Friday, October 2, 2009


Joey has a Nystagmus. We noticed it a few months ago and got a referral to a pediatric opthamologist (apparently the only one in Sacramento) in August. Our appointment was not supposed to be until November 2, but they called us yesterday when they had a cancellation so I took him to see her yesterday.

She told us that a congential Nystagmus usually begins between 3-4 months of age. Joey's, however, began later. Since Joey's onset is not textbook she wants to do an MRI (which has to be done under general anesthesia) to rule out any other potential causes such as a brain tumor. I am very scared and upset over having to go back to the hospital.

The MRI is scheduled for October 22. While Joey is under anesthesia, the doctor is also going to insert a probe into his clogged tearducts. Hopefully this will clear up the chronic eye infections that he gets every couple weeks.

The doctor assures me that a brain tumor is really rare, especially where, as with Joey, there are no other signs of intracranial pressure. I am still really scared though and am not ready to see my baby in a hospital bed, with an IV again and having to be put under anesthesia. I just hope they don't have to intubate him too. Please pray for him.


  1. Oh Cori, that is a bummer. On the bright side nystagmus doesn't get worse and often improves. Summer started hers at about 2 1/2 months old. She was still in the ICU and the hospital eye doc actually told me she was blind. I cried so much. Later, we found out that she can see very well but does have some course nystagmus. It has gotten better over time.

    They may put him on a breathing tube for the MRI but that will be out within a few hours afterward. Your little champ is going to ace this!

  2. Hugs Cori! He's going to do awesome and it will be good to have more information. Does it have any effect on his vision? So glad you were able to get him in sooner.

  3. oh Cori. I can feel your fear and sadness about this. I too would feel the exact same way. I will be thinking and praying for you three. I wish I lived closer so I could come over and talk with you and be there when Joey goes through this procedure. Just know all WILL be ok. I am certain of it.

  4. I did a ton of research when Joaquin showed signs of having a strabismus. I went back to some of the sites I searched and I found this.
    It could explain the recent head nodding/bobbing that Joey does sometimes. Also, his nystagmus isn't constant when he is with me. It is still when he has his bottle and other random times. Let's chat.
    Here's the link:

  5. Goldie has nystagmus and I've done a lot of reading about it. Goldie's is caused by a smaller than normal optic nerve or (optic nerve hypoplasia) Have they been able to get a good look at his optic nerve? This can be hard when they are awake, maybe they could do this while he is under. is a good place to start and there is also a nystagmus email list that is very helpful in finding a knowledgable dr. I didn't want to read anything at first because it was all very depressing. But, I can tell you now it hasn't been as bad as I expected! Good luck with the MRI. I hope everything goes well.

  6. Oh, Cori! I'm thinking of you and Joey.