One of the biggest challenges for anyone with ichthyosis is finding enough time to do the things that need to be done to keep their skin looking nice. We have found that, as Matt gets older and involved in more activities, this gets more and more difficult. Before Matt started school, he always got at least two 20 minute baths a day. Now most of those baths have been converted to showers, with a couple of long soaks worked in each week when scheduling allows. Even with the switch to showers, he has to get up a half hour earlier than his brother and sister in order to be ready for school on time.

He has always loved his baths and sometimes he’ll still spend three or four hours in the tub on a Saturday or Sunday, building with Legos, playing with toy cars, or creating adventures with action figures. Because of the oils in the water, the toys tend to get pretty scummy but I have found that they wash up very nicely in a mesh bag on the top rack of the dishwasher. In addition to oils in the bath water, we have been adding lavender sea salts, which were recommended to us as both a skin softener and a method of reducing some of the redness in his skin tone. If you decide to try the lavender sea salts or lavender bath oil beads, read the ingredients on the packages carefully before you buy to ensure they actually have lavender oil or lavender in them. Many of them just have a lavender fragrance.

Matt uses a pumice stone to help loosen the scales while he is in the tub, with my assistance on his hard-to-reach areas. He uses it on almost his entire body, including his forehead, but not the rest of his face. We use a pumice stone that has a wooden handle – this makes it easier for him to do areas like the back of his knees. He uses the pumice stone a little more sporadically in the shower than in the tub, basically because it is a little harder to supervise what’s going on behind those clouded doors! In some ways, Matt cares greatly about his appearance, but in others, he is a typical boy when it comes to personal hygiene and needs lots of reminders.

Matt generally does not use soap in his showers and baths, because most soaps tend to be drying. We do occasionally use a scrub, particularly if he’s had a long day of playing in the dirt, an activity that he seems to enjoy greatly and he has to know not to ever rub his eyes.

Immediately following Matt’s bath or shower, while he is still moist, he applies his lotions. He uses Aquaphor compounded with 6% lactic acid on his entire body, with the exception of his scalp. He even applies the lotion around his eyes and over his eyelids. When he does this, he just closes his eyes really tight so that nothing gets in them, and of course, he has to know not to ever rub his eyes. We have never had a problem with the lotion actually getting in his eyes, as he learned this at a very early age.

Matt has applied his lotions himself (except for his back) since he was about five years old. We actually started teaching him to do his lotions himself when he was about two and a half. We began with him just doing his tummy, then his tummy and arms, then tummy, arms and legs, etc. Our feeling is that, the more he takes responsibility for his skin care, the better off he will be in the long run. This independence has allowed him his privacy when we have a babysitter, and even made it possible for him to spend a week at a YMCA camp last summer.

Matt also uses a topical gel called Tazorac on the back of his hands where the scaling tends to be worse. This product has done a great job of keeping his hands looking nice in spite of all the hand washing that inevitably takes place throughout the day.

We have recently begun using PDS Regular Strength on Matt’s arms and legs as well. He does not like the smell of the PDS (he says it smells like burnt toast) and is adamantly opposed to wearing it to school, but has consented to use it at bedtime. We have not yet used it long enough to be able to recommend it personally, but it came highly recommended to us, with the caution that, once it has been used regularly enough to prevent additional scaly build-up, it may need to be diluted with Aquaphor or another base cream.

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In-between Care

Also after lunch, he dampens this face and hands and applies Vanicream to help keep his skin from getting too dry throughout the day. At the beginning of second grade, Matt decided that taking time to lotion his hands after lunch was an unnecessary step, particularly since it delayed the start of his recess time. It took about a week for his hands to begin to crack and bleed, a painful learning experience but one that he is not likely to repeat.

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School

Sending any child off for that first day of school is a tough thing for a mom, but when that child is "different" from the other children, it is even tougher. I think the best ways you can help your child adjust to school are first, by getting him into social situations at a young age so that he learns to handle them well, and second, by providing information to the other parents so that they know ichthyosis is not a contagious condition and therefore, aren’t nervous about their child being around yours.

Matt has always been exposed to a wide variety of people and social situations. With two older siblings, many of these in our case involved the other kids’ activities, but I would include family outings to stores, restaurants, parks, etc., and preschool if that is an option that is available for you. By doing this, you can count on providing your child with lots of exposure to the questions that they will eventually have to answer on their own. These questions and comments are generally just the result of curiosity ("what happened to him?) but sometimes imply that you are not exactly a role model parent. Matt has never had a sunburn in his life, but has probably had his "sunburn" commented on more times than any ten kids. Because we did not want Matt to ever feel embarrassed or defensive about his skin, we took the approach of answering any and all questions and comments with a smile and a brief comment: "Oh, he was just born with a dry skin condition called ichthyosis" or "Oh, no, he’s not sunburned – it’s just a dry skin condition he was born with". Generally, this is enough to satisfy most people, although some people are then curious about whether it hurts or whether he will ever grow out of it. We have never had a negative reaction to our response which has, of course, had a very nice positive impact on Matt.

When Matt began attending preschool, we visited with his teachers before school started so that they would know what to expect, and then prepared a note to send home with all the other children on the first day of school. The note just explained a little bit about ichthyosis – what it is, what it looks like, and the fact that it’s not contagious. We have sent the note home three times now: once when he started preschool, once when he started kindergarten, and then because enrollment at our school had jumped so much, we did it again when he started first grade.

In first grade, Matt and our school counselor also did a little presentation on ichthyosis for his class. I sent her a detailed note with information about what ichthyosis is and Matt’s routine so she could help him explain it to his class. The kids were able to ask questions which Matt answered and he even passed around a jar of his lotion so that each of the kids could see what it felt like. Because he was used to answering questions and is outgoing and secure, this was not at all uncomfortable for him and probably saved him from answering a lot of individual questions in the cafeteria and on the playground.

Although Matt’s elementary school experience has been good, I do have some concerns about when Matt starts middle school. That is a tough age even if you look "perfect" and there are so many insecure kids just looking for someone to pick on. If multiple elementary schools come together for middle school, that also means lots of new kids who won’t know what a great personality your child has. And, of course, sending notes home at that point is not really an option, because that could be what starts the teasing. We have discussed this with Matt’s dermatologist andwill probably start Matt on retinoids the year before he enters middle school so that we have the correct dosage figured out before middle school starts. Our feeling is that, although there are some potential side effects associated with retinoids, there are long-term side effects to being an outcast adolescent as well. For some children, the emotional side-effects may start earlier, so this is something you’ll want to discuss with your doctor so that you can determine the right timing for your child.

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Hair and Scalp Care

Matt’s hair has always been one of our biggest challenges. It tends to be dry, brittle, and thin, and the scales that build up on his head can be very thick. When Matt was a baby and didn’t have much hair, we used to put his Aquaphor on his entire body, including his head. As a toddler, we switched to using Epilyt on his scalp during the day and also at night. Epilyt is a lighter oil so it doesn’t make the hair look as greasy as Aquaphor or mineral oil. Now that Matt is getting older, he doesn’t think the wet look is "cool" so we try to control the scales on his scalp during his long baths and at night while he sleeps. During the day, he likes to use a hair gel, which does a nice job of adding volume to his thin, fly-away hair, as well as keeping it in neat.

We have found that the single most successful product for controlling the scales on his head is mineral oil or baby oil. We prefer Johnson’s Baby Oil Gel with Aloe Vera and Vitamin E, which tends to be a little less messy than regular mineral or baby oils. We give his head a good soak with the Johnson’s Baby Oil Gel a couple of times a week while he’s in the tub and use a pumice stone to help loosen the scales. Then I take a fine tooth comb and get out all the loose scales. After that, I rub some more with the pumice stone, this time just on the parts that seem the thickest. Then I comb through again, put Neutrogena Maximum Strength T/Sal Therapeutic Shampoo on for about 10 minutes, rinse, repeat the shampoo and rinse steps to ensure all the oil is out, and then comb again. As Matt says, he doesn’t really like it when I work on his scalp and I have to admit this is the hardest part of his routine for me, too. He hates it because sometimes I accidentally catch the comb on a scale that isn’t quite ready to let go and it hurts when that happens. I don’t like it because, just like him, I am also afraid I’m going to catch a scale that’s not completely loose. Frankly, this makes scalp work a little tense for both of us, although we both agree it has to be done. At this point, Matt does a lot of the rubbing with the pumice stone himself and is just starting to help with the combing as well – I am really looking forward to the day when he can handle the comb all by himself.

A couple of times a week, we leave Johnson’s Baby Oil Gel or Baker’s P&S Liquid on all night under a shower cap. We started doing this when Matt was about six and no longer wanted to have any oils on his head during the day. If you want to try this and the elastic on the shower cap is an irritant, try using a thick cotton jersey headband between the elastic and the skin. This also helps the shower cap elastic band last longer. This is not recommended for very young children, of course.

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Eyes and Ears

Matt doesn’t sleep with his eyes open, but, as I mentioned earlier, Matt applies his Aquaphor compound right over his eye lids. We also use lubricating drops in his eyes every night just before he goes to sleep. We use Refresh P.M. Lubricant Eye Ointment. This is a thicker oilier eye lubricant than the one he uses during the day. He holds his eyelid down for me and I apply one drop right along the edge of his upper lid. He blinks a couple of times and we’re done. We only discovered the need for daily eye lubrication after Matt developed a problem with scaling on his cornea, but diligent use of the ointment took care of the problem and has successfully prevented a recurrence.

We use Debrox Drops Earwax Removal Aid once a week in Matt’s ears. I put them in just before he goes to sleep and in the morning, I remove anything that is loose using a good pair of tweezers. Matt does an excellent job of laying very still for me while I get the "potatoes" out. His hearing has consistently tested normal in spite of the scaling in his ear canal. According to our ENT, skin cells will conduct sound so as long as the wax is not becoming occluded, there should not be a problem.

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Emotional and Social Issues

When Matt was a baby, I worried a lot about how well he would make friends, whether or not his schoolmates would tease him, and if the ichthyosis would make his childhood difficult. I can honestly say that this has not been a problem. Matt is a normal,well-adjusted child with great social skills and many friends. Kids just don’t seem that concerned with what he looks like. Sometimes kids who don’t know him will ask about it but once he tells them he was just born with dry skin, the interactions proceed just like they would with any two kids. There have been a couple of exceptions. There was one girl in his preschool class that did not want to hold hands with Matt. This happened only once – after that, the teachers just subtly made sure they were not next to each other whenever they did an activity that involved holding hands. I don’t even think Matt remembers this or perhaps it was handled so well, he didn’t even notice when it happened. I might also add that that the girls in his class now have no problem at all holding his hands at our school skating parties, so this is not an ongoing situation.

The other situation is the "glue boy" situation he mentions in his message. This situation was tough and initially, Matt’s feelings were hurt. He ended up handling it himself, though, and frankly, I think the boy involved was just looking for someone to be mean to. Again, this was an isolated incident – none of the other kids were saying anything cruel and in fact, a couple of them stood up for Matt. The situation ended up being a family lessen about not judging people by the color (or in this case, moisture content) of their skin. Our position was that it was too bad this boy passed up the chance to have a good friend by choosing to be mean. Matt has lots of friends, and he knows that he is a good friend, so this was an outlook that made sense to him.

That’s it – in eight years, two uncomfortable social situations due to his ichthyosis. But I might add that Matt’s personality is very outgoing and I think this helps him a lot. Not only do other kids like him, but their parents do, too. So he gets invited to birthday parties, outings to the movies, skating, etc. None of his friends’ parents are the least bit self-conscious about having Matt along, even though they may occasionally encounter the "what happened to him?" questions themselves.

My advice as a parent is to try not to be too sensitive or protective about it or be reading anything into situations. Having two older children probably helps me to keep things in perspective and remember that even "normal" kids get picked on sometimes. Another one of Matt’s preschool experiences might do a better job of explaining what I’m talking about. One day, Matt came home from preschool complaining that a boy at school was calling him names. Of course, the first thing that went through my head is that it had to do with Matt’s skin, and I was immediately thinking of all the terrible names that the kid might have called him. But when I asked Matt what the boy was calling him, the answer was "Shorty" and "Shrimp." It had nothing to do with his skin at all – it had to do with the fact that he was the smallest boy in the class. I don't think he remembers this particular situation, but it was a good lesson for me and I try to always remember it!

The bottom line is that Matt does get a lot of questions when he meets new people, but he has learned to take them in stride, provide an answer, and get on with the business at hand. He is very confident in himself, both one on one and as part of a group. I know that no parent can guarantee what personality their child will have and some personality traits probably are inherent, but I do have a personal theory that I think applies to Matt. There is scientific evidence that links infant massage and touch to feelings of security and I think very few children get as much comforting touch as ichthyotic children do. All those times we put on their lotions, we are, in effect, giving them a body massage. Even now, when Matt does his own lotions, he’s eligible for two back rubs a day– I don’t think there are many people in the world who can say that! I truly believe that all those lotion massages contributed to Matt’s confident, secure personality, which is exactly what he needed to be able to handle being a little bit "different".

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Physical Activities

When Matt was very young, it was obviously my responsibility to monitor his body heat and make sure he stayed cool. I did this based on my knowledge of the weather conditions and by looking at Matt’s face. If it was red, it was time to rest, wet down, or find some air conditioning. By the time he was six, I no longer had to tell him he could not go outside to play on an extremely hot summer day. I could let him go, confident that he would be back inside shortly complaining that he was hot. He has even played on a baseball league in the summer, with an extra jug of water available to pour on the back of his neck and over his feet when he needed to cool down. Don’t miss Staying Cool Hints for lots of great suggestions on staying cool if your child wants to participate in hot weather sports like baseball.

Another approach is to find sports that interest your child and also accommodate the difficulties with sweating. Swimming has been great for Matt, and as long as he showers immediately after swimming, the chlorine is not a problem at all. Our town has a swim team, which gives him the experience of a team sport without the downside normally associated with hot weather. He tried golfing last summer and enjoyed it so we are planning golf lessons this year. This is also a good sport because most children’s leagues are in the morning before it is too hot.

It is not uncommon for people with ichthyosis to have other physical problems as well. Some of this is related to the fact that the skin around the joints may be tight, restricting movement, and some to other physical manifestations that are part of one or another of the ichthyosis syndromes. Regardless of the reason, it is important to have your child evaluated by a neurologist if you notice any developmental delays, and then follow up with physical therapy and occupational therapy sessions if needed. Matt walked at 15 months, which is definitely within the normal range, but developed many of his gross and fine motor skills late. He has been diagnosed with hypomusculatory symptoms, meaning his muscles are weak. He began working with a physical therapist and occupational therapist when he was four, and, although he no longer requires routine therapy sessions, he continues to be evaluated routinely even at this age.

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Clothing and Fabrics

The lotions and creams that are required to maintain ichthyotic skin can be very tough on clothes. We have found that heavyweight 100% cotton fabrics are best, because the lotions do not soak through to the outside of the fabric and also washes out of these fabrics well. We try to avoid any polyester-blend fabrics because the lotions tend to get imbedded in them and then they always look dingy. When it is necessary to make an exception to this (as with Matt’s Cub Scout shirt, which is a cotton/polyester blend), Matt wears a 100% cotton T-shirt to keep his lotions from penetrating the fabric.

We do not use a special laundry detergent because Matt’s skin is not sensitive. Colorfastness, however, is very important as it sometimes necessary to wash his clothes with hot water. Any lotions or creams that do work their way to the surface of the fabric work as a magnet for dirt. This was especially a problem when Matt was crawling – his knees always looked like he had been crawling through a dirt pile!

We have also found that elastic tends to disintegrate after too frequent contact with Matt’s lotions. With pajamas, for example, we make sure the elastic bands are covered with fabric. Even better are one-piece pajamas (blanket sleepers), which are available at least up to a children’s size 14. It is easy to cut the feet off the bottom and sew cotton ribbing to the bottom of the legs if footed pajamas are too hot for your older child. I have been unable to find undershorts with a covered elastic band but, after trying about half a dozen brands, have concluded that Hanes brand has the longest staying power. I highly recommend them.

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Being Wonderful

I told Matt to add that last line to his story, but he knows it’s true. In some ways, that’s the hardest part of being the parent of a child with any kind of a disability. We know they’re wonderful, and find it hard to accept when other people key in first on the one thing about them that’s obviously not wonderful.

When Matt was five, my husband and I attended a high school class reunion. As part of the entertainment, the reunion committee had lined up a comedian who reminisced about his own experiences in high school, which included a wrestling match in which he had competed against a boy who, we knew from the not-too-kind description, had ichthyosis. (Now what are the chances of that happening?) Some members of the audience were laughing at his story, while those who knew about Matt’s condition were looking at my husband and I for our reaction. My first reaction, quite honestly, was anger that this comedian could think that ichthyosis is a laughing matter. But then I found myself thinking, "Wow, wrestling! That kid must have had great self-confidence to be able to compete in wrestling without worrying about what anyone else would think about his skin. I hope Matt turns out like that."

The point of this story is that ichthyosis does not have to be disabling unless someone chooses to let it be, and a child’s attitude about ichthyosis is at least 90% derived from his parents. At this point, I don’t know what activities Matt will choose in high school or what he’ll do for a living when he grows up, but I do know that he will never allow his ichthyosis to get in the way of him being the wonderful person that he is. And some of his wonderfulness comes from the fact that he has ichthyosis -- he is used to drawing people’s attention and standing out a little from the crowd, and has learned to make the most of it. He really is wonderful!