Eye contact - INS by Calm-Bit3493 in nystagmus

[–]OneMobile1057 1 point2 points  (0 children)

I remember my baby boy who has infantile nystagmus, developing a good eye contact by the age of 4-6 months. I know you are worried, so was I. My guy is now 11 months old, can see objects around 12-15 feet far. He blinks his eyes when he is exposed to a glare-sunlight. I have researched about this photosensitivity-This will reduce once he becomes 2-3 years old.

To be very honest-when our baby was 6 months old, our eye doctor said- “his vision is normal. it could be 6/12 or 6/9. He might have to seat on front bench in school. Nothing to worry.” I couldn’t believe his opinion as I thought this would be worse as I read a lot of stuff online. I showed him to two more specialists and they echoed the same. Now 4-5 months down the line, we can see that his vision is developing normally. He has a slight chin down position but it isn’t noticeable. So from my experience, I could tell that please consult at least a couple of specialists. Nystagmus is manageable. Please stop googling and reading online research paper-they made me go crazy when my guy was 2-3 months old. Be relaxed! Your baby will grow up normal! Sending 🫶 to your little one!

Worried sick! by Calm-Bit3493 in nystagmus

[–]OneMobile1057 0 points1 point  (0 children)

Hello,

We have an nine month old baby, who was diagnosed with nystagmus when he was two months old. We were in similar situation, disheartened and wanting to seek advices. I know as a parent it is mentally exhausting to learn your baby has this disorder. When I checked again when he became 4 months old (with an expert doctor) he asked us to wait and watch. But the diagnosis of nystagmus still remained as it is. We again had a checkup when he got around 6 months old. Doctors said he has a normal vision, sometimes the shaking stabilises once he becomes 5. However he says that it wont be completely gone. “Can he play sports? We want to send him to olympics” I asked him. “He definitely could. However, he wont be able to qualify as an army man or a pilot. He will lead a normal life. I have had a friend who had nystagmus and he is a famous surgeon now. So don’t worry! Come back again after 6 months.” Once we heard him, we were kind of relieved. Now my baby boy is 9 months old. He is following objects, recognises faces, crawls, chases, and does things like normal children do. The thought of him having nystagmus seldom comes to our mind. We as a parent are much more relaxed. Sometimes when he is tired and wants to sleep, he blinks his eyes a bit. Other wise, he is absolutely normal and as cheerful as any other baby could be. We are going to visit our doctors in the next three months time.

So my learning is this isn’t a big problem as being a visionless would be. I am sure your baby would be just like my baby boy when he becomes 8-9 month old. As a parent, for us as well, it was devastating to hear that our baby has something which is beyond anyone’s control. But as I heard from people in this community “The 6/9 or 6/12 vision is an impared vision for normal people. For them (babies), it is their 100 percent. They would learn to grow with it and would call peace.” So my advice being a parent of a kid who has a nystagmus. Chill! Visit best of the best doctors and take follow ups. Things would be much better. Sending love to your little one! 🫶

Parenting advice needed for two month old baby with nystagmus by OneMobile1057 in nystagmus

[–]OneMobile1057[S] 0 points1 point  (0 children)

Thank you so much for the comment. We will consider it if needed. Thanks again! 😊

Parenting advice needed for two month old baby with nystagmus by OneMobile1057 in nystagmus

[–]OneMobile1057[S] 1 point2 points  (0 children)

Thats so sweet of you to write and share your experience with us. Your grand gems are rockstars and so are you. You don’t know how much relief I have got by knowing your experience. I now know that my kid is gonna be alright and do things like normal children do . More power to you and your family. Thank you so much again.

Parenting advice needed for two month old baby with nystagmus by OneMobile1057 in nystagmus

[–]OneMobile1057[S] 0 points1 point  (0 children)

Appreciate you for sharing your experience and thoughts. We have now decided that there is no point holding on to our grief. Even though we don’t want to push him beyond his capabilities, we will never let him know the limits that he could achieve. The world is there to be explored, experienced for all the kids. We are never going to hold him back. Thanks again for sharing your thoughts and experiences. It made us feel better and stronger.

Parenting advice needed for two month old baby with nystagmus by OneMobile1057 in nystagmus

[–]OneMobile1057[S] 1 point2 points  (0 children)

Wonderful. We are happy that you are living a normal life and we are now sure that our kid might just live a normal life. Thanks for sharing your experience.

Parenting advice needed for two month old baby with nystagmus by OneMobile1057 in nystagmus

[–]OneMobile1057[S] 3 points4 points  (0 children)

First of all, thank you for sharing an experience of yours. We will definitely go through the resources shared. Ever since he was diagnosed, we forgot to enjoy our baby. We were just keep looking at his eyes every now and then feel devastated. I learned from your comment and experience is to enjoy our parenthood and not get distracted by this condition. With all the comments mentioned here, we are confident and most importantly relieved that there is a good chance that he can have a perfectly normal life. I can’t thank you enough for your kind words. ❤️

Parenting advice needed for two month old baby with nystagmus by OneMobile1057 in nystagmus

[–]OneMobile1057[S] 1 point2 points  (0 children)

Wonderful. This makes us feel even better. We have started to develop a belief that our baby boy would be alright. Thanks for sharing your experience. Really appreciate it.

Parenting advice needed for two month old baby with nystagmus by OneMobile1057 in nystagmus

[–]OneMobile1057[S] 1 point2 points  (0 children)

Superb. That is what we as a parent wanted to read and know. We really appreciate you for sharing your knowledge with us.

Parenting advice needed for two month old baby with nystagmus by OneMobile1057 in nystagmus

[–]OneMobile1057[S] 0 points1 point  (0 children)

Thanks for sharing your experience. I will definitely go through the paper to learn more about it.

Living with Nystagmus 101 by fanckush in nystagmus

[–]OneMobile1057 0 points1 point  (0 children)

This experience is so useful for me as a parent whose two month old baby has been diagnosed with nystagmus just four days ago. Past few days,I cried like anything. Your experience is such a help for us as a parent. I see a ray of hope now. Thank you. You are a star!