9 yr old with uneplained loss of vision in one eye now losing vision in other

[hayesemae]

My son was 7 when he lost vision in left eye, he has retinal dragging, granules and fibrous bands 400/20 , we have had many possible diagnosis but all the testing has come back negative , toxoplasmosis , retinablastoma, Fevr , norries desease, and many others. we have had genetic testing done also which showed nothing , he has stayed stationary for 2 years now he is losing vision in his right eye , as of march at his last optometrist  exam  his vision was 20/20 in right eye , now it is 60/ 20 for the last 2 weeks he has been having eye pain , seeing a black dot in center of vision which he is constantly turn to try to see around we went to retinal specialist yesterday and was told it is not retinal related but does not know what is causing the vision loss, we are very scared and do not know what else to do because we have taken him everywhere and nobody knows what is wrong   do you have any possibilitys he is 9 almost 10 now . if is sytems started at the same time as vision loss he has lost that much vision in only a few weeks but we know less than 5 months

[Forum-OD-MP]

sorry.  i have no idea.  this one is out of my league big time.   good luck.

[RunningL8]

Try to go to the Mayo Clinic in Rochester, Minnesota.  They see see highly unusual cases all the time and can assemble a team of world-renowned specialists to work together.  Two years ago I was referred to Mayo, and I found the cost unbelievably reasonable (I think the care there must be subsidized by grants).  As my local doctor said to me at the time:  "Medical school trains doctors to look for horses, but sometimes you are actually looking at a zebra, not a horse...."

[hayesemae]

thank you for the info on the mayo clinic , We are scheduled to go to another Specialist Monday , if no answer there we are gonna go somewhere else, we have been to specialist in boston, with no luck also ,so any suggestions are  greatly appreciated

[hayesemae]

thank you for the info on the mayo clinic , We are scheduled to go to another Specialist Monday , if no answer there we are gonna go somewhere else, we have been to specialist in boston, with no luck also ,so any suggestions are  greatly appreciated

[hayesemae]

thank you for the info on the mayo clinic , We are scheduled to go to another Specialist Monday , if no answer there we are gonna go somewhere else, we have been to specialist in boston, with no luck also ,so any suggestions are  greatly appreciated

[young at heart]

Has anyone done an MRI to see what is happing or a visual evoked potental?

[hayesemae]

yes hes had many test done I think the only test he has not had done is the dye test for eyes, they see the dammage but dont know why or how , when he goes monday they will probably do another Mri for this eye ,We are hoping somebody can give us some answers before he loses any more sight in his good eye

[NURSELPN]

If there is no answer from your specialist Monday, I would put him in the car & drive to the nearest major medical center...a teaching hospital like that at a  university in your state.
Otherwise, Mayo or possibly Cleveland Clinic. They have specialist on site in any area you would need & they are up on the latest information. Take him right to the ER where ever you choose to go & they will streamline  into see a specialist. Otherwise you may have to wait & that is precious time you can't afford right now.  Good Luck & God Bless,
Please let us know how he is doing.   TJ

[hayesemae]

The specialist is having him have a MRI on thursday ,then if that shows nothing then  a bunch of blood work , and a couple of other test , if he can not find the cause then he is  gonna send him to Johns Hopkin In Maryland ,Once again  This Doctor has never seen anything like it.  Its the same thing every doctor says , but at least he is gonna do other  test  and if he doesnt find anything send him to  another place, thank you all for your concern , I will keep posting the results as we go , Welcome any other suggestions .