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specialist recommendation for child
Posted: 2008-01-11 09:43:22 By Abby T
Hello everyone,
I would like to hear your recommendations on which specialist to take my 11 year old son to. We live in Rochester, New York and would like to go to a doctor who specializes in children. His diagnosis is rod dystrophy, but his current doctor is in the process of determining whether or not he is having complications due to this diagnosis, or if he has another diagnosis on top of rod dystrophy. So, a doctor who is familiar with associated disorders would be an important factor also. Thank you for your help.

Abby

Re: Re: specialist recommendation for child
Posted: 2008-01-11 15:03:16 By Abby T
Hi Darran,
We have already been to Mina Chung at the University of Rochester and I was NOT impressed by her at all. She did the ERG on him and gave the diagnosis to me on a piece of scrap paper. She gave me NO recommendations or people to contact to help him and the worst thing was she verbally told me one thing and wrote up in her formal report(to his pediatrician) another thing. All of my son's symptoms are eye related and his doctor now (Dr. David Smith neuro-opt.)wants to be careful in assuming that the symptoms are all related to RP. I think he is looking for a complication related to RP. He has a sleep study tonight to rule out sleep apnea. This seems far fetched to me, but I guess lack of oxygen to the brain can cause vasoconstriction in the vessels which may be causing some of his odd eye symptoms (rainbow colored spots, flashes, burning and stinging). Also, he's had 2 field tests--the results of the first one was 20 degrees left in both eyes and the other came out as slightly restricted (didn't get actual degrees on this one). The high variability in the field tests prompted him to do the sleep study though. Thanks,

Abby

Re: Re: Re: specialist recommendation for child
Posted: 2008-01-11 15:15:19 By Darran Z
There is a paper out someplace I read (posted in an FFB publication a few years back) that RP could be considered a cardiovascular disease due to the low Oxygen/blood circulation of the blood vessels in the retina. It sounds to me like the current doctor is unfamiliar with RP and all the characteristics associated with this. If the ERG is abnormal, that would be the nail in the coffin for a diagnosis, and all other symptoms would be associated to RP. That is the consensus among the RP experts. Everything you indicated except rainbow and stinging are associated to RP.

Even if there is a variability in the visual field there are a few issues that factor it. One is the skill of the technician administering it and the patient themselves. I've come out with "bad results" but were due to either technician or patient error. If there is a few degrees off, it's considered acceptable.

Darran

Re: Re: Re: Re: specialist recommendation for child
Posted: 2008-01-11 15:57:38 By Abby T
yes--I agree that while this doctor IS an excellent doctor in general, I wouldn't call him an expert in RP. He specializes in hard to diagnose conditions within the neuro-opt field. I don't necessarily think RP is a hard to diagnose condition UNLESS you aren't seeing a specialist--which is why I need to get to one! This doc wants my son to do another ERG--this one is a MERG which he didn't have done the last time. What specifics would he be looking for with a MERG that a regular ERG can't show? Thanks.

Re: Re: Re: Re: Re: specialist recommendation for child
Posted: 2008-01-11 16:07:02 By Darran Z
I have never heard of an MERG so I couldn't tell you.

Have you gone to Resources at the top of the FFB homepage and click on Physician Referral? That is the online version of the FFB doctor list. It might be helpful. I'd suggest try to find someone in Buffalo as well.

Darran

Re: Re: Re: Re: Re: Re: specialist recommendation for child
Posted: 2008-01-11 18:12:45 By Abby T
A MERG is multi-focal ERG. Yes, I have been to the Physician referral list already. I'm not sure how to choose--I'll research the ones in Buffalo, though.
Thanks.

Re: Re: Re: Re: Re: Re: Re: specialist recommendation for child
Posted: 2008-01-12 02:48:59 By Darran Z
You can call and ask specifically what their experience/background is for retinitis pigmentosa (don't say RP as some people mistake that for RoP, Retinopathy of Prematurity).

Darran

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