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#13378 - 01/30/07 10:06 PM Re: Roll Call!!
didi4nyc Offline

Registered: 03/21/06
Posts: 168
Loc: ny
Decided to check in as well [img][/img]

Hi I am Dianna I have Netherton's Syndrome. I am 25 years old. A Gradstudent studying Psychology/counseling. No kids or husband but hopefully soon it will happen [img][/img]

To take care of myself... I use alot of Aquaphore, I love Nieva all the products, I tend to mix and match alot... at times I use Cocoa Butter. I use Atrax or clariten for itch. I take a good shower every morning and a shower at night if needed. To relax at times I take oatmeal baths with Caress Antibactirail body wash to make bubbles hehehehe. I am slowly learning to use make up for some reason I am terrified of it ...I find it so complicated. I love prescryptive make up products but at the moment they are way out of my budget. But if you can give them a try they are really good.
Pleasure to meet all of you [img][/img]

#13379 - 01/31/07 05:21 AM Re: Roll Call!!
chrischan Offline

Registered: 02/18/06
Posts: 24
Loc: Shrewsbury, Massachusetts, US
My name is Christine and I have 10 year old twin girls and a 7 year old son Braeden who has EHK.
He is in the first grade now and doing very well in school. We're very lucky that his teachers and the nurses are very supportive and understanding of his skin issues. Although I do not get the chance to reply to this bulletin as often as I like, I try to sign on and read as much as I can. The support and tips from everyone is invaluable and helps me to cope. Thanks to everyone for sharing.
I've got one thing that I use on Braeden that I haven't seen mentioned here before. To prevent flakes from sticking to his hair and looking like alot of dandruff, I spray Static Guard on a comb and then comb it through his hair. This prevents the flakes from his skin sticking to the hair. Especially during the winter. He used to scratch his head and then all the flakes would show right up. I would try to comb or blow it off but the static just wouldn't let go. This helps make his hair look much cleaner without the flakes. I've okayed this with his derm and she sees no harm in using it on his hair. This is especially good if you have dark hair like ours. I've already used this for at least a year now and there has been no harm to his hair at all.
The one skin care item I love is Theraplex Emollient. I use it only on his face because its so expensive. It helps keep his skin moisturized longer without the greasy look you get from Aquafor. It makes his face look very good. I use Curel Ultra Healing Intensive Cream on his body with aquafor or hydrolatum on his elbows, knees and feet.
Courtney, thanks for starting this off and giving me the chance to introduce myself. I would be more than glad to help anyone if I can (especially if it is related to EHK).

#13380 - 01/31/07 06:00 PM Re: Roll Call!!
Hearsay Offline


Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
I'm Jennifer (31), hubby is Brian (31, affected)
My kids are Nathan (4, affected), Miranda (2.5, not affected), and Elliot (13mo, affected)
We have CADIEWS - congenital autosomal dominant ichthyosiform erythroderma with white spots.

Nathan started Preschool in September. It took him a long time to warm up to gym and recess activities, but he is starting to really blossom now. We just signed him up for pre-k for next year, rather than the 4yo class. We're hoping that being around the slightly older kids will help him lose more of his fearfulness and gain some confidence in his social skills. Academically, he's doing great, well about his age level. His skin is pretty stable with our current routine.

Miranda just started preschool in January. She's still not real clear on why we do what we do to the boys - she wants us to file her, too, and she likes to hang out in the shower as long as her brothers do, and we have her own cream to use.

Elliot is 13 months. He seems to be getting the physical skills down a lot faster than Nathan did. He holds his bottle with one hand and is standing up and cruising furniture already, where his brother never did any of that until he was 14-15 months old. One thing he isn't doing is signing, which both of the older two did from about 10 months on. He's pretty stubborn.

Tip: if you can tolerate acids, have your doctor prescribe 30% salicylic acid in a cream base (velvachol, lubriderm, something reasonably cheap) and use it as a body wash in the shower for thickened areas. The high acid content will eat through a lot of the dead skin, then you can wash it off right away when it starts to burn.

Tip: St. Ives Apricot Scrub with 2% salicylic acid - it has walnut shell bits in it for an abrasive, and the salacid kills bacteria and prevents acne.

Tip: if you have really thick buildup on the feet, you can use a hand sander (Dremel) to file it down once the child is over age 3.

Tip: Pampers Cruisers or Huggies Supreme are the least abrasive of the disposable diapers, if you don't want to use cloth.

Tip: Mix 1/3 Maalox with 1/3 antifungal cream with 1/3 Aquaphor to prevent diaper rash. It's better than anything on the market.

Reticular Ichthyosiform Erythroderma with white spots.
Husband, Nathan - 4, Elliot - 1, all affected.
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"

#13381 - 01/31/07 06:09 PM Re: Roll Call!!
Hearsay Offline


Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Threerlxi - are you pregnant?! I seem to have missed that!

Oh, 2 more tips (yeah, just one...I guess I'm an overachiever!)

Tip: If the feet are drying out so bad that they can't walk, wrap them in plastic cooking wrap for a few hours and keep shoes on at all times.

Tip: If your knees are tired from sitting next to the tub all the time, or your child is balking about getting a bath/shower, get in with them. I find that a shower is easier and more effective than the bath.
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"

#13382 - 01/31/07 07:21 PM Re: Roll Call!!
Mama T Offline

Registered: 09/27/06
Posts: 17
Loc: Ellicott City, MD USA
Hi ~ My name is Jennifer and I've been lurking here off and on for the past two years since my son Trevor (a/k/a Mr. T) was born with LI.

Trevor is a happy, funny, expressive kid. He was born with a collodian membrane and was diagnosed with LI through genetic testing at around 6 months old. His LI is relatively mild but we still struggle with scales on his scalp, overheating in the summer, etc., etc.

We swear by sea salt baths, which we learned about through this website (thanks!).

Proud Mama of:
Trevor / Jan. 2005 / Lamellar
Spencer / Nov. 2007 / Lamellar

#13383 - 01/31/07 08:48 PM Re: Roll Call!!
skittles71 Offline

Registered: 01/16/06
Posts: 283
Loc: Catawba North carolina
Hello my name is Kathy I have 2 boys with x-linked.They are 15 yrs and soon to be 9yrs Feb.8.And let me tell ya having a teenager is really a challenge.He just got his permit and wants to drive everywhere.If I had nerve pills I sure would take them.He scares me to death and I cant stand it.But I know im going to have to get over it and let him drive.Well Jordan is just 100% boy loves to find different creatures outside.He likes to sit rabbit traps and catch rabbits.But most of the time he will catch something other then a rabbit.Im going to be honest about what I see that works best for there skin.I have'nt found that yet ..the boys are so picky on what they like and dont like.And if that product burns alot I just as well throw it away cause they want use it.I like the sea salt to put in there bath water.And I just use the lotion the doctor gave them.And before I forget I also have a 10 yr old daughter which will be 11 Feb. 28th.And boy is she a challenge to deal with.I think she is starting that little pre teenage adventure.She is so moody it is'nt funny I sure cant wait until its all over....wishfull thinking huh ? Ok and as for me im a preschool teacher.I teach 3yr olds ive been doing this now for 4 yrs and I love it.Well almost love it...i dont like when the sickness comes around.And ive been married this October 28th for 18yrs.Gosh thats a long time...but I love it.Well I think thats about all im not good at writing things like this.

#13384 - 02/01/07 12:32 AM Re: Roll Call!!
JoshsMummy Offline

Registered: 05/26/04
Posts: 63
Loc: QLD Australia
Your name: Kandice Harkin

Your child(ren's)'s name: Joshua Searle

What type of ich. (if any): CIE vs. EHK !

Age: Im 25 Josh is 3.5

Any updates on them you want to share?: moving josh to a more tropical climate is the best thing Ive ever done. One year on we feel totally at home here & have both adjusted to living a long way from family & friends. Joshuas skin has shown vast improvement. His hands now have a far greater rage of movement better than i ever hoped for, and cracks are down to hands & feet rather than anywhere his body moves.

How's mom (or dad!) doing?: generally speaking, very well, happier than ever before. However i still worry too much about josh & cant stop researching... but thats my job right?!

What's one tip on skincare you would recommend that people DIDN'T try that you have? lol
Well, I never tried it, but i would say definitely do not blindly follow doctors advice. I hate to think what condition josh would be in now if i had.
Always be one step ahead & stand firm. I have a big folder with sections on - Ich info, implications & treatments, joshuas medical archive, & photos.

What's one tip you'd definately recommend for skincare? I cannot speak highly enough of shea butter. If you havent tried it, Do!

other tips - we have spray bottles, one each & to cool josh down i mist him, but to make him happy to take part i let him get me too!

Instant ice packs, the kind u punch to activate, are excellent. when you are out & it gets hot, or even to cool down hot car seat straps & buckles. buy from a medical supplier. once they lose their cool (hehe saves me from losing mine!) they can be put in the freezer & used as a regular ice pack.

I get josh to put cream on me, let him see family members etc having creams put on & get him involved. makes him feel better about it & the bonus is its getting even more creams on his hands [img][/img]

ok thats enough out of me! bye for now [img][/img]

#13385 - 02/01/07 01:12 AM Re: Roll Call!!
ShanTed1 Offline

Registered: 09/08/06
Posts: 15
Loc: Cleveland, OH
Zach is doing very well, and growing up too fast right before our eyes. We are considering adoption of a child in the near future. A little brother to dote over may be just what he needs. His confidence keeps building every day in school.

As I have mentioned before on this site (and have been chastised for doing so), I would like even think of having another child who may be affected with ichthyosis.

In reading this post, I see that Erin and threeXLI are pregnant! How can you risk another children being affected, how selfish (esp. with XLI). I think you need to visit the site about birth control.

Go ahead, now everyone just slam me.

#13386 - 02/01/07 01:33 AM Re: Roll Call!!
jds Offline

Registered: 12/23/05
Posts: 432
Loc: Austin, Texas
OMG! Is it possible to NOT be so RUDE!!!!? To be honest, I think most people really do not want to hear your negative opinions. You have no right to give an opinion to someone as if you are the authority. The last time I checked you were not in the same realm as any god I know.

I sure hope that Zach doesn't grow to feel the way you do about his ichthyosis. I also hope he never finds out how you truly feel about him having it because it surely can't be good for the self essteem.

I really do wish that you could just post something nice and not be so outright ugly all the time. To be that bitter, must take practice.
Tammy (caregiver)
toddler son
lamellar ichthyosis

#13387 - 02/01/07 02:04 AM Re: Roll Call!!
swebblie Offline

Registered: 11/08/06
Posts: 48
Loc: Wollongong, Australia
Why do you insist on being rude, shanTed1? Is it for the attention? or do you do it too upset others?

Can't you see that no one wants to listen to you and your "opinions" about their choices.

Can't you see that this is a supportive group, not an attack and judge others group.

Please stop doing this. You have made yourself clear on many occasions, that you don't agree with the majority about having more children. Their is no reason for you to repeat this again. You are just being cruel!


PS. I wouldn't be here if every one thought like you. I thank God they don't.

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