Roll Call!!

Posted by: CShell

Roll Call!! - 01/29/07 06:44 PM

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?
Posted by: texlex99_dup1

Re: Roll Call!! - 01/29/07 07:44 PM

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
Posted by: CShell

Re: Roll Call!! - 01/29/07 07:55 PM

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.
Posted by: Angel24755

Re: Roll Call!! - 01/29/07 08:00 PM

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
Posted by: sideshowbob

Re: Roll Call!! - 01/29/07 10:19 PM

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!
Posted by: Chrissie

Re: Roll Call!! - 01/30/07 12:04 AM

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
Posted by: jds

Re: Roll Call!! - 01/30/07 01:36 AM

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!!
Posted by: threerxli

Re: Roll Call!! - 01/30/07 01:41 AM

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.
Posted by: aylasmom

Re: Roll Call!! - 01/30/07 02:28 AM

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!
Posted by: pauline5

Re: Roll Call!! - 01/30/07 04:37 AM

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
Posted by: swebblie

Re: Roll Call!! - 01/30/07 05:10 AM

My name is Sarah and I am 27, I have a son, Tobias who is almost 4, he has x-linked ichthyosis. I also have a daughter who is 8 months old. As as opposed to Ayla, she hasn't worked out what her legs do yet, she thinks they are just convenient chew toys. But she does talk a lot to make up for the lack of movement.

Tobias saw his pediatrician today and we talked about what questions I should ask when we go to the pediatric genetic clinic next week. My aim is to find out if he can be tested for x-linked ichthyosis (it's not as easy in Australia to get the test done.)He also suggested that he is tested for Cutis Marmorata Telangiectatica Congenita (CMTC) and for Rothmund-Thompson syndrome because he has visible veins all over his body, like when babies are cold. It sort of looks like he is wrapped in a blue fish net.
I also want to find out if any of these have a link to the epilepsy he has. I really hope that over the next few months I can get some real answers.

I must say that I gave up on removing the scales from my sons head when he was 2, he was an extremely active toddler and could not sit still long enough. I spent the first two years of his life fighting the scalp scale with limited success, and I really don't think the scales are hurting him, they haven't gotten any worse and they naturally lift when they are ready and are brushed out in the morning.

It's great to read about everyone and how they are doing.
Sarah
Posted by: pauline5

Re: Roll Call!! - 01/30/07 05:21 AM

Hi Sarah, I agree, the scales don't hurt us on our scalps ...(hope i am not generalising here), the only problem, is if they get too thick on the scalp, it might prevent us from losing heat from our head, and cause us to overheat...all of this heat intolerance stuff...

Yes, washing hair allows it to loosen in its own good time, no use forcing it off, as it leaves it raw underneath...

when i was a baby and young child, my mother used to cut all my hair off to make it easier for her to get it out...but i had infections in my scalp also...

I can just imagine your child wiggling and jiggling around there... [img]http://www.ichthyosis.com/ubb/smile.gif[/img] how frustrating for you... [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Pauline
Posted by: swebblie

Re: Roll Call!! - 01/30/07 06:04 AM

Hi Pauline, It is great to hear from you. I agree with the whole "overheating issues" but his scale isn't that thick, it doesn't cover his whole scalp and really when it comes down to it, he doesn't sweat anyway. So we just make sure that he has plenty to drink and we keep him as cool as we can.
By the way, he was more of a runner and jumper and throw yourself around, then a wiggler and jiggler. Age and maturity has slowed him down "a little". :-)

Sarah
Posted by: pauline5

Re: Roll Call!! - 01/30/07 06:19 AM

Well it sounds like you have to watch all your sensitive bits then...I used to kick my mother whenever she tried to put creams and stuff on me, or i would throw my shoes or jars of ointment at her...

So get the Braveheart Shield ready, for the attack...

hehehe [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
Posted by: CShell

Re: Roll Call!! - 01/30/07 06:25 AM

Quote:
Originally posted by pauline5:
Hi Sarah, I agree, the scales don't hurt us on our scalps ...(hope i am not generalising here), the only problem, is if they get too thick on the scalp, it might prevent us from losing heat from our head, and cause us to overheat...all of this heat intolerance stuff...

Yes, washing hair allows it to loosen in its own good time, no use forcing it off, as it leaves it raw underneath...

when i was a baby and young child, my mother used to cut all my hair off to make it easier for her to get it out...but i had infections in my scalp also...

I can just imagine your child wiggling and jiggling around there... [img]http://www.ichthyosis.com/ubb/smile.gif[/img] how frustrating for you... [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Pauline



For us at least (Netherton's), it's a matter of infection with the scales on her scalp. Julia's face and head scale the most (everyday an entire layer of skin peels from her chin to the back of her head; while from her shoulders and below, it's more like eczema than NS symptoms). She's gotten a ton of skin infections from me being lazy about removing the skin when she was an infant, so now I make sure to do it as often as humanly possible lol I have contemplated shaving her head to make it easier (half the struggle is trying to get the skin out of her hair, not off her scalp!), but I just can't when it comes down to it lol Maybe that's vain!
Posted by: pauline5

Re: Roll Call!! - 01/30/07 06:48 AM

yes, Courtney, that is why my mum cut most of my hair off, so it was easier to comb out of hair...I hated it of course, and no wonder i have always felt like a tomboy...and she bought me a real girlie wig wheni was about 6 or 7...still have the photo somewhere, at a birthday party...
Posted by: Lizzie

Re: Roll Call!! - 01/30/07 03:09 PM

Your name: Lizzie
Your child(ren's)'s name: David
What type of ich. (if any): Not sure possibly CIE but the derms are also now looking at harlequins
Age: 18 mths
Any updates on them you want to share?: David is not walking crawling or standing on his own just yet and he doesn't have any words or talk. He will walk if we hold his hands and will stand if holding onto something. He can't get from sitting to standing ang vice versa so we are doing some physio to try and aid this. He protests at his baths and having his creams put on in fact he protests at everything!!! And he won't sleep in his cot no matter what we try. "3 nights to make it 3 nights to break it" We can't even get 3 hrs in his cot before he starts crying, scratching etc at which time he sees us in the room and then refuses to go back to sleep untill he is in our bed.......well anything for a night sleep eh!
How's mom (or dad!) doing?: mum struggles at times, I still haven't really gotten use to it and mum and dad blame ourselves alot : (


What's one tip on skincare you would recommend that people DIDN'T try that you have? lol Wet wrapping with Tubifast bandages and La Roche Possay lipikar baume

What's one tip you'd definately recommend for skincare? have the courage to try different creams and lotions, we never had and are still very wary of try something different. Having said that the derms have advised us to stay away from "varnished" products such as oilatum, eucerin, as David skins is to "open." We still just use the equivalent of your Aquaphor only with the Lipikar on his face and hands.
Posted by: jrmiss86

Re: Roll Call!! - 01/30/07 07:20 PM

Hi there everybody.

My name is Heather and my son Alex has x-linked and another condition called Kallmans. Amazinly, at least to me anyway is that he will be two on Saturday. It seems like only yesterday that he was born. We have another baby on the way, a girl, Elizabeth Rose. My c-section will be the week of March 19th. We do not know yet if she is a carrier of both. We will find out at some point, but as of right now we are not in a rush. She will not need to know until she has children herself.

Alex is doing very well. Up until these last two weeks we have had a very mild winter here in southern NJ so his skin was doing great. The last two weeks it has gotten much colder so he is much drier than he was two weeks ago, but he seems to be dealing with it without too much fuss. One thing that he is real big on right now is jumping. He just figured out how to jump, so now he jumps everywhere. Our new motto in the house is, why walk there when you can jump there and make twice the noise. Alex is also very excited because now that he is two, he has started bible study on Tuesdays when I go. Instead of just going to the nusery, he goes to a new classroom and they do a little bible story and craft. He is in love, he loves being the big boy.

My husband and I are doing well. The new house is finally coming together, it only took 8 months. Just as we are really getting settled along comes the new baby.

Our current favorite lotion is Aveeno Baby soothing relief cream. Even in this cold weather it has kept his skin very well moisturized.

That is all I can think of at the moment.

Have a great day

Heather
Posted by: Curtise

Re: Roll Call!! - 01/30/07 08:23 PM

Hi, I'm Curtise and Nina, who has EHK, is nearly 13 months.
She's not rolling, crawling, standing or walking at all, but is very busy with her fine motor skills. She babbles a lot, with the occasional identifiable "mama" or "dada", but usually she does an all-purpose "ahhh-da"! She's a lot happier this last few months, so mum and dad are too.

I've no great tips or wisdom to impart, I'm afraid, I still feel like I'm on an enormous learning curve. We are trying to experiment more, but feel bad if it doesn't suit her (like the shampoo which triggered her excema, oh dear...) The skill I'm working on is to try and reach a balance between recognising that EHK is a big deal and time-consuming and challenging sometimes, but also keeping it all in perspective, enjoying our daughter as the great little person she is, and not focusing on the skin thing too much. Also balancing her needs with those of Claudia (nearly 5) and Owen (3). It's a work in progress, shall we say!
Posted by: graciesmom

Re: Roll Call!! - 01/30/07 09:18 PM

Hello! My name is Jennifer and I have two little girls. Clare is 3 1/2 and Gracie is almost 17 months. Gracie has Lamellar, or at least we have been told. Testing is in the near future to hopefully find out exactly what type of Ich. she has.

Gracie is doing well. She is such a happy little soul and makes me laugh daily. Gracie just discovered how to run and climb so she is a very busy little girl (as well as mom). Gracie is extremely talkative and very outgoing however, she is very hard-headed and knows exactly what she wants. Unfortunately, lotions and scalp care are not tollerated well.

Mom and dad are doing well. We are in the process of selling our house and relocating to North Carolina so life is a little stressful these days. Dealing with Ichthyosis is still a bit of a struggle for me although it has gotten much easier. It's such a struggle for me to not obsess with Gracie's skin. I want Gracie to live a normal life but it's hard to find a balance between taking care of Gracie's skin and obsessing with skin care and her health. I'm very greatful for Gracies continued health, it amazes me how far she has come in just 17 months! I'm so blessed to have both of my children in my life!

I would not recommend skipping baths. I know everyone is different (some take baths twice a day and some twice a week) but for us baths are wonderful. If I ever feel lazy and skip a bath I pay for it the next day because I definately can see a build up of skin.

For us, sea salt baths along with exfoliating gloves are great. I love to try different lotions but have only found just a few that we love. we use aveeno skin relief moisturizing cream mixed with glycerin, aquaphor, lac-hydrin, mimyx cream, and sween 24. I just ordered some emu oil so I'll be interested to see how that works. In the house I run a cool-mist humidifier and I definately can see good results. I take it everywhere and have even requested my parents and in-laws to run them when we visit.

What a great idea, Courtney! This has been fun, thank you.
Posted by: didi4nyc

Re: Roll Call!! - 01/30/07 10:06 PM

Decided to check in as well [img]http://www.ichthyosis.com/ubb/smile.gif[/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]http://www.ichthyosis.com/ubb/smile.gif[/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]http://www.ichthyosis.com/ubb/smile.gif[/img]
Posted by: chrischan

Re: Roll Call!! - 01/31/07 05:21 AM

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).
Christine
Posted by: Hearsay

Re: Roll Call!! - 01/31/07 06:00 PM

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.
Posted by: Hearsay

Re: Roll Call!! - 01/31/07 06:09 PM

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.
Posted by: Mama T

Re: Roll Call!! - 01/31/07 07:21 PM

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!).
Posted by: skittles71

Re: Roll Call!! - 01/31/07 08:48 PM

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 ? ...lol 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.
Posted by: JoshsMummy

Re: Roll Call!! - 02/01/07 12:32 AM

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]http://www.ichthyosis.com/ubb/wink.gif[/img]

ok thats enough out of me! bye for now [img]http://www.ichthyosis.com/ubb/biggrin.gif[/img]
Posted by: ShanTed1

Re: Roll Call!! - 02/01/07 01:12 AM

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.
Posted by: jds

Re: Roll Call!! - 02/01/07 01:33 AM

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.
Posted by: swebblie

Re: Roll Call!! - 02/01/07 02:04 AM

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!

Sarah.

PS. I wouldn't be here if every one thought like you. I thank God they don't.
Posted by: skittles71

Re: Roll Call!! - 02/01/07 02:10 AM

ShanTed1
If you know everyone is going to slam you why do you even say anything negative about them? With my 3rd child which has x-linked he was a total surprise.What would you say to me knowing I had my tubes tied and I still had a baby ? So no matter what if God wants you to have a baby hes going to give you one.And now im greatful he gave me Jordan cause my older son has someone that knows how he feels and there not alone.They help each other with lotions and they lean on each other.So I think you need to rethink about having another child instead of adopting.If you have another child with ichthyosis you know it was meant to be.And if you did'nt then that was meant to be also.Least my boys dont have to grow up alone woundering why they are the only ones that have this skin condition.They can always look at each other and realize they have each other.So think about if you want your child growing up and making him feel like hes alone.Have another child and leave it in God's hand.I can see if this was a life threating disease.

[This message has been edited by skittles71 (edited January 31, 2007).]
Posted by: Hearsay

Re: Roll Call!! - 02/01/07 02:22 AM

ShanTed, your reply is completely uncalled for in this thread. Everyone has to make their own decisions about family planning, and your lack of support is appalling. For one, everyone has different odds of passing things on, and two, everyone here has different severities to cope with. And three, I, too have a child from an unplanned and actively prevented pregnancy. Would you prefer to slam me over my choice not to abort Elliot? Thanks. Move along.

Jennifer
Posted by: jrmiss86

Re: Roll Call!! - 02/01/07 01:20 PM

We are also having a baby in the very near future(7 weeks). And I will say that this baby was actively planned, even knowing the risk of having another affected boy. My husband and I looked at all of our options and decided that we would take our chances. We love our son and I wouldn't trade him for the world, and if we had ended up having another affected child we would have loved him just as much. We still do not know if our daughter is a carrier, but that wouldn't change our decision. We do not feel that the xli and our sons other disorder(Kallmans) is impacting his life in a negative way. He is a very happy and healthy two year old.

Heather
Posted by: Angel24755

Re: Roll Call!! - 02/01/07 01:46 PM

Okay folks...
It is very clear to me that Shanted obviously enjoys getting our feathers ruffled. Every single post from this individual includes some sort of a slam or a low blow. Their sole existence here is simply to upset everyone else. I strongly advise that we reply to the posts from the other members and 100% ignore any posts from Shanted unless he/she learns how to "play" with the rest of the group. This person is obviously disturbed and I honestly think that we are feeding this sick game of his/hers with our responses.
I don't need to prove that I am a good mother by replying to the low blows. I know I am a fantastic mother. I have come to realize that this person can't come to terms with his/her own life and can't stand how comfortable we all are with the way our lives are. I am not even certain that this person has a child with Ichthyosis or is who he/she says they are. Please, rather than get frustrated, just ignore! This board is normally a very happy, peaceful, helpful group. There is no reason to allow all of this negativity to change that. I will be ignoring and moving on and I do hope the rest of you choose that option as well.
My very best to all of you!
Lisa
Posted by: threerxli

Re: Roll Call!! - 02/01/07 02:35 PM

Sorry Lisa, I tried, but my fingers just kept typing anyway!
Posted by: Angel24755

Re: Roll Call!! - 02/01/07 03:08 PM

LOL LOL LOL!!!
Posted by: Evan's Mommy

Re: Roll Call!! - 02/01/07 03:14 PM

Better Late than never...

Kimberly & Mark parents of Sophia, Harrison and Evan
18 month old Evan has palmar plantar EHK

Evan has been making wonderful strides since Thanksgiving, literally. He started walking. His team of "ists" (speech, OT, PT, derm, ped) are happy with his progress and he seems much more content with his new found independence. He's in the 30th percentile for height and 5th for weight. I do not have any current photos or I would post them. His skin is well his skin. It is thick, blistered and often painful, but to everyone's awe, he continues to shine. We are going to sign him up for a toddler gymnastics/movement class this spring.

Mom and Dad are doing OK to good on most days. Having a child with special health needs can really take it out of you. He doesn't sleep well and EHK aside, Evan has a strong personality (don't most toddlers??!!). EHK has simply become part of the family routine, just get it all done and get on with the day. I have begun working more which has been wonderful for me. I am a freelance food writer/recipe developer and getting back into the kitchen has been so excellent, plus the little bit of extra money is great too!


What's one tip on skincare you would recommend that people DIDN'T try that you have? Evan's routine is pretty basic. We haven't varied all that much. Aquaphor on hands, feet and face. Lotion everywhere else.

What's one tip you'd definately recommend for skincare? We still medicate Evan during his morning "treatment." This is atypical with ichthyosis but it has worked famously in this family. Bleach in the daily bath water and socks over his hands to let the aquaphor soak in.

We have two favorite new items in the household: a set of aquadrums that float in the bath tub. I'd suggets googling aqua drums to find some and basic brilliance cotton clothes (www.basicbrilliance.com). This company makes 100% long sleeve onsies with no snaps and cut toddler caps. They come in fun bright colors. Prices are not over the top but they are not cheap either.

I love this board and our community. It gives me comfort, hope, support and strength.

Have a wonderful day everyone!
Kimberly
Posted by: Evan's Mommy

Re: Roll Call!! - 02/01/07 03:20 PM

With regard to babies,

I once heard a mother of a child with an extreme genetic condition (non-ich) explain why she and her husband decided to have more children. She said "if the new baby is born with "(I forget the condition)", we already know how to care for it and our first child will have an extra special bond with her sibling. If the new baby is born healthy, that's fine too."

I found this very touching and very profound.

Building a family is a personal and private decision. Shame on those who feel so righteous that they can pass judgment.


Ciao.
Kimberly
Posted by: Ellamay

Re: Roll Call!! - 02/01/07 05:53 PM

Your name: Liz

Your child(ren's)'s name:Ellamay 2yrs

What type of ich. (if any):?CIE?

Age:2yrs 1 month

Any updates on them you want to share?:

Ellamay is doing very well her skin is very good at the moment. she is a very normal 2 yr old and has just hit the terrible 2's with a vengence!

We are attending the Ichthyosis support Group's 10 yr anniversary in London in march it sounds fantastic with lots of professional speekers, pharmacutical samples and loads of mums dads and adults with Ichthyosis to chat too!

Ellamay regularly attends Great Ormond St Hospital for dermatology appointments and currently for ear probs ie too much wax and skin build up. We use Sweet almond oil and oilatum in the bath, cetraben emolient to wash and epaderm after each bath, 2 baths a day.

Ellamay has just started pre school she hates being dropped off and hates having to leave!

How's mom (or dad!) doing?:

Mum is very stressed due to being the main reciever of the terrible 2's mostly in the form of being smacked and kicked when Ellamay can't get her own way (we are both very determined and neither of us give in, me & Ellamay that is). If anyone has any tips or ideas it would be much appreciated.


What's one tip on skincare you would recommend that people DIDN'T try that you have? none

What's one tip you'd definately recommend for skincare?

Epaderm it is fantastic and would assume it would work just as well for more severe forms of ichthyosis.

Glad to see MOST of you remain supportive of each other, continue the great work you are all achieving!

Liz
Posted by: atwoodclan

Re: Roll Call!! - 02/02/07 04:48 AM

Your name:Michelle
Your child(ren's)'s name:
Rebecca(almost 14), Andrew 10 1/2, Nathan 8, Katelyn almost 5, and Alex 5 mos on 2/3.
What type of ich. (if any): Alex has CIE-NB
Age: 5 mos
Any updates on them you want to share?:
Alex has been to both the pediatric opthamologist and pediatric orthopedic in Jan and is diung great. Also went to the geneticist and decided not to test at this time as we already knew it was spontanous as I have 4 non-ich kids & no family history of it.

Alex held up his head laying on his tummy tonight. Also started picking up toys next to him & puttung them in his mouth [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
How's mom (or dad!) doing?:

Hanging in there. Tired with all that is going on.

What's one tip on skincare you would recommend that people DIDN'T try that you have? Check prodcuts for Citric acid. We found this made our skin bleed in the hospital. A nurse used awipe on him bottom. It bleed. My other kids had citric acide allergies

What's one tip you'd definately recommend for skincare?
We have had great luck with the Johnson's Naturals head and toe wash. Plus the lotion-we use it on his head for now. Will have to switch once his hair comes in more.
It has olive oil, vitamin e & aloe which works better for us than Ceptapil which was drying out his skin for some reason.



[This message has been edited by atwoodclan (edited February 01, 2007).]
Posted by: Francesca

Re: Roll Call!! - 02/02/07 04:53 AM

Your name: Francesca
Your childs name: Lucia Belle
What type of ich. (if any): Netherton Syndrome
Age:15months
Any updates on them you want to share?: Our current concern is feeding or lack of...Lucia has been fed thru' a button since July06(prior to that was NG tube because of all the hospitalisation). We have persevered with oral feeds before each button feed and by last Dec she was eating a few spoonfuls of cereal or puree, sucking on fruit and veg, chewing on rusks and finally sucking a little from a beaker - it was poetry in motion!!! Then, we changed formula (on dietitian's advice)in mid Dec and sadly it has all gone pear-shaped - no interest in eating anymore and a consistent 'bring up' of all feeds along with a large amount of mucous....very distressing for all concerned and this has been going on for 7weeks now. She is due to have an endoscopy on Thurs, (all Xrays and contrast studies came back clear)- strangley she has been putting on weight(altho' this week she feels a little more slender than before)and thus with weight gain and an infection-free status she is scoring high with the ped....I have decided to video a couple of the feeds to show the doctors her distress....don't know whether it is related to NS or is a separate issue?
Lucia, however, recovers quickly from the choking and transforms back into her usual happy, cheery self! No crawling, walking or talking yet, but very good sitting, pointing, smiling,standing and listening(that won't last long!) She is particularly strong when pushing me away during bathtime, and has a mean right hook!

How's mom (or dad!) doing?:
Mostly good, but have some frustating moments....


What's one tip on skincare you would recommend that people DIDN'T try that you have?
lol What I have learnt is that what may work for one child with the same condition, may not work for Lucia.Don't despair, have the courage to experiment...

What's one tip you'd definately recommend for skincare?
Never skip it...and try and enjoy it? I know it sounds weird, but I got stuck on the negativity of having to remove the skin so meticulously, every day, especially on Lucia's face - it seemed so unnatural...but since I have a 'rhythm' now, both she and I really enjoy the massage aspect of rubbing the ointments in - she still protests on some areas(ie. scalp!!!) but in the main it has become a special time between us, and the bonding has been making up for all those months that I couldn't cuddle her properly in hospital!
Also, never realised how versatile Papaw Ointment could be!

I really appreciate all the advice and tips that that are posted on here - these handy hints have often saved the day!
Posted by: chopkins

Re: Roll Call!! - 02/02/07 03:34 PM

my name - Carrie Hopkins

daughters - Heather (LI) and Ashley (unaffected) - and 6 months pregnant with another little girl

I have been reading the board for the past few years, and have found great support and ideas to help me care for my daughter - I hope and pray my new baby will be unaffected, but non the less will love this child no matter what. I am so appalled and shocked by the posting of one individual - how rude and hurtful one can be!
Posted by: melissa

Re: Roll Call!! - 04/18/07 01:25 AM

My name is Melissa I have 2 daughters 9 and 7 my seven year old has EHK and so do I.
Who ever ShaneTed is you are obviousley looking for attention. I guess you are not getting enough at home. You are so rude I couldnt beleive all the bad posts you wrote. How dare you say the things you say!

[This message has been edited by melissa (edited April 17, 2007).]
Posted by: mumofcalista

Re: Roll Call!! - 04/20/07 12:04 PM

Hi all - havent been on in ages.

Name:Rebecca

Kids:Joanne 10, Jack 8, Nicola 5 and Calista 18mths

Ich: Calista has EHK (K10, hasnt affected palms and soles as yet)

Coping? Well, except during the terrible injuries that EHK toddlers achieve.

Tips to avoid: Visiting a dermatologist LOL!

Successful tips: 1)Soap - believe it or not, after visiting with a family who are into their 3rd generation of EHK, I took their advice and soaped up the bath until it was cloudy and soaked her in it. The build up which I had such trouble controlling (looked like mud stuck to her) rubbed off so easily. I now do this twice a week, followed by plastering on thick moisturiser head to toe, sitting her in the nude on a plastic sheet for about 2 episodes of hi-5 (is this show in the USA yet?) and allowing it to soak completely in. Her skin has never felt softer!

2) Scalp scale - Calista has a lot of hair and like most, I was pulling MY hair out trying to get scale out of hers. One day after her bath I decided to smear the thick moisture cream through her hair as well. I let it dry and the next day combed (again during hi-5!). The scales just slipped out and her hair looks beautiful and soft!

I was so delighted with these simple measures that I wanted to get on and post, in the hope that someone else may also have some joy.

Cheers,
Rebecca