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#24021 - 03/19/09 11:37 PM Lammelar Ichthyosis
Elliot Sullivan Offline
Member

Registered: 03/19/09
Posts: 14
Hi.

I am very new to this forum. My baby son Elliot was born 08 02 2009. He had Collodion Baby Syndrome and appears to have the condition Ichthyosis (Possibly Lammelar). We are waiting for a referal to Great Ormond Street Hospital in London for confirmation / Help.

In the UK there seems to be very limited information on this condition. If anyone can help with their own experiences or case studies I would be very greatful. As I said, the info available in the UK is very limited.

Many thanks in advance.

Richard
_________________________
Elliot

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#24023 - 03/20/09 08:02 PM Re: Lammelar Ichthyosis [Re: Elliot Sullivan]
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
Hi Richard, congratulations on the birth of your son.

We too are in the UK and our daughter has suspected Lamellar. The only information we have got really is through this invaluable site. The people here are truly amazing and certainly helped us when Ivy was first born. It's a daunting time as you don't know what to expect but as time goes on you get into your routine and learn more about the condition and what works best for your baby.

There is an Ichthyosis Support Group in the UK and if you email them they will send you a newsletter and some information on the condition.

Feel free to ask any question you have on this site. There are many people with loads of experience who will share with you what they know.

Feel free to PM me anytime,



_________________________
Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

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#24024 - 03/20/09 08:33 PM Re: Lammelar Ichthyosis [Re: Ivy's Mummy]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
Hi there,

Congrats on the birth of baby Elliot & welcome to this great site!

We are in the UK too. Our 2 year old daughter has probable CIE. As Emma said, as time goes by things get easier and you will find your own routine with skin care. But rest assured, you will get tonnes of invaluable support, advice and handy hints on here! They're a great bunch of people who all experience similar things from time to time, and they are always ready to offer support and reassurance! It's done me the world of good coming on here. Just knowing that others go though things that we go through helps tremendously!

Good luck with everything and be sure to keep us posted on Elliot's progress! My adivce at this pont will be to enjoy your baby boy & moisturise, moisturise, moisturise!!

Feel free to PM me if you want to!

J

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#24026 - 03/20/09 11:23 PM Re: Lammelar Ichthyosis [Re: BritMum]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Congratulations!!! Just repeating what others have said about how invaluable this site is smile

I know everything seems very confusing right now and there is so much unknown but it does get better. Ask as many questions as you need to here because frankly, I find that everyone on here knows as much if not more than many doctors,lol!!

PM me anytime, you can also e-mail me if you prefer. mgotfried@urban-ent.com

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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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#24032 - 03/21/09 07:40 AM Re: Lammelar Ichthyosis [Re: brandynsmum]
Elliot Sullivan Offline
Member

Registered: 03/19/09
Posts: 14
Thank you all.

This is good to know. I thought that we were on our own with this. I need now to have a look around the forums to see what info is out there.

Again, thanks you so much.


Richard
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Elliot

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