Finding a doctor?

[ohbilatmicromom]

Hi Jessica
I read your post and just want to tell you even if your child is on Medicaid your care should not be any less!!
You are entitled to the best medical care for your son regardless of what medical plan you have. Our son is also on Medicaid due to his disability (legally blind) because we have private health insurance that will NOT insure him.
As far as not being fitted for conformers due to vision, our son also has vision and he wears clear conformers, no eye has been painted on it. Simply clear and wears thick glasses. Started off at +25 lenses plus the conformers at 5 months of age. If you go on the internet you may be able to find another opthalmologist and occularist that will be aggressive in treatment! You don't want to lose the vision he already has!!! Also when our son was a baby we used any toy that would light up to help stimulate the visual nerves.
I would definitely find another opthalmologist and occularist. You may need to jump through hoops with Medicaid, but they will eventually pay for it. He actually has Ohio Medicaid and go to University of Michigan. We have to get a separate referral each time and they have to fax chart notes of previous visits and I have to make tons of phone calls, but in the end they pay!

Good luck!!!
Michelle

[ohbilatmicromom]

Hello
I again would like to stress the fact that he can wear clear conformers and these will NOT obstruct or destroy any vision he has in his eyes I wish I could somehow attach a photo of the clear conformers so you could see what I mean. These would help the bone growth around his eyes so his face does not appear sunken. I would be afraid at this point that the sunken face would not be able to be corrected of you wait too long. As I said because your child is on Medicaid does NOT mean you are not entitled to recieve the best care possible! You just need to fight to go to a better occularist. You need to see and occularist not just an opthalmologist. The ophthalmologist does not do the conformers, the occularist does. Also the clear conformers resembles a contact lens, but much thicker and bigger on the edges to help with bone growth. We were verylucky to find our occularist to do the clear shell. also, they have some magnification so it helps his vision. He is still considered legally blind with conformers and glasses, but he has some vision!

I just again wanted to stress the fact that clear conformers will not inhibit his eyesight at all!!!!!!!!!!! I would be pushing to see and occularist asap. Our son in also on Medicaid and we go out of State to see the specialist and it is paid. We have to fight each time, but its well worth it!!!

good luck
Michelle

[suz]

Wow! I found more information in this one thread than I did all morning of surfing the internet!

My grandson, Brad needs a conformer but the dr thinks he may have very slight vision in his affected eye.
We were told since there is a possibility he may see light in that eye that we shouldn't put a conformer in it until he can be examined more throughly at age 2. He is 5 months old now.

I am thrilled to find out there is a clear conformer!!!
Now we need a good doctor here in Houston. Thank you so much for posting the information! I will have my daughter in law call Dr Mazow to see if he can see Brad.

She likes the dr he has now, but she has never actually treated a child with this disorder and I want the very best for my "Little Guy". I think we need a second opinion.

I have heard of Dr Merritt, he has a very good reputation here in Clear Lake.

Thank you so much for relieving some of my fears.
Happy Mother's Day!