Waivering

{I started writing this on Sunday morning, before I wrote my last post. My son still isn’t doing well–I think he has croup–but we haven’t decided to high tail it home yet. We currently have one night booked at a Motel 6 in LA and we’ll reassess tomorrow when we see how everyone feels. My guess is we’ll be heading home Wednesday morning instead of Friday. Anyway, this post is about a totally different topic, something else (besides my sick son) that has been keeping me up at night.}

I’m sitting in the car, typing this on my phone. My son is sleeping in his seat. It’s hours before his nap but he’s clearly not feeling well and I can hear him trying to breath through his congested nose (so sad sounding) so I’m letting him sleep even though it means he might not nap later on. Honestly I thought he’d be up by now. Maybe I should wake him up. But he might not nap later even if I wake him up now… Ah! I hate when I don’t know what to do, when I can’t see into the future so I need to make a choice based on what I know, and what past experience suggests might happen later. (Although that never seems to be what actually happens later, does it?) Man, sometimes it seems we spend the majority of this parenting gig making decisions based on incomplete information, hoping we’re doing what’s best for our children. 

Did I mention that I hate not knowing what to choose?

That, is actually, what this whole post is about. 

I’m stressing out about the diet stuff with my kids. I go back and forth, constantly wavering. My thinking goes something like this: I’ll do the no-additives diet, that is the least restrictive one, it will just require I plan better and spend more money. But how will I explain it to the grandparents? What if they think it’s a hoax? What if they don’t even try to follow it? What if they do but mess up? What if she eats other food at school? How can I even manage this, the supposedly simple one? Maybe I should do GFCF too? Maybe start it later? But that will be even harder. That will be impossible. And what about supplements. But they cost so much. All of this will cost so much.  But what if it makes the difference? But what if it doesn’t? 

It all costs so much, in time, in money, in inconvenience. I don’t want to be “that family,” the one who has to bring their own food to everything because their kids can’t eat what everyone else can. Already, traveling while trying to keep my son on goat’s milk has been frustrating. I’ve had to be “that mom,”–driving three times farther than the nearest grocery to get the weird stuff–and I don’t even know if it’s helping. 

I just don’t know what to do. I don’t know what the right choice is. My husband thinks the no-additives diet is dubious. Is it scientifically proven? Well, no, you can’t have double blind studies that determine the efficacy of these kinds of diets. Obviously the parents that are feeding their kids certain foods know which group they are in, and there is no way to ensure that the elimination diet group actually eliminates the restricted foods. It’s really hard to test in the way other things are tested. 

The no-additives diet (and the GFCF diet) are not specifically associated with SPD, but there has been (anecdotal–as far as “science” is concerned) evidence that the no-additives diet benefits some kids with behavioral issues and the GFCF diet helps some kids with autism (which is closely associated with SPD) and ADHD (which is also closely associated with SPD because the diagnosis criteria is almost identical in some cases (like my daughter’s).

Some kids. Closely associated. The reasoning seems so tenuous. If my daughter were “more” of what is concerning–if her behavior issues were more disruptive or her (suspected, though it may be her SPD, or a combination of both) ADHD were more debilitating, I think I would know what to do. As it is, I’m not sure. Things have been a bit better since we started the daily dose of Claritin. Maybe I should wait until school starts and see how things go. 

I just don’t know what to do, and I HATE not knowing what to do. I hate not knowing what course to take. Maybe it will help. Maybe it won’t. Maybe I won’t recognize either way (this is probably what I’m most afraid of). All I know is we, as a family, are not happy. We want something to change, and I don’t know how else to make that change (maybe) happen. 

So many maybes. So many tenuous connections. So little support. I just sit awake at night, unsure what to do. I read articles and books–in the end all anecdotal evidence, promises of what might happen, but assurances of nothing–and I build my house of cards. If I choose to go down the road of pseudo-recognized elimination diets, how will I keep such a flimsy structure standing when the winds of ignorance, derision, and criticism blow so forefully. Do I want to live in that precariously built house of cards? Constantly rebuilding what is broken?Can I manage being that family?

Why does all of this have to be so hard? I just wish someone would tell me what to do. 

How do you make hard decisions with no clear, assured outcomes? 

28 Comments

  1. I cannot help you answer these questions, I can however tell you, being ‘that family’ isn’t so bad. On the real. Not only can my daughter not eat dairy, we also have the added ‘her crazy won’t let her eat that’. No worries, her dad and uncle’s crazy won’t let them eat a bunch of stuff too. They seem to be fine.

    Like all changes in life, it sucks ass for awhile, and then you get used to it. And then funny things happen, like your biggest non believer starts getting super sick from eating dairy. And all of sudden all of your experience in cooking non dairy food benefits them too. WIN! Haha!!

    Then let’s throw in I eat SUPERFUCKINGHEALTHY (with the exception of vodka and peanut butter cups) and we pretty much just bring a cooler everywhere we go. It’s awesome. I get hungry a lot. I really appreciate not having to worry about food. I just bring it. I do my research when we’re going out for the day. I have a list in my purse of all the fast food places that has food G can and will eat in an emergency.

    You just get used to it.

    1. I sent you an email (to the address you list when you comment) asking about how you choose to move your daughter to goat’s milk. Did she test positive for a cow’s milk sensitivity (my son just tested negative but I know that doesn’t rule out a cow’s milk sensitivity). Also how long did it take for you to see a noticeable difference in her eczema? I want my son’s to be better so bad, just just rips his ankles to a bloody pulp with the scratching. I want those patches to go the fuck away already! He’s had them for years.

  2. Life really would be simpler if we really did know right answers. But I think that is never the situation when we need to make decisions. All we can do is our best and then make another decision later. SO hard. Never easier.
    No advice. The food path about possible allergens is not one I walked, but I had friends who did. I can say I never judged them for trying so I can encourage you to put down the worries about ‘being that family’. And if you provide information and the food to the grands they will do their best, at least most grands would do that, because love and wanting the best for their grandchildren’s lives.
    Sympathy. Understanding. Support. And hopes that others with more direct knowledge of this sort of thing will respond.

  3. I am so sorry these choices are hard & you feel like you are making these decisions feeling in the dark & unsupported. I don’t want to sound flip about these decisions but does it matter if a different diet doesn’t have the impact you wanted? Is anything lost but a bit of time & money (& not huge amounts of either, in the context of the years of your life)? Can you just cross it off and try something else? As for other people: no joke, f* them. You know better than they do what your kids might need. I play Taylor Swift’s shake it off every morning on the way to work to remind me of that.

    1. I think dietary change is especially overwhelming for me because I already struggle with feeding my kids–not just because they are stubbornly selective eaters, but because preparing food is not one of my strengths as a person or mother. The idea of making a part of my life that is already more stressful than it should be, even more stressful, is just daunting. I know it shouldn’t be that big a deal to check and recheck lists to make sure everything I’m feeding my daughter is additive-free might not seem like a big deal for a lot of people but doing it for even eight weeks feels really overwhelming for me, especially when I don’t have the buy in and support of the other people that feed her

      1. I think most of the TJ’s pre-prepared stuff is free of the worst additives (unless there’s a problem with yeast extract, and most of their stuff doesn’t have even that, though I was recently unpleasantly surprised by one of their lasagnas). If I were pressed for time and didn’t want to live on cheese and crackers and frozen peas (which is DC1’s favorite dinner, no need to defrost the peas), that’s where I would start.

        I wouldn’t start trying to combine GF with low-carb or even with additive-free. GF and low-carb is a pain in the rear because most GF stuff uses potato or corn (though we also ate a lot of quinoa and brown rice), and they’ve started adding harmful additives to the trendy prepared GF stuff. GF and additive free isn’t bad when you’re doing a lot of cooking, but it is harder when you’re relying on pre-prepared stuff.

  4. 1. I’m that mom somewhat bc we are vegan for moral reasons. We bring vegan cupcakes to birthday parties. No big. There’s a gf kid in the same circles whose mom brings gf stuff to parties.

    2. As a former scientist….eee, I am dubious. But there is this–a few years old but it’s a peer reviewed journal. I would avoid crunchy blogs and stick to peer reviewed science articles for info. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3200397/

    1. But do you have to make the gf cupcakes that you bring? Because that sounds awful. I hate baking. Ugh. It just all sounds like so much more work.

      Thanks for the link. I’ll definitely give it a read.

  5. No advice but just wanted to share my personal experience since you brought this topic up again (I’d just given birth when you posted your other posts and didn’t read them until a few weeks later)…

    Growing up I had terrible allergies – took allergy medicine every day of my life. I was also exhausted all of the time. My mom called me a hypochondriac. In my 20’s I began wondering if I had food allergies and was tested; all came back negative. In my 30’s a doctor finally questioned why my CRP (a blood test the measures inflammation in your body) was chronically high, like 9x what normal was, and she recommended I have food sensitivity testing done. I think you questioned whether or not this testing exists – it does; look up ALCAT testing (I didn’t do that one but something very similar). I reacted to 40+ things, three of them severely – gluten, wheat, and green peas. I eliminated ALL of them from my diet (as best I could) and within just a few weeks the results were obvious. My allergies disappeared, my exhaustion abated, and I quit having headaches (which I hadn’t really even realized prior to that I was having so many). When we retested my CRP about three months later, it was almost down to normal.

    The testing suggests you avoid foods to which you have mild sensitivities for three months, moderate for six, and severe for nine. I extended beyond those recommendations for peace of mind but, eventually, I did reincorporate all foods back into my diet. I have not had my CRP retested recently, BUT I have not taken any allergy medicine in years, consider my fatigue to be in the normal range, and almost never have headaches. Thus, for me, the proof was “in the pudding” so to speak… (End note: I never had the “typical” symptoms you describe your daughter as lacking either, e.g., tummy issues. Who knows how many others have atypical presentations like mine?)

    1. Thank you so much for sharing your personal experience with allergies and food sensitives.

      I recently got my son and daughter tested for food sensitives (the IgE test). They all came up negative, for both. I’m not sure where that leaves us. I’ve heard that they can be negative and you still have issues. I’ll look into the ALCAT testing you mentioned. I’m assuming that is different than what I already did, since you said you were tested and they came up negative but then you did something else and it was positive for a bunch of stuff. It would definitely help to have some kind of evidence that they are reacting to something. It would make it so much easier to just pick a diet and go with it.

  6. Re: food stuff:
    For various reasons we’ve done little food avoidance diets and bigger ones. The little ones are pretty easy, especially since it usually isn’t a big deal if, say, the kids get HFCS or food additives outside at parties, or even if I do. (Exception: I still get headaches from msg and yeast extract, and sometimes they hide yeast extract in seemingly “healthy” foods even at WF and TJ’s. Stupid yeast extract.)

    There was a little bit of a learning curve when we cut out HFCS (10 years ago!), but after we figured out what to buy it was a lot easier. https://nicoleandmaggie.wordpress.com/2011/04/12/ingredients-whole-foods/ If you cut out HFCS, you’re pretty much automatically cutting out the nastier food-dyes at the same time because almost all stuff with the bad food dyes also add HFCS. Again, this is something we don’t monitor when the kids are out and about because it’s not like a wheat allergy where the not eating it has immediate obvious bad outcomes (though I did monitor it while pregnant and ttc because of the PCOS). I think all of TJ’s prepared foods are HFCS and bad red dye free (though I’m not 100% sure).

    I can’t say that DC2’s (and my) inability to eat wheat was much fun, though we did get used to it (and GF items were thankfully easy to find). I am so glad that neither of us is allergic to it anymore.

    1. Thanks for sharing your experiences. I really appreciate hearing how other families have handled elimination diets, both large and small.

  7. What’s the harm in trying? It may make your life more difficult for a few weeks but if you see results then it may push you to continue. Make sure that your husband stays involved and helps- he can food prep too. If it doesn’t work then you at least tried.

    That all being said, I’m sure that it is a lot easier to say to do it then it actually is in practice.

    1. I guess there is no harm in trying, except all the work involved. I think if my husband were on board I would feel better about giving it a try, but without him I have to field all the questions from in-laws who think I’m making my kids’ life unnecessarily difficult. I think I’d be less stressed about trying if I felt like I had support. Without being able to point to concrete reasons why we’re doing it, it’s hard to explain it to others.

  8. I’m no help on the food issues. I did go GF when I was pregnant (and prior to getting pregnant), and largely managed that by eating stuff that *is* GF, like fruit, veggies, and meat — without seasoning that might have G in it. I found this pretty easy, and cheap. However, that was in a context where I was making decisions for myself, not a child, and where I’d, you know, eat that stuff, so if your DD won’t or you cannot convince others not to provide her stuff you want to try avoiding, well, I’ve got nothing.

    As for decisions, I’ve got 3 (4?) things. Yes, I’m pretty sure we’re (all) spending the majority of this life (not just the parenting gig part) making decisions based on incomplete information, hoping we’re doing what’s best. I don’t think there’s any way around that. As for how I cope with this stuff, I’ll commit to doing things for a short amount of time (I think I started the GF diet with the thought I’d try it for 2 weeks. I stuck with it for a year, which was the duration of my pregnancy, plus some pre-pregnancy time). I’ll flip a coin. I am not kidding — if I feel really unhappy for the 24 hours that follow the coin flip, I know it made the wrong choice. And I use the question, “If I try this and it doesn’t work, will I regret having tried it?” That one has worked really well for me.

    Good luck, whatever you decide.

    1. I was GFCF, no processed foods, no sugar, no alcohol, no caffeine while I was TTC (for over a year) and while it was hard, I managed. So I know it can do it. But I also know I was SO HAPPY to be done with it. The idea of doing it again, with my picky kid, is different.

      I do love those questions. I think they’ll help me figure out which path to take.

  9. It sounds like you are feeling a ton of stress right now. I don’t think it would be a bad idea to focus all of your energy on the big transition that you have in front of you. There will be time to work on dietary changes.

    About those changes. As you say, nutrition is extremely difficult to approach scientifically, which means that we actually understand very little. Still, diet IS important and I think it’s worthwhile for all of us to work to find the best diet for our bodies.

    When/If you feel ready to take this on, you could do so gradually. You might start a notebook with concrete ideas of things to try for breakfast/packed lunches/snacks/dinner and then test them one at a time to see how they are received. Eventually, you may then be able to put together an entire diet of the successes and actually evaluate whether it is or isn’t helpful.

    1. You’re right that we’re about to have A LOT going on and I’m stressed about all of it. Maybe it would be best to wait and start dietary changes after we feel comfortable in our new routines.

  10. While I can’t comment specifically on the diet specifically, I think we can all relate to the struggle of having to make a decision without all the information and wanting to know the future to make sure we make the right choice, whether it’s short-term or long term. I’m still waiting for a future fairy to show up to help me during those times so I can rest easier with the decisions I have to make in those moments.

    As for the diet, I think you may need to apply the same reasoning that you mentioned in the nap. You’ve observed your child and learned that he’s not feeling well, he needs sleep now, even though that may change his sleep needs later. You are doing this because he is sick, things are not usual right now. If we apply that same thing to your daughter, things are not how you want them now, so a change is needed. What is it going to hurt to try a diet for, say, 3 months, to see if it improves things? It will be a struggle, changing a habit or routine is, but I think I’d rather grasp at the straws, test it out and see that it failed, rather than do nothing and wonder if it might have helped.

  11. My life is night and day different now that I don’t eat stuff I react badly to and I will email you about my experience. I’m terrified to try to change my kid’s limited diet but we may try something similar in the next quarter or six months. I did my diet challenge down to a very basic elimination diet and added in one or two things a month afterward, but I think you could try something smaller. No harm in trying to see if it works! The way I phrased it at first was “I’m trying to see if foods are a problem, keep supporting me in the experiment, it will end on [certain date].” Then I made the permanent change, got a cooler for going out and the short list of safe restaurants, and here I am.

    1. Thanks for giving me a good line to use. I don’t know what this is all so difficult for me. I think with food stuff I have significant confidence issues.

  12. This is hard to decide because it does mean a huge shift in shopping and meal planning. Making those changes is always a pain and stressful. I just want to point out that at the beginning it doesn’t have to be an all or nothing mindset. Maybe you change what you’re doing at home and see if those changes are helping? Can they work that way where you see some benefit just by reducing some of the suspected foods/additives that aren’t tolerated?

    1. It seems that if you don’t eliminate things completely you don’t see much difference. I wish it were the case that taking some out would show and improvement so you’d know to take it all out, but from what I read, that isn’t the case. Such a bummer.

      1. I think that really depends on what the problem is and what the food is. For example, the only problem when I eat msg is a terrible but temporary headache. When I was allergic to wheat while pregnant, I would throw up and then feel nauseated for up to a day later, depending on how much wheat I’d accidentally ingested. My daughter, otoh, would get hives right away that would then go away and as she got older, she’d have delayed eczema reactions (we think that’s what was going on) that would last a while. Accidentally ingesting gluten has different effects for people who are celiac as for people who have intolerances as for people who have allergies. Celiac you can’t have any, allergies and intolerances it can depend on how bad your reaction is and how much you eat and why you have the intolerance. Avoiding refined carbs doesn’t have to be all or nothing with insulin problems (though doing no refined carbs and no artificial sweetners makes it easier to stop the cravings after the initial learning curve).

        What people have said about additives and behaviors on mothering forums I used to be on sounded a lot more like my experiences with msg or refined carbs than anything else… actually a lot like my experiences with refined carbs, where the behavior problems (yes, I get irritable and unpleasant to be around after a sugar crash) would be noticeable sometime after ingestion and wouldn’t last forever.

        I’m not a doctor, but I also know that medical science doesn’t have this “gut” thing figured out and it seems to be very complicated. There’s a lot of new research being done in the field as scientists start taking it seriously, but nowhere near enough to have any definitive answers. I seriously doubt that it’s the case that eating a red lollypop at a birthday party will undo a week of no additives– there may be an increase in bad behavior for the day, but not for a week.

        1. Similar observation here, when people cut the colors or dyes (autocorrected to deities, which made me smile), they usually cut refined carbs too (and msg). My kid hasn’t had allergy testing but she gets sick for about 48 hours (up to a week once) if exposed to her “allergens” in a big enough dose. I think she may share my allergies someday but for now we are just cutting things out as they become problematic so she eats something. So I think a few weeks would be plenty to see if you notice a change and close adherence if not perfection would likely help give you answers. (These are my personal views, not my practice area, yadda yadda consult a real doc or dietician for health and diet advice disclaimer)

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