Posts Tagged ‘control’

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!

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!