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Hi everyone! My name is Erika, and I am 22 years old, and the mother of 3, pregnant with my 4th! I have 2 year old twins, Elizabeth and Elijah, my visually impaired sweety Joshua who is 16 months, and I am due 08 08 08 with a baby I am hoping to vba2c with at home with a midwife!!! Ok wasnt that exciting
So about Joshua! At 3 months old I took him to the ER thinking he was dehydrated (he was nursed and wasnt eating very well) and they rushed him away, while I was standing there filling out paperwork, to TRAUMA!! I had no idea why and they led me back and I asked and they said "LOOK AT HIS EYES!" He has nystagmus. At that point I didnt know though, and thought it was normal baby "I dont have good control" movement. They thought I dropped him on his head or something. They sent me to a nuerologist, and a opthamologist, who told me, "Congratulations, your son has inhereted from your father, Ocular Albanism!".
I always new my dads eyes were wiggly, but very very controled compared to Joshuas. If you look at my dad his eyes barly shake. Joshuas go clear across his head back and forth. So I never put two and two together. I brought my dad with me to the eye appointment when Joshua was 3 months old just "in case" it was the same thing, since I now knew his movement wasnt normal. The Dr. had my dad sit down and examined his eyes (my dad was never told what he had was called albanism, and was caused by the lack of pigment in his eyes) and said ok. She then looked at Josh and sure enough, same thing!
So after a year of eye exams and unsuccessful patching (his right eye wanders a bit he he) we got glasses last week at 16 months old They couldnt believe he walks when they saw his prescription. 20/450 is his vision. I get his glasses next week, and pray he keeps um on! He is a very very fussy boy.
He is also anemic which I found out about 8 months ago because of other problems he was having. He gets fevers of unknown origin too. Which this all is just so weird to me because I have twins who were born full term, came right home with me, perfectly healthy now, no glasses, no anemia, ect, and then my singleton was also born full term, but was in the NICU and transferred to another hospital for a MRI, in an oxygen tent, and had a paralyzed vocal cord (which has now corrected itself, I THINK lol!). He is healthy and I KNOW it could be so much worse, but he is a little spoiled cause he is so poked and prodded every month by doctors, and hematologists (blood doctor) and opthamologists.
Anyways, that is about us. and me! Thanks for listening, and I plan to be an active part of this board!
I'm Sammie, welcome to the board. I *Think* there might be or have been someone on here with the same thing before.. but I can't really remember, lol.
My son Nathan was born premature and has ROP (retinopathy of prematurity). He has worn glasses since right before turning 2. We drive to OK City to see a specialist every 6-8 weeks for him. I can't wait to see pictures of your little boy!
Welcome, I am Jennifer, mommy to Alexis who has septo-optic dysplasia. She was diagnosed at 4 months because of the nystagmmus as well. She is also autistic and has modeate MR. She is 5 now and in special ed kindergarten and doing pretty well. She is a peach most days.
Wow, you have a lot on your plate. You are a very strong woman. I know there are other moms here whose kids have ocular albinism, so hopefully they will be a little more help to you, since I odn't have any experience with it. With that said, if you have any questions please feel free to post a new topic or PM me. I will try my best to dig up an answer for you.
Cant wait to see pics of the LOs and hope you enjoy posting here.
<div align="center">Thanks Alison's Mommy, SillyMama, Katarina and samylaine for my blinkies.</div>
Hi! You have your hands full! I am Jenn and have two kids.... Sarah is 3 1/2 and Joel is 8 months. He has amblyopia and we patch 4 hours a day right now. He goes back to the ped. opth. on Feb 27th to see if there is any improvement. Good luck with the glasses!! I have been on a message board that suggests sometimes using arm splints to keep kids from pulling off the glasses... Sounds terrible but I guess sometimes ya gotta do what works. Good luck!