Prognosis of refractive amblyopia in 5 year old child

[OLDCOT]

My 5 year old daughter was seen for a well child check by a new ped today and the ped strongly recommended an eye exam ASAP.    

There is a family hx of esophoria in myself and my oldest daughter, as well as moderate hyperopia (my oldest and I are both +3.00 with about 6-8D of eso).  My own hyperopia wasn't treated until my late twenties and the eso not until mid thirties when I started becoming an early prebyope.  I now wear prism, although I still don't think I really fuse.  Esp when I am tired I know I am alternating.  My oldest daughter was put into correction at the age of 9 when headaches and attention problems became apparent.  We're both 20/20+.  My daughter does fuse with her prism.

I have suspected my youngest had visual problems from early on.  Before 1 yr of age she had exhibited eso on concentrating, but my other daughter and I (according to mom) did this and I didn't worry about that too much.  I did start to worry when she was about age 2 and I noticed her turning her head when she really wanted to see something.   She didn't seem to track objects well, would often not see something she was looking for when it was right in front of her, and she didn't like to color or do other near tasks for very long.    I dropped by the office of an old boss one afternoon and expressed my concerns.  He checked Hirschberg and red reflex and said he thought she'd be fine.  I stopped worrying quite so much but I was still a little concerned.

Today the ped ( we saw someone new as our regular dr is on a leave of absence) was concerned enough about her tracking to use a hand held autorefractor on her and she presented with +6.00 OD and +9.00 OS.  I was floored.  Obviously I understood the dr's concern that we get her seen and corrected ASAP and I have an appt early next week for an exam.  I was a little bouyed by the fact that my dtr's acuity did measure at 20/50 in each eye.

My concern is refractive amblyopia.  I am a COT of 20 years and have long observed the "about 6 years of age" rule.  I have done some googling to get some more info and the studies out there are confusing.  

What is the prognosis for a child not detected until 5 yrs of age?  

What is the realistic expectation for acuity in the +9.00 eye after correction?

Will VT be an absolute necessity for best acuity, or is it possible correction alone will bring her up to near normal acuity?

Now I know how all those parents who brought -5.00 and +6.00 patients felt when they found out their little ones had been missing so much for so long.  I also know now that this child of mine is not clumbsy or hyper or careless - she can't see!  

I'm very frustrated because I didn't follow my gut and pursue this beyond that cursury exam in spite of my suspicions and eye care experience.  What experienced COT has a child who is amblyopic due to pure refractive error?!  I am so angry with myself.

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

Your prayers were answered. Great.
JCH MD

[OLDCOT]

We got some very good news today.  Our little one is just fine.

She did end up with some glasses, but only because she has some astigmatism.

I asked the doctor about the print out we'd received and he said the large number on the left eye (9.9) did represent cylinder, but that the operator must not have been very skilled as they received an obviously incorrect reading.

Her rx is
+2.00-1.75 x 164
+1.75-2.00 x 054

She refracted with a little more plus and a little more cylinder, but he didn't give her all of it because he didn't think she'd tolerate it.  He said this astigmatism might account for her chronic head tilt and for her habit of turning her head to really see something well.  He believes this will resolve as she gets used to her correction.

She does have a mild esophoria in the left eye, but it is only about 2D and he felt it did not need correction at this time.  She corrects to 20/25 in each eye - at least that's the best she could see while cyclopleged.  He felt certain she had 20/20 potential.  He also felt it was not enough to account for her head tilt or head turning.

She picked out two pair of glasses and once she put them on, she wore them every  second until she went to bed.  She says they make things look big and crooked, which makes perfect sense, but she must like them.  I hope that enthusiasm continues.

I'm interested to see if this changes her behavior at all.  My oldest definitely behaved differently after she got her correction - less distractable, better organization, just calmer over all.  It will take some time to tell, but I wonder if we'll see the same in the youngest.

Thank you for all your feedback.  I can't say how relieved I am to get this result.  

[berrywoo]

I read an article recently that may give hope to kids older than 5 years old w/ amblyopia. According to this article doctors are testing phakic lenses in children with anisometropic amblyopia who are generally considered to be too old to be corrected. The writers of this article hope that phakic lenses will be approved for use in children, since so far it does show some promise.  

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

You're a good person and I apologize if I was too rough on you. I used to do a lot of pediatrics so I've been through this with many parents.

Concentrate on helping the amblyopic eye see as good as possible and doing everything to protect the good eye from injury or disease. And educate all your kin to stamp out amblyopia and strabismus in your family.

JCH MD

[OLDCOT]

The autorefractor that they used (a general pediatrician's office) was a portable hand held one.  They are small with a charging stand with a small portable printer in the charging stand.  Readings are taken from about 14" from the patient, aligned by a focusing mechanism that makes use of the corneal reflection of a fixation light.  (at least that's how the one I used - a different maker and model - worked.)  Then the unit is returned to the stand and the readings are obtained either by reading a small display inside the refracting unit or by printing them from the printer once the unit is docked in the stand.

I have used them a couple of times at health fairs and the like, but not often, and my experience with them is limited.  That's why I wasn't sure what I was reading - unfamiliar with the format of that print out.  I'm harboring the hope that these portable autorefractors can be as inaccurate in comparison to a table top as a tonopen compared to goldmann.  When I used them in the past, we considered them at best a screening instrument.  I don't know how realiable this model is, how well trained the nurse who used it was, etc.

If you'd like more info about them you can google "welch allen suresight".  I did this earlier, but didn't find much by way of accuracy reports.

And please know I do know all dr's make mistakes.  I still hold this man is the highest of esteem and always will.  He is not only a remarkable dr and world reknowned surgeon, but he's an outstanding human being.  He was one of the first surgeons I ever worked for and taught me the foundation of everything I know.  Today I run a small telehealth clinic for monitoring DM retinopathy, no small feat for having started at 19 as a displaced waitress.  I owe it entirely to him and the strong start he gave me.

I don't even really feel he made a mistake.  I was concerned and looking for reassurance, he made a cursory evaluation for a gross abnormality and found none, and I took my daughter home.  As I have said, if there's any fault, it is mine.  To be honest, if she had been the child of someone else who brought her in to a practice for me to work up, I'd have been on this like nobody's business.  But as her mother and a tech, I didn't want to look like I had med school-itis .... the sort of thing where you think you've got every disease you're studying.  Am I making any sense at all?  I'm not sure I am able to say exactly what I mean.

Anyway, you've been very kind to make response.  I'll come back and post the outcome of the oph exam for no other reason than to put the info out there for others who may be looking for answers.  Thank you for giving me your opinion of the print out.

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

We use an autorefractor and find it very helpful and useful.  I don't know what a hand-held is? The autorefractor is heavy and sits on a stand.  I am not familiar with that printout but if its like most then the glasses RX would be

Right eye: +6.00 Sphere -0.50 axis 21 degrees

Left eye +7.00 sphere -0.75 axis  99 degrees'''

You will need to confirm that.

Remember that a young child has over 15 diopters of accommodation and thus could see as good as 20/25 on vision testing.

Yes thanks for sharing your thoughts. No physician is infallible and every physician is wrong at some point. I try and make it a point to say every exam "if this gets worse, something new develops or if this doesn't go way come back for more testing or I'll get a second opinion"  I also so say "do your have any other questions or do you want me to go over what I've told you". It s worked very well for my practice.

I do wish you the best.   Its a failure of both physicians and parents that so few children as seen by an ophthalmologist or at least have a valid visual screening before they enter school

JCH MD

[OLDCOT]

Thank  you for your timely response.  I received it almost immediately but have only now had a chance to respond.

I was falsely hoping for some encouragement, but everything you said was what I already knew.  Now I just have to hang on until the exam next week and hope by some thin chance she's beat the odds.

I do have another question.  My mother had taken her to the exam in my stead and was giving me information over the phone.  This evening I received a copy of the print out from the refractor that mom had requested.  I have not used a hand held autorefractor but a few times and this print out is a little hard to decipher.  I am hoping you or someone can help.

welch allen suresight

R 6    S-0.5  *C+2.1
L 7    S-0.7  *C+9.9
*D9.9 child (6 & under)

I think I am reading this as the machine took 6 readings OD, found an average of
-0.50+2.00 at an unknown axis and 7 readings OS with an average of -0.75+10.00 at an unknown axis.  Is this correct?

If so, it's still dismal for the left eye, but maybe the right is not so bad off.  

I thought I remembered the welch allen not having that much diopter range for cylinder?  

In any event, does anyone know how accurate these hand helds are when it comes to cylinder?

It's been bothering me all day because I couldn't fathom that an eye with a +9 error would be able to see 20/50 no matter how young and able to accomodate that pt may be.  And now, reading this and realizing the primary issue may be astigmatism - well, I just know no one with 10D of cylinder can see 20/50.  My greatest hope is that the machine was not accurate in this reading.

I agree with so much of what you said in your response.  Anyone reading this should take heed.  Someone with my background having a child with this type of preventable visual loss is appalling..

Would also like to add a note for any drs who may read this...  Please, please listen to the parents of your ped pts!  I did take her for care at a reasonable age (2 yrs old), but the dr - a very highly respected oph of some 30+ years practice - didn't want to stress her when his preliminary findings were satisfactory for him.  I had worked for him for many years in the past and had never questioned his judgement.  In my gut I still wasn't sure everything was fine, but not wanting to be a difficult parent I was lax when I should have been more insistent.  I don't blame him, but I do blame myself for not pushing.

Today's parents face odd societal challenges that no previous parenting generations have.  The common sense that should be a part of our parenting is legislated away from us.  Disciplining your children in front of the wrong neighbor puts you at risk of someone taking your kids from your home first and asking questions later.  The media sends mixed and frightening messages - all the kids are fat because they don't go outside to run and jump and play as they should, but the world is full of crazy people so by all means don't let them outside out of your sight.  We live in fear that we'll choose the carseat that will be recalled or some nut will track our kids down from a family photo on the web.  It's a crazy culture of paranoia that leaves every one of us questioning our very guts.  

And we know it's all **** for the most part.  We're rational.  We're reasonable.  We know it's paranoia.  So we don't want to buy into the paranoia - seeing kawasaki disease in every carpet cleaning or asking enough questions of the dr to be labeled the potential munchausen mom.  We smile and nod as the dr talks and pay the bill and go home, because anything more is running the risk of being one of THOSE moms - the frequent flier with the 3 page list of questions and concerns.

But in the end, you must listen to us.  We may very well be crazy.  We may make you crazy.  We may make you wish some days you'd become an accountant instead of a dr - off in a cubical with no one to bother you.  But please do listen to us anyway. Because in the end, a mother's gut is really all she has to guide and protect and care for her children, and when her gut tells her to push, it's usually right.  I should have pushed.

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

You have every right to be angry and should be upset especially as a COT.  All children should be watched closely from birth for eye pro blems and if anything is noticed eyes not straight, child not see well, pupil looks white then see an ophthalmologist immediately.

Children with family history of strabismus or amblyopia should be checked between age 2.5 and 3 and yearly thereafter until a bout age 7.

Children with no history of eye disease and no observed probblems need exam age 3 to 3.5.

Amblyopia is very difficult to treat at age 5 or older.

The expectation of good vision in the +9.00 eye is not good. Patching is very difficult. There is a large amount of aneisometrophia. The glasses will make the eyes look larger.

I suggest you get her under the care of a university medical school department of ophthalmology. She may need contacts, she may be a candidate for hyperopic refractive procedure.

GET THE WORD OUT TO ALL YOUR BLOOD RELATIVES. YOUR FAMILY HAS A VERY HIGH RISK OF STRABISMUS AND AMBLYOPIA PERHAPS AS HIGH AS 20%. EARLY CHILDHOOD EXAMS BY OPHTHALMOLOGIST ARE ESSENTIAL TO PREVENT ANOTHER TRAGEDY LIKE THIS. ALSO THE PROBLEM OFTEN SKIPS GENERATIONS SO NOONE WITH YOUR GENETIC MATERIAL IS EVERY OUT OF THE WOODS.
LEARN FROM THIS EVERYONE.

JCH MD