Page 1 of 2 1 2 >
Topic Options
#9887 - 03/11/03 01:31 PM Unsure if new baby has Ichthyosis
Angel Offline
Member

Registered: 09/17/02
Posts: 94
Loc: Ontario, Canada
I have posted a few topics in the past regarding my 18 month old daughter who has Lamellar Ichthyosis. I gave birth to another beautiful (I'm not baised!!!)daughter in December. She was overdue and has had dry skin since the day she was born, but we are not sure if she also has Ichthyosis or if she just has dry skin from being overdue. We don't plan on taking her to the dermatologist until she is a little older, as I don't plan on putting Lac-Hydrin on her skin this young anyways. I am currently just moisturizing her skin. Since the only experience I have is with a child with Ichthyosis, I'm not sure if this is just typical dry skin. She seems to be really dry in the same problem areas that my oldest daughter is; wrist and ankle creases, armpit creases, ears, insides of thighs and her scalp. I am just not sure if these are just typical dry areas of the body. Other similarities between the two girls that have sent up red flags for me are the vertical lines on the inside bottom parts of their fingers, the thickened skin on the insides of the thighs (slight in my youngest), and the fact that both girls cheeks get really red when they are a little warm. My new daughter did not have the peeling skin on her hands and feet that my oldest did, but her face had a slight shellacked appearance and has been peeling since she was born. My youngest daughter's skin also is not as dry as my oldest daughter's is. The other difference is that the moisturizing lotion seems to help my youngest a little more than it did my oldest. We didn't know my oldest daughter had Ichthyosis until she was 1 year old, as the doctor kept brushing us off, so we were just putting moisturizing lotion on her constantly. A minute after putting the moisturing lotion on my daughter, her skin would be dry again. This is not the case with my youngest. The moisturizing lotion does seem to work for a few hours. If anyone has any insight into this, I would appreciate it. I am especially curious if the lines on the fingers and the thickened skin on the insides of the thighs are indicators that my youngest also has Ichthyosis. Thanks.

Angel

Top
#9888 - 03/11/03 03:04 PM Re: Unsure if new baby has Ichthyosis
Anonymous
Unregistered


Angel,
Have you had your oldest daughter tested to see exactly what kind of Ichthyosis she has? It sounds to me like your youngest child may have a milder form of the same kind of Ichthyosis. I've never heard of someone having children that have two different kinds of Ichthyosis. My advice is, take her to a good dermatologist and have her tested so you know for sure what you are dealing with. It doesn't mean that you have to start putting Lachydrin on her if she tests positive for Ichthyosis but you will know for sure what you are dealing with. I can't believe in this day and age, combined with the fact that you already have a child with Ichthyosis, that your doctor hasn't wanted to test her to know for sure. I've also never heard of an overdue baby having dry skin, what is the reason for that and why would it continue? If you haven't already, have both of your children tested to see if and what kind of Ichthyosis they have.
Keith.

Top
#9889 - 03/11/03 03:27 PM Re: Unsure if new baby has Ichthyosis
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Ditto what Keith said. It sounds like your newborn just has a milder version. And it's not uncommon for folks with the same type of ichthyosis to respond differently to treatment, either. Good luck
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

Top
#9890 - 03/13/03 04:04 AM Re: Unsure if new baby has Ichthyosis
AdamsDad Offline
Member

Registered: 04/01/02
Posts: 42
Loc: Atlanta, GA USA
The only thing I can add is that an overdue baby (post-mature in medical terms) may have peeling and somewhat "funky" skin at first. This is due to the extra moisture they'd absorb while still in-utero. When Adam was born, the OB first thought he calculated the due date wrong. Adam was had big white blotches and some peeling skin. Unfortunately, the due date was correct. In any event, if this was the case with your baby, I believe it would have corrected itself long before now.

Top
#9891 - 03/13/03 07:25 PM Re: Unsure if new baby has Ichthyosis
Angel Offline
Member

Registered: 09/17/02
Posts: 94
Loc: Ontario, Canada
Thank you for your advice. I'm not sure why my doctors have taken such a laissez-faire attitude towards my daughter's condition. It has been this way since she was born. The skin on her hands and feet was peeling off and although my family doctor thought to call in the pediatrician, once the pediatrician dismissed it as dry skin, it was very difficult to get anything done about it. It took a year of badgering my family doctor to get a referral to the dermatologist. I just knew it was something more than just dry skin. I'm not sure if it hasn't been as obvious with my new baby or if I am in denial. With 1 in 4 odds, I am finding it difficult to accept that I have two daughters with ichthyosis. I was just starting to come to terms with my oldest daughter having it. When I was pregnant, I can remember thinking about whether or not it would be better for this baby to have ichthyosis. Of course I did not want her to have it, but part of me didn't want my oldest daughter to be alone in her struggle. I didn't want her to resent her sister for having normal skin. Now that there is a possibilty they both have it, my heart just breaks for them. My oldest daughter was never "tested" for ichthyosis. The dermatologist just looked at her and knew what she had. This after being told for a year that it was just dry skin and that she would outgrow it! I guess I can't really blame the doctors. We live in a town with a population of only 30,000 and they have had no experience with it. The dermatologist, on the other hand, practices in a much larger city. The dermatologist did not perform any tests on my daughter. She determined that she had lamellar ichthyosis because of certain criteria, which included the condition of her skin at birth, the type of scales and the location of them. She recommended I put Lac-Hydrin on my daughter twice a day and see her again in one year. That was it. I should take my youngest daughter to the dermatologist but if applying the Lac-Hydrin cream is the only recommendation she makes, I see no point. I take care of my youngest daughter's skin the same way I do my oldest daughter. I will end up taking her. I think I just had to come to terms with the fact that she does have it. Now that I have been able to vent a little and think about the situation, I do realize that she more than likely has ichthyosis. Thanks for the replies to my post.

Top
#9892 - 03/15/03 09:52 PM Re: Unsure if new baby has Ichthyosis
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
lol I read that you said you found it difficult with one in four odds..do you see my screen name..mom of three x linked??? My odds were boy affected, boy unaffected, girl unaffected carrier, girl unaffected. That means one in four to me! Well, three x linked boys later, and finished by the way..they all have it to a different degree. I treat each one of them differently due to their individual condition, but they all have it. they all have it to different degrees on the scalp, one of my boys needs treatment daily, the other bi weekly. scaling is different too, location and severity. AND TG for that, I am busy enough as it is keeping them hydrated and scale free! lol I would treat it as needed, and if it gets worse see a derm. Be grateful that they are at different degrees of severity.

Top
#9893 - 03/16/03 01:07 AM Re: Unsure if new baby has Ichthyosis
Margaret Offline
Member

Registered: 10/14/02
Posts: 42
Loc: Virginia
Hi Angel,
All I can say is that I'm 15 and have Netherton Syndrome. Don't feel bad for your daughter, because even though yeah, it does suck sometimes, in the long run, it has made me stronger emotionally, and I can appretiate the little things in life, and it keeps me in perspective. Good luck! [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Top
#9894 - 03/16/03 01:23 AM Re: Unsure if new baby has Ichthyosis
pauline5 Offline
Member

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

Please try not to worry too much.....Margaret is sooo right.....Things might be tough for us during our childhood....but I guarantee you that we are much more compassionate people when we grow up....

Sometimes adversity is a good thing, because it keeps the person grounded, and appreciative of how lucky they truly are when they watch the world events, and much poverty and famine....

I don't mean to minimise how you are feeling right now, believe me, my mother had a very hard time when I was little....but she is so proud of me now, as to my determination and giving nature....

My advice is to just take one day at a time, and do your best for all your children...and they will be just fine....and be proud of their skin and who they are no matter how mild or severe their skin is....

It doesn't really matter deep down....Just the fact that you are writing to us for advise, shows that you want the best.....

Oh, regards the dry skin, have you tried bathing your daughters in lots of salt....It really helps lift any excess skin, and helps keep moisture in, and prevent drying out during he day.....But for it to be most effecive you need about 1 cup of salt....

Take care
Pauline.

Top
#9895 - 03/16/03 01:53 AM Re: Unsure if new baby has Ichthyosis
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
Threerxli,

Not being a parent myself, I can only imagine your frustration of having to take care of three children with ichthyosis. But if you have read my postings, you know where I am coming from.

Midatlantic winters can be harsh. If your children's condition worsen during the winter and improve during the summer, and if you have the resources or inclination to relocate, you may want to think about South Florida. The milder climate should have a beneficial effect. Not to speak facetiously, but if money is no object, you may want to think about some isle in the Carribean. That climate would even be better.

Ditto for Angel. Does ON stand for Ontario? My goodness, your children will benefit greatly if they can live in a warm climate that allows them to sweat, which in turn will clear much of the scales. For both comfit and appearence, please examine your options of relocation.

Even if relocation is not feasible at the moment, keep it in mind and think hard about it.


------------------
Don't ever lose hope when
there is a promised land, and "sweat" dreams
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

Top
#9896 - 03/16/03 02:38 AM Re: Unsure if new baby has Ichthyosis
Angel Offline
Member

Registered: 09/17/02
Posts: 94
Loc: Ontario, Canada
Thank you, everyone, for your replies. This bulletin board is a great forum to give and receive information, but also sometimes just to express your feelings. Just being able to write about fears, frustrations, etc. helps with the day to day battle. I didn't mean to sound like I was feeling sorry for myself and my children. I do realize that there are far worse things that they could have to endure. It is just that being a mother, you don't want your children to have to endure ANY hardship. I was especially glad to hear from Margaret and Pauline about being stronger people as a result of having ichthyosis. Thank you also, Pauline, for the advice about bathing my daughters in salt. Just regular table salt? I appreciate the information. Actually, does anyone have any advice on how to remove the thick skin from the wrists. I just can't seem to get this skin off and it looks like my daughter's wrists are dirty. She doesn't have a lot of social interaction at the moment, as she is only 18 months old, but whenever she does play with other children, they always notice and point out her wrists.
Promiseland, thanks for advice on moving to a warmer climate. I wish that we could do that for them. I don't think we will ever be able to do that, though. ON does stand for Ontario. We have had a pretty harsh winter, this year, but spring is coming soon! As much as our winters are cold, our summers can be extremely hot and humid. Last summer, we had temperatures of 30 celcius plus many days (sorry, I don't know what that is in farenheit). This summer will be a better indicator of how the humidity affects my daughter's skin, as last summer we didn't know she had ichthyosis and therefore weren't treating it correctly, until summer was almost over.

Thanks,
Angel

Top
Page 1 of 2 1 2 >

Moderator:  marcsmom, Sideshow_bob 

Copyright 2012 Ichthyosis Information