Logan went to see a children's ophthalmologist last week in Columbus......Dr. Dave Rogers was excellent!!!! He told us that Logan has ambylopia (lazy eye) that is affecting the right eye....Jason and I have noticed this since birth...It can be corrected with patching the good eye 2 hours a day and maybe surgery further on down the road. He also said Logan has nystagmus (dancing eyes) and he his very farsighted... We were fitted for glasses and he will start wearing them all the time...
The unsettling news we received is that having ambylopia, nystagmus and being farsighted is sometimes indicative of albinism...This came as a complete shock to us...when I think of albinism I think of very white skin and red eyes...the doctor informed us that there are several types of albinism....so, we are going to have an MRI this Wednesday up at Children's in Columbus and Logan will be put to sleep for this..They are wanting to look at his brain structure and look at his optic nerve and then we will go from there......
It was a pretty rough week and alot of info to take in all at once....The patching is going very well, I am patching his eye in the evening and we are playing and just having a normal routine.....I know he has some sight to that eye because at supper time is mouth is open before the spoon gets there....
On a positive note, Logan turned 6 months old this week.....it is going by way too fast....
4 comments:
Hi my name is Kara and I found your blog on my google feed Albinism. My daughter was diagnosed with Albinism December of 07. She is now 13 months and doing great. Sounds like you are going through the same thing I am. Her pediatric ophthalmologist didn't know what was going on either and made her have an MRI that was not necessary. If they have albinism he should be able to look in his eye and tell right away. I've learned through other parents that their kids were diagnosed right away as a newborn. Anyway, if you have any questions I would love to answer them. My email is karadoss@gmail.com....Kara
Hello there,
I also found your blog as it showed up on my google alerts for albinism. Kara is right - did your eye doc say anything about seeing any transillumination (sp?) in the eye? If he has albinism, there should be a lack of pigment in the eye that allows light to sort of "show through." You might want to check out NOAH for more info...they're great and have lots of info for parents in the same spot as you. You can find them at www.albinism.org. I'd also be happy to share anything I know. I'm an adult with albinism, although the type I have is very rare.
Hi,
Add me to the list of people who found you via my Google Alert for Albinism.
I am an adult with albinism and I have 2 kids with the condition.
NOAH has a rapid response team that can put you in touch with someone via phone or email within 24 hours.
The MRI sends up a HUGE red flag for me. Albinism is most commonly diagnosed by looked at the pigmentation of the Retina in the back of the eye. I'm not trying to slight your doctor but albinism is fairly rare so many doctors only know what they read in Med school. You might want to consider a second opinion before going in for the MRI.
Please feel free to contact me or visit NOAH's web site. www.albinism.org
Good luck,
Lee
Hello,
I also found your site through a Google Alert.
I have a 2 year daughter who has albinism. You can see her www.parentofachildwithalbinism.com
I agree, definitely check out the NOAH website: www.albinism.org
When my daughter was born it was very hard to deal with and understand at first and NOAH was a huge source of support. If you ever have questions, and want another parent's perspective, you can email me anytime. :)
Also, the NOAH website has a pretty active parent message board and everyone is always happy to answer questions.
Take care.
Mashawna
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