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#13368 - 01/30/07 05:10 AM Re: Roll Call!!
swebblie Offline
Member

Registered: 11/08/06
Posts: 48
Loc: Wollongong, Australia
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

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#13369 - 01/30/07 05:21 AM Re: Roll Call!!
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
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

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#13370 - 01/30/07 06:04 AM Re: Roll Call!!
swebblie Offline
Member

Registered: 11/08/06
Posts: 48
Loc: Wollongong, Australia
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

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#13371 - 01/30/07 06:19 AM Re: Roll Call!!
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
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]

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#13372 - 01/30/07 06:25 AM Re: Roll Call!!
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
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!
_________________________
Courtney
Mom to Julia

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#13373 - 01/30/07 06:48 AM Re: Roll Call!!
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
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...

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#13374 - 01/30/07 03:09 PM Re: Roll Call!!
Lizzie Offline
Member

Registered: 09/14/05
Posts: 77
Loc: Ireland
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.

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#13375 - 01/30/07 07:20 PM Re: Roll Call!!
jrmiss86 Offline
Member

Registered: 06/07/05
Posts: 378
Loc: Marlton, NJ, USA
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
_________________________
Heather
Mom to:
Alex (xli and Kallmans - 2/3/05)
Liz (3/16/07)

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#13376 - 01/30/07 08:23 PM Re: Roll Call!!
Curtise Offline
Member

Registered: 05/16/06
Posts: 115
Loc: Sheffield, UK
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!

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#13377 - 01/30/07 09:18 PM Re: Roll Call!!
graciesmom Offline
Member

Registered: 02/10/06
Posts: 155
Loc: orange park, florida,usa
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.

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