Posts Tagged ‘doctor’

Too Many Allergies! Update on Manny

Wednesday, March 7th, 2012

Okay, it’s been a while since I shared about Manny and how it’s going working with his eczema. We went to the doctor today, and I decided it was time to record some things.

First, his eczema is pretty much under control, but he still gets itchy. And he keeps breaking out around his mouth–and if we don’t put something on it for a few days (which is hard, because he hates me putting anything on his face), it gets dry and cracked and peels and bleeds and, well, yeah, not good.

We have tried various and sundry supplements. We have taken him off of beans for the most part, added chicken once a week, and try to get down hemp protein and chia seeds whenever possible. And quinoa and amaranth are complete proteins (meaning they contain all the essential amino acids), and he likes them more or less.

At the last visit, I asked if we could do a test of several foods that were not on the normal IgE test. So we made a list of about a dozen foods–things like spinach, cucumber, apples, carrots, etc. I was floored by the results. Every single one of them was either moderate, high, or very high. As the doctor put it, at the moderate level, doctors prescribe epi pens just to be safe. At the higher levels, there is risk for anaphylactic shock. Granted, my son has never had that. The worst reaction he has ever had could best be described as a mild case of asthma, with wheezing and excess mucus. It usually only lasts 10-15 minutes. Also, the quantity of food determines the severity of his reaction. He doesn’t appear to react at all to minuscule amounts of allergens–for instance, I make nut milk in the same blender that I make his rice milk, and there is no way I can thoroughly clean the blade. So I couldn’t give his rice milk to someone who got anaphylaxis from, say, almonds, because they would probably end up in the hospital. On the other hand, if I gave him a teaspoon of almond milk, he would probably have some kind of immediate reaction–exactly what would be hard to say, since he’s never had any.

One reason we have been going to a naturopath is that we like taking a natural approach first and foremost. But we are running out of options. Today he started talking about what antihistamines we had tried, and had we ever tried oral steroids.

Now, many people trying the natural approach would shy away from steroids of any kind, especially oral ones. But I didn’t bat an eye. You see, I had an experience once when my left eyelid became inflamed, and there was no apparent cause. The doctor was puzzled; she had never seen anything like it. She tried a mild steroid for about 5 days, and it improved, but as soon as I ran out, it came back. She tried Prednisone for about 7 or 8 days, but it had the same reaction. I ran out near the weekend, and by Saturday I was very uncomfortable. My eyelid was almost swollen shut, and it was very irritated (thankfully they eye itself was never affected). As a Seventh-day Adventist, I attend church on Saturday, and do not believe in conducting business on that day. However, when one of the elder’s wives told me that I really shouldn’t wait for Monday, but should go to a doctor that very afternoon, I went. She told me of a Mexican doctor right on my way home, and even though I got there about 15 minutes after closing time, she was still there and took pity on me. She showed me a picture in one of her books of the very condition I had, gave me a longer dose of Prednisone and I think some cream, and it went away and never came back.

I do not believe that the Prednisone cured me. I believe it simply calmed the inflammation long enough for my body to deal with whatever was causing the problem and to heal itself. That is what the naturopath was thinking when he recommended the oral steroids. He said we would taper it, just like I did for my eyelid, and that the idea would be to simply give his digestive system a chance to calm down and heal a little. Because his allergies are just out of control. Honestly, the only things he has ever tested not allergic to are meat and chocolate. We haven’t tested any gluten-free grains, but all of them (except buckwheat, which is as bad as milk) seem to be okay. At least, we are trying to keep a little variety!

So I decided to try Zyrtec. We had already tried Benadryl (he reacted to it) and Claratin (no reaction, but no improvement, either), so that was our next OTC choice. I think there is one more option if we ever need it; after that, we would have to look at prescription antihistamines. We already tried one, but either it tasted so bad that it gagged him, or he reacted to it and threw it up. He was too young to ask, but whatever it was, I’m not trying it again! (I’m sure the doctor has a record of what prescriptions he gave back then, so I could ask for a different one if needed.)

We are also going to look into L-glutamine. I can’t remember if we ever tried it or not, and I can’t remember where I heard about it, but I know I’ve heard of it before. We’re going to see if it has any effect on him at all. I think the steroids would be the last resort.

At the suggestion of a couple of people, I decided to test pumpkin seeds on Manny. He had never had them before. I started with a simple skin test. I crushed one seed between two spoons and rubbed some of the crumbs between my fingers until they felt oily. Then I rubbed this into the back of his knee, in the soft skin where he has recently broken out (at the moment, it’s pretty clear). When no reaction showed after several minutes, I let him try a tiny bit of the crushed seed. [Please note: If your child has a history of anaphylaxis, you may want to try such a test under a doctor's supervision; my son has never had any form of anaphylaxis, and the severity of his reactions are directly proportional to the amount of allergen consumed. He does not appear highly sensitive to small amounts of contamination, or I would probably ask his doctor to do an allergy test before testing any food orally. I would strongly recommend that you talk to your doctor about doing such home tests on your child.]

When he still had no reaction–including no funny sensations in his mouth, such as he had with coconut and cashew–I gave him the rest of the crushed seed, followed by one whole seed. He really liked them, and didn’t seem to react at all. No congestion, no “allergy asthma” (this is the best description I have heard for one of the reactions he gets), no itchiness, nothing. So I posted on Facebook that I was “cautiously optimistic” about the seeds.

That night, however, he was restless. After being put to bed, he fell asleep quickly, but then would keep waking and calling for Mama or just groaning or fussing and rubbing his eyes and scratching his neck (which is somewhat irritated still). I had observed this behavior before, usually after consuming such small quantities of allergens that he had no reaction at the time of consumption. One example would be the night after he ate the gluten-free pasta at the Olive Garden. I found out later that it is made with corn, tomatoes, cheese, and a number of other known allergens. I wish they would just serve rice pasta! But I digress.

I had gone to the pharmacy earlier in the evening and purchased the generic Zyrtec antihistamine, and when my husband started complaining about how he wasn’t going to get any sleep that night (and I began to wonder if I would either), it occurred to me to give him a dose. So I did. He only whined once after that, and then slept peacefully the rest of the night. So apparently Zyrtec is the drug of choice for Manny. I like that it only has to be given once a day, unlike Benadryl. So if it causes drowsiness, I will just give the dose in the evening and put him to bed. He’s over any drowsiness he might have by morning, so it works out well.

So that’s where we are at. Still struggling with his diet–especially now that he is in the very picky/doesn’t like anything stage (normal for his age, but very trying, since his choices are already so limited). Top that off with him being hungry all the time (I think he might be growing), and, well, you can probably relate if you are reading this, because either your child has eczema too, or someone close to you does. So wish me luck, and if you have any ideas, please share them!

Will Rogers Institute Raises Asthma Awareness

Tuesday, October 25th, 2011

Did you know that there are currently over 7 million children in the U.S. who suffer from asthma? And that children with eczema are at higher risk of developing asthma?  The Will Rogers Institute, the nonprofit organization dedicated to promoting medical research and educating the general public on topics of health and fitness, is sharing an exclusive Public Service Announcement campaign with us!

It’s startling to learn, but asthma has been identified as one of the country’s most common and costly illnesses!  Because of this fact, we must do everything we can to educate and discuss this condition and help change these statistics for the future of our children.   WRI has released a new PSA campaign that highlights the danger signs and health risks associated with asthma, starring Emmy award winning actor Bryan Cranston, best known for his starring role in the AMC drama series Breaking Bad.

For an exclusive look at the PSA, please visit the campaign page: www.westglen.com/online/wripsa.html

This fall, with the help of Cranston, WRI is getting out there and sharing this PSA with the public and I encourage you all to pass along this information to loved ones as well.  The simple signs of asthma to look out for include:

  • Difficulty breathing
  • Wheezing
  • Coughing
  • Shortness of breath

Take notice of these signs and symptoms and determine whether it’s appropriate to talk to your child’s doctor about asthma. Together, by educating, we can really make a difference.

For even more information, including free health booklets, please visit: www.WRInstitute.org.

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: Emotional Emergency

Friday, January 21st, 2011

By Heo2035 on Flickr

The emotional frustration of watching my child suffer began to manifest itself in troubling ways. My husband’s work was an hour away, which meant that I had to get up early and get his meals ready. Manny wasn’t sleeping through the night, and he and his sister rarely napped at the same time, so I was gradually becoming more and more sleep deprived. And on top of it all, Manny continued to get worse. I felt like I was headed for a breakdown. I just couldn’t take much more.

I felt like I needed some kind of outlet–some way to just forget the problem I was facing. Facebook became an obsession–especially the games. I alsodiscovered that I could watch movies online for free, and I wasted hours watching things I wish I had never watched. Nothing really horrible, mind you, just I wish I hadn’t wasted my time there. I justified it at the time by telling myself that I didn’t have the energy for anything else, but I still felt very guilty about what I was doing, and especially for all the things I was neglecting to do. That guilt began to eat away at my self respect, which which just made me feel worse. It was a vicious cycle.

My daughter was getting out of control during this time. The girl that had been so cheerfully obedient before age 2 was becoming just like every two-year-old in the world. It was very discouraging, because I didn’t have the the motivation to do what I knew what I knew I should to get her back to where she had been.

Vacation Made It Worse

Thinking that getting away for a while would help, I went to visit my cousins who had come out from back east to stay with family who lived just a few hours away. I took the kids with me for the 3 hour trip, and my husband joined me a week later. It was a nice change of pace, but thanks to late-night games and visiting, I got even more behind on sleep, and Manny was as bad as ever. This made it very hard for me. I actually hunted up a doctor nearby to see if there was something I could do to help him. I was leery of going to a regular MD (I’ll discuss this more in a future post), so I found a naturopath. She was very nice, but not very helpful. I came away with an expensive skin cream and advice to go gluten free. But I just couldn’t go gluten free yet–not on vacation–and the cream didn’t really help in the long run.

When I got home, things really got out of control. I was more sleep-deprived from the vacation than I had been before, and I couldn’t catch up. Fatigue from lack of sleep combined with emotional distress to make my life almost unbearable. I wasn’t coping anymore. So I retreated deeper into myself, spending more and more time on my coping mechanisms–movies, games, etc. Of course that didn’t help. I began to resent my son, which of course made me feel even more guilty. I would break down and cry for no apparent reason. This really frustrated my husband; at times he didn’t want to come home from work to face the turmoil he knew would be there.

Trying to convey exactly how I felt is difficult. Of course, if you are reading this blog, you just might know exactly what I was going through! It was such a complex mixture of guilt and frustration that I haven’t even yet sorted it out. All I know is that watching my little boy suffer was the hardest thing for me. Nothing was working. There didn’t seem to be any natural cream available that would calm the itch, and figuring out what was causing the eczema in the first place seemed futile.

Fear of Steroids

During this time, I was in mortal dread of using steroids of any kind. I used hydrocortisone .5% as sparingly as possible, and only on the worst areas. I had read of people who cleared their child’s skin with steroids, only to have the rash come back with a vengeance once they stopped. I had heard that there was a connection between eczema and asthma, and I tended to believe the theory that the suppression of the skin inflammation pushed the reaction inward to the lungs, thus causing asthma. I do not known if this is true or not; I’m sure allergists have some other fancy explanation for it. All I knew is that my son didn’t have asthma, and I didn’t want him to get it.  Suffice it to say that I was very leery of using any steroid at all–even one as minor as hydrocortisone. Also, I kept hearing from other eczema sufferers to avoid steroids at all cost, and wanting what was best for my baby, I took their advice.

My husband supported my choices of treatment for the most part, but from other family members and friends I got a lot of criticism. “Why don’t you take him to a real doctor?” was a line I heard many times. Apparently a naturopath wasn’t considered a real doctor. “He needs to see an allergist; maybe you can figure out what all he is allergic to.” No one seemed to understand my desire to exhaust as many natural, alternative options as I could before I submitted to a more traditional approach. We tried homeopathy, a form of acupuncture known as NAET (acupressure, actually), various creams and lotions–I even made my own skin cream! Nothing worked.

I got to the lowest point just shortly before we moved. We had decided that we would move to the city where my husband worked so that he could spend more time at home and less driving. So my husband started looking for a house to rent near his work, and I tried to pack.

Near Breakdown Decisions

Around the time we were making the decision to move, I had one of my mini-breakdowns–crying uncontrollably and just needing reassurance. I called one of my friends from church, hoping she would point me to the Lord, since I felt so disconnected from God. Instead, she did her best to wake me up to the fact that if I didn’t do something, I was not going to be able to care for my children much longer. She even got an appointment for me at some clinic so my son could be seen by a “real” doctor. I resented that, as did my husband, and we asked her to cancel it. However, I realized that with the upcoming move, I needed to find a local doctor, so I began hunting. And I also realized that my friend had a point. If I had a mental breakdown, I wasn’t going to be able to function even the little that I still was.

That week I started using the hydrocortisone .5% wherever there was irritation, not just in the worst spots.

Next week I will share about how I picked a new doctor and the changes that we made as a result.

Can you relate to my pain? What was it like for you to watch your child suffer and feel so helpless? If you want to talk about it, this is the place. Feel free to share in the comments or join the blogfrog community and start a discussion. And don’t forget to subscribe so you won’t miss the rest of the story.

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Breaking News!

One of my readers just contacted me about a skin cream that has helped a couple of eczema sufferers that she knows. She graciously offered to send me some samples. I am going to test itfor two weeks and take notes on the effects. When I’m done, I will share the results with you right here on this blog, so stay tuned!