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#10021 - 10/17/03 09:10 PM New Mom and Member - My Story
SusieL Offline
Member

Registered: 10/17/03
Posts: 51
Loc: Raleigh, NC
Hello, my name is Susie and I’m new to the world of ichthyosis and am very excited to have found this website!

If you would indulge me, I would like to tell my story. It will be nice to share it with others who can actually relate to what I’m saying and may have had the same (or similar) experiences.

My husband, Alexej, and I are 27 years old and have a 2 year old daughter, Emma, who does not have ichthyosis. My husband and I decided it was time to have another, so we got pregnant with Andrej, my son. (Pronounced Andre.) I had a wonderful, healthy pregnancy with no complications.

In the evening on August 20th our lives were turned upside down. My water broke, so we headed to the hospital, expecting to come home with a normal, healthy, beautiful baby boy. We were totally unaware of the genetic time bomb we both carried, and how it could affect our children.

My labor and delivery was quick and easy. (Thanks to a beautifully executed epidural!) Andrej was born within 3.5 hours, and his daddy got to help the doctor guide him out! It was then that we discovered something wasn’t right. Laying in my bed on the other end of the room, I could hear the doctors and nurses saying, “What is this?” “I’ve never seen this before?” “What is going on?” You can imagine my fear and confusion as they rushed Andrej up to the NICU for further care. (Andrej was a collodian baby and looked like he was burned from head to toe. His mouth was stuck open and his eyelids flipped out. His ears were small and pinned flat to his head as was his nose.)

No one at the hospital had ever seen this before. Alexej and I spent the first night in the hospital praying and crying and getting very little sleep. The next day a pediatrician and a geneticist came in the room and gave us the grave news. They had never seen it before, but based on their research, they believed Andrej to have one of three different diagnoses, and they were all fatal within the first week or two of life. We needed to prepare ourselves to lose Andrej. We were devastated. We called our families and they all came to the hospital to meet Andrej and say their goodbyes. My sister even flew in from California to be with us. Alexej and I took Emma into the NICU to meet her long-awaited brother and I had to say some of the most difficult words I’ve ever said. I told her how her brother was very sick and would not be coming home with us, that Jesus was going to take him to his house. Emma was very confused and didn’t understand why everyone was so sad. She was a sweetheart. “Don’t cry, Mommy. Don’t cry.”

That night we had Andrej AirEvac’d to the Children’s Hospital where a pediatric dermatologist could take a look at him and confirm the diagnosis. Alexej and I went home and wept and pled with God for our dying son. The next morning we went to the Children’s Hospital where we spoke with more doctors and nurses who had never seen this before. Finally that afternoon the pediatric dermatologist came in to see Andrej and we heard the best news of our lives! He told us about collodian baby, about ichthyosis, and that our son would live and have a relatively normal life. God had heard our prayers! As it happens, this dermatologist was very involved with F.I.R.S.T. as well. (The Foundation for Ichthyosis and Related Skin Types.) He had lots of experience with the disease and could say for certain that this is what Andrej had, and was able to narrow it down to CIE or Lamellar.

Since that day, Alexej and I have been reading and researching and preparing ourselves for our son’s future. His is 8 weeks old now and is the sweetest little boy. He gets very dry in a matter of a few hours, so we give him at least 2 baths a day and grease him up with Vaseline. He puts up with it all very well. He still has some collodian around his fingers and toes, and on his scalp. His eyes have resolved themselves and he closes them all the way now, as well as his mouth. Emma doesn’t seem to notice that he is any different than any other baby. She absolutely adores him.

This has been a hard few months, dealing with the death of our expectations with a newborn. We had anticipated having a tiny little one to hold and cuddle, that our families would be able to dote on, and that we could take out in public and hear everyone’s praises about what a cute little newborn we had. Instead, Andrej spent the first 3 weeks quarantined in an incubator in the NICU. We got to hold him only 30 minutes a day, and no one else was allowed to touch him. With the collodian, he looked pretty bad and so, in public, I was nervous about anyone seeing him, that they would think I had abused my son or something.

Things are starting to normalize now and we are getting accustomed to Andrej’s condition and are anxious to start trying some therapies.

I would love to hear some other parent’s stories. How many children do you have? How have you dealt with the family planning end of this? We have always imagined we’d have four kids, but with a 1 in 4 chance each time of going through this again… we’re not so sure anymore. How early were you able to start treatments with your children (other than plain moisturizers?) Are diaper rashes a chronic thing with ichthyosis? My son has had one for 5 weeks that just will not go away. It’s gotten much better over time, but we’ve tried everything and it still lingers…

Thank you for allowing me to jabber on…I look forward to meeting you all.
Susie
_________________________
Susie

Daughter, Emma born 9/2001 -unaffected
Son, Andrej born 8/2003 - has Lamellar Ichthyosis
Daughter, Tori born 3/2006 - has Lamellar Ichthyosis

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#10022 - 10/17/03 10:42 PM Re: New Mom and Member - My Story
rjbrown Offline
Member

Registered: 08/23/00
Posts: 39
Loc: henderson,ky,us
Good to see your post and how are handling your son's condition. As a 53 yr. old LI guy, I can tell you he should do just fine as he grows. My parents allowed me to try most anything and made no big deal of my condition. As a father and grandfather, I can assure you he should have a very normal life, just as any child should. Good luck, glad to help with any questions. Randy Brown

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#10023 - 10/18/03 01:42 AM Re: New Mom and Member - My Story
ShaunaJ Offline
Member

Registered: 07/29/03
Posts: 233
Loc: Ogden,Utah
Hello Susie

My name is Shauna and my daughter was born in 1998 with Lamellar ichthyosis. Ryley was in NICU for a month and we couldn't hold her till a week before she was ok to go home so I know what you went through and what you are going through now. I would goop Ryley up every 3 hours with a Aquaphor and purified water mixture. We used GenTeal eye drops for her eyes every 3 hours also. We also tried to keep her out of the sun for long periods of time becuase she doesn't sweat (we still have to do that even now). On her scalp we used Bakers P&S solution and neutrogena T-Sal shampoo. The shampoo I got at Walmart and the P&S was perscribed. She was always a happy baby and is still now a happy normal 5 year old. I have 2 other kids that don't have Ichthyosis.

Now at age 5 Ryley goes to an ENT every 30 days to have her ears cleaned. She doesn't sweat still so we use a cooling vest for when she is able to go out and play. We still use the P&S and T-Sal. She has a good self esteem and loves to mother any kid younger then her. People do stare and it used to bug me, but now I just look at them and say "isn't she beautiful". They either say yes and ask what she has or they are to embarrassed to say anything. We have her treatments down to a science. We use glycerin in the morning, Eucerin Plus through out the day and at night. Once a week I use Tazorac on her. On her feet I use a Tea Trea balm with moisterizing socks this helps her feet crack a little bit less. I am sure you will try many different lotions and find some that will work and some that don't . Don't lose hope it is all worth it. Ryley is a very specail girl and has been a blessing to my family. I wouldn't change a thing about her. Welcome to the board and good luck. Feel free to e-mail me anytime.

Shauna Johnson
_________________________
Shauna Johnson
Independant Consultant
Cookie Lee Jewelry
"Choose a job that you LOVE and
you'll never WORK a day in your life!"

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#10024 - 10/18/03 01:52 AM Re: New Mom and Member - My Story
Solomon Rumicha Offline
Member

Registered: 08/15/00
Posts: 49
Hi Susie,

Congratulation on your son and welcome to this wonderful site where you will learn how to care for your son than anywhere else. I and my wife went through everything you stated and dealt with it for 7 years. My son is in great shape since I joined this website and met all these wonderful people who post on this site. I give all the credit for my son's great condition to this site and the people. Believe me you are very lucky to find this website sooner and keep searching for all the answers to you questions whenever you get a chance. The other big help will be to know what kind of Ichthyosis your son has. From what you explained, it seems exactly the same as my son who has Lamellar. But you should go for biopsy and make sure the kind he has. The other thing you mentioned is about the Diaper rush. We dealt with the same situation and the skin doctor told us to use LOTRIMIN AF which you can find it over the counter in any store under foot care section for Antifungal and it works like a miracle. Whenever he got the rush, we applied to the affected area and after that no problem. Like I said, you will learn a lot of stuff from this board. Hung in there and every minute with him, you will be a very proud parent.
_________________________
solomon rumicha

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#10025 - 10/18/03 04:14 PM Re: New Mom and Member - My Story
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Welcome Susie!

I am 31 and have Lamellar Ichthyosis. For his diaper rash, you might want to try putting some aloe on the rash, and then his regular ointment. I wonder if you could lay him on a protected surface without a diaper on? When I have a rash or irritation of some sort, aloe underneath my regular ointment and open air tend to help a lot.

As to what people in public might say, I think Shauna's response as a mom is fantastic! What I have done is printed out some business cards on my computer that states I have Lamellar Ichthyosis. I thank people for their concern and let them know they can visit www.scalyskin.org for more information about ichthyosis and it would be greatly appreciated if they would donate to FIRST.

The other side of the card is a bit flip as I list answers to the most commonly asked questions

1) No, I was not burned
2) Yes, it's genetic
3) Yes, it can be painful at times
4) Yes, I see a dermatologist regularly
5) Yes, I use moisturizers frequently
6) No, it's not contagious for if it were, I wouldn't be in public

My husband and I carry these cards in our wallet, especially when we are in an area we don't normally visit. Even though we live in a very large urban area, most folks have gotten used to seeing me at the places I normally go.

Big hugs to you and your family. It's so very nice to meet you [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#10026 - 10/18/03 07:49 PM Re: New Mom and Member - My Story
Angel Offline
Member

Registered: 09/17/02
Posts: 94
Loc: Ontario, Canada
Hi Susie!
Congratulations on the birth of your son! From my own personal experience, I can tell you that finding this website and especially this bulletin board, is the best thing that could ever happen. The people on this board are so supportive and helpful. I would not have been able to make it through this past year without them.

I have two daughters, aged 10 months and 2 years old, who both have Ichthyosis. As with your son, they have narrowed it down to Lamellar or CIE. Although I'm sorry that you had to go through the emotional roller coaster ride, initially, you are lucky that they were able to properly diagnose your son so quickly. We live in a fairly small town, with a population of only 26,000, and although my daughter had obvious signs at birth and throughout her first year of life, I was not able to get a referral to dermatologist until her first birthday. Luckily, this dermatologist, who was from a larger nearby city, was able to diagnose her immediately.

I can completely relate to the feelings that you have expressed. As time goes on, I'm sure that you will experience a myriad of additional emotions, as well. This bulletin board has been a great source of advice, but also a place where you can express your emotions. I have a lot of wonderful friends and family members in my life, but no one can understand my fears, trials or emotions better than other moms of children with ichthyosis. In addition, I learn a lot from the adults on this bulletin board who have lived with ichthyosis. I am learning to deal with my daughters' condition, but it has taken a lot to get to this point and I still have bad days. In one respect, I am so thankful that they do not have a fatal disease, but in another, I am so sad for them. I constantly worry what the future holds for them. Some of the posts on this bulletin board give me great hope for their futures, but others make me so very sad. I have never considered myself to be a very strong person, so I worry how I will be able to support my children without breaking into tears. When I first posted my story on this bulletin board, just over a year ago, I had a wonderful response from another mom. She told me that God only gives us what we can handle. These words have given me strength and I pass them on in the hope that they do the same for you.

You asked us to respond about family planning. As much I do believe that God only gives us what we can handle, I also believe that things happen for reasons that at the time we don't always understand. When my oldest daughter was only 9 months old, we found out that I was expecting again. My husband and I were dumbfounded and wondering how we were going to do it. Our second daughter was born when our oldest was only 15 1/2 months old and although it has been tough, it was the best thing that could have happened. I didn't plan on getting pregnant, plus I wasn't even aware at the time about ichthyosis, so I didn't have the opportunity worry about whether or not we would have another child. Had I known, I honestly don't know whether I would have had decided to have another child. With 1 in 4 odds of our children have ichthyosis, our 2nd daughter was also born with it. Her condition, though, is not as severe as her older sister. The choice is definitely a personal one, but perhaps the insight from others on this bulletin board will assist you in the future.

As for treatments, I got the okay to use the lactic acid cream on my youngest daughter when she was only a few months old, but I would check with your doctor. I used the 12% lactic acid cream on my oldest as soon as she was diagnosed (1 year old), but we started our youngest off with a 6% one. She is 10 months old now and we just started using the 12% on her. Others apply it to wet skin, but I only apply it to their dry skin, on the advice of the dermatologist. I only bathe them twice a week and put Uremol 10 on them after their baths. Sometimes, I put glycerin on them after the bath. I bathe them in a sea salt bath that has baby oil added to it. I am still trying to find something that works well on their scalps, though. I am currently using Tea Tree oil shampoo, but am finding it is not very effective anymore.

Also, neither of my kids have ever had a diaper rash, so I am not sure if it is related to the ichthyosis.

I had so many questions at the beginning and went through so many different emotions. If you ever have any questions or need to vent, please feel free to email me anytime. I hope that I can be of some help to you, as the other moms on this bulletin board have been to me.

Angel

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#10027 - 10/19/03 06:35 PM Re: New Mom and Member - My Story
Veronique Offline
Member

Registered: 07/13/03
Posts: 24
Loc: Rheden, the netherlands
Your story is very similar to our story.
Our daughter Karlijn (also our second child, her sister being 20 months older) also was born a colodionbaby. And to us the doctors told us 'to prepare for the worst'(as if you can!). Luckily the dermatologist could reassure us the day after. He happened to be the leading dermatologist on Ichthyosis in our country (how lucky can you be, when you least expect it), so he was quite sure it was Ichthyosis, but the EHK kind.
The first months where the hardest. I find her condition has improved a lot now Karlijn is 20 months old herself. We had to explain Karlijn hadn't been in a fire for i don't know how many times a day. But i'm glad we always did, because (almost)everybody in the village we come across knows what she looked like at first and assures me she looks great now. (which she does. Apart from her scaly skin she is a very pretty girl).I even go swimming with her once a week since she was 4 months old and the collodion had disapeard. She loves it and is treated just the same as any other kid, altough after the lessons some 'stranger' who doesn't come to the pool reguarly may look a little puzzled. When they don't ask I simply ignore them and have fun with my daughter.
I don't have a lot of experience on rash with Karlijn. She only had it for a very brief period, but she was sensitive for the conservation agents used in normal zinc-lotions. When we used a lotion without conservationagents the rash was over in just two days. Now whenever she gets a little red, we use the lotion for a couple of times and it's gone.
KArlijn had a problem wearing disposable diapers though. We now use cotton diapers with fleece liners and covers, which is great for her skin. For the last half year her skin has improved that much that we use diposables for the night times now.
On the whole the caring for her skin gets easier day by day. Especcially now she begins to understand the procedure.
So cheer up, better days are coming.
_________________________
Veronique
Maaike and Karlijn

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#10028 - 10/20/03 09:56 PM Re: New Mom and Member - My Story
Alyssa Offline
Member

Registered: 08/12/03
Posts: 16
Loc: Roselle, IL USA
I felt the need to post, mainly because this topic is so pertinent to a conversation I had with my grandma just this weekend over breakfast.

My mom has definitely been though a lot. But thankfully, I'm very excited to say that she's now responding very well to Soriatane - and is actually sweating!

My mother was born a collodian baby back in 1945. Those days, hardly anything was known about ichthyosis. Upon her birth, doctors told my grandparents not to expect my mother to live past her first birthday. Once my Mom proved them wrong, doctors then recommended to put her up in a home, because my grandparents would never be able to care for her by themselves and 'society would never accept her'. I just can't believe how quick doctors were to give such horrible recommendations like that back then.

My grandparents obviously raised my mom themselves, along with my aunt and four uncles. Since doctors didn't exactly know what was wrong with my Mom, they 'tested' horrible medicines and procedures on her. She also was not allowed to attend a normal public or private school - but never felt 'not normal'. My aunt and uncles definitely looked out for her, and treated her as any sibling would. There is so much love in our family, and I know it's partially because of my Mom's condition and how it brought everyone together for her. My grandparents always thought of my Mom as a blessing.

[This message has been edited by Alyssa (edited October 20, 2003).]

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#10029 - 10/27/03 02:51 AM Re: New Mom and Member - My Story
mikesmom Offline
Member

Registered: 10/26/03
Posts: 8
Loc: bellevue ne usa
Hi Susie,
Boy is this story fimiliar to me I went through the same thing and heard the same words. Michael is my son and he was sent home to die at three months old he just turned 5 and started Kindergarden. I would love to share Michael's whole story with you and you can email me at mom4mikeusa@yahoo.com


Quote:
Originally posted by SusieL:
Hello, my name is Susie and I’m new to the world of ichthyosis and am very excited to have found this website!

If you would indulge me, I would like to tell my story. It will be nice to share it with others who can actually relate to what I’m saying and may have had the same (or similar) experiences.

My husband, Alexej, and I are 27 years old and have a 2 year old daughter, Emma, who does not have ichthyosis. My husband and I decided it was time to have another, so we got pregnant with Andrej, my son. (Pronounced Andre.) I had a wonderful, healthy pregnancy with no complications.

In the evening on August 20th our lives were turned upside down. My water broke, so we headed to the hospital, expecting to come home with a normal, healthy, beautiful baby boy. We were totally unaware of the genetic time bomb we both carried, and how it could affect our children.

My labor and delivery was quick and easy. (Thanks to a beautifully executed epidural!) Andrej was born within 3.5 hours, and his daddy got to help the doctor guide him out! It was then that we discovered something wasn’t right. Laying in my bed on the other end of the room, I could hear the doctors and nurses saying, “What is this?” “I’ve never seen this before?” “What is going on?” You can imagine my fear and confusion as they rushed Andrej up to the NICU for further care. (Andrej was a collodian baby and looked like he was burned from head to toe. His mouth was stuck open and his eyelids flipped out. His ears were small and pinned flat to his head as was his nose.)

No one at the hospital had ever seen this before. Alexej and I spent the first night in the hospital praying and crying and getting very little sleep. The next day a pediatrician and a geneticist came in the room and gave us the grave news. They had never seen it before, but based on their research, they believed Andrej to have one of three different diagnoses, and they were all fatal within the first week or two of life. We needed to prepare ourselves to lose Andrej. We were devastated. We called our families and they all came to the hospital to meet Andrej and say their goodbyes. My sister even flew in from California to be with us. Alexej and I took Emma into the NICU to meet her long-awaited brother and I had to say some of the most difficult words I’ve ever said. I told her how her brother was very sick and would not be coming home with us, that Jesus was going to take him to his house. Emma was very confused and didn’t understand why everyone was so sad. She was a sweetheart. “Don’t cry, Mommy. Don’t cry.”

That night we had Andrej AirEvac’d to the Children’s Hospital where a pediatric dermatologist could take a look at him and confirm the diagnosis. Alexej and I went home and wept and pled with God for our dying son. The next morning we went to the Children’s Hospital where we spoke with more doctors and nurses who had never seen this before. Finally that afternoon the pediatric dermatologist came in to see Andrej and we heard the best news of our lives! He told us about collodian baby, about ichthyosis, and that our son would live and have a relatively normal life. God had heard our prayers! As it happens, this dermatologist was very involved with F.I.R.S.T. as well. (The Foundation for Ichthyosis and Related Skin Types.) He had lots of experience with the disease and could say for certain that this is what Andrej had, and was able to narrow it down to CIE or Lamellar.

Since that day, Alexej and I have been reading and researching and preparing ourselves for our son’s future. His is 8 weeks old now and is the sweetest little boy. He gets very dry in a matter of a few hours, so we give him at least 2 baths a day and grease him up with Vaseline. He puts up with it all very well. He still has some collodian around his fingers and toes, and on his scalp. His eyes have resolved themselves and he closes them all the way now, as well as his mouth. Emma doesn’t seem to notice that he is any different than any other baby. She absolutely adores him.

This has been a hard few months, dealing with the death of our expectations with a newborn. We had anticipated having a tiny little one to hold and cuddle, that our families would be able to dote on, and that we could take out in public and hear everyone’s praises about what a cute little newborn we had. Instead, Andrej spent the first 3 weeks quarantined in an incubator in the NICU. We got to hold him only 30 minutes a day, and no one else was allowed to touch him. With the collodian, he looked pretty bad and so, in public, I was nervous about anyone seeing him, that they would think I had abused my son or something.

Things are starting to normalize now and we are getting accustomed to Andrej’s condition and are anxious to start trying some therapies.

I would love to hear some other parent’s stories. How many children do you have? How have you dealt with the family planning end of this? We have always imagined we’d have four kids, but with a 1 in 4 chance each time of going through this again… we’re not so sure anymore. How early were you able to start treatments with your children (other than plain moisturizers?) Are diaper rashes a chronic thing with ichthyosis? My son has had one for 5 weeks that just will not go away. It’s gotten much better over time, but we’ve tried everything and it still lingers…

Thank you for allowing me to jabber on…I look forward to meeting you all.
Susie
_________________________
Paula A. Wetterlund

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#10030 - 12/01/03 10:34 PM Re: New Mom and Member - My Story
jamprm Offline
Junior Member

Registered: 10/21/03
Posts: 2
Loc: us army europe
Hi, Susie

I started crying when I read your post. I had a boy, Gordon Edward, Born August 20th 2003. He too was collodian, and we are still waiting for biopsy results to confirm harlequin. Labor was too dificult for him and his heart stopped before I delivered.
You have a precious gift, I understand how hard it must have been to tell your daughter. I had a 3 and 7 year old at home waiting for me to bring their brother home. It has been a very difficult time but we are doing well and my son has decided he wants to be a genetic sceintist so he can find the problem and fix it. too sweet. I hope Andrej is doing well and your family will be in my prayers.

julie
_________________________
jam

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