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#10031 - 12/02/03 11:17 PM Re: New Mom and Member - My Story
SusieL Offline
Member

Registered: 10/17/03
Posts: 51
Loc: Raleigh, NC
Julie,

I am so sorry to hear about your precious Gordon. You and your family will be in my prayers. If there is anything else I can do, please feel free to email me suznlex@yahoo.com

Hugs and Prayers,
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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#10032 - 12/03/03 02:57 AM Re: New Mom and Member - My Story
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
jamprm, I want you to know that my family sends their prayers to yours. I am so sorry that you have been through so much. It is amazing how many lives Gordon has touched. Our thoughts and prayers are with you.

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#10033 - 12/22/03 06:14 AM Re: New Mom and Member - My Story
Yara Offline
Junior Member

Registered: 12/22/03
Posts: 2
Loc: Acworth,GA
Hello, my name is Yara and my daugther Camila has Ichthyosis. My husband and me are from Bolivia but Camila was born here in Virginia. As many of you at first we have very bad news, and we were so scared. we have no family around us, so we feel alone, scared and maybe confused. Because English is not our first lenguage and I was studing English when I got pregnat.
Thanks God Camila is so strong and her condition is imprubing a lot, I can see in the faces of the doctors every time we go to visit, they are so happy to see her and many of then said "she looks normal for us".
We use aquafor two times at day now, I still have some problems with her scalp, nothing seems to work but is not so bad. We send the biosy to the registry one year ago and still not have answers, we hope to here form then soon.
Camila is now 2years and six months old, and I think her condition help me more with my English that my clases in college.
Anyway as you see for my grammar I still need to work a lot in my English, but I can't wait to participate in this group and learn more to help my daugther.

Thank you for understand. And I wish you all of you and your families have your Merriest Christmas Ever.

Yara

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
_________________________
CAMILA'S MOM:)

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#10034 - 03/12/04 12:43 AM Re: New Mom and Member - My Story
twinmama Offline
Member

Registered: 09/20/02
Posts: 6
Loc: Cheshire, CT
Hi Susie - Your story sounds so much like mine with one exception...I had twins. One was unaffected and one was affected with ichthyosis. They had to take Jonathan (affected) away from me and transfer him to a NICU, because the hospital I delivered at did not have one. God had His plan for Jonathan, though. One of the world's leading dermatologists is based right out of New Haven, CT - Yale New Haven Hospital, which is only 30 minutes away from us. That was such a blessing to have such knowledge and such a vast amount of resources right at our finger tips. Jonathan is now 20 months old and is developing as well as his brother and as well as any active 20 month old boy should and could. Gratefully, his ichthyosis is mild (it is classified as "lamellar"). The product that we have found most useful is a product by NeoStrata called Neoceuticals Extra Strength Dry Skin Treatment. It does have hydroxyacids and glycolic acids in it, so it might not be appropriate for your young son. I think Jonathan was over one year old before we started using it on him and we mix it with Aquaphor or Vaseline, as full-strength will give him a minor irritation (clears up the scale miraculously, though!!!!). Please feel free to grieve as much as you need to. This is hard. I still find it hard...especially when his brother's skin is so pristine, pink and perfect ... and they grew in the same belly at the same time!!! Keep the faith...if you ever want to e-mail me personally, my e-mail address is crlmason@cox.net. God bless. Christine

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#10035 - 03/13/04 02:30 AM Re: New Mom and Member - My Story
pauline5 Offline
Member

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

Congratuations on the birth of your son Andrej. I know for one that my mother could relate soo well to your first hours and days with Andrej.

I think I was born a colodian baby also...The doctors immediately transfered me the the children's hospital and I spent the first month in Humidi Crib, with 24-hour care. Their predictions for me were either: To die within the next 4 weeks, or find a cure within that same timeframe...and neither happened.

They had no idea what it was, and this was back in 1964. they eventually diagnosed it to be Bullous CIE...now known as EHK...I stayed in hospital for a total of 6 months...and it was extremely hard for my mother to be at the hospital learning to care for me, while trying to bring my brother and sister up..they were 4 and 7 at the time...

I won't go into treatment recommendations, as you have had plenty already...But please be reassured that Andrej's skin will get tougher and stronger as each week goes by, as will his immune system...

I am now very independent, studying at University and hoping to succeed in a job interview next week...

I feel that people who have Ichthyosis develop very strong qualities in human values, which serves them well in adult life, despite their many taunts along the way...

Enjoy your son, as his unique nature develops...he will give you many years of joy...

Everyone around here has been fantastic to me, and to each other...amongst them all you will find the best solutions to make both you, your family, and your son's life a comfortable and happy one.

Hang in there, and take one day at a time.
Love Pauline.

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#10036 - 04/05/04 05:16 PM Re: New Mom and Member - My Story
adnickel Offline
Member

Registered: 08/21/03
Posts: 7
Loc: Seguin, Texas, USA
Susie-
Wow, I can really share that experience with you. Georgia was a colldian baby at birth and was rushed off to a different hospital within hours of her birth. The pediatrician at the small town hospital where she was born told us she would likely be deaf and have vision problems and to brace for the worst. Fortunately, we soon got referred to someone who knew what they were talking about. Georgia was in the NICU for a week and came home. The collodian finally peeled off and she began to look pretty normal. We have since learned she has relatively mild CIE. Diaper rash has been a BIG problem with her. Once it starts, it goes crazy and is very hard to manage. Our doctor prescribes us a steroid cream that really works well. Regular diaper rash treatments are useless. At 16 months, Georgia is a fairly normal looking child except for thick skin on her hands and feet, dry scalp and a tendency to look like she has a slapped face. It's quite manageable. I am still angry at how the first hospital treated us, it was a real nightmare. It's just that this disorder is so rare, most doctors have never seen it. My husband and I are like you, not feeling willing to risk having another icthy child. But we are older (I'm 38) and there are other risk factors too.
Good luck to you!

------------------

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#10037 - 06/28/04 10:01 PM Re: New Mom and Member - My Story
NADIA Offline
Member

Registered: 06/28/04
Posts: 7
Loc: UK
Hello there

I am part of a Bafta Award nominated production team who are making a program about 2 teenage sisters in the UK who have what is known as Harlequin Syndrome.

The sisters' disease is pretty rare in the UK and we wanted to express to them that they are not alone by involving a second family, dealing with ichthyosis, in the project to help highlight skin diseases more fully.

If you feel you might be able to help it would be great to talk with you. The documentary will be aired in the UK and on US cable. I am based in California at the moment. If you feel you might be able to help or even that you might be able to put me in touch with someone who could have a positive input then please contact me with either your email or a phone number.

My email is nadia.willan@itv.com

Look forward to hearing from you.

Best Regards

Nadia Willan
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
_________________________
Nadia - UK Documentary

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#10038 - 07/28/04 11:43 AM Re: New Mom and Member - My Story
Bare Carmen Offline
Member

Registered: 07/14/04
Posts: 56
Loc: Australia, Brisbane
Praise the Lord. Praise the Lord.

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#23803 - 02/07/09 04:18 AM Re: New Mom and Member - My Story [Re: jamprm]
TMPOL Offline
Member

Registered: 07/30/08
Posts: 44
Loc: Collingwood, Ontario, Canada

I am crying, thanks for the link. Myles was born May of 2007 - i never went back that far on the board.
thank you - and i will send out the cause on fb.



Edited by TMPOL (02/07/09 04:20 AM)
_________________________
Tara, Rene and Myles
Myles born May 22nd 2007
Lamellar Ichthyosis

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