Posts filed under ‘eczema’

first appointment with the rheumatologist

I am pleased with how the visit went at the doctor’s office (pediatric allergy, immunology clinic at UK). We were there for over 4 hours and I was physically and emotionally exhausted by the time we got home.

Jackson was so cooperative with everyone except the last doctor we saw. He let the nurses examine him and then a female doctor who works with the rheumatologist came and got a detailed history and Jackson cooperated with her and let her examine him from head to toe. Then that doctor came back in when the rheumatologist came in.

I don’t know if Jackson just didn’t like the doctor or if he was ready to go home but he was done letting people inspect him=) By the end of our visit, Jackson was crouched underneath my chair, facing the wall, with his pants pulled up, scratching his legs to death. Kind of cute in a way, but also very sad and pathetic. Poor little guy!

The doctor looked at him and went to get his camera and came back with 4 more people (students, other docs in the practice; I’m not sure) I guess he thought Jackson was an anomaly or he just wanted to document everything and use him as a teaching moment=) I also think he was getting pictures for insurance purposes.

The doctor would like to do skin treatment in the hospital for 3 days. Yes, for those of you who don’t see him regularly, my little guy looks terrible and he scratches himself more often than not. Wanting to admit him validates my concerns and I know that yes, he is really bad and that it isn’t just a little bit of eczema or rash! This outpatient treatment is something that needs to be pre-approved by insurance.

In the meantime, I am doing a process called wet-wrapping him at home. With only 2 treatments on his left arm and leg, Todd noticed a huge difference from his right side. I talked with the nurse and told her what a drastic improvement has been made and asked about doing it on his whole body at home and perhaps delaying the hospital admission until our next appointment to see if we can get his skin healed up at home and maybe avoid the hospital treatment altogether. The nurse agreed and thought that was a good course of action.

The doctor said he has severe atopic dermatitis or severe atopic eczema. This is not a new diagnosis. Every doctor he has ever seen has called it this. The doctor is leaning towards him having hyperimmunoglobin E syndrome (HIES or hyper IGE)  He also mentioned a few other auto immune disorders and has ordered several blood workups. We will not know for sure what’s going on until the results come back and maybe then, we still won’t know. You can read more at the link if you’re interested, but again this is just a guess and he may not have it.

This is the first doc who said he probably won’t outgrow the eczema. Everyone else has said, hopefully he will; most people do. But this doc said that because it started in the first month of life and because his rashes/redness are head to toe—and not just in patches, those are indicators that this is not going to go away.

I was dreading going to the lab for the blood draw. But Jackson did fabulous. He didn’t want to sit on my lap and was making a fuss but I pulled him up there and then he had quite the conversation with the lady. (with his 30 word vocabulary) He said ouch, but then he sat absolutely still and was fascinated by what the tech was doing to him. I’m glad because I was getting weak just thinking about the 7 vials of blood she was collecting.

Advertisements

November 14, 2009 at 5:08 pm 3 comments

wet wrapping saved my son’s skin; it’s a miracle

My son has had severe eczema since birth. Lately, it has gotten worse. His skin is red from head to toe, he is flaky all over, and he has cuts all over just from scratching himself so much. He is itchy more often than not.  He is raw and bleeding in places. His skin is thick all over and he’s swollen and inflamed. We’ve tried everthing that the allergist has suggested and although we have made some break throughs here and there, it has gotten really bad recently with almost constant itching.

This week, we had an appointment with a rheumatologist for the first time. One look at him and he left the room, and came back with his camera and four med students or other doctors from the clinic and he took many photos of Jackson’s skin.

The doctor wanted to admit him to the hospital for 3 days to do a process called wet-wrapping. Yes, his skin was that bad.

Because this would require a pre-authorization with insurance, the doctor explained how to do it at home. Well, let me tell you, we’ve had drastic results and I don’t think a hospitalization will be necessary.

We’re using an rX low dose steroid cream that’s called triamcinolone acetonide cream USP .1%. (yes, that’s point 1 percent not just 1 percent) It’s a big tub and it cost less than aquaphor=) In contrast, the copay for elidel I’ve gotten a couple times was more than $40 and I’ve read that it can cause cancer so I don’t want to use the elidel ever again, plus it didn’t really work very well.

Anyhow, I’ve used this particular cream as prescribed by the allergist  and didn’t get any results at all so the key here is how we’re using it with the wet wrapping. I’m so thankful for this doctor! You can probably do this with whatever ointment or cream you currently have on hand.  In other words, I think it’s the wet wrapping that is doing the trick, not the specific steroid cream we’re using.

Here’s what we’ve been doing:

  1. Soak for 20 minutes in plain warm water. No oils or soaps necessary.
  2. Pat dry, leaving a little moisture on the skin.
  3. Rub the cream on the skin.
  4. Cover with a warm wet cotton layer that is close fitting to the skin.
  5. Cover the wet layer with a dry layer, also close fitting.
  6. Leave on for 3 hours.
  7. Do this twice a day.

These layers need to be close fitting to the skin. If it’s loose, it would be extremely uncomfortable. I am using Mary’s  socks on his arms and Alex’s socks on his legs and it’s working out really good size wise; I just cut the toes off the socks.

If you need to do the torso, you can use cotton pajamas or long johns that are a size too small for the wet layer because once wet, they would stretch out and not be close fitting. You don’t want to have any wrinkles that would irritate the skin.

We noticed a drastic difference after only 2 treatment but now after 4 days, his skin practically looks normal all over except where the worst spots had been–wrists, ankles, in the crevice of the arm, behind the knees and behind the ears.

Four days ago, his skin was angry red with cuts all over and bleeding and bumpy rashes. Now his skin is white and only the worst spots remain. His skin really does look “normal” now.

Plus, he is sleeping through the night. I think I can count on my two hands how many times he has slept through the night.  Usually, he woke up twice a night with extremely dry, flaky skin and scratched himself like crazy and crawled into bed with me for comfort.  I haven’t had a little boy next to me in 2 nights.

We’re supposed to do this wet wrapping twice a day for 2 weeks. Then not as often, but I do think the wet wrapping will be a long term therapy for him.

November 14, 2009 at 4:58 pm 7 comments

tears for soy and corn

Several months ago when my son just wasn’t getting any better, when his hives kept appearing every night and he continued to wake up itchy and irritable, I went on a quest to figure out what was causing his allergic reactions.   First, I tore apart his room, thinking or hoping I might find a huge colony of dust mites or something that was affecting him at night. That would have been a simple solution.  No such luck.

I have previously written about my son’s allergies and our first trip to the allergist and about day 3 of reading food labels.

I had eliminated all known foods from his diet and someone suggested that  I needed to find out the unknown. What was lurking in my son’s food and supplements?  I examined everything that my son put in his mouth. It turns out his multi-vitamin contained corn; so did the papaya supplement that I occasionally gave him.

I was giving him 3 different antihistamines as recommended by his allergy doctor. Two OTC and one rX.  Let’s just say that my local pharmacist and manufacturer of the store brand were very helpful indeed. (as opposed to the Zyrtec people who were vague and refused to give me any real ingredient info and kept their stance as the finished product has never been tested for soy.  grrr) It turns out that sodium acetate is derived from soy.  Go figure.  Voila’.  I had been unwittingly giving him a product that was not labeled as containing soy, a product as “prescribed” by his allergy doctor who very well knows that my son is allergic to soy. I cried and cried. I was angry. I guess that’s why it’s taken me this long to write about it.    I wasn’t angry at anyone in particular (like the allergist or the manufacturer), just angry at the whole situation. And overwhelmed.

Thanks to the Food Allergen Labeling and Consumer Protection Act of 2004 , there are 8 common allergens that must be clearly labeled on food and drug products.  This makes my grocery shopping a little simpler than if this act hadn’t been passed. However, I sure wish corn was on the big 8 list!

Out of all my son’s allergies which include wheat, dairy, soy, corn, eggs, tomatoes, berries, just to name a few….corn is the hardest to avoid because it is not one of the top allergens required by law to be clearly labeled on the product. This Corn Allergy website has been very helpful to me.  Did you know that simple table salt contains corn because corn is involved in the iodization process?

In addition to corn, soy is also very hard to avoid because soy fulfills so many different roles in American manufactured food (binder, propellant, filler, etc.)    I have compiled a list of common foods below containing soy.  Which of the following product does not contain soy?

  1. Cheerios
  2. Hellman’s real mayonnaise
  3. Nabisco Honey Maid Graham crackers
  4. Meijer Applause snack crackers (like Ritz)
  5. Olive oil cooking spray (aerosol can)
  6. Marzetti organic Parmesan ranch dressing
  7. Starkist solid white albacore tuna in water
  8. Chex Party mix seasoning packet
  9. Vitamin E
  10. Celestial seasoning raspberry tea
  11. Grey Poupon spicy brown mustard
  12. Oscar Mayer hot dogs
  13. Ceterizine (over the counter antihistamine)
  14. Oat Dream oat drink
  15. Hershey’s semi sweet chocolate chips
  16. Worcestershire sauce

The answer appears at the end of this article.

Below is a picture of what trace amounts of soy or corn can do to my son. When I say trace amounts, I mean the amount of soy or corn is so minuscule that most people don’t react to it so manufacturers don’t feel the need to label their products as containing the ingredient.   He used to look like this every single day before I finally figured out that it was his antihistamine that was doing this to him.  This photo was taken as the hives were fading.  (in other words, they were often much much worse than this picture conveys.   Here the hives are red marks on his skin, rather than being upraised and angry red.)

hives

The last time my son broke out in his hives was about a month ago. His older brother had left a piece of taffy-like candy out and Jackson ate a bite (just one small bite) before his brother grabbed it away from him.  A couple hours later, his whole body turned red like he had a sunburn then his lower body was covered in  hives. All this from one little bite of candy containing corn syrup.

Now the answer to the little quiz above. It was a trick question. All of the mentioned products (as of this writing) contain soy. I included the name of  the brands because similar products in other brands do not contain soy. Most notably, bumblee tuna in water does not contain soy because it truly is in water, unlike the aforementioned brand of tuna that is in actuality packed in broth. This fact is clearly labeled in small print on the back of the product, yet it is still called, tuna in water. Very annoying, indeed.

Now when I am at the store and discover a new product that is potentially safe for Jackson that I haven’t purchased before, I call the manufacturer and ask them before buying it. I was looking at a loaf of rice and millet bread at Whole Foods. I called them and they said no corn or soy. Then I asked what the source of the methyl-cellulose was (anything ending in “ose” is usually derived from corn.)  The answer was cottonwood. Hmm. really? Cottonwood?  So I bought the bread and Jackson devoured it!

Another time I bought some turkey bacon someone recommended to me. I read the label and it seemed safe. After eating it and thoroughly enjoying it, my allergy boy broke out in hives so I e-mailed the company. Their response was, “Thank you for your inquiry. The lactic acid starter culture in this product is derived from corn. There is no soy present.” Who would  know that lactic acid is corn…it says it is non-dairy, but it doesn’t say that it’s corn. Why can’t they let everyone know that it came from corn?

What has been your experience with food allergy and reading labels?

If you liked this, you might like my other posts about dealing with my son’s allergies and eczema:  Top 5 products that have helped our severe eczema and adventures in homemade cleaners.

August 26, 2009 at 12:18 am 18 comments

top 5 products that have helped our severe eczema

My two year old son has had severe eczema since birth.  As I  continually find more and more things that cause his rashes and hives, I have also found things that help his skin the most.

  1. sheabutterNatural Shea butter from Vermont Soap Works. This comes in a 64 oz tub for only $35 which is much cheaper than buying 4 oz at a time at your local store for $20.  This shea butter is so creamy and there are never any crystallized lumps (like the brands I’ve gotten at the store.)  If you’ve never used shea butter, it’s very thick and you just scoop a little bit onto your finger then rub into your hands to melt it and then smooth it on your skin. It soaks into the skin and provides relief to anyone with dry, thirsty skin. This is pure shea butter with only a little rosemary added as a preservative.  Also available in a 2 oz tin for $9.99. Those with nut allergies may not be able to use this product.
  2. Pure soap from Cal Ben Soap Company. I’ve tried several different soaps including castille soap (all without sodium laureth sulfate, etc) and this is the one that seems to work the best–leaves the skin feeling clean and moisturized as opposed to feeling parched and itchy.  Cal Ben has several other  non-detergent products that we use and loqh100ccobtrve including their five star shampoo.
  3. Queen Helene 100% Cocoa butter in a stick.  This is available in most drug stores for less than $2 a stick.  Don’t confuse this product with brands that contain additional ingredients. I’ve never seen another 100% cocoa butter, but please tell me if you know of another one. This is a solid stick that is loose in the tube.  To use, just hold it in your hands until it starts to soften, then start rubbing the stick directly into the skin. I can’t tell you how many evenings, my son’s skin has been dry and hurting and as I rub this into his skin, he just relaxes and lets me do it because it really gives him relief.
  4. mabelwhite1Mabel’s Miracle liquid castille soap.  I’ve only been using this for 3 weeks but I’ve loved it since day one.  I’m using it for laundry soap as well as in the mop water for my wood floors throughout the house.  I have the unscented pearl (I chose this one simply because it is buy one, get one free.)  Even though it is unscented, it smells heavenly! I am sensitive to many chemical odors (natural scents too,) but its mild scent doesn’t cause us any type of reaction.   For laundry, I am using only 1 Tablespoon (much less than the recommendation) per large load plus 2 Tablespoons of a borax/ washing soda mixture that I keep in a jar. (equal parts of each so it would be 1 T of each if done separately.)  I started with the recommended 1/4 cup and then just cut back until I reached 1 T and it’s still effective at cleaning clothes.
  5. This last thing is not a product to use, but rather products to avoid.  I first read about detergents causing eczema at solve eczema.  We don’t use any lotions, “normal” soaps that contain SLS, or body washes  because of the drying, stinging ingredients they contain (even natural, herbal, supposed to be for eczema lotions.)  We don’t use any products with detergents in them. More about that in this post.

What products have you found most helpful in treating eczema?

April 7, 2009 at 4:05 pm 12 comments

adventures in homemade cleaners

A few weeks ago, I told you that I was making my own laundry soap and dishwasher soap because of my son’s possible allergy to detergents.

homemade laundry soap

I found several recipes on-line for making liquid laundry soap. They pretty much all involved a grated bar of soap, or a fraction of a bar melted in a pot with some water and boiled for a few minutes. Sometimes borax and/or washing soda were thrown in for extra cleaning power. Seriously, it seems like anything goes and the measurements depend on water quality and how concentrated you want to make your concoction. A 5 gallon bucket was usually involved plus lots and lots of water to fill the aforementioned 5 gallon bucket.

Well, I don’t have a 5 gallon bucket or maybe I do and I don’t know about it. I would have to ask Todd if he has one in the garage that he can spare. But I do have an extra 2 gallon soup pot. So I used that instead and added enough water to fill my pot (this would be 3 gallons less than most recipes I had been reading.)

I wondered if I had done something wrong.  Nothing like the thick  stuff you buy in big plastic jugs at the store.  My “detergent”  looked like cloudy water. Not thick at all. I put it under the sink to let it cure overnight as instructed, not holding out much hope that my concoction would thicken.

Boy oh boy, was I wrong. I was both pleasantly surprised and worried at the same time. I was surprised that my liquid had thickened to the consistency of softened butter. And I was worried that now I had a product that was too thick to use as is. I thought I’d have to put it back on the stove and divide it out and start adding more water and find more containers.

Nope.  That wasn’t necessary!  I keep my pot of laundry soap on top of my dryer with a 1/4 cup measuring spoon and just put one scoop into each wash load. First,  I put  a little bit of hot water in the bottom of the machine to help melt the soap before changing the water temperature and adding the clothes.  I’m not sure if this is necessary, but I’m doing it and everything is working well.  Stains are coming out and my clothes smell like nothing.  I love that. They’re clean and there is no odor. No dirt, gunk, or grime and no perfumes either.

I love my new very economical homemade laundry soap that was a lot easier to make than I thought it was going to be.

homemade dishwasher soap

I found a few places on-line for homemade dishwasher soap. All it is 1 tablespoon of borax and 1 tablespoon of washing soda. Easy enough. The first week was OK. I was pleased.  My dishes were clean and there were no more spots than usual on my glasses. Then I started seeing spots. Not water spots, but little bitty spots of soap. I was having to wash my glasses by hand after they came out of the dishwasher.  Then there were more spots with each passing day until the spots all melted together into a film. Then it wasn’t just on my glasses. It was all over my plastic cereal bowls and I could feel it on some of my other dishes too.

HELP.

I tried vinegar. I tried running an extra rinse. I used an old box of fruit gel to clean out my dishwasher (I read that citric acid was good for this.)  But still I was seeing spots and film. YUCK.  So I used up the rest of my Electrasol.  I’d be happy to hear what works for this. Am I using too much of my stuff? It is possible that the first week when I didn’t have the spots, I was using less than I was when I started getting the spots (I stopped measuring.)  But then I started measuring again and still got the dry powdery feeling film on my glasses.

What’s a girl to do?

homemade dish soap

I had laundry soap and dishwasher soap (at the time, this was still working for me and I was happy with it.) Now I needed something to replace my dawn dish detergent. Something to cut grease on pots and pans and something to wash my hands with several times a day, also to cut grease since I’m always coating Jackson with Vaseline, cocoa butter, Shea butter or aquaphor.

I only found one recipe for liquid hand soap. It’s just hard to make something to cut the grease, I guess.  My advice: stick to bar soap. That doesn’t solve the cleaning of pots and pans problem but it’s great for hands.

I found this recipe at tipnut.com for liquid hand soap. All I can say is that I tried it and is she nuts???? Did this tip nut person even make it herself before posting it on her blog for everyone to see? And how about the picture there–definitely the product pictured is not the recipe here.

This recipe says to use the blender. Duh. All I can say is I should’ve known better. Don’t believe everything that I read.  So I followed the ingredients and started whirring.  STOP, turn the machine off. The ingredients which really only filled the first couple of inches in my blender immediately foamed and bubbled and went straight to the top of the container and would have overflowed had  I not turned the blender off.

So what kind of soap did the tip nut use?  Or maybe she didn’t actually use soap and only used water and honey.

I poured most of the soap out and whirred again. And again, it immediately shot straight to the top. Then I added some vinegar (not in her recipe) but I wanted to make something that would cut grease.  The blender started making a different kind of noise and the pattern of whirring liquid changed. Very cool chemical reaction.

So I filled my empty dawn bottle up and also a soap dispenser.  This stuff does not do anything to cut grease. So its not the kind of product I’m looking for. It will do for basic hand and dish washing until its gone.

Back to the blender. I rinsed and rinsed and rinsed that baby. Lots of scrubbing. It had soap in it, why wouldn’t it come clean?   I put it in the dishwasher.  Big mistake. The soap got all over my dishes.  So I had to run another cycle to get the soap scum off my dishes.  My blender eventually came clean after a few doses of dawn.

Don’t try this at home!!!

January 21, 2009 at 10:31 pm 8 comments

my newest discovery: eczema caused by detergent

A big thanks to Eczema our family’s solution for this information.

My 2 year old has had eczema since birth. Bad eczema. The first time I took him to the allergy doctor a few months ago, the doctor said it was bad, not the worst he’s seen, but a very bad case. His skin is like leather, soaking up everything we’ve smeared on it, and we’ve tried many products. But it’s not just rough and lizardy looking, there are breakouts too, caused by certain foods.

The allergist told us to rub canola oil (we also used coconut oil and evening primrose oil) into his skin about 10 times a day. We did that, religiously. But the oil  just soaked right into his skin. We didn’t even have to really worry about him getting oil onto the furniture or the floor because the oil literally just disappeared into the skin. I also used cocoa butter–the kind that comes in the stick that you can get at the drugstore. This is only a fraction of the cost of shea butter which also worked really well. The cocoa butter stays on the surface of the skin and provides relief

The pediatrician told us to use cetaphil instead of baby soap on him and to switch laundry detergents–to try the free and clear ones and to try something like dreft.

Didn’t work. After baths, any breakouts on his skin would be even more inflamed than they were before the bath–as with any bath product that we tried.

Then I came across the solveeczema website a few days ago and it suggests a simple test to see if detergents could be the cause of eczema. I washed the patch of skin on Jackson’s back that is his worst spot (meaning it is always rashy). I used soap, real soap.  I bought some Dr. Bronner’s liquid castille soap. Then patted it dry with paper towels (not our family towels because those would be contaminated with laundry detergent) and then I coated it with aquaphor (a product containing vaseline and a few other things.) I also did this on one arm.  Well, about an hour later when I checked his back, his skin was smooth and the rash was almost gone.  My husband looked at it and said, “Wow.”

So then I did this same process on him head to toe before his nap.  When he got up, his skin was like I have NEVER seen it before. It was like normal skin. No more reptile skin. He still had some breakouts here and there, but overall  his skin was smooth and supple.

I didn’t cry but I got choked up inside and started shaking like I had the “butterflies.” Have you ever had that feeling?  This is a HUGE breakthrough in solving our son’s terrible itchy eczema problem.  A big answer to prayer.

That night he slept through until 7 in the morning. He never does that. He usually wakes up at least once in the night scratching himself…The next morning I let him run around in his diaper but then he found some clothes and got himself dressed. Within a half hour, his torso was all broken out, presumably from the laundry detergent in his shirt. We had gone bounce free a couple weeks before, so hopefully the fabric softener residues were already gone.  The detergent was at least one of the things that caused his eczema.

I spent Christmas Eve washing his clothes in some grated castille soap. Fortunately because he’s only 2, all of his clothing fit into one washload. I added a sheet and a towel too. I just kept washing it and washing it, in hopes of removing all the detergent. First I did several vinegar rinses and then I did a few soap washes, then just kept running loads of plain water.

Sodium lauryl sulfate. Sodium laureth sulfate. These are just two of the common detergents in virtually every single washing product in our house and at the grocery store.   I’m thinking it will take 3-6 months to completely eliminate detergents and all traces of detergent from our home.

Going detergent free won’t be easy. This isn’t a green issue, an eco-friendly or a hypoallergenic issue. This isn’t going with mild detergents or soaps. This is going NO detergent at all and switching to soap which with the exception of Ivory bar soap can’t be found in stores. I ordered  soap powder so I can make my own laundry detergent. Until it comes, I’ve been grating Ivory soap and combining it with Arm and Hammer washing soda and Borax. This has been working well. (what works in my water may not work in your water) The recipe I used is for every part of soap, add half as much soda and Borax.  Here is a webpage with 10 homemade laundry soaps or detergents. Not all of these are detergent free.

Products we use that contain detergents that we’ll have to find alternatives for:

  • toothpaste
  • liquid hand soap
  • dishwasher detergent
  • dish soap for handwashing dishes
  • laundry detergent
  • shampoo
  • body wash
  • the cleaner in my hoover steam vac

I ordered the sample pack from Cal Ben Soap company which contains shampoo, bar soap, laundry soap, and dish soap.  I can’t wait for it to appear on my doorstep so we can start using it.

I made quick and easy homemade soap for the dishwasher by using 1 Tablespoon each of borax and washing soda.  I’ve done 5 loads and so far it works just as well as my former detergents. The dishes are clean and shiny and there are no spots on the silverware or glasses.   And I don’t pre-wash my dishesl; I  just scrape the food off. This is much cheaper than regular dish soap so that’s a bonus.  After doing a few loads with that combination, I mixed some up in a salad dressing cruet so I won’t have to measure and it will be easy to pour into the dishwasher.

EDITED to add:  this does not work for our dishwasher. First spots came, then a film that seemed to get worse with each load. I’m currently using biokleen automatic dish powder which is working well.  There are minor water spots on the glasses, but no film.  I bought the biokleen at Kroger for $9.99 and it does 64 loads. I also have ordered Cal Ben’s dishwasher destain.

Again, let me say that I am so very thankful for the hard work that the family at solve eczema has done in sharing the information they discovered about the link between detergents and eczema. This isn’t just about switching laundry or bath products to a different brand. It’s about eliminating ALL detergents. Its about making a distinction between soap and detergent and choosing and using only soap products to eliminate eczema.

This all has to do with skin membrane permeability which I’ll write about in another blog post.

What has been your experience with eczema, allergies or detergents?

December 31, 2008 at 5:45 pm 57 comments


welcome

Welcome to my personal blog about my life as a wife and homeschooling mother of a few energetic children! You'll find my favorite recipes, all kinds of reviews, the occasional rant, and whatever else I feel like writing about.

My other blogs are
birthing with guinever
grieving with guinever
I hope you can relax and stay awhile.

what to read?

Ten homeschooling moms compiled these book lists:
1000 GOOD books
100 GREAT books

Archives

site meter

Homeschooling's
#1 Way to Save
You can join the homeschool buyer's co-op for free! They offer lots of group discounts for home educators.