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Cataracts & Surgery


 
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thaidyed
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Joined: 13 Apr 2010

Last Visit: 05 Oct 2010
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Location: Laos

PostPosted: September 03 2010, 2:46 AM    Post subject:
Cataracts & Surgery
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So Nava's been diagnosed with large cataracts and we are faced with the choice of having the emoval surgery in Bangkok (approx 10,000$ plus after care and glasses/lens etc) or returning to the US and trying to get Medicare and get the surgery.
Drs say it is pretty urgent as they don't kow if she was born with them and they are worried her prolonged lack of vision will have longterm impact on brain development/processing of vision.

And just to make it complicated, we have tickets booked to the US on Sunday!

Need all and any advice! The key sticking points are:
1. Will we get Medicare based on DS diagnosis in CA or OR? (I've been rsearching and it seems the answer is yes via waivers but i'm not clear if they cover health care as well as early intervention--sorry if a stupid question!)
2. Would it take a long time to get the surgery assuming we got cover? (I know there will be some wait for processing regardless but I worry about it taking a long time after that even)

I'm scared that I'll cause her more harm screwing arond trying to get cover. Theoretically we could dig deep and pay for it here but I don't know we'd be able to keep paying as treatments plays out post-op and thats's scary.

Anyone on here had this surgery? I could really use some reassurance right now.
Sad

***Dr just called to say she tested positive for CVS and that's what they think caused it but I'm totally confused as I wasn't sick the whole pregnancy!

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momlorac
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PostPosted: September 03 2010, 9:24 AM    Post subject:
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Abigail had caterat sugery when she was 9 mos old. She did not have it when she was born because they checked at birth then at about 4 mos. When she went again to the eye dr at a little over 7 monthes they discovered it. Once we went to the dr that did the surgery they booked us into the 1st slot. They did one eye one day and the other the next. They put the lenns in then. The dr did say they want to fix babies eye soon. Are the putting in a lenns now or waiting. I did have to go to a lot of follow up visets. She still goes every 6 months to see the dr.When are you moving ?

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Carol mom to Adam 6/17/96 ,Emily 8/7/98, Abigail (DS)8/16/04
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lespring
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PostPosted: September 03 2010, 12:03 PM    Post subject:
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Ask Adrienne I think. I'll go get her.

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momofrussell
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PostPosted: September 03 2010, 12:33 PM    Post subject:
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Russell was born with bilateral cataracts....they were both removed (not at the same time) weeks after he was born...like at 6 and 8 weeks old. He did NOT have lens impants until he was 4 1/2.

Ok...before we begin...what is "having CVS while pregnant" mean? I have no clue what that is....don't know if that would cause any cataracts beyond just it being that when a child has DS they have around a 2% chance of being born with them. Smile

My opinion is yes it needs to get done but most doctors don't do the lens implants on babies so she will have the same lack of vision regardless. In fact, Momlorac, I am thrilled you had a doc that DID do that, it's actually not common from what I am told. So, basically what I am saying is yes, Russell had cloudy vision impeding his developement at birth but due to the lack of lenses until he was 4 1/2, he still had the same cloudy vision.

Russell was legally blind until he received the lens implants. Some children w/DS have doctors that NEVER recommend lens impants and still don't have them (glad that wasn't our case!). No matter where you get the surgery I would suggest you ask the doctor how many he/she does yearly and hope that there is enough capsule left to do the lens implants no matter if it's now or later. We have a very well known doctor in Long Beach, CA do our surgery and she doesn't do the lens impants at infant age. BUT, that was 12 yrs ago....maybe they have changed some of their rules of thought....

We almost didn't get the lens impants because we moved to Missouri and our first doc said he wouldn't do it. I TRULY believe our child need eyes to develop (DUH!) but they disagreed saying I was putting Russell at risk. Well, there is more of a risk for things like glaucoma without the lens impants then with them, so go for someone that understands your child needs the impants period.

I'd also be inclined to see if you could get the surgery done over here in the states. When we lived in CA, Russell was born there....we could have received medicaid based on the DS alone....I am pretty sure it's still like that but don't know for sure. All you can do is ask!!!

As far as brain developement, it did hinder Russell a bit but that was just part of the package with having cataracts at birth and no implants for 4 1/2 yrs. Russell developed Amblyopia in his left eye which means his brain had a hard time telling his eye what to do. He also has Nystagmus which was from the cataracts. They all tend to be a package deal from what all our eye docs have told us.

Where are you moving to? If you need help finding a doctor, I might be able to help...let me know...send me a private message if you need anymore info.

Hope this helped!

Adrienne

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momlorac
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PostPosted: September 03 2010, 5:36 PM    Post subject:
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They did tell me that we should do it as soon as posible. The found out she had them and they put a rush on it. One eye dr discovered it and we had to go to another dr to have the surgery and the gave me an apt to see the dr when a week or so. I though I was going to have to put lennes in myself but when I got there they said the do the implants. If ou are not moving for awhile I also would say get it done there.

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momofrussell
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PostPosted: September 03 2010, 10:50 PM    Post subject:
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I don't remember if there was any urgency but maybe there was I can't remember. They told us that yes they had to be removed but when Russell could handle the surgery. He was in NICU for 2 weeks. We had to get hi
home and able to handle the surgery.

Momlorac, we tried contacts for awhile at one point. My husband was responsible for putting them in. LOL I could never do them. I can do eye drops but not contact lenses. They didn't last long so Russell just wore glasses.

A.

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thaidyed
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Location: Laos

PostPosted: September 06 2010, 1:56 AM    Post subject:
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and I'm back. Sorry my last message was so unclear. Super tired and on a borrowed computer running for a taxi.

So. The infection she was diagnosed with is CMV (cytomegalovirus). They don't know if she got it via me or after. If via me during pregnancy it could be the cause of the cataracts and also mean retina damage and etc. However, its a very common virus and it's just as likely she picked it up last week and the cataracts are caused by something else.

As far as surgery: We can't get any read on the skill & experience level of Doc in Bangkok so we just don't feel confident doing it here (though, as it turns out, the hospital offered to discount fees like 30-40% so it's more affordable than previously thought).

Since we've already got tickets booked to the US next weekend, we've decided that we need to try and get it done there. We will apply for medicaid cover on the basis of DS (prefer to in OR but if she won't be covered there we will 'move' to CA). I'm scared that this might mean greater delay but I just don't feel confident with BKK docs.

My dad's been calling Docs and has been told basically most Doc still prefer to the just do glasses after, while some do contacts. The Doc in Bangkok said contacts are more difficult than glasses and that are better used for when only one eye has the problem (!?).

The part of me that wants Nava to be perfect wants me to search far and wide for someone to do the lens implant though. I am really upset to think that you do the surgery and the baby still can't see much. Nava is testing as developmentally "normal" for all her gross+fine motor stuff and I just wasn't ready to hear she may not ever really have vision (because by the time they implant her brain has changed from lack of sight...). I know I have to toughen up a bit but at 5 months...I'm just not ready.

Anyone have a magic wand to make this all go away?

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Downsyndrome Diva
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PostPosted: September 08 2010, 1:37 PM    Post subject:
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Hello!
My daughter was diagnosed with cataracts at 7 months old. Our doctor wanted to do a watch and wait approach. Her cataracts have always been on the large size but not in her line of vision. She is now 16 months old and I took her to Children's hospital in Denver Co to get a second opion. The doctor at Childrens said well they are about 3mm in size and that is the size that we reccommend removing them at. She didn't consider anything else other than cataract size. She also will not do a IOL implant at my daughters age. My original doctor feels comfortable doing implants at age 2 or close to that age. Sooo we have decided to wait and try and get her to 2 and have implants in. We tried getting her to wear glasses and that does not work!! I'm not going to do surgery to have her see better just to have not wear glasses and still see poorly. Also risks of glaucoma are higher the younger the child is. We have opted to wait and get implants. I like that our doctor listens to us and considers each child on an indivdual case. Good luck to you!!

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momofrussell
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PostPosted: September 08 2010, 9:59 PM    Post subject:
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In the states most doctors will prefer you try the contacts instead of glasses. Even if cataracts are in both eyes. We did contacts for awhile but it didn't work out well for us. It took some time but Russell kept his glasses on just fine after he realized what they were for. Smile

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thaidyed
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PostPosted: September 09 2010, 4:24 AM    Post subject:
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Thanks! All these responses really help.

We've got a Dr appointment for 8 days from now in the US - because according to the 1st Dr it is urgent. I'll sleep better after a 2nd opinion.

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ramsey_4278
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PostPosted: September 09 2010, 9:39 AM    Post subject:
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Ramsey was born with a cataract in his right eye which was removed when he was 4 months old. At about 19 months one was found on his left eye. The Dr. immediately took that one out. At this time Ramsey does not have implants but wears very thick glasses. I have no problem getting him to wear the glasses because he can't see with them. I think that his Dr. will start thinking about the implants when he is 3. his next appointment is in Nov. I already have several questions to ask her.
What is the best age to get the implants or does it matter?

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thaidyed
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Joined: 13 Apr 2010

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Location: Laos

PostPosted: September 09 2010, 9:09 PM    Post subject:
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Wow this is a steep learning curve but I feel I'm making progress. As a resource for the next family to get this news, I thought I'd post the resources that have helped me, briefly:

The yahoo "aphakic" group is a fantastic resource.
http://www.aapos.org/terms_faqs/ is a great way to learn what's what.
http://www.pgcfa.org/kb/ is a priceless fountain of knowledge!

We got a call back from OR disability office today, we've looked into other possible insurance if medical coverage is out and we've got a Dr appointment in OR in a week.

Deep breaths til then!

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