Congenital Nystagmus and Ocular Albinism

[hollie]

My son was diagnosed with both congenital nystagmus and ocular albinism, they are both eye conditions and wondered if anybody else suffered with either or has children with it. Would be interested in learning from other peoples experiences.

 

[Emmea12uk]

I have never heard of them. what are they?

 

[cora437715]

I was born with both of the conditions that your son has been diagnosed with. I am now 27 and don't feel that it has stopped me doing the things I've wanted to do. I was given extra support at school and college, but the only downside is that I am not allowed to drive as my long distance vision is too poor.
If you've got any questions about the condition I'll be more than happy to answer them.

 

[MrsB80]

Hi Hollie,
My husband and 2 youngest daughters all have Congenital Nystagmus and on my husbands side his newphew, niece, cousin and uncle all have CN & ocular albinism if you need any advice or want to ask any questions just ask away
Jo x

 

[jennymay]

My son is 7 months now and also has both CN and OA. I knew before I had him that he would be born with this. It runs in my family, all male have both and all females carry and pass on both. However don't worry about either problem to much as I have grown up around them. Most of the males in my family have very little problems with their vision, even if it isn't great, because they learn to deal with it. My cousin is a paramedic, my uncle a mechanic, and my dad did construction until he hurt his back. Also it get better in the first few years. It is scary at first because most babies born with it don't even focus until 4 months or so. My baby’s doctor sent us to a spiciest at four months to make sure my son wasn't just completely blind. But in the last few months he has taken giant steps and can focus and follow objects. Hope all this makes you feel better or let you know you are not alone.

 

[Caezzybe]

My husband has nystagmus (it doesn't affect his ability to do anything). Our son appears to have inherited it from him (along with quite bad long-sightedness from both of us, he is +5.00 in one eye and +6.00 in the other). Logan had electrophysiology (electrodes on his head while looking at patterns on a screen to measure brain activity) at Great Ormond Street this week and they reckon his visual responses in his brain are fine, his eye health is OK and that the only issue affecting his vision is his long-sightedness for which he will have to wear glasses to prevent a squint.

Logan was referred to GOSH as he also has Down's Syndrome and they wanted to check up on his sight in general and his nystagmus in particular.

If you have worries about your son's eye conditions, I would ask for a referral for further investigation.

 

[summer rain]

My SILs little boy has just been diagnosed with congenital nystagmus, his is very severe his eyes are in a continuous rolling motion from one corner to the other, they are not sure yet if its part of another condition or how his vision is; when they tried to look into the back of his eyes his pupils were too tiny (he is 5 months)

 

[jogami]

This is a VERY old thread (the search led me here), but my one twin has just been diagnosed with this. Her eyes roll downward, she has jittery eyes, they bounce around and jump, she is 2 months old in a few days time. She couldn't focus as well as her sister and the jumping made me book with a opthamologist straight away. Good news is she doesn't have hydrocephaly (i was worried due to her sunsetting eyes!) he said she is still small and we have to go for a follow up, but he did not find any spots, lesions or swollen nerves and said she has Ocular Albinism and a bit scew eyes. He said Delayed Visual Maturation is a broad term and they only use that as a indefinite diagnosis and a last resort. He said he would like to see her in 6 weeks for a checkup as she is still so little, but he did not seem unduly perturbed.

Her eyes till worry me as I'm still with her all the time I see her "episodes" of eye rolling! The specialist did say he cannot recommend a MRI as he is not her paed or main "caregiver", but in this case he does not constitute it as necessary.

It's hard not to compare her to her twin who is so alert and looking all over and smiling etc. This thread has given me hope!

I'll deal with glasses over blindness any day! She's still my baby and we'll love her no matter what but I think of her future.

 

[BlueHadeda]

Hi Jogami!! I have absolutely no knowledge on those conditions, but just wanted to say hello from a fellow South African!! I'm sorry about your one daughter's eyes, but you sound positive, which is great. When it gets tough with my daughter, I also remind myself that she could've been in a wheelchair (she has the baby brother of Spina Bifida). Btw, I love all 3 your children's names! Just beautiful!

 

[jogami]

Hi Blue thanks for the lovely words!

Well I'm so devastated. I took Mia for a second opinion and the paed I took her to also thinks something is wrong. She's not sure Mia can see. She said that she has a few concerns. She's very stiff, she's not smiling and her eyes are not right. She's booked an emergency EEG and ERG to rule out epilepsy and then to check if she can see and then a MRI to rule out Cerebral Palsy. What can I say except I'm heartbroken

Mia's EEG and ERG are booked for Tuesday 11am.

 

[BlueHadeda]

Oh no, that's so sad and worrying!! It's great that you took her for a second opinion. Let's just hope everything comes back normal. Keep us posted? I bet you're not sleeping much tonight.

I know it's not nearly the same thing, but my son has epilepsy, and it turned out okay for him. I'll pray for your babygirl.

 

[Krissys]

I'm a nanny and for the past 3 years I have cared for a little girl w cn she's almost 5 she did have corrective surgery fell free t

 

[Krissys]

To pm w any q incase I forget to ck here