Hi Ladies, have any of you ever dealt with a missing Red Reflex? My little has Spina Bifida so he is seen at CHOP - these doctors are world class, Harvard educated people. He had clinic there recently, they checked his eyes and they said everything looked good. Well, our pediatrician (Also CHOP, just not at the main hospital in Philadelphia) looked at his eyes last week at a well visit and said that she doesn't detect any Red Reflex in one eye.
This could be Childhood Cataracts, Retinoblastoma (I'm terrified), or nothing, he may just have small pupils and it isn't easily detected.
He doesn't have any Retinoblastoma symptoms, thank God, but I'm so worried...does anybody else have experience with this?
PHEW!
So I called the pediatrician and let them know I wanted a call back for more information as I was very worried and wanted to know what was going on.
Turns out the receptionist misread the doctors notes....she said nothing about Red Reflex, the appointment is related to the asymmetry in his right eye due to it being slightly misshapen due to his positional plagiocephaly....which we are addressing at his 2/21 appt.
THANK. GOD.
can you take him to a child eye specialist and have them evaluate the eyes. a pedi is trained in many areas but does not specialize in any specific one. i think a specialist would be better able to answer your question and help you with deciding on what to do if there is an issue.
That's one opinion from one doctor. Was this a pediatric ophthalmologist? If not, please ask for a referral to one. Even if it was, please ask for a second opinion.
The wonderful thing about being in a major hospital is that you can (and should) put together a strong, inter-disciplinary team. I would think that would already be set up for a child with a significant issue like spina bifida. If not, talk to one of the social workers about your confusion/concern and ask for help in getting a team approach. Your child should have been assigned a case manager - again, if not, get one.
Good luck! No way you should be put into a panic about retinoblastoma after just one exam.
I could tell you everything's alright.
Or I could tell you of impending disaster.
One answer or the other will be wrong.
And I have no qualifications to answer the question in the first place and even if I did no doctor would tell you anything without examining your child and doing a health history.
Other peoples experiences and how they turned out has nothing to do with what ever (if anything) is going on with your child.
PLEASE see a doctor and get specific answers that pertain to your immediate situation.
Could be this - could be that - could be something else - just stop with that and put down the internet - it's not helpful and will only increase your panic.
And when you DO see a doctor - if they say anything you don't understand or makes you more worried - don't let them off the hook without getting answers to your questions.
Guess I'm confused. Receptionist read notes wrong? So where did Red Reflex statement come from. A doctor or a receptionist??
