wrblack

[momofrussell]

no need to take it off board, info on cataracts might be helpful to someone else here. We'll just move it to it's own thread! I enjoy your sense of humor... kind of demented like mine LOL Kicked off for being rowdy? The heck you say!

Thanks for the clarification. So you know a handful of children w/DS and congenital cataracts and plenty more children, "typical" for lack of a better term, that have cataracts also, through that group? Just so I understand.

Charlie was premature? But had his cataract removal surgery shortly after birth? I am glad at least Charlie has his implant in one eye... that is better than none in my book.

Russell had both removed shortly after birth also. He didn't get his lens implants until he was 4 1/2 and after we had moved from CA and left our WONDERFUL Ped Eye doc. It was a battle to say the least. We were refered to the first doc we met in St Louis and he didn't think Russell should have the surgery. I then called our old doc who said the same thing. See, with Russell, he has amblyopia (Does Charlie?), strabismus and the BIG kicker, a nasty case of Nystagmus. His left pupil was pulled up and elongated since birth until he was 2 1/2 so he had to have corrective surgery for that too. So, after our old doc assuring us that when Russell was around 4-5 yrs old she retracted saying it wouldn't do Russell a bit of good.

That was baffling. Didn't she think that Russell would develop better with "eyes" then without eyes and she said NO... she didn't think it would benefit him and the risks were greater. Our doc in St Louis agreed. I disagreed and was very mad that we were led to believe otherwise. Our first doc in STL had a preconcieved idea about it all, and bad bedside manner and an attitude to boot, so this mommy didn't take to kindly to all of that and I dismissed hiim after he performed and EUA while we were still in the hospital. He tried to dismiss me and go to my husband, but, heck, doesn't he know we stick together like glue? LOL

I then turned to another doc at the St Louis Children's Hosp (not where the first doc was at) to a doc who perfoms the lens implants quite often. The first doc was not known to do so which I learned later. So it was good the first doc didn't do the implants. Our new doc is WONDERFUL and DOES believe in the developement of our children (our meaning DS) and strongly believed the development of Russell far outweighed the risks. We agree and Russell now is psuedoaphakic. It took Russell a good year or more to realize his eyes were there and what they were for LOL.

He still has other eye issues, the amplyopia and nystagmus. And until Russell is a bit older AND can talk/communicate (Russell doens't talk and communication is the pulling of a hand) we will not know how bad the nystagmus is effecting his eyes. He squints to find his null point and doesn't use his left eye that much because of the pupil issues in the past. I know some people with Nystagmus function ok and others are considered legally blind. We just work with him at school so he can get the best possible until we know otherwise.

I am sorry to read that Charlie has glaucoma in his one eye. That was a big risk without the lenses for Russell. I will knock on wood with ya for Charlie.

Thanks for sharing all about Charlie. Other than Radonna who use to post here about her son Kaden, I have never met anyone who's child was born w/DS AND cataracts in both eyes So, nice to finally talk to another parent! I wish Radonna were still here! Even though her son was a bit older, they were two peas in a pod and we had a lot in common with our boys that we didn't with other parents sometimes.

So.. nice to finally meet ya!

A.

[wrblack]

OK, a little more clarification. Have learned of a couple of kids with Ds and congenital cataracts through the APHAKIC group. Know of several more, just stumbled onto another one a couple of months ago, from the Down-syn list (http://listserv.nodak.edu/archives/down-syn.html). Mathew, that latest kid, was in LA, is bilateral pseudophakic, and his mom loved their PO (pediatric ophthalmologist) a Dr. Wright.
So, let's see, there's Brian, and Skyler, and Hannah, and Rose Something or Something Rose, a Kevin I think, Will (sorta, only needed one eye done and not until he was about 9), Zack (a unilateral at about 6 mos.), think there's a couple more I'd have to dig through really old email to find, now Mathew, your Russell, your erstwhile friend's Kaden, and of course my Charlie. Makes about a baker's dozen I think.
We patched Charlie, sometimes more sometimes less, for his first 4 years. He was self-patching somewhat with the cataract in his right eye. PO has told us we don't have to patch anymore, just now, for the time being. Also Charlie's strabismus and nystagmus appear to have improved considerably. Believe Dr. O. thought he'd wind up doing strabismus surgery, but think maybe now he's changed his mind. And Charlie's nystagmus has dampened lots.
I never joined the nystagmus group, but there is one at
www.nystagmus.org/links.html
And they seem to offer a choice of message boards:
www.nystagmus.org/discus/messages/board-topics.html
There has also been some progress in developing a surgical treatment for both congenital and acquired nystagmus. See one article at
www.uhhs.com/Article_Detail.aspx?ID=171&MID=152
Sounds like you pretend to do the muscle surgery for strabismus but just sew the muscles back where they were, and it works 9 times out of 10.
Something you might be interested in investigating. I hope I won't get that interested.
Oh, I also know of a little guy with Ds and congenital glaucoma instead of congenital cataracts. Of course is at risk for cataracts, but I hope he skips that complication, wish Charlie had skipped the glaucoma complication.
Charlie's right eye has always been stronger than his left. He had been very good about patching and contact lens. We went about 2 years before losing our first lens. Pretty amazing in my circle of acquaintances. That kid Brian got switched to glasses instead of contacts because at about a year old he developed a taste, literally, for those $200 a piece Silsofts. His mom would love for him to get IOL's, I think, but he's got worrisomely high IOP's (intraocular pressure). Charlie has disappeared two lenses in the last 10 days, first his almost brand new +11.5 Silsoft, then one of his 2 old backup +12 lenses. I'm waiting for a new +11.5 to get shipped to us. So I've been crawling around on the floor more lately than I used to and we've been a bit better about checking his eye for a lens lately than we usually are.
Oooh, would you like my wife Lynn's email? She tried once to do the lens business but, to my mind, all too quickly and easily decided that was a daddy job. I used to chuckle to myself, and wonder where I had gone wrong, reading all the moms on APHAKIC complaining about their husbands being totally worthless at lens removal and insertion.
Very nice to meet you too. Thanks for starting a new thread, though you could have used something like congenital cataracts as the subject. And I'd be delighted to meet your friend Radonna, if she chose to turn up.
Cheers,
Bob

[momofrussell]

Well, I am glad there are a handful out there! It was rough a few years back not knowing anyone until I did meet Radonna.

Russell wore glasses after the surgeries then we switched to contact lenses. I am NOT an eye person, I think eyes are quite gross on the whole, so it was left up to my husband to do the duty. Russell finally got wise to us and fought so much we went back to glasses. Our doc in CA was out of Long Beach, south of LA. Dr. Jotterand. I don't know what we'd do without her!

We also patched Russell for a bit but that too ended up being torture. After they repaired the left pupil (they basically made him a new one) we had to patch for a while. We also patched a bit after moving to STL. I am not into toturing my child on a daily basis, the docs agreed and we stopped. Russell has had strabismus surgery. I am also very aware on the Nystagmus surgery but Russell has had enough done, we don't feel it's neccessary. Also, there are only a few docs, one in San Diego in particular that feel they CAN correct the Nystagmus, most docs don't feel it can totally be repaired.... who knows. It depends on how good your doc is. Our doc is very good but still doesn't think the Nystagmus surgery works. I have a friend in San Diego who has seen the doc that does the surgery and has emailed me in the past about it. Her son doesn't have cataracts but has Nystagmus. I don't remember if Jakey has had the surgery or not.

I am glad Charlie's Nystagmus has subsided some. The Nystagmus is what gives Russell most of the challenge in learning right now.

Likewise, nice to meet you and learn about Charlie! Oh, and if you wanted a different heading, you could have added the "cataract" part in the subject line LOL We are all nosey here though and we will all read no matter what the subject is, even if it's addressed to someone else! heehee

A.

[wrblack]

Well, duh!! Don't know how many times I'd read your signature line before thinking of mentioning one more thing, namely autism. That's another Yahoo group, groups.yahoo.com/group/ds-autism/ , which, sorry, don't belong and don't want to belong. But I think I know a couple of the active members, or maybe one very active member and the group owner. But maybe you already know all about that group.
But one last note, Lynn and I work in the same place as the role model for the movie Rainman. My reaction to that movie was probably quite different than most folks'. I walked out saying, Wow, that Dustin Hoffman can really do a great imitation of my friend Pete.

[momofrussell]

I did belong to that group back when Russell was first DX'd. Lots of people and rules. I felt as though I got lost amongst the shuffle LOL ...and I am use to the groups I go to. Thanks for the link though.

Does your wife ever post in here too? I am really glad we do have some dads that do post. My husband lives vicariously through me in regards to the online support groups I attend

A.

[wrblack]

<<Does your wife ever post in here too?>>

Lynn and I have both been on the Down-syn listserv for the past several years. Lately she has posted a few times to a couple of Baby Center bulletin boards, the Oct. 2003 birth club (for Robert, though he was born in July) and their Down syndrome board (very, very sad lately, lost a baby girl to complications of trying to repair heart defect, Tetralogy of Fallot).
I persuaded Lynn to subscribe to the digest form of that aphakic group. I nudge her every once in a while with something from Uno Mas, but she hasn't taken the bait yet.

[updowns]

Bob, just wanted to say I enjoy reading your posts, all very informative and I love your quirky sense of humour. Checked out Charlie's web page - he is adorable.

Stella