Yesterday we went to the Pediatric Ophthalmologist about Braden's Nystagmus. He confirmed that he does, indeed, have Nystagmus. He said a lot of other things, so hopefully I get it all straight. Braden doesn't seem to have as good of visual acuity as other babies his age. He didn't follow lights and objects as well as the doctor thinks he should. At home, he seems to follow things pretty well, though, so we hope that it was just because he only looked at him for a few minutes. The doctor thinks he may have delayed visual maturity and that maybe the connection between the eyes and the brain hasn't totally "turned on" yet.
He also said that his retinas look normal except for the outer rim, which has less pigmentation. This can be normal in fair skinned babies, which Braden is, but can also denote a problem. Since he does have less pigmentation, the doctor wants Braden to get a test called the Electro-retinal Gram (ERG). This will measure the electric movements in the retinas and tell us if there are the right number of cones and rods in his retinas. If there are too few cones and rods, that could be the reason why he has Nystagmus. If the number of cones and rods are normal, then he could have Idiopathic Nystagmus, which basically means the reason for it is unknown.
Sometimes an MRI is done to help determine the cause of Nystagmus, since it can be a neurological problem that causes it, but since Braden is developing normally other than his Nystagmus, the doctor doesn't think that an MRI is necessary at this point. The doctor also told us that Braden has some nearsightedness. He said it isn't a problem right now, though, since babies are only interested in what is going on right in front of them anyway. He will follow up with that at his next appointment to see if he needs eyeglasses.
I am relieved that the doctor doesn't seem to think it is a neurological problem. At the same time, I am overwhelmed with the ambiguity of this problem. I really would like to know what to expect in the future, but Nystagmus is different for every person and it always changes, so it is hard to know what to expect.
But, when I look at Braden, and he looks into my eyes and smiles and coos, none of this really even matters because he is my baby boy and the amount of love I have for him is inexpressible.
6 years ago
2 comments:
Wow that is crazy. It is amazing what weird diseases (is that the right word?) our family has gone through. He is adorable, and if he has to wear glasses it will be the cutest thing ever!! Can't wait to see you in November! Tell Braden that Auntie Noel loves him.
I didn't know you blogged. Cool. And I didn't know you guys were dealing with this. We'll pray that all's well. And don't pay for the grocery game. There's a free site that does the same thing called the coupon mom. Check it out, it's great!!
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