Pupil not black?

My daughter is 4 months old.

Almost since birth when taking her picture with a digital flash camera her left eye would have a

[John C Hagan III, MD, FACS, FAAO]

There are some very serious things that might cause this problem. Your shild should be seen by an ophthalmologist (EyeMD), preferably a Pediatric Ophthalmologist as soon as possible. Your Pediatrician may help you make this appointment. If you call yourself I would declare it an emergency and should have an appointment within a few days.
This is extremly important.

JCH MD

[TeacherEric]

Thank you.  We'll go tomorrow.
Regards.

[peekawho]

Why did you delete the first comment, by a Med Help forum optometrist?  It was correct and to the point.  In fact, the response by the original poster was to the Med Help forum optometrist, not to you.

Just curious.  All he said was to take the child to a pediatric opthamologist asap, and listed just a couple of the things it could be.  I saw nothing inappropriate in what he posted.  

Why did you delete it?

[circumspect]

When we started this Forum, we were told that the optometrist would not be answering questions. If you want to ask the optometrist a question, go on his forum. This forum is for answers by eye physicians and surgeons (Ophthalmologists or EyeMDs). These ground rules were worked out with the Webmaster and the AAO.

I do not go to his forum and answer questions nor do I append comments when I disagree with his recommendations. We would appreciate if he would extend us the same courtesy.

JCH MD

[NURSELPN]

I enjoy both the OD & the OMD forum & IMO your both great!!

I hope TeacherEric posts an update on how the baby is doing after seeing the OMD.

B
God Bless,
TJ

[peekawho]

I appreciate the fact that this is your forum.  However, RMP OD clearly identified himself as an optometrist, and gave the exact advice that was given later by the forum MD.

His concern was the fact that perhaps it might be a day or so (as happens in other moderate forums) before the official answerer noticed and replied, and his interest as a concerned health care provider was to direct the poster to MEDICAL care (as in pediatric opthalmologist) immediately due to the potential seriousness of the issue.

It was absolutely unecessary to delete his response.  The MD response could have echoed his advice and again urged the poster to seek care immediately.  Lets have respect for each other as partners in the health care field.  I'm sure many patients have been referred to opthalmological care by optometrists, as I was with a serious eye problem.  You are PARTNERS, not enemies.

Your actions of deleting his posts looks childish and petty.  He did it out of an sense of duty to get the poster to an opthalmologist immediately.  He does not go around answering all of your questions.  To my knowledge, this is the only one.  And it was precise, good advice.  By deleting his post, you have done little to encourage people to trust what you do.  

Thank you, and I hope you don't delete this. My next contact will be with Cindy Thompson, the administrator and owner of MedHelp if you do.  

[TeacherEric]

Hello,

I read all the posts and I have a couple things to say.  I am the original poster to this.

First an update on my daughter.

Because of your original response "Forum OD_RMP" to seek attention asap (the one that got deleted) I told my wife that this is serious.  He also listed some things that it could be.  I looked up each of those words and I finally seen a picture of a young girl that has exactly the same thing my daughter has in her eye.

So, first off, thank you "Forum OD_RMP"!  Thank you so very much!

We have been to 3 different pediatric ophthalmologist and 1 ophthalmologist-retina specialist.  We also took our daughter to have a CT scan after each of them examined my daughter's eye and said it's not good, get the scan done now!

It's been pure hell these few days, but the good news is learning that the tumor in my daughter's eye didn't spread to her brain.

That's the bad news.  They said this is a tumor 1.2x1.7 cm big and it's a retinoblastoma type tumor (they all think).  It's in about 80% of her left eye and we need to do something within two weeks time, or it might escape her eye or something.  The consultations with the doctors gets fuzzy, sorry.  

One doctor said we need to remove her eye to save her life.  Another doctor said we can try chemotherapy or radiation but need to keep track of the tumor's growth.  If it grows, then removing her eye is the answer.

The other two doctors we couldn't get too, so we're going Tuesday.  I've never cursed a holiday, but I'm cursing this Monday holiday.

We've also been told of a specialist that we need to speak with (I didn't read the posting rules, are we allowed to post the hospital and dr.'s name?) he's one of the country greats for this type of tumor in children.  He's in Philadelphia.

All the doctors said this tumor doesn't usually happen this young.  Looking back at her pictures we've taken over her four months, we noticed the shine started about March 28th 2007.  I take photos of her 3-5 times a month - first time father!

So, now I sit and wait for this holiday to be over so I can take my daughter to visit two more doctors and 1 chemo specialist while I have this ticking 2 week time-bomb in my baby's head!

aao-M.D.-JH I want to thank you too for your comment.  Because both of you posted the same thing about doing something quickly, it really scared us.  We haven't procrastinated a single minute.

------------------------------------------------------

Now for my other comment as a parent / patient / poster or whatever you want to call me.

After reading the message about who posts what and where... I think what peekawho said was spot on.  What if aao-M.D.-JH was on holiday and didn't answer my post for a few days?  Does that mean I should have to wait for an answer even though there is a professional reading my post knowing the answer, but restricted not to answer?

In a circumstance like mine where life is in actual jeopardy, there needs to be an amendment or exception.

You're doctors or trained professional, me, I'm a computer teacher and a frantic father looking for answers to my little girls problems.  I thank god I found this website and got an answer right away.

Thank you and I'll keep posting updates.

Eric

[TeacherEric]

Hello,

I read all the posts and I have a couple things to say.  I am the original poster to this.

First an update on my daughter.

Because of your original response "Forum OD_RMP" to seek attention asap (the one that got deleted) I told my wife that this is serious.  He also listed some things that it could be.  I looked up each of those words and I finally seen a picture of a young girl that has exactly the same thing my daughter has in her eye.

So, first off, thank you "Forum OD_RMP"!  Thank you so very much!

We have been to 3 different pediatric ophthalmologist and 1 ophthalmologist-retina specialist.  We also took our daughter to have a CT scan after each of them examined my daughter's eye and said it's not good, get the scan done now!

It's been pure hell these few days, but the good news is learning that the tumor in my daughter's eye didn't spread to her brain.

That's the bad news.  They said this is a tumor 1.2x1.7 cm big and it's a retinoblastoma type tumor (they all think).  It's in about 80% of her left eye and we need to do something within two weeks time, or it might escape her eye or something.  The consultations with the doctors gets fuzzy, sorry.  

One doctor said we need to remove her eye to save her life.  Another doctor said we can try chemotherapy or radiation but need to keep track of the tumor's growth.  If it grows, then removing her eye is the answer.

The other two doctors we couldn't get too, so we're going Tuesday.  I've never cursed a holiday, but I'm cursing this Monday holiday.

We've also been told of a specialist that we need to speak with (I didn't read the posting rules, are we allowed to post the hospital and dr.'s name?) he's one of the country greats for this type of tumor in children.  He's in Philadelphia.

All the doctors said this tumor doesn't usually happen this young.  Looking back at her pictures we've taken over her four months, we noticed the shine started about March 28th 2007.  I take photos of her 3-5 times a month - first time father!

So, now I sit and wait for this holiday to be over so I can take my daughter to visit two more doctors and 1 chemo specialist while I have this ticking 2 week time-bomb in my baby's head!

aao-M.D.-JH I want to thank you too for your comment.  Because both of you posted the same thing about doing something quickly, it really scared us.  We haven't procrastinated a single minute.

------------------------------------------------------

Now for my other comment as a parent / patient / poster or whatever you want to call me.

After reading the message about who posts what and where... I think what peekawho said was spot on.  What if aao-M.D.-JH was on holiday and didn't answer my post for a few days?  Does that mean I should have to wait for an answer even though there is a professional reading my post knowing the answer, but restricted not to answer?

In a circumstance like mine where life is in actual jeopardy, there needs to be an amendment or exception.

You're doctors or trained professional, me, I'm a computer teacher and a frantic father looking for answers to my little girls problems.  I thank god I found this website and got an answer right away.

Thank you and I'll keep posting updates.

Eric

[circumspect]

Hello Eric,   I am most sorry that the concerns expressed by the optometrist and myself were true. I'm glad that you are in good hands and that things are moving quickly. There are many fine physicians and several excellent world eye referal centers in Philadelphia. I am most familiar with the Wills Eye Institute in Philadelphia. They have many fine staff physicians and take care of problems like this from all over the world. I have taken several courses on eye tumors taught by Jerry Shields MD of the Wills Eye staff.  Know however that retinoblastoma is the most common maligant eye tumor of childhood and sad to say there are many highly capable ophthalmology-oncologists that have experience with it.

We are working with the American Academy of Ophthalmology to try and insure that questions will be answered within a 24 hour period, that back-up is available for Forum EyeMDs and to recruit other eye-physicians so that we can answer more questions daily, and that conflicting or confusing advice is avoided.

Out thoughts and prayers are with your child and your family.
JCH MD

[Felis]

"After reading the message about who posts what and where... I think what peekawho said was spot on. What if aao-M.D.-JH was on holiday and didn't answer my post for a few days? Does that mean I should have to wait for an answer even though there is a professional reading my post knowing the answer, but restricted not to answer?"

This forum doesn't replace actual doctors. If parents notice something really strange in their child, they should contact his/her pediatrican immediately.

[Nancy T]

I agree with Felis--a forum doesn't replace contacting one's own doctor when there is a scary or immediate problem.

I agree with another poster that optometrists and ophthalmologists should be, and I presume generally are, partners.

However, two optometrists that I saw over three years were obviously at sea with, and unconcerned with, a strange vision problem I was having, yet neither of them bothered to refer me to an ophthalmologist. I finally referred myself, and got my problem solved by an MD who didn't give up on me and who of course knew far more than the optometrists. (Just one person's experience.)

Very best of luck to the little girl and her parents.

Nancy T.

[Felis]

I can only speak of my experiences. The primary job of OD's is to correct refraction errors by prescribing glasses or contacts (Sure OD's can do more than that). However, they are not MD's. Thus, eye diseases should be taken care of ophthalmologists. Certainly, that's the norm at least where I live based on my own experience (New York). For instance, I have had my share of eye problems and my world-renowned retinal specialist at NYVRM has told me that he doesn't know much about correcting refraction errors and he always has an OD at NYVRM take care of my glasses (so has my ophthalmologist).

[NURSELPN]

I thank God for all the physicans on these forums. IMO, They are all a blessing & we are very lucky to have them. I'm in the medical field & beleive me not all physicans would give their free time to do this. And  I'm sure that baby mentioned seen a pediatrician regularly since birth. The doctor didn't notice or say anything so why would the parents think it was snything urgent? Thank God this web site was here to ask a question.

TeacherEric,
Your daughter & family are in my prayers.

TJ

[Felis]

As Yoda once said, you assume too much.  

[TeacherEric]

Well another update (and probably the final one).

It was last Thursday I believe when we were playing with our daughter on the bed and noticed something strange.  Today is one week and a day later (Friday June 1st) and I'm typing on my laptop in the hospital with my 4 month old baby sleeping next to me.

She's had her left eye removed and right eye tested if it has a tumor as well. Thank god it doesn't.  However, the scare isn't over yet.  The doctor has to have the tumor'ed eye tested at the optic nerve to find out if the tumor spread past the eye.

Before we leave the hospital the doctor also has to do a spinal tap and a bone marrow test to make sure there are no other cancer cells in her body.

When my wife and I started looking at our baby pictures we noticed that the "white pupil" stated about March 28th.  Looking in her baby medical book, we've been to her doctor twice in this time frame.  

I do admit total and absolute fault in not being diligent with my doctor in this matter as it might have saved my baby's eye.

My doctor stated there are about 200-300 cases of this per year in the states, but in my neck of the woods, it's more like 15 cases in 1 - 2 years.  So it's no wonder my doctor didn't see it.

Take care, God Bless, and please spread the word!

Thank you.
Eric

[Nancy T]

Eric--so sorry they were not able to save your baby's eye. Please do not blame yourself in the least. You are not a doctor and had no way of knowing anything was seriously wrong. We notice so many odd things about our own and our children's bodies, and since almost everything turns out to be nothing, we must forgive ourselves for not having consulted a doctor sooner about something that seems innocent but turns out to be serious.

I lost the hearing in my left ear when I sneezed hard 8 years ago. I thought it was just temporarily "plugged up," and even the two GPs I saw in the next few days (for dizziness) didn't realize that I had had a sudden sensorineural hearing loss that should have been treated by a specialist immediately. The loss wasn't diagnosed until a month later, when I requested to see an ENT--and by then, any chance of saving my hearing was gone. But who knew? (The GP should have checked, but since sudden hearing loss is uncommon, he didn't bother.)

I hope the further tests on your daughter all turn out negative. Children are extremely resilient and adaptable, and their young brains are so "plastic" that they can compensate for an amazing amount of damage. Good luck to you.

Nancy T.

[Nancy T]

Related to the (off-topic) discussion of optometrists and ophthalmologists, I just received a newsletter from my former optometrist's office with a rather astounding article on how to choose among "a private practice optometrist, an ophthalmologist, or a chain store optical."

I wouldn't necessarily argue with the article's statement that "optometrists perform more vision tests resulting in a more accurate prescription" (I don't know that for a fact, but I do know my optometrist was thorough and gave me good prescriptions); and I can't speak to whether "opticians who fill prescriptions know that the redo rate for optometrists is about half the redo rate of ophthalmologists."

But I take issue with their claim that the optometrist "can do everything for the eye but surgery" (and even then, they say, they'll do your post-op cataract-surgery care). My optometrists didn't try to understand or fix the weird ghosting-after-reading problem that I have. It took the ophthalmologist to do that.

I'm sure optometrists are well trained and can provide a lot of help and services, but to claim that you never need to see any other eye expert except for surgery seems ludicrous!

Nancy T.

[arturoycristy]

A related discussion, black pupil but i still can see inside my baby's eyeball was started.