feeling sad

Posted by: babygirlbeach

feeling sad - 11/27/06 03:23 AM

Well I'm a little stressed and down in the dumps. My little girl who is 41/2 has EHK where her hands and palms are affected. She also has thick brown areas on her knees (front and back) as well as under her arms. I had a total meltdown tonight after she went to sleep because it just seems that these days her affected areas are really difficult to keep under control. It absolutely breaks my heart every night when we have to put on several lotions and none seem to be doing the trick right now. We use these at different times or days (tazorac, keralyte, amlactin, and regular lotion). My husband keeps telling me that it is like this every winter but still it doesn't make it any easier and its hard to remember if it really was. She has been questioned this year in Pre-K by other kids and actually has had one occassion where someone called her an ugly name (creepy hands) because of her cracked, dry hands. I thought I was going to just die inside. My heart broke into a million pieces that day and I tried very hard to keep my emotions concealed around her when all I wanted to do was cry with her. I just want her to be o.k. and feel good about herself. I don't want others to pick on her and make her feel bad about her skin or who she is. She is absolutely the prettiest, sweetiest, kindest, and most loving little girl I know. It seems that she is self confident and that she is o.k. with her skin being different but I really hope that she is deep down inside. We talk and she seems to be fine. She has no reason to be or feel ashamed or different. I tell her all the time that everyone has something different about them and that she is no different than anyone else. I just know as the years go on, especially the teenage ones, that she will be questioned and maybe even teased but I hope that she will continue to be confident and be open and talk to me about her feelings. It absolutely scares me! I know that I am just worring about things that haven't even happened yet but I can't help it. Anyway, if anyone has any words of advice to make my heart feel better and to make my tears stop flowing then I would appreciate it. Also, if you have any suggestions on lotions, creams, bath wash please let me know.

[This message has been edited by babygirlbeach (edited November 26, 2006).]
Posted by: pauline5

Re: feeling sad - 11/27/06 03:56 AM

Hi babygirlbeach:

I really feel and hear your pain...just know that you are doing everything you can to make your daughter feel good about herself...

Every parent will anguish about their child's pain, and feelings of not giving immediate relief.

Try not to look too far ahead, just keep doing what you're doing now, and it will all right itself in the end...your encouraging words and belief in her will help her manage any taughts she MIGHT receive later... it is quite often that the child handles it better than there parents, and she will be able to handle things better than you think...Try not to worry too much, just take one day at a time...

Right now just keep her skin comfortable, and don't give up on how it progresses, believe me it will improve as time goes on...

have you ever tried Parrafin ointment on her hands?? ...palms and fronts...I am 42 and i also have EHK affecting my soles and palms...

I use 50%liquid parrafin in 50% soft white parrafin...and I put it on at night time, with a pair of white cotton gloves...this really soaks in overnight, and truly softens the skin, and helps to heal the cracks...it usually shows some immediate relief the next morning when she wakes up...

it is only if i have used my hands too much and they are severely cracked...when it will take about 3 days to heal with the same treatment regime...HANG IN THERE...

Another idea: try to protect her hands from the strong cold winds...keep a pair of warm gloves on them when it is feasible...i know gloves are a pain to do things with them on...but it will stop them cracking so much...it is the cold air that does this, apart from overuse...

I know how heartbreaking it is for you, but you are doing just fine right now...
Please don't hesitate to contact me if you want any other advise for your daughter's skin...and if you want an empathising ear...

Cheer up and Take Care [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
Regards Pauline
p.s. I just had another thought...

Does your daughter like to have baths? Because salt baths are very good at getting the scale off...often much quicker than the creams...OR it aids the effects of the creams...
I would use approximately 1/2 cup...depending on how fragile her skin is...the more fragile then the less used...and try and get her to soak in it for about 20mins...it takes time for the salt to work its way into the scale, and it will go white, and it should exfoliate off much easier, with a gentle rub of a facewasher...

Hope these ideas are useful for you...

[This message has been edited by pauline5 (edited November 26, 2006).]
Posted by: chrischan

Re: feeling sad - 11/27/06 05:34 AM

Hi Babygirlbeach,
I know how you are feeling. My 7 year old son has EHK too but his palms and soles of his feet are the only areas not affected. He is dry all over and his worst areas are on his hands, elbows, underarm, back of his neck, knees, ankles and the top of his feet. Oh, the scalp is the absolute worst and most painful to maintain. We already deal with so much to keep them feeling comfortable and looking good. I think the hardest part is not being able to protect them emotionally. It sounds like you are already doing everything you can at this time. When my son started pre-school, I worried what other kids may say to him too. He just started 1st grade and I still worry that someone will say something to him to hurt his feelings. I've taught him to say "It's just dry skin" when people ask about his skin. He also sees me calmly telling people the same thing when they ask. I've found that kids usually accept that answer and just go back to playing with him. I've found that kids at that age are really just curious. I tell him the same thing that it's ok to be different. You may feel better speaking with the teacher and knowing that she is keeping an eye out on that happening in the future. Her emotional well being is so important and can affect her attitude towards wanting to go to school. I think being a mom, it will hurt every time we hear something like that. I get angry, depressed and sad too. It is so unfair that they have to go through this. I used to worry about his future too. But I've found that you just have to take each day at a time and deal with the future when it comes. And you know, the future when you get to it isn't as bad as I was so worried about. I'm confident that with our continued encouragement and guidance they will be able to handle any problems on their own. It sounds like you are already doing a great job of making her feel confident about herself. Please feel free to email me if you have any questions or I can give you my telephone number if you need someone to talk to. I hope you are feeling better. Everyone on this board is so caring and understanding. Smile!
Posted by: CShell

Re: feeling sad - 11/27/06 08:30 AM

Oh man, you're living what my fear is exactly when Julia gets older. I wish I had some fantastic advice for you, but from what I read I think you're doing everything great, and I think I'd do exactly the same.

Just from my short 14 months experience, the attitude *you* have rubs off on everyone around you, including your child. When I'm feeling particularly vulnerable one day about Jules having Netherton's and we go out in public and someone asks a question, their response is *always* significanly more "oh poor baby". When I'm feeling confident, when I don't care what people think and they ask questions, they always have a "wow, I didn't know that, I'm glad I learned something new" sort of reaction. Know what I mean?

I don't even know what else to say, but ((hugs)), and like I say to everyone else, I'm always open to chatting, my e-mail's in my profile [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
Posted by: Kotick

Re: feeling sad - 11/27/06 11:21 AM

I thin CShell hit the nail right on the head. Its all about attitude, whether you have ichthyosis or not people respond to confidence. Sure you will always have the knockers and the ignorant people who wish to make your life hell, but these people aren't worth anyones time. Two things I have learned in my 29 years with ichthyosis.

1 - Ichthyosis is an opportunity, not an imposition. For me, my work has required me to network a lot and with ichthyosis, I have an advantage. Lets face it, when I walk into a room, everyone wants to know what I have whether they are willing to admit it or not. So I usually say something like "in case you were wondering, I am not burnt, I have ichthyosis" before giving a 30 second explaination. I then switch to other topics relating to work and before I know it I have my foot in the door. In addition to this, people always remember me, they don't always remember if I am good or bad, but they do remember me and that is half the battle.

2 - Secondly, Anything I do for my skin I do for comfort, not cosmetic appearence. Basically I decided a long time ago that life is too short to spend hours every day making my skin look as "normal" as possible. That and the realisation that by going to extremes to make my skin normal I was really saying that what my skin looks like is important. Very hypocritical when I expect others to accept me for who I am regardless of my skin. (I am not having a go at anyone, just my personal opinion, we all have to make our own choices)

At the end of the day, anyone who is willing to accept me regardless of the appearence of my skin is not someone I wish to know. Anyone who can not accept me or treat me different because of my skin, I would rather not interact with.
Posted by: pauline5

Re: feeling sad - 11/27/06 01:13 PM

Wow, you tell em Jeff...I agree with yourself and CShell whole heartedly...

i too only look after my skin for comfort not for looks...as an adult I have never put cream on during the daytime, but i have to right now (I am only taking Accutane to kill the odour which has been a pain, anything else is just a bonus) My mother was forever covering up my skin while i was a kid, so that i would not be stared at or teased...

but once i got old enough to dress myself, off came the clothes, i couldn't give two hoots what they thought...it would have been more obvious if i tried to hide it from everyone...I go out in shorts and singlets with scale and all...that way i feel like everyone else out there who can choose whatever they wish to wear...I won't be held prisoner just because others may have a problem with it...

Like Jeff said, I too will not cover up just so that people stop staring, because then I am agreeing with them that my skin is not good enough to be exposed...When I go shopping for clothes, I just march on into the change rooms, without giving them enough time to dwell on what might be wrong with my skin. But when i used to go with Mum she was so nervous that they would tell us to leave, that they ended up doing just that.

and like you guys said, if they can't accept you for who you are, then too bad...My skin is all I was born with, so it is normal in our eyes...nothing wrong with it...Our condition is purely a numbers game...we are only stared at or in the minority groups because we don't have the numbers...pure and simple...

if 90% of the population had Ichthyosis then so called normal skin would be stared at...Please young parents try and keep this in mind, the next time your child is teased at school, and try and teach them this moral also...so they don't feel like an outcast...and they should hold their head up in pride when out in public.

And also encourage them to educate others about their skin...I hear many people say they don't like people asking about their's or their child's skin (which is fine) but I feel from personal experience, that if people stare in ignorance, they are none the wiser, but if we invite them to be educated, then their ignorance may diminish. I have always felt very happy to explain to people when they ask, as I can't stand the thought that they are watching in fear from afar...when there is nothing to be fearful of.

sorry for preaching, this topic really fires me up... [img]http://www.ichthyosis.com/ubb/smile.gif[/img]


[This message has been edited by pauline5 (edited November 27, 2006).]
Posted by: babygirlbeach

Re: feeling sad - 11/27/06 01:27 PM

Thanks guys for all the words of wisdom. I do try to instill in Lauren that the most important thing I person can have is a good heart! The time she got teased at school, I used that as an opportunity to teach her something good. I told her to remember how she felt when someone hurt her feelings about her skin being different. I told her to remember never to judge or make fun of anyone that is different because they would feel hurt just as she did that day. I have been and always will continue to teach her that what is on the inside is what really matters and that she should be proud of who she is and for exactly the way she is. I always tell her that mommy and daddy wanted a little girl really bad and God was really nice and made a special little girl just for them. We are very close and talk alot. I just hope it continues as she gets older and matures [img]http://www.ichthyosis.com/ubb/smile.gif[/img] Thanks again!
Posted by: wva

Re: feeling sad - 11/27/06 01:53 PM

Everything that everyone said on here is true. I have LI and I have always had to deal with people looking at me like what's wrong with you. I have always had my family and friends around me and my "MOM'S POSITIVE CONFIDENCE" that gave me confidence. All of you parents on here can take comfort in the fact that you give your children the right amount of compassion and confidence to get them through anything. Now I have to do the same for my children that do not have ich. But, there is always something that other kids will make fun of or a few insensitive parents will comment about your children. My kids get teased about being short. I'm 5'1" and my husband is 5'4". But, they don't care. They are in gymnastics and my sons said they hope they don't grow too much because they want to stay smaller and more agile for gymnastics. It's all in how you look at it.

Just a quick note that my mom had me wear the cotton gloves and socks with my creams as a child too and I still do at times. Soaking in the bathtub at night (not in the mornings before going out in the cold) really helps a lot in your favorite bath oil (I prefer skin so soft by Avon) and salt water, wash off the dry skin as much as she can handle it, pat dry her skin, (When My skin is really flaky, I towel dry by rubbing my skin hard to remove the excess dry skin, then I rewet my skin in the shower and put more bath oil on it, and only pat dry the second time) and apply your moisturizer (adding glycerin to it may help it hold moisture longer) and apply Aquaphor, Eucerin, or petroleum jelly on top to hold the moisture longer.
Posted by: AdamsMom

Re: feeling sad - 11/28/06 02:19 AM

Where in Georgia do you live? We are in Alpharetta with Adam, who is also 4 1/2 with palmer/planter EHK.
Posted by: babygirlbeach

Re: feeling sad - 11/28/06 02:57 AM

We live in Hoschton. It is in Atlanta. Does your son have it only on his hands and feet or other places. She has thick scales on her knees (front/back), elbows, and underarms.

[This message has been edited by babygirlbeach (edited November 27, 2006).]
Posted by: AdamsMom

Re: feeling sad - 11/28/06 02:03 PM

he has it all over - knees, elbows, etc... but particularly on palms and soles. Did you go to the conference this summer? who do you see as a derm here?
Posted by: babygirlbeach

Re: feeling sad - 11/28/06 04:16 PM

We see Dr. Spraker at Emory Dermatology. We go every 6 months but really no change. What types of lotion do you guys use?
Posted by: Ellamay

Re: feeling sad - 11/28/06 06:39 PM

We use Epaderm all over our daughters skin it is thick and waxy does not rub off and does not come off with water it is brilliant. Not sure if you can get it in the States but its ingredients are Liquid paraffin, Emulsifying wax (containing cetostearyl Alcohol & sodium lauryl sulphate) and yellow soft paraffin you may be able to get something similar it is much much better than 50/50 (liquid and soft white paraffin) as that rubs off easily.

Good luck and keep up the good work
Posted by: debbie upton

Re: feeling sad - 11/28/06 07:15 PM

Dear Babygirlbeach, I hope you are feeling a bit better now. I know how you feel - as parents of children with any condition, we too have a special need. I tell my son that sometimes when I am fussing and he understands it. My son is 13 and also copes unbelievably well with his 'dry skin'. It hasn't been easy but it has been far easier than I thought it would be as I sat with him in special care on the day of his birth and imagined his entire life and how difficult it was going to be. I am a teacher and I see children being nasty to each other - it is part of growing up and we need to accept it as that. My son has been called names from time to time but it does not affect him. He shrugs it off, but it is more difficult for us as parents to do that because we imagine our children's pain and it is usually far worse than reality. When my son was about 3 we were watching a cartoon together - there was a dragon in acage and it was crying. I said to my son something like - oh poor dragon. My son said 'why are you sad, your'e not that dragon'. That has really stayed with me and if I ever had any advice to give a parent of a child with any serious condition I would say this: remember that it is your child that has the condition and not you.
I also comfort myself with the fact that I have always done the best I can. Take care!