Posts Tagged ‘eliminate’

My Baby Has Eczema: New House, New Doctor, New Plan

Friday, January 28th, 2011

Last week I shared about how my life spiraled out of control as I watched my baby get worse and worse, with no end in sight. My emotions were out of control, and I didn’t know what to do about it.

New Home

I had been resisting going to a regular doctor (MD) out of fear. My husband worked for Child Protective Services, and he told me that a doctor had turned a mother in to CPS for not following the treatment he had outlined for her child. I didn’t want to have a doctor prescribe steroids for my son and then turn me in to CPS if I didn’t use them! But I was getting to the point that I couldn’t handle things the way they were. My son was miserable nearly all the time. If I put him down to practice crawling, he would put his face down on the carpet and rub back and forth. I knew I had to do something. Besides, the naturopath he had been going to had pretty much exhausted her knowledge of the subject.

My husband and I realized that we needed to have him home more. He worked an hour away, and the 2-hour round-trip commute was killing him, especially on top of all the stress we were dealing with. So he started looking for a place to rent near his work, and I decided it was time to start using the hydrocortisone more than just a tiny bit on the worst areas, as I had been.

New Doctor

I also decided it was time to find another doctor. I didn’t know where to start, but I knew of a place where I could ask for recommendations. So I logged into Mamapedia.com and asked the moms in my area for a recommendation. I specified that I wanted a doctor that would look favorably on alternative options and that would not be bothered by the fact that I had chosen to delay vaccinations.

I only received one reply, but it was a recommendation for a doctor that was only 3 or 4 miles away from my husband’s work–and even closer to the house we were going to rent! Integrative Pediatrics with Dr. Paul Thomas was her suggestion, and I eagerly checked out the website. When I read that “it is the goal of Integrative Pediatrics to bring the best of complementary, alternative and holistic medicine,” I was sold. I called and made an appointment for as soon as I could–which happened to be several days before the actual move.

The doctor was very understanding of our choice not to vaccinate yet, and even supportive of it as he learned more about Manny’s situation. I have found many swollen lymph glands on him–in the back of his neck, in his groin, and maybe some other places. For all we know, they are probably all swollen. This indicates an immune system response, and is likely a side effect of the allergies he has. His doctor believes that adding vaccinations to the picture is just not a good idea at this point.

Allergy Tests

While he encouraged me to continue using the hydrocortisone as needed to relieve the symptoms, and even suggested Benadryl (which actually made him break out more, so we stopped that), his main line of attack was with natural things. He did an IgG food sensitivity test and later an IgE food and environmental allergy test. The results told him that Manny has some kind of internal irritation that is causing the external manifestation of eczema; he is more or less sensitive to almost every food they tested on the IgG test, with a few exceptions (mostly meat, which we don’t eat, and random things like bananas and beets). He also had an IgE count of almost 3,000–the highest the pediatrician had ever seen–and was allergic to almost every food they tested, except chocolate and yeast and meat.

When we got the results of the IgG test back (the IgE test didn’t come until months later), I modified my diet to match up, hoping that his eczema would subside, even if only a little. It didn’t. Only the hydrocortisone helped anything. I began to dream of weaning him so that we could feed him an even more limited diet than I could manage to do myself, and maybe we could eliminate all the bad foods and he would clear up. So just before he turned 12 months I started the process of weaning him, cutting out one feeding per week, until by 2 weeks after his first birthday he was totally weaned. But his eczema didn’t clear up. Then I felt bad about weaning him, but I just couldn’t stay on his diet anymore. I ignored the criticism from those who said I should have nursed longer, knowing that I was doing the best I could. I had nursed my daughter for 20 months and wanted to nurse my son until 2 years at least, but I could not imagine another 12 months of eating such a bland, limited diet. In the end, I’m glad I did, because not long after weaning him we figured out that he was allergic to some of the things I had been using in my diet to replace things we already knew he was allergic to (for instance, he is highly allergic to sunflower seeds, which I was using to make a “sour cream” to replace the dairy version), and when we eliminated those foods, he stopped breaking out during meals like he had so many times when I was nursing him.

But back to the doctor. I was very pleased when he didn’t push steroids right off the bat; instead he suggested a regimen of probiotics, vitamin D, Omega 3 oils, digestive enzymes, and multivitamins. Over the months we found sources for all of these things in forms that he could handle (for instance, try finding multivitamins for children that don’t have some food substance in them took us quite a while). He also encouraged us to rotate his diet so that he didn’t eat the same foods every day, as a means of preventing new sensitivities from forming.

We Try Steroid Cream

Of course, by using the hydrocortisone .5% and sometimes the 1%, we were able to clear up the worst of the skin issues. His little cheeks no longer oozed, and the yeast infection in the folds of skin on his neck cleared up, since it was no longer raw and oozing there. Patches of good skin began to reappear around the areas of inflamed skin, and gradually the symptoms began to subside, little by little.

However, it never really cleared up. At his 18-month check-up (or maybe it was a 2 or 3 months later, I don’t remember) when the doctor asked if I would like to try something a little stronger to help control the symptoms, I agreed. He prescribed Triamcinalon, a medium-level steroid cream, and said to use it once a day or less, as needed, but not on the face or genitals.

I felt a little guilty about using this steroid, but at the same time, I realized that he was a much happier little boy. And besides, the steroid was not our main plan of attack. It was just something to keep the eczema at bay while we continued searching for the cause.

I remember there was a patch on my son’s wrist that had been encroaching on the back of his hand. The hydrocortisone had calmed it, but it simply would not go away. Manny’s father is Hispanic, so his natural skin color is a pale olive complexion. However, the eczema had bleached it as white as a readhead’s skin.  Wherever a patch of eczema would clear up, the skin would slowly get its natural color back. However, this patch would not clear up. Until I started putting the Triamcinalon on it. When I did, it cleared up and hasn’t come back! So now I don’t need to use it there anymore. That taught me that sometimes when the eczema gets too far, it really does need something to get it back under control. I can control pretty much anything on his arms with hydrocortisone and am using less of the Triamcinalon now that I did when I first started.

Of course, not every patch of eczema was that easy to clear up. But gradually his overall natural color began to show up, and some places would be almost cleared up at times. I finally got to where I was using the Triamcinalon only every other day, using just hyrocortisone on the odd days.

But I wasn’t able to cut it out entirely.

Allergist’s Opinion

Shortly after starting the Triamcinalon, at the suggestion of his doctor, we visited an allergist. That, for us, was a waste of time and money. I know many people have been helped by an allergist, but for us, by the time we went, we had already figured out almost everything he was truly allergic to, and the allergist wasn’t willing to subject such a young child to allergy testing, since he, as he put it, “he will probably outgrow most of them anyway.” Since being weaned at 12 months, he had been on a strict, fairly hypoallergenic diet, and we had also been on a fairly good moisturizing plan, so the allergist’s conclusion was that we were doing everything right and hopefully he would outgrow his allergies. And now we have a bill that we are hoping we can pay with our tax refund.

By this time, we had bought a house an hour away from my husband’s work–again. It was the only one we could afford that met most of our needs. We  decided to keep his pediatrician–especially when the allergist said he was one of the best pediatricians in the Portland area–but he was a pediatrician, not a skin disease specialist, and he was running out of ideas now too. He was convinced that the cause of Manny’s eczema was somehow tied to irritation in the gut, but he didn’t have the time or resources to really dig into that. So he suggested that we try going to a naturopath that specialized in gastrointestinal issues. So we made an appointment with the naturopath after our second visit to the allergist.

Next week I will tell you about the visits to the naturopath, what we tried, and what the results have been. That post will bring this story up to the the present day. This story is far from finished. But now you have an overview of my son’s life.

So in the mean time, please share with us about your experience with doctors and steroids–or your avoidance of either. Also, if you have something that worked for you, feel free to share it in the comments. If you want to share something with me but you don’t want to name it in the comments, please use the contact page to contact me directly. Thank you for reading and consider subscribing so you won’t miss the rest of the story!

This post is mentioned on Blogelina’s Blogging Buddy Blog Hop.

My Baby Has Eczema: Diet Disaster

Friday, January 14th, 2011

Last week I related the experience of how my son came down with eczema as a tiny baby. Trying to find the cause of it was an exercise in futility. My brother was born allergic to wheat and as a child suffered from many allergies, which he eventually outgrew sometime around puberty. So I was familiar with food allergies and had some ideas about how to deal with them. My basic understanding was this: Find the reactive foods, eliminate them, problem solved.

But it wasn’t that easy. I already mentioned last week how I tried cutting out one food at a time to test to see if that was it. This works if there are only one or two allergens–which usually is the case for most people–but it didn’t work for me. There was absolutely no change no matter what I was avoiding.

Some people speculated that maybe his eczema was not food related. But I knew otherwise. Sometimes when I was nursing him, I could practically watch him react. It was as though my milk were poison to him. Sometimes my husband would notice the reaction, and say, “He’s breaking out again.”. I began to dread him saying that. What could I do about it that I wasn’t already doing? I mean, he had to eat!

What About Formula?

We thought of trying some kind of formula, but the doctor did her best to discourage me from switching. After all, even though he was allergic to something in my milk, he was still getting the best nutrition possible. And for all we knew, he might be allergic to something in the formula. I learned later that there are hypoallergenic formulas out there, and we even got one when he was about 9 or 10 months old, but even that had corn syrup solids in it, and he has since proved to be very reactive to corn, so even if he had been willing to take a bottle, I’m not sure how well it would have worked.

My husband was convinced that if Manny could just get off my breastmilk and onto something he could handle, he would clear up. (I know now that this was not true, but we were still operating under the “some food is causing this allergy; eliminate the food(s) and the eczema will go away” assumption. We didn’t realize that allergies were only part of the equation in his case, and not necessarily the greater part.) After some research we decided to try goat’s milk formula. My mom’s milk supply ran low when I was about 3 months old, and she supplemented with goat’s milk. My very allergic brother thrived on it as well. So I figured it was worth a try

Now if you try to find goat’s milk formula, you won’t find it–at least, not in the States. You have to buy the ingredients and make it yourself. I found a source for fresh goat’s milk, got my hands on a good formula recipe, and made up a batch.

I don’t want to remember the day we tried to get him to drink it. He was about 6 months old by then and was firmly established with breastfeeding. He didn’t even want to take breastmilk from a bottle! My husband sat for hours while Manny cried for milk the way he was used to getting it and resisted the bottle with all the firmness a six-month-old can muster. I can’t tell you how hard it was to watch. I knew I had what he wanted–more and more as the hours passed–and it was killing me to listen to him cry. But Daddy was determined to try.

Finally he drank some. Then he vomited. Then he had a bad reaction on his skin. And he refused to drink more. I begged my husband to “Just let me feed my baby!” and he finally relented.

We never tried that again.

The Home Skin Test

We had much to learn, but eventually we figured out that certain foods would cause a hives-like reaction on his skin, and this was an indication that he was almost without question truly allergic to those foods. (Note: There is a difference between true allergies and sensitivities; one should avoid true allergens and limit contact with things they are merely sensitive to. This will be discussed more in depth later.) We have used this simple home skin test–rubbing an area of his skin with the food we are testing–with some success to test things  without actually giving them to him orally. Once we figured this out, we suddenly understood why he reacted the way he did to the goat’s milk: he is highly allergic to all forms of dairy, including goat’s milk. By trial and error we discovered that he is also without doubt truly allergic to wheat, all nuts, most seeds, kiwi, cranberry, and maybe one or two other things. But that wasn’t until months later, and I still had some of those in my diet when we finally weaned him.

Diet Restrictions Toughen

In an attempt to put our finger on what was causing the eczema and eliminate it, I began to cut more and more out of my diet. I was hoping that if I could just figure out all the things he was allergic to, he would stop breaking out. Meal preparation became a burden, because my husband and daughter didn’t join me in the restricted diet–meaning I had to cook two different meals. I would try to have at least one dish in common, and find a substitute for what I couldn’t have. Friends became concerned that I wasn’t getting enough nutrition to make good milk. I wasn’t so worried about that–as long as I was producing, I knew from the research that I had done that the milk itself would be fine–but it certainly did drain me. It was also very frustrating. I remember being hungry for a snack one evening, and I couldn’t find any snack foods that I could eat in the house. I was so desperate that I grabbed my purse and headed over to the local health food store (less than a mile away) and stocked up on rice crackers and other expensive snack items. Then I tried to make them last, because I didn’t have a lot of money in the food budget for things like that!

More than anything else, the restrictions that I was putting in my diet were all the more frustrating because of the lack of improvement. It didn’t matter what I tried; he just wasn’t getting better. The strain began to manifest itself in emotional issues. I came very near to a serious breakdown. I will share about that next week.

Have you ever dealt with eczema in a loved one–or yourself? Can you enter into the frustration that we were experiencing–trying to figure out the allergen(s) and not being able to pinpoint all of them? Please share with us  in the comments. If you have a blog about it, be sure to include a link. And consider subscribing so you won’t miss next week’s post, where I will delve into the emotional pain I experienced–and how I almost didn’t survive intact.