Dealing with Eczema

I wrote this on our Truly Pure & Natural blog, but wanted to share it here, too.  It seems like there are so many people suffering with eczema, and I wanted to share a few things that have worked for us over the years.


We've received many questions about eczema recently. I sure don't have all the answers, in spite of having suffered with eczema myself, and having three kids who have had it.

What I do know about eczema is that it's complex and there doesn't seem to be any simple answer. I've tried different diets, changing their environment, homeopathy, herbal remedies, and prescription meds when there didn't seem to be any other choices. Some things worked beautifully...for awhile. My son was off of all carbs and was taking different herbal supplements and his skin cleared up, only to break out again when the season changed.

Some kids do better in cooler weather; others improve in hot weather. Some kids are helped by swimming in pools or the ocean; other kids' skin is aggravated by chlorine and/or salt.

Elimination diets can be very helpful. Some of the common allergens that may contribute to eczema flares are:

wheat and gluten

dairy

soy

eggs

shellfish

citrus

chocolate

corn

peanuts and other legumes

artificial colors

artificial flavors

artificial sweeteners

preservatives

and more!

It's helpful to find out if the child has environmental allergies. One of our sons is extremely allergic to dust mites. Once we removed the carpeting from his bedroom, covered the mattresses and pillows, took down the blinds, and removed all stuffed animals and books, his skin improved. We sanitize his bedding in the washer and dryer, and we dust and damp mop frequently. There's also an air purifier going in his room at all times.

We avoid personal care and cleaning products that have artificial dyes, preservatives, and fragrances in them. The children wear cotton clothes and avoid polyester as much as possible. When we do laundry, we use a natural, fragrance-free detergent, and we always do a double rinse when we wash their clothes, bedding, and towels. We turn their clothes inside-out when we wash them so that the clothing that touches their skin gets extra clean.

As far as TPN's products go, we use different products, depending on the severity of the eczema.

One thing that we like to use is plain coconut oil. Coconut oil has healing properties, absorbs quickly into the skin, and is very beneficial for eczema. We offer two types: Raw Organic Cold Pressed Extra Virgin, which has a coconut smell, and Organic Expeller Pressed, which is slightly more processed but still good for the skin, and does not have a coconut smell. In warm weather, we keep the coconut oil in the fridge where it solidifies and is easier to apply than when in the liquid form.

We also use Oria's O'shay Nature's Butter. It's very healing and soothing, and feels so good on very dry skin with eczema.

For mild eczema with dry skin, we use Tate's Conditioner. It's marketed primarily as a hair conditioner, but it's also used as a skin conditioner. (Click here for a huge list of different uses for the conditioner.) It works well for dry, irritated skin, providing light moisturizing.

Other things we do are to bathe infrequently with very mild soaps. We offer Coconut Milk Bar Soap, and the Lavender in particular often helps eczema.

One thing that helped a lot when my one son's eczema was severe was wet wraps. He didn't like them at all (he also has sensory issues, but I don't think that they would be particularly comfortable for anyone!), so we had to get creative and use a little motivation (okay, bribery!) to get him to follow through.

I first heard about this being done at National Jewish, and we then did it under the guidance of our physicians at our local children's hospital. It should always be done under a doctor's supervision because, if the eczema is open, the treatment could lead to infection.

The child soaks in the tub, filled with warm water, for 15 or 20 minutes, and then is quickly patted (never rubbed) dry with a towel (leaving the skin slightly damp), and a moisturizer is applied immediately. A physician may recommend a steroid or other prescription cream; we had good results just using a thick moisturizer or salve. Next, wet cloths or wet clothing are put on the child. We wet long underwear with warm water, wrung them out well, and then put them on. Over the wet layer, goes a dry layer. We used oversized sweat pants and sweat shirts or cotton pajamas.

The child can then lie in bed, under a warm blanket and watch a movie or do something to keep him or her occupied for the next two hours. Check periodically to make sure that the clothes next to the child's body are still damp. If not, spray them with warm water from a clean spray bottle.

After a minimum of two hours, remove the wet clothing, apply an additional layer of moisturizer to the child, and dress as usual.

In cases of severe eczema, I've heard it recommended to do this several times a day and then once before bedtime, when the child will then sleep in the wet wraps.

That never happened here, but we still saw results when we did it during the day.

For less severe eczema, another option is to simply bathe daily as described above, towel off as above, and slather the child well with a salve or moisturizer immediately, within three minutes of getting out of the tub. This process helps to seal in the moisture from the bath. With this, I've always used my salve or a homemade body butter because my son said that every single cream that the dermatologist suggested either burned his skin or made it itch even worse.

~~~~~~~~~~~~~~~~

More Allergies and More Prayer

So, after listening to Jay screaming at the top of his lungs, and having to hold him down to prevent him from bolting from the room (and this was with the sedative that J had taken before leaving the house!), Nick learned that Jay is allergic to shellfish, trees, weeds, cats, and dogs. But, dust mites are by far his worst allergy.

The night before he went in for testing, I was reading about how most kids with eczema are allergic to dust. So now I'm praying that we can get the dust in this house under control so that we can get his allergies and eczema under control!

I spent hours cleaning and dusting the bedroom, and Nick went in and vacuumed thoroughly. The allergist said that we really have to take up the carpeting, put in floors, replace the blinds, and cover the mattresses and pillows with allergy covers. I'm just praying about all of that because I have no idea how we're going to come up with the funds to do it.

Meanwhile, I've been up since 3:30 this morning because GracieGirl now has eczema on her back and legs, and she was going crazy with the itching. I gave her medicine and then held her for an hour until she stopped whimpering and went back to sleep. I'd started cleaning out her room, because she is also allergic to dust. We need to get the rug out of her room, too, and get her mattresses and pillows covered.

Now I know what my mom went through with me when I was little because I'm allergic to dust. I don't know how she found the time to clean my room each day, but that's what I need to do with our bedrooms. The problem is that I can't vacuum or do a lot of the other cleaning, and Nick's already up to his eyeballs doing all of the other things I can't do! All I know is that five out of six of us are allergic to dust, and we need to find a way to keep on top of the cleaning.

So, I'm praying for flooring, allergy covers, and someone to come clean our house! :)


Oh, and they want Jay to start weekly allergy shots immediately. I'd better pray about that one, too!

**************************************

J's Update

Still moving towards getting J to his Social Skills Camp...

I finally spoke with his autism doctor and we're getting a game plan together. She's going to increase one of his meds. I also told her that he started Singulair a month or two ago for his allergies. Here is a list of behavioral side effects from Singulair's website. J has experienced a good number of them. So, I called his allergist and he said to stop the Singulair immediately.

J doesn't know it, but he's scheduled for allergy testing on Monday. I hope we can figure out what's causing his symptoms so that we can practice avoidance and not have to rely on meds as much!

His doctor also wants to get his eczema under control, but we can't get in to see the dermatologist until September. She wants us to see our family doctor, which I think is somewhat pointless. J's former dermatologist already said that there's nothing more that he can do for him, so I'm not sure what a family doctor can do.

We took J to an ophthalmologist because none of the drops that the allergist prescribed were working. Let's just say that the exam didn't go well. As bad as I felt for J, it was almost amusing watching the doctor, who obviously had little experience dealing with kids on the spectrum, try to figure out what to do next. It seemed that he was stumped. A nurse came hurrying in after hearing the screams, but he didn't even know what to tell her to do! So, Nick and I jumped in and we finally got through the exam, which included rolling J's eyelids back, an unpleasant experience for anyone, but torturous for a kiddo with sensory issues.

J has Allergic Conjunctivitis and has to use a steroid eye drop in addition to his regular eye drops for the next couple of weeks. Thankfully, the new drops don't sting, because I'm just not up for any more battles, especially four times a day!

J's behavior specialist is working with him, too. She's contacted the bus company to see if he can take a test ride next week, as one of his big fears is riding the bus to and from camp. They're not returning her calls. Ugh.

Oh, and J went in to see if he would be approved to see the psychologist. They did a screening and then called me the following day, accusing me of "double dipping." What??? Yep, since he's getting Wraparound and seeing a behavior specialist, it was considered double dipping when we took him to another facility to see if he can see the psychologist there. They haughtily informed me that the screening will probably not be covered by his insurance.

What can I say? They're on to me. Yes, I was trying to double dip. I was thinking that I wasn't spending enough of my spare time making phone calls, filling out paperwork, and running kids to appointments. I just had to have more!

Unbelievable.

I realize that my attitude stinks. It's just been a long, behavior-filled week, compounded by too many headaches brought on by various medical policies. I told Nick that I'm going to pack up my washer and dryer (my essentials) and move everyone to the mountains of Idaho, where we can live the simple life and never deal with any more agencies, therapies, or doctors.

He said that I've had better ideas. :)

********************************************

The Art of Making Doctors' Appointments

No matter how many times I go through this, I expect a different result. I expect that, when I need to make three appointments, I'll make three calls, talk to three different people, and put three appointments on my calendar!

It never, ever works out that way.

Ever.

Jay's been having a tough time. He's had a bad eczema flare and he's in pain. It keeps him awake at night, and the sleep deprivation makes it harder for him to handle things during the day. He's full of anxiety and just plain unhappy.

In three weeks, he's scheduled to start a Social Skills Day Camp for kids with Autism. He is in such turmoil about this! He doesn't want to ride the bus because buses are too crowded. He doesn't want to eat lunch there because he's worried that he'll gag. (He used to have reflux but outgrew it. Apparently, he's still anxious about it.) He doesn't like to be outside because of his allergies and because the heat bothers his eczema. Gnats bother his eczema. He won't swim because pool water bothers his eczema. And on it goes.

Yesterday, I thought that I'd see if he could talk to our psychologist, thinking that maybe he could figure out a way to alleviate some of Jay's anxiety.

Our home phone decided to break. We could get incoming calls but the phone didn't ring. We couldn't make outgoing calls. So, I used my cell phone. I could talk for maybe a minute and then it would disconnect. This happened over and over, which just didn't make for a smooth phone call! I finally learned that they now have walk-in evals, which start next week, and then he'll be scheduled with the psychologist, which means no appointment before camp starts.

My next call was to his dermatologist at Children's Hospital. The receptionist informed me that the doctor had moved to Ohio. I said, "Oh no, she can't do that!" The receptionist said, "Oh yes, she just did!"

Ugh. There isn't another dermatologist there, so we'll have to go to another branch to a very popular dermatologist who doesn't have any openings until September.

Great.

Jay's sensory issues make it tough for him to deal with the eczema treatments, so I called his autism doctor, again at Children's Hospital, who helps him deal with those treatments. She didn't have any appointments. We sometimes see a different doctor, so I asked about an appointment with her. She's no longer at our branch.

They told me that appointments for September opened up at 8:00 this morning and I'd better call right at 8:00 if I wanted to get an appointment.

Yes, I know that, all too well.

I called this morning and got the first available appointment...at the end of September.

So, camp should be interesting. I just keep praying for Jay because he really is struggling. Lots of issues with the holiday and his birth parents have been coming up, too, all wrapped up into one big meltdown...

************************************************

Allergies and Asthma and Eczema...oh My!

I took GracieGirl and E to the allergist today. We borrowed a van from a friend (thank you!!) so that Nick could pick Jay up from his autism class, while I took the kids. I was a little bit nervous about E getting out of control, so I pulled Nate away from his friends to come along and help. He was not thrilled.

I love our allergist, and he always keeps the kids entertained and in line. He pretended to hypnotize E with his stethoscope, and I told him that if he pulled that off, that stethoscope was coming home with me! He said that of course E couldn't sleep; he has too much energy to sleep!

He was happy with GracieGirl, except for the eczema that covers the backs of both of her legs. He wasn't happy with E at all, saying that we need to get his asthma under better control. He started him on a new med and wants to see him in three months. He also wants to do another blood test and then possibly another egg challenge, depending on the results of the blood test.

I came home with a whoppin' 14 scripts! Fourteen meds for two little kids! Unbelievable.

E was good, for the most part. He did tell the doctor that he didn't look like a doctor; he looked like he married a man. Huh?? I finally figured out that he meant that the doctor looked like a man who was getting married because he was wearing a tie! Apparently, he didn't look like a doctor because he doesn't wear a lab coat!

E did run out of the office as I was scheduling his next appointment, and then tore out of the building as we left. Couldn't have done it without Nate...

**************************************

Doctors and More Doctors!

We've been in full swing with doctor's appointments again. We'd switched allergists, thinking that it would be easier to have all of the children's doctors at Children's Hospital, but we decided to go back to our old allergist. Nate and E went this week and GracieGirl and J are going tomorrow. The allergist said that Nate's asthma is under control but his allergies are bothering him. E's report wasn't as good, and the poor little guy came home with a stack of prescriptions!

Jay saw the dermatologist again, too, and she thinks that some of his problems with nighttime scratching may be behavioral. I'm not sure why she would think that, since the majority of his body is covered with eczema, and I'd kind of think that that's why he's scratching! She wants us to make an appointment with a behavioral specialist through Jay's developmental pediatrician at the autism center. We'll try anything that might help; I just to get to it on my To Do list yet!

Jay had a sleep study a few nights ago. He had some trouble dealing with all of the wires, but he loved the room...the bed with a sleep number mattress, the big, comfy quilt, the large flat screen TV, and lots of snacks. Once he was settled in, he lay back and said, "Yep, I could definitely get used to this!" He paused for a second and added, "It's not because of the TV or even the snacks; it's because there's a bed in here for you, too!" He's so sweet...

He brought his sleeping bag with him because he practically lives in it at home, so that helped comfort him a bit.

Jay in his favorite sleeping bag. I don't know how he does it,
but he walks in it and goes up and down stairs in it!

So, I was selfishly thinking that I might get a decent night's sleep, being away from the nighttime drama here at home. I went to bed at around 11:00pm, got comfy, closed my eyes...and Jay's monitor started going off! The tech came in and turned it off, and once again, I settled in. Three minutes later, it went off again! This time, both techs came in, turned on the lights, started replacing parts on the machine, and finally left. I don't know what the problem was, but this went on most of the night! I was feeling far from refreshed when they woke us up at 6:00am! I'd begged asked for late checkout, just as I'd done during my sleep study, and once again, I was turned down! ;)

I was feeling sad this weekend because, for the first time ever, we missed Sesame Place with the Variety Club. E is really struggling with his asthma, so he couldn't go. He's had a few rough days (and nights!) between the asthma, allergies, hives all over his arm one night, and the little, itchy bumps that are covering his entire back! The allergist ordered blood work for him to check on some of his allergies. Nick thought that these symptoms were perhaps linked to the Cyclic Neutropenia, which makes his white count low every three weeks. If this is the low period, maybe his little body just can't handle everything. I don't know, but I sure would like to help him feel better!

Now we're just continuing to pray that E stays out of the hospital. The treatments aren't helping much, and tonight his breathing was really labored. I still don't feel confident about knowing exactly when he needs to go to the hospital, but Nick is confident that he knows. Prayers greatly appreciated for our little guy!

E decided that the only way to feed the birds is to dump the seed
all over the place, roll in it, pull up leaves and sticks,
and then sit and call the birds to come eat!


*************************************

A Visit to See the Allergist

Nick and I took Jay and E in to Children's Hospital today to see a new allergist. We were gone for seven hours, and spent 3 1/2 hours in the office! Thankfully, the boys were well behaved, even as it approached the magic meltdown hour of 5:00pm.

Jay was tested for 13 different things. I really wish they'd given me a list of what those 13 things were. He came up quite allergic to shellfish, cats, and trees.

I think that E was tested for more than 20 things. His positives were peanuts, tree nuts (especially cashews), eggs, sesame, shellfish, fish, cats, dogs, horses, trees, and grasses. We already knew about some of those things, but he'd tested negative to horses in the past. We'd been avoiding sesame and all fish just because they're highly allergenic, and now I'm glad that we did!

We'd originally been told that kids generally aren't tested for environmental allergies until they're at least three years old, but they told us today that they've started seeing environmental allergies in younger children, so they went ahead and tested E after we told the doctor about the time he was sitting out in the grass and came in with hives all over the back of his legs!

Both boys were very brave, even though I was cringing as I saw the welts on little E's arms. A couple of them (peanuts and cashews) were so large that they merged with the welts next to them!

We walked away with 13 prescriptions, and now have two children carrying EpiPens!

The doctor wants to see E again in September since his asthma has gotten bad enough in past Septembers that he had to be hospitalized.

She wants Jay to go to a clinic at the hospital that they hold once a month where both allergist and dermatologists are present, and work together to come up with solutions for kids with allergies and eczema. I'm excited about that and am praying that they can help my itchy little guy!

*************************************

Living with Food Allergies

As Food Allergy Awareness Week wraps up, I thought I'd share, as others have done, a bit about how food allergies affect our life. Most days, we just go with the flow, but there are times when I stop and think about how much easier our lives would be if there was a cure for food allergies.

I was allergic to hundreds of things when I was growing up, but anaphylaxis wasn't part of the picture, so I had no idea what living with life-threatening food allergies was like.

In our house, Jay is allergic to wheat and gluten (rye, barley, and most oats) and dairy. The nutritionist also has him off of soy, refined sugars, and most carbs. GracieGirl is allergic to wheat and gluten. E is allergic to peanuts and tree nuts (anaphylactic), eggs, and dairy. Nate was tested as a toddler and no foods showed up, but I suspect a dairy allergy or intolerance.

Jay has severe eczema, E has eczema and asthma, and Nate has asthma.

We make almost all of our food from scratch. There are some prepared foods we can buy but they're expensive and often don't taste as good as homemade.

Baking is an adventure. We have a cabinet and freezer full of different flours. We can't use just one flour when we bake; we have to combine several flours, such as rice, sorghum, tapioca, and potato starch. We use xanthan gum to keep baked goods from becoming a crumbly mess, and powdered egg replacer as a binder. We use olive or coconut oil instead of butter and rice milk instead of cows' milk.

We never have peanuts or tree nuts in the house. We do have eggs, and it's a bit stressful keeping E away from them. E doesn't have anaphylaxis to eggs, but he did have an immediate reaction after eating them, so we don't know what a second reaction might be like. It's sometimes challenging, especially when we're rushing, to remember who eats what. GracieGirl can't have the Ezekiel Bread; she has to have the brown rice rolls. E can't have the rolls because they have egg whites in them. Jay doesn't like meats or most vegetables and that's all he's supposed to be eating right now. Nate can't stand rice milk or gluten-free bread.

On the rare occasions that we find a meal, or even a single food, that everyone likes and can eat, it's cause for celebration!

We always plan ahead. When we leave the house, we pack food and drinks for everyone. We don't have the option of stopping to pick something up if we run late and get hungry.

We read labels, read labels, and just when we think we've read enough, we read more labels! Product ingredients change, so, just because we bought something that was safe one time doesn't mean it will be safe the next time we go to buy it. We also avoid products that were processed in facilities or on equipment that processes peanuts or tree nuts. Studies have shown that a full 10% of foods manufactured on shared equipment will actually have nuts in them.

We avoid some homeschool events, especially those centered around a meal or where a lot of snacks will be served. We opt for more of the outdoor events and field trips.

Family get-togethers are difficult. Jay has a tough time watching his cousin eat pizza and chicken nuggets and desserts that he loves but can't have. When possible, we bring our own substitutions so that he doesn't feel as left out, but it's not always possible and it usually doesn't look as good to him as the stuff his cousin is eating!

Baseball games and flying are two other things that we avoid because of nut allergies. We always carry wipes, and when we go shopping, we wipe down the cart before putting E in it, in case the child before him was eating nuts. E is at that age when he puts everything in his mouth and I worry that he'll pick up a piece of discarded candy at the park that has nuts in it. He also believes that all cups and water bottles must be his, and I worry that he'll grab one that may belong to someone who was eating nuts before drinking from it.

I'm also concerned about people not taking the children's allergies seriously, and/or thinking that we're overreacting or being overprotective. With Jay and GracieGirl, they'll get sick if they eat foods they're allergic to, but with E, he could die from eating nuts or peanuts. He doesn't have to eat a Reece's Cup; he could react from getting a kiss from someone who had eaten peanuts or from eating food that had been served with a spoon that had just a trace of nuts on it.

E can never be without his EpiPen. Thankfully, we have never had to use it. It scares me to think of using it on him, but I'm confident that I would do what I had to do if he was having an anaphylactic reaction. We have EpiPens in a bag by the door, along with a bottle of Benadryl. There are EpiPens and Benadryl in the kitchen and upstairs in our bathroom. We always have them on hand, in their designated spots, and we always make sure they're in date.

E is rarely away from us, and I wonder about sending him to friends' houses when he gets older. It's hard enough for us to keep on top of reading labels all the time; can we expect others to do it vigilantly? What if his friend gives him something, without the friend's mother knowing?

Jay, who is almost nine, knows what he can and cannot eat, and he's good at telling people that he can't eat something. GracieGirl is good, too; she knows that she can't eat bread or pasta or cookies or pizza at people's houses, but I sure can't expect her to know about all of the hidden sources of wheat. All of the kids are very protective of E and will quickly tell family or friends not to feed him certain things or eat nuts near him.

I don't worry about E all the time, but I do have concerns when he suddenly develops hives and I have no idea what caused them. When his eczema or his asthma flares, I wonder if a food allergy is involved. Recently, his eyes have been swelling and he screams and rubs them frantically. He's also been sneezing a lot, after which he also screams and holds his ears. I'm also concerned about other allergies to foods he hasn't been tested for. We haven't given him fish or sesame seeds, for instance, because they're highly allergenic foods, and we don't know if he'll react.

Maybe this is sounding whiny, but I'm not complaining about it. We do what we have to do. Yes, it's a pain, and yes, if I had a choice, I'd certainly prefer that the kids not have food allergies.

On my Fantasy Food Allergy Wish List, if I couldn't get a cure for food allergies, my next requests would be a freezer full of allergy-safe, delicious convenience foods that all of the kids loved, and a healthy, allergy-free fast food restaurant in every town.

I can dream, can't I?? :)

**********************