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4455258 tn?1354834496

Extreme Pathological Myopia in a 5 year old.....

My daughter is now 5 years old.  At age one her prescription was a -19 and has steadily worsened.  We just went for a checkup this week and she is currently at a -28.25 in both eyes.  We are going back Monday to have her eyes checked while dialeted to make sure of the prescription before we order yet another new pair of glasses.  I have searched for 4 years trying to find an adult with her vision so they can tell me what she sees.  There has been a language barrier due to her profound hearing loss in both ears.  She does hear w/the use of hearing aids, but it has put her behind in speech.  She is a LOT better than she was and basically talks non-stop now, but the only thing I can get out of her is 'it's blurry.'  From what we've been told there is only about 2% of the population with her vision, which would make sense as to why I've never been able to find someone.  There's two things that makes it hard for me to understand.  One, I've never had glasses and two, she gets around just like any other child her age.  They keep telling me that she was born with it so that's basically the norm to her, but she absolutely amazes us which something new basically each day.  She definitley has the personality to overcome!!  

Now that you know a little history......
Is there ANYONE that HAS her vision or something close to that can answer some questions for me?  ANY help from someone that lives this would be GREATLY appreciated.  THANK YOU!!!!!


This discussion is related to High Myopia in Children.


This discussion is related to High Myopia in Children.
11 Responses
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233488 tn?1310693103
MEDICAL PROFESSIONAL
I do not know any personally. You can go to www.geteyesmart.org and look for a pediatric ophthalmologist near where you live.
Helpful - 0
Avatar universal
My son have high myopia -16and stasionarry night blindness both eyes and his 4 years old I need a doctor for this case I leave in new York to help him the max to slow his myopia progressive
Helpful - 0
233488 tn?1310693103
MEDICAL PROFESSIONAL
I do not know any personally. You can go to www.geteyesmart.org and look for a pediatric ophthalmologist near where you live.

JCH MD
Helpful - 0
Avatar universal
My son have high myopia -16and stasionarry night blindness both eyes and his 4 years old I need a doctor for this case I leave in new York to help him the max to slow his myopia progressive
Helpful - 0
233488 tn?1310693103
MEDICAL PROFESSIONAL
-
Helpful - 0
4455258 tn?1354834496
Thanks again!  We've known that kind of thing since day 1, 4 years ago.  We were told immediately about the risks of contact sports, hard hits to the head, etc.  She's VERY happy....and we're VERY cautious! ;)
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233488 tn?1310693103
MEDICAL PROFESSIONAL
I know both of those two pediatric ophthalmologists and they are world class and the referactive surgery pediatric center is the first of its kind in the world.

Be sure to discuss with the peds Eye MDs things like eye protection, recommendations for sports, amusement rides, etc.

JCH MD
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4455258 tn?1354834496
Dr. Stahl and Dr. Olitsky are doctors that we see.  Children's Mercy in KC is the team that keeps check on the things you mentioned above.  She has been 'put under' and checked for retinal tears/detachment signs, etc.  Her vision and ears are something that we keep a VERY, VERY close eye on.  As far as the syndromes/disorders/diseases.....  we are actually going back up there this week (on the 13th) because Ky had a microarray done and we are going to meet up with the genetics team to see if Stickler's, Marshall's, Usher's, etc. are going to be diagnosed.

Thank you SO much for the reply!  Everything you said is on the list of things we have already been doing/working on.  It tells me that we are still on the right track!
Helpful - 0
233488 tn?1310693103
MEDICAL PROFESSIONAL
Your child has pathologic progressive high myopia. At age five her vision should be easily quantifiable by how far down the chart she can read with glasses on. It is not possible to tell her vision from the glasses RX just as its not possible to tell a person's weight or height from knowing their shoe size.

She needs to be under the care of a pediatric "team" as she likely will need to see a pediatric ophthalmologist and periodically a pediatric retina specialist. You don't indicate where you live.

Many US ophthalmology departments are set up to take care of young patients like your daughter. Emory University in Atlanta where I trained is one place and the Department of Ophthalmology at Kansas City's Children's Mercy Hospital is another. Often exams need to be done  under anesthesia and these clinics do them right there rather than the hospital.  Children's Mercy Hospital in KC  Missouri has set up the first Pediatric Refractive Surgery Clinic under the direction of pediatric ophthalmologist Scott Olitsky MD and Erin Durrie Stahl MD.

Be sure your other childre if any are checked as well as nieces and nephews as this often runs in families. These problems are more common in premies and low birthweight. Also there are a group of diseases (syndromes) in which Ear and Eye abnormalities occur together (e.g. Usher's Syndrome).

JCH MD
Helpful - 0
4455258 tn?1354834496
First off, thanks for the reply!!

I have asked about having her lenses thinned, but you can't w/her prescription (from what I've been told).
As far as me looking through her glasses, I have done that before because I had read before that that was the solution, but then I heard it wasn't.  
About contact lenses, her eye doctor had said that he has seen a lot of little kids wear them, but she is scared of them at this point so I'm not going to force it on her.  She'll get there eventually.  He said that she would still have to wear glasses, but nothing like the ones now.  We went ahead and ordered her a pair and went in for a few different appointments to try to get her to try them on, but she was too scared.  She was all about watching me do it since I stupidly volunteered....never having wore contacts before.  I was SO glad I did it though because I was surprised with how they felt.  I always thought that it would really feel like having something in your eye, but it really wasn't bad at all.  I had to ask the girl that was helping if it was really in there or if we were just trying to fake Ky out so she'd try them.  So, until SHE'S ready to try them, we're stickin' to her stylin' frames. ;)

Helpful - 0
Avatar universal
Hello,

I have an eyeglass prescription of -19.75/-20 with an astigmatism. The glasses your daughter is wearing look like the ones I wear. When I was her age my glasses were awful, they did not have many choices. Ask about having her glasses thinned, if you have not done so already. I am 27 now and have lived with this most of my life.Once she is old enough for contacts she will be very grateful. I actually feel I see better with contact lenses

One way to get an idea of how she sees is to put on her glasses. The way you see with her glasses on is how she sees without her glasses. Just do not wear them for a long time since they can damage your eyes.

If you have any other questions I would happy to answer them.
Helpful - 0
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