Wednesday, May 30, 2012

A Better Day

I really do feel bad for being so negative yesterday. I not only unloaded here, but I also opened wide the floodgates on my poor mom when she stopped by with a box of Cal Ben's Soap products and then again in an email to my unsuspecting little brother. I'm just lucky these people put up with me!

 I know that when I allow my emotions (and my wild imagination) to get the best of me, I open the door to believe the worst and I make mountains out of molehills.  I know there are countless childhood diseases that are much worse than what we are dealing with. Sam does really well during the day, when his natural cortisone levels are up. I am grateful for that. So far it has been the nights that are hard, and nights are when a mommy of 3 young children needs to be sleeping. The chronic lack of sleep does sometimes place my good judgement and ability to honestly and unemotionally asses the situation in serious jeopardy.  We also have several other significant stressors in our lives right now that weigh on me and leach some of the energy and emotional reserve I might otherwise have for Sam.  I tend to take way too much on myself and spread myself too thin, and sometimes that makes every difficult situation seem ten times more challenging than it probably needs to be. 

Last night I sent out an email to family and a few friends requesting help to find some medical advice on what to do next for Sam.  I received so many emails back, some with recommendations for a specific practice or specialist, some with encouraging words, some promising prayers.  Yesterday I was feeling terribly alone in all of this - the hubs can't be much help because he works long hours in the busy season of his job and when he comes home is exhausted and does not really see or deal with Sam in the difficult hours of the night.  I do not begrudge him that at all, I would rather he sleep  because he needs to be on his game at work and I can sometimes squeeze in naps during the day if I really need one. (Am I the only mother who shamelessly uses Netflix to babysit my kids when I need a break!?)  But as I was saying, I was feeling alone, and today after reading the emails, I feel lifted by the support and I'm sure the few prayers that have already been offered are reaching me and buoying me up today. Thank you. I also feel a greater sense of peace, much less frantic.  I feel more peaceful that things will be okay and Heavenly Father is looking out for us. I am comforted to know that He cares about me and my trials, even if they might be small compared to the trials others face, He knows my heart and my personal weaknesses and flaws and understands my pain at seeing my child struggle. I also know that He sends other people into our lives to bless us sometimes, to help us feel His love and uses their hands as His own.  

Tuesday, May 29, 2012

just BLAH.

I've super washed all of Sam's clothes, towels, bedding, and most of ours, at least 10 times per load already.  I have scoured our tub with soap, washed his body in it every night, rinsed well, dried well, followed by Aquaphor.   I've kept him in long pants and sleeves and socks up to his thighs for over a week now to keep him from rubbing extensively against the carpet.  His skin does not look any better. It looks worse. It itches insanely at night. It still looks like it did before the last course of steroids.  The last course of steroids did not even help much at all.

I still think soap is a good idea, if it doesn't solve Sam's eczema it can only help. A child with sick skin does not need harsh chemicals. So I'm not giving up soap. But I am beginning to wonder if I imagined the "incredible" results of our first "soap test".  Switching to soap has for sure improved the eczema on my hand 100%. It hasn't bothered me for over a week. So that's good. But I didn't do all of this for my little ol' hand. I wanted to see those results in Sam! Shouldn't we have seen even a little improvement by now?  I am beginning to wonder- did I see what I wanted to see when I checked Sam's legs a few hours after washing him with soap that first time? Because I have not been able to duplicate those results since, and I've done a lot of soap washing!!

I think when you have a sick child, you grasp on to any hope you can and hurl yourself at it full force- at least I do. You believe almost anything. Anything to give your mind even a shred of hope to pull you out of the despair and madness of not having an answer. I'm sure I've imagined many things that have not been real, in the name of hope and sanity. I know I've imagined Sam was looking better many times because of a certain diet we were doing, but looking back if I'm honest, it was really just the drugs.

Can't remember how many times now I have read something online about how some stranger I don't even know cured their kid of eczema, and I think, this is our answer! It makes perfect sense! That kid sounds just like Sam! I take hold, start preaching it everywhere I go, believe with all my might it will work and make everything better. I have to believe those things, its what keeps me going. Because all I want is for everything to be better! Actually right now I would take even a little bit better!  All I want is for my baby not to suffer anymore. All I want is to see some improvement, to have hope that will last more than a week or two. All I want is to stop feeling confused because every other week I happen upon a theory that is completely 180 degrees the opposite of what I previously believed or understood, but that apparently has "cured" enough people who are now urging me to go that way instead of the way I was going.

I am so tired, very nearly depressed, desperate for answers, and it feels like all my prayers are bouncing right off the ceiling. I have gone from feeling pretty confident a few days ago in what I was doing for Sam, to questioning everything and feeling incredibly unsettled and anxious. I am probably being overly dramatic, over anxious, and completely irrational, but who knew eczema and allergies could be so maddening!? I always thought this would be the least of ailments that could strike my child. Eczema is "just dry skin" right?  Just slap some moisturizer on it and it will get better. Allergies? Just keep them from the thing they are allergic to, right? No big deal!! Ha. No, this truly sucks (please forgive me, that is actually the worst my language gets, you know I am losing it when I say or type the word "sucks") and the worst part is that nobody seems to have answers. Sam's doctor and allergist are clearly just as confused as I am. "There is no reason for eczema!"  Eczema just IS.  Apparently.  It has increased by crazy numbers over the past several decades, there must be a reason, why hasn't anyone been able to figure this out yet!

So very sorry, innocent accosted readers. I wish I could say I'm not always this negative but that's kind of the personality battle I've been fighting my entire life. Negativity sure makes trials harder, I wish I could figure out how to be more optimistic! I really do try! I've resolved so many times to be a more positive person! Someone recently suggested to me that eczema is caused largely by stress and emotions, perhaps Sam is not getting better because I am constantly projecting my negative emotions onto him?? Who knows.

This all has been on the verge of spilling over all day long and what just happened is me unloading so I can get some sleep before Sam wakes up crying and scratching himself like mad.

Good night.

Saturday, May 26, 2012

Maybe the carpet is evil.


So... if money were not an issue, I would totally buy some of these adorable pajamas from the Cotton Comfort line of clothing made especially for kids like Sam with eczema. These look so awesome!  No socks to pull off, 100% gentle cotton, flat non-irritating seams, attached mitten to prevent nighttime scratching, so soft.  Sadly these are quite costly and they aren't located in the US either. Boo.

Each day now I try to dress Sam to protect him from our carpet. It might be 80 degrees in GA but Sam is in long sleeves and long pants in the house, with crew socks pulled up to his knees over his pant legs. But who am I kidding, those clothes do not stay the way I arrange them. He's a little monkey! He rolls around and climbs and falls and wrestles with his siblings. He pulls his socks off any chance he gets, his pant legs get pushed up, his shirt comes up over his pudgy little belly, and by night time all of these areas are irritated.  He plays on and is in contact with the carpet all day long.  He is almost two, there is really no keeping him off of it.

Why am I so concerned about the carpet? Well, when we moved into our town home our landlord told us ours was the last unit that had not been renovated with new carpet and tile. We were okay with that at the time, we had to move quickly and could not wait for another unit.  I have since learned this carpet is probably 7 to 10 years old.  Who knows how many times it has been "cleaned" with harsh chemical cleaners. Not only that, who knows how much mold and dust is embedded deep in the fibers?! As I've learned from studying the Solve Eczema website, dust is made mostly of human skin cells and hair and lint, which for probably 95% of humans walking around, are covered in detergent residues from our laundry solutions, lotions, shampoos, deodorant, etc.  So for my purposes, dust = detergent.  It's no wonder, if my suspicions are correct, that his little legs and feet and arms up are flaming red by the end of every day after rubbing up on that carpet. (And I'm sure this is the case with our furniture too, which are third generation hand me downs).

I may have already posted this picture in a previous post, but for the purpose of illustrating my point, here it is again. Notice where his eczema is so much worse. Now, I should interject here that I do still believe Sam has a fair amount of ingestion related eczema. But it is quite obvious from these photos that those arms and legs are largely contact eczema. Otherwise they wouldn't follow his clothing line so precisely.

Another thing to note here is the area where the collar of his shirt would have been rubbing against his skin. Apparently synthetic materials in the collar of an otherwise 100% cotton t-shirt don't have to be listed as such, and those synthetic fibers retain higher levels of detergent. Another clue pointing towards detergent sensitivity.

As a side note... one of the first places on Sam's body to show severe eczema flare was the tops of his feet, around 6 months old. He'd always had it on his face, arms, pretty much everywhere but it was a scant, lacy rash (like on his belly above... you can barely see the eczema but it is still there).  His feet though were constantly bright red and irritated and I could not for the life of me figure out why it would be just his feet that were severely inflamed. Well now it makes sense, that was around the time he started army crawling and rolling around on the floor, wearing longer clothing in the winter but no socks. So it was just the tops of his feet being exposed constantly to the carpet. 

One last thought for tonight. I actually first came across the solve eczema website last fall, when Sam's eczema first started getting really bad and I was desperate for answers. I did a lot of research online and came across the website about how this mother traced her son's eczema to detergents and got rid of them all. I read the entire website and even thought about it for a few days. But in the end I thought no, Sam's eczema is definitely food allergy related. I was just starting to see an allergist, and we were working towards getting his skin clear for an allergy test, and I was so sure that would give me all the answers I needed. In comparison, the detergent thing sounded like so much work. So we did lots of elimination diets and food experiments all throughout the fall. I learned a few things to stay away from: Nuts (he's anaphylactic with those), dairy, citrus, tomatoes, oatmeal, bananas. Eliminating all those things did help, but Sam's arms and legs still looked like he'd been attacked by a colony of red ants.

It was not until two weeks ago that I was reminded of the website again.  I was at Kroger with all the kids late at night picking up some medicine for Sam. Adam was working late and Sam was too itchy and uncomfortable to sleep, and I had only just realized after bath time that we were out Vanicream, ointment, and Attarax liquid.  So I took him to the store in his jammies and we sat in the pharmacy area waiting for the prescriptions.  It is interesting how much worse Sam's eczema can appear in various lighting. The flourescent lighting in this particular area of the store, combined with how flared the skin was already after a bath, made for some truly horrific looking skin. I had Sam on my lap and he was busy taking his socks off repeatedly while I repeatedly put them back on. Finally I gave up and let him pull his pant legs up and scratch away. Sometimes that's easier than fighting him.

There was a man sitting not even a foot away from us and I saw that he was staring and staring at Sam's rashed skin. Finally he says to me with some alarm in his voice:  "It's the soap lady. The socks are eating his foot up! You need different soap." I told him we had already switched detergents twice, and it did not help, so that wasn't the issue. I informed him it was food allergies, and ended the conversation. He just kept staring like he didn't believe me and what I had said was the most ridiculous thing ever.

I was tempted to be annoyed with him. How dare he sit there and try to diagnose Sam after watching him for less than two minutes, while I had spent months working on solving this problem with blood, sweat, and tears. Did he think I was sitting by doing nothing while my son suffered?

And yet I could not stop thinking about the weak explanation I had just given him. Was I really convinced the "soap" as he called it was not an issue?  Sure we had switched detergents to milder formulations twice. First to Dreft, then to All Free and Clear.  And it did not help. But that did not mean it wasn't a detergent problem. Because both of those laundry detergents, while not as harsh as others, are still detergents! The man had called it soap, and its true that these days the terms are commercially interchangeable. It was while I was thinking all these thoughts that an idea from A.J. Lumsdaine, the solve-eczema mom, pushed its way into the forefront of my mind. Describing her own light bulb moment she had written something to this effect: Detergent and true soap are two distinctly different chemical classes. They are not the same. They have different properties. They behave differently. 

Yes, I had tried switching detergents. But I'd never tried switching to soap. Really, if a child is sensitive to detergent, how does it make sense to switch to another detergent?

Maybe he's right. Maybe the socks are eating Sam's feet up, because maybe he can't tolerate any detergent at all... not even the mild kind for babies. 

From that point on I could not shake the thought from my mind. As soon as the kids were in bed that night I went in search of the website and read everything again. A few days later I did the soap test, saw enough of a change to know we had to pursue this, and now here we are on this journey.

To the rude pharmacy man, thank you and bless you, wherever you are. :)

Friday, May 25, 2012

Slow Going

I wrote last week about superwashing the first few loads of laundry 5 or 6 times each. Now I don't think that was enough. Even with Sam on Orapred, he has been itching at night and breaking out in a fine rash even though everything he touches after an evening bath was superwashed in soap: towel, jammies, bedsheets. Maybe there is still detergent in the tub, or I'm not washing it off his skin well enough, or there is still a fair amount left in the fabrics.  Maybe its his diet.  We were doing Dr. Pagano's Healing Psoriasis diet for a couple of weeks and I swear his chest and cheeks cleared from that effort but I couldn't keep it up long enough to prove a direct cause and effect.  The diet was quite costly.  In fact lately we've had to break pretty much all the rules for the Pagano diet simply because our budget doesn't exactly allow for a diet requiring specialty foods like goat milk and yogurt, salmon, gluten-free grains and lots of green. (Yes, when you are trying to do green smoothies everyday, produce actually gets very expensive. It's sad that eating in a healing manner has to break the bank.)

I haven't been able to do much more in the way of soap since those first couple of days. Everyone being so sick last week got us off track, and then I ran out of soap so I'm sitting here with piles of laundry everywhere that I refuse to wash in detergent. I am lucky to have some family members who care about Sam enough to have helped with ordering some soap from Cal Ben Soap Company and that box is on its way! For now there is not much I can do to further this effort. In fact, I did give in in the dish department when hot water rinses weren't getting my dishes clean. I started using my box of powdered detergent in the dishwasher again (though now I cringe everytime I pour it in) so we will at least have clean dishes until the soap arrives.  It is interesting to note that the first time I used the dish detergent again, my hand eczema immediately returned and started itching like crazy.  However after washing my hands with soap (we still have some in the bathrooms for hand washing) the itching stopped immediately.  The connection is definitely there. 

I'm starting to realize this change will not be immediate, and especially on our limited resources, seeing results will likely take some time. We just have to do what we can when we can. Most of our clothing is several years old or hand-me-downs and will probably need to be washed 10 times to get the residues out. That is a lot of washing, water, and expense when you have 5 people, their bedding, the extra sheets and bedding and towels. 

Sorry, I know I have done a lot of whining in this post but one of the purposes of this blog for me is to record my experience through all of this including the ups and downs and setbacks and frustrations.  Hope to be able to post some good news and progress soon. 

Tuesday, May 22, 2012

Hand Foot and Mouth... Ick.

(Warning: Potentially gross body stuff follows, if you aren't into that kind of thing you'll want to skip this post!)

Hand, Foot, and Mouth virus is what my kids have been passing around to each other. After reading up on all the various fever/rash combinations it could have been I am convinced and mother-diagnosing them all!  I told Adam this is what it must be and he responded "Isn't that an animal disease?"   No, he was thinking of Hoof and Mouth (I think) but this human virus does conjure up disturbing mental images just by saying its name, doesn't it?  It is actually quite common right now  though and being passed rapidly among nursery and preschool aged children. Older children and adults don't seem to contract it as much in the form of signature sores.  Case in point, William and Sam both got the hand, foot, and mouth sores with a fever, but my daughter who is 6 only had a fever with no rash.

I'd mentioned in a previous post that William only got a  sprinkling of spots on his arms, legs, feet and back of throat. Sam... poor child erupted in the sores and spots covering every centimeter of his legs and arms.  I have never seen anything like it. I am convinced that had his skin been normal and healthy at the onset we would not have had this severe outbreak but something about the skin already being so fragile and irritated when the virus struck really changed the outcome for him.

The progression of this strange outbreak has been interesting to observe. I could find no explanation online for this. For my own record:

Day 1:  As illustrated by the photos I posted a couple of days ago, Sam woke up with red, spotty, scaly rash all over the arms, legs, and mouth vicinity, on top of his regular eczema.

Day 2: The spots became even rougher in texture, some turned purple, others dark red and that night was just as sleepless as the first.

Day 3:  The majority of the spots started to turn a faded brownish color and individual scales of skin (hundreds of them, literally comprising the entire outer layer of skin in the effected areas) started to flake away from the body.  This stage was very painful because the outer perimeter of the scales would be jagged and hard flaking away from the body but the centers were still attached to the arm or leg with very raw skin underneath. The scales would snag on his clothing and either slough off or be ripped off prematurely, leaving pink raw skin underneath.   Every time I would take his clothing off to change it, little piles of sloughed off skin would pour out of his clothing like salt from salt shaker.  That night I carefully wrapped his feet and legs in gauze over ointment and that seemed to help soften some of the remaining scales and allow him to sleep with less irritation.

Day 4: (Today)  Most of the leg and arms now feel smooth with 97% of the "sick" dead scales sloughed off.  His legs still have that red-spotted look from where the sores and rash left marks and divets in the skin. His knees are a bit raw and pink, as are his feet. The area immediately around his toes, bottom of foot and heels is still very thick and scaly with many cracks and raw pinkish red areas. I am beginning to have some concern about infection on his feet. I will watch for improvements tomorrow. Tonight I let him soak in warm water before covering his feet in triple antibiotic ointment and wrapping in several layers of gauze under cotton socks for bed.  He is sleeping well.

I have had Sam back on Orapred from Day 1 because of the severity of this rash, as well as Attarax and children's pain/fever reliever so he is pretty drugged up and in these situations I am happy to have medicinal help to heal his skin and prevent infection. I am anxious to see his skin clear and smooth and I know the oral steroids will do the trick as they always have in the past. Once the skin is clear I will refocus on the long-term project of cleaning up our home environment and seeking out other natural healing methods that might help us reach our goal.

Sunday, May 20, 2012

5 days after switching to REAL soap...a light bulb moment.

And the eczema on my right hand is GONE!! I can't believe it.  I am so excited about this!!   I have had it for over four years and it completely covered three fingers, has always been itchy, red, blistery, bumpy, painful, and I would have to slather it in lotion just to be able to use those fingers because the skin was so tight and dry which often led to cracking and bleeding.  And just like that, after getting rid of my synthetic cleaning products and using  a REAL soap (made from true plant oils) for not even a week - and no lotion or moisturizers of any kind either mind you- my eczema is already GONE and the skin on those fingers is healthy and supple.

Just soap!

I'm pretty amazed. One thing A. Lumsdaine (again, author or says on her website that is SO interesting is that the more moisturizers and moisturizing ingredients we use on our skin, the drier it will be. It is counter-intuitive, but dry skin is not so much about what is stripped from the skin by washing as what is left on when we wash or moisturize (this is Lumsdaine's Law!).  It's like when you use too much chapstick in the dry winter months and pretty soon your lips are worse than they were to begin with. The only way to fix the problem is to stop using chapstick. It hurts for awhile, but then, magically, our own body works to normalize the skin on our lips.

Our skin has the ability to keep itself moist and supple (gasp!), but we mess with that when we put so many creams and things on it. (And when we use harsh chemicals in our environment that cling to the skin!)  From what I understand, leaving a thin layer of anything on the skin increases permeability, ultimately leading to water loss.  So even though you feel immediately more moisturized using creams or not drying well and leaving some water on the skin, you are ultimately adding to the dryness of your skin. The best thing is to wash your body and hands with a good REAL soap (real soap is made from animal or vegetable fats, NOT synthetic ingredients ) and dry very well.  Then leave your hands alone. Do not use lotion.  Then the skin can take care of itself, and in a few days, your skin will not feel dry but very normal. I can now attest to this as I have used only soap and no lotion and my hands do feel normal and not dry at all. The reason soap is better is that the properties of the animal and vegetable fats used in soap have the same (or similar? can't remember) properties as our own skin.  Synthetic stuff does not, and it damages.

The sad thing about this truth is that doctors treating adults and children with severe eczema are actually prescribing methods that exacerbate eczema  and make it so much worse.  What have I been told to do with Sam's skin since he was born?  Basically to bathe him every day, then barely pat him dry so as to purposely leave some water on the skin (for moisture!) then apply a thick (chemical-laden) moisturizer over his damp skin and put his pajamas on top of that. Repeat moisturizing several times a day.

Ugh... so that is what I did, and what so many other moms do (I know b/c I've read hundreds of forums on eczema!) and we were all left wondering, why is the skin still so dry when we are moisturizing so much?! Why is NO moisture restored? Why is the skin not healing??  So we went back to the doctor and the doctor basically told us:

 "Stop trying to solve this. You can't.  Don't you get it? Eczema is not a food allergy issue or an environment issue, something is just wrong with your child's skin!  You can't do anything about it. There is no cure. You cannot fix this. Stop trying!!  But it will be okay, here is a prescription for steroids that you should slather on your child's delicate skin twice a day  for the rest of his life (or daily allergy shots, etc. etc.) and just try not to think about the risks and side effects."

It is so sad that the medical world has this so backwards because eczema is such a common problem! It might not be cancer or something immediately life-threatening but children like Sam who have it all over their bodies do take a huge hit to their comfort and quality of life from this skin condition. Severe eczema can become dangerous when the skin is broken and infected. With my Sam there is never a break from the rash unless he is drugged up. It's a big deal, and eczema is only becoming more common.  I can only hope that the people with the power to do so will start paying more attention and stop using the excuse that eczema is totally isolated with no cause. There is obviously a cause!  Whether detergent or foods or some other environmental chemical (I'm not saying its always detergent but I'm sure its a big one), something is irritating the skin and reason follows that if you can isolate that reason you can eliminate it!!

By the way, I am not by nature an aggressive person and I don't have anything against doctors or modern medicine in general, I take my babies to the doctor often when they are sick and we often use prescription drugs, antibiotics, etc. I just believe on this particular issue of eczema and allergies and especially severe eczema, the medical world is not only way off but actually making detrimental recommendations across the board.  They are hurting people, especially when they tell mothers point blank to STOP looking for solutions. Children are suffering needlessly, and they don't have to if doctors would put away their ancient medical textbooks and use just a little good sense, or at the very least be open to the idea of others using their own good sense to search out real solutions.

Rant done.

Friday, May 18, 2012

Sammy's Skin May 18

Viral infection on top of regular eczema outbreak is a nasty combination.  The small red circles on his feet are areas where he has dug holes in the skin with his nails. Even though I cut his nails very short he still manages to break the skin. Click to enlarge and you can also see the bumps and blisters.

A Rough Night

We saw the doc yesterday (our pediatrician who I love so much...ok, not really) and he confirmed the boys have a virus and that it is NOT strep.  He couldn't tell me what it was, just that there is a lot going around right now with various rashes and that's there is nothing we can do but sit and wait for it to pass.

William's fever was gone last night and while his rash got worse over night, it did not bother him at all and he slept perfectly fine.

Sam on the other hand - wow, I think that really might have been the worst night of my life so far and it was definitely the worst night of his.  After bath time (why do things always get worse after a bath!?) his skin was so swollen it literally was raised about an inch in certain places on his body.  I had to really suck it up to keep from bursting out in tears right then and there. Knowing he would probably struggle to sleep I gave him not only ibuprofen but Attarax for itching AND piled on the hydrocortisone cream for good measure.  I've been trying to stay away from drugs but this was a skin emergency.

 Well, all of that helped for about 3 hours, but at midnight Sam woke up and from about 12:30 until 5:30 this morning he did nothing but scream, thrash around, try to rip off his clothing to scratch and yell "Mama! Mama! Mama!" over and over while I sat helplessly by.  There was absolutely nothing I could do but cry with him and keep praying that the itching and burning would stop. I must have dozed off momentarily a few times because I would periodically roll over to find him with his socks and pants off, scratching ferociously at his little feet and ankles, which are covered in dry blood this morning.  I can only imagine what the feeling would be and I think it must be the same feeling as your skin being literally on fire.  I kept wondering if I should take him to the ER but I reasoned with myself that they would only tell me what the doctor had told me, and I'd already given him all the drugs I could and they weren't helping. It was one of those things we'd just have to suffer through together.

Sam fell asleep early this morning and is still sleeping now, well after noon.  I just woke up myself. All I remember is my husband coming in this morning (he slept on the couch last night with earplugs b/c he had meetings today) and I begged him to take a sick day and stay with the two oldest (3 and 6) so I could sleep, but he couldn't. He did however call Grandma and got the kids ready and took them to her house. I'm assuming this is what happened, because the house has been quiet all morning.


I'd read that some children with severe eczema had almost miracle reactions, or at the very least, visibly improved skin within just a few days of implementing the soap switch.  I know yesterday was the first day, but after so many measures to try and protect Sam from detergent residue last night I thought for sure he'd wake up looking maybe a little bit better.

In fact, his skin today was the worst I have seen it. It FELT the worst too, all thick and raised and far more dry than I knew human skin could feel. It felt very much like reptile skin, especially his legs. The whole surface of his skin was bumpy, blistery, and angry red with some open sores. At first I thought he must be reacting to the peppermint oil or one of the other oils in the Dr. Bronner's soap. But that didn't make sense because the night before last he had no problem with being washed in the peppermint soap.  I then remembered two things:  1) Solve Eczema. org said the transition phase between detergent and soap can be even more irritating than detergent was alone, and not to freak out, it would pass  2) Sam had a fever the night before, and that fact combined with slathering ointment on him and then long clothing after a warm bath could very well lead to prickly heat rash which is common in babies. 

Later in the morning I realized his brother William also had broken out in a little clusters of red bumps and sores on his arms and legs, and he'd had the fever longer so I assume it is a virus one caught from the other.  If Sam's rash is of the same origin it makes sense it would look and behave ever so much worse on his already damaged (eczema) skin. So there could be a number of factors influencing Sam's skin today to explain why it looks so awful. 

I just need to keep moving forward. I was complaining to my mom today about not seeing a change, and she reminded me it has only been 2 days!! I knew going into this it might take 4 to 6 months to see real improvement, yet I get antsy and impatient so quickly and want to know the beginning from the end, whether this effort will pay off or not. 

Wednesday, May 16, 2012

Starting the Soap Switch

So we've begun. Thanks to I have a clear game plan of how to start changing my home into a safe zone for Sam's skin, and I started today! Just me and my one bottle of Dr. Bronner's, we sure put a dent in things today.

Started off collecting all of the detergent products in the house (except for toothpaste, deodorant, hair gel, make-up) and putting them all away under the upstairs bathroom sink, with a childproof lock on top.  I poured out all the icky chemcially hand-soaps, rinsed the containers with scalding hot water and refilled with 1/4 Dr. Bronner's liquid soap and the rest water.

Ran first load of dishes with pure soap. Ooops.... I must have got carried away because I read later in the day online you're not supposed to put soap in a dishwasher. Haha... no suds luckily but it did leave a white residue. Oh well.  Note to self: get a soap product made specifically for automatic dishwashers!

Started my first "superwash" load. I did towels (so I'd have something safe to dry Sam with out of a bath), two crib sheets, and rags. Later realized I should have thrown a pair of his pajamas in.   This first superwash took from about 9am to 2pm.  I did two soap & baking soda washes followed by one plain soap wash followed by one vinegar wash (probably wasn't necessary) followed by two hot water washes.  I will not always have to wash clothes this way, only the first time because of so many years of detergent build-up in the fibers, one washing to begin is not enough to remove the irritating chemicals.

While my first load was going through all those cycles, I scrubbed the dryer inside and outside, as well as the top and outside of the washer with soap and rinsed with hot water.  I also cleaned all my kitchen surfaces with soap, and sanitized a laundry basket that the towels would go into.

While the first load was drying, I started my second superwash load. This time it was all Sam's clothes since that is most important, before anyone else's clothing or bedding.  I didn't want to do as many washes this time so I just did two soap and baking soda washes, one soap wash, and two hot water washes. (Left out the vinegar wash).

That's a daily total of 11 loads of laundry! I don't even wanna see my laundry bill next month.

While the second load dried I took my Dr. Bronner's magic soap and scrubbed the entire upstairs bathroom so it would be detergent free for Sam during and after his bath. I took a lot of time on the tub to make sure it was especially clean.

Finally, I got Sam's bed ready with a dust- and allergy-proof cover that arrived in the mail today (thanks to DMOPC!) and put on one of the newly soap-washed crib sheets.

Bath time was great! I felt really confident while washing Sam knowing the tub was so clean, and hopefully no detergent residue to interact with his poor skin and set him on fire. His skin was looking terrible by the end of the day today because he really got around on the floor and furniture and soaked up those harsh chemicals. In the bath it was still very red but did not flare up as usual.  Dried him with a safe towel, put on the Aquaphor, newly soap super-washed jammies, and down to bed in his crib.

Phew.  Long day, so much work, and so much more to do in the days and weeks to come but all day I was driven by visions of my baby boy with beautifully healed skin, and no eczema.  

The Soap Test

I have been reading and re-reading the solve eczema website for several days, trying to absorb everything.  I just really feel like this might take us there.  There being a real solution.

One of the first things she suggests to see if more work is warranted, is this Soap Test which you can read about by clicking on the link.

First I had to purchase some pure soap. I got the only product I know of available to me without ordering online which is Dr. Bronner's Pure Castile Peppermint Liquid Soap at our local Trader Joe's.  Do not purchase from that link by the way, it was seven dollars cheaper at TJs for the 32 oz bottle!  The stuff is super concentrated, you only need a few drops per spray bottle for cleaning, a little more for personal washing so its actually not more expensive than buying your regular products.

I also bought some regular paper towels which I also needed for this test.

Once home, I stood Sam up in the tub and washed the fronts of his legs really well with the pure soap, followed by a good rinse with water from the tap.  I had to be careful not to let his legs touch the tub or my clothing or a towel or anything that had detergent residue.  I just picked him straight up, dried the area well with a clean paper towel straight off the roll (not one that had been laid on a countertop- ahh, detergent everywhere!)  and then immediately applied a barrier moisturizer- in this case Aquaphor.

Then I jammied him up and put him to bed.

First thing I noticed, he didn't itch while falling asleep. That's pretty amazing in itself.  But at this point I still did not notice any difference in the physical appearance of the skin. I had to check the website again, to see how soon I should be noticing a change.  The website said:  If your child’s eczema in the test area looks markedly different after a few hours, then there is a good possibility that a contact reaction to detergents is involved; it’s a virtual certainty that a contact reaction of some sort is involved. 

So I waited a few hours, then checked him again. Much better, I thought! Not healed by any means, but definitely less red. Maybe it was my imagination, maybe its because the lighting was poor, but I thought the area did in fact look noticeably improved. So I'm going to go with that.  The idea  (I think) is that soaps remove detergents (water alone does not!) and so removing the detergent from the skin then placing the barrier on top allows the skin to start the healing process.  And maybe the fact the he didn't itch, was the start of healing. 

By morning, he was definitely a mess again. The Aquaphor wore off, he rolled around in his detergent-washed pajamas and ended up pulling up his pant legs and pulling his socks off about 4am, leaving them exposed to the detergent-washed bed sheets.  But the soap test gave me hope and I still feel in my gut this is the way to go. Looking forward to more progress!

Signs of Detergent Related Eczema

The following is a list from SolveEczema.Org . I wrote this post when I had only just discovered the website and was still contemplating detergent removal as a possible solution to Sam's eczema. In blue are my original observations as I was evaluating the list for the first time. As you can see, Sam fit almost every one of these, which is why I was so excited to pursue this course.

Site author A.J. Lumsdaine writes:

"The following signs are not necessarily unique to this sensitivity, but they may help identify it. Your baby/child may have a general detergent sensitivity if:
  • He gets eczema all over, but you use disposable diapers and the diaper area is relatively clear of eczema.  Yes! I have always wondered about this.   Supposedly the reason the diaper area stays clear is because urine is acidic and does a better job of rinsing off detergents than water.   Plus the diaper acts as a permanent barrier from detergent dust exposure. This is one of the primary signs of detergent reactive eczema. Think about this.... if the eczema were just an unavoidable genetic condition OR a symptom of food allergy, why would it respect an external diaper barrier? In both cases, the eczema would come from inside and not respect external barriers.  But since it does, this is a pretty good sign the eczema is due to an environmental cause. 
  • His eczema changes noticeably, either for better or worse, following a bath or shower.
    YES!  In fact I am pretty sure any one else who sees Sam on a daily basis might not think he has it that bad, because the eczema kind of fades during the day and then BAM- flares up like wildfire at bath time.  He sure has a horrible time sleeping! I am really the only one who sees him this way.
  • His eczema sometimes seems to fluctuate wildly from day to day.  Yes, and I have wondered about this too.  So much of this makes much more sense in light of a detergent sensitivity than a food allergy.
  • Washing just with water can sometimes cause an outbreak.  ALWAYS.
  • He gets particularly bad eczema on his cheeks or chin where he rests it on your shoulder or against your hair when you hold him. Yep.
  • His pattern of eczema from foods is inconsistent or follows strange lines: he might seem allergic to cooked or canned foods but not to fresh ones, or he reacts more to cooked foods than to raw ones (if it’s a protein allergy, it should logically be the other way around).  Oh my heck, this has been so confusing.  His nut allergies when they happen are so clear cut, but everything else, and I'm sure he still has some food allergies, none of it has been obvious or easy to trace.
  • His eczema is worse on exposed skin, especially as he crawls around during the day.
    Yes! Yes! How did I just start noticing this? See post below.   SO much worse on exposed skin and surfaces that get the most carpet contact- tops of feet, knees, forearms, etc. Now that I know what it probably is, its almost as if I can SEE the detergent residue accumulating on his skin during the day.
  • Sweating makes the eczema markedly worse. Or the eczema is
     worse in areas that remain moist, such as behind the knees.  Yes. Wet contact with detergent is more serious than dry contact, which is why existing residues become irritated and flare where children sweat.
  • He reacts to just about everything on the allergy skin tests, yet his blood tests show very few allergies. This the one I'm gonna have to say no.  Sam hardly reacted to anything on the skin test. Only dust and cats.  But he was on oral steroids at the time which I read online affect the skin test results, only my allergist insisted they didn't, which makes little sense to me since they kept him from breaking out all week. A few hours after the test though the entire test site was covered in eczema. We have not had a blood test so I can't compare.
  • His eczema does seem related to what you are using to wash him or the laundry with, but switching products has maybe improved it but never made it go away.  Yes. In the very beginning, when he was about 6 weeks old getting eczema all over I thought it must be detergent, but a switch to All Free & Clear or Dreft did not make the eczema go away, so we started chasing down food allergies.
  • He seems to get eczema from just about everything he touches and eats.
    Yes. :(  Poor baby. He is constantly breaking out at/around meal times.
  • His eczema improved after infancy, but you just can’t seem to make it go away. After the eczema started getting better, the asthma symptoms started up."  No. Sam's eczema has definitely gotten worse and worse over time. 

Saturday, May 12, 2012

Could it be... detergents?

Notice anything peculiar about Sam's rash in the above photos? I do. I am noticing that the areas of exposed skin are significantly more irritated than those areas covered by clothing, diaper, and hair. In fact, his diaper area and scalp after growing thick hair have been the least problematic areas of all. From my research, eczema is either ingestion or contact related... sometimes a bit of both, which I think is our case. But to me these photos suggest there is a lot of contact eczema going on.

I found this website: that outlines how one mother completely cured her son of eczema in 4 months by removing all detergents from their home and switching to PURE soap products. Not Dreft or All Free & Clear mind you, which is what pediatricians and dermatologists will tell you to use on your babies. Those are still detergents, just mild. But some kids can't handle ANY trace of detergent at all. Not even the mild or supposedly hypoallergenic stuff. Did you know that people used real soap for thousands of years before detergents were invented during WWII, and then they were only used for laundry. Detergent use has increased every decade since, especially since the 60's. Guess what else has steadily increased since the 60's? Eczema, asthma, and food allergies. Today there are very few homes that have any true soap cleaning products. Even those labeled "soap" now are often really detergents. There is detergent in household cleaners, make-up, toothpaste, shampoo, body products, moisturizers. It is even in products labeled "all natural" and "organic". It is in your hair and on your skin on on your dishes and in every particle of dust in your home. All those harsh chemicals and toxins flooding our bodies from infancy and being absorbed by that delicate, sensitive baby skin!

What about the increase in food allergies? Well this mother also points out that it makes perfect sense that a good percentage of food allergies (not all mind you) are really detergent allergies in disguise. Just think of the processing and detergent-washed machinery that goes into making so many of our foods. Yes, there is a lot of detergent in all of the processed food at the grocery store, dairy is a big one because of all the machinery it goes through, and even some fresh fruits and vegetables have more detergent in them than others because of how they are cleaned and processed before hitting the stores. What about oatmeal and pasta and rice that might have fewer detergents in the package, but then we get them home and cook them in pans that have detergent residue still on them from the dishwasher, and then we eat them in bowels and with utensils also washed with detergent?  She said this more than accounts for some situations where parents are at their wits end thinking their child is allergic to everything they eat because they are constantly breaking out at and around meal times, and not consistently to the same kinds of foods. I know this feeling well! I have often felt like Sam's eczema flare-ups are so random and I could not possibly trace it to one certain kind of food. It could be that its not about the food at all but how it is prepared and served. Detergents!?

I find this all so very fascinating. It gives me a tremendous amount of hope. I could be way off, I mean I'm definitely at that desperate stage where I'm willing to try anything, and almost everything is starting to sound feasible. But this also just makes SENSE. When I look at Sam's eczema 'lines' on his body, I start to see that where he has been wearing shorts and t-shirts lately, his lower arms and legs have been left exposed to rub up against things like carpet and furniture all day long which have much greater accumulations of harsh detergents from years of use (our carpet in our town home is over 7 years old- yuck! And our couches are probably much older, we are the third generation owners on those!) He still has eczema all over his body, but it is worse in the areas of exposed skin. On his clothing would be the All Free & Clear residues which are milder, thus a milder eczema on those areas.

As for switching from detergent to soap products, it is more complicated than simply switching one for the other. The mom who wrote points out that water alone will not remove stubborn detergents. In the beginning, she had to wash every load of laundry about 6 times - alternating soap and hot water rinses, to get out enough detergent so that it did not irritate her baby. She had to rinse the detergent residue out of the dryer before drying those same loads or all that work would be undone when they went in the dryer. She had to scrub the laundry basket. She had to scour the tub with soap and hot water. All towels and rags used for this product had to already be "superwashed" (that's the 6 cycles) with soap or the cleaning would be useless, detergent-laden rags or towels would just transfer the residue right back to the clean tub. Every person in the house had to use all soap, it could not be a switch just for baby. She had to wash every household surface of residue because ever little trace would irritate. The entire process took 4 months until her son stopped having breakouts and she could declare herself a detergent-free home.

(Not to mention that soap products are not found in regular stores any more. Dove is not even true soap, they changed their formulation in 2007 so it is no longer pure. There are a few true castille soap products at Trader Joes, other than that, most of them have to be special ordered online.)

Once her home was set up as a safe zone, her son's skin health, permeability and ability to naturally moisturize itself improved dramatically. After that, he would still break out when away from home because detergent residue is everywhere, but it would take greater and greater amounts to effect him as his skin health improved, AND, breakouts were much easier to get rid of. It wasn't long before the contact eczema would literally "wash away" in the bathtub, all it took was a bar of true soap to get that detergent residue out of the skin and it would be gone within an hour of bath time. That detergent-free home environment is what really made the difference and gave his skin enough time to heal and normalize between flare-ups caused from outside.

Some parents using her website who have tried this method have also reported huge improvements in asthma symptoms.

So this is the journey we are about to embark upon. I am excited and hope this will be a big part of our solution, if not THE solution. Wouldn't that be awesome? Sounds like a lot of work but not more work than it is to be up for hours at a time night after night trying to soothe a suffering child and live with a pain in my heart day to day. I still have Sam on a special diet that comes from the book "Healing Psoriasis" that promotes natural healing through ridding the body of toxins, and I think that may be helping as well. It's hard to tell but his chest and back seem to be clearer than before, if we can get rid of detergents also maybe that will be the key to clearing up the rest of his body.

Sunday, May 6, 2012

Crystal Clear

(Sam has a slight obsession with his sister's rain boots)

How beautiful is this boy!? I snapped this photo yesterday morning after coming off a 10 day course of oral steroids. Absolutely flawless skin with not a single blemish or hint of pink anywhere. It was great while it lasted. He slept so well all week! Now he is off the medicine entirely, and as expected last night we started seeing traces of red creeping back to the surface. Then today he woke up an absolute mess, fully erupted again and covered head to toe in itchy, blotchy rashed-over skin.

I feel like we've exhausted the allergy angle and route for now, and I'm losing faith in modern/western/traditional medicine (as far as this particular ailment is concerned). I am ready for a new approach and a couple of different conversations I've had within the past week are pointing me toward natural healing and homeopathy type therapies. My Aunt Susan gave me a book called Healing Psoriasis by Dr. Pagano that approaches skin disease from a holistic angle. I can't apply this exactly because Sam is so young but I hope to follow it loosely ... still need to actually finish reading the book to fully evaluate it but the first few chapters have me excited because they are suggesting some things I have suspected intuitively along... basically that this is not a SKIN issue at the core, but an outward manifestation of something amiss internally in Sam's little body. Also, I myself have some eczema/psoriasis (not sure which) on my right hand that is quite bothersome. It started on a small section of my little pinky about 4 years ago, then grew to cover the whole finger, and in the past couple of years has spread further to cover two other entire fingers and is starting to creep onto my palm. It is dry, blistery, and cracks, bleeds, and peels in cycles but is almost always present in some form. If it can spread that much in 4 years I feel nervous about it covering my entire hand in very little time so I am very interested in this healing method for myself also.

Friday, May 4, 2012

Skin Prick Test

I have been anticipating this day for the past 9 months or so. I guess I was expecting to go and discover the exact combination of foods/chemicals Sam is allergic to and we could just avoid them and that would be that. And yet today was very anti-climatic, and I don't feel any closer to figuring out Sam's skin issues.

I took Sam in this morning for his test. He got a total of 56 pricks: 22 on one arm, 12 on the other, then 16 on one thigh and 8 on the other. He hated it (of course). I had brought our portable DVD player and put on a Tom and Jerry cartoon while the nurse pricked him, hoping this would help to distract. Ha... no luck for me. Before the test she pricked me with an empty scraper thingy so I could see how it felt. It did not hurt at all. I think he just didn't like that we were making him hold his elbow straight.

There were various essences on the pricks. Some were inhalants, some foods, some molds, some trees and grasses and pollen. The nurse numbered and marked all of the test locations for reference, and we waited about 15 minutes. Out of ALL those things, he reacted to only 3: cat, dust mites (2 kinds) and peanuts. And she wasn't even supposed to test him for peanuts, because we'd already established that allergy.

As a side note, the foods we tested for were Milk, Soy, Corn, Wheat, Egg, Pea, and Peanut as part of the pediatric panel, and 5 additional at my request which were Strawberry, Potato, Almond, Tomato, and Oat. All of these were negative except for peanut.

So the take home from the doctor: I was told to give him antihistamines before we visit Grandma (she has cats) and to invest in an allergy encasement for his mattress and pillows, and his siblings mattresses (since they are in the same room) and wash all his sheets and blankets weekly in hot water. No stuffed animals. That was all for dust, and that is fine, he does cough and choke every night which is likely from the dust allergy and these measures will help.

But none of this really answers for his rashes. I asked if it was possible for certain foods to cause flare-ups or exacerbate eczema but not show up as reactive on a skin or blood allergy tests, and the allergist said yes, absolutely. Well that makes things confusing, wouldn't you think? I had suspected this was the case from all I have read online. There are certain foods which seem to make his eczema worse. Like milk. But the test showed no milk allergy. It is believed things like oranges, strawberries, tomatoes, and potatoes (nightshade veggies) can significantly worsen eczema, without showing up on an allergy test . So what it comes down to is that it is not possible to get a straight answer on what Sam's triggers are from allergy tests. Triggers and allergies are not the same thing. Also I am learning that the relationship between allergies and eczema is not straight-forward, and neither doctors nor anyone else really seems to have a good explanation or understanding of exactly how these two are related, only that they are.

I have always felt diet is an important factor in Sam's health. But there are other things to consider. It could be chemicals and detergents that set him off too. Some parents have had success removing all detergents from the home. And I don't mean just switching to Dreft or All Free & Clear. They have had to remove ALL traces of detergents from laundry to shampoo and conditioner and all cleaning products and use only pure soap products (which, true soap products are very expensive, and not easily available) before seeing true healing. But its not the answer for everyone.  There is no one answer that works across the board.

The rest of the doctor's diagnosis and recommendation was to keep things clear and at bay with medication until he outgrows it. Many children do, but there are some who suffer for life. He prescribed antihistamines - 1 teaspoon a day indefinitely, cortisone for flare-ups and thick-skinned areas, and I am to add a daily dose of Singulair powder to the cocktail if the previous two are not enough to keep him clear.

This is always the answer from western medicine: drugs and more drugs. I will use them to keep Sam comfortable as long as I do not have a better answer, but deep inside I feel like there must be a trigger of some kind that if I can just discover and eliminate, he would be cured.  In this instance I feel like drugs are doing Sam's body a major disservice by covering up the symptoms of a deeper issue and suppressing the immune system. It is a vicious cycle. 

So there it is. Lots of work left to do and most likely a long road ahead.