Hello, I am a new member with lots of questions!

Posted by: AshlynnesGranma

Hello, I am a new member with lots of questions! - 09/17/03 02:54 AM

Hello! My grandaughter was born a collodian baby last January. She has been diagnosed with Icthyosis but not which form. They suspect lamellar. I have so many questions I don't know where to begin. I feel there is more we could be doing for her than what we've been instructed to do. How do you care for a baby with Icthyosis? We've been told to use only petroleum jelly because anything else will affect her metabolism. Petroleum jelly just doesn't seem to work very well. She still has tightness of her skin on her face around her eyes and ears. She was born with her ears flat to her skull and they have improved somewhat, but they haven't totally "released" yet. Does anyone know how long this can take? She is also developing very slowly. She is 8months old but at the level of a 4month old. She seems very content to be a 4 month old baby. It's as if her discomfort is distracting her. Her physical symptoms are whitish scales on her arms and legs with thinner peeling skin on her torso and face. Her palms and soles of her feet build up what looks like peanut butter, for lack of a better description. The Dr. did prescribe Aquaphor with urea to be used on her hands and feet to "chew" up this build-up. My family is very frustrated because the Dr's don't really seem to have any experience in dealing with this condition. We live in Kansas. I would love to hear from anyone who has any advise on how to make her more comfortable. Thanks for taking the time to read this very long post.
Posted by: ShaunaJ

Re: Hello, I am a new member with lots of questions! - 09/17/03 05:30 AM

Boy can I relate to this. My 5 year old was born with the collodian skin as well. She does have Lamellar a biopsy has confirmed this. We used aquaphor mixed with purified water. We gooped her every 3 hours. It took well over a month for all of the collodian skin to shed. At about 8 months we used Eucerin Plus lotion and cream, and Lac-Hydrin 12%. This did sting so we stopped using it. Alot of people use aquaphor mixed with lactic acid and get pretty good result, but what may work for some might not work as well for others. Lots of lotions and routins are trile and error.

I would think that discomfort would be making her develope slow but I am not sure. Ryley developed just fine but didn't want to crawl much. She would use her feet and hands to crawl instead of knees and hands to crawl. She is now a very happy and smart child that loves herself the way she is.

Now we use carmol 20 every day except sat. On Sat we use Tazorac. Every day we use the Eucerin Plus lotion and cream over the Carmol 20 or Tazorac. We use Genteal eye drops in her eyes all day long to keep them moist. And she sees an ENT every 30 days to keep her ears from getting clogged with wax and dry skin. At bath time I use Sea Salt mixed with Powdered Milk, Goats Milk, Oat flour, Mineral Salt, Colloidal Oatmeal, Neem Pwdr, Corn Starch, Essential Oils of Lavender & Peppermint. This helps soften scales so we can scrub them off gently with a loofa. I love the smell of it. After her bath my whole upstairs smell slike the Milk Bath and it is so relaxing. All of these things we do keep Ryley looking good. She does still go through peeling phases we call them but it is white flakes and not as many dark scales.

In time you will find lotions that work and some that don't. The ones that work you will keep using and at times find more to add to the routin. I know it is all so overwhelming at first. I myself did too. But now we are in a comfortable routine that helps Ryley and keeps her as comforatble as possible.


As far as doctors knowing much I have found that few do and I am the teacher most of the time. This board helps me alot and so does the F.I.R.S.T web sight. It is WWW.Scalyskin.org Hopefuly since you live in Kansas you will be at the conference next year. It is in Kansas City, Missouri. You get loads of info from there and get to meet parent with kids who have Ichthyosis, Kids that have it, and adults that have it. Everybody is so wounderful and helpful at these conventions. Just like they are on this board. I plan on going to it and again both sets of grandparents are going to so you will be able to talk to other grandparents that went through or are going through what you are. Well I will let others post their advice and kind words since My post is like a novel now. Welcome to the board.

Shauna & Ryley
Johnson

P.S Feel free to e-mail me if you have any questions or just want to talk.

[This message has been edited by ShaunaJ (edited September 17, 2003).]
Posted by: Chandra

Re: Hello, I am a new member with lots of questions! - 09/17/03 08:01 PM

Hi Ashlynne's Grandma,

Welcome to the boards. Shauna's right, go visit www.scalyskin.org they can help you find a doctor somewhere near you that has knowledge of ichthyosis. If there isn't one in your area, they can at least help you educate a doctor.

There are a lot of different things out there that folks with Lamellar use to treat their skin. I use generic petroleum jelly everytime after I bathe or shower. I put 1 oz. of canola oil in my bathwater before I step in the tub, or apply the oil once I turn the shower off and before I put the jelly on. I use P&S shampoo 2x a week to treat the scales on my scalp, and once a week I use P&S Scalp Treatment according to the directions on the bottle. I also use Cetaphil bar soap, and that's the only soap I use. I try to use the anti-bacterial only once a week, and all other times I use the regular Cetaphil bar soap.

I have also used Eucerin, Aquaphor and A&D ointment in the past instead of petroleum jelly. I don't use any of the acidic lotions as they burn too much for me, but many other folks with lamellar can tolerate the acidic lotions quite well. Another resource you can look at on this web site is the "helpful hints" section. The board's owners have gone to a great deal of effort to list as many different items that people use to care for their ichthyosis as they could.

I am not a physician, however I was born with Lamellar and am now 31 years old. I would be very surprised to learn that any other topical treatment would affect your grandbaby's metabolism. Without hearing the doctor's explanation, I am inclined to think that maybe he has been considering how fast Ashlynne's metabolism is? I would ask for more clarification and specifically what he's basing this recommendation on. However, your grandbaby most likely has a very high need for protein as most of us with ichthyosis do. Historically, children with ichthyosis up until they're about five years old have a hard time getting as high of a caloric intake as they need. In recent years, it's been determined that the best way to give these children under five the amount of calories and protein (and other nutrients) that they need, use of a feeding tube is ideal.

The inability to get her to eat enough food for the amount of calories she needs may be part of why she is at the level of a 4 month old instead of an 8 month old. I too, developed very slowly as a child. There was no impedent to my mental development, but physically I often resembled a much younger child compared to classmates until I reached my early teens, and then I caught up physically. I was always underweight up until then. When I was an infant (way back in the early 70's) the doctors thought because I was developing so slowly, that I most likely would be mentally retarded. Fortunately that has not proven true, nor is it true for anyone else I know or have heard of that has icthyosis of any sort.

The important thing to know is that just because one type of skin care routine works for one person with the same type of ichthyosis doesn't mean it will work for your grandbaby. This means being will and open to trying new things. Some folks with lamellar find saltwater baths very soothing and relaxing in addition to helping them remove scaling, while I find saltwater baths to be very painful. Most of us do agree that the Aveeno oatmeal baths feel good, so you might want to try that with your granddaughter.

I personally recommend that when trying a new product, I try it on the back of my hand or my forearm in a small area before applying the new product all over. That's to test it and see if it feels ok as if it doesn't, I can wash it off quickly. As trying new lotions and ointments all the time can be very costly, I also recommend asking for samples if the dermatologist or store has any available. It's obnoxious to spend $12 on a bottle or jar of something only to find it isn't right for you, or in this case, Ashlynne. Because she is an infant, look for signs of irritation like increased redness after application of the ointment, if she cries when you then try to touch the area that you applied the lotion/ointment to, or any other signs of discomfort that you can recognize.

It is important that your grandaughter have a dermatologist as well as a pediatrician, though often a pediatric dermatologist can be best. Although those are hard to find outside of university hospital settings or urban areas with many medical resources.

F.I.R.S.T. (at www.scalyskin.org) will also help put your family in touch with someone geographically near you who has icthyosis that can act as a resource or mentor for you. Whenever possible, they will try to locate someone for you who either has the same type of icthyosis, or the parent of a child with the same type of ichthosis. There's also all of us here on the board and almost always you can get a response to your questions with 48 hours or less. I try to check the boards every day and at least let you know your post has been seen. If I don't have an answer for you and I know of someone who might, I often will tell you who you might ask, or I'll send an email to the person that might be able to answer your question.

In relation to Ashlynne's ears, once you've got most of the area exfoliated (dead skin cells, or what we often call 'flakes' or 'flakies' removed) and can keep them relatively exfoliated, if her ears are going to release a little from the side, I guess that's when they would do it. My ears are also very close to my skull and always have been. It's never bothered me.

One thing that will help reduce the heavy scaling on her feet and hands is if you get them wet, coat them with your preferred moisturizer for her, and then wrap some plastic wrap around them. As an adult, I use vinyl surgical gloves around my hands to do this so I can still use my hands while moisturizing them this way, and I wear thick cotton socks at night to keep the ointment on my feet. You will find that moisturizers are most effect when you get Ashlynne wet, gently scrub off the flakies with a nubby washcloth (and I stress doing it gently!), put a little oil on her (whether it be canola oil or some tyope of body oil) and then put the preferred ointment or lotion on her. I don't ever rub myself with a towel, I simply pat myself dry so that I'm not dripping wet, but that's all the moisture I want to remove after stepping out of the bath or shower. Not everyone uses an oil before putting on their preferred lotion or ointment, but for me it makes a big difference in how long my skin stays moist and how much of the moisture it will absorb.

Yes, Ashlynne's discomfort could be distracting her. When her skin gets dry, it tightens, and that can make movement uncomfortable if not downright painful. At least it is for me and has been for my entire life. You may find that her hands and feet are very pressure sensitive, so once she starts learning to walk, her shoes will need to offer excellent support. I personally know that playing a game like basketball where the ball smacks against my hands is the fastest way for me to get painful splits of the skin in the palms of my hands. Some folks with lamellar aren't as sensitive to pressure as I am. Until Ashlynne and the rest of the family figures out what is and isn't comfortable activity wise, go slowly with certain activities.

You will also want to prevent Ashlynne from getting sunburnt. This means keeping her shaded at all times when she is outdoors, or next to a window. Some sunblocks can irritate the skin so you just have to experiment until you find the right one. Many of us find the sunblocks marketed for babies to be the most non-irritating.

I hope this helps. Feel free to ask questions anytime.