I hope someone can help me. I have DRS and i am now wondering from others does there face, temple arm, hand and leg swell up. It is my left side this happens...
13776
sta.cruz_terrazas
sta.cruz_ter...
Apr 6, 2011 6:24 am
My eight month old son was recently diagnosed wth Duanes and my wife and I are investigating potential developmental impacts/delays which may occur as our boy...
13777
barbzwired
Apr 6, 2011 3:49 pm
Welcome David. For most people Duane's Syndrome it is a stand alone, isolated mild condition that only affects eye movement. So, for most kids you really...
13778
smancini711
Apr 7, 2011 12:32 am
Well said Barbara! David my son is almost 8 months old and he was diagnosed recently as your son, so I know exactly what you are going through, we have Early...
13779
nikoletta_stover@...
nikoletta_st...
Apr 7, 2011 1:06 am
Well my son has type 3 duanes and is going blind due to can't have surgery but duanes syndrome is due to the 6 th nerve absence and its important for more than...
13780
Don & Sue Ware
warehousesue
Apr 7, 2011 1:29 am
Hi David and Welcome Our experience over the last 14 years with our grand daughter with Duane's, has been that the care of a paediatric ophthalmologist who is...
13781
nikoletta_stover@...
nikoletta_st...
Apr 7, 2011 1:32 am
I agree but I have a low vision doc I travel to but well worth the travel time of 2 to 4 hours but they do wonders for him Sent from my Verizon Wireless...
13782
sta.cruz_terrazas
sta.cruz_ter...
Apr 7, 2011 3:56 am
Thank you for all of your responses. They have been very helpful. I sincerely appreciate the advice. My wife and I scheduled a trip to Boston in June to...
13783
anitamjohnson@...
Apr 7, 2011 7:26 pm
Closer to home is UCLA, the Jules Stein Institute. That has been the cutting edge place for developing a surgery to give movement to the eye. They see many...
13784
Jenny Email
kayandannsmom
Apr 8, 2011 8:43 pm
I had my 4th and only successful surgery at The Jules Stein Institute at UCLA. I traveled there from Oklahoma. Sent from my iPhone...
13785
calanthaa
Apr 9, 2011 11:35 pm
Hi Hanaa - I would recommend giving her simple answers, and add more to the answer if she seems to want more. Also, I think it's important to be very...
13786
calanthaa
Apr 10, 2011 10:46 pm
Just popping back to say that I didn't answer your question about additional referral or testing, because I don't know very much about that. Maybe someone else...
13787
anitamjohnson@...
Apr 11, 2011 6:31 pm
I remember several years ago when I took my young grandson into a store where a lady had a large birthmark on her face. He asked, "What's wrong with your...
13788
wmslauren
Apr 18, 2011 1:13 am
I am a 27 year female who just had Strabismus surgery on both eyes, Tuesday. Since the surgery I have been experiencing severe headaches. My eyes are still...
13789
Jenny Email
kayandannsmom
Apr 18, 2011 1:18 am
Headaches were very common after my surgery. There was nothing special that I did other than take Tylenol. Mine went away after about a week. Sent from my...
13790
wmslauren
Apr 18, 2011 1:48 am
Hi Lana, I am a 27 year old living with duane's. I just had surgery this Tuesday. I was bullied a lot during school and into adulthood. I am very pleased with...
13791
wmslauren
Apr 18, 2011 1:55 am
Thank you. When were you able to get back to your normal routine? I am having trouble reading everything, especially the computer because to the light. I had...
13792
abc4ustore
Apr 18, 2011 1:48 pm
Many thanks for your advice.it gives me the fact that i have to deal with my daughter's syndrome not hiding from it.when she had her second surgery ,i refused...
13793
calanthaa
Apr 22, 2011 8:51 pm
I think your instinct is right, that it's time to start talking with her about it, especially since she's asking you questions. Please forgive me for being a...
13794
Kirk Lum
seafood_777
Apr 22, 2011 10:45 pm
Just made an appointment for surgery in which they'll examine our 10 month old's eye muscles and perhaps make some correction. (He has Duane's - Type 1) I...
13795
nikoletta_stover@...
nikoletta_st...
Apr 22, 2011 10:58 pm
My son did that and he is no longer type one he is type three which is even worse he can't have surgery if he does he can go blind . I wouldn't do surgery this...
13796
nikoletta_stover@...
nikoletta_st...
Apr 22, 2011 11:00 pm
Correction Laura Windsor Sent from my Verizon Wireless BlackBerry...
13797
calanthaa
Apr 23, 2011 8:54 pm
I have bilateral Duanes, type 1. Both of my eyes can move slightly toward the ear, but only a little bit, not as far as normal movement. I can't answer your...
13798
calanthaa
Apr 23, 2011 11:31 pm
From what I've read, type three is quite rare. That means your son's eye can't move either toward the ear or toward the nose, right? Does he have another eye...
13799
nikoletta_stover@...
nikoletta_st...
Apr 23, 2011 11:51 pm
Yes duanes type three is rare and you can't have surgery due to the sixth nerve is gone in surgery they rewire it to the nuclei and if you don't have it they...
13800
calanthaa
Apr 24, 2011 3:18 pm
Thanks for explaining. I'd never heard of the surgery you describe to rewire the sixth nerve to the nuclei. It sounds like a very specialized procedure that...
13801
smancini711
Apr 26, 2011 7:18 pm
I am actually going to be doing a fundraiser for the month of May and I am going to donate 10% of the sales to the Engle Laboratory - Children's hospital in...
13802
jfalls70
May 3, 2011 2:17 am
I'm a 31 year old male, with Duanes syndrome of my right eye. As a kid, I was teased about being "cross-eyed" when that really wasn't the case. It was hard...
13803
smancini711
May 3, 2011 10:32 am
Thanks for sharing! It gives me hope for my son. He's only 8 1/2 months old and as a mom, I am worried about the bullying and picking on by others when he gets...
13804
jfalls70
May 4, 2011 12:48 am
Well, kids will be kids and you can't do anything about the teasing. Honestly, I don't even think about it anymore. It's something I've lived with forever,...
