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#25934 - 02/27/10 02:21 AM anyone have CIE without being collodion baby?
kekonen Offline
Member

Registered: 12/14/09
Posts: 58
My 7 month old was diagnosed with Ich a few months ago. At birth she just had really dry skin, no collodion membrane. Our dermatologist did a skin biopsy last week to see if my daughter has Ich Vulgaris, but the test confirmed that she doesn't. We're not planning on doing any genetic testing anytime in the near future, but we would eventually like to know what we're dealing with as we would like to have more children. The derm doesn't really think that my daughter has CIE since she wasn't born with a collodion membrane.

Has anyone been diagnosed with CIE that also didn't have a collodion membrane at birth?
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Karen
Mom to Annalie born 7/17/09 (Mild Lamellar) & Hadley born 3/20/06

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#25935 - 02/27/10 09:49 AM Re: anyone have CIE without being collodion baby? [Re: kekonen]
scotsmum Offline
Member

Registered: 08/25/07
Posts: 88
Loc: scotland, uk
Hi, my son has been diagnosed as probably having CIE and was not collodian, they haven't done testing but derms said CIE was most likely. Also, reading about others with definite CIE diagnosis, my sons seems to be almost exact same. He was very dry from birth and quite red, almost sunburnt looking but no collodian. I cant remember where i read it but i have definitely read somewhere that most people with CIE or lammellar will have been collodian, but not all. I think there are others also on the site

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#25936 - 02/28/10 06:30 AM Re: anyone have CIE without being collodion baby? [Re: kekonen]
Promiseland Offline
Member

Registered: 07/30/08
Posts: 160
There is probably no way around genetic testing, and it should be done as soon as possible. It may not even ich at all, let us hope.

Confirmation that it is not vulgaris is both good and bad. It is good that it is not the most prevalent form of ich, and therefore it may not be ich at all. It is bad because if it is ich it would be one of the rarer but more severe kinds.

Biggest concern is the impairment of cooling function of the skin, sweating. With vulgaris and even severe vulgaris, there is still an underlying ability to sweat. However, with lamellar or CIE, even minimal sweating becomes very difficult. If the child is unable to sweat, keeping the child cool and comfortable becomes the highest concern.

For the sake of caring for your daughter as much as the decision to have more children, you should get genetic testing done as soon as possible. And if it is a particular type of ich, then contact F.I.R.S.T

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#25938 - 02/28/10 07:17 PM Re: anyone have CIE without being collodion baby? [Re: Promiseland]
KimNL Offline
Member

Registered: 07/31/08
Posts: 146
Loc: Holyrood, NL, Canada
Casey has no collodian membrane at birth. We have had the genetic testing done and she has been confirmed as having a mutated ICHTHYIN gene which can lead to CIE or Lamellar. She has characteristics of both, though more similar to CIE.
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Kim
Mom to Casey born Feb 17/08(?LI/CIE), Sara born Feb 18/06, and Kaitlyn born July 2/03
Casey has been tested positive for a genetic mutation in the ICHTHYIN gene (which is indicative of either LI or CIE)


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#25939 - 03/01/10 04:41 AM Re: anyone have CIE without being collodion baby? [Re: KimNL]
kekonen Offline
Member

Registered: 12/14/09
Posts: 58
Thanks for the replies. It's good to know that it's possible to have CIE without the collodion membrane.

We plan on doing genetic testing as soon as we can afford it. Hopefully we'll get more answers with testing.

As far a sweating goes, we've noticed that Annalie will only sweat on her face. Her cheeks turn bright red when she is hot, and little beads of sweat will accumulate on the top of her nose and sometimes on her upper lip. The rest of her body is always dry.
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Karen
Mom to Annalie born 7/17/09 (Mild Lamellar) & Hadley born 3/20/06

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#25940 - 03/01/10 06:06 PM Re: anyone have CIE without being collodion baby? [Re: kekonen]
NARE1226 Offline
Member

Registered: 01/16/10
Posts: 13
Loc: York, PA
Our insurance covered Evan's genetic testing - so if you have insurance they may cover it. I had our derm confirm that insurance would cover it before they did it, so perhaps you could do the same thing so there aren't any surprises!

Although with Evan it doesn't change his treatment it is good to have confirmation of his diagnosis.
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Mommy of Evan, born 12/26/2008 with Collodian, diagnosed with Lamellar Ichthyosis.
Evan has three brothers, Nathan (16 yrs.), Austin (13 yrs.) and Ryan (4 yrs.) all unaffected.

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#25943 - 03/01/10 08:53 PM Re: anyone have CIE without being collodion baby? [Re: kekonen]
Promiseland Offline
Member

Registered: 07/30/08
Posts: 160
The difficulty with sweating, and sweating on very limited parts of the body are good indications that the condition may be CIE or Lamellar.

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#25951 - 03/05/10 06:47 PM Re: anyone have CIE without being collodion baby? [Re: Promiseland]
sony83 Offline
Member

Registered: 10/17/09
Posts: 11
Loc: delhi
hi there, i am sonia ,20 yo and had a skin biopsy at the age of 1.. whose result was non bullous -cogenital ichthyosiform erithroderma ..i have dry and red skin and no sweating except for face ..
my skin is extremely sensitive to heat .. if you want any other details , then you can anytime mail me at
sethsonia8@gmail.com .
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SONIA-20 yo girl having ichthyosiform erithroderma(non bullous)

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#25959 - 03/06/10 03:44 AM Re: anyone have CIE without being collodion baby? [Re: sony83]
Promiseland Offline
Member

Registered: 07/30/08
Posts: 160
Sonia,

"Heat intolerance" is something that people with ich have to deal with. I understand that those who have great difficulty sweating seeks to avoid it at all cost. But others with ich who could sweat but need hot weather to do so seeks out tropical weather. Hope where you live is relatively cool.

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#25969 - 03/08/10 12:19 PM Re: anyone have CIE without being collodion baby? [Re: Promiseland]
sony83 Offline
Member

Registered: 10/17/09
Posts: 11
Loc: delhi
Unfortunately , i live in north of India ...a place where summers are for 10 months a year ..i will try to move abroad for higher studies..
can you please suggest me that which place(country) can be suitable for my skin type 'promiseland' ??
your reply will ne highly appreciable ,
thanks smile
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SONIA-20 yo girl having ichthyosiform erithroderma(non bullous)

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