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#9517 - 08/20/00 01:50 AM
Re: my lamellar Ichthyosis baby
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Anonymous
Unregistered
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Carmen,
Have you found a favorite cream yet for your son? When Laura was a baby, I was initially advised (and this is what I did) to not bathe her but to cream her with Eucerin (the heaviest moisturizer that was available then) every 4 hours. This kept Laura reasonably comfortable--and she was a collodian baby with severe lamellar ichthyosis.
Now, of course, most people recognize that bathing is an important addition to the treatment program, but creaming immediately after to seal in the moisture, remains a critically important part of the process. Also, there are alot more suitable creams than just Eucerin available now.
I'm sure that some of the other mom's that read this board will respond to you soon. Laura's 31 now, so this was awhile ago for me. But, if you contact FIRST, they could help put you in touch with other mom's facing the same problems now (or moms that have been through this more recently). You can reach FIRST at 215-631-1411.
FIRST can also help you get in contact with a dermatologist who is familiar with ichthyosis. Seeing a doctor who is familiar with ichthyosis is very important in order to get the best medical advice. Most doctors have never seen ichthyosis because it is so rare. All doctors of course do their very best to provide you with their best advice. But really, the best thing for you and your baby is to deal with one that is familiar with ichthyosis already.
I hope this helps. My heart aches for you and your baby. I'll keep you in my thoughts.
Elza
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#9519 - 08/21/00 01:16 AM
Re: my lamellar Ichthyosis baby
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Member
Registered: 08/12/00
Posts: 107
Loc: Wantagh, NY USA
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My son Marc has lamellar ichthyosis so I know exactly what you are going through. Elza gave you very good advice in her response to your post. It is difficult to know exactly why a 4 month old is crying...hunger, colic, etc...or is it because of the skin. I am sure you have looked into the other possibilites of perhaps why your baby is crying. I, too cried with my son when he was very little. He didn't like getting his cream applied and while he cried, I cried, too. All I can say is that it does get better. I joined FIRST and found a great support network. We attended conferences and it was important to see other children who looked like my son. It is important for you to be strong for your child. I am not ashamed of my son's skin and I take him everywhere. He is now old enough to answer other people if they ask what is wrong with his skin. People are amazed when a 3 1/2 year old says, "I have dry skin. It is called lamellar ichthyosis." (Even our dermatologist is speechless!) One thing I have learned to do is to trust your own instincts and listen to others who have gone through what you are going through now. The doctors might think they know everything, but they are not living it daily as we are. First of all, when Marc was an infant, I gave him a bath 3 times a day. The more water the better. Once out of the tub, I applied aquaphor to his entire body. This really helped to moisturize his skin. How often are you bathing your son? What creams are you using? Are you dressing your child in 100% cotton? This was very important for Marc when he was little. I tried, and still do, to keep Marc very cool. Could it be possible that your son is hot? I hope I have been helpful. I am sure that together we can find some solutions to make you and your son happy. Take care. [img] http://www.ichthyosis.com/ubb/smile.gif[/img] Denise
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#9524 - 08/31/00 02:57 AM
Re: my lamellar Ichthyosis baby
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Member
Registered: 08/12/00
Posts: 107
Loc: Wantagh, NY USA
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Hi Carmen,
You were asking what your son's skin should look like. I remember that when Marc was an infant, he went through many changes. Once the collodian membrane had fallen off, the skin underneath varied in appearance. His forehead was scaly and his cheeks were smooth. His knees were rough and had thick scales on them while his hands had smaller scales and not so rough. When Marc was 1 1/2 years old, he developed red bumps all over his body. No one knew what it was-an allergic reaction, heat related or ichthyosis related. It looked as if he was severely sunburned or was burned in a fire. This lasted for a few months, and then it disappeared never to return again(thank goodness!) I now notice that Marc's skin goes through cycles. It is much better in the warmer weather. His chest, back and face have fine white scale, not the dark, thick scale associated with lamellar. His forehead still has larger scales. His knees are still rough, but the Neostrata Problem Dry Skin cream really does the trick. It removes the scale and leaves his skin looking great. His hands and toes are scaly, but not dark and thick. Overall, he looks great! His skin definitely has improved since he was born. You mention that your son makes himself bleed. Marc never did this. My guess is that your son's skin is uncomfortable for him so that is why he scratches. As he gets older and he can verbalize his problems, it will be easier for you to explain why he shouldn't scratch or pick at his skin. Carmen, you have to just take one day at a time. I have been where you are now. I cried with my son, too as I put on his creams and he cried because he didn't want them on. I often wondered why this had to happen to my son, but I now wonder what I can do to help him. Hang in there-you will both be okay. Denise
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#9525 - 10/09/00 07:44 AM
Re: my lamellar Ichthyosis baby
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Member
Registered: 08/29/00
Posts: 36
Loc: Belgium St-Lenaarts
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hello carmen here the mom of Sophie, we talk a few weeks ago by e-mail I see that you are not feeling happy, i really understand it. But i do remember that when Sophie whas a little baby she just take 1 time every day a bath before she go to sleep, just like another baby. Then a cream her after it and for the daytimes we cream her every 3-4 hours. She cry alot ,specially after the bath and also every time when a put cream on, and the she cry just like all the baby's when she whas hungry or sleepy, so almost all the day, and i just felt like you do. I just try to put the cream in the microwave for a few seconds , just warm it a little up,when you put this cream on , it will feels good on the skin. The docters never say that to do, but they dont feel cold cream , they also say to give alot bath but i do just 1 time a day and my baby dont like it after the bath because every baby cry after a bath , not only ichtyosis baby's. Maybe you try alot that peopple and dokters say, but we have now a baby to without ichty and he is 13 months and i just feel somethimes like you. He cry the first 6 months all the day and it whas the not ichtyosis but he just dont like eating, he whas a baby that cry more then other baby's. Now he is a little bigger and walk and play and he is happy. So it's better that you will take care of yourself with a little help for the baby from someone else or a little help in the house, so you could take a break , otherwise it would be to hard for you, so take a break and spoil yourself a little,because a baby feels it when you are deppressed. If you want to talk more please send an e-mail leo.lucas@pandora.be alot hugges from all of us to you and your husband. leo and aida from Europa( Belgium°
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