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#13358 - 01/29/07 06:44 PM Roll Call!!
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
We need to pick things up again in here, and I want some updates!! lol

Your name:
Your child(ren's)'s name:
What type of ich. (if any):
Age:
Any updates on them you want to share?:
How's mom (or dad!) doing?:


What's one tip on skincare you would recommend that people DIDN'T try that you have? lol

What's one tip you'd definately recommend for skincare?
_________________________
Courtney
Mom to Julia

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#13359 - 01/29/07 07:44 PM Re: Roll Call!!
texlex99_dup1 Offline
Member

Registered: 09/28/06
Posts: 128
Loc: Brooklyn Park, MN USA
My name is Becky, I am the one with Nethertons Syndrome.

I have 3 daughters, Caitlin, 11yrs, Lexie, 7yrs, and Emma 15mo. Neither of them are affected with any type of ich that I know of.

I shower everyday, and I use Aquaphor over my entire body. I've been using the Aquaphor Gentle Baby Wash, and have had some good results. Meaning, it doesn't sting when I use it on the really broken out areas, or areas that I have scratched. Most soaps usually do sting to some extent.

One thing that I have found that works really well on really raw areas is 2% hydrocortisone cream mixed in with the Aquaphor, You have to get that in RX form from the derm, but it really helps with itch and redness. But don't use it on the entire body just on the really broken out spots. I have to use it on my legs daily, because they always seem to be bad. I've this combo for the last 30 years and that is the only thing that really works for me.

I would love to talk to anyone else about NS or any other types.

Becky

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#13360 - 01/29/07 07:55 PM Re: Roll Call!!
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
I should probably reply too, huh? lol

I'm Courtney, and my daughter is Julia (she's 16 months old), and she has Netherton's Syndrome.

Julia's doing really well - gaining weight really well (doing a weigh-in later today, I'll be updating!), and is trying reeeeally hard to pull herself up on things lol Baby-proofing, here we come! We did an assessment again on her with Early Intervention, and she's actually ahead cognitively (at about 18-19 months), but behind in nearly every other aspect (fine and gross motor, speech, etc).

I would NOT recommend skipping exfolliating the scalp lol I've done this before, and it just doubles the amount of time she has to be in the bath the next day (my back doesn't thank me lol). She also seems to be more red in her head area (which I know isn't a problem for all the ich. types) when we skip exfolliation. It's soooo tempting to do though, her scalp is the hardest part to do!

My current love is Triceram and Theraplex! We use both on her face now (ignore my thoughts in the "I love Triceram!" thread that they wouldn't work well together lol). Triceram has helped tremendously with the reddness in her face (we'll see how long that lasts though - her skin 'gets used' to creams after 3-4 weeks and we have to switch it up); and the Theraplex has done great things for moisturizing (also just on her face) - it's not shiny, and absorbs pretty quickly.
_________________________
Courtney
Mom to Julia

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#13361 - 01/29/07 08:00 PM Re: Roll Call!!
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
Okay...I have a total of 3 free minutes LOL! I have been SO freakin busy I can barely catch my breath. The kids are great. Grey lost his first tooth right after Christmas. The boys are doing really well with homeschooling. Cade's learning addition now and he's only four so I'm proud of course...he's way above preschool level. Grey is well past anything they do in K so we are working on a lot of 1st grade stuff with him. Leah has started taking naps here and there in her own bed which has been wonderful. She is actually requesting to go to her room when she's tired. Once she is in there, there is no getting her out of her bed. She's certainly not acting like a two year old...more like a teenage girl...I can't get her up after she wakes from her nap LOL. Cade and Leah's skin is of course a little worse being that it's winter but nothing terrible. They are doing well and we can't complain. Washing their hair daily (especially with the tea tree shampoo) and using the Paul Mitchell Awapuhi spray (LOVE that stuff!) has been GREAT for their scalps.
Aside from kid stuff...My husband got a really nice promotion to start off the new year (which came with a really nice raise so yay!) We had to euthanize one of our ferrets nine days ago. He was suffering from Inflammatory Bowel Disease, I hand fed him four times a day for two months, he had exploratory surgery the day after Christmas, and continued to go down hill. At the end he was on 5 meds, vomiting with every feed, and his IBD had turned to Lymphosarcoma. It was by far the hardest time we have been through with one of our animals. My grandfather has been in the hospital for almost two weeks with congestive heart failure and pneumonia. He is scheduled for surgery tomorrow for a pacemaker/defibrillator. It's been a difficult couple of months so I am hoping for a break soon.
Other than all of that...it's business as usual in our house. Phewwww...that was longer than 3 minutes!
Lisa
_________________________

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#13362 - 01/29/07 10:19 PM Re: Roll Call!!
sideshowbob Offline
Member

Registered: 10/23/05
Posts: 209
Loc: Midwest, USA
Your name: Sideshow Bob, but you can call me "Dora"

Your child(ren's)'s name: we'll call her "Alice" (I guess I should just make up a name for her, since I post so much!)

What type of ich. (if any): Lamellar, most likely

Age: 2

Any updates on them you want to share?: Alice is obnoxiously smart -- today she correctly spelled her last name over and over and over again while I was trying to look at furniture. Our potty training a few months out fizzled out, but now she is interested in the potty again. We tried disposable training pants, but she said they were "scratchy". She doesn't want to try "big girl" panties yet, so I don't think she'll get potty trained any time soon.

How's mom (or dad!) doing?: Hanging in there...


What's one tip on skincare you would recommend that people DIDN'T try that you have? Letting a toddler tell you if they need lotion or not. She'll run away from me yelling that she doesn't need it, scratching viciously at her legs the whole time.

What's one tip you'd definately recommend for skincare? Sea salt soaks a couple of times a week really work for us. Cetaphil lotion blended with glycerin, sweet almond oil, and cocoa butter are getting us through the winter with no cracking (knock wood!) and very little flaking! Thanks to everyone for all the great suggestions -- Alice's skin looks completely different than it did a year ago!
_________________________
4 year old daughter with CIE

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#13363 - 01/30/07 12:04 AM Re: Roll Call!!
Chrissie Offline
Member

Registered: 07/20/06
Posts: 122
Loc: The Gap, Brisbane, Qld Austral...
What a great idea [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

I am Chrissie, the grandmother of Alicia who is 6.
Type: Well it could be a few to be honest, easier to say what she is not. She isn't lamellar, or harlequin.
Alicia brothers do not have Ichthyosis.

About to try a new cream and will update on that.

Bathing is a great help as is swimming.

Tried to keep a diary of foods taken, weather conditions etc and mood but no pattern is obvious.

Most pressing issue just now is her behaviour. I am convinced she has "attachment disorder" through lack of bonding and the very early stages of life have impacted on her. We are going to have help with that to try and change her "hard wiring". It will take years but best to do it now to save on the teenage years.

Best tip as far as I am concerned is to accept the condition is there, and to attempt to educate others. Most importantly I think is serves us well not to have a "chip on our shoulder" and deal with each day as a gift. It takes many head miles to do this but it pays off big time.

I think the little business cards to hand out have been the best tool we have had yet. It is given to people who stare or ask. Often no words are exchanged. Our family just hand it to others and walk on. It is given in a kind hearted way and it thanks people for their interest and gives the conditon name "ichthyosis, the websites and my mobile number should anyone want to help in anyway.

Tips for skincare, be willing to try new products and keep track of the results. Involve the children at the earliest stage to take responsibilty and help them accept the condition. Focus on the inner beauty.

Kind thoughts
Chrissie.........Be the change you want to see in the world [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Kind thoughts to all of you
Chrissie

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#13364 - 01/30/07 01:36 AM Re: Roll Call!!
jds Offline
Member

Registered: 12/23/05
Posts: 432
Loc: Austin, Texas
My name is Tammy.

My one year old son, Jared, has lamellar.

We just saw the dermon Friday and he said he looks fantastic. Yay! He is getting a new tooth on top and one on bottom. I think that makes 6. His eye has healed relaly well since being dermabonded about 2 weeks ago. That darn walking sure does cause trouble. lol. He is definately more interested in walking now. I think it should be soon, but I don't know. He crawls so fast that most the time he takes a few staeps and there just isn't enough speed. He is trying to say a few words... maa (mommy), daa (daddy), daw (dog), ths (this) and juus (juice). He is very demanding, but in our house I think all the males tend to be this way. Me all alone in a house full of boys (even all our animals are male). Lucky for me, I have all brothers so I've had years to prepare.

I am doing well. Scrapbooked about 15 pages recently. Started reading the third tear of the Travling Pants series. I am anxiously awaiting hte next Harry Potter movie and book. I think both should be out this summer.

As for things not to try... waiting to cut fingernails because of the fight it takes. This allowed our little guy to wake up one morning with his entire head covered in blood. He had scratched a section of skin right off and made it raw in the middle of the night. From now on, I take the fight. I love him too much not to.

Things to try... Carmol 40 has worked great at softenin gthe scales much better than amlactin. Beware it is stinky for about 10 minutes. To be honest, it reminds me of cat pee. Yuck. Also, we have been using Curel Natural Healting and Cerave. Both of these have been the best moisturizers all winter. Right now, Jared doen't have eyebrows; they are sealed off by the skin. Usually his face looks great but winter weather has a way of changing things.

I guess that's it. I love reading updates on everyone!!
_________________________
Tammy (caregiver)
******************
toddler son
lamellar ichthyosis

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#13365 - 01/30/07 01:41 AM Re: Roll Call!!
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
I think everyone knows me...
I have three boys with XLI currently 5, 9 and 12..but all of that will change in the next three months. I am a carrier of XLI and have zero symptoms. I am forever thankful to this website and BB because in 1996 when we were testing for genetic conditions this specific site was not availble to me. I feel this site has made a huge difference for patients, Doctors, students and parents alike. My children are very lucky, happy and resilent. Our routine works great for us. One tip that I would recommend is to keep trying different skin care remedies (after checking with your DR.) to see what works. Salt baths, swimming in the ocean, Dove shampoo, and aquaphor are what my boys cannot live without "right now". The last tip...have a support system of friends, family and people that you can talk too....last of all, read, read, read-educate, educate, and educate, everyone that you meet.

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#13366 - 01/30/07 02:28 AM Re: Roll Call!!
aylasmom Offline
Member

Registered: 05/29/06
Posts: 215
Loc: Waterford ,MI
Hi everyone-

My name is Dawnn.

My nine month old daughter, Ayla, was born with collodion membrane, and what we are calling CIE.

She is crawling like a madwoman, walking along the furniture, and just the past couple of days started letting go. She will stand until she realizes she's not holding on and then sit down very quickly. She says a few words...cat, dog, dad...of course not mama!

Her skin has been pretty good, with the exception of her scalp...She has a ton of hair, but underneath is a constant battle.

We haven't tried anything that's been too much of a flop...lots of good advice here on the board...

We love fleece jammies- They have kept her nice a moist throughout the night.

Mom is tired...Ayla hates her crib! I am almost done with my prereq's for nursing, and have managed to stick to my resolution to join weight watchers and have lost 10.2 lbs in three weeks (quite a feat for a pizza and ice cream junkie!)

Thanks for asking Courtney...It's nice to hear updates!

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#13367 - 01/30/07 04:37 AM Re: Roll Call!!
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hi Courtney, hope you don't mind me posting here...hehehe, my two boys are the four-legged kind...

Firstly, Chris, be careful that you don't turn your granddaughter into an unfeeling robot...gee she is only 6 years old, I had this attachment problem, as my mother still does now because she had so much time spent with me...she finds it hard to have me out of her sight, always worrying, etc...wanting to know where i am...

But boy you could not get a more caring mother, and I am very sensitive and concerned about other people's lives, and i really take it to heart, and put all my heart into helping them...

I wouldn't change my upbringing for the world...i know your granddaughter's upbringing was a lot different, and it is very sad, but be careful please...don't make her hard nosed...and as for the cards, what is wrong with just explaining to people, it works for me...otherwise one is placing too much importance on the condition, and if you want her to accept it, then don't put so much focus on it...

NOW...MY CONTRIBUTION...

I am 42 years old, I have EHK
I have two sons:
One has the Abyssinian type of Ichthyosis, and the other the fluffy, malting ginger type...

They are fastidious about keeping their skin clean, and they eat like a horse, like many of us do...

Alex the Abyssinian is driving his mum and dad nuts, as he keeps going over to the neighbour's backyard and disturbing their avery. so I am forever tyring to bring him home, and keep him in his cat run outside...

Samson is a wateroholic, so no chance of his Ich drying out, and he loves licking my feet while i am at the toilet, and pulling my skin off...

I use flea powder on the boys, and I use cetrimide cream on myself, to keep my skin hydrated and comfortable...while i am on Accutane

That's it for me, and i just love all of the 2 legged children variety on this board, they are so cute... no disrespect meant please, i truly love your children to bits, and would love to meet them all one day...

Oh and I am substitute mum to Jake, in England, Jake has Netherton's syndrome, but you will have to ask his mum what she uses on his skin... [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Hi Lisa, and Hi Jake
Love Pauline
XXXX

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