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#9534 - 09/15/00 03:15 PM I Need a pep talk--can anyone help?
kristi3360 Offline
Member

Registered: 09/15/00
Posts: 50
I hope that someone can help me on this! I have a 20 month old son, Hayden, with Ichthyosis. I have been told a couple of different types--one was epidermal nevus and the other--ichthyosis hystrix. He was not born with any marks at all. Around 3-4 months old, we first noticed a place on his left knee that appeared to be ezcema. Pediatricians thought the same--however, nothing cleared it up. The place on his knee kept getting bigger and the dryness is on more parts of his body. Not any "scales" but thickness of the skin. Some places thicker than others. This scares me to death. I know that it isn't life threatening, however, it kills my soul for my little angel to have to have something wrong. Not to mention having something that not many people have a clue about it. We did attend the conference(me and my husband)
and I felt somewhat comforted after leaving. However, I was surrounded by people that are familiar with this skin disorder. I have been fine up until just the past few days. I don't know why, but, sometimes it hits me smack in the face and I just about can't stand it! I get so depressed about it. I feel like I am fighting a never ending battle(I know I am)! Every once in awhile, I will notice a new place that I haven't noticed before and I just want to cry. I wish I just had some more answers--I realize that time will tell. I just wonder why it wasn't present at birth and I wonder if and how much more is it going to spread. I wonder if there is anyone out there that can answer this. Boy, if there is one thing that can make you doubt your mothering skills----this is it! And I realize that most of it is beyond my control. I know that God will not lay more on us than we can handle--but, here lately, I sometimes wonder how I am supposed to. I dread taking him swimming, to the doctor, to church nursery--I have already backed out of his MOMS MORNING OUT program--due to the fact that I dread the questions. I know that they would have to change his diaper and I don't care to hear the questions. About the other activities--I will not ever hold him back from swimming or playing with the other children. But, it is like, I know that I am there to protect him. I have got to get strong about it because I DO NOT want Hayden to feel this way AT ALL. I want him to be strong. And, I don't want him to be embarrassed about it and it hold him back from doing anything in life. Sorry to ramble on and on--but, I am hoping you guys can help! Hope to hear back from someone soon.

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#9535 - 09/16/00 01:15 AM Re: I Need a pep talk--can anyone help?
marcsmom_dup1 Offline

Member

Registered: 08/12/00
Posts: 107
Loc: Wantagh, NY USA
Hi Kristi,

I know exactly how you are feeling, because I was there myself!

My son Marc was born a collodian baby. No one in the delivery room knew what was wrong with him. It took them 8 hours to get a dermatologist to come to the hospital to tell us what was wrong. Marc has lamellar ichthyosis. He spent 2 weeks in the intensive care unit waiting for the membrane to fall off. I cried when I left the hospital without him. When he finally came home, our ritual was baths and lotions and creams. I often wondered "why me? Why my son?"

I soon realized that I had to pull myself together and become strong for my son. My husband had a difficult time dealing with the situation in the beginning, but he too, became stronger. One thing I truly believe is that Marc was given to us for a reason. If we couldn't handle the day-to-day dealings with his skin, I don't think God would have chosen us to be his parents.

I attended my first F.I.R.S.T. conference in 1998. I cried the entire weekend. At that conference I finally realized that I wasn't alone. I saw people who have lived with ichthyosis all their lives and they were okay with who they were and what they were doing. I could do this!

I never chose to "hide" Marc for fear of questions from others as to what is wrong with his skin. I have been accused of leaving him out in the sun without sunscreen or people ask me if he was burned. I graciously explain (briefly!!) what is wrong. Someone at FIRST gave me the suggestion of handing out pamphlets that FIRST provides which explains about ichthyosis. This has been very helpful. Marc started to talk at an early age, and I have told him that he has "dry skin," and it is called "ichthyosis." He has been able to tell people what he has if they ask.

Marc is 3 1/2 years old now and is beginning to realize that his skin is different from mommy's and daddy's. One day he told me that he wanted my hand. I asked him why and he said because he didn't like his skin. I had to hold back the tears. I explained to him that his skin is special just like he is. God gave him his special skin because he is a special boy.

I feel that my job is to make Marc feel good about himself. My job would be the same even if Marc didn't have lamellar ichthyosis. It is so important for a child to grow up with a secure sense of self. That is a parent's ultimate goal. I want him to be able to tell people what is wrong with his skin. I want them to see the boy behind the skin because Marc has an amazing personality and sense of humor! I am hoping that when he enters Kindergarten, he will feel confident enough to stand before his classmates and explain why his skin looks the way it does. Once his peers get beyond the skin, they will see that Marc is just like them.

I teach Kindergarten myself, so I know how cruel the kids can be. Sometimes, however, it is the adults who are the cruelest. When Marc started nursery school last year, I was quite nervous. Would they accept my son? I am sure you could imagine my anxiety! I went to the director and provided her with literature from FIRST (teachers guide to dealing with children with ichthyosis), and this website. I then asked her if I could write a short note explaining to the parents of Marc's classmates what is wrong with his skin. The director thought it was a great idea. Once the note was sent home, I actually had a few parents thank me for doing that. It put them at ease to realize that it wasn't contagious (something every mom is concerned about). I found that being honest is the best route to take. I can't hide the fact that something is wrong with Marc's skin, so I decided to be open about it from the start.

I know it is sometimes difficult to deal with the stares and whispering that goes on when you go out with your son. It takes a while to ignore them, but it does get easier.

I also attended the conference in Philly. Marc was able to see other kids with ichthyosis and it was great. He knows that other kids have skin like his-they just don't live in our neighborhood. I found myself not crying as much at this conference because I was in a different place with myself than I was at the previous one. I had a better understanding about this condition and my son is growing and doing all of the typical boy things that a child with "normal" skin would do (everyone told me that he would, but I had to see it to believe it!! [img]http://www.ichthyosis.com/ubb/smile.gif[/img])I am also much more confident with myself-I can handle this and I feel that I am doing the best for my son.

Are there ever days when I wish Marc would wake up and all of the scale would be gone? Sure-but those days are happening less and less.

What I am trying to say, Kristi (if you're still reading this-sorry this is LONG!), is just take one day at a time. Things do get easier.

You can also join the FIRST Support Network. They will be able to connect you with someone you could talk to about any issues or concerns you may have. It is also a good place to vent.

I hope I was helpful. Take care and e-mail me if you want to "talk" further.

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

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#9536 - 09/16/00 07:40 AM Re: I Need a pep talk--can anyone help?
sonia Offline

Member

Registered: 08/22/00
Posts: 77
Loc: United Kingdom
Hi kristi,
My daughter Aiesha is 5 years old and she has lameller ichthyosis and I reckon that she's a stronger person because of what she has. I can't really say much because Denise has done an extremely good job of speaking for all the mothers! However, please email me at any time for any of your concerns.
Love to you and your baby,

Sonia.

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#9537 - 09/16/00 03:10 PM Re: I Need a pep talk--can anyone help?
Anonymous
Unregistered


Kristi,
I too am a mother of a baby with ichthyosis. He is the 3rd in my family to have aquired it through genetics. I grew up being tortured by other kids and adults as well who were insensitive and asked questions that I didn't want to answer.

By the way what my baby and I have is called EHK. What you described sounds similar to my child's case. I found out through genetic testing that he would have the condition, but when he was born he looked normal. I was born with blisters all over my body. My son got blisters only only parts of his body that were rubbed either by him kicking his legs and rubbing his heels on the isolette or by diapers. Now he doesn't have any blisters but he's getting skin build up on his inner/outer elbows, knees and dry peeling skin on his fingers and toes. His thighs and bottom are the worst because of the diapers rubbing his sensitive skin. Like you I don't take him out (until he has pooped) because I don't want people to ask questions or make comments about his "rash".
What have you been using on his dry skin? Right now I use A&D ointment and Aquaphore on him. I also put some Carmol 20 on his knees and cleared that up. His knees turn brown with the dry skin when he sleeps on his stomach.
I wish there was a private school that taught only kids with ichthyosis. I could have benefitted from that. But since that won't happen all you can do is educate your son so he can explain his condition. I find that it intriges people and they want to know more. As long as they know that it's not contageous, they're okay. But people will still try to offer you suggestions on how to treat it. That's what I hate the most. They'll say, oh use such and such lotion (as if I haven't already tried every lotion made).
Everything will be okay. You have the support of many people who live with the condition or who have children with it. If you have any questions or concerns feel free to e0mail me at lisarr457@cs.com
Take care.
Lisa

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#9538 - 09/26/00 03:19 PM Re: I Need a pep talk--can anyone help?
J_Bergher Offline
Junior Member

Registered: 09/26/00
Posts: 1
Loc: Los Angeles, CA, USA
Kristi -
I have a son who is now 13 who was born with EHK. It was quite a scare for us as he was our first child and was in an isolation nursery for 3 days until the skin biopsy confirmed his ichthyosis. We had to wear scrubs and masks to visit him.

I can relate to your concerns about his appearance and the comments and stares from strangers. With EHK there is a tendency for the skin to be thickened and brown on the joints--elbows, knees, wrists. My son experienced lots of stares, but what I found remarkable was he was able to get up in front of his class at the beginning of each school year for a brief explanation of his skin and the fact that he didn't like to be teased about it. In terms of rude comments, that pretty much took care of it. I can recall one instance in elementary school where a girl who was not in his class (nobody in his class teased him) made a comment on more than one occasion. I brought it to the principal's attention and she contacted the parent immediately.

The hardest part in my opinion, from a Mom's viewpoint, is the isolation and struggling with overprotectiveness. We've attended a local and a national FIRST conference and found that to be beneficial.

Feel free to e-mail me anytime, JBergher@econanalysis.com -- my thoughts are with you.

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#9539 - 10/27/00 08:05 PM Re: I Need a pep talk--can anyone help?
Lisa Z Offline
Member

Registered: 10/25/00
Posts: 14
Loc: Charlotte, North Carolina USA
Kristi & all the other Moms,

I'm not a mom, I'm a daughter with lamellar icthyosis who has the best mom in the world. I'm know she went through many of the anguished times, tears, fears & irritating questions from strangers just like you. Her daughter grew up & became a woman secure in who & what she is because of the love & support of her mom. A mom just like all of you are. Look forward to the future & know that these trying times will pass too & then the terrible teens set in!! I have to say in all honesty my mom got me through some pretty lonely times & I can never thank her enough. Because of her love & support I can honestly say I would not change my life, I would live it again WITH icthyosis. I wouldn't be who I am without it or her!
Moms, dads do what you do best - love them!

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#9540 - 11/02/00 08:42 AM Re: I Need a pep talk--can anyone help?
paula Offline
Member

Registered: 08/16/00
Posts: 20
Loc: bellevue,ne 68005
Kristi
My name is Paula and I am a mom too. I fully understand what you are going through my son Michael is two and he has Netherton sydrome Ichthyosis. It has been a really hard two years. He has been in and out of the hospital several times. I have had him prayed over and I have been told by several people that I need to treat him just like I do my other kids and not let the skin affect it I do find it hard though at times. But I have also found that The more I educatue people the better off for Michael and all of the other that have Ichthyosis. so please hang it there and know that God is watching you and is here for you everyday and will help you. if you want to email me you can at mom4mikeusa@home.com I hope that I helped and have a great day and enjoy the wonderful little boy that gave you and that he knew you could take care of. Paula




[This message has been edited by Laura Phillips (edited November 03, 2000).]
_________________________
Paula A. Wetterlund

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#9541 - 12/28/00 05:28 AM Re: I Need a pep talk--can anyone help?
Tanya Offline
Junior Member

Registered: 12/28/00
Posts: 2
Loc: Australia
Dear Mum,
Chin up....it is very hard to accept the things that is dealt to us in life....but you have to for the sake of Hayden! My son has Nethertons Syndrome and he is 2 and a half. It is simular to what your son has got but a bit different. I know what you are going through and feeling because i have been there and I am still going through it. Never give up and always stand up for yourself and your son. I have been abused, shunned by family and friends because of my son's condition. To me, my son is the world and no matter what he looks like on the outside, it is what is on the inside the counts. Please keep your chin up and remember that you are not alone....I do know that you are going through as a mother.


[Note: This message has been edited by marcsmom]

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#9542 - 12/29/00 04:57 PM Re: I Need a pep talk--can anyone help?
Teresa Offline
Member

Registered: 12/29/00
Posts: 6
Loc: Essex, England
Hi mums, I'm Chloe's mummy, she's 17 months old and has Nethertons - and boy, is it hard work or what. I was told when she was diagnosed that the first year would be difficult. Difficult was such a gentle word to use, its been a nightmare. Anyway, Chloe's well now, but things are still hard. I'm still trying to wean her onto our food, which she has no interest in at all, she's still on 4 month baby food. What I find most difficult is dealing with her itching and scratching. The constant greasing of her body, nappy rash, diarrheao, laundry washing etc wouldn't be such a chore if only she didn't itch as much as she does. She can't wear trousers/skirs and socks as she'll just sit on the floor pull the socks of and scratch, stopping her scratching makes her scream, cry etc so yes, things are heartbreaking but she is getting better. She can be distracted now and does play with toys. It is easier now, I'm sure many of you mums with older children will tell me. I just can't wait for her to be able to talk to me so I can help her and understand her more.
I thank God that she is here today and I will continue to pray for her healing. God bless you all, without asking him for the strength I have today I don't know how I would have coped.

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