NOAH AOC

I have recently noticed that Jathan has a constant sweeping motion with his eyes from one side to the other (very frightening for a parent to see).  I am assuming that this is the beginning of his Nystagmus.  Is this correct?  Also, for those of you that have experienced your children doing this, at what age did they begin to find their null point and how did you figure this out?  My son is two months old as of today.

Thanks in advance to anybody that can help me. 

Hi Vicki

my name is sarah my middle son dylan was the very same and even to this day its no better we took to see a specialist and he told us thast he would need glasses since he started wearing glasses you wouldnt notice it as much at first yes it did freak us out his whole eye would just dissapear all we could see was the white of his eye specially as he was just about to fall asleep my heart used to thump but since he started wearing glasses it bearly noticeable except at night when hes going to sleep our son was two months old when we first noticed it but he is grand with it he is now almost 9 and he thinks its great he can do funny things with his eyes and he is so popular at school he thinks its cool.

sarah

Hey Vickie!  I hope you are doing well.  Yes, this is nystagmus.  Zach's started at about 6-7 weeks old.  Until then his eyes were completely still unless he voluntarily moved them.  Then, all of a sudden, the involuntary movement (nystagmus) started.  Nystagmus varies, but Zach's was the long sweeping side to side motion for a long time until he started using his vision more to focus on things.  As he learned to focus, the nystagmus changed.  When he focuses now, the nystagmus is more jerky.  No more long sweeping motion.  He started finding his null point between ages 1 and 2 from what I remember.  I'd have to pull out his records to see when the PO started noticing it.  As he gets older, he will find the null point that works for him and you'll see that when he really wants to see something, he'll turn his head in that position, which for Zach is a slight right tilt head down position.  Some null points are very obvoius and some are more centered to the front like Zach's.  Don't worry, this is completely normal for albinism and Jathan will find his null point as he gets older.  If it is an extreme null point, surgery can be done to move it more to center.

Hi...

My Andy was about 3 months old when his nystagmus started. He has a lil bit of counterclockwise and back and forth. It is kinda wild looking. I am curious to see all the different versions of nystagmus at the conference. Andy has not found his null point yet and is also not really using his right eye. I guess when he is older we will figure that out.....

Vickie,

Ryker's nystagmus started when he was about 6 weeks.  I remember when I had him in to get his pictures taken we almost had to time the picture when his eyes would be looking at the camera, they just went back and forth all the time.  His OT actually found his null point when he was about 3-4 mos. old by slowly moving a toy in front of his face and when his eyes stopped and actually looked at the toy, she knew that was his best vision or null point.  Jathan might be a little young to do that yet but you could try it.  Ryker actually didn't figure out how to hold his head to find his null point for himself  until he was about 14-16 mos.  He has a chin down and tilts to the right just a little bit.  He only uses it when he's really concentrating or seeing something for the first time. 

I, too, will be interested in seeing all the little ones at the conference and watching how they use their vision.  I have a feeling I'll want to just hang out at the childcare and watch and learn from all your little ones!

Kelli

Thank you everybody for you help with this.  I was so scared when I started seeing it.  I knew that it was going to happen but I guess you just can't be totally prepared to see something like that.  And I wasn't totally sure if it was Nystagmus or not.

Thanks Again,

Vickie

Kelli,

Thanks for the suggestions.  I am going to talk to my service coordinator and see if she can get me some assistance from OT and maybe I can have the same fortune as you and find his null point to help his out. 

Thanks,

Vickie

Same info as everyone else really. My 22month old Dean started quick short nystagmus at 4 weeks, he improved about 9 months with a little developmental improvement at 4 months - he used to look slightly down at ppl.  since he wasnt diagnosed as OA until 9 months, I understand how freaked out you could have been seeing it for the first time. He has a big central null point now which is lucky,  it goes crazy when tired or hungry though. Drew my new 4month old has a long slow sweeping nystagmus, that has been quite bad since 2weeks.  He can only stop his eyes for about a second somewhere just above central vision. I have been doing some exercises by holding things in his null point and trying to lengthen his focus time but ho knows if that is helping it just yet.

Yes the same here.  Lexie started at about 4-5 weeks and it was the long sweeping motion like REM with her eyes open.  When she started crawling she would tilt funny to look at us. 

There is an eye surgery that my son had at 8 months of age ( he is 13 now ). It resembles the eye surgery for cross eyes and such. It helped slow his nystagmas and helped create his null point for him. Ask your eye doc and see what they think about it. Let me know if there are any questions you may have.

Nikki

Here is my personal email if you like as well,

nikkib0414@yahoo.com

Elliott began constant nystagmus at 6 weeks. He didn't start tilting his head to find his null point until closer to a year... I think at 9 months, when he actually began to focus on things. He wouldn't look at anything until 6 months, not even my face. There's never anything wrong with seeing your doctor for peace of mind though. Don't feel bad if that's what you choose to do.

Nikki, 

By eye surgery are you talking about something like Dr. Hertle's Tenotomy procedure?

Roxanne,

How old was Lexie when she started to develop her Null point?  Jathan's TVI was out on Tuesday and we both noticed that Jathan is turning  his head to the right a lot.  I was wondering if it might be possible that he is all ready forming his null poing?

Vickie

Hi, My son Zackary was two weeks old when he first developed nystagmus.  It was a frightening time for us as well.  The doctor's told us many things that were not accurate including the fact that my son would never see more than light and dark.  Zack was blind at birth with the exception of seeing light and dark and he did not develop any vision until he was 9 months old when he first made eye contact.  Today Zack is 15 years old he is an amazing kid with more friends than I can keep up with.  Today his acuity is 20/70 with best correction and Dr. Hertle told him that he would sign his paperwork to get his drivers license next year when he is 16 if Zack feels he is ready to drive.

I spent a great deal of time worrying about all the things that we parents worry about and so far it has been a waste of time.  My advice to you as a new parent is to do activities to improve your son's vision because vision is learned.  Allow him to be a normal child.  IE Allow him to do age appropriate activities and above all treat him like  you would  any other child except for sunscreen, hats and glasses.  These are three very important items in his life. 

My son has had surgery on his eyes 3 times.  Once at 14 months he had strabismus surgery at 4 he had it again and at 12 he had tenotomy they nstagmus dampening surgery and at the same time he had his null point repositioned and strabismus again.  If I had it to do all aver again I would not change a thing.  Zack's vision is better than we ever believed it could be. 

Keep you chin up and enjoy your little boy.  Sheri

Sheri,

How old were your children when they developed a noticable null point?  My TVI and I noticed on Tuesday that Jathan was turning his head to the right a lot,