Congenital cataracts

[Emilysmom]

I know.......maybe I should post this on the medical board, but I'm probably just venting. I took Emily for an eye exam yesterday. I was really pleased because we just recently found a pediatric developmental eye doc in our town. For her past 2 eye exams, I have had to take her to Nashville........and they are always so busy; have to make the appointment months in advance! So, I was thrilled to find this guy.

So, we get there and I was proud of Emily.........she talked to the guy, answered his questions, ALMOST made eye contact with him, and did everything he asked her to do. In the middle of the exam, he turns to me and says "What have they told you in the past about her cataracts"????? I was like......."WHAT"??????????????? He tells me that she has fairly large congenital cataracts, and he is surprised that no one has ever mentioned it to me before. UGH. He says she has to have bifocals, and that will help with her right eye turning in. (the whole reason she went for the visit is because her right eye has started to turn inward even more than it used to) .

I know there are all sorts of things that are harder to deal with than this........but it tore me up. But then, when she was 6 and we found out that she needed glasses, I think I was nearly as upset as I had been years before when we heard that she had Ds. I'm not sure why! She got fitted today for the bifocals (had to go back because her eyes were SO dilated yesterday that they could not determine where the center of her pupil was!).

She'll adjust, I'm sure. But she has never worn the glasses except to read so it's going to take some convincing to "sell" her on the idea of wearing them all the time now.

Susan

[ValerieC]

Susan,

A friend of mine just told me her 3 year old was diagnosed with the beginnings of cataracts. I'm sure it's tough to deal with. You're right Emily will adjust. Just give her some time and some extra patience.

Valerie C

[Valerie]

Wow! I can't believe that wasn't noticed before! I'm sure Emily will adjust to the glasses and do just fine!

I do understand how you feel, though. I was the same way when we were thinking Nicholas had hypothyroidism. Not a huge thing, certainly treatable, but just one more thing for them to deal with. Is that kind of how you feel?

[wrblack]

Uh oh, maybe just more occasion to get into trouble with new or newly reconstituted moderators. But, hey, Susan, I think you should be glad, jumping up and down for joy glad, that Emily's cataracts have not been much of a problem so far. And it's also very good to have a good pediatric ophthalmologist who will stay on top of this and monitor closely to ensure that they don't interfere with vision, remain visually insignificant.
I could go on and on about congenital cataracts, surgeries, contact lenses, losing contact lenses, intraocular lens implants. But I'll try to control myself, for once, will just tack on an old photo of Charlie taken just a few days before he had his first cataract surgery, he weighed a bit less than 2 1/2 pounds at the time.
My impression is that about 3 percent of kids with Ds come with built-in cataracts. But maybe only half of those kids have big, bad, central cataracts that require immediate surgical removal. I worry about any of those kids' cataracts getting missed. Vision is as much, or more, a brain thing as an eye thing. And if a baby's visual cortex doesn't receive sufficient stimulation during first 2 to 4 months of life, then chances of developing adequate vision are quite poor. So, if pediatrician doesn't get a good, solid, even red reflex from a Ds baby on first visit, should immediately refer to a good pediatric ophthalmologist. Good pediatrician will be sure to be good friends with a good pediatric ophthalmologist.
And then there are a number of good things about cataracts not being visually significant early on, being able to wait until kid is older before ever having to do anything about the cataracts.
But I'll be glad to add Emily's name to my (fictitious) Down With Cataracts group.
Just my distorted perspective on this,
Bob

[Emilysmom]

Valerie,
Yes........that is exactly the way I felt. It's not a horrible thing. And, yes.......she has been SO fortunate to never have health issues, and it's WONDERFUL that the cataracts have never been a problem for her visually in the past. But it IS one more thing for her to deal with, and she has always hated wearing her glasses.........so I'm pretty sure this teenager will not enjoy bifocals.

However.......when we went to pick out her frames, I told her she could pick out ANY pair she liked. She picked out a pair of RED plastic frames and my immediate thought was "nooooooooooooo, they'll break too easy and she'll look like Sally Jesse Raphael"!!! So, I "gently" encouraged her to look at the metal frames and she picked out a light blue pair, very similar to what she has worn for the past 2 years. Then, I found out that the place was doing a "buy one pair, get one pair free" thing.........so she gets BOTH!
The minute we got finished, she looked at me and said "now, can we go out to eat"? LOL I was all for that!

Susan

[momofrussell]

Well. Susan.. you and I have already talked about this. And well, I can't add much more then Mr. Bob has said.. since Russell already belongs to that psuedo club he mentioned LOL. I too think eyes are SOO important on so many levels... having experienced what I have with Russell.

Hugs!!!!! And I bet Sally, I mean Emily, looked MIGHTY cute in those red frames!!! heehee

A.

[Jessie]

Ok, so I'm a little dense here - congenital means that she was born with these cataracts, correct? Is that what upset you about them not being mentioned before? I guess what I'm asking is that she didn't just develop these, right, she's had them all along???

See, I can be really dense sometimes . . . but I can admit it and that's half the battle, right! LOL

Can't wait for you to post a pic of Sally/Emily. Hee hee hee


Jessie

[momofrussell]

Jessie.. I asked Susan the same thing! Because somewhere in the course of our conversation it seemed maybe Emily might have always had these? Because, yes, "congential" means from birth... like in the case of Russell and his buddy Charlie here. But... I guess if you never knew before now.. how would one really know if they were congenital? Or the doc used that term out of context?

I too was wondering this with Susan. So.. I don't think dense comes into play here

A.

[rickismom]

I once posted on the medical board about bifocals for kids with DS maybe being needed more than once thought. So I thought that I would copy it here in case someone hadn't seen it.
Ricki ALWAYS has two glasses... one to wear and one to LOOK for/ fix . Always in two colors. SUPER DUPER wardrobe coordination, LOL

my post on eyeglasses...
I recently saw this and thought that maybe not everyone here would know about it. It is necessary, when getting your child's vision checked, that the also check for accomadation in close vision:

Accommodation (focusing at near)
Conventionally, we measure visual acuity and refractive errors for distance targets. However, children spend relatively little of their time looking into the distance. Children's interests are mostly close at hand, and this is where most of children's learning takes place. It is here that we find the greatest differences between vision in children with Down's Syndrome and children who do not have Down's Syndrome..
Usually, children focus very easily and very accurately on near targets and it is only as we approach middle age that we expect to experience difficulty. We find, however, that most children with Down's Syndrome focus very poorly- they tend to under-accommodate by quite a large amount, whatever the distance of the target. This is consistent for any individual child, and persists even when the children wear their glasses to correct long sight. This means that close work, especially in school, must be more difficult for these children because it is out-of-focus.
We do not yet know the reason for the poor focusing. One explanation might be that the children's visual system does not recognise blur as easily as the visual systems of people who do not have Down's Syndrome. An alternative explanation is that the co-ordination between the two eyes is weak and might mean that the focusing mechanism does not get the usual feedback from the alignment of the two eyes. We have studies underway to examine these possibilities.
Whatever the reason behind this poor focusing, there may be a link with the other problems that the children develop. Emmetropisation is not well understood, but seems usually to occur because the eyes recognise that the image is out of focus, and that can signal to the growth mechanisms that adjustment in size and shape of the eyes is needed. It may be that inadequate recognition of blur causes poor accommodation in people with Down's Syndrome and the same fault prevents the eyes from achieving proper growth towards emmetropia. Similarly, the poor focusing means that the eyes have an out-of-focus image whenever a child looks at near objects, which is most of the time in young children. This may mean that fine discrimination mechanisms do not have the opportunity to develop, and that visual acuity is always poorer than it might otherwise be. The above links are, for the present, speculative, but we do have some evidence from our study to back up these possibilities. Some of the children in our study focus accurately, and have done consistently since an early age. Some other children are improving their focusing as they get older. These children and young people are much less likely to have refractive errors and are much more likely to have good visual acuity, than the children who focus poorly.
Our latest study shows that it is possible to dramatically improve the children's focusing with bifocal spectacles. In a controlled trial, we supplied bifocals to a group of 17 primary school children with Down's syndrome, and conventional spectacles to a second group (the control group). The two groups were matched for all of the factors that might influence spectacle use or near work, such as age, cognitive ability, school placement, etc. Over a 20 week trial, the children in the bifocal group consistently focused more accurately on near work than did the children in the control group.
In the trial, and now that we prescribe bifocals clinically, we find that children with Down's syndrome wear bifocals very successfully. None, so far, have encountered any problems, and several of the children prefer to wear their bifocals all of the time rather than keep the for school use. Two children were very reluctant to wear glasses when they had conventional ones, but now wear bifocals very happily. In some cases, teachers and classroom assistants have reported improvement in concentration and quality of work when the children wear bifocals. We are now, therefore, recommending that all children with Down's syndrome who show poor focusing are prescribed bifocals.
The positioning of the bifocal is very important. The top of the bifocal should lie across the child's pupil (this is a much higher position than usual for bifocals) so that the child can look down through the bifocal without effort.

see:
www.cddg-downs.org.uk/doctors/parenthandout_vision.doc

for full info and oic of bifocal size

[heidiashliesmom]

Wow what Im surprised about is that noone ever pointed it out to you before, but the good thing is it hasnt caused that many problems with her vision this whole time.
I know it still must have been hard to hear but I cant wait to see pics of her in them new glasses

Hugs
Heidi

[Alice]

Susan,

I am so sorry to hear about that.
Can you have a second opinion? Could this doctor be wrong?
Hugs to you and Emily...

[Kristen]

How did no one see that in the past? Geesh! I do know how you feel - the first eye doctor we tok Carter to took one look at him (barely his eyes) and said eye surgery in a month, glasses now and forever. WAAAAHHH!!!! I took him there because I was being overly cautious about an eye that occsioinally turned in and THIS? I was so devistated. In the end I did a ltitle researcha dn founda new opthamologist before I did anything and he confirmed what I thought - his vision at 20/30 is normal for his age and bilaterral strabismus signifies a motor path developing so wait on it because it isn't affecting his vision. One year, starting to walk (I think it had a little to do with it) and no glasses later, his eyes were proclaimed STRAIGHT and his vision NORMAL! Opinions are just that. If you really trust him, go with it, but if you want it looked into a little more, I would do that, too. It really is not that juge of a deal, but no one wants their kids to have anything "wrog" with them, so I do understand how you feel! At that same time with Carter we had to have his hearing test done twice because he quit cooperating in the booth half way through. I *knew* that was the case and he passed no problem on the revisit, but I still sweat and cried plenty at the thoguht that a month ago he was "fine" and now because i was being proactive he was going to have lifelong glasses, eye surgery and hearing aids! That was a lot of crying for a while.

[Debbie]

I have been wearing glasses since I was about nine or ten years old. My first pair of glasses were your typical nerdy type black frames. They were probably the only glasses that fit me. I have been wearing glasses since.

Red is not so bad, is it Susan? I admit, I thought that was funny what you said. I saw Sally Jessy right away in my mind when I read that. I laughed. I don't know if I would wear big frames again. I did and they made me look funny!

My glasses don't fully correct my vision because of the Nysigmatism. My eye doctor really can't do anything for me but just check me out and make sure my eyes are okay.

I have never had cataracts. Wow, and Emily is what, thirteen, maybe fourteen?

Has she seen The Ringer? I did. It was okay. My favorite character was Glenn and Thomas. It was a strange plot. I thought Johnny Knoxville was cute though. ;D