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#26672 - 07/24/10 04:07 AM Droopy Eyelids with XLI
Mom2boys Offline
New member

Registered: 07/23/10
Posts: 4
Loc: BC, Canada
I'm just wondering if anyone else has children with droopy eyelids with Ichthyosis? My 8 month old son (XLI) doesn't open his eyes more than halfway and he gets upset when you cover the right one, but doesn't seem to care if you cover the right one. He is tracking just fine, but we noticed something was different b/c he rarely looks directly at your face, like normal babies do. We had an optometrist screen him the other day and she said we should get our ped to refer us to a pediatric opthamologist to possibly do surgery to lift his lids (particularly the left). Just wondering if this is another part of his XLI or something else entirely.
Mom to:
Gabriel (unaffected - 11/13/05)
Raphael (XLI - 11/15/09)

#26675 - 07/24/10 11:47 AM Re: Droopy Eyelids with XLI [Re: Mom2boys]
jrmiss86 Offline

Registered: 06/07/05
Posts: 378
Loc: Marlton, NJ, USA
When we had Alex at his 6 month eye check-up (we have bad vision in our family, so we see eye dr.'s quite often) She told me that with xli and the eyes what you needed to worry about was scales on the eye, or something to that affect (Alex is now 5 1/2 so I don't remember exactly what she said) I don't remember them saying anything about a drooping eyelid. So I don't know if it is related or not. My guess is that it is unrelated, but you never know.
Mom to:
Alex (xli and Kallmans - 2/3/05)
Liz (3/16/07)

#26683 - 07/26/10 01:44 AM Re: Droopy Eyelids with XLI [Re: jrmiss86]
MomofPrincesses Offline

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
My daughter has LI and we have the opposite problem, her eyelids are sometimes too tight and won't close. I hope you are able to get some answers!
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

#26709 - 07/30/10 03:20 AM Re: Droopy Eyelids with XLI [Re: MomofPrincesses]
MonkeyMama Offline

Registered: 04/17/10
Posts: 44
Loc: Georgia
My two year old daughter has LI and she has had two surgeries so far to correct her drooping right eyelid. She was diagnosed at 4 months with a condition called ptosis. This is the result of ill-formed muscles that hold the eyelid open. In her surgeries, the ped. opthamologist used rubber tubing to connect her eyelid to the muscle that lifts your eyebrows and that is the muscle that now opens and closes her eyelid.

I know that sounds really involved and scary, but it's really not that bad and if you look at her now, you can't even tell she's had surgery. We've been warned that it doesn't necessarily last forever and she will likely have at least one, if not more surgeries to continue to replace it, but it's old hat to us at this point, so I'm not concerned. Our opthamologist generally waits until the child is 4 or 5 to do the surgery, but Cate's eyelid was drooping enough that it was obstructing her view and he was afraid she wouldn't develop properly since she couldn't see properly, so they did it early.

I hope this makes sense! If it is ptosis, don't worry - it's definitely fixable, sometimes doesn't even need to be fixed, and truly not a big deal in the grand scheme of things. smile

Hang in there!
Mama to Cate (1/30/08), our little monkey.
Collodian Baby/Lamellar Ichthyosis


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