I would have to agree never tell them they cant do somthing let them try and they will figur it out. My parents were told that I was blind when I was born up to about 2 months slowly my vision got better. My life is pretty normal but I can only drive from dawn till dusk (atleast thats what dmv says) but I have noticed it is getting worse now that im getting older but maybe thats just age and stress
I want all the parents out there who have watched this video because their child has nystagmus or another visual condition that everything is going to be okay. Nystagmus tends to get better as you get older. You become better at focusing and may even be able to stop the movement altogether when focusing on an object.
Your kids will be fine. If you treat them normally they will be normal. Never tell them that they can't do something bc of their vision and they will never think that way. They should be the ones to decide what they can see. I have ocular albinism and nystagmus. My vision is 20/170. I live on my own. I am currently in grad school. I use telescopes and magnifiers for school work and virtually all reading. I can drive. My parents were told that I was blind at 3 months old.
My son was diagnosed at the age of 4 months after having many surgeries. He is now 5 and had 2 surgeries on his eyes. Nagstagmus does not go away. But it has became our normal. Many people ask and we will explain. We were told he got it from lack of oxygen during previous surgeries! I have already taught my son Never say Never! He is 5 and has survived 14 surgeries. This precious baby will be just fine!
I am a mom of a almost 10 year old boy with CN who has yet to be operated to fix the eye muscles. My comment is related to school, I gave the school office and his teachers information on CN so they could be aware of it's implication (reading medium/small print from far is impossible for him). I taught him not to tolerate any bullying and he hasn't, and to always know who he is and not to not let others define him and so far, so good! best of luck to you :)
My son was diagnosed with nystagmus at 2 mo. and when you read about it, it makes you sad. HOWEVER, my son is six now and is doing VERY well. He can't see his eyes move when he looks in the mirror. He also has a astygmatism (sp?) and wears glasses. He compensates well because school and reading and learning are VERY EASY for him.
@karmilovich your son sounds exactly like mine!! diagnosed around 3 months. He is six now and wears glasses for astygmasism and does very well in school. He did have surgery to correct his head tilt (though still there slightly). He plays ice hockey and street hockey. My only fear is that kids in school will start asking questions - i hope they will not make fun of him.
All the best to little Gabriel, he is so cute! I have nystagmus (Congenital Idiopathic type, it runs strongly in my mother's family) and have done well with it, adjusting to my condition throughout my life. There are things I cannot do well due to my condition, but my life is happy and fulfilled otherwise. Best of luck to Gabriel and his parents. Regards.
I don't know, but maybe it could be a spasmus nutans, this occur sometimes on babies, but it dissapear in the next two years. I hope, the child got this type of nsytagmus, it's the "easiest" form, that dissapear later.
Neurotoxins in many food products, vaccines and exposition with neurotoxins (many deodorants for exmaple,...) can attack the neurones and damage them. This can release such neurologic illnesses, most of the people don't know that, how sad.
He has been followed closely by his eye doctor since 3 months. when i heard his diagnosis it broke my heart. He had surgery last January to all 4 eye muscles to correct his head tilt. it was so hard when he was little to be asked all the time what was wrong with his eyes & why he tilts his head. after his surgery the head tilt is nearly gone and with his glasses he has nearly perfect vision. the shake i am told will never go away but he is doing very well - everything a 5 yr old should.
Looking at this video reminds me of my son - now 5. around 3 months I really noticed that he couldn't stay focused on my face. His eyes would shake (a bit faster than this video). When I took him to his routine appointment - the NP looked at me and said "do you think he can see you?" I nearly fell to the floor when she asked me that. She called in another doctor who confirmed he "could see" but was not sure how much he could see. We were refered to a Pediatric optimologist who IS WONDERFUL
@Metalheaddox Yes, he still has it but surgery was done to lessen his head turn which was pretty dramatic. His head turn is nearly gone and the nystagmus has lessened a little but is still noticeable. There is nothing he can't do. He does wear glasses everyday all day. He has a Stigmatism and the glasses help a lot. Despite his nystagmus, he tests near perfect vision with his glasses on. It is remarkable how kids adapt...
Your baby is adorable! My son also has this, it too was discovered as an infant. He is now 11 and is FINALLY scheduled to have the surgery 10/15. I put it off so long due to other health issues. His doctor is optimistic for vision improvement. (Dr. Robert Burnstine, at Akron Children's Hospital in Ohio). My son also wore glasses for a few years, but the doctor told me a while back to let him stop wearing them, as they actually do little to help, due to the nystagmus. God Bless!
Hi there. Can you please advise if Gabriel does have Nystagmus? I notice Gabriel is now wearing glasses. Our six month old eyes began to show nystagmus at 3 months and were hoping its transient infantile nystagmus as all other checks with his eyes are ok. Any information you can provide is much appreciated.
Gabriel was diagnosed with nystagmus at 7 months. While at the doctor's office the pediatric ophthalmologist noticed that the curvature of his eyes was quite far-sighted for his age. He was given glasses and he has worn them for the past year. His vision greatly improved and the nystagmus abated considerably. Just one month ago we were told by the same doctor that Gabriel would not have to wear glasses. At present, his nystagmus is minimal.
Thank you so much. We saw an eye specialist at 3 months and was told to go away and come back in 6 months time which left us feeling very angry and empty. We're seeing the leading eye specialsit in Perth next week (7.5 months) an we hope he will have good news for us. We hope our boy John will be as blessed as Gabriel. Thanks, W&K.
To me that looks more like saccadic intrusions, not nystagmus. They are square wave jerks with a fast phase that takes the eyes off and back to primary fixation. Nystagmus, on the other hand has an initial slow phase with quick snap back.
That's how my son's eyes are. He is one and he has nystagmus. I see it especially when he's sleepy. I get extremely sad when I see his eyes moving b/c I know he can't control it. He plays and is extremely active. He makes me feel better b/c he doesn't sweat it. I can't stand the idea of him bein picked on though b/c of it. That's too much for me to bear. I'm REALLY considering surgery.
@LolaJay1 I have same feelings about my son. He is 7 months now, we were told to come back to the doctor in 3 months. The doctor said his vision is fine, but the movement is what bothers me. And I'm considering the surgery too. I can't bare that he is not just like the other kids. And people keep asking me what's wrong with his eyes. It hurts.
Yeah I feel you on that. Especially how they ask. I've had very insensitive people ask me that question. I used to skyrocket from 0 to 60 in a split second. But I notice that it is actually getting better the older he gets. His eyes don't move as much as they did. I have come to accept it. So I feel MUCH better.
my son has the same kind of nystagmus. do you find that your son turns his head to one side to focus on something? I'm not sure whether my son does it because of the nystagmus or not.
@bpdhell YES - my son has nystagmus and had a definate head turn. they find a spot where their eyes shake the least. my son's head turn became more pronounced over time and he had surgery to tighten the eye muscles and straighten his head. the surgery was a sucess and even though his eyes still shake a bit (they shake much less than before surgery) his head turn is gone. He is now 5, and he does EVERYTHING a 5 year old does. i hated the comments when he was young too!
@bpdhell@bpdhell YES - my son has nystagmus and had a definate head turn. they find a spot where their eyes shake the least. my son's head turn became more pronounced over time and he had surgery to tighten the eye muscles and straighten his head. the surgery was a sucess and even though his eyes still shake a bit (they shake much less than before surgery) his head turn is gone. He is now 5, and he does EVERYTHING a 5 year old does. i hated the comments when he was young too! ...
@bpdhell YES - my son has nystagmus and had a definate head turn. they find a spot where their eyes shake the least. my son's head turn became more pronounced over time and he had surgery to tighten the eye muscles and straighten his head. the surgery was a sucess and even though his eyes still shake a bit (they shake much less than before surgery) his head turn is gone. He is now 5, and he does EVERYTHING a 5 year old does. i hated the comments when he was young too! ...
I would not worry about your son. I have Nystagmus also. (I actally am legally blind. I have a condistion called ocular albinism) I have no had any troubles with the Nystagmus itself, just with the poor vision that comes along with it, but I make it around fine and lead a very normal life as a high schooler. I, however, won't be able to drive when I turn 16 in 4 months:( Very cute baby!!
i have the same nystagmus problem your son gots, ive always wanted to meet somebody with the problem. some ppl say they dont notice it at all. i use contacts and im ok, only when i get really stressed i get irritated and it will wake up nystagmus quick. i feel embarassed when ppl notice it or will comment somethng about it, ppl thnk ur being funny or crazy, so i try to put shades on it helps alot, its a good way to hide it.
I have a really weird thing, possibly nystagmus, where about 2 times a day, my eyes shake back and forth several times a second. The episodes only last about a second... its weird.
did you ever find out anything about that Iamhipo1, because that happens to me, but not as often, its only once in a while. and I'm wondering if its related to this condition, but when it does happen, I can't control it, it just happens, like a snap, and very fast.
Thanks for posting this video of your son. My son has been diagnosed with nystagmus although it looks different to Gabriel's. I've been having a look around trying to find examples of other children with it to compare.
There's no doubt Gabriel will have his share of problems and obstacles growing up and fitting in due to Nystagmus but he has two beautiful and wonderfully loving parents he will always be able to count on and draw strength from. With support like that at home, He'll be a success at everything he sets his mind to. That's evident from the videos.
Thank you both to Gabriel's parents. You will have a lifetime of love and blessings. Keep up with the songs for your son.
I find it hard when I'm teaching because the noisier the kids get, the more stressed I get, and the more they notice it! Mind you, I'm a musician too... it's not so bad... you compensate x
@dbdjet special treatment which he might not even need yet dumb ass so called "specialists" say he does, bullying, dickheads calling him a druggy, not being good at sports. i have nistagmus 2 :/
I would have to agree never tell them they cant do somthing let them try and they will figur it out. My parents were told that I was blind when I was born up to about 2 months slowly my vision got better. My life is pretty normal but I can only drive from dawn till dusk (atleast thats what dmv says) but I have noticed it is getting worse now that im getting older but maybe thats just age and stress
sonjajessen 1 month ago
I want all the parents out there who have watched this video because their child has nystagmus or another visual condition that everything is going to be okay. Nystagmus tends to get better as you get older. You become better at focusing and may even be able to stop the movement altogether when focusing on an object.
LAshlieH 2 months ago
@LAshlieH
Your kids will be fine. If you treat them normally they will be normal. Never tell them that they can't do something bc of their vision and they will never think that way. They should be the ones to decide what they can see. I have ocular albinism and nystagmus. My vision is 20/170. I live on my own. I am currently in grad school. I use telescopes and magnifiers for school work and virtually all reading. I can drive. My parents were told that I was blind at 3 months old.
LAshlieH 2 months ago
thats so true!My daughter is 28,and it has gotten better!
imamcallen 1 month ago
My son was diagnosed at the age of 4 months after having many surgeries. He is now 5 and had 2 surgeries on his eyes. Nagstagmus does not go away. But it has became our normal. Many people ask and we will explain. We were told he got it from lack of oxygen during previous surgeries! I have already taught my son Never say Never! He is 5 and has survived 14 surgeries. This precious baby will be just fine!
jlynne028 4 months ago
@zidane583 well i have nystagmus and i have visual imparment so... yes it can :P
anthtom11 7 months ago
I am a mom of a almost 10 year old boy with CN who has yet to be operated to fix the eye muscles. My comment is related to school, I gave the school office and his teachers information on CN so they could be aware of it's implication (reading medium/small print from far is impossible for him). I taught him not to tolerate any bullying and he hasn't, and to always know who he is and not to not let others define him and so far, so good! best of luck to you :)
TheFiestychild 7 months ago
My son was diagnosed with nystagmus at 2 mo. and when you read about it, it makes you sad. HOWEVER, my son is six now and is doing VERY well. He can't see his eyes move when he looks in the mirror. He also has a astygmatism (sp?) and wears glasses. He compensates well because school and reading and learning are VERY EASY for him.
karmilovich 1 year ago
@karmilovich your son sounds exactly like mine!! diagnosed around 3 months. He is six now and wears glasses for astygmasism and does very well in school. He did have surgery to correct his head tilt (though still there slightly). He plays ice hockey and street hockey. My only fear is that kids in school will start asking questions - i hope they will not make fun of him.
tmmac1011 11 months ago
@tmmac1011 They will make fun of him, he has to get used to it :D Had the same experience
cippo007 8 months ago
All the best to little Gabriel, he is so cute! I have nystagmus (Congenital Idiopathic type, it runs strongly in my mother's family) and have done well with it, adjusting to my condition throughout my life. There are things I cannot do well due to my condition, but my life is happy and fulfilled otherwise. Best of luck to Gabriel and his parents. Regards.
DaisyLee1963 1 year ago
I don't know, but maybe it could be a spasmus nutans, this occur sometimes on babies, but it dissapear in the next two years. I hope, the child got this type of nsytagmus, it's the "easiest" form, that dissapear later.
Neurotoxins in many food products, vaccines and exposition with neurotoxins (many deodorants for exmaple,...) can attack the neurones and damage them. This can release such neurologic illnesses, most of the people don't know that, how sad.
Sorry, my english is not so good.
XSirApocalypseX 1 year ago
He has been followed closely by his eye doctor since 3 months. when i heard his diagnosis it broke my heart. He had surgery last January to all 4 eye muscles to correct his head tilt. it was so hard when he was little to be asked all the time what was wrong with his eyes & why he tilts his head. after his surgery the head tilt is nearly gone and with his glasses he has nearly perfect vision. the shake i am told will never go away but he is doing very well - everything a 5 yr old should.
tmmac1011 2 years ago
Thank you! I wish the best to you and your family. We are looking into this type of surgery when he gets a little older.
dbdjet 2 years ago
Looking at this video reminds me of my son - now 5. around 3 months I really noticed that he couldn't stay focused on my face. His eyes would shake (a bit faster than this video). When I took him to his routine appointment - the NP looked at me and said "do you think he can see you?" I nearly fell to the floor when she asked me that. She called in another doctor who confirmed he "could see" but was not sure how much he could see. We were refered to a Pediatric optimologist who IS WONDERFUL
tmmac1011 2 years ago
@tmmac1011 My son is having the same thing and we just noticed it at 3 months. Does your baby still have it. Did it go away eventually?
Metalheaddox 1 year ago
@Metalheaddox Yes, he still has it but surgery was done to lessen his head turn which was pretty dramatic. His head turn is nearly gone and the nystagmus has lessened a little but is still noticeable. There is nothing he can't do. He does wear glasses everyday all day. He has a Stigmatism and the glasses help a lot. Despite his nystagmus, he tests near perfect vision with his glasses on. It is remarkable how kids adapt...
tmmac1011 1 year ago
Your baby is adorable! My son also has this, it too was discovered as an infant. He is now 11 and is FINALLY scheduled to have the surgery 10/15. I put it off so long due to other health issues. His doctor is optimistic for vision improvement. (Dr. Robert Burnstine, at Akron Children's Hospital in Ohio). My son also wore glasses for a few years, but the doctor told me a while back to let him stop wearing them, as they actually do little to help, due to the nystagmus. God Bless!
mommakat627 2 years ago 2
Gosh, what a beautiful little boy
suede417 2 years ago
Hi there. Can you please advise if Gabriel does have Nystagmus? I notice Gabriel is now wearing glasses. Our six month old eyes began to show nystagmus at 3 months and were hoping its transient infantile nystagmus as all other checks with his eyes are ok. Any information you can provide is much appreciated.
Regards from WK&J Perth Western Australia
ganga132 2 years ago
Gabriel was diagnosed with nystagmus at 7 months. While at the doctor's office the pediatric ophthalmologist noticed that the curvature of his eyes was quite far-sighted for his age. He was given glasses and he has worn them for the past year. His vision greatly improved and the nystagmus abated considerably. Just one month ago we were told by the same doctor that Gabriel would not have to wear glasses. At present, his nystagmus is minimal.
dbdjet 2 years ago
Thank you so much. We saw an eye specialist at 3 months and was told to go away and come back in 6 months time which left us feeling very angry and empty. We're seeing the leading eye specialsit in Perth next week (7.5 months) an we hope he will have good news for us. We hope our boy John will be as blessed as Gabriel. Thanks, W&K.
ganga132 2 years ago
To me that looks more like saccadic intrusions, not nystagmus. They are square wave jerks with a fast phase that takes the eyes off and back to primary fixation. Nystagmus, on the other hand has an initial slow phase with quick snap back.
scrstr10 2 years ago
That's how my son's eyes are. He is one and he has nystagmus. I see it especially when he's sleepy. I get extremely sad when I see his eyes moving b/c I know he can't control it. He plays and is extremely active. He makes me feel better b/c he doesn't sweat it. I can't stand the idea of him bein picked on though b/c of it. That's too much for me to bear. I'm REALLY considering surgery.
LolaJay1 3 years ago
@LolaJay1 I have same feelings about my son. He is 7 months now, we were told to come back to the doctor in 3 months. The doctor said his vision is fine, but the movement is what bothers me. And I'm considering the surgery too. I can't bare that he is not just like the other kids. And people keep asking me what's wrong with his eyes. It hurts.
fkitova 2 years ago
Yeah I feel you on that. Especially how they ask. I've had very insensitive people ask me that question. I used to skyrocket from 0 to 60 in a split second. But I notice that it is actually getting better the older he gets. His eyes don't move as much as they did. I have come to accept it. So I feel MUCH better.
LolaJay1 2 years ago
my son has the same kind of nystagmus. do you find that your son turns his head to one side to focus on something? I'm not sure whether my son does it because of the nystagmus or not.
bpdhell 3 years ago
@bpdhell YES - my son has nystagmus and had a definate head turn. they find a spot where their eyes shake the least. my son's head turn became more pronounced over time and he had surgery to tighten the eye muscles and straighten his head. the surgery was a sucess and even though his eyes still shake a bit (they shake much less than before surgery) his head turn is gone. He is now 5, and he does EVERYTHING a 5 year old does. i hated the comments when he was young too!
tmmac1011 1 year ago
This has been flagged as spam show
@bpdhell @bpdhell YES - my son has nystagmus and had a definate head turn. they find a spot where their eyes shake the least. my son's head turn became more pronounced over time and he had surgery to tighten the eye muscles and straighten his head. the surgery was a sucess and even though his eyes still shake a bit (they shake much less than before surgery) his head turn is gone. He is now 5, and he does EVERYTHING a 5 year old does. i hated the comments when he was young too! ...
tmmac1011 1 year ago
@bpdhell YES - my son has nystagmus and had a definate head turn. they find a spot where their eyes shake the least. my son's head turn became more pronounced over time and he had surgery to tighten the eye muscles and straighten his head. the surgery was a sucess and even though his eyes still shake a bit (they shake much less than before surgery) his head turn is gone. He is now 5, and he does EVERYTHING a 5 year old does. i hated the comments when he was young too! ...
tmmac1011 1 year ago
I don't know if your eye doctor has told you but there is a surgery to slow down the movement, which in return will improve vision.
fastrunner1000 3 years ago
I would not worry about your son. I have Nystagmus also. (I actally am legally blind. I have a condistion called ocular albinism) I have no had any troubles with the Nystagmus itself, just with the poor vision that comes along with it, but I make it around fine and lead a very normal life as a high schooler. I, however, won't be able to drive when I turn 16 in 4 months:( Very cute baby!!
KCfan7989 3 years ago
i have the same nystagmus problem your son gots, ive always wanted to meet somebody with the problem. some ppl say they dont notice it at all. i use contacts and im ok, only when i get really stressed i get irritated and it will wake up nystagmus quick. i feel embarassed when ppl notice it or will comment somethng about it, ppl thnk ur being funny or crazy, so i try to put shades on it helps alot, its a good way to hide it.
arcoiris07 3 years ago
I have a really weird thing, possibly nystagmus, where about 2 times a day, my eyes shake back and forth several times a second. The episodes only last about a second... its weird.
iamahipo1 3 years ago
did you ever find out anything about that Iamhipo1, because that happens to me, but not as often, its only once in a while. and I'm wondering if its related to this condition, but when it does happen, I can't control it, it just happens, like a snap, and very fast.
AudioInklined 3 years ago
that's the way it started on me.... now i have it 24/7 .. i really hate my life
mrmonter 2 years ago
how do you cope?
you truly have it continuously?
how do you focus on anything? what can you do to treat the condition?
AudioInklined 2 years ago
Thanks for posting this video of your son. My son has been diagnosed with nystagmus although it looks different to Gabriel's. I've been having a look around trying to find examples of other children with it to compare.
(Oh, and nice singing voice - :D.)
sesaworuban 4 years ago
There's no doubt Gabriel will have his share of problems and obstacles growing up and fitting in due to Nystagmus but he has two beautiful and wonderfully loving parents he will always be able to count on and draw strength from. With support like that at home, He'll be a success at everything he sets his mind to. That's evident from the videos.
Thank you both to Gabriel's parents. You will have a lifetime of love and blessings. Keep up with the songs for your son.
mebcalif 4 years ago
i have cn and i'll be praying that gabriel doesn't have cn and if he does God will bless him. you are in my prayers.
kguapita777 4 years ago
I find it hard when I'm teaching because the noisier the kids get, the more stressed I get, and the more they notice it! Mind you, I'm a musician too... it's not so bad... you compensate x
violoboist 4 years ago
That is one cute child. I have Nystagmus too and i feel sorry for that kid knowing what hes in for :(. I hope he deals with the torture well :(.
cavemeister 4 years ago
Like what?
dbdjet 4 years ago
being called a druggie, getting beat up cause people think s/he is looking at them funny etc :(
cavemeister 4 years ago
like difficulty with general vision, reading, sports, driving, using the computer, etc...
kguapita777 4 years ago
@dbdjet special treatment which he might not even need yet dumb ass so called "specialists" say he does, bullying, dickheads calling him a druggy, not being good at sports. i have nistagmus 2 :/
anthtom11 7 months ago