View Full Version : Concerned : (
01-30-2009, 12:01 AM
:pray I noticed about 3 days ago that Zachary's left eye was getting lazy. Every day since then it has been more noticable, especially today and especially when he is tired. He also will fall a sleep with that eye about 1/4 open, and he does that all the time. He has left coronal, so this is the same side as the fused suture. If he had a nuerologist yet I would go ahead and call them, but his first appt is not until the 3rd of February...what do you think I should do. I was already worried that he had vision problems in that eye, and this is just making me worry more, plus I know he has ICP, I do not want him to loose vision competely and since I am not a doctor for all I know waiting until the 3rd could mean the difference between seeing through that eye and not. So do I call the pedi, cause I dont know if she can do anything, or do I call the nuero and say hey this is going on....I mean if he were already a patient then they would bring him...I dont know, any advice would help. I dont want to have to wait until the 3rd, maybe I could just take him to an opthamologist??? What do yall think???
01-30-2009, 12:31 AM
Oh hugs to you! I'm sorry you have another thing to worry about. I can tell you that lazy eye (strabismus) is REALLY common in coronals. It seems to be in either eye without regard to the fused suture. Once you see your NS/PS, they should refer you to an ophthalmologist (if they don't, insist on one!!!). The Ophth. can check for intracranial pressure during an eye exam. At that time, you will probably get more info on Zachary's vision. Lazy eye is definitely worse when your baby is tired or focusing on something, usually up close, but not always.
Our eye doc found Rohan to be far-sighted at this first check with some strabismus. Further testing found that even with the lazy eye, his brain was "seeing" equally out of both eyes. At that time, we opted for no correction and decided to see what surgery fixed. About 6 weeks or 2 months after surgery, they saw him again (have to wait for all the swelling to go down in the eye orbits). Unfortunately, his strabismus AND the far-sightedness were significantly worse. In fact, the VSP(???) test showed that his brain was starting to ignore input from the right eye.
So now he is in glasses and we go back on the 12th for more testing to see if his brain is seeing out of the right eye equally again. His head tilt and lazy eye are definitely improved with the glasses.
My point, I guess, is that you probably won't be able to tell much until after surgery, but I know Astrid'smommy has glasses on Astrid at 4 months. It just depends on the docs. Try not to worry, but stay on top of it. Insist on meeting with ophthalmology if they don't mention it at your meeting on the 3rd (it's almost here!). Zachary will be fine, even with several months of waiting. But that waiting....argh! It's hard on us, isn't it?
01-30-2009, 01:50 AM
Call the Docs and see what they think. Maybe they can fit him in sooner. (((HUGS))) The worrying can take such a toll...
01-30-2009, 12:29 PM
I'm sorry you're worried.
I would call the neuro. It really can't hurt. Just talk to the nurse and he/she will tell you if it is enough of a concern to move the appointment up.
Waiting is the worst. Hang in there!
01-30-2009, 12:52 PM
My Name isMimi. My son had surgery May 30,2001. Today I just thought that maybe I could find a support group to help other parents out. When I was going thru everything, I don't think I would of made it with out a support group. I am no the greatest with computers. So, I need help on how to start a thread and how to answer somepost.
01-30-2009, 01:04 PM
Yes, I'd get him to a pediatric ophthamologist. For us, we went with one at our children's hospital, as then she had access to all the CT scans, records, etc from the surgeons. When making the appt we said that he had craniosynostosis. Our pediatrician did the referral, as she always had better luck getting us in quickly than if we just made an appt on our own.
We've had three eye muscle surgeries for the strabismus, but he is improving now with 2 hrs of patching/day, so we're quite happy at this point. Strabismus is a long road, but it's great to catch it early!
01-30-2009, 08:26 PM
Well I called the neuros office and they said that since his apt is on the 3rd they can not get him in any sooner...so I guess i am kind of stuck with waiting. I am going to call my sister's opthamologist that did her eyes surgery when she was younger and see if he can go in there on monday or just this week, that way i am not waiting on the nuero to send him. Thanks for the advice.
Why did your son need eye muscle surgery??? Is that common with this, because I was hoping he would only need the one surgery but I see people on here that have to have multiple surgeries so it is kind of freaking me out...how common is that?
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