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#15737 - 06/21/04 05:22 PM Questions Regarding Ectropian
SusieL Offline
Member

Registered: 10/17/03
Posts: 51
Loc: Raleigh, NC
Hello, everyone! First of all I want to say Woo-Hoo! We moved from Phoenix, AZ to Pasadena, CA less than one week ago and I already see a difference in my son's skin (LI.) He is still moist (compared to Phoenix anyway) by the end of the day and I have gone down to one bath a day and a couple of lotion applications throughout the day. It's wonderful to see him so much softer. I'm sure he's more comfortable now.

Anyway, on to my questions... he is 10 months old now, and has slight ectropian. Sometimes it's totally unnoticeable. Other times you see a little sagginess in the lower eyelid. His eyes water almost all the time. People are always asking me if he's been crying. They seem to notice his eyes before his skin even. Weird. Anyway, his doctor back home said he could be a candidate for eyelid surgery (I guess they put a stich or two in the eyelids to bring them together a bit and pull it tighter against the eye?) but he didn't see it necessary until Andrej is in school and really only if the watering is an issue for him.

My concerns are first of all, does it get better or worse with age in general, or does it pretty much stay the same? Also, I've been reading the posts on ectropian and I'm concerned if I let it go until then, he may already have some damage. Is it best just to do it and avoid him potentially losing vision quality and suffering abraisions, etc?

Just wondering what everyone thought. I want to do what's best for him, especially in the long run.

Thank you all for your advice. If there is anyone near Pasadena, I'd love to connect. I have never met anyone else with ichthyosis, and I don't think we'll be able to make it to the conference this year. [img]http://www.ichthyosis.com/ubb/frown.gif[/img]

Thanks!
Susie
_________________________
Susie

Daughter, Emma born 9/2001 -unaffected
Son, Andrej born 8/2003 - has Lamellar Ichthyosis
Daughter, Tori born 3/2006 - has Lamellar Ichthyosis

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#15738 - 06/21/04 11:50 PM Re: Questions Regarding Ectropian
ShaunaJ Offline
Member

Registered: 07/29/03
Posts: 233
Loc: Ogden,Utah
Ryley's eyes have gotten a little bit better, but hers were realy bad when she was born she is now 6. Now we keep sunglasses on her eyes during the summers and put drops in twice a day (GenTeal). At night we put GenTeal Ointment it is thicker so it keeps them moist through the night. Her eyes have had a few abrasions but no problems with her corneas. She seems to do pretty good and doesn't water a whole lot except when she doesn't wear her sunglasses outside and she has been out for a long period of time. If her eyes did get worse I would probebly have the surgery done, but I have heard that sometimes it goes right back to the ectropian. I know there are a few people on the board that have had it done so they might be able to tell you more. Best wishes!

Shauna

[This message has been edited by ShaunaJ (edited June 22, 2004).]
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Shauna Johnson
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Cookie Lee Jewelry
"Choose a job that you LOVE and
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#15739 - 06/22/04 08:42 AM Re: Questions Regarding Ectropian
Anonymous
Unregistered


Suzie,
I'm sorry I can't help you being that I don't have the same type of Ichthyosis. However, I do live about 20 miles from you now in the south bay area. I'd be more then happy to meet if you'd like. Send me an email after you get settled in and we can arrange something.
Keith.

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#15740 - 06/24/04 04:13 PM Re: Questions Regarding Ectropian
Annamarie Offline
Member

Registered: 07/22/03
Posts: 64
Loc: La Mesa, CA.
Hi Susie,
My son who has HI has had problems with his eyes since he was born. Through the years this was treated with eye drops and eye ointments plus always a humidifier in his room. The ectropian did not get better and eventually I think around 12 years or so he began having surgery on his eyelids. The surgery was because his corneas were drying out and he had scarring on them. He tolerated all the surgeries well, and the last surgeon decided to just put a couple of stitches at the very end of his eyelids to pull the eyelids down more, making them close better.

I wouldn't consider these surgeries yet since we're talking about a baby, but please be religious about doing the drops and ointments. Also get a good humidifier.

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#15741 - 07/28/04 01:07 PM Re: Questions Regarding Ectropian
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Susie,

I'm sure your ophthalmologist already told you that eyes tear when they are too dry (I know that's kind of counter-intuitive, but constant tearing is frequently a sign that the eye is too dry--almost certainly the case for someone with ectropian).

Keeping a nighttime lubricant in my eyes EVERY NIGHT is the key to my eyes -- both the keep the corneas from drying, keep me from tearing during the day, and just looking and feeling better. That nighttime lube is something I absolutely couldn't live without.

You didn't mention whether you were already using a nighttime lube all the time. But I'll second AnnaMarie and strongly encourage that.

I've not needed surgery (and as you've probably seen from other posts of mine, the doctors I've spoken with have actually discouraged me from going that route), so I'll leave it to other people to speak about that.

Laura

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#15742 - 07/29/04 09:18 AM Re: Questions Regarding Ectropian
Beth Engerman Offline
Member

Registered: 08/23/00
Posts: 106
Loc: Indianapolis, IN USA
I have LI and I have the same problem as your son. My eyes water constantly. My eyes have gotten better (less noticable ectropian) as I have gotten older, but the water doesn't stop. Like Laura I have been discouraged from having surgery. I think that it has something to do with the fact that my ectropian isn't that bad and that my eyes water all the time which keeps them moist.

I would have to agree that it is important to put lubricant in the eyes everynight. Also, make sure to teach him not to rub his eyes with his hands, wrist, arms, sleeves, ect.... this is a lesson that I have still not learned and I get little white head infection on my eye lids that sometimes can be very painful. So, just always have a tissues with you and then it will become a habit for him.

His only problem when he gets older might be that people will think he is actually crying during the sad parts of movies when really he just has watery eyes.
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"Our greatest fear is not that we are inadequte; but that we are powerful beyond all measure." Nelson Mandela

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#15743 - 07/30/04 01:58 AM Re: Questions Regarding Ectropian
Bare Carmen Offline
Member

Registered: 07/14/04
Posts: 56
Loc: Australia, Brisbane
Hi! My little boy had the samething when he was little, when he was asleep his eyes would turn out. It did not look good. I took a picture of it one day when he was sleeping so the doctor could see what I was talking about. He said that the only way to fix ectropian was eyelid surgery, I did all my study on the topic and decided that I would rather not have him go through that. So I turned to the bible and found out what God had to say about healing. We prayed about it and from that day on it has never ever done it again. The bible has way more good news than the doctors and God works. Amen.
Carmen

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#15744 - 07/30/04 02:13 AM Re: Questions Regarding Ectropian
SusieL Offline
Member

Registered: 10/17/03
Posts: 51
Loc: Raleigh, NC
Praise God, Carmen! That is wonderful news! If there is one thing I have learned through this experience is that He does answer prayers...

Here's to praying for a cure!
Susie
_________________________
Susie

Daughter, Emma born 9/2001 -unaffected
Son, Andrej born 8/2003 - has Lamellar Ichthyosis
Daughter, Tori born 3/2006 - has Lamellar Ichthyosis

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#15745 - 08/04/04 06:31 AM Re: Questions Regarding Ectropian
Bare Carmen Offline
Member

Registered: 07/14/04
Posts: 56
Loc: Australia, Brisbane
Dear Susie,
All I can say to that is Amen, Amen and Amen.
In Jesus Name Amen again.
Carmen

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#15746 - 08/04/04 04:06 PM Re: Questions Regarding Ectropian
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Susie,

I strongly reccomend you avoid surgery for your son unless it becomes absolutley necessary. I have had several discussions with both plastic surgeons and eye surgeons. Right now your child's tear ducts work fine and his eyes are able to stay most. If you have to help out a little with drops or whatever, still, that's fine. If the surgery is done there is a risk that his tear ducts will no longer work properly and that is a nightmare.

The surgery is also not a permanent fix. His eyelids could continue to retract even after surgery. There is a young girl whose mother Becky posts on the board and her daughter has had to have the surgery more than once now due to continued retraction. The majority of us who have ectropian have had it stabilize by the time we became adults so hopefully the same will be true for your son. Oh, and yes, my ectropian has gotten better with age.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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