Wednesday, June 27, 2012

Biggest Improvements After 5 Weeks:

Well things are looking better this week. A couple of weeks ago I started a support/discussion group on facebook for those using or interested in using SolveEczema.Org as a guide and I am going to copy here what I posted over there a few moments ago (with some additions for the purpose of this blog) ....

"Biggest improvements after 5 weeks of implementing the SolveEczema.Org methods:


1 - No more dry skin! Sam's skin feels totally normal and healthy, I only apply aquaphor once a day. Such a difference from before when I did not dry him completely and then slathered on vanicream 4 to 5 times a day and his skin was still dry after all that! I used to literally get a cloud of white skin flakes whenever I changed his clothes, no more! Even the areas that still have the most redness feel soft and naturally moisturized and not the least bit dry.  I am interpreting this as his skin barrier being repaired and restored. This confirms the principle taught on the SE website that dryness and eczema are actually separate issues and not a direct cause and effect as the majority of the world preaches. It also confirms to me that most of what we do to 'cure' dry skin and eczema, namely applying more and more moisturizing products, only exacerbates both issues. In the case of dry skin, less is more. And, I think also of all the times I have been told never to use soap on Sam's skin because it is too drying, and in the end it has been switching to traditional, true soaps for washing him that has so quickly restored his skin's healthy feel and moisture.


2- Face, arms, and back are beautiful clear 95% of the time now, and quick to heal when they do have minor break outs which does not happen as frequently or easily as before. I attribute this to an improved skin barrier and greatly reduced antigen load.

3- No more splotchy redness or flaky skin around his eyes. He used to have that all the time. Now his eyes are clear and soft.

4- S-L-E-E-P ! Sam has been sleeping through the night for 4 weeks. That means I'm sleeping too!

5 -  I'm not seeing any new rashes or worsening areas on his belly or legs
He has some permanent rashes that have been there for about 5 months on belly and legs, which I still don't know for sure what it is but the ACV (apple cider vinegar)  baths seem to really be helping. The healing is slow slow slow and changes almost imperceptible, but it is a huge thing that these areas are not getting worse or showing new irritation.  The only places I see new rash now are his hands, neck, and cheeks (exposed skin only, go figure!) but they are minor and controllable and I can usually help them to clear up within 12 hour or so by washing with soap and applying an ointment barrier.


6- Sam's itchiness is minimal now and discomfort caused by his skin almost none. Again, a huge change from before when he was constantly itchy and scratching. The only time I ever see him scratch is when I remove his pants for a diaper change, he'll take the opportunity to scratch his legs! Or during naps if I have failed to mitten him he will usually scratch at his hands and wrists.  As for discomfort, the red skin that remains on his legs and belly bother me much more than it does him.

7- I can now predict and head off breakouts. Eczema is no longer "random" . For example today we went to the library and I clothed him in thin but long cotton clothing, then when we got home removed it all, washed him thoroughly with soap and put clean clothing, and no break outs from dust or detergent exposure. Also did this yesterday when he took off his shirt and was sliding down the stairs on his back. Washed him right away and was able to control the break out so it was very minimal and almost gone today.

If we can in fact sustain these improvements over a few months, I think it will be easier to accept that I will likely not see 100% elimination of Sam's eczema while we are living in our current home because of the old carpet. The change in quality of life for Sam and for me and our family has been night and day with these changes from the detergent removal. I hope others who have little ones suffering from eczema will be able to make some of these changes and see big or even little improvements over time! Even little improvements in eczema can make a big difference in quality of life and easing the stress level!"



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To anyone who might be new to this blog, I want to reiterate that all of these changes have come without any steroids creams, prescriptions, special producs or lotions. The changes we are making are exclusively to our home environment. To read more about what has led to these great improvements, please visit and review the information contained on the pages of www.solveeczema.org. I promise it will change the way you view and think about eczema! Every itchy, sleepless child needs this information.  Every day I am so grateful I came across this website. I wish I had been more open to trying it the first time I found it nearly a year ago! Oh well, better late than never. ... of course this information will not help every child with eczema but its author estimates that this particular cause is accountable for up to 60% of childhood eczema. From what I have read on forums, so many other parents describe their child's eczema as nearly identical to Sam's in presentation and behavior, so I could only assume that the are caused by the same environmental influences. 


I am just amazed that the medical community does not yet have or recognize or accept this huge piece of the eczema puzzle. I am also amazed that most of the guidelines I have taken from solveeczema.org that have worked (no small miracle after 18 months of trying literally every  recommendation out there) are exactly opposite of the things that Sam's pediatrician, allergist, and dermatologist advised us to do.  I can see now that many of the things that were doctor recommended were actually perpetuating the eczema.   I think the medical community probably does the best they know how but it seems many are regurgitating information that hasn't really helped anyone, because they just don't know any better or aren't willing to consider drug-free options.  

Thursday, June 21, 2012

Not much to report.

Not much has changed.  Adam could not find the Lotrimin product, but its just as well because when I looked up the ingredients online I wasn't sure they were all safe anyway.  For the many strengths and the wealth of info contained on the Solve Eczema website, I am still left very confused about the most important thing of all - how to know whether a product is safe or not for detergent-related eczema by reading the label. I feel utterly lost as to what makes something a mild detergent. I know there is more to it than SLS (sodium lauryl sulfate).

In my research I did come across a list of natural anti-fungals. One is raw un-diluted Apple Cider Vinegar with "the Mother"  (that is the term for the enzymatic healing part)  mixed in with bath water. This works just like the bleach, but sounded a lot safer to me! I picked up a jug of this stuff at Earth Fare for about $16 and we've done two days worth of ACV baths.  I also picked up a small dropper sized bottle of Oil of Oregano. It cost me $25. Yikes. For a tiny little bottle. It is also supposed to be a powerful anti-fungal when diluted heavily with olive oil and applied topically. I just applied in a very small spot on one knee yesterday and today. His knees seem to have the thickest and most irritated spots of red.

Sam still appears to look amazing in the morning. This morning I thought, wow, that ACV must have worked a miracle! But tonight at bedtime, same as always, he was very red again.  Even though this has been happening for months, it still shocks me how different his skin can look from morning to evening. I also can't seem to keep my emotions from riding daily on how his skin looks.  It seems my spirits soar when he seems to be clearing, and come crashing down again when I realize he's not.  I have kept Sam covered in long sleeves and pants in the house for the past 2 months at least, and washing with soap every night. If the red was just contact eczema, I should be seeing more of a difference.  A lot of what I am doing is to treating for possible yeast infection, but it could even be something totally different like hypopigmentation which is a documented side effect of the particular steroid cream we used. I read that sometimes this unnatural pigment due to prolonged steroid use can last months or even years when the steroid is discontinued.  I have no way of knowing what this redness is due to really. Since none of the doctors I've been to will even attempt to find out, I guess I'm on my own to figure it out.  The only thing to do really is continue the anti-fungal treatments and continue the detergent-removal and constant dust removal and hope that something will give.

That probably sounds like a repeat of previous posts, but that's where we are.

Saturday, June 16, 2012

And yet...

There is still that underlying red patchy look to Sam's skin, that makes me think we might need to treat for possible yeast infection. It looks so much like the yeast infections my other kids would sometimes get on their bums as diaper rash.   The dilute bleach seems to have helped the infection ever so slightly, but this rash is so persistent. It keeps fooling me too, because in the morning it is so faded that I keep thinking his skin is more healed than it really is. I think I read that morning to early afternoon is when natural cortisol levels spike, causing the skin to appear more natural. I could be way off. But his skin always looks awesome in the morning, I get so excited. Then by evening/night its back to looking redder again and I see those stubborn red spots more clearly. Still better than before, but not the progress I want to see. I'm having Adam get some Lotrimin for yeast infection tonight, will try on a small spot first for awhile to see what happens. SolveEczema clearly points out that if eczema skin is infected, it will not respond to soap washing until the infection has been treated and eliminated. So maybe this is what is impeding more rapid progress.

Something is working

Well I am not seeing the immediate results of soap bathing - as in, clear skin minutes later- but I am seeing definite results and that is the important thing. I wrote in my post yesterday how Sam came home from Grandma's with a red rashy face and arms. I washed him off in the bath with Dr. B's Baby Mild Castille bar soap and puzzled over not having it 'wash away' before my eyes, but when Sam woke up this morning his face is 90% clearer and arms and hands 75%.  So it is working! Perhaps his skin just so weak and sensitive that it takes longer to see the healing. I never would have seen clearing like that with his regular eczema,  normally those rashes existed in the same place for weeks or until we slathered them in hydrocortisone cream.

Friday, June 15, 2012

Two steps forward, two steps back.

It has become quite obvious now that Sam's eczema is of the detergent-related variety.  I keep reading and re-reading the solution to this kind of eczema on the Solve Eczema website but I am still a little confused about how to manage it in our particular situation. This is something I know I will just need to figure out with time. Due to our circumstances of being in a rental that will not allow removal of the carpet, and being in GA in the humid summer where washing the carpet ourselves might induce mold, I feel like there is only so much I can do.  I don't know if we'll get all the way to clear skin for Sam  while living where we are, but if I can just manage the rash to where it is not out of control, that is still much better than where we've been.  The rashes that do still exist don't bother him nearly as much as they used to. We are all getting sleep!

Certain areas of Sam's skin have regressed a bit in the past two days.  Grandma lives across the street and often watches the kids for me, a couple of hours here and there so I can get things done, or else she just invited them over for the company.  Sam spent just an hour there Wednesday evening, and a few hours today, and he is quite broken out now.  The breakout screams detergent because it is only on his face, arms and hands, which were the only parts exposed at Grandma's house. (Even though I keep him in long sleeves inside, he still pushes them up.)  His legs, which I have kept covered in footed pants, continue to heal.  But his lower arms and hands are pretty bad compared to how he looked before going to Grandma's.  Both times after coming home I stuck him in the bath right away and washed him well with soap and then dried with a layer of Aquaphor, straight in to clean cotton clothing.  His face looks a *little better from the washing but his arms and hands are still red and rashy.  I am not sure why we are not getting that washed-away result from bath time.  It certainly has worked for my own eczema, but doesn't seem to work that way with Sam.

I don't want to have to keep Sam home all the time, my other two children would go crazy, but maybe I do need to commit to keeping him home for at least a couple of weeks to give his skin a chance to fully heal, or at least to discover how much it is capable of healing in our home environment.  It's tough because I think the only way we survive is by getting out and doing things! It is pretty hard to keep a 6 year old, 4 year old, and 2 year old happy in a tiny two-room apartment all day in the summer.  We already do not play outside much just because the sunshine exacerbates Sam's eczema,  and now it seems all of the indoor places are also problematic and consistently interrupting healing. *Sigh*.

Another thing I have found to be a huge challenge personally is keeping on top of 5 people who are coming and going at various times, picking up detergent and dust residues and bringing them home. I'm still not sure if everyone has to change and bathe whenever they come home before lounging about. If they don't is it just undoing everything I have done?  The solution makes so much sense in concept and on paper but I am finding it difficult to implement practically. I know it must be doable because I've read the letters and testimonies of parents who have done it and been successful. One mother saw her son's skin heal after EIGHT years of severe eczema by implementing the SolveEczema.org methods.  It's a learning process I know, and I am constantly having to step back and remind myself of the scope of this process and the ongoing work involved, and to be patient.  The reassuring thing is that it IS doable, and it IS a real solution that does not involve any creams, oils, drugs, wet-wrapping, or other crazy quick-fix band-aids that are a pain in themselves. This solution addresses the cause and I'm convinced that when its done right and all the way it knocks out eczema. Just knowing that possibility is out there is exciting.

Wednesday, June 13, 2012

Sammy's Skin June 13th - We are smiling!

For those who are not interested in reading through the previous monstrous post, of which these photos are the climax, I am posting them again here so you can see why my faith and hope are soaring today!  Sam's skin looks great! It is not fully healed by any means, but the redness is fading significantly for the first time since March and I am seeing a normal, healthy skin color peeking through! His chest is clear, arms about 70% improvement from last week and legs 50% improvement.  He has been off steroids for 15 days and the only medications I am using is Hydroxyzine which helps calm the itch at night. Even still, the hydroxyzine did not even touch his itchiness and discomfort two weeks ago.  This is incredible progress and we will take it!  This is coming after a lot of hard work, to read more about that see the previous post.





Progression of Sam's Eczema Over Time

I wanted to make a visual record of Sam's eczema and how it has progressed over time. I could not explain the progression then but I feel I can explain it better now in light of AJ Lumsdaine's detergent theory.

 October 2010 :  baby eczema around 4 months. The problem started initially at bout two weeks old as pretty bad cradle cap which "crawled" down  to settle on his face (mostly cheeks) and neck. It presented  as a scant, spotty rash of individual rough pink patches. 




   The next stage of progression or "worsening" came at about 5 months when Sam started crawling. It was winter so he was still wearing pants but just the tops of his feet exposed and dragging on the carpet and also he was spending more time closer to our carpet in general. So not only did the tops of his feet develop large bright red patches but also all other areas such as face, arms and hands that had previous only been exposed to less serious detergent sources like bed sheets, now worsened also when exposed more frequently and for longer periods of time to harsher detergents in our carpet.  Sam was 5 months old when we filled our first prescription for topical steroid creams.  Until the time he became mobile on the carpet his eczema had been quite manageable.

When springtime came and Sam traded pants for shorts, he was now crawling with bare shins and knees, and I next noticed large bright red patches just under his knees, then on his knees, with smaller spots of lighter irritation in between. As summer came and the months got even warmer, I let him go without clothing all together. In just a diaper, now crawling, walking, rolling, and rubbing his body all over our carpet and furniture, the eczema worsened still with growing number of eczema patches all over, covering him from head to toe.   Here are some photos to show what this worsening and spreading detergent-related eczema looked like:








Clear on steroids in October 2011: 





Off Steroids in November 2011:






First dose oral steroids Prednisolone (as opposed to topical cream) in Nov 2011:
When Sam was just over a year his eczema worsened markedly, and he was starting to break out randomly at mealtimes. We thought he was allergic to everything. We started working with an allergist and I started putting Sam and myself on strict elimination diets to try and uncover hidden diet triggers. During this time the allergist put him on several doses of oral steroids. I remember feeling so hopeful when his skin seemed to heal but now I understand how that was just an immuno-suppressing effect, masking the damage. Steroids can never heal chronic eczema. In fact, knowing what I know now, I believe the detergents in steroid creams (most contain them!) play a huge role in worsening eczema. Literally we were taking the very thing causing Sam's eczema (although we didn't know it at the time) and slathering it into his skin. 


Off Steroids in March 2012:  This is the stage when I first became alarmed because of the growing number of red patches, closer together. From this point on we saw less and less healthy skin and more red each time coming off medication. I didn't know what to think of it at the time but now I think it was probably a growing bacteria or yeast on the skin. (Read my post about how the overuse of topical steroid creams can lead to nasty widespread infections like this one, as I believe was the case in Sam's situation after having used TS for over 16 months.) 





April 2012:  Below is Sam's eczema at its worst, completely inflamed and infected. I didn't let him run around naked much anymore at this time (except for photos like this one)  so he would normally be wearing short sleeves and shorts and you can see how his eczema follows the clothing lines almost exactly, with total inflammation beginning exactly where the clothing ends. My theory for why his exposed skin looked so much worse in his second year than exposed skin in his first is that continual accumulation of detergents just made the skin barrier more and more broken down over time so that where he may have had intermittent weakened areas before, the whole surface of skin was now more easily susceptible to break outs and irritation from even the slightest exposure.  I think the topical steroid creams we use (most of which contain detergents themselves!) further increased barrier permeability, increasing both detergent absorption and skin irritation tenfold.

(As an aside, I am familiar with ITSAN.org and while I agree that steroids can seriously worsen a child's baseline eczema, I disagree with their interpretation and understanding of this problem.  I especially disagree with the suggested approach to healing  I will address this at a later time.)





Early May 2012: This rash is not budging! I thought it was so odd that his earlier eczema, back in the fall, had shifting and changing spots, but now all the irritations seemed to be  "stuck" and worsening. Again, I had no idea at the time that Sam's eczema was infected. In fact multiple pediatricians and dermatologists assured me this was a normal eczema presentation.




Mid-May 2012:  This is what a viral infection on top of previously-existing infection on top of eczema looks like! All 3 kids got Hand, Foot & Mouth and this is what happened to Sam's eczema during that week. Not fun!






 June 2 2012, after last oral dose of Prednisolone:  Sam came off this last dose with fully red arms and legs.  I was very unsettled by this as around this time I shifted from focusing on his diet to focusing on our environment, and was discouraged to see things seemingly getting worse instead of better:





June 13, 2012:  Wow!  This mommy is smiling today!  This is seriously the best Sam's skin has ever looked in the past 8 months while completely steroid free.  After finally being tipped off that Sam likely had an infection, I was able to start addressing that issue with a combination of bleach baths and ACV baths (apple cider vinegar is a natural anti-fungal) At the same time, following the council of solveeczema.org we removed all detergent products from our home, switched over to only pure soap products for washing, and kept Sam's skin covered at all times to protect it from environmental detergent residues beyond our control.  




He is not fully healed by any means but I am so encouraged to see that stubborn angry redness fading a little more noticeably each day. I think he looks at least 60% better than he did last week or even two days ago.  His face and arms in regular daylight look almost normal. The timing of this correlates exactly with the last week of dilute bleach baths which I am guessing have helped with infection on the skin, presumably allowing his skin to finally respond to our environmental changes. This remains to be proven but it is my guess. 

This hypothesis would make chronological sense because our first big dust/detergent removal following the steps outlined on SolveEczema.org was about a week and a half ago, and within 3 days I was seeing similar healing. Then bam, two days later, all inflamed again. BUT, in those  two days we had been away from home, visiting Grandma and then the hospital which would have huge amounts of detergent residues from the cleaning and sanitizing chemicals.  I wasn't positive the rash was due to those outings, or that the previous healing was due to our clean-up, so to be sure I kept Sam home from church on Sunday and we've stayed close to home the past couple of days. Sure enough the previous healing repeated itself after 4 days of being at home in our newly cleansed environment of greatly reduced dust and detergent levels.   Today he looks great.

If this healing continues long enough to prove the correlation, my work is obviously not done. We will need to maintain the safe environment, which I am told is so much easier once the soap switch is fully complete. Then it is just a matter of continuing to use the right products and dealing with breakouts that occur from exposures, which I've also heard is much easier once the skin is healed and often a matter of "washing" the eczema away in the bath with a true soap. I know that sounds crazy and I was hesitant to believe it but AJ has not steered me wrong yet so until she does I will trust her experience with contact eczema. To me it is more productive to follow an optimistic voice even if remains to be proven 100%, as opposed to the countless other voices that preach "No Cure. No Answer. No Solution." 

Will update in a few days and let you all know if he is still looking good. Hopefully he will be even better!

Sunday, June 10, 2012

Sam's Visit to Georgia Health Sciences University

On Thursday I got a call from the nurse at our new pediatrician's office saying they were able to request a special favor and had an appointment for us the very next day with a prominent dermatologist at the Georgia Health Sciences University in Augusta.  We figured this was our best chance at talking to a specialist without having to wait until September, so Adam kindly set aside all of the surprise plans he had for my 30th birthday, and instead of spending the day celebrating we left at 8 am and drove two hours to the health center.

Honestly, the visit was what I would have expected from any dermatologist here in town. Dr. Davis was not able to shed any light on why Sam's skin might be so red, she just said that she saw dozens of atopic kids in there every week that look just like Sam.  I stressed that I did not want to use any more steroids, and she honored that and did not prescribe any. She did prescribe Elidel, a "steroid sparing cream" but  it does not have much research behind it and is blackboxed for kids under 2, and has plenty of negative reviews already around the web for having side-effects very similar to steroids.  I will not be filling that prescription.

I was a little aggravated that this derm did not seem to want to give straight answers to my questions. At one point I guess I became impatient enough that Adam became uneasy and left the room. Well, I must have asked a particular question 8 times and she kept changing the subject, I was a little frustrated.  I was making the point that Sam's eczema started out with scattered red patches with lots of healthy skin in between, and that over time the patches had become more numerous and closer together, until the past couple of months his entire arms and legs were of total red pigment with no healthy skin in between. I told her how I was worried we had been over-prescribed the steroid creams and oral steroids, and expressed concern that perhaps they were the reason for the worsening rash and redness.  She said something like "Oh, I would never prescribe oral steroids, only as a last resort"   or "I would never prescribe Triamcinolone"  which is what we had used. So I pressed "And why wouldn't you? There must be a reason you wouldn't prescribe it. What side effects would you be worried about?" And that's when she kept changing the subject, never directly answering my question no matter how many ways I rephrased it.

She kept saying the redness was just the normal eczema.  Finally at the end, after Adam left, I got her to say that one of the side effects of topical steroid overuse and misuse would be adrenal suppression, a symptom of which can be red skin.  I told her I was worried about that and asked if we could have Sam tested for adrenal suppression. She said there is no point, if he is suffering from that I would know because he would be in great pain and misery, and he obviously was not, smiling and acting just fine in the room there with us.  I told her he'd only been off steroids completely less than a week and asked if it might take time for symptoms to show, she said she didn't think it was an issue.

When I asked about doing a skin culture to see what kind of bacteria or yeast might be colonizing the skin, she again said there was no point in doing that because the skin was not broken, and swabbing unbroken skin would turn up all kinds of bacteria that were just sitting on top and it would be anyone's guess as to which was causing infection. She also said that she wouldn't want to prescribe an antibiotic, but that if Sam does have an infection he might benefit from using an antibacterial soap like Cetaphil and also doing the dilute bleach baths.

At one point I told the doc of some of the efforts we were making at home to see improvement, I said something to the effect of "If we could just figure out the allergy or cause of Sam's eczema, I feel like we could eliminate it and..." she didn't even let me finish before laughing out loud! She said, there is no cause, that I would drive myself crazy pursuing that end and I needed to focus on making Sam as comfortable as I can until he grows out of it. I told her that was not so and that many moms had been successful finding a cause and eliminating their child's eczema. She said "Yes, that's only on the internet" ... whatever that means.

So, not the greatest visit but I'm glad we went because if we hadn't I would just be wondering if she could have helped in some significant way. Now I know, and I'm pretty convinced after all of my research and all the medical professionals I've talked to that they all feel pretty much the same way. I don't think we will find one who will tell us any different than this: Eczema and allergies are to be drugged and suppressed.

This is the regimen we were given:

1-  Bleach baths: once a week, 1/4 C bleach + half tub water
2- Cetaphil Antibacterial Soap daily
3 - Wet Wraps- as many nights a week as possible for moisture.  (this is wearing a pair of wet pjs under dry pjs)
4- Hydroxyzine (antihistamine) every 6 hours while flaring to help with itching.
5 - Doxepin 30 mins before bedtime to aid sleep.

I have already done 4 of the bleach baths since last week, which seems like a ton but next week will only be 3 and then twice a week, then once.  I hope we see improvement! So far, no difference in redness but I have noticed a huge difference in itchiness.  I can't say for sure its because of the bleach but this past week Sam has slept through the night every single night. Actually, that might also be thanks to his magic pajamas with the 'silver soothe' in them that is supposed to calm itching! I just remembered that. Gosh we love those pajamas and I wish they had a store in the USA!  Come to think of it, he has slept soundly every night he has had them on, except for one night when he wet through his diaper in the middle of the night. I had to remove the special mitted pjs because they were soaked, and put him in normal cotton top and pants, and the rest of that night he was whiny and itchy.  In fact I woke up 3 times to find him completely naked because he had pulled everything off his lower half to scratch.

I am still focusing a lot on the dust in our house. I am vacuuming like crazy, and keeping our linens and bedclothes washed in hot water at least weekly. I will probably wash Sam's sheets every few days.

I am not sure what more to do with detergents and soaps. Only because of the carpet, it is such a big obstacle in both dust reduction and switching to soaps.  Because if he is allergic to just dust or both dust and detergent, either way it is bound to have a huge stubborn amount of both that is constantly being picked up and spread to other areas of the house. We had our downstairs carpet replaced a few weeks ago, and Adam said that when they lifted the old carpet up there was at least 20 gallons of dust underneath. Ick. Our landlord was kind enough to replace our downstairs carpet but said he will not do the upstairs while we are living here. He did offer to have it cleaned for us, but I've already talked to the carpet cleaner he uses and they would only use harsh detergents, so I don't want to do that.  We cannot remove the upstairs carpet because there is no usable, livable flooring underneath. Just very raw wood with lots of tacks and staples.   I feel like placing any other carpet or floor covering on top of our old carpet would just trap the dust mites in a moist environment and cause more problems.

One day we will have an allergen-free home with all wood floors and leather furniture!! I dream of this!! And by that time, Sam really will have outgrown all his allergies. ;)

Thursday, June 7, 2012

Sammy's skin June 4th - RED.

These pictures were taken on Monday. Sam's skin was very red and swollen.  It was worse on Tuesday, but starting to look better today (I think?  I still don't always trust my perception of what's happening with his skin because I know sometimes I see only what I want to see).   The third picture shows his skin next to mine, for comparison. He's a little lobster! This is off all medication.







There have been several suggestions made as to why his skin is red, and why the redness has been unchanging for some time. So here are some possibilities:

1) He has a yeast or fungal infection on top of his eczema, and the infection must be treated for the eczema to go away.

2) He recently had hand, foot, and mouth virus with a nasty rash, and this rash is still left over from the virus due to high levels of biological detergents circulating in the bloodstream (who knew there was such a thing?? Thanks A.J.)

3)  The red pigment of his skin is due to blood vessel dilation or HPA axis suppression, both potential complications of topical steroid overuse or misuse. 


So, I suppose time will tell which we are dealing with. Some who read this will already know that I have been on an emotional roller coaster ride even considering that we are dealing with #3 after having been contacted by a few kind-hearted and very well-meaning people who are already suffering from Red Skin Syndrome or Topical Steroid Addiction Withdrawal.  While some doctors dispute the existence of such withdrawals, the official FDA label on Triamcinolone and Hydorcortisone creams clearly allows for this:   

Infrequently, signs and symptoms of steroid withdrawal may occur, requiring supplemental systemic corticosteroids. Children may absorb proportionally larger amounts of topical corticosteroids and thus be more susceptible to systemic toxicity (See PRECAUTIONS-Pediatric Use). If irritation develops, topical corticosteroids should be discontinued and appropriate therapy instituted.

The reason for my concern over Sam having such a complication due to steroid use is because of the suffering that many of these people are going through in order to fully withdraw and heal from topical or oral steroids. I visited the blog of one little boy four months into being completely off topicals and it still haunts me! Not only has Sam been on the topicals for 16 months but his allergist also prescribed 3 ten-day courses of oral steroids in the past 8 months, which are a more serious problem and only to be prescribed as a last resort.  

I will be honest, yesterday I was sold on Red Skin Syndrome, but today I feel less emotional and am equally considering that we may be dealing with an infection or viral effect.  No sense losing my head  until I know for sure, right?

To address the possible infection, I am planning to do a week of dilute bleach baths. I know it sounds a bit crazy. I would never have tried them before, but I have done so much this past week toward cleaning up and de-toxing our home environment, and I feel like if this is an infection holding us back from seeing the potential effects of reducing dust and detergent, I need to address this. I did take Sam to a doctor two days ago who came  highly recommended, and he was open to all of my concerns, but admitted Sam's case was beyond his expertise and wanted to send us to Egleston Children's Hospital for a skin culture. Only problem is the soonest available appointment is in September and I can't wait that long. We are on a cancellation list, but in the meantime, I don't think the bleach baths will hurt ( I've had several moms recommend these to me) and I don't intend to use them long term. 

This past weekend was a whirlwind of cleaning, scrubbing, vacuuming, and dust removal. I had my mom take the kids overnight and spent a total of 21 hours tackling our dust! I sucked up at least two vacuum bags worth of dust out of our carpet, walls, doors, baseboards, and our air!! Oh my goodness. There must have been 5 inches of dust coating every side of the air intake box in our house, and all the vents were blocked by significant amounts of dust, not to mention our ceiling and floor fans. All so dusty! I cringe to think of the air Sam was breathing in, after testing very allergic to dusts on his skin test.  All of our mattresses and pillows are covered, and I also packed away dozens upon dozens of dust traps that were in the open such as stuffed animals, blankets, coats, sweaters, and draperies. All vacuum sealed in space saver bags.  

That's a huge dust mite reduction! I am still vacuuming every day, obviously not to the same extent but on maintenance level, and trying to spend a good 10 minutes in each room on the carpet especially. I had read that it can take up to a week after reducing the dust in a home to see improvements in the skin of a dust allergy sufferer. So I'm still holding out for that improvement! I could have sworn Sam's skin was looking just a little better today! It was for sure less red. Glimmer of hope?

We are also full-swing on soaps and I am loving the Cal Ben's products. They just feel good on my skin. I hope they help Sam too. 

Oh and on top of all that Sam is also on Dr. Pagano's diet for Healing Psoriasis which some eczema sufferers have had success with - probably because it eliminates almost every possible thing anyone could be reacting to.  Let's see, the rules are no dairy, no eggs, no citrus fruits, no strawberries, tomatoes, nightshades (potatoes, peppers, parika, onions), hot spices, refined flour or sugar, junk food, fried or greasy food, processed food, beef or processed meats. Phew! And for Sam specifically we have added no nuts and no wheat.   I know it sounds like he doesn't eat but actually I think he eats quite well. Lots of rice, beans, avacado, fish, chicken, goat yogurt, fruits and green smoothies. 

This eczema stuff is serious business folks! 

That's the update for now. 


Friday, June 1, 2012

Spiffy New PJ's

I amazed that I posted about these awesome pajamas from Europe on Saturday, and less than 5 days later I already had two pairs show up on my doorstep!  Sam is one lucky boy to have some amazing people in his life who care so much! THANK YOU!! You are an angel and we love  you!! (you know who you are).  I am so impressed with the softness and quality of these pjs, I put them in the freezer for about 10 minutes while Sam was bathing so they would be cool on his skin before bed. (I had washed and dried them earlier in the day).  I thought Sam might be upset initially about having his hands  completely enclosed but he seemed to think the mittens were neat and was showing them off to his older siblings.  Sleeping peacefully now.  It comforts me so much to know that if he does wake up itchy tonight (likely, since he was so red after bath time) that he won't be able to damage his skin.