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#13519 - 02/21/07 04:55 AM New born boy
invisible Offline
Member

Registered: 03/05/05
Posts: 53
Hi i am having ichthiosis vulgaris, but not my wife. We gave birth to a baby boy. She started severe itching in the last week of pregnancy and tried to induce in the last moment, but ended up in c section. The baby looks fine even hough his skin is peeling off. The new skin is looking good. Doctor said it is normal for the new born baby to peel off the skin.... Have anybody here gone through this kind of experience..is there any other symptoms to know if he is affected or not??

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#13520 - 02/21/07 06:18 AM Re: New born boy
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
I have heard that a lot of unaffected babies peel and/or flake the first month or so - that's actually what we initially thought was going on with our daughter when she was first born. The major indicator for us that it was something other than just normal new-baby peeling, was that it did not get better, even when we used cortisone cream. Also she was not gaining weight, but that's not all types of ich. [img]http://www.ichthyosis.com/ubb/smile.gif[/img] Congrats on the baby!
_________________________
Courtney
Mom to Julia

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#13521 - 02/21/07 04:34 PM Re: New born boy
luckelizard Offline
Member

Registered: 02/26/03
Posts: 190
Loc: Corpus Christi, TX, USA
I would say at this point in time not to worry.. When i had my first child (James) no one told me about babies peeling as soon as they are born.. and i broke down in tears because i thought i had passed down my skin to him. Fortunately enough not long after i called for the nurse.. she kinda came in laughing and said it was normal.. my son has normal skin and so does my daughter. but i was more prepared when my daughter was born.. there are alot of things that they should tell you about before you experience scary things like that.. I wouldn't know any signs of children born with ichthyosis.. sorry.. take care and keep us posted.

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#13522 - 02/22/07 12:34 AM Re: New born boy
new Offline
Member

Registered: 02/21/07
Posts: 5
Loc: Toronto, ON Canada
Hi,

I just signed up for the first time today. I've been reading posts on this website since I received my tripple screening test back that I had a 0.16 estriol and this could be the problem as my brother shows a similair skin condition. Both me and my brother went for genetic testing and found that we are both positive, I'm a carrier, and my brother was finally diagnoses after 30 years with x-link ichthyosis. (Not sure which kind). I just delivered a week ago to a beautiful baby boy whom showed no abnormal skin condition at birth, he started to peel and because I've never had a newborn at full term, (as my first boy was born more than two months prematurely, because I developed HELLP syndrome at 29 weeks and all tests were normal for him), I have not experienced the newborn peeling skin. It all looks normal, since my friend who also recently had a baby girl told me her baby looked exactly the same and not to put any lotions on as it slows down the newborn-peeling process. I did put on lots of aqueous cream the first week because of my major concern for dryness etc. His face was very red aswell as his body. Since I stopped the lotions, his peeling skin became much better and it is now very tiny little flakes, and also the redness dissappeard from his face and the new skin looks soft and tender just as it should.

My doctor just called this afternoon, giving me the results back from the umbilical cord genetic testing for x-link ichtyosis, and it is positive. He could not tell me how large or how small the deletion of the STS Gene is, and said he knows very little about this. He referred me to a dermatologist at Childrens Hospital who specialize in this condition, and hopefully we will get more answers. Could you please tell me, how your babys' skin resolved, if it did and how you treated it? Is it a sign of a very mild condition, or did it become worse later on?

Should I continue the aqueous cream? It may take a while before I get an appointment to see the dermatologist.

I would appreciate any information and advice. I was very surprised to have found a forum website on this topic, as my brother has been suffering a lot, and is at this point in his life where he completely gave up on his condition. I've tried to encourage him to also sign up on this site, to get advice and information, as the dermatologist here at Childrens' do not accept patience of x-link ichtyhosis older than 19 years of age.

I'm looking forward to your replies.

Regards,
Marie

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#13523 - 02/22/07 05:01 AM Re: New born boy
swebblie Offline
Member

Registered: 11/08/06
Posts: 48
Loc: Wollongong, Australia
Hi Marie,
First of all Congratulations on your baby boy. You must be so tired and so happy.

My 4 year old son has x-linked ichthyosis too. When he was born he did the full body peel, and his skin looked pretty normal except that it was dry. It took about 2-3 months before the scale on his body appeared, which was when winter started. He developed the bad scale on his scalp by 4 weeks of age.

It is important to keep him moisturized as it will reduce the scale and make his skin feel a lot better. There are lots of different creams available and some of the other mothers may be able to help you with a suggestion.(We have less choice in Australia.)

You will also notice that your little boy will not sweat very much if at all (this is the thing I noticed about my daughter, she sweats sooo much.(Ok, so she sweats the normal amount, but it just seams like so much in comparison.)). So anyway, you need to be careful that he does not overheat. Most boys who are affected with x-linked ich go very red in the face this is a good indicator that he is hot.

The last thing I can think of is that his testes need to be checked that they are both descended.
I hope all this information is useful to you.
Sarah.

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#13524 - 02/22/07 01:39 PM Re: New born boy
jrmiss86 Offline
Member

Registered: 06/07/05
Posts: 378
Loc: Marlton, NJ, USA
My son Alex also peeled at birth, but we were told it was the normal baby peel, and since now his skin just gets dry, not really scaley I tend to agree. We put lotion on Alex starting the first day that he came home from the hospital, we would have put it on him in the hospital as well, but the nurses wouldn't let us. Since he was born in the winter his skin was dry from day one, but it cleared up as soon as the weather got warmer.

Alex has had problems with undecended testicles but we were told that it was because of the kallmans not the icthyosis.

Heather
_________________________
Heather
Mom to:
Alex (xli and Kallmans - 2/3/05)
Liz (3/16/07)

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#13525 - 02/23/07 05:58 AM Re: New born boy
new Offline
Member

Registered: 02/21/07
Posts: 5
Loc: Toronto, ON Canada
Hi Sarah,

Thank you so much for your reply, I really appreciate it. I also have a 4 year old, but he doesn't have x-linked ichthyosis. My brother also goes very red in his face when he is hot, and can overheat very easily. How long did it take for your boy to peel off when he was a baby? I feel very sad for my little one as I really did not believe this could happen again, and was unaware of the genetic "link" that was passed onto me. I watched my brother growing up and dealing with this, he did not have the lotions they have available today and also did not get treatment other than lots of aqueous cream, and my mother always kept his skin moisturized when he was young. She used to put lots of vaseline on him, and he hated that, but it worked! He has other medical problems that discouraged him from continuing what my mom started, and his skin went from bad to worse, that is probably what is making me so very sad about this; seeing what happens if you don't treat it.

I got my appointment to see the dermatologist next week and will let you know what she said. I wish there was a cure for this. I actually found a document called "A model of corrective gene transfer in X-linked ichthyosis" (http://hmg.oxfordjournals.org/cgi/reprint/6/6/927.pdf)
it sounds very interesting. Let me know what you think.

It looks like his testes is in the right position, his pediatrician would've said something with his one week check up after birth if there was anything wrong, but I will let the doctor check again with his next appointment, thank you.

I will post again soon. Thank you for all the other replies aswell, and the welcome. I'm already starting to feel much better.

Regards,
Marie

Quote:
Originally posted by swebblie:
Hi Marie,
First of all Congratulations on your baby boy. You must be so tired and so happy.

My 4 year old son has x-linked ichthyosis too. When he was born he did the full body peel, and his skin looked pretty normal except that it was dry. It took about 2-3 months before the scale on his body appeared, which was when winter started. He developed the bad scale on his scalp by 4 weeks of age.

It is important to keep him moisturized as it will reduce the scale and make his skin feel a lot better. There are lots of different creams available and some of the other mothers may be able to help you with a suggestion.(We have less choice in Australia.)

You will also notice that your little boy will not sweat very much if at all (this is the thing I noticed about my daughter, she sweats sooo much.(Ok, so she sweats the normal amount, but it just seams like so much in comparison.)). So anyway, you need to be careful that he does not overheat. Most boys who are affected with x-linked ich go very red in the face this is a good indicator that he is hot.

The last thing I can think of is that his testes need to be checked that they are both descended.
I hope all this information is useful to you.
Sarah.

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#13526 - 02/23/07 04:35 PM Re: New born boy
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Dear Marie,
Hi! My name is Laura, I have 2 boys with x-linked ichth. and they both were/are affected differently with it. You may not see symptoms for a bit. When my oldest was a baby, he just looked like he had dry skin all over for a while, started around 3 months old, dry flakes all the time, then as he got older, the scales started appearing and turned brown...around 2 yrs old.
With my youngest, he was red all over at birth, very very red, and within days was cracking all over and peeling sheets of skin off....so his x-linked symptoms turned up right away. You will find a lot of advice and help here, this is a wonderful resource for us, literally a God-send. I hope you can direct your brother here, too.
Take care, keep us updated!
-Laura
_________________________
- - - - - - - - -
*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#13527 - 03/03/07 01:33 AM Re: New born boy
new Offline
Member

Registered: 02/21/07
Posts: 5
Loc: Toronto, ON Canada
Hi Laura, (this is my loooong story today...)

Thank you for your information, I'm probably going to be asking a lot of questions still. I really appreciate all the replies.

I just came back from my first dermatology appointment today, and I wish I had never gone. I gained more medical information regarding the diagnosis of my boy here at the board than I did from this doctor. I even received more information from my obstetrician who read it to me from a print-out that he got regarding x-link ich when he gave me my abnormal tripple screening test results back than I got from the "genetic counselors", who waisted me and my husbands WHOLE DAY, a few months ago. This dermatologist was less informative than the genetic counselors, so that makes my gyno an "expert" on x-link ich, which he has never seen before. Sorry, but I'm very upset today.

After waited two hours to see this doctor at Childrens Hospital, and a waiting room filled with naughty and screeming children, we finally went in to the "examination room" where we waited another half an hour.

My boy is only three weeks old today and is going through the baby-peeling process. Everything is still looking very normal at this point. I had to undress him and wrap him in his blanket waiting for this "well-known" doctor which we were referred to as one of the very best in this country - (maybe there is no one else who has heard of this problem to compare her with).

I cried for a bit on my husbands shoulder, who is so very positive and optimistic about our baby and everything. The long waiting and just being there at the dermatologist, as if something is "wrong" with my baby - just couldn't handle it anymore. At that point a "student doctor" arrived, "great" just what I needed - starting to ask questions like "so why are you here?" while she is holding my chart, with ALL the information in her hands - as if she is testing my sanity or what?
I said "well, I called my doctor's office to have them fax over the baby's genetic testing results that he is x-link ich poisitive and the pediatrician already send you the referral and all the baby's information, did you not receive anything?"
"Oh yes, I have it" she said. I told her that I will answer questions to the doctor.
She replied, "well, I am almost a doctor, because I will be finishing my exams early this year..." I did not need the sarcasm at that point and wished she would leave us alone. It made me feel as if the doctor was not planning to spend time with us assessing our baby etc. and sends a student in to ask all the questions so she doesn't have to? This happens a lot here in Canada when you go to see specialists.

I did not put any cream on my boy this morning so that the doctor could have a good look at his skin as the creams will just "hide" the scales and flakes, she did not examine his little body, just looked at his naked body on the examination table. She also said he has a heat rash, which I told her, no that was just baby acne that is starting to disappear from a few days ago, and little "red spots" are only showing now. She also did not know how to examine his testes either, she told us she did not know how. I asked her about the flakes that are starting to show on his scalp, and how I can treat it? she looked at me and said, well it is just a cosmetic thing, and that it doesn't bother him. She really did not know what else to say.

I asked her how severe his condition is, will it get worse, or better, etc? She said it will be the same as my brother's, because of the same sts deletion that was an easy answer - I said but my brothers ich looked completely different at birth, and she then told me, it is too early to tell how severe your baby will have it - she said that it looks mild - I still had many questions for her, but realized she doesn't have the answers...

She did not explain treatments with me, but she did gave me a brochure with all the names of creams that I can use...and to give him a bath every day and moisturize him right after.

She kept on telling me how this is only a cosmetic appearance, and that it does not hurt the baby at all, as if the appearance is all I'm concerned about. This really started to be frustrating as I know this, and grew up with a brother having to deal with this everyday for 30 years, and want to treat the condition in any possible way I can, and if there is better treatments available today.
Doesn't anybody want their baby and child want to look good? That is why a lot of people in general go and see dermatologists right?

She probably has not been affected by this condition and probably doesn't have children either. I know what other children can be like, and don't want my boy to feel any different from any body else and have this affect his personality or abilities to accomplish whatever he puts his heart on.

I was really disappointed with our visitation to the dermatologist today.

Thank you for reading.

Regards,
Marie


Quote:
Originally posted by LauraAnn:
Dear Marie,
Hi! My name is Laura, I have 2 boys with x-linked ichth. and they both were/are affected differently with it. You may not see symptoms for a bit. When my oldest was a baby, he just looked like he had dry skin all over for a while, started around 3 months old, dry flakes all the time, then as he got older, the scales started appearing and turned brown...around 2 yrs old.
With my youngest, he was red all over at birth, very very red, and within days was cracking all over and peeling sheets of skin off....so his x-linked symptoms turned up right away. You will find a lot of advice and help here, this is a wonderful resource for us, literally a God-send. I hope you can direct your brother here, too.
Take care, keep us updated!
-Laura

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#13528 - 03/04/07 02:44 AM Re: New born boy
sideshowbob Offline
Member

Registered: 10/23/05
Posts: 209
Loc: Midwest, USA
Marie,
I'm sorry you had such a rotten day. Ichthyosis is NOT just cosmetic, it can have serious health concerns for our children (depending, of course, on what type they have). You are absolutely right to be concerned, and I am so glad you are seeking out information to help your son.

Our daughter has lamellar ich, not x-linked, so I can't give you any real advice. You will love your son, no matter how he looks, but there will be days when dealing with his condition will wear you thin. Know that you can always vent here.
_________________________
4 year old daughter with CIE

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