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#23084 - 10/31/08 06:40 PM New Mummy
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
Hi, I have a beautiful 7 week old daughter - Ivy with suspected Lamellar Ichthyosis. They haven't diagnosed Lamellar but have diagnosed Ichthyosis. Until she was born I hadn't even heard of the condition!! We basically don't know very much about it and would be very grateful to anyone who can help us!! She was born with a collodian membrane and the doctors and nurses who delivered her hadn't seen it before either. We've seen the dermatologist 3 times since she was born but don't really tell us anything new. The scales on her body have nearly come away she just has a few left on her arms and legs, but her scalp has the majority of scales. Because she was born with a full head of hair they are really stubborn. She has scales on her forehead too which seem to be coming away slowly. When she was born we used 50/50 white soft parafin but on the advice of the nurse now use hydromol to try and loosen the remaining scales whilst using bandages. Her red skin has lessened over the weeks and now looks a "normal" skin colour. I think we just want to talk to other people in the same situation as us. We have no-one to talk to about her condition. What to expect with her skin, what the future holds, how her skin reacts to things, how to wash clothes etc. We live in the UK.
Thanks in advance.

Emma

http://s393.photobucket.com/albums/pp16/Emmalina0/?action=view&current=P1020369.jpg


_________________________
Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

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#23085 - 10/31/08 08:49 PM Re: New Mummy [Re: Ivy's Mummy]
anaronni215 Offline
Member

Registered: 10/13/08
Posts: 37
Loc: Rhode Island, USA
Hi my name is Julie. I had two children born with a collodion membrane. If you want to chat I have instant messenger. It is anaronni07@yahoo.com.
_________________________
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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#23086 - 10/31/08 08:55 PM Re: New Mummy [Re: anaronni215]
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Welcome to the board!
Thanks for showing us pictures of your sweet girl smile

Because I'm much older and have a different type (EHK) I don't have too much advice for you. Others with much more knowledge will come along for that. There is a UK group that I know Les will be able to share with you.

I just wanted to say Hi *waves across the pond*
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#23097 - 11/01/08 04:34 PM Re: New Mummy [Re: Sarah Helen]
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
Thanks for commenting on my post. Julie, I don't have instant messenger but will have a go at downloading this week so I can ask a few questions.
Thanks once again

Emma
_________________________
Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

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#23098 - 11/01/08 04:34 PM Re: New Mummy [Re: Ivy's Mummy]
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
Sorry forgot to say thanks Sarah!!! Hi to you too.

Emma
_________________________
Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

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#23099 - 11/01/08 11:31 PM Re: New Mummy [Re: Ivy's Mummy]
aylasmom Offline
Member

Registered: 05/29/06
Posts: 215
Loc: Waterford ,MI
Beautiful girl- Welcome to the board-

Dawnn (mom to Ayla, 2.5 years- born with collodion membrane/CIE)

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#23101 - 11/02/08 01:33 AM Re: New Mummy [Re: aylasmom]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Hi Emma- Congratulations, beautiful little girl!

Brandyn is 4 months old now and was born with a collodion membrane and has been diagnosed with lamellar ichthyosis. I understand the frustration of not knowing anyone to talk to that understands Ivy's condition but you have certainly found a great place here :)Everyone here is extremely welcoming and helpful.
We're very new at all of this too but you can e-mail me anytime mgotfried@urban-ent.com and I'm glad to help in anyway I can.

Regarding scalp scales..it was recommended to me here to use olive oil which has worked absolute wonders in the 1 1/2 weeks we've been using it. I just rub it on Brandyn's scalp at the beginning of his bath and then at the end, I gently rub a face cloth over his scalp. We have also found that two baths a day works really well at hydrating his skin and getting the dead skin off. I have read that baths dry out some peoples skin though so just be aware of that.
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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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#23104 - 11/02/08 02:14 AM Re: New Mummy [Re: brandynsmum]
KimNL Offline
Member

Registered: 07/31/08
Posts: 146
Loc: Holyrood, NL, Canada
She's gorgeous!
Thankfully you found this board and it should help. It has helped us immensely! Our daughter, Casey (presumed Lamellar Ich), was born this past February and this board has been invaluable. Lots of trial and error as different products work for different people.
Our regimen: Baths twice weekly.
AM - Dermal therapy lotion, followed by Cetaphil Cream mixed with a dollop of pure Glycerine, followed by Aquaphor
After each diaper change - Cetaphil cream + glycerine, followed by Aquaphor
PM - Either Dermal therapy or Lac-Hydrin 12%, followed by the cetaphil/glycerine mixture followed by Aquaphor.
She is doing quite well so far - but we're gearing up for our first full winter, so that regimen may change based on her needs.
I think the UK has a similar climate to ours (wet/foggy)so at least the air has moisture which helps. We are in Newfoundland , Canada.
Anyway, we're all here to help each other. Feel free to email me if you wish! kimghaney@gmail.com

Good luck
_________________________
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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#23108 - 11/02/08 10:50 AM Re: New Mummy [Re: KimNL]
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
Thanks to everyone who has been supportive here! It's good to have people to talk to at last!!!

We have been told not to bath her very often so have only been doing it once every 2 days. I think I might try once a day to see what happens. I think it's just going to be trial and error with her skin!!

Have tried olive oil but only twice but will keep trying it at bath times especially with a face cloth.

We have noticed that her skin does seem to get better if we're outside which I find odd as it's freezing here at the moment but maybe it's the moisture in the air. We went to an outdoor Halloween/Bonfire party last night and lots of people commented on how much better her skin looked. We had been out for most of the day also, so I do think fresh air helps.

I feel much better knowing I can talk to other people who understand - thanks!!!

Emma
_________________________
Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

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#23109 - 11/02/08 11:00 AM Re: New Mummy [Re: Ivy's Mummy]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Hi Emma, I just wanted to add the our dermatologist also told us not to bathe Brandyn often. Obviously, we are not in the habit of going against what he says but in this case, it proved worthwhile. I think you're doing the right thing by trying a bath once a day and that way you can see how you go! The worst that happens is that it dries Ivy out and then you know it doesn't work and best case scenario, it really helps.
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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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#23112 - 11/02/08 03:45 PM Re: New Mummy [Re: brandynsmum]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Many doctors say not to give baths, but it really just aggravates the problem for most of us. Bathing rehydrates the skin. We lose water from evaporationat a faster rate than normal skin because the waxy layer is broken and can't keep it in. There's not enough oil to keep the skin soft because that part of the skin isn't mutated - it's just the keratin molecule or one of the enzymes used to make the keratin. Sweat isn't affected, either, although sometimes the pores are blocked by the skin because it is so thick.

Bathing soaks the dead skin and makes it soft. The best thing to use to get the dead skin off is natural skin oil, but there isn't enough. Some of us solve the problem with soap as an emulsifier - my husband is affected, and the soap takes the place of skin oil when he rubs. For me, the soap just removes my skin oil and makes my hands too slippery to be effective. The other thing that works well is acid washes - alpha hydroxy acids like lactic, salicylic and glycolic, as well as urea (uric acid). They work by loosening the bonds of the dead skin with the lower layers. Steroids also work, but those have side effects and should probably not be used on a young child.

Most of us bathe at least once a day, some of us twice or 3 times, and most of us spend at least an hour a day on bathing. It's all trial and error. Some do better with 3 short baths and re-creaming. Others do better with a long soak. For my family, soaking is problematic and steam in the shower is the most effective method.
_________________________
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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#23122 - 11/03/08 01:49 PM Re: New Mummy [Re: brandynsmum]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
Hi Emma & welcome to both you and beautiful Ivy!
You'll get loads of great advice and invaluable support on here!!

I have a 20 month old daughter with probable CIE, and like yourself, felt very much isolated following her birth in relation to her skin condition as no-one had heard of Ichthyosis (except the Derm). But then I found these boards!

In answer to some of your questions I'll tell you our regime re: skin care (but it's all very much trial and error and it differs from person to person - You just have to find what suits!)

We only bathe once a day (evening). We use Balnium at present but are about to start trials with other emollients. She soaks for approx 30 mins while I scrub with a mit (got mine from Boots!) but I have to say she's not that co-operative at present! She's got far too much playing to do without me rubbing away at her! The scalp area is an issue for us too, especially as she's now getting more and more hair! We put Cetraben cream on as soon as she gets in the tub, leave it to soak then comb it off (taking loose scales) then we wash it off with Johnson's baby shampoo (T-Gel once per week) then condition with Johnson's baby stuff! With regards to her creaming routine we exfolliate dry skin away first thing in the morning (we found this to be better than an additional soak in the tub) then lather her up with Cetraben and Calmurid (our derm didn't prescribe Calmurid until she was 1 as it contains urea and lactic acid which has the potential to sting). Then throughout the day we just keep her topped up with the Cetraben and Calmurid at each nappy change. At times we put Aquadrate on the areas where she's scratched (predominently ankles and knees) as the Calmurid would send her though the roof!!

Good luck and feel free to PM me anytime!

J (also in the UK) x

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#23150 - 11/04/08 05:21 PM Re: New Mummy [Re: BritMum]
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
Just wanted to say a big thanks to everyone who's got in touch with advice. I really appreciate it.

x
_________________________
Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

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