To All, Please excuse the spam that has appeared in the last few months from the group. The account has been deleted as well as the spam messages. If problems...
114
purpleblue899
Aug 16, 2012 6:36 pm
Hi. Regarding the recent tests undertaken in New York of artificial retinas, has anyone with a little more knowledge looked into this or know whether this (if...
115
l2s96
Aug 22, 2012 9:27 pm
Greetings everyone, This group has been of such a help to my husband and myself since our son was diagnosed with adFEVR in May. I have been wondering if maybe...
116
William Hassett
whassett
Aug 23, 2012 7:53 am
Hi Angee, Â Â Â I hate to be so abrupt but you need to go to Detroit and see Dr. Trese or Dr. Capone (same practice) asap. Â They deal with FEVR through...
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Kristen Nesser
knesser2
Aug 23, 2012 11:44 am
Hi there I am so deeply sorry you are going through all this I agree you need to see dr Trese. He and his partners have the largest fevr database in the world...
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l2s96
Aug 24, 2012 2:15 pm
Hi Bill, Thanks for your response. After posting my initial message I realized that I had really answered my own question. I must take him to Dr. Trese and...
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l2s96
Aug 28, 2012 3:25 pm
Thanks so much for your reply, Kristen. I appreciate your advice and am taking it. Hopefully Dr. Trese can shed some light on this disease for us. So far,...
120
simleis1
Sep 21, 2012 2:08 pm
Hi, who can give me some advices? --- Recently my sister's son is diagnosed of FEVR. The boy's eye sight is bad. My sister did a test in a hospital. And the...
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Kristen Nesser
knesser2
Sep 21, 2012 6:43 pm
Hello This a genetic disease. There is nothing you can do to prevent it You should get genetically tested since the gene mutation in your family is known Talk...
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simleis1
Sep 24, 2012 8:32 am
Thank you very much for quick reply!!! Since there is nothing I can do for my unborn baby, I will simply be happy and pray for him......
123
barbiecbg
Oct 18, 2012 6:50 am
Kohls coupon codes 3o% <http://kohlscouponcodes30p.springnote.com/> Now there, why don't you treat yourself, or maybe your family? Everyone has a craze about...
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ecperkins
Nov 6, 2012 3:15 am
Has anyone pursued genetic testing to help confirm a clinical diagnosis? I have FEVR and my 7 year old daughter has it (unfortunately diagnosed after she went...
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barbiecbg
Nov 23, 2012 10:18 am
Kohls Black Friday 2012 November 23 Don't miss out 2012 year huge discounts of black friday November 23, 2012 at kohls department store for clothing, bed &...
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ljaemj
Dec 1, 2012 7:10 pm
My son has FEVR. He was diagnosed T age 3 and is now 14. He had a successful cryo surgery at age 10 to stop bleeding causing retinal detachment. Now, he has...
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Max Bodnar
maxkonji
Dec 2, 2012 1:58 am
Hi We have been to see dr Trese in Detroit and highly recommend him and his colleague Dr Capone jnr Sorry we don't know of any in California Max Sent from my...
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evajoys
Dec 8, 2012 6:44 pm
Hello I have been very glad to find this group. My 2 1/2 year old son was diagnosed with xFEVR two weeks ago. I think my 9 month old will also be found to have...
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William Hassett
whassett
Dec 8, 2012 10:22 pm
My permanent residence was in Boston but I was living in Paris when we discovered my daughter had FEVR. Â The retinologists in Paris told us to see a Dr....
130
Kristen Nesser
knesser2
Dec 9, 2012 3:51 am
Hi there We love in Florida but also see dr Trese. We saw him right away our doctor in Miami told us to. The two of them correspond about our sons care. You...
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gwkuma007
Dec 9, 2012 4:03 am
We received conflicting opinions about patching our daughter's good eye but we decided yes and it worked out well. Although not great our doctor has been...
132
evajoys
Dec 10, 2012 10:46 pm
Thanks all of you for the information and encouragement. This is a strange time of processing what's before us but we are beginning to have faith that, no...
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Kristen Nesser
knesser2
Dec 11, 2012 1:44 am
Dr Trese office accepts many out of state insurances They are used to seeing hose kind of patients No matter what insurance we had- blue cross/ Aetna It has...
134
l2s96
Dec 11, 2012 7:58 pm
Hi there! My 6 year old son was diagnosed with FEVR this past May and we have had a very incredible journey since then. We live in Houston but decided (with...
135
ropardlist@...
ropard
Dec 13, 2012 1:43 pm
Hi all, My name is Paula Korelitz and I am the Outreach Director for the Vision Research ROPARD Foundation. I run the Children's Low Vision Resource Center...
136
gowri
gowri_dev
Dec 14, 2012 12:32 pm
hi, My son is 4months old and affected with FEVR and got operated for both the eyes. Doctors said that the we cant expect 100% vision and one eye has been...
137
Kristen Nesser
knesser2
Dec 14, 2012 2:28 pm
I was told my son would have at best light perception in his bad eye. Guess what? He is able to discern colors shapes and pictures when patched I'm not sure...
We were told much the same about our daughters eyes but started patching her bad eye at around 1 yo. She didn't like it at first obviously. I'd walk around...
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hsiao_su
Dec 25, 2012 2:14 am
My son sees Dr. Eugene de Juan at UCSF. Hope that helps....
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tcwt2000
Dec 26, 2012 12:07 am
It is best to see Dr. Capone in Michigan. You will be in good hands....
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Paula Korelitz
ropard
Dec 26, 2012 1:42 pm
If you do come to Michigan and see either Dr. Capone or Dr. Trese, please also plan on coming to our Children's Low Vision Resource Center. While there is a...
