Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Hi Bonnie, Hope you can provide some assistance....In August went to the eye doctor ...the assistant did a few tests especially the eye chart test and got every single letter wrong. When I started to ask questions of the assistant he said I should talk to the doctor...Well when the doctor came in he looked at proceeded to tell me was cured.... His vision was 20/20 for the most part and that the eye drops were working...Unfortunatly neither the doctor nor his assistant listened when I said we stopped the drops in April...It was a very odd visit the doctor never even looked at the chart before he announced has 20/20 vision...when questioned about not correctly identifying any letters he claims was still young.and unreliable.. but knows all his letters... I remember you talking about how difficult it was for you to find some one who understands our children's vision difficulties...what type of doctor did Patty finally end up going to for vision ??? This doctor sent the report and we will get the letter today that no longer qualifies for services.... is working on keeping them but I think it would really help if I could get a second opinion from the type of doctor Patty went to.... Thanks for your help Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Hi Bonnie As luck would have it I was able to find a doctor who understand low vision issues and he has his own insitiute....I have asked him to see ....we need BESB services because our school has a difficult time understanding special education never mind anything as intricate as CHARGE...WE are very fortunate to know you....you have been so helpful...I did have a melt down today it is so hard to keep fighting ..Thanks for all the info I'll let you know how this goes with the new doctor... Thanks again Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 I think he is doing some type of drugs...legal or otherwise... the doctor was so disconnected from us when he was talking to us.....and he expected me to be astonished that I sit at the feet of the miracle worker...I realize that people feel the need to make us feel better about our kids disabilities..our ENT was afraid to tell us the was deaf...I need the truth and deal with it...how can he go from 20/200 to 20/20 in 4 months.no treatment...perhaps it is a miracle(sarcasm) I will be trying this behavioral opthamalogist who has extensive experience in low vision issues ..I'll let you all know how this works out Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 Wow a miracle cure for coloboma! *dancing in the streets* (sarcasm) Kay Re: Bonnie > > Oh, that is almost exactly what happened with Patty . Who was the > doctor > because that was almost the same wording- " She's cured " It made me upset > beyond belief. Yea right, cured. How I understand. And you will have to > fight > like crazy to get services. So, take a deep breath and find in your heart > a > calm place. That will give you strength. Then,... > > What I have found is that doctors look and really don't know about our > children's vision. I think we had been to about 8 different doctors. The > best we > ended up with was at Yale. This was a doctor named Shafronov. He was in > the > Glaucoma department. Do not go to someone named . He was > horrible. > I also didn't find UCONN children's hospitals or what used to be Newington > Children's hospital very knowledgeable on her unique vision. Doesn't > have > colobomas in both eyes with one being more involved than the other? > > What I wonder about is our childrne have cranial nerve disfunctions as > well > so with the vision I think that too is involved neurologically. The > wiring is > different in many areas so I would assume the neurological input from > vision > can be impaired, though that might not be see during a routine eval. I am > tired of hearing " the structure of her eyes show she should see better ... > blah, > blah, blah. " So what about the structure alone! We knew she didn't see > as > what those professionals said she did. When she finally got diagnosed > appropriately her comment was something like- why didn't you listen to me > that's what I > have been telling you. > > Oh, and when Patty didn't meet criteria because her vision was 20/60 I > think, > she remained on consult with BESB as a special service. Now I know she > should have had more services than what she got. If you disagree with the > diagnosis then go elsewhere. Wish I did way back then. Ask at the Yale > Opthamology > Department > 330 Cedar Street > New Haven > > > > Good luck. I'll look for the other names of the doctors who destroyed > Patty > getting appropriate services because of their lack of expertise and > incorrect > diagnosis. > > Bonnie > > > Quote Link to comment Share on other sites More sharing options...
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