that they school is requesting it - hoping that would get her moving. She finally got up and had Rebecca cover one eye and then put some fingers out the side and asked if she could tell her how many fingers. Rebecca got everyone of them wrong.
So, all that was put down was that she has profound perpherial loss. Well - duh!! Sorry, I guess I was just hoping for more like a number of loss so that we would know if it was getting better or worse as time progressed.
Everytime I leave one of these appointments I feel like I have been beaten over the head. Do you feel like that? Do you feel like you are pulling teeth to get them to answer questions or do additional tests? I did not think that I was being unreasonable asking for the test and I thought it would be helpful especially since they did not locate the RP. Why does it have to be so difficult? I take my hearing child to the doctor and I do not have all this trouble - we have even taking her to specialist and did not have this kind of trouble. I do not understand, shouldn't you be more caring & willing to get more information for a child who you know needs it.
Next time we are going to a different opthamologist. Am I being ridiculous or is this as good as it gets?
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many major medical universities provide interpreters for their hospitals/clinics. One additional benefit is that they are up to date on latest research. Is there one nearby that you can try?
Everything will get better!
There are very sophisticated tests that measure the range of peripherial vision and the progression of RP.
However, from personal experience, I can say that they aren't fun for a child to endure. It is better to be patient and wait until Rebecca is a teenager and can understand the tests and is mature enough to take the discomfort.
The tests for field are tiring in that they take tedious to complete and one must stay still and alert for quite a long time. A tiny red dot, sometimes very faint, teases one's limits of the visual field, and this can be frustrating because one is not sure if one is imagining the red dot.
The electro-oculography tests involve wearing contact lenses with electrodes implanted in them and undergoing flashes of light in a globe. These flashes are sometimes painfully bright and the tests repeat for a very long time.
You can tell more by observation and keeping records on how the child does in dim light, in visual field awareness, and comparing notes a year apart. Use the same lights, the same room and the same time of day for each observation. This will also be useful functional information for the opthalmologist that does the more intensive testing.
For now, just give Rebecca all the visual stimuli and as much education as she can get by visual means while building up her hearing and tactile input for the future. Keeping a normal atmosphere will be supportive of this.
Where do you guys live? I can find out where best place for you to go to have her tested for perpherial range test. Or you can go on internet and look for an eye doctor (I can't even spell the medical term for it!) that specializes in Usher's Syndrome and Retinitis Pigmentosa (RP). So the doctor can tell you what to do about her US. Perhaps learn something to prolong her vision. It's no good to see a regular eye doctor. Best to see a specialist. Hope that'd help. You can also contact your local Lion's Club for help.
Hi I am an Licensed Optician for 18 years. Maybe I could help her or something. Bifocals isn't great idea for starter. Email me or vp me if any question.
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