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#23668 - 01/13/09 08:08 PM Collodion Babies with NO Ectropion & No Eclabium
KyliesMommmy Offline
Member

Registered: 01/12/09
Posts: 29
Loc: NY
Hi,

I am New to this site. My daughter was born in August 2008 as a collodion baby. She has since had a skin biopsy and we are patiently awaiting the results of the gentics testing. So far the doctor's have said they are leaning towards lamellar.

I am wondering if anyone else experienced a collodion baby without the presence of ectropian and eclabium as my daughter did not have these conditions. So far I am unable to find anyone who has not had that with the collodion membrane.

Thanks so much!


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#23717 - 01/20/09 01:21 AM Re: Collodion Babies with NO Ectropion & No Eclabium [Re: KyliesMommmy]
anaronni215 Offline
Member

Registered: 10/13/08
Posts: 37
Loc: Rhode Island, USA
My daughter Ana was born in 2002 as a collodion baby. She has an extremely mild case the doctors say. She was diagnosed with CIE just by the doctor looking at her skin. She has never had any type of tests done. She is now going to be 7 years old. Noone can tell most of the time that she even has a skin disorder. The only time anyone really can tell is when she gets warm. She gets extremely red in the face. She shed her membrane within 10 days when she was born. Luckily she has done extremely well. Everyother day we apply cethaphil to her intire body after showering or just eucerin.
_________________________
My name is Julie and I am the proud mom of 2 CIE children born with a collodion membrane. My Ana is 13 , GIovanni is 6 and I have a uneffected daughter Francesca who is 18 months old

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#23718 - 01/20/09 01:23 AM Re: Collodion Babies with NO Ectropion & No Eclabium [Re: anaronni215]
anaronni215 Offline
Member

Registered: 10/13/08
Posts: 37
Loc: Rhode Island, USA
My name is Julie. I live in Rhode Island which is not that far from you. If you want to talk I am on yahoo messenger. anaronni07@yahoo.com. Please don't be afraid to IM me if u want to chat!!!
_________________________
My name is Julie and I am the proud mom of 2 CIE children born with a collodion membrane. My Ana is 13 , GIovanni is 6 and I have a uneffected daughter Francesca who is 18 months old

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#23724 - 01/21/09 05:37 PM Re: Collodion Babies with NO Ectropion & No Eclabium [Re: KyliesMommmy]
aylasmom Offline
Member

Registered: 05/29/06
Posts: 215
Loc: Waterford ,MI
my daughter was born May 2006 with collodion membrane. She also did not have ectropion or eclabium. She was diagnosed through Gene DX with CIE. She has a mild to moderate case. If you have any other questions, or would like to see a pic of her, please email me. Congrats on your new little one- Dawnn

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#23878 - 02/20/09 09:34 PM Re: Collodion Babies with NO Ectropion & No Eclabium [Re: aylasmom]
nikol62 Offline
New member

Registered: 09/21/07
Posts: 4
Loc: Chicago, IL USA
My son was born in August 2006 as a collodion baby without eclabium or ectropion. Doctors diagnosed him with non bullous CIE just by looking at him after the membrane was gone. We have a mild case.


Edited by nikol62 (02/20/09 09:36 PM)
Edit Reason: misspelling

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#23917 - 03/02/09 12:26 AM Re: Collodion Babies with NO Ectropion & No Eclabium [Re: KyliesMommmy]
LaurieAnn Offline
Member

Registered: 08/27/08
Posts: 12
Loc: Wynnewood, PA USA
Hi! Congratulations on your baby-my daughter was also born in August 2008 (august 16th)-she is my fourth child and second with ICH (they both have CIE). both were collodian babies with a very thick membrane. my son did not appear to have ectropion eyes, but my daughter does. over time, my son is now three, i have seen that his eyes do look affected-i do not know if his condition is worsening over time or not, but am going to have them start being followed more closely for it. i wonder if anyone else has noticed a worsening around the eyes over time?

best wishes to you and your new baby!
_________________________
I have no greater joy than to hear that my children are walking in the truth. 3 John 1:4 (NIV)

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#24265 - 04/28/09 02:03 AM Re: Collodion Babies with NO Ectropion & No Eclabium [Re: LaurieAnn]
Tania Offline
Member

Registered: 04/28/09
Posts: 5
Loc: Melbourne, Australia
Hi
my daughter was born last year with a collodion skin and has been diagnosed (without genetic testing) with CIE. She seems to have a mild form as apart from her hands and feet it is difficult to tell that she had dry scaly skin. She also goes red in the face when she is hot so we have to be careful in very hot weather. We use dermeze 4 x / day (vaseline-based) and have just now got a new cream to replace one dermeze a day, which has some lactic acid to help with exfoliating.
We are Australian and live in Melbourne and there are no icthyosis groups or the like here for support as our population and amount of collodion babies born is so remote. So it was good to come across this forum.
I take my daughter swimming once a week - what do you do with her skin afterwards. Currently I rub her skin with QV bath oil afterwards and then shower her off and then moisturise. Do I need to use QV bath oil or could I omit that step and just shower her and then moisturise. I thought that the oil can help get rid of the chlorine? What do you guys do?
I have to say, though, i feel extemely lucky as there are worse things to have than mild CIE (both my husband and I had no idea we had the recessive genes so it was a huge shock) and our daughter is beautiful and laughing and funny and the best thing in the world.

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#24266 - 04/28/09 07:53 AM Re: Collodion Babies with NO Ectropion & No Eclabium [Re: Tania]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Hi Tania, we're in sydney!! I know what you mean about having no local support groups frown We have only taken Brandyn swimming in a pool once and at first it didn't seem to have too much of an affect on his skin but within 24 hours we could tell the difference. We use QV bath oil in the bath but I never thought about rubbing it directly on his skin, I may try that.

Welcome to the board smile
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

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#24279 - 04/28/09 07:15 PM Re: Collodion Babies with NO Ectropion & No Eclabium [Re: brandynsmum]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
Hi and welcome Tania
Our daughter (2 yrs old) also has probable CIE. After swimming we simply shower her off and rub her down. We used to grease her up first but found that this didn't add any benefit but by just showering and rubbing we can get the build off off much easier. Then we lather her creams on until bath time when we follow her normal routine.

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#24281 - 04/28/09 11:15 PM Re: Collodion Babies with NO Ectropion & No Eclabium [Re: BritMum]
Tania Offline
Member

Registered: 04/28/09
Posts: 5
Loc: Melbourne, Australia
Hi again
thank you for your responses.
it is interesting to find someone in Australia that has a collodion baby as research suggests that they are so rare. My GP suggested the bath oil or a sorbolene cream to try and get the chlorine out of her skin after a swim. So far it seems ok. We started out using QV bath oil in her nightime bath but after she developed eczema (food allergy related) we got hamilton bath salts, which actually seem much better for her skin now. She does not have that much skin build up, it seems to be ok with daily baths so far, except her head is getting a bit trickier as her hair grows beceause we moisterise it less now.
cheers
my daughter was born on 16 April 2008.

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#24757 - 07/13/09 12:32 AM Re: Collodion Babies with NO Ectropion & No Eclabium [Re: Tania]
Shae Offline
Member

Registered: 07/13/09
Posts: 6
Loc: Melbourne
Hello Im Shae,
My boyfriend has a child who is 7 with lamellar Ichthyosis was also born a collodian baby and we are also from melbourne.. there is a clinic at the royal childrens hospital on the 27th of this month i think its only every 9 months or so.. call them up for more information im pretty sure you have to be booked in

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#24758 - 07/13/09 12:37 AM Re: Collodion Babies with NO Ectropion & No Eclabium [Re: Tania]
Shae Offline
Member

Registered: 07/13/09
Posts: 6
Loc: Melbourne
Tania im from melbourne also id like u to add me on msn tofargone18@hotmail.com thanks

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#24765 - 07/14/09 11:48 PM Re: Collodion Babies with NO Ectropion & No Eclabium [Re: Shae]
Tania Offline
Member

Registered: 04/28/09
Posts: 5
Loc: Melbourne, Australia
Hi Shae - I am not sure how to use msn - but you can email me on edwinandtania@aol.com - cheers

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#24768 - 07/16/09 01:43 AM Re: Collodion Babies with NO Ectropion & No Eclabium [Re: Tania]
Shae Offline
Member

Registered: 07/13/09
Posts: 6
Loc: Melbourne
Hi if anyone could help me im 20yr old from melbourne my boyfriend has a child to a previous relationship who has Lamellar ichthyosis im 5 and a half months preg whats the chance of it happening to me.. is anyone in my situaton please add me tofargone18@hotmail.com or anyone with information that could help me

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