[blindkid] ERG questions

Thu Aug 19 23:09:49 UTC 2010

thanks for all the info ... I am unsure if Torrie will be able to sit in 
the dark without freaking out -- some of her PTSD comes out here and she 
is very "freaked" anyway of night time and dark. I will be doing an 
email to the docs to let them know. I know this can give them the info 
they need to have, as well as what we need to have!

She has to have the anesthesia because of her spasms and her anxiety 
just kicks in. So we will be taking another trip to Miami to get this 
done. I am hoping we have some answers to this.

thanks again .... this is a great group to get info on ....
Doreen

Lenora J. Marten wrote:
> Maybe they've improved the procedure since Eric's was done.
> That would be nice! 
>
>
>
> Lenora 
>
>
>
> -----Original Message-----
> From: Marie <empwrn at bellsouth.net>
> To: Blindkid email <blindkid at nfbnet.org>
> Sent: Tue, Aug 17, 2010 2:01 pm
> Subject: Re: [blindkid] ERG questions
>
>
> Hmmm....Jack had an ERG awake and without straps. Wonder what the difference is? 
> 'll send a link to my erg post from my computer when I am able to get to it.
> r you can enter ERG in the search box on my blog if you don't want to wait...
> Marie (mother of Jack born May 2005)
> ee glimpses of life with my determined son who is developing in his own way at 
> is own time at http://allaccesspasstojack.blogspot.com 
> ent from my Verizon Wireless BlackBerry
> -----Original Message-----
> rom: "Lenora J. Marten" <bluegolfshoes at aol.com>
> ender: blindkid-bounces at nfbnet.org
> ate: Tue, 17 Aug 2010 13:47:43 
> o: <blindkid at nfbnet.org>
> eply-To: "NFBnet Blind Kid Mailing List,
>    \(for parents of blind children\)" <blindkid at nfbnet.org>
> ubject: Re: [blindkid] ERG questions
>
> here are two types of ERG's. One where the anesthesia is used and the more 
> xtensive ERG is done when the
> hild is awake. I do know that the doctor is able to determine much more when 
> he child is awake. They place
> hat looks like extra large hard contacts over each eye. In the middle of the 
> ontact is a probe which is attached
> o a wire which is attached to a machine. The reason they try using anesthesia 
> irst is that the child cannot move 
> uring the test. When Eric had the extensive ERG done, he was strapped to the 
> able so tight that he couldn't 
> ossibly move anything. He was only 5 so they left a spot open on his stomach 
> ig enough for me to rub it during
> he test so he didn't freak out. He had an ERG done under anesthesia when he was 
> ust a few months old, and 
> hat's when the Pediatric Neuro-Ophthalmologist incorrectly determined that 
> here was nothing wrong with him. 
>  would recommend trying the anesthesia first as it is much less traumatic. But 
> f the results are undetermined,
>  would ask for the more extensive ERG. 
>
> Lenora 
>
> ----Original Message-----
> rom: Doreen <doreenproverbs3 at bellsouth.net>
> o: NFBnet Blind Kid Mailing List,(for parents of blind children) 
> blindkid at nfbnet.org>; BVI-Parents at yahoogroups.com
> ent: Mon, Aug 16, 2010 5:46 pm
> ubject: [blindkid] ERG questions
>
> i, 
> ur 5yr old daughter is having an ERG done in a few weeks. Her pressures were 
> igh when the ophthalmologist did the annual exam under anesthesia but mainly 
> er acuities have declined drastically without any "reason." The doc was hoping 
> o find some kind of an answer for the decline during the exam under anesthesia 
> ut did not. (The docs did not "see" glaucoma when comparing her photos of a 
> ear ago to this exam; they also found that the macula, retina, optic nerves and 
> rainage canals are good.) The ophthalmologist is now ordering an ERG. I have 
> otten the information from Bascom Palmer (where she goes for her 
> phthalmologist's exams) on what will be done and have googled it also. 
> Pressures were: March 09 - near 20/70, distance 20/100; Aug 09 - distance 
> 0/160OD, 20/250 OS; July 2010 - 20/800 near, 20/400 distance. They also 
> eclined in Oct and Dec 2009 but she had been in school for the full day, then 
> aw the ophthalmologist which "could" have explained the decrease then. T
> he 20/800 and 20/400 are "not explainable" as it is summer time and she was in 
> he doc's office at about the same time as normal, so not much fatigue due to 
> aving to do work in school). 
>
>  am wondering if anyone's child has had this done and what your experience has 
> een. We are looking for any kind of information. She will have to go under 
> nesthesia again for the ERG (electroretinography) and the doc may or may not be 
> ble to get intraocular pressures as well as doing the ERG. 
>
> hank you .... your help is greatly appreciated! 
> oreen 
>
>
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