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#10835 - 01/23/06 07:45 PM Kids teasing my boys with there Ichthyosis
skittles71 Offline
Member

Registered: 01/16/06
Posts: 283
Loc: Catawba North carolina
Hi all just thought I would come in here to see what advice you can give me to help my kids to understand why there getting teased alot cause there skin is different then other kids.Just a week ago my younger son got off the school bus crying because a child called him a lizzard.My heart just aches when i find out there getting made fun of.I try to explain that God has made them different and we have to except the way God made them.But no matter what I try to say they seem to still not understand.My youngest is the one really having the most issues out of this.Hes only 7 yrs old my other one is 14.When I cant fix it I always sit and think this is my fault.But as a parent I guess its normal to feel this way.I dont have anyone else to talk to about this cause my kids are the only ones around my area that have x- linked ichthyosis.Wish there was some sort of support group that I could go to but you have to go out of state to even get it.So this is my only way to talk about how I feel and see if anyone would be so kind to help me.Any suggestions would be greatly appericated.And one more thing im having a hard time finding a lotion that does'nt burn my youngest son.He screams and stands in front of a fan cause it hurts him so bad.For 14 yrs now i have'nt yet found a lotion that does'nt burn them.But now that my older son is 14 he can handle the burning now but my 7yr old cant.Well thanks alot for taking time out to read this.Have a Blessed Day.

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#10836 - 01/23/06 08:36 PM Re: Kids teasing my boys with there Ichthyosis
rodkarbrown Offline
Member

Registered: 05/23/05
Posts: 148
Loc: Rochelle IL USA
I have not experienced that yet with my 4 year old, but that is my fear once she goes to school. At pre-school, the kids are still nice. She is from Haiti, so her skin is dark and her Netherton Syndrome isn't as noticeable on her skin, BUT she has VERY LITTLE hair. That is her main issue. We do have a wig for her but I don't want her to feel like she HAS to wear it to be pretty. As a matter of fact, I think she is cuter without it, but I am her mom!

She cannot tolerate ANY lotions, as they burn. All that we can use on her is ointments. We currently use Aquaphor mixed with a low does of Protopic. I cannot say that is helps her itching totally, but it makes her skin look pretty good.

I hope that this has been somewhat helpful to you. I plan to do the same thing with Kaylee and already tell her that God made her this way and that she is special. It is so hard to see/hear our children get teased.

Blessings to you
Karla
_________________________
Karla Mom to twin girls from Haiti, Kaylee (Netherton Syndrome) Kylee not affected.

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#10837 - 01/24/06 02:33 AM Re: Kids teasing my boys with there Ichthyosis
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
Hi! I don't have much experience, my daughter's only 4 months old (she has Netherton's). But, I was an after-care teacher for a first grade class a few years back.

One of the kids in my class had some developmental delays, and also had a speech problem. He was constantly getting teased by the other kids, and at one point, would hide in the bathroom b/c he was so upset. What I ended up doing was, talking with his mother and doing some research on my own. Then I made sort of a presentation to the class - I asked all my kids to come up with one thing that made them unique and different from the other kids, and had them talk about it to everyone. One pair of kids talked about being twins, and mentioned how it made them angry everyone assumed they liked the same things. Another kid even had the guts to say he still had accidents at night - which sparked a discussion through the class about other kids who had the same problem. And then the kid who had the delays/speech problem talked about his experiences with it, and the classes he goes to, etc.

I don't know if something like that is possible where your child goes to school, but getting it out into the open and answering any questions the other kids had, really made the speech problems, etc, a non-issue. After that, there wasn't really anymore teasing. At the very least, if you haven't already, maybe you could talk to your son's teacher, give her some info on his ichthyosis, and alert her of the problem.

Maybe you could have your older son talk to his younger brother about his experiences with x-linked, too.

I hope I've been helpful. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
_________________________
Courtney
Mom to Julia

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#10838 - 01/24/06 01:46 PM Re: Kids teasing my boys with there Ichthyosis
skittles71 Offline
Member

Registered: 01/16/06
Posts: 283
Loc: Catawba North carolina
Thanks so much for your advice.I have talk with the school nurse and shes suppose to be getting with the class and explain to them Jordans condition.This was done when my older son was in Elem. so I dont see why this has'nt already been done with Jordan.Think I have asked serveral times.But again thanks alot for your help.
Quote:
Originally posted by CShell:
Hi! I don't have much experience, my daughter's only 4 months old (she has Netherton's). But, I was an after-care teacher for a first grade class a few years back.

One of the kids in my class had some developmental delays, and also had a speech problem. He was constantly getting teased by the other kids, and at one point, would hide in the bathroom b/c he was so upset. What I ended up doing was, talking with his mother and doing some research on my own. Then I made sort of a presentation to the class - I asked all my kids to come up with one thing that made them unique and different from the other kids, and had them talk about it to everyone. One pair of kids talked about being twins, and mentioned how it made them angry everyone assumed they liked the same things. Another kid even had the guts to say he still had accidents at night - which sparked a discussion through the class about other kids who had the same problem. And then the kid who had the delays/speech problem talked about his experiences with it, and the classes he goes to, etc.

I don't know if something like that is possible where your child goes to school, but getting it out into the open and answering any questions the other kids had, really made the speech problems, etc, a non-issue. After that, there wasn't really anymore teasing. At the very least, if you haven't already, maybe you could talk to your son's teacher, give her some info on his ichthyosis, and alert her of the problem.

Maybe you could have your older son talk to his younger brother about his experiences with x-linked, too.

I hope I've been helpful. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

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#10839 - 01/24/06 11:41 PM Re: Kids teasing my boys with there Ichthyosis
jds Offline
Member

Registered: 12/23/05
Posts: 432
Loc: Austin, Texas
Hi. You can go to the F.I.R.S.T website and order a video and teacher's guide for the classroom. You can view the intro online. The total cost is less than $20. Hope this helps.
_________________________
Tammy (caregiver)
******************
toddler son
lamellar ichthyosis

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#10840 - 01/26/06 08:45 PM Re: Kids teasing my boys with there Ichthyosis
charmed7 Offline
Member

Registered: 03/07/04
Posts: 165
Loc: Hartford, CT
My son is 7 too, he's in first grade. He gets taunted a little too. He says they call him red face and old man hands. I know it upsets him, but it doesn't seem to get him down. He's got some good friends that stick up for him too. Maybe you can invite some of his close friends over and try to help them bond and your son will know he has someone that doesn't think he's different. We live in a bigger community and there are a lot of differences between all the kids. So I don't think he sticks out that much. But I know what it's like to come from a small town and could imagine how cruel the kids could be if he was the only different person. Knowledge is the best tool.

I do have to admit, our household is a bit sarcastic anyway and we pick on eachother. I nick named my son Tomato for awhile. So I think that helped him realize the name calling really doesn't mean anything.

As far as the stinging skin, have you tried Aquaphor? That doesn't have anything in it that stings. You may want to use Aquaphor right after bath/shower and then follow up a little later with the other lotions to keep it moisturized. I think it's the small soares they get on their skin that makes the lotion sting.

Would your son be interested in setting up pen pals? Since they are the same age.

Good Luck.
_________________________
I have a gifted 14 year old boy with X-Link Ichthyosis, Type I Diabetes and Bipolor Disorder.
I have a 7 year old girl who is uncanningly healthy
I have a spunky 1 year old who doesn't quite understand the word "No" yet.

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#10841 - 01/26/06 11:33 PM Re: Kids teasing my boys with there Ichthyosis
skittles71 Offline
Member

Registered: 01/16/06
Posts: 283
Loc: Catawba North carolina
Hi charmed7 that would be great if the boys can be pen pals.Although Jordan will be 8 in a few weeks there still close in age.Just let me know what I need to do and I will do it my email address is skittles100671@aim.com hope to chat with ya soon.
Quote:
Originally posted by charmed7:

My son is 7 too, he's in first grade. He gets taunted a little too. He says they call him red face and old man hands. I know it upsets him, but it doesn't seem to get him down. He's got some good friends that stick up for him too. Maybe you can invite some of his close friends over and try to help them bond and your son will know he has someone that doesn't think he's different. We live in a bigger community and there are a lot of differences between all the kids. So I don't think he sticks out that much. But I know what it's like to come from a small town and could imagine how cruel the kids could be if he was the only different person. Knowledge is the best tool.

I do have to admit, our household is a bit sarcastic anyway and we pick on eachother. I nick named my son Tomato for awhile. So I think that helped him realize the name calling really doesn't mean anything.

As far as the stinging skin, have you tried Aquaphor? That doesn't have anything in it that stings. You may want to use Aquaphor right after bath/shower and then follow up a little later with the other lotions to keep it moisturized. I think it's the small soares they get on their skin that makes the lotion sting.

Would your son be interested in setting up pen pals? Since they are the same age.

Good Luck.

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