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#15737 - 06/21/04 06:22 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 - 06/22/04 12:50 AM 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).]
_________________________
Shauna Johnson
Independant Consultant
Cookie Lee Jewelry
"Choose a job that you LOVE and
you'll never WORK a day in your life!"

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#15739 - 06/22/04 09:42 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 05:13 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 02:07 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 10:18 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.
_________________________
"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 02:58 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 03:13 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 07:31 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 05:06 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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#15747 - 08/11/04 06:22 PM Re: Questions Regarding Ectropian
SusieL Offline
Member

Registered: 10/17/03
Posts: 51
Loc: Raleigh, NC
Good advice. Thank you all! I'm going to wait on it. I didn't know that about the tear ducts...

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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#28797 - 02/08/13 03:04 PM Re: Questions Regarding Ectropian [Re: SusieL]
Sagittarian2012 Offline
New member

Registered: 12/15/12
Posts: 3
Hi,

Notice it's been awhile since someone posted on this topic but I have to see an eye specialist next week. Went to an eye doctor about an infection and she noticed my bottom eyelid was starting to pull down. I'm a 44 year old male with LI and never really had problems with my eyes before although I knew this could become an issue someday. Just wanted to see if anybody out there has had work done on their eyes recently. Would like to avoid any work done on my eyes but I guess I'm just wondering at what point do I know that I can't avoid operations on my eyes.

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#28799 - 02/12/13 05:32 PM Re: Questions Regarding Ectropian [Re: SusieL]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Have you tried using a topical steroid on the lower eyelid? There's a medication called Tazorac that works similar to the oral retinoids but with significantly less side effects because there is only a small exposure point and has a very fast absorption rate, so it is completely out of the system within a day or two of use. (Oral steroids are still in your body for weeks, months, or sometimes years, depending on which one you use).
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#28800 - 02/14/13 01:47 PM Re: Questions Regarding Ectropian [Re: SusieL]
Sagittarian2012 Offline
New member

Registered: 12/15/12
Posts: 3
Thanks for the information. Dr. wanted me to start using lacrilube and ocupads and see him again in two months. Doesn't seem to think that any operations are needed at this point.

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#28813 - 02/20/13 10:24 PM Re: Questions Regarding Ectropian [Re: SusieL]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
You've gotten through 40 years without needing lacrilube? I assumed that was a given when I posted last.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#28836 - 03/02/13 02:27 PM Re: Questions Regarding Ectropian [Re: SusieL]
stc Offline
New member

Registered: 11/24/12
Posts: 3
Sag 2012,I didn't start having problems with my eyelids until I was about 45.I'm 54 now.I had ectropian repair (left eye}Jan 2008.It didn't work all the well,The Dr said it was retracting.Had surgery done again.This time the Dr added too much skin.so I have a bag under my eye.The right eye was getting worse.Since that time I have been massaging upwards with Lotemax,or FML ointment.I do this at night before bed.Right before I lay down at night,and after a shower,I use aquaphor around both eyes.That keeps them moist.I try not to sleep with my eyes hitting the pillow.

As far as tearing goes.I clean my eyes(morning mucus)with a cheap eye drop.Then I use a good lubricting eye drop,right before I leave the house.That seems to help with the watering eyes.

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#28963 - 07/09/13 01:26 PM Re: Questions Regarding Ectropian [Re: Sagittarian2012]
Lisa Scott Offline
New member

Registered: 07/09/13
Posts: 1
Loc: N. Carolina
I signed on to this website after many years not checking in. My reason is because of corneal ulcers & eye infections due to my ectropia. I need to see if this is a problem faced by many or is it just wierd me. This is my second bout of infections and I'm very close to a ruptured cornea because of the thining caused by the ulcers. Is anyone else experiencing this issue? I have had approximately 10 eyelid surgeries with mixed results since the age of 6 and I'm now 58. I've purchased enough Genteel that I should have stock in the company and I swear by my moisture chamber goggles for nighttime. Is anyone else doing anything special to prevent dry eye and the resulting corneal damage?

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#28966 - 07/14/13 10:52 AM Re: Questions Regarding Ectropian [Re: SusieL]
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Lisa
I dont have lamellar ichthyosis, but some of my friends use Lacrilube and a product called Tears Away. You might like to contact our FIRST foundation (info@firstskinfoundation.org) for a product list for your ectropion and to be connected to those affected with ectropion. I hope this helps.
Les
_________________________
Les Avakian

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#28995 - 08/11/13 08:19 PM Re: Questions Regarding Ectropian [Re: SusieL]
Kanga Offline
Member

Registered: 12/01/11
Posts: 11
Loc: Queensland, Australia
G'day Lisa,

I am 35 and could tell a similar story to yours having had several surgeries myself. One newish product that I have come to depend on is "Tears Again", which is an eye spray that helps to keep the eyes moist.

Good luck with your eyes!
_________________________
Kanga
(Jeffrey Gridley - Lamellar Ichthyosis)

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