“Child’s Food Allergies Take Toll on Family Plans”…Well, DUH!

duhIn a March 15, 2009 news release from the American Academy of Allergy, Asthma & Immunology, two studies were introduced in advance of their presentation at the Academy’s upcoming Annual Meeting. These studies were about the toll that children’s food allergies could take on their families. From the press release:

In looking at the lives of thousands of caregivers to children, researchers at the University of Arkansas for Medical Sciences and Arkansas Children’s Hospital Research Institute in Little Rock found that caregivers with a food-allergic child were more likely to stop working, reduce work hours or incur financial problems.

I don’t know about you, but to me this is a no-brainer. When your child has food allergies, it changes your life, forces you to re-evaluate your entire lifestyle.

In our case, the diagnosis phase nearly broke the bank. Our son was only a small baby when we started seeing serious symptoms of what we now know to be serious reactions to many foods. Before we figured out what we were dealing with we spent time running from emergency room to doctor’s office to naturopath to pharmacy to health food store. We tried every lotion and cream we could find for our son’s eczema. I was already home with him, as planned; But I had been self-employed prior to his birth, so no Maternity Leave for me. That left us with one income – my husband’s. And when Gabriel got really sick, sometimes he had to take time off work to back me up or drive us to (or visit us at) out-of-region hospitals.

Now, we are fortunate enough to be living in Canada, where our health care system permits us to get the care we need – within certain limitations – without paying for it out of pocket. But things like Naturopathy are not covered under that system, so we did have to pay for that ourselves. Same goes for prescription medications (unless one has a private drug plan, which we don’t), over-the-counter products and the aforementioned array of lotions & creams. Not to mention food for the mother of an infant admitted to hospital. Obviously I had to stay in his room with him – he was a breast-fed baby, and the hospital stays all occurred while he was less than 6 months old. (Regardless of his food source, nothing could have kept me away). But as I was not the patient, the hospital was not responsible to feed me. I was expected to pay for that myself. (cafeteria food, ack!)

Despite our financial limitations we were bound and determined to find the root cause of his symptoms, not to simply mask them. The western medical approach always seemed to us to be geared toward controlling symptoms, not to finding underlying causes. One doctor that we saw in the ER was even prepared to write us a prescription for something that he was unwilling to test for! I had to ask him to repeat himself, I was so surprised by this. We therefore sought to add a Naturopath to our team of health-care professionals. (We did not cut our family doctor out of the loop, but we did choose to follow this path for a time in order to get closer to the truth of my son’s condition.) A naturopath’s services are not covered under OHIP, nor were the remedies that she prescribed to us.

The long and the short of all this is that by the time we were discharged from hospital for the third time, our finances were depleted to the point where we were several months behind on our bills. How anyone living in a country that doesn’t have a health care system like ours could possibly afford to do this is a mystery to me!

But beyond the short-term, diagnostic phase of allergic living, there are the ongoing costs associated with keeping your child(ren) allergen-free. Special diets are sometimes required, particularly when a child has multiple food allergens, or has an allergy that eliminates an entire food group, such as dairy. (Both of these are true of my son.) The nutrients are still required, so they must come from other sources. Not only is this a bit of a think – and again our health care system saved us some worry in the form of publicly funded nutrition counseling. (the nutritionist even came to our home to meet with us) – but once substitutes are found they are usually more expensive. Usually a lot more expensive.

And then there are the prescriptions. For example, the mainstay fail-safe for anaphylaxis is an Epi-Pen, which runs something in the neighbourhood of $100 – and those darn things carry an expiry date! Now $100 doesn’t sound like a lot of money, particularly when it is your child’s life we’re talking about, but there are lots of folks out there that would have some real trouble liberating that $100 from their monthly budget. And that’s just ONE prescription medication.

As for our single-income family, it is likely to remain as such for a time. More-or-less. While I won’t be returning to the workforce any time soon, I do work from home on a part-time basis, so I can pull in an income of sorts to help out. But if our son’s allergies remain as they are, we can’t see putting him into the school system. If he were allergic to one or two things, maybe it could be manageable – but six or seven common foods and a host of other allergies make it difficult at best, and terrifying at worst. We are currently considering home-schooling for a time at least. More on that in a future post.

The second study undertaken by the same group as above was about the vacation habits of families with food allergies:

A second study found that most families that have members with food allergies limit their vacation destinations because of the condition, with 90 percent saying it causes them to vacation only in the United States.

In studying questionnaires filled out by 410 people with a food-allergic family member, researchers found that 68 percent of participants limited where they went and more than a third avoided certain types of transportation, such as ships and planes.

Concern about having adequate medical care at a vacation spot was the most common parameter on vacation location, the researchers found, suggesting that tourist spots may want to have better access to medical care and arrange for special accommodation for those with food allergies.

Again, I say – “no-brainer”. We have enough trouble just planning a trip to the park, and have had enough unexplained allergic reactions while out and about to make us cautious. Visiting family out-of-town is nerve-wracking, necessitating detailed and careful planning and lots of advance preparation.

And even with such planning…

A family baby shower was a nightmare to attend with my then 16-month-old son, with much of the food placed at kid-level on coffee tables and the like, and pretty much all of it on the “no-no” list for him! I finally had to ask the host – my aunt – to move all the food to higher locales, and made an announcement to the room at large that if anyone saw this child walking around with food in his hand, to please take it away from him! I had, of course, packed his lunch and snacks, and fed him under close supervision. But I couldn’t control what other children there were doing, and most of them were trucking around with food clutched in their little fists. And of course the adults were eating off paper plates which they would then abandon on whatever flat surface was convenient, usually a low table, and usually with some leftovers still on the plate. What should have been a nice chance to visit with my family became a difficult day of hyper-vigilant kid-watching. Seriously UN-fun. HE had a blast, though, the monkey.

I remember when I was a kid that when we would go to family ‘things’, all the adults kind of corralled all the kids as a group. That meant that the grown-ups got the chance to really visit with one another while rotating ‘kid-patrol’ duties among themselves. We can’t really do that with our son, at least not while he’s still too young to know which foods to steer clear of. One of us really needs to stay nearby any time there is food around. And most family functions seem to include food, available any time and from many locations.

Do food allergies take a toll on our family’s plans? Hell, yeah!

Vacation? Maybe next year!!

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