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#27510 - 03/21/11 01:27 AM Our New arrival
melangelmusic Offline
Member

Registered: 08/08/08
Posts: 42
Loc: UK
Hi Everyone,

Just wanted to stop by to let you know that on 10th February I had a beautiful baby girl. We named her Rebecca Grace and she was born with Bullous Ichthyosis (EHK) like myself. She was in special care for 2 weeks but is home now and is continuing to do really well considering. We are currently using 50/50 cream on her skin, Oilatum Plus in her bath and dressings for her blisters. We are having problems with Nappies (diapers) however. Have tried all kinds even reusable terry's but no joy. So at the moment I'm just trying the softest disposables we could find for her using a soft conti cloth/liner to minimise the nappy causing friction/rubbing on her thighs and the bottom of her back where she has been getting the worst broken skin and blisters so far.

Any further advice from other parents would be most appreciated.

Thanks
Melanie
_________________________
My name is Melanie, I'm 32 years old and am from the UK. I have Bullous Ichthyosis (EHK)and have a baby daughter with Bullous/EHK also. I run the website below;
www.friends-of-ichthyosis.webs.com

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#27511 - 03/21/11 04:38 AM Re: Our New arrival [Re: melangelmusic]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Congratulations!

Can you go diaperless so long she's mostly immobile? Maybe keep her wrapped loosely in a towel or if it's warm enough, bottom half naked on one of those waterproof pads? Maybe the skin will heal some if the diaper isn't on all the time.

You'll be an expert in a week or two! Enjoy your lovely little girl.
_________________________
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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#27512 - 03/22/11 12:13 AM Re: Our New arrival [Re: Hearsay]
melangelmusic Offline
Member

Registered: 08/08/08
Posts: 42
Loc: UK
Hi Jennifer, thanks for the tips much appreciated. I forgot to mention in my post that I do sometimes leave her with a nappy off just underneath her as well as having a waterproof mat underneath her too. Only do this when we are at home and as long as it's warm enough though. The conti pads seem to be working so far in helping mimise the broken skin from the nappy rubbing when she's moving about and kicking her legs.

Melanie x
_________________________
My name is Melanie, I'm 32 years old and am from the UK. I have Bullous Ichthyosis (EHK)and have a baby daughter with Bullous/EHK also. I run the website below;
www.friends-of-ichthyosis.webs.com

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#27516 - 03/25/11 01:32 AM Re: Our New arrival [Re: melangelmusic]
snackmom Offline
Member

Registered: 01/29/08
Posts: 39
Loc: mechanicsburg, PA, USA
Hi Melanie-
Congratulations (again) on your little princess. I do not have much to offer as for advice, but will share a brief description of our experience with David. We used disposable diapers, but were limited to the brand because he would breakout in a rash. Anyway, we gooped the entire diaper area with aquaphor! We also kept pants on him (little cotton leggings turned inside out) to help reduce some of the friction against the diaper.

We were also careful with the type of wipes we used. we stuck with Pampers sensitive or plain water and cloth. The alcohol in most of them was too much for him.

We were fortunate that the blisters in this area were few and far between. He seemed to stop blistering in the diaper area a lot sooner than the rest of his body.
I am sure by now you have a system just about figured out, as you know it all works differently for each individual. Good luck and congratulations again to you and your family!

Christine

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#27518 - 03/27/11 12:26 AM Re: Our New arrival [Re: snackmom]
melangelmusic Offline
Member

Registered: 08/08/08
Posts: 42
Loc: UK
Hi Christine, many thanks for sharing your experience I really appreciate it. I don't use any wipes on Rebecca, just warm water with a tiny drop (and I mean a tiny drop) of Oilatm plus in. I also use either conti wipes or cotton wool to clean her with. She's had a few more blisters since I last posted here, and she even had a small blister on her head the other night, but it popped overnight as she must've lay on it and it's cleared up now. Since using the conti wipes as a liner to try and help reduce the nappy/diaper rubbing and breaking her skin, her groin area hasn't been anywhere near as bad as it was prior to using the conti wipes. The wipes are very soft and have no moisture on them at all unlike ordinary baby wipes. She's gaining weight still and still fedding great too which is fantastic. She was 6lb 10.5oz when she was weighed around 10 days ago and she was 7lb 3oz when she was weighed yesterday (Friday), so we're really pleased about that.

Thanks again Christine, keep in touch. Hope all is well with you and your family too by the way.

Melanie x
_________________________
My name is Melanie, I'm 32 years old and am from the UK. I have Bullous Ichthyosis (EHK)and have a baby daughter with Bullous/EHK also. I run the website below;
www.friends-of-ichthyosis.webs.com

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#27636 - 05/15/11 11:31 AM Re: Our New arrival [Re: melangelmusic]
twinmum Offline
Member

Registered: 10/22/10
Posts: 42
Loc: NSW, Australia
Hi Melanie - congratulations! I guess 3 months in you have found somethings that are working but I wanted to say the brand of disposable nappies I use on Harry (bullous EHK, 9months old) are called Moonies - they are Japanese and I buy them from a website called myhappybaby.com.au here in Aus but you should be able to source them in the UK or online from japan - they are cotton not pulp and are really soft. The other thing we used to do before finding them was to just rip the inner piece of elastic from each side of the regular disposables and that seemed to help. I use cotton makeup pads with water to clean or else aqueous cream - a thick glob of it helps to remove poo gently I find.

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#27642 - 05/16/11 02:25 AM Re: Our New arrival [Re: twinmum]
MamaH2 Offline
Member

Registered: 11/27/08
Posts: 77
Loc: Virginia
Melanie, congrats on your baby. I know I'm a bit late on the nappie info, but we used 100% unbleached cotton prefold diapers without covers for at home. Ivy didn't get as many blisters with those as with the paper diapers. When we did go out we used BumGenius! cloth diapers. I also made sure that the elastic was never too tight around her legs. That seemed to cause more blisters. But honestly, the best thing for her during the first many months was to go without a diaper. (she was actually bare bummed for most of her first 2 years!) we don't have carpet in our home so it wasn't a big deal, and she potty trained extremely easily!
Have you ever heard of elimination communication? I don't have the time or patience to do it, but it would have saved Ivy's skin a few bum blisters.
She still gets blisters on her bum, it seems like that is the most blistery area, despite the fact that she wears big girl undies now.
~Lizzy

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#27702 - 06/08/11 03:36 PM Re: Our New arrival [Re: melangelmusic]
AT:) Offline
Member

Registered: 05/29/11
Posts: 9
Hi Melanie & Congratulations!

Like you, I also have EHK w/a daughter w/EHK (now 26 & doing great smile. When our li'l one was born, we used extra virgin olive oil to take away the raw red & help make Rx applications easier. Because disposable diapers would literally rip her skin, she was placed on a sheepskin & we only used 100% cotton diapers....hello laundry! hehe.

Are you nursing?? We have 2 daughters & I attempted to nurse both times. The reason I'm asking is because I'm curious to know if your skin will go thru some changes as mine did. Right at 2 weeks, my skin shed COMPLETELY!! I stopped nursing #1 because she wasn't gaining wgt. Again w/#2, the skin shed, but it stayed CLEAR (as in miracle clear!!) until I stopped nursing!! I could only nurse her for 2 mos. cuz she wasn't gaining either...just curious what your experience will be. At the time, I asked various drs., but no one had a clue.
Best Wishes,
AT smile

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#27713 - 06/09/11 05:01 PM Re: Our New arrival [Re: AT:)]
melangelmusic Offline
Member

Registered: 08/08/08
Posts: 42
Loc: UK
Hi TwinMum, Lizzy and AT many thanks for your replies much appreciated. I was wondering if any of you would be intersted in keeping in touch via PM, email or if you are on there Facebook? just let me know, It would be great if we could chat and share our experiences

Melanie
_________________________
My name is Melanie, I'm 32 years old and am from the UK. I have Bullous Ichthyosis (EHK)and have a baby daughter with Bullous/EHK also. I run the website below;
www.friends-of-ichthyosis.webs.com

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#27716 - 06/09/11 08:21 PM Re: Our New arrival [Re: melangelmusic]
AT:) Offline
Member

Registered: 05/29/11
Posts: 9
Hi Melanie,
Absolutely! I do best w/email...what is PM? If email is ez for you, send me your addy & I'll respond.
Later!
Andrea (aka AT :))

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#27717 - 06/09/11 11:58 PM Re: Our New arrival [Re: AT:)]
melangelmusic Offline
Member

Registered: 08/08/08
Posts: 42
Loc: UK
Hi Andrea, I have sent you a PM (private Message) with my email address, when you log in you should see an envelope flashing next to the 'My Stuff' tab at the top which shows you have a new private message.Thanks for offering to talk, I really appreciate it.
Best wishes
Melanie
_________________________
My name is Melanie, I'm 32 years old and am from the UK. I have Bullous Ichthyosis (EHK)and have a baby daughter with Bullous/EHK also. I run the website below;
www.friends-of-ichthyosis.webs.com

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#27720 - 06/12/11 02:18 AM Re: Our New arrival [Re: AT:)]
MKJULES Offline
Member

Registered: 06/15/09
Posts: 12
Loc: Dallas, Texas
one of the softest cloth diapers i have found is Happy Heiney (sp) Super Soft. I had the hardest time with my son when he was in diapers-cloth and store bought. I just discovered these when I was pregnant with my daughter. I hope you find something that works well for you.. I know how irritating it can me to spend money on diapers that your babies cant wear.

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#27737 - 06/18/11 11:33 AM Re: Our New arrival [Re: MamaH2]
twinmum Offline
Member

Registered: 10/22/10
Posts: 42
Loc: NSW, Australia
Hi Lizzy - sounds like you did your own form of EC! I was keen to do that, but the reality of twins and EHK and sleep deprivation threw that out the window!
Melanie - Keeping in touch as a group of EHK mums is a great idea - i've joined your facebook page - have you others found it too?
Courtney


Originally Posted By: MamaH2
Melanie, congrats on your baby. I know I'm a bit late on the nappie info, but we used 100% unbleached cotton prefold diapers without covers for at home. Ivy didn't get as many blisters with those as with the paper diapers. When we did go out we used BumGenius! cloth diapers. I also made sure that the elastic was never too tight around her legs. That seemed to cause more blisters. But honestly, the best thing for her during the first many months was to go without a diaper. (she was actually bare bummed for most of her first 2 years!) we don't have carpet in our home so it wasn't a big deal, and she potty trained extremely easily!
Have you ever heard of elimination communication? I don't have the time or patience to do it, but it would have saved Ivy's skin a few bum blisters.
She still gets blisters on her bum, it seems like that is the most blistery area, despite the fact that she wears big girl undies now.
~Lizzy

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