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#9858 - 09/20/02 06:29 PM Twins--one with LI, one unaffected
twinmama Offline

Registered: 09/20/02
Posts: 6
Loc: Cheshire, CT
I would like to hear from anyone who could be dealing with a similar situation. I gave birth to twin boys on June 25,2002. One is unaffected by ichthyosis, the other was diagnosed with lamellar ichthyosis immediately upon birth. I wonder about so much...will the unaffected twin be jealous of the extra attention we have to give to his brother? Will he tease his brother? I almost think it would be easier (maybe that's not the right word...) to have both of them with the same condition. How should I answer when Jonathan (I'll start using their names; Jonathan is the twin with icthyosis, David is unaffected) asks how come his brother looks different from him and why did he have to be the one to get this condition. Maybe I'm thinking too hard. I'm definitely having a difficult time processing all of this and looking for any kind of wisdom and insight anyone can give me. Thanks for taking the time to read my post.

Twin Mama

#9859 - 09/21/02 02:30 AM Re: Twins--one with LI, one unaffected
pauline5 Offline

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

Firstly congratulations on having twins...I am an adult with EHK, I don't have any children, but as the youngest sister, who has a brother and a sister, I can only tell you how it was for me growing up....My brother and sister were extremely protective of me and there was no teasing whatsoever. Don't forget that having them at the same time may be a bonus, because they can help each other and have a very special bond, as twins often do...If you can just explain to David that his brother needs extra care so that you can ensure he has a healthy and productive life, he should be fine....and as I said, you will find that David should be much help to you and his brother....

I was very close to my brother as he is only 2.5 years older than me, but my sister is 5.5 years older, and I had more difficulty bonding to her because she was always out with her friends, and I was stuck at home with blisters and infections ect....My sister has had jealousy of my attention, for various reasons......the age difference may have played a part in that....

Regards how you explain things to Jonathan, I will ask my mother how she explained stuff to my siblings....but I wouldn't worry too much if I were you, as I said they should have a very special bond, and they will look out for each other....Don't worry, they will give each other unconditional love....

Take care
Regards Pauline.

[This message has been edited by pauline5 (edited September 20, 2002).]

[This message has been edited by pauline5 (edited September 20, 2002).]

#9860 - 09/22/02 03:39 PM Re: Twins--one with LI, one unaffected

Twin Mama,
I was just wondering if your boys are identical twins? My first thought was obviously not but what do I know. I don't what to tell you about how to explain to your boys why one of them has it and why one doesn't until they are old enough to understand genetics and how things work. For now you can explain it to him anyway you please, "god made you special" is one I heard alot. I did talk to a father of an EHK child at the last conference and even though his children weren't twins and the one with EHK was younger he found a unique way of dealing with it. He(I should say they) have all there special lotions for there son who has Ichthyosis, and they also buy some regular lotion for their older son who doesn't have EHK. When it comes time to apply the lotions they apply the medicated lotions to the effected child and the regular lotion to the other child. Making them both feel like they are being treated the same and that no one is extra special. Now that they are getting older the child without Ichthyosis can put on his own lotion and then he helps mom put the medicated lotions on his baby brother. This serves as a dual purpose, it shows one child that everyone is included and equal while at the same time showing him that his brother needs special care that he can help with. Good luck,

#9861 - 09/24/02 01:30 AM Re: Twins--one with LI, one unaffected
Chandra Offline

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
I'm a middle child and my siblings never seemed to be jealous of me over my skin. Maybe it's because I'm the middle child [img][/img]

This post, as normal for me, is rather long, and I've brought up a few extra points. Take or leave what you want, and I promise I won't be offended. First off though, I haven't heard of anyone having twins with ichthyosis, let along twins where only one baby has it. That doesn't mean it hasn't happened, and I bet if you contacted F.I.R.S.T. at they could get you in touch with anyone that has had this come up.

My sibs are and were either very protective of me, or since they're younger than I am it's just something that's always existed to them. The younger ones haven't really questioned it other than asking how I handled being teased. I believe my younger sister's Grandma said "God made Chandra that way," which is a good answer for a lot of folks. But for my little sis, that didn't work very well and really upset her as she thought it was a darn mean thing to do to me!

Yes, there will be a day when David and Jonathan realize they're different, but frankly that day probably won't happen until another child or adult points that out to them and they (the boys) finally notice it being pointed out.

David most likely will be quite protective of Jonathan, even if he IS jealous. That's pretty much what happened with me and my older sis. She did beat up on me a lot, but by golly as far as she was concerned, she was the only kid allowed to beat up on me! Then again, David may not ever be jealous and maybe Jonathan will be jealous of him! There's no way to predict. I think the dual lotion idea is a good one, and in fact I've heard of entire families having a "lube time" where all parents and children put on lotion so nobody feels left out. This family has two children with ichthyosis.

In my opinion, it is ok for a parent to say they don't know the answer to a question a child asks as long as it's followed up with "and this is how we'll deal with it because it's healthiest for us, safest, kindest, etc. and so on." If there's not an answer that you feel you can give your child, then it's ok to say "I don't know."

I do think however, that for the children to learn what the condition is called, and to be able explain it in their own words is one of the best things you can help them do.

By the time your children are six years old and in kindergarten, or even much younger, they will understand when someone comes up to you or your spouse and asks what happened to Jonathan. Because people will ask when you're not around, your child needs to be prepared. The things people used to ask me before I looked physically mature were absolutely appalling, and they would never and have never dared to ask me as an adult.

You will be doing both Jonathan and David a great service if you tell the questioner to ask the child they want to know about. Also teach your children that they don't have to answer if they don't want to, as frankly, it's nobody else's business but your family and the children's health care provider, and eventually the children's educators. This goes for you too, you don't have to answer every Tom, Dick, and Harry's (or Harriet's question). One thing I do is carry business cards around with me I printed up on my computer. The front side says what the condition is, and has some of my top answers to questions like
1. No, I wasn't burned in a fire, it's Lamellar Ichthyosis
2. Yes, it's genetic, yes I was born with it

You get the idea. The back side has F.I.R.S.T.'s mailing address with a request for donations. Frankly, people get upset when you don't answer as they think they were trying to be helpful. They're not, they're just being nosy, if they truly were trying to be helpful, they'll donate to F.I.R.S.T. so more research can be done to find a cure or at least things to help our skin feel better!

Ok, how's that for a response? I'm sorry it's so long! I know it's overload in many ways and contains a lot of things that you might not have to think about for years, but on the other hand, when you're trying to get crying babies into the car and get home before the ice cream melts in the grocery bag, whipping out a business card and handing it to someone is really helpful!
I am female, and was born in 1972 with Lamellar Ichthyosis.


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