Natural remedies (and some more IgA info)

The reason I'm posting this is because I've noticed a number of people stopping by this site using "IgA deficient" or "immune deficiency" as search terms. So, I wanted to share a couple of naturopathic, homeopathic, and regular ol' home remedies that helped Cora weather this cold (and get through an inner ear infection without antibiotics). It's the kind of information I was searching for when Cora was diagnosed. This is in NO WAY intended to be advice that you should follow over and above the recommendations of your caring pediatrician, but I have enjoyed Cora's new doctor so much because he's been a practicing MD for over 30 years and gets rave reviews from all his patients and he and his colleagues at this office are also knowledgeable about natural modalities.

(Note: If you're reading this post and you or your child has IgA deficiency, you might be interested in reading this entry as well.)

One thing worth noting is that Cora's former doctor explained that we should start treating an infection much more quickly and aggressively due to her IgA deficiency--using higher spectrum antibiotics quickly and for longer periods of time, if necessary. I do understand this point of view. However, Cora's new doctor pointed out that, while he absolutely prescribes antibiotics when necessary, antibiotics can lower IgA. Which makes sense, because IgA lives on mucosa sites. Antibiotics can lower healthy antibody levels (like IgA) along with other healthy flora that can help a body fight infection. This is one reason why people are more susceptible to infection in the week(s) directly following a course of antibiotics.

So, without a lot of further ado, here are a few of the things that Cora's new doctor and his colleagues recommended. Again, I want to make it clear that I'm not saying these products will necessarily help you or your children--but if they do, wonderful!

The first two items are daily doses for Cora. Honestly, I don't think there's any reason why any healthy kid couldn't benefit from these, simply to help augment their general nutrition intake, or to help round out any deficiencies in their diet:

*Liquid kid's multivitamin (I use Schiff because it contains iron, but Cora likes ChildLife better--no iron, no yucky metal taste). I found this at Whole Foods.

*Kid's acidophilous. We use Primadophilus Children by Nature's Way, which we found at Whole Foods. Cora's doctor gave me a list of acidophilous products that have been proven to contain the levels of bifidobacteria and lacobacilli that can populate the system with healthy flora, particularly those lost during infection or during antibiotic treatment. A lot of products lose their potency once they hit the shelves; supposedly this product doesn't.

These items may have helped clear Cora's ear infection:

*Honey Gardens Apitherapy Honey Organic Elderberry Syrup, with Propolis (www.honeygardens.com). I also found this at Whole Foods. Elderberry and Propolis are considered powerful anti-viral supplements. The honey in this mixture is locally sourced and organic. We gave her a teaspoon of this every hour the first day of her infection, and a teaspoon every 1-3 hours the second and third days of her infection.

*Saline drops. We used generic stuff from Safeway, but there's probably better stuff out there. 2-3 drops in each side of the nose as many times a day as necessary to help clear out the sinuses. (We use a kid's safety syringe to suck out the junk.) This is Cora's least favorite therapy, but the saline solution helps clear sinus infections--which, in turn, drain into kids' immature eustachian tubes, causing a build-up of bacteria that leads to an ear infection. I remember going to my doctor when I had a sinus infection and instead of giving me antibiotics, he told me to snort salt water three times a day for three days. It sucked, but it worked.

*Ear Oil from The Herbalist (www.theherbalist.com). CAUTION: Seek the advice of a pediatrician prior to putting anything in your child's ear. Don't put anything in your child's ear if liquid or pus is draining out of her ear. If using ear oil, test the temperature on your wrist before administering it; it can get warm quite quickly, and can become way too hot to put in someone's ear. This tincture contains mullein flower, St. John's Wort flower, and organically grown calendula flower with garlic essential oil in a base of olive oil. Sound stinky? It is. But as completely crazy at it sounds, the combination of garlic (a powerful antiseptic) and warm oil can sometimes help clear (and prevent) an ear infection. I just set the bottle in a cup of warm water before putting a few drops of the oil in her ears, then place a portion of a clean cotton ball in each ear to help absorb excess oil and protect her ears from drafts. For nap and bedtime, I put her in bed with her bad ear facing up, allowing the oil to drain more effectively into her ear.

*Cora also had a mild viral form of pink eye. We treated it with Similasan Pink Eye Relief (www.similasanUSA.com), a homeopathic remedy that helps alleviate the symptoms of pink eye and deliver relief. I also found this at Whole Foods. It totally worked for her. I think I gave it to her about 4 times a day for the first two days, then three times a day the 3rd and 4th days, and now just at night.

These techniques helped ease her pain without Tylenol or Motrin:

*Warm, dry ear compresses. I used one of Brian's clean athletic socks and filled it with rice, then zapped it in the microwave for about 45-60 seconds. I placed this on her ear after adding the ear oil, then read her a book or nursed her. I also put it on her ear while she was sleeping.

*Ear massage. This is one of the most simple things to do, and aside from compresses, is perhaps the one therapy that makes the most sense physically. I massaged gently around her ear, pressing in and down along her outer cheek, and in and down behind her ear. (For a cheesy how-to video, check this out.)

Lastly, we kept Cora off sugar and fed her mainly warm foods and liquids, like chicken soup and chamomile tea.

For more detailed information on ear infections, here's a link to Dr. Sears's perspectives.

Hopefully some of this information is useful. If you have any other ideas you'd like to share, please do so.

Cora's ears

We managed to clear Cora's ear infection last week and didn't need to put her on antibiotics. Yay! She's still struggling with a lot of congestion and has now been sick for nearly three weeks, but she's stayed in happy spirits nearly the whole time. We're not sure if she got two colds in a row, or just has had a tough time fighting this one.

More soon.

The life of a child

So, Cora has an ear infection. She's miserable and I feel horrible for her. We're going to wait 48 hrs to see if it clears on its own. Right now she's asleep with ear oil in her ears and a warm compress on her bad ear. I feel discouraged and anxious about the future, but I have decided that she will be one of the strongest, most resilient little people because of her IgA deficiency. She'll develop a strong immune system and a great sense of humor. And she'll weather everything, even this nasty little thing going around called a pandemic.

I was in the doctor's office and this quote, tucked in a corner on a handmade plaque, caught my eye. I guess I'm feeling a bit emotional because it brought a few tears to my eyes:

"A hundred years from now it will not matter what my bank account was, the sort of house I lived in, or the kind of car I drove...but the world may be different because I was important in the life of a child."

If I could tell you how much I think about Cora's life, I would. But I can't. Being her mom is the most humbling experience I've ever encountered.

IgA and ABCs

As much as I've missed writing here, I've been feeling lost about where to begin.

I'll start with the fact that Cora's test results came back over a week ago. She was diagnosed with an immunodeficiency called Selective IgA Deficiency. According to our doctor, about 1 in 700 people have immunoglobulin A (IgA) deficiency, making it the most common immunodeficiency. Her tests weren't able to detect IgA, the antibody produced by B cells to ward off infection at mucousal sites throughout the body. Basically it means that Cora's nose, eyes, ears, throat, GI and urogenital systems are more susceptible to disease than in people with normal levels of IgA. IgA plays an important role in fighting infection because it is the first antibody to "rise to the occasion" and start battling an invader. It reaches peak levels before IgM and IgG (blood components) take over. Cora's IgG and IgM counts appear to be normal.

(Note: If you're reading this entry, you might be interested in reading this post as well.)

Research shows that 25-50% of IgA deficient people develop an autoimmune disorder (I've read 40% as the average in other sources). Lupus, rheumatoid arthritis, and other immune disorders seem to be more common in IgA deficient people over time. They are also more susceptible to pneumonia and HIV, can't receive live viral immunizations because they could actually contract the disease, might not produce appropriate antibodies to "take" a vaccination properly, and are susceptible to anaphylactic death from blood transfusions due to a violent reaction to IgA in donor blood. (If necessary, they are often able to receive "cleaned" blood from which IgA has been removed.) Although many people spend most of their lives asymptomatic, they generally just get a lot more runny noses, colds, sinus infections, ear infections, etc., than the common person. Currently, there is no treatment for this deficiency. Antibiotics have been shown to reduce IgA levels.

Concurrent with Cora's test results, we were pretty affected by the H1N1 flu headlines during its initial outbreak. Some people have commented that they didn't pay any attention to the news because it just seemed like a bunch of hype about the typical flu, but I think that if they had read any of the articles they might have felt differently. Avian flu, which is one of the viruses in this strain, has a 60% mortality rate, and the WHO currently predicts that if the H1N1 virus continues to mutate, we might see two billion people get sick, and a number of them die.

These scary statistics unravelled me for a few days. I worried intensely about Cora on several levels; not just about her health, but about her development and childhood happiness, too. It doesn't seem fair to be relegated to a life of careful hand washing and hand sanitizer, to a stream of colds and flus or missed school days, sled days, or sunny adventures.

After a tense week of trying to hold myself together, I took a cue from my daughter: I had a good, long cry. I felt so much better afterward. After it's all out there, it's easier to turn to a more reasonable perspective, to see how tiny our diagnosis is in comparison to what it could have been.

The good news is that Cora is only 16 months old, and the immune system isn't fully developed until age 2, which means there's a chance her body will still develop IgA. Every night as we put Cora to bed, we imagine her whole body lit up with B cells busily creating IgA. We are hoping that she will have a dramatic turnaround and will produce IgA in beautiful amounts in time to retest her after her 2nd birthday.

(If you'd like to imagine Cora's immune system totally intact, feel free to send your wonderfully positive thoughts her way.)

This news has left me frankly bewildered about a few things. I was not familiar with the components of an immune system until I began researching it and talking with Cora's doctor. One major question is why don't doctors regularly test immune system components at an earlier age? If Cora can't tolerate a live vaccine, then why is every child instructed to have the MMR vaccine at 12 months? Or the live polio virus at an even younger age? Or even the live flu vaccine? Why is it OK to proceed with one set protocol when all children are not created equal? I am thankful that we took a slower approach to vaccinations and weren't planning to vaccinate with MMR until 5 years or even older, and chose not to immunize against polio yet, but it's not a universally-accepted approach. Even though vaccinations in general have certainly gained a lot more attention in the past few years, it's a lot easier to feel fine about the whole thing if your kid gets through their vaccinations without any issues, but if you take a good hard look at the possible complications, the vaccine injury hotline, and the potential that your child might have an immune disorder (or, according to some sources, might develop one after an immunization), it starts to feel very clearly like something that should generally be approached with more caution that it currently is.

Update: The US Dept of Health and Human Services's Vaccine Injury Table lists polio and measles infection due to administration of certain vaccinations to an immune-compromised person. See 5B and 6A and 6B. I asked Cora's former doctor to look into the effects of MMR on an immune-compromised (in this case, IgA deficient) child. She followed up with a top immunologist at Seattle Children's Hospital who said that while there isn't any data to show that an IgA deficient person shouldn't receive the MMR vaccine, he said to 'proceed with great caution'. I said to Cora's doctor, "So don't get it." She responded, "right."

I don't care if it's costly, or even unnecessary to test 699 kids, it's the 700th one that I worry about. (Some sources say IgA deficiency is as common as 1 in every 400, making it even more alarming to consider the number of kids who shouldn't receive a live vaccine.)

I am a huge proponent of public health initiatives that protect vulnerable populations, reduce deadly diseases, and result in a healthier population over time. I understand the herd mentality of vaccinations, and in general I believe in their stated benefits. What I have a hard time with is learning about the fact that my child can't tolerate live vaccines, or viral vaccines very well in general, after the age when she normally would have received such an injection. We got lucky. I feel that there is a lot more study and thought that should go into the administration of vaccinations. Who should receive them? Who shouldn't?

How on earth do parents deal with a diagnosis of leukemia? Brain cancer? AIDS? It must feel as if the earth comes to a complete halt, that you are fighting through fog, that all you want to do is run to the highest mountain and hide your child away in a meadow feeding her nothing but the purest air and water and whole foods while searching for the absolute best medical care in the world. I send those parents my heart.

Cora is doing really well, she hasn't been sick for over two weeks and she runs (never walks) full-tilt through the hallways, pitter-pattering her way laughingly through her days. She is obsessed with a big ABC book that we read everyday, and she points to labels now and says "ABCs" in recognition of the words there. She's back to her animated, lively little self.

The summer is ahead of us. We can't wait. We're looking forward to beach combing, swimming in outdoor saltwater pools, having picnics, going hiking, running through the sprinkler, and exploring other classic summer joys.