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Have Library Card, Will Use It (and Lose It and Rediscover It)

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In the first office visit we had after Max’s food allergy diagnosis (see Our Journey), one of the last things the pediatrician said to us was “Oh, and you are going to need some cookbooks.” I remember it well because it was kind of a throw away line for her, but we were a young couple with a new house and a new baby and a lot of new baby gear and another new baby on the way and money was tight. Here was another thing (on top of these new unexpected medical bills) that was going to be a struggle to afford. I knew though that she was right. Then the idea of the library occurred to me. I stopped by and it turned out they had more cookbooks devoted to food allergies than you would have thought. At first, I was psyched. Then I read them. I was a lot less psyched.

Books specializing in allergy friendly cooking tend to take an all or nothing approach. That is terrific if you are on an elimination diet trying to figure out what is causing your digestive problems and wanting to cut all the top-eight allergens. If you are cutting out eggs and soy and dairy though, you actually want to have recipes that embrace corn and fish and sugar. OK maybe not embrace sugar, but I wasn’t interested in subbing for maple sugar or agave or honey when I was still new to specialty shopping. Picking out rice milk still felt strange. Really I’ve never been clear why so many allergy books shy away from sugar in the first place, but it just makes an already overwhelming process more overwhelming. Vegan books are a good alternative for dealing with eggs and dairy allergies, but they often rely heavily on tofu and soy. Sometimes you just want meat. Still I dutifully checked out some of these books. Between them and the even then plentiful recipe sites on the Internet, I picked up enough tips to get by without spending a fortune on new cookbooks.

The bad first impression must have stuck with me. After I got the hang of it, I never really sought out many cookbooks. If a favorite blogger had a new one (Food Allergy Mama was a good example), I would consider buying it. but I hadn’t been back to the food allergy cooking section of the library in several year until this fall. My kids were picking out books for the week from the children’s section, and I was already in the middle of a novel I knew I couldn’t finish before our next library check. I went to the cookbook section and did some browsing, and much to my delight amid my old favorite “regular” cookbooks there were now all kinds of new food-allergy friendly choices. Some of them focused just on dairy and others included sections devoted to different allergens. My favorite, Allergy Friendly Foods for Families, has an index card list on the outside of the page that lets the reader know immediately which recipe is free of which allergen and then had instruction inside on how to adapt some of the recipes to suit your particular concerns be they just dairy or dairy, eggs and soy or wheat and eggs. So brilliant. I wished I had thought of it myself about 10 years ago.

One old frustration that still seems to crop up in some books, particularly books devoted to just dairy avoidance, is a half-in approach. I know they are thinking of people with lactose intolerance and those folks don’t need to be as strict, but recipes that rely on cheese or butter used in the baking don’t qualify as dairy free to me. There are any number of other cookbooks where a reader can find that information. Please don’t litter my dairy free book with them. Ha! For whatever reason, these books also seem to have the worst prose and are prone to confuse allergy with intolerance which just makes it harder for people with allergies to get taken seriously. Luckily you can usually tell in a sentence or two which ones these are. If I ever need to raise my blood pressure quickly, I’ll know just what to read.

Still the bottom line is we have a lot more good cookbook choices today. While not all of them I have picked up have lived up to my new hopes, I have found some keepers. Even some of the ones I have been reluctant to try, have gotten me feeling more inspired and hopeful.I think one thing you can say about cookbook writers who cater to those with food allergies is that they are creative. Pasta with hummus instead of red sauce. Really? Who thinks to try that the first time? Egg benedict with poached vegetables instead of the eggs. OK. Actualy it sounds a little more healthful and kind of yum even if vegetables for breakfast is still a kind of weird notion to me. We’re still working our way through my latest pile of books, but I will share a few of my favorites: The Food Allergy Mama’s Easy, Fast Family Meals, Allergy-Friendly Food for Families, Cooking Free: 200 Flavorful Recipes for People with Food Allergies and Multiple Sensitivities and The Everyday Dairy Free Cookbook.


Double Take

Double Take

We’ve been in a dinner rut lately, and I’ve been searching out some new recipes. With all the information available online and in the rabbit hole that is Pinterest, I decided it best to avoid those altogether. While I still like shaking the dust off the jacket and cracking the spine on a well-loved cookbook, many of mine are, perhaps fittingly, still gathering dust and injuring their spines crammed in boxes from our move three years ago. Thus I turned to the library’s cookbook section. In this case, it was the second time I had checked out a copy of Lynne Roseetto Kasper’s book, “How to Eat Supper.”
I know I have previously (rather sheepishly) admitted to being an NPR junkie, and that’s where I discovered her and her radio show, “The Splendid Table.” What I like about her in particular is that she is realistic. She tells you you should make your broth from scratch and that it is easy (and I will add safer as broth often has added dairy), but she also says she knows you won’t do it. Thus she offers shortcuts to make the boxed stuff taste better. Practical tips are what I need to get out of my rut. Browsing through her pasta section, a particular strong point for her, I came across a tuna-noodle recipe,, which she said could be done in under 30 minutes and which she described as kid friendly.
I had pasta and a can of tuna I had been waiting to use since last winter when I was stocking up on foods that would keep when the power went off in a snowstorm, which it didn’t since it barely dipped below 60 here last winter (not complaining just explaining). Of course I couldn’t eat my snowstorm stash during the summer. That would be wrong. But now that’s it fall I think it’s OK. Besides, we had recipe and ingredients, I am going to call that serendipity or close enough! Certainly, I was intrigued enough to give it a try.
Still, there’s kid friendly and there’s *my kids* friendly. In the proper mood, Max and Claire very well might gobble up the tuna and ask for more. If they were having a bad day or the moon was out of alignment or they had an extra glass or two of soy after school when I wasn’t looking, it was possible they would boycott. Usually I cope with this unpredictability by pairing the new dish with some familiar favorite sides, but pasta doesn’t really call for a lot of sides.
This time I knew I needed a different plan. That back up plan occurred to me the day after I served my usual (did I mention we were in a rut?) spaghetti with red sauce. We had enough leftover for two or three servings, but not enough for a full meal for all four of us. I could have had the leftovers for my lunch over the next few days, but I was the one most frustrated with the rut. That’s when it occurred to me to serve pasta with red sauce as the back-up plan for the children with the new tuna pasta dish.
I called this dinner “pasta two ways.” Because the tuna recipe was said to be from Sicily, we also found that region on the map and had a mini showdown between it and Southern Italy, which for simplicity sake we called the home of red sauce. It was just the new presentation and added dramatic narrative I needed to get them to give it a try. We each got half a plate of the two types of pasta. They were encouraged to try several bites in order to vote on which they preferred. Both ended up liking the more familiar way best, but Max offered several specific suggestions on how to make the tuna dish more palatable to him. No beans and less tabasco were the tops on his list. Now I personally think these “adjustments” would ruin the dish, but maybe we could have another round of pasta three ways if I have some more leftovers one night.
Bonus: I used this approach again recently when introducing salmon cakes. I grilled salmon with a smear of honey and a spray or two or canola oil like I usually do for seven minutes at 375 on the George Foreman Grill. This time I also offered easy salmon cakes (canned salmon with about a cup of bread crumbs and dill and egg browned in a skillet and then baked at 450 in the oven for 20 minutes). This time the cakes were a big hit and easily won the vote. Of course the cakes are slightly more trouble than throwing the salmon fillets on the grill. I may regret messing with go-to quick fish dish, but it was a definite victory in my effort to break out of the rut.

Recipe: Note in the Sicilian Corkscrews with White Beans I cut the oil by at least half.

Recalls, My Struggle with Smugness and Wisdom

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ImageSo I’m not a big fan of karma. At least in theory, that’s what I tell myself. Just last week in Sunday School the middle school class I was helping with was discussing why God wants us to forgive our enemies and those we hate and how holding onto hate and waiting for the bad thing to come back to bite the so-called enemy or class bully or unreasonable boss is wrong. Makes perfect sense! Amen!

Fast forward two days. I see this story: about an expanded peanut butter recall. For the record, I’m definitely against people being sickened. Max was one of the minority of kids who outgrew his peanut and tree nut allergies. (See Our Journey) Peanut butter and jelly is his standard lunch. The first thing I did was double check to make sure our brand wasn’t part of this recall.

Still, it’s hard not to read the inevitable comments that will follow this story, the outrage that a seemingly wholesome food like peanut butter could hurt someone, and not feel a little smug. For parents of kids with food allergies that realization is second nature. Helping our kids avoid the so-called wholesome foods that are more like poison when you are allergic to them is an every-day, every-meal struggle. For a few minutes, when the parents of the non-allergic children are running to check their shelves to see if their jar of peanut butter is safe, I like to think that some people that maybe didn’t get it before are, however briefly, getting it.

That this lesson often goes right over many of those people’s heads probably should be the first clue that I’m on the wrong track in my thinking. I know many parents do totally get food allergies even without a personal experience with them. They are compassionate and helpful without needing any outside experience to see the light. In fact, I often feel blessed that Max and I are surrounded by so many of them. If I were wiser, I would be thankful for them instead of waiting for these rare “see now you know” gotcha-like moments of food recalls to make my point to the others. I’m working on being wiser!

Calling in the Cavalry (or Not)

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One of the silver linings to Max’s complicated medical history (see Our Journey) is that medical folks take him and us seriously when he complains. Since nothing is more frustrating than having a sick kid and not being able to get anybody to take you seriously, that’s a good thing.
It’s thankfully not that hard to get good emergency health care in the United States. Obviously anyone who is having trouble breathing gets right back in almost any emergency department in the country. With Max we have found even if he seems to be doing better by the time we get to the emergency room (like after using the epipens or giving benadryl for an allergic reaction) he still gets back for a quick evaluation by a doctor.
Similarly, I have found using the words headache or vomit in connection with the world shunt will automatically get Max triaged ahead of most of the waiting room at the emergency room. Max has always also gotten an almost immediate head ct and shunt series. Usually a grumpy neurosurgery resident also is immediately summoned.
While I am grateful for that level of caution, the flipside is that it can and does lead to a lot of interventions. I know the radiologists use the lowest amount of radiation possible. I realize the costs and benefits of any single test in these situations is almost always more benefit than cost. It does add up though. Sometimes it feels like noone is looking at the bigger picture. This point was brought home when Max was in first grade, and one of the MRIs they did to diagnosis his shunt failure showed an unrelated suspicious spot.
The spot was the size of a pinhead and both of his neurologists assured us it was most likely nothing, but there was an odd chance it was a mass. As a precaution, they wanted to do another scan nine months later to make sure the spot was not growing. It thankfully wasn’t but that was a lot of extra stress and expense. The unintended consequence was it made us more aware of how the more than dozen head CTs he had starting when he was an infant and had his first febrile seizure were at some level upping his cancer risk. I didn’t even let myself think about all the chest x-rays and shunt series. I did think of the collection of glow-in-the-dark stickers he had shoved in a drawer. They were the prize in the radiology department for sitting still during an x-ray. He had several, and he is not careful about keeping stickers or keeping them nice. The glowing visual there was just a little too striking.
Similarly, the steroids to prevent another allergic reaction while not a universal treatment usually made sense in the short term. I know I don’t sleep well when I think Max is at risk for a delayed reaction. If there’s any chance, even if it’s controversial in the medical literature, that the steroids reduce the chance of that, I’m all for it. When you factor in the number of times (last year it was twice) that he needs steroids to help get past an asthma flare plus the daily preventative inhaled steroids that starts to add up too. You have to pay more attention to the long list of side effects.
We haven’t even gotten to cost. We almost always meet our deductible for Max. We sometimes meet the out-of-pocket maximum but we try to avoid it and sometimes can if we can avoid the MRI machine. Considering how much attention is paid to it in the political arena, it is odd how uncomfortable some doctors get in practice about discussing the bill. I know it’s seemingly kind of uncouth or taboo to bring up, but it is a real factor sometimes. I don’t always think it should stay unspoken. Before Max’s last shunt revision a couple of years ago the surgeon who eventually performed the operation laid out several options one of which was transferring Max to LeBonheur in Memphis where he’d had his first surgery. The surgeon where we were in Arkansas said he wasn’t familiar with the type of valve in Max’s shunt and he thought we might be more comfortable with the more familiar other surgeon. I think all things being equal he was right and we would have been, but as I pointed out that would be a separate deductible and thousands more out of pocket for us. He and the resident practically flinched in unison at the mention this was playing in my decision making process. They then changed the topic back to something more medical before telling us to think on it and leaving.
I mention all this by way of background because all that previous experience can’t help but affect my attitude when Max turns up with new symptoms.
In fact, it was all swirling in the back of my head yesterday, when Max said his throat felt funny minutes after eating a chicken nugget. That his throat or tongue would feel funny or he’d have some hives after eating something is not that unusual of an experience around here. Dairy is hidden in a lot of unexpected places. Foods get cross contaminated even when we are careful. Those sorts of local reactions happen probably once or twice a month year round. A dose of benadryl usually clears it right up.
In this case, I dosed him up and went back to my lunch. Unlike other recent times though, this time he almost immediately began complaining his chest hurt. He was talking and not blue so I was a little alarmed but still figured it would probably die down in few minutes.
Then he started talking about needing to throw up, but he didn’t. Vomiting is a pretty typical symptom of an allergic reaction, although not usually one of his. Still, I went to get the epipens out just to have at the ready, although I was still pretty sure he hadn’t eaten anything new that would cause a serious reaction. The chicken nuggets were ones from the same bag he’d eaten with no problems the day before. He had no hives. He was breathing fine. His color was good. In other words, none of the other typical-to-him signs of an allergic reaction.
Now every allergist we have seen has said something along the lines of if you are wondering whether or not to use the epipen you just should go ahead. The rewards of catching a reaction before it begins to cascade by far outweigh any risks a dose of epinephrine carries. And yet using the epipens meant an automatic trip to the emergency room and probably several hours of observation and oral steroids not to mention having to buy new epipens (not cheap) and that was in the best case.
Adding to my relunctance, I also didn’t at the time have the family car. I have lovely neighbors but the idea of calling or knocking on doors was daunting especially with Max sitting right there continuing to complain. Just as I was pondering this, Max began to say that now his chest hurt worse. I asked him if he felt like he needed his epipens. He said he wasn’t sure. He still wasn’t having any obvious trouble breathing. No hives. He wasn’t turning blue or red. No feeling of impending doom. Yet he had the chest pain. His mouth was still kind of tingling, he said. He had almost thrown up, although threatening to do it on Claire if she didn’t move made me take that a little less seriously.
What we had here was the gray zone. I really was torn. If I had had the car, I probably would have waited. Since Jason had the car at work several miles away, I decided a middle step would be to call the EMT’s. I knew if I called the allergist, she would say go to the Emergency Department because she flat out told me that was her standard practice if someone called and asked if they should. I figured here I’d hold off on the epipens and let the EMT’s come help me decide if they thought he needed them.
We only live two blocks from a fire station. The truck was here before I’d given all the information. Max was still complaining but the firefighters agreed with me it didn’t seem to be all that allergy related. Chest pain without any other signs was odd. His lungs were clear. His blood pressure was fine.
When the ambulance crew arrived, they took his history, took more vitals (which were still fine) and offered to take him in, but by the time they had evaluated him and re-evaluated him, he was finally feeling better. I don’t know if it was everyone telling him he should feel better, or something (maybe a chunk of nugget) moved and he did. At any rate, I was feeling better about hanging back and avoiding a long ordeal at the emergency room. The ambulance crew assured me they understood and could be back here in two minutes again if the situation worsened.
It’s great to be able to call in the cavalry when you need it, but it’s even greater to be able to call them off too. Knowing the difference is still a real work in progress here, but we’re trying to learn with Max.

confessions of an NPR junkie and Guten Appetit!

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confessions of an NPR junkie and Guten Appetit!

I am an NPR junkie. I’ve always liked Car Talk and the occasional All Things Considered, but my addiction started in earnest when Max was a toddler and Claire was an infant. I soon discovered the only way to guarantee a shared napping period was a car ride. Gas prices were high then, but sometimes it was just necessary for my mental health.

Since this was before the era of iPhones, mobile apps and Facebook, the struggle became what to do once they were finally asleep. Removing them from the car was likely to wake one or both of them and would defeat the point of all those extra miles. Mostly I sat in the front seat wasting obscene amounts of gas to heat or air condition the back seat as the seasons dictated. Sometimes I read, but that was apt to put me to sleep too. That didn’t seem safe. It was at about that point that I discovered the local NPR station. Something about the voice of host Neal Conan soothed the sleeping babes, who thankfully seemed to go back to sleep if they woke during his broadcast. The topics were eclectic and interesting, and the show was the most welcome diversion from diapers, spit up and more diapers, which, when you have two under 2, is the majority of your world.

Fast forward a few years and I have discovered the power of the podcast. I can listen to the same NPR shows I love while I do the dishes or fold the laundry. It’s a good deal. I listen mostly to keep informed and be entertained during those chores. Every once in a while it yields some practical information. This was the case a few months ago when I was listening to the podcast of the radio show “Travel with Rick Steves.” Since our yearly travel budget is much closer to the three-figure than the five-figure range and since tents and yurts regularly figure into it, I have had to forgo yearly jaunts to London and Paris (France that is, I do plan to make it to Paris, Arkansas this year), and have settled for the next best thing: armchair travel to both of those places and more. Rick does this well. Occasionally he even gives a nod to the other listeners like me who are more frequent daydreamers than flyers.

On one show like this he spotlighted a mom from Oklahoma who had started a food blog called Global Table Adventure aimed at encouraging her family members to try new flavors and types of cuisine in their own dining room. Her reasons for beginning the blog/project included wanting to keep her cooking out of a rut and prevent her daughter from developing what she described as Picky Eater Syndrome as well as create more cultural awareness. “195 meals. 195 countries. 195 weeks.” It sounded brilliant.

I immediately thought I should try to replicate that at my house. It seemed even more important for a family living with food allergy. Exposing kids to new cuisines had to happen at home. Although we have some great ethnic restaurants, they are daunting to manage with Max. The language barrier often gets in the way. Plus, ethnic restaurants are often more reluctant to divulge secret ingredients or any ingredients. If I needed any more encouragement to replicate the project, our Kroger had just added a fairly comprehensive ethnic food aisle. I wouldn’t have to import pickled herring from Sweden. They had three brands. The food all has labels mostly in English or at the least translatable into English.

Still, thinking about it and picking a country getting organized and making it happen are two different tasks. I heard the show and first got inspired in late winter. I finally told myself when summer came we would make it a priority. The kids’ summer vacation is almost over now (12 days but who is counting?), but the start of the Olympics reminded me of this project.

Finally, we decided to go for it. I decided to begin with Germany because I’d been thinking about it since my pretzel post a few weeks back. We immediately encountered some hiccups. First, I knew I wanted to make a sauerbraten. Since I didn’t want to spend all day looking for an authentic recipe, I went to my favorite television food star, Alton Brown, who is as authentic as t.v. food stars get. To my surprise, I already had most of the ingredients: rump roast, bay leaves, even dairy-free ginger snaps. The only thing missing were the juniper berries. Having waited this long to get this project underway I figured what is one extra trip to the store. I scoured spice racks at one grocery store and then another, but finding juniper berries proved trickier than I expected. Eventually, I complained to Jason, who pointed out the obvious easy substitution: gin. Since Jason likes a gin and tonic now and then, he was more than happy to make an extra run to the liquor store. Finally, with a new bottle of gin, some German beer for good measure, and with all the ingredients on hand, I was ready to cook.

It was noon. Dinner was set to be at around 6. I was feeling good about my early start until I re-read the recipe. Although I have had sauerbraten before and knew that marinating was an important step, I somehow glossed over the fact that the recipe I found required three to four *days* of marinating instead of the usual three to four hours. Guess there was no need to preheat the oven after all, as we were not eating this meat tonight, but that wasn’t the only element I hadn’t thought through. If you are also wondering why Germany in the middle of July, then you are again one step ahead of me. Yes, German makes more sense for October, the month of most German food and beer festivals. I quickly discovered why it’s suited to October as I realized I would need to run the oven for four hours on the hottest day of the summer (107 degrees with a heat index of 105 — it was in fact a dryer heat than usual but still) to follow the directions. I decided to adapt the recipe to the crock pot instead.

And despite all the fits and starts and adjustments, it turned out terrific: sweet and sour just like sauerbraten should be. I fried up some latkes with the potato pancake mix I stumbled upon in the spice aisle while looking for the juniper berries. I warmed up an imported red cabbage slaw from the European subdivision of the international food section. We also had giant pretzels. I wanted to have at least one item on the plates I thought would generate excitement and be somewhat familiar for the kids.

When I researched German customs on a few food sites, I discovered my menu was more typical of an American restaurant trying to recreate German cooking than anything a self-respecting German would eat at home. I did feel a little bad about that. In a way, though, that’s what I was going for here. We played some German polka music and discussed some facts about the country, which I am sure only upped the kitsch factor. It wasn’t really a trip around the globe, but hopefully we did manage to open the window on the world a little wider. It was a long way from the days of car rides, diapers and drool.


Courage and Duh Moments

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Courage and Duh Moments

Every once in a while I have a “duh” moment that sticks with me. You know one of those times when you realize a concept that should be obvious to you all along unexpectedly becomes clear. The first example that comes to my mind was when I was 6 or 7 and I made the connection between the chicken on my dinner plate and the “cluck-cluck” kind at the farm. That was not pretty. I remember tears and my first brief stint as a vegetarian.

I was reminded of another one of those moments this week as I accompanied Max to his allergist appointment. The “duh” moment I was remembering occurred when Max was 4. He and I were in the outpatient surgery area at the children’s hospital in Memphis waiting for a nurse to come start his i.v. He hated i.v.s and had enough experience with them that he had requested numbing cream for his hand before she began. Humoring him, she had applied it and promised to return in 20 minutes by which point it should have had a chance to work its magic.

For the next 20 minutes, basically all Max had to think about was her return and that i.v. He kept saying he was scared. After a few attempts at distraction, I decided to change tactics. Maybe we could reason our way through this. I directly asked him: “But why are you scared?” Then I rattled off reasons why he should feel safe. I reminded him that he had had i.v.s before, and it had turned out fine. I re-explained the i.v. was so he could receive medicine that would allow him to be asleep for the lumbar puncture the surgeon was going to perform. I reminded him he preferred that to being awake and that he had been given a choice in that matter. This was his choice. I ended with pointing out how much he trusted the surgeon and that the whole procedure would be over before he knew it. It was possible he was going to receive a new toy from the hospital toy room for his trouble.

Max listened carefully and nodded his agreement with each of my points. Then he paused for a minute and said “I’m scared because I have to lie here in the bed and what I really want is to get up and run away.” Of course, right there is for me the definition of courage. I remember being blown away with the simplicity of his answer. I had never really thought about it that way before.

Now since the doctors, nurses and I were bigger than Max (at that point anyway, he is now more than 5 feet and might give some of us a run for our money), you could argue that he didn’t have a choice. He would have to expect that we would retrieve him and bring him back if he tried to delay. Still he was always a remarkably cooperative little patient.

As we were waiting for the skin allergy testing this week at the allergist office, I was reminded of that moment again. Last year the allergist just did a brief test of cow’s milk in her office. This year she wanted to re-test all the environmental triggers with the idea that he might start allergy shots (or immunotherapy as the permission forms I subsequently signed call it) in the next few months.

If you have never had skin allergy testing, they typically have you remove your shirt and prick you on the arm or back with a small amount of allergen. Then they leave the room and wait 15 to 20 minutes to see which spots develop wheals or small raised itchy spots. The results are based on how big and red the different spots are. In the meantime, they expect you to lie still while your back gets itchier and itchier. Max has had this procedures in some form every year. He is familiar with it. He wasn’t looking forward to it this year, but he had a silver lining. He was focused on those shots. The shots held the promise that he could get his cat allergy under control. If it was under control, that would pave the way for the return of our cat who has been living in exile at my parent’s house since Max’s asthma began to get progressively worse when he was 5.

With the kitty motivation in the front of his mind, he had been doing fine all through the check in. He had bantered with me and the nurse during the breathing tests they do regularly to check on the effectiveness of his asthma medication and was downright chipper during the first consultation with the doctor. When the nurse came back with the 48 vials she was about to stick on his back and asked him to remove his shirt, his demeanor changed and he audibly whimpered. I kept my tone light and asked, “Do you want to run away?” “Yes.” He didn’t though. He handed me his shirt and climbed up on the table. I thought to myself that is what courage is. Thank you for showing me Max.

P.S. I know mama brags can be kind of tiring. I don’t mean to imply that we have the market cornered on courage over here. This was a small moment, which I felt compelled to examine today, but I’m aware others have it both much worse and much better. If you want to see a much more incredible example of ongoing courage check out my friend Ashley’s blog at Wyatt must want to run away from the pain he lives with every day, but instead throughout his 10 years he’s chosen to get up and make the most of his days going to school, playing baseball and just living life to the fullest extent possible.

Insurance Rant

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At one point or other, I have complained to several of Max’s specialists about how difficult it is to get into see them. It is fascinating to me that when I have done so they have almost without exception assured me they understand and have coached me in backdoor ways to get through their own bureaucracy.

For Max’s allergist, who also manages his asthma, the backdoor she suggested was to call and ask for a same-day appointment to see her practice’s respiratory therapist. She assured me the respiratory therapist was almost always there. If the therapist had any concerns or heard any wheezing, he or she would pull in the allergist. Voila, we would have a way around a three-month wait, which is what you would be told if you called and asked for an appointment.

With Max’s neurosurgeon, the way to get the doctor to answer direct questions was to call after hours. If you called during the day, the nurse, not the surgeon, would attempt to answer the question when she had a few minutes — which may or may not be the same day you asked the question. After hours, the surgeon explained, he or whoever the on call surgeon was would come right to the phone. You could have a direct conversation about the issue. The surgeon also suggested scheduling routine appointments first thing in the morning. If we had questions for him while Max was admitted to the hospital, we could always have the nurses page him. “Neurosurgeons are busy,” he explained, a fact which I’m sure I wasn’t even disputing when he gave me more advice than I had even sought about getting more timely answers to our concerns.

With the pediatrician we used when we lived in what I like to describe as the sleepy lost-in-time town where we spent the kids’ preschool (also known as germ festival) years, the way was to have the direct line of the pediatrician’s favorite nurse. It turns out the town had significantly more patients than the two pediatric clinics could serve. Sometimes at odd hours during the day the front desk staff would just stop answering the phones. I cannot tell you how frustrating it is for a mom of a sick kid to know the medical staff was all there but to have no way to reach them. That was, it was frustrating until I vented and the pediatrician quite matter-of-factly gave me the direct number of his favorite nurse. She almost always answered her line.

And I could go on … ENTs, eye doctors, neurologists — we have had this issue many times. They all had ideas on how to beat their own systems. It is in this context that I have been watching the debate over universal health care.

No matter your politics about the recently enacted individual mandate one aspect of it that tends to get observers worked up is the idea that requiring insurance of everyone will flood the system and lead to rationing of care.

When the government proposed paying doctors to talk about end-of-life issues with their patients, the rhetoric became “death panels” and pulling the plug on Grandma. The whole notion of rationing never even got discussed at least not rationally. I would like to propose, though, that in many parts of the country and in many specialized areas rationing already exists.

Throughout the kids’ lives, Jason has worked primarily for state government. We have always had what many would consider good insurance. When we lived in Tennessee, it was an H.M.O. with a set co-pay (my preference). Where we are now in Arkansas, it is a P.P.O with a deductible and an 80-20 split after that.

While we theoretically have a choice of many doctors, the specialists Max needs are in high demand. To get in to see them typically involves direct referrals from pediatricians or other specialists and months-long waits. Since most of them are only available through children’s hospitals or university medical centers, patients on Medicaid are quite correctly given the same priority in scheduling as patients with private insurance. The only difference is private insurance users usually end up paying more for the service, which is quite proper in my view from an ethical model, but not exactly the usual economic model.

Usually if you are paying more for a service, you can expect some perks for it. By contrast, I find what we get are often more arbitrary rules than you find on lower-cost government insurance.

I know I am nitpicking here, but it irks me that our insurance company will pay for a wig for kids with cancer but not for kids with alopecia. Never mind that hair loss from cancer treatment is almost always temporary while hair loss from alopecia is often much more persistent. I find it completely illogical that they will pay for mental health services for Claire to talk with a psychologist about the social consequences of hair loss but they won’t cover visits with a dermatologist because they consider alopecia to be “cosmetic” as if it were a nose job even though it’s an autoimmune disorder.

While that is the most irritating and to me glaring inconsistency, I have found several other differences in coverage that make no sense. For instance, our thoughtful cost-conscious ophthalmologist always asks us if we have vision insurance before marking Max’s forms. It turns out the insurance company will pay for a vision check for him because he has a shunt and a complex neurological diagnosis that could affect his vision (if the ophthalmologist checks the correct box anyway) but since we don’t have vision insurance they wouldn’t pay to monitor his run-of-the-mill fairsightedness even though that is what prompted his current need for glasses. It seems to me being able to see well is important no matter the source of the problem.

Along the same lines, our previous insurance company would not pay for us to discuss Max’s diet with a nutritionist, but they would cover ambulance rides, replacement epipens and multiple emergency room visits if we hadn’t been able to get a handle on his food allergies on our own. Presumably they also would have paid for any diseases he developed as result of vitamin deficiencies, although to this point I haven’t wanted to test that theory.

Don’t get me wrong. I’m happy to have insurance and access to good care. When I get too frustrated, I close my eyes and picture mothers in third-world countries hiking hundreds of miles across desert lands carrying sick children on their backs just to get access to a make-shift clinic. I’m grateful for Jason’s job. I’m grateful that we have options. I’m grateful that if something happens our country provides a safety net of insurance for those who can’t afford to pay.

But it’s hard not to find a lot of these rules to be arbitrary. It’s hard not to resent how much we have to pay out of pocket relative to other families. Maybe I would think differently if I had healthier kids, but it is hard not to view free health care especially health care for kids as a really good idea if not a right. At the very least it seems silly to not have the discussion about rationing and if it can be managed.

Rather than have doctors spend time coaching patients and their loved ones about ways to get around the system, wouldn’t it make more sense to design a better system? We should identify and discuss issues like doctor shortages straight up, and we should have outlets where we can discuss what medical conditions are covered in public with a panel of medical experts interested in healing patients instead of behind closed doors at an insurance company with a panel of experts interested in maximizing share prices.

I’m not even sure we have to have individual mandates and universal coverage, but I do know I’m going to hang on to the direct line numbers of the nurses I have and leave room in my address book for a few more just in case. I guess when I am frustrated I’m going to keep asking the doctors for tips in gaming their own systems. They usually have good suggestions.

Taking It All In

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Taking It All In

I can count on one hand the times Max has complained about not being able to eat something because of his food allergies. It’s easy to take advantage of his good attitude and assume he is unaffected, but I was reminded again this week how he is taking it all in.
The concession stand at our neighborhood pool sells a number of items that are off limits to him. Claire, who is all about fairness, never asks for what he cannot have. For the most part, when I give them money, I encourage them to buy either a frozen slush or a frozen lemonade, both of which — while not that nutritious — are somewhat hydrating, or at least that is how I rationalize it in my mind.
One of their good friends loves soft pretzels. After a few shared snack times, Max asked about whether they were safe for him. It wasn’t a casual question tossed out before ordering or on the way home from the pool. It was a careful question asked at the end of the day after story time and before sleep. Nonetheless I gave him a pretty casual answer. We are the pool a lot. I have seen the lifeguards take the box from the freezer. I knew the brand was safe, but I also suspected they coated the pretzels with butter before serving them. Since Max isn’t the biggest fan of hard pretzels, I suggested to him that we try them at home first. If he liked them, then we could see about the possibility of getting one without the butter at the pool.
A couple of days later at snack time we brought out the box of pretzels. Max immediately noticed they were smaller than the ones at the pool. Claire and I weren’t sure (turns out they were), and we went about following the instructions to coat them with salt and bake them in the oven. They both liked them. The next day we had three remaining. This time we mixed up some cinnamon sugar (which is the other option at the pool), sprinkled and made another batch.
I asked them which they liked better. Claire immediately said “salt.” Max said he wasn’t sure. I teased him, “Who should I ask to find out then?” He said,”Well, at the pool they put the salt and cinnamon sugar on after they are heated.” He thought this could affect the taste. I asked him how he knew this about the pool ones. He said “I’ve watched.”
It turns out he knew a fair amount about all the menu items at the concession stand, including more than anyone should about the different rainbow-colored wrappers the ice cream treats come packaged in. Oh my gosh. I think it must be so hard to watch things like that and know it’s not safe for you to eat. Then again he’s never known anything different. He wasn’t complaining. He was just answering my question.
Still, you can be sure I decided he needed to try the pretzels at the pool. I told him we would pick a non-busy time and ask one of the lifeguards (preferably a friendly one he sort of knew) if they would make him one without the dairy. He and Claire have been taking refresher swimming lessons (although it’s mostly diving they are working on) for a few weeks. There is only one other kid enrolled in their group, and they often have three lifeguards teaching the lessons, which means they get a lot of personalized attention. Theirs is the last lesson on Saturday mornings before the pool opens. We decided first thing after the lesson, as the pool opens but the teacher lifeguards were still there, would be the time to try out the pretzels.
Jason usually takes them then. He is pretty good at negotiating these kind of things. We discussed the plan. I packed the epi pens and sent them on their way. It turns out the lifeguard was happy to make the pretzel sans butter. The cinnamon sugar stuck to the pretzel better than the salt and Max and Claire were both super happy. They have since had pretzels a couple of times. The lifeguards never seem to mind. Max handles the special ordering himself now. Just yesterday when Max had a friend over with him Claire asked if he minded if she got butter on hers, and he shrugged and said no. She liked it even better but said she wasn’t always going to order it that way.
All this pretzel talk reminded me of when I was a teenager learning to bake. The Betty Crocker cookbook I was using had the best recipe for soft pretzels. It would put the Super Pretzel Co. pretzels to shame. I couldn’t find that recipe for you, but I did find this one from Alton Brown that looks great. I am going to try making it (substituting dairy-free margarine for the butter and maybe adding in some whole wheat flour) with some sauerbraten next week.

No matter how good those pretzels turn out I have a feeling that for Max (and possibly Claire) it won’t beat the experience of getting to order one at the pool and eat it with friends.

not quite priceless

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Half-gallon of soy milk, $3, quart of soy ice cream, $7 (gulp), dairy-free double chocolate syrup, $3, cherries, $3, straws and cups (already on hand) brings the grand total to $16.

Enjoying it more than a regular dairy-ladden one. Priceless. Well sort of. $8 a shake is still a bit much. I’m thinking of experimenting with our own ice cream recipe to see if we can get the cost down a little, but these really are good.

Recipe courtesy of the Food Allergy Mama:

In Search of a Tougher Skin

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Food allergies are tough. There have been plenty of times I’ve felt bad for Max when he’s been left out of a special treat. Maybe I’m showing some gender bias here, since Claire has no food allergies it’s impossible to know for sure. In terms of emotional responses nothing has gotten me as worked up as an incident last year surrounding Claire’s alopecia.

Claire’s bald spot was getting bigger as it seems to do now every spring. She had just had a haircut and her hair was quite short. That was the only way the hairdresser felt she could continue to mask the spot and a second one that was developing. At the same time, her school collected about a zillion cereal boxes to donate to the needy. Her teacher selected her to attend a special breakfast/assembly with a live broadcast from a local weatherman to celebrate.

The celebrity weatherman was going around the room asking the students about their favorite ways to stay cool in the summer trying to get as many on air as possible. He got to her and mistook her for a boy. When she tried to correct him, he didn’t understand and did it a second time. A teacher on the sidelines explained. To be fair, he at first seemed embarrassed if not apologetic. While she had pink glasses and shoes, she had her school spirit shirt on which is gender neutral and I can get in a rush how it happened, although for the record I don’t think she looked/looks like a boy. I thought an “I’m sorry about that” might be in order, but he turned to the other adults and said “it’s happened before and I’m sure it will happen again.” It wasn’t what I would have chosen for her television debut. I initially thought it was kind of cool how she at least stood up for herself and didn’t let it ruin her day. (I checked on her at lunch and she was irked at him but fine.)

Then the next day I saw a link to the weatherman’s Facebook page where one of his fans was telling him she could sure see where he was confused and maybe now the parents would let that little girl’s hair grow out. It was followed by some ha ha has. Grrrr! I called Jason to see if I was overreacting. In the meantime, the weatherman bantered on with her about how he felt bad but, man, it really was short hair. OK, I’d had enough.

I wrote a private note to the poster explaining and asking her to remove her comments, which after she accused me of trying to make her feel bad (which, OK, yes, I was) she agreed to do. In the meantime, Jason wrote the weatherman who was on vacation at that point but almost immediately gave a seemingly heartfelt apology and removed the comments, blocked the original poster and offered to try to make it up to Claire if we could think of anything he could do.

So maybe that was a fight that didn’t need to be fought, but it sure did make me feel better. I really did appreciate the apology. With a year’s perspective, I realize we didn’t really change much. Maybe we created some new awareness about alopecia for two people, but I think the mama-bear way I approached it made one so defensive I’m not sure she even believed me.

It’s interesting to me that I was pretty philosophical about the incident until the fan questioned our parenting, saying we should have let her hair grow longer. It was the questioning that set me over the edge. I think with Claire’s alopecia even more than Max’s allergies I don’t always know what the right course of action is. This summer at the pool it is obvious her hair is missing. She doesn’t want to wear a swim cap. Should we encourage her to do that or wait and risk some teasing? I don’t know. At school that year, I had gotten her special permission to wear a hat, but she didn’t want to wear one. The hat was attracting more attention than the bald spot. I didn’t push. There’s no guidebook, and so when people judge without considering what we’re up against it stings more. It stirs up all my doubts about whether we’re making the right decisions. The kids, however, obviously have a pretty tough skin about this sort of thing. Maybe I need to be more like them.