Monday, October 26, 2009

A Break Through?

My son uttered the words I've been praying to hear one day. He said, "My itchies are getting better!" I was so happy, we did a little dance together, and then we had to call daddy to share the good news! I hope & pray that we're on our way to healing the eczema. He has been looking clearer the last couple of days, and that's even with dining out at 2 restaurants over the weekend. Restaurants are so challenging for us and we always pay the price. My son has also put together a couple of decent nights worth of sleep, although he still wakes up periodically it's an improvement. The only things we have changed recently were upping the Ketoconazole from 50 mgs to 100 mgs and adding the D-hist jr, and peroxide baths.

Friday, October 23, 2009

Continuing the Yeast Treatment

We had our 2nd visit with the Holistic Ped/MD. My son has been on a yeast anti-fungal treatment for 3 1/2 weeks; he takes Ketoconazole. The doc was surprised that he hadn't progressed further, as my son is still scratching & itching, but wants to continue to treat for yeast for one more month before making a decision to change our course of action. The good news is that his skin is starting to smooth out and lose the inflamed redness. The bad news is that the itch is still there, 24 hours a day. Another mom had told me that it took her son 8 weeks to get to the end result, and the itch was the last to go. Reason being is that the body is fighting off all the poisons the yeast die-off produce and it just takes that long to get it out of the body.

He was prescribed a new steroid cream (I need to find the name of it), it's gentler on the overall system than the betamethosone which is like topical prednisone. He was also prescribed Naltrexone, which is popular in treating alcoholics & drug users, but in lose doses has been used successfully in treating multiple auto-immune disorders. It's suppose to create more endorphins in the body and reset the natural opioid receptors. Here's a informational link: http://www.lowdosenaltrexone.org/#How_does_LDN_work

We were also given a chewable herbal supplement called Springboard D-Hist Jr, which the doc said one kid responded to it so positively that this proved to be the eczema cure that kid's body needed. It's made up of Quercetin, Stinging Nettles Leaf, & Bromeline. It's suppose to be great for allergy relief. There's an adult version called A&I by New Beginnings.

Pictures of Eczema Rash

Here's a couple pictures of my son during a bad eczema flare, set off by the alkaline water. There's times when he's covered head-to-toe and then there are times I can get him to clear--mostly with the control of the foods he eats, but sometimes there seems to be no rhyme or reason.



Wednesday, October 14, 2009

Holistic MD/Pediatrican

A couple weeks after the run in with the allergist, we were able to get in with the Holistic MD/Pediatrician who accepts our insurance. If this works out, what a blessing it would be since each visit to the ND (naturopath) was costing me anywhere from $100-200 a couple times a month.

This doctor specializes in autism and food allergies. From what I've learned, autistics tend to have lots of gut issues. Anyways, this meeting went really well, he spent 1 1/2 hours with us. The best part (besides this doc taking the time to listen to me!) was that there were oodles of toys in the exam room so I could talk without interruption. Within a few minutes of gathering my son's history the doctor said "This kid has a yeast problem." I was floored because I had asked the two previous docs if yeast could be the source of these issues, and both blew it off (the allergist & holistic #2.) I was told we could test for yeast via a stool sample, but in the end we opted to treat him for the condition without the sample. In my heart-of-hearts I truly think yeast is the problem.

I was told to wait a week before starting an anti-fungal treatment, that we needed this time to build my son's gut up with probiotics. Probiotics are the good guys, and yeast are the bad guys. In addition natural antiinflamatories were prescribed--2000 I.U.s of Vitamin D drops, Fish Oil with Borage Oil, and a supplement with Quercetin. After a week he was to start 100 mg of Ketoconazole. If the problem is yeast, he'd more than likely experience some die-off symptoms.

Holistic Doc #2 & The Allergist

After the terrible experience with the alkaline water, I needed yet another set of eyes on this situation. I sought out a well-known holistic doctor that I had heard about for at least 10 years. Over the years I've known 5 people who are patients of his. The first thing this guy says when he sees my son is "What the hell happened to him? Oh, alkaline water. I'm the alkaline water guy's worst nightmare. Everyone tries to push these kids alkaline, when their bodies need to be more acidic." He ordered my son off all juice and fruits, especially citrus, recommended Nutiva coconut oil for his skin and to cook with (it has lots of good omega essential fatty acids), said he should eat pickles, and prescribed two supplements (Cal Amo & Cataplex F by Standard Process.) I kid you not, by the next day my son's skin was improving. Maybe it was just timing, but it was quite the coincidence.

That same week a friend of mine recommended yet another doctor. A holistic MD/pediatrician that accepted our insurance. I thought what the heck, it's worth a try. After the thousands of dollars I've spent out of pocket on the holistic ND (naturopaths), I'm game.

In the mean time I had an appointment with our allergist. We had received the RAST blood test report back, but needed to go in and discuss the findings. This doctor really irritates me, because although he's very nice and spends a lot of time with us he just isn't open minded. It's like he thinks things are the way they are because that's how they are, there is no cause and no looking for the root of any issue. He prescribes a band-aid to fix a gaping wound, weather it's another steroid cream or breathing treatment. He just doesn't have the answers I want and need. My main goal of this visit was to get a prescription for an epi-pen. So mind you my kid was looking a million times better by this time, but the doc was so taken back by my son's appearance that he wanted to hospitalize him and wet wrap him. The worst part was this doc's attitude as if I wasn't doing enough as a mother. He has no idea the hell we've gone through. He actually had the nerve to say "I know you think this is a food allergy issue." Which I replied, "No, I don't think it's a food allergy issue. I think it's deep seated in the gut. I'm not sure if it's yeast or what. What do you think it is?" He said he thinks "he's just a kid with really bad eczema." This totally pissed me off! Something is causing this eczema. Every morsel of food this kid eats has him breaking out in eczema. He can not simplify it like that. So I got the epi-pen script and left. The doc wanted to see him within a couple of days. That was 6 weeks ago, we're not going back if I have anything to do with it.

Our Alkaline Water Experience

Broccoli is my son's most favorite food on the planet. Seriously, he'd pick a head of broccoli over a brownie. I mentioned previously that after eating broccoli his eczema really flared and I could not get his skin back under control. It was at this point that Holistic Doc #1 recommended that we introduce alkaline water to our son. Boy, was this an experience that won't be forgotten.

Water ioners are what change the ph of water, and they originated out of Japan in the 1970s. We were told that there are studies in Japanese hospitals dating back 10 years that show kids are completely healed and recovered from their eczema and food allergies after drinking this higher ph water for 3-5 months, but during that time things could get worse before they got better. I googled the all knowing internet machine to find any information I could on alkaline water. Basically there are 2 distinct groups out there--the group that claims this water is nothing but snake oil and in no way, shape, or form can affect the body; and group two who swear it's the greatest thing on earth, that it's shrunk their tumors, made their skin look better, and caused weight loss. There's also a really poor quality video on the Japanese eczema study, but it wasn't convincing enough to me to put all my faith in. Bottom line I thought we had nothing to lose. Boy was I wrong!

This turned out to be one of the worse experiences of my life. Within 2 days my son's skin was flaking and peeling, and the eczema took on a whole new level and deep red appearance. He looked like a burn victim. The skin on his face cracked and split opened, and in the cracks it was oozing a yellow fluid. The very top portion of his skin was flaking off in huge bits. The eczema completely took over every joint on his body, and his skin turned to extremely rough, elephant-like skin. All we could do is apply oil and rub to comfort him. We had to wrap him in bandages day and night to keep him from scratching, it was August and he was sleeping in long sleeves and pant pajamas, and his sheets needed to be washed daily as they were covered in flaking skin & blood from the scratching. From the onset of this course of treatment one of us had to sleep with our son to make sure he wasn't tearing his skin off, and he would be up for hours during the night just scratching or with us rubbing him.

My husband and I were so taken back by this outcome that we tried the water for a few days to see what would happen. Both of our forearms broke out in pimple like rashes, I counted twenty blemishes on my arms. Also, one of my finger tips (only one) became raw and inflamed with little painful sores. My finger stayed this way for 2 1/2 months, the only thing that finally cleared it up was soaking it in apple cider vinegar for a few days. Ironically this is the same finger tip that is numb from an old injury where I had cut my hand, I wonder if something was going on with the nerve endings? When I told the Holistic Doc what was going on with us, her response is "You're toxic!" Really, come on. I've never had a skin problem in my life, there has to be a better answer than that.

This was an extremely traumatic experience. It took 2 1/2 months for my son's skin to recover from this ordeal and for him to start sleeping through the night again. It was horrible. But since this, things have gotten even more interesting.

Wednesday, October 7, 2009

Antihistamines We've Tried

It can be a bit unsettling with the amount, frequency, and ease that my child takes medication. I say ease because he just takes the little measuring cup and throws it back without a problem, as long as it tastes half way decent. We've tried a few different antihistamines:

1) Zyrtec--We've been prescribed 2 teaspoons a day to help with the allergies. I don't notice any difference while he's on it, so it's hard to tell if it's working or not. If he does start to get a nasal drip, I make sure he takes it to help prevent the drip from settling into his lungs.
2) Xyzal--It's suppose to the be the same as Zyrtec, but is only available in a prescription. There was a 3-week stretch where I thought it really helped with the eczema, and then it seemed like we plateaued.
3) Benedryl--The good old stand by, but of course it makes him sleepy.
4) Atarax/Hydroxyzine--The doc says this is like a stronger benedryl. I give a teaspoon before nap and bedtime and it really helps him relax and not scratch as much. I don't like drugging him, but there are times when his skin needs a break from all the scratching, A friend of mine has been on this medication for 25 years (due to the itching resulting from celiac disease) and she says it's helped her to become less itchy with less medication.

Tuesday, October 6, 2009

Creams and Topicals that We've Tried

I've probably mentioned more than once that we've tried everything under the sun to combat eczema. There are many days when my son is covered from head to toe in rough, thick, elephant-like skin. I'll admit that sometimes we don't give a cream a fair shot, but at times it can be hard to tell the difference between a 3 year-old being overly dramatic and something that might really sting. Here's the list of creams, ointments, and oils we've tried:

1) Nutiva Organic Extra Virgin Coconut Oil. This is our current favorite, it melts on the skin and then is absorbed pretty well. It's also full of Omega 3s & 6s.
2) USF Ointment from Standard Process. This stuff is thick and really coats, and since it's an ointment and not a cream it spreads well. We use this on extra rough spots.
3) Emu Oil. This one seemed to work for us for a short while. There was a rough 2 weeks where we blew through about $100 in this stuff, it's not cheap, but it's suppose to be good for healing and also has a natural SPF.
4) Jason's Vitamin E Oil. We used this for a good 5 month.
5) Eucerin Cream--we've tried the really thick stuff from the tub and the regular cream from the tube. It coats, but after a while my son's skin started turning really red when we used it.
6) Aquaphor--this is what we started with, but it became clear that it irritated his skin.
7) CeraVe--This is my current favorite. We used it for a while early on, but have come back to it and we see good results.
8) Vanicream--Also very hopeful based on others' reviews, but his face would break out in hives.
9) TriCeram--I really liked this one initially, but seemed like we hit a plateau and needed to continue with our search.
10) Native Remedies--We didn't give this one a good chance. It was $25, but the peppermint either tingled or stung my son and he refused to let us use it on him.
11) Vasoline--Same as the aquaphor.
12) Weleda Calendula Baby Cream--We tried for about a week, but didn't notice any difference.
13) Aveeno Anti-Itch Cream--Didn't seem to have any effect at all, nor did regular Aveeno cream.
14) Sesame Seed Oil--Didn't seem to have any effect at all.
15) Wheat Germ Oil--Didn't seem to have any effect at all, and has a strong odor.
16) Shea Butter--We used a whole tub of this, and after a while it seemed more irritating to his skin.
17) Desonide Steroid--This is a milder steroid which we used on his face, it had no impact on his body.
18) Betamethasone Steroid--This is a stronger steroid that we used on his body. It does work, but when we have to take a break from it his skin flare bright pink.
19) Triple Cream--This stuff is thick & creamy, not impossible to rub in like the thick Eucerin Cream. It has promise, but I think it also has some corn products. I know my son has a corn allergy, just not sure if it's topical or only internal.
20) California Baby
21) Elidel--Non steroidal prescription cream. I use this very sparingly when I need to give DS's skin a break from the desonide. This cream also has a black label/cancer warning from the FDA, although the 2 allergists we've seen disagree with the label.
22)  Protopic--Another non steroidal prescription cream with a black box warning.  I think the main difference between this and Elidel is that Protopic is an ointment where Elidel is a cream.  Protopic has worked great for eyelid eczema and other very problematic spots.
23) Atopiclair--Non steroidal prescription cream. This is shea butter/oil based. After about a month of using this cream, I really like it. I can visually watch the reddness reduce once applied, but DS says it stings. The studies on this cream are encouraging, something like a 78% success rate and the itch vanishes over time.
24)  Epiceram--This is an Rx that's worked well for my son, we use it primarily as a face cream and the CeraVe on his body.
For 1 1/2 years we bathed our child every single day per doctor's orders. The idea is that applying the creams after a bath will lock in moisture. Results were hit and miss--I think it mostly depended on what he ate and the food allergies. We also would wet wrap or put him in wet pajamas, which did work but is pretty miserable for him. We've also seen doctors that advise to bath only 1-3 times per week, with the idea that bathing removes natural skin oils and that kids need to be exposed to some germs.

You can also try adding the following to the bath water:
1) Baking soda
2) Epsom salts--Magnesium will absorb into the skin, it has an anti-histamine effect.
3) Apple Cider Vinegar
4) White Vinegar
5) Oatmeal bath soak
6) Vasoline (tub will be slippery!)
7) Olive Oil (tub will be slippery!)
8) Hydrogen Peroxide--Our bodies naturally make peroxide as part of an immune response. Our Ped recommends adding some to the bath to combat eczema, and also for colds & flu.
9) Bleach baths--Ask a doctor before attempting. Many eczema patients will develop staph infections, and this helps kill the bacteria. Only use 1-2 ounces in the filled bath tub (not infant tub, and before putting the kid in the bath.) Limit to 1-2 times per week and rinse the kid off well after the bath as this can be drying.

We went through a phase where our son's skin would turn bright red once any kind of water hit it. We started to think he was allergic to chlorine, and installed a shower water filter. His skin has improved at bath time since using the filter. Obviously this doesn't make any sense if you're adding bleach to the bath water. But controlling eczema requires a lot of trial & error.

Changes We've Tried Around the House

The thing with eczema is that it can be completely trial and error. We've made changes to just about everything in our house. Some products we've made the switch to include:

1) Switching to plant based powdered laundry & dish washer detergent. We now use the Trader Joe brand, as they're all natural.
2) Using eucalyptus drops in the laundry to kill off dust mites.
3) Not using fabric softner.
4) Using Frebreeze Allergen to also combat dust mites.
5) Using homemade spray cleaner made of 1 part alcohol, 1 part white vinegar, & 1 part water. Lemon oil drops can be added for fragrance.
6) All natural toothpaste for our son--Tom's children's flouride free.
7) All natural bath soap. We've tried a few varieties including Emu Oil, Evening Primrose, and Honey & Oatmeal.
8) Trader Joe Shampoo, and Weleda Shampoo.

I haven't noticed any dramatic changes since introducing the above, but it can't hurt. Until we figure this out we'll continue to suspect anything and everything.

Monday, October 5, 2009

Monthly Asthma Attacks & Holistic Doc #1

Absolutely every video shot of my child has him coughing to some degree. It's been obvious that this kid has some respiratory distress. For the 6 months between the ages of 2 to 2 1/2 my son was rushed monthly to the doctor's or the emergency room with an uncontrollable asthma attack that didn't respond to albuterol treatments. Each visit was the same thing--pulseox readings, breathing treatments, and prednisone prescriptions. After 6 straight months of this I was ready to jump off a cliff, and with winter approaching I was really worried. I decided we needed additional help than what the allergist, pulmologist, dermatologist, and pediatrician were able to provide. And so I sought the help of a holistic naturopathic doctor.

This was our first encounter with a holistic practitioner, and I was skeptical but desperate. She practiced applied kinesiology, which incorporates a system of manual muscle testing and therapy. AK is based on the theory that an organ dysfunction is accompanied by a specific muscle weakness. Like I said, I was skeptical but willing to give anything a shot. I can tell you that a year later when we had the RAST blood testing done, she was right on with the foods he was allergic to.

The muscle testing allows for a very tailored and personalized regiment. He was prescribed various homeopathic medications and nutritional support supplements. Within the first few weeks the skin inflammation greatly reduced. There were times when we could get his skin to clear, but the food allergies were definitely still present. The asthma flares settled down, no more rushing to the ER, although we did continue with the daily pulmicort breathing treatments. It was the first winter when every little cough didn't settle in my son's chest. Come spring my son was looking very good and the asthma wasn't always on my mind. We decided to try to re-introduce his favorite food--broccoli.

Well, the broccoli brought the eczema back in full force. I was told that broccoli breaks down into sulphur in the liver which creates a detox process. I had thought he was allergic to it, but the RAST test claimed he wasn't (and I've learned that RASTs are not that reliable.)  After battling eczema triggered by the broccoli for 8 weeks we were introduced to the idea of alkaline water.

Sunday, October 4, 2009

Our eczema journey begins . . .

At 5 months old my son developed red, irritated patches on his cheeks. Seeing how the fall weather had set it, I thought it was due to the change of season and the dryness of the air from using the heater. His skin progressively worsened, to the point if I held him while wearing a dark colored shirt I wold be noticeably covered in flakes of skin. We saw a dermatologist, and the cycle of topical steroids began. We were told to get rid of all Johnson's & Johnson's product and replace them with Aveeno or Dove, to use Neutragena T-gel shampoo, to bath our son everyday in warm water but to only wash his hands, feet, & private areas with soap, and then within 3 minutes of bathing to apply steroid creams followed by Eucerin cream or Aquaphor. We followed this advice religiously, and yet we were never able to completely clear the eczema.

At 11 months, our son was hospitalized with breathing problems. This turned out to be our first brush with asthma, although not formally diagnosed for sometime later. From here on out, we began daily breathing treatments of Pulmicort via the nebulizer under the advice of a pulmologist.

Not too long after that, food allergies appeared with the introduction of a single blueberry. After eating it he immediately vomited and had an asthma attack. As exposure to new foods increased, so did the food allergies. His skin would break out in hive-like splotches, and would turn thick, scaly, and crusty. At 18 months the skin prick test only showed an egg allergy, but it became apparent that this kids was allergic to a whole lot more than blueberries and eggs. The allergist advised that "if you think he's allergic to something, then avoid it." Much easier said than done! I thought he was allergic to milk, soy, wheat, tomatoes, broccoli, cranberries, yogurt, cottage cheese, raisins, peas, chick peas, and a slew of other foods were suspect. I played this game until I finally couldn't take it any longer and demanded a RAST test be done so we could have a firm understanding of what exactly we were dealing with. By this time my son was 3 years-old. And he did test allergic to everything I mentioned plus, apples, carrots, green beans, bananas black pepper, all tree nuts, peanuts were off the charts, and honey. Basically, this kid became allergic to everything he ate.

As a side-note, my son also had a terrible allergic reaction to his 3rd DTaP vaccine. On top of the immediate vomiting and eczema from head to toe, he also reacted with an asthma attack and had a lump the size of a small apple at the injection site. These reactions lated for 12 days, and under the doctor's advice that was the last vaccine administered to him.

Throughout this process I learned that eczema, food allergies, and asthma commonly go together. I also learned that there is not a cure for any of this autoimmune responses. It's been a lot of trial and error, and a complete learning process along the way.

Why blog about eczema?

In hopes that others can benefit from all the effort, heartache, and money I've spent fighting this battle for my son. This blog is dedicated to all my efforts to forever rid my son of his terrible eczema itch. I've learned so much over the last three years, have tried countless potions & lotions (ok, maybe not countless--at last count I have purchased over 85 products), and am bound and determined to bring some normalcy to my son's life.