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#9516 - 08/17/00 07:29 AM my lamellar Ichthyosis baby
Carmen Bare Offline
Member

Registered: 08/13/00
Posts: 15
Loc: Brsibane Australia
I have a 4 month old baby with LI and he cry a lot and he bleeds very easily. He don't sleep much and he can't get comfortable, he is not a happy baby and I believe he is in pain all the time. Does any one have the same problems and if so how did you over come it. Because right now I am crying too. Please help. It is lucky if he smiles maybe once a week. I just want him to have a good life after all that is why people have babies. And a pain free one if we can help it, his doctors have told me to give him pain killers twice a day before his baths I don't like the idea but I do give it to him. I don't think it is helping because he is still screaming when I bath him and no I don't use soap only bath oils. Don't know what to do. Please help. Carmen
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CB

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#9517 - 08/19/00 08:50 PM Re: my lamellar Ichthyosis baby
Anonymous
Unregistered


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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#9518 - 08/20/00 01:27 AM Re: my lamellar Ichthyosis baby
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Carmen how are you doing this evening. I read your post and am so sorry. I tried emailing you but it came back. My email address is lesthan@aol.com. First of all have you contacted info@scalyskin.org. The foundation can be a good source of info. Also many of the mothers with lamellar children will see this post and respond.They will be your best source of information because they have been in your footsteps.Also you need a good dermotologist who knows ichthyosis.Please email me and we can talk further. Take care Carmen. Bye for now. Les
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Les Avakian

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#9519 - 08/20/00 08:16 PM Re: my lamellar Ichthyosis baby
marcsmom_dup1 Offline

Member

Registered: 08/12/00
Posts: 107
Loc: Wantagh, NY USA
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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#9520 - 08/22/00 01:58 AM Re: my lamellar Ichthyosis baby
Carmen Bare Offline
Member

Registered: 08/13/00
Posts: 15
Loc: Brsibane Australia
Thank you for all the help I have been getting on this BB. I bath him twice a day and I am using paraffin cream on his body and 50% white paraffin and 50% liquid paraffin on his bottom. And he still don't sleep a lot. Got to go now he is awake again. Thanks again. Love Carmen
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CB

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#9521 - 08/22/00 05:09 PM Re: my lamellar Ichthyosis baby
sonia Offline

Member

Registered: 08/22/00
Posts: 77
Loc: United Kingdom
Hi Carmen, I've been using giving warm olive oil massages to my daughter Aiesha since she was born (she's just turned 5 now). I also add a few drops of good quality vitamin E oil to promote healing (the brand I use is Solgar). I have noticed that Extra Virgin Olive Oil seems to have more staying power than ordinary - and recently my husband bought some organic olive oil from a health show which really came out tops! Another thing you could do is ask an aromatherapist to make up a massage blend for your baby. I've spoken to one here and she recommends lavender (good for cracked and inflamed skin) in a base of jojoba oil. I haven't used this myself yet as I still have a fair amount of olive oil left but I shall be trying it quite soon. Hope this helps!
Love to you and your baby,
Sonia.

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#9522 - 08/24/00 01:54 AM Re: my lamellar Ichthyosis baby
Carmen Bare Offline
Member

Registered: 08/13/00
Posts: 15
Loc: Brsibane Australia
My kids are asleep again so what I want to know is what is good for LI and what is not, how is he suppose to look? He did have brown scales all over him at one point but that is now all gone. He is some times red and some times pink with red patches and his skins peels like he is sun burnt,it is rough to touch and at times he bleeds a bit around his face and ears. He only has really hard skin on the bottom of his feet, all the ones on his hands and fingers are all gone now. So is that good for LI or not? He drinks my milk and I am on a lot of vitamins for skin eg Zinc and omega (3 and 6) oils etc and that new Nuni juice. It is the most bad tasting drink on earth but if it works I will try anything. I have no one to compare Winson with so I don't know if we are on the right path or not. He is now not crying so much as I now give him a stronger pain killer twice a day but he is still at his face a lot of his awake time, making it bleed. I also want to know what LI feels like? Can some one tell me as I want to know as much as I can, and I want to understand more so I can help him to a better start to life. I want his childhood to be a happy and pain free one. Please write and tell me as much as you can and may God Bless. Thank you all so Much. Love Carmen
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CB

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#9523 - 08/24/00 10:00 AM Re: my lamellar Ichthyosis baby
sonia Offline

Member

Registered: 08/22/00
Posts: 77
Loc: United Kingdom
Hi Carmen,
I actually gave noni juice to Aiesha and her condition improved by 80% in around 3 weeks. She actually got worse before she got better but that is actually a detox phase and if you can get through that, then good. I don't know if you taking noni will help your baby and although it's considered safe for children, whether you want to give it is entirely your decision. One thing, though, make sure it's Tahitian noni juice that you are taking even if it is for yourself. If you want to know why, then please email at sonia_patel@hotmail.com as I think it is better to take this outside the forum.
Much love to you and your baby,

Sonia.

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#9524 - 08/30/00 09:57 PM Re: my lamellar Ichthyosis baby
marcsmom_dup1 Offline

Member

Registered: 08/12/00
Posts: 107
Loc: Wantagh, NY USA
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 02:44 AM Re: my lamellar Ichthyosis baby
OOske Offline
Member

Registered: 08/29/00
Posts: 36
Loc: Belgium St-Lenaarts
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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#29104 - 01/06/14 08:18 AM Re: my lamellar Ichthyosis baby [Re: Carmen Bare]
Om's Dad Offline
New member

Registered: 01/22/13
Posts: 1
Almost 14 years on from the post above, Carmen how is your boy now?

We have a son who has just turned 1 with LI.

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