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Understanding Food Allergies

I tend to read articles about food allergies, because my oldest has five severe food allergies that we have been living with since she was diagnosed at 13-months old. (At one point, she had seven. She outgrew her allergies to egg and sunflower. Thank you, God!)

If you have been reading this blog, you am not a huge fan of the uniformed opinions of friends or strangers who tell me, directly or indirectly, that if I had just fed SC1 peanuts earlier in her life, she would not have a life-threatening allergy to peanuts.

Please note what the above-linked article says: “…the suggested clinical guidelines on preventing peanut allergy, which is the leading cause of fatal anaphylaxis from a food allergy, now include introducing peanut-containing foods earlier than we used to give them; children with severe eczema or egg allergy need to be evaluated first for peanut allergy, and depending on the results, the doctor may recommend introducing peanut-containing foods at 4 to 6 months.” (emphasis mine).

SC1 had both severe eczema and egg allergy. In fact, it was her allergic reactions to eggs and hummus, before the age of one, that prompted allergy testing. Also, let the record show: SC1 started getting solid foods at four months. Guess what her first solid food was? Peas. Guess what SC1 had an almost anaphylatic reaction to at 15 months? Peas.

Another point about uniformed opinions: People love to tell me that SC1 will outgrow her peanut allergy, or point out that there are ways to help her outgrow them. There are treatments to help children with severe allergies. I invite you to read that full article in its entirety (it is very long), and then tell me if you would be super eager to put your child’s life at risk doing the treatment. As I have told friends and family: (1) SC1 would need to want the treatment and be 100% on board with it; (2) I have already asked her doctor about it, and he does not recommend it for her, because of her multiple allergies to peanuts, tree nuts and peas. Peas and peanuts are related: They are both legumes. There is too much risk involved in trying to just treat for peanuts. We’d have to tackle all three at once. And there is too much risk involved in that.

You will note that the families that go for these treatments are the ones with even worse allergies than my daughter’s: They suffer the kind of severity where they cannot go into a room with the allergen or get it on their skin. Such a severe disorder (if you will pardon the term) makes it next to impossible to lead a normal life. They also tend to be allergic to milk and wheat, which, IMHO, are worse to suffer than nut allergies because of the ubiquity of the allergens. (The worst allergy that SC1 suffers is sesame. Sesame is in everything. It’s not as bad as sunflower, which is also in everything. But sesame is a food that other foods are cooked with and in. Baked goods are not safe. Asian food is not safe. A lot of Mediterranean foods are not safe. Candy is not safe. You have to be super vigilant, and you cannot rely on allergy warnings on food labels, because it is not one of the allergens that required bold warnings on packaging. I invite you to just pretend for a day that you have a sesame allergy and see how it affects your life.) But we are fortunate: SC1 can still lead a normal life. She can fly on planes. She can do things without worrying about skin contact with her allergens. She just has to be super careful not to ingest anything that is “poisonous” to her.

Anyway, I know this blog post does not reach many. But if you know anyone with food allergies, it is important to understand that their allergies, like any medical condition, are not always preventable. Thank you for reading this post and increasing your own awareness and understanding.

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The Elusive High-Achieving Working Mom: Unwilling to Sacrifice For Her Kids….Really?

Hey Econ-Mom (EM), I found one! A high-achieving working mom! (HAWM.)

The following are my favorite quotes from the linked article above:

“When you have multiple passions, a perfect balance becomes an unachievable ideal.” –> EM, you and I have already said this. So, even HAWMs agree with us.

“My life could easily descend into chaos; I use my routine to establish some semblance of order. That routine begins at 4:30 every morning with a workout while my house is still quiet.” –> Yep. I have noticed, us working moms are often super-early birds. I wish I always used my time to workout, but it’s pretty rare. I usually drink coffee and read articles for an hour. I am so grateful, however, that the days my children woke up at the same time that I did are over. The very thought of a child coming down the stairs right now and disturbing my quiet time sends me into fits of PTSD from the marathon that was their younger years. (I am only slightly exaggerating.)

“2. Compartmentalize effectively.” –> This is why I actually prefer working in the office; although, I LOVE and am so grateful for the days I don’t have to commute. It’s a mixed bag. But I do compartmentalize much more effectively when I have office days. Today is an office day, and I will need to get moving very soon. (Sigh.)

“To be clear, this is a goal; I’m not perfect and this is not every day. There are days when my professional goals require me to trade time at home for more time at work and vice versa.” –> Yep. I can relate to this. It’s also nice to hear it happens to HAWMs.

“My imperfect balance would never work if I was afraid to ask for help. Being a working mother has taught me that it’s not only acceptable to ask for support from colleagues, friends, and family – it’s imperative.” –> Yep, again. Though I still don’t like to. Fortunately, I have found other moms who also are not afraid to ask for help. So, we help each other out. I am very, very grateful for them.

“I realize that a large part of my imperfect balance is good fortune. I’m fortunate to work at a company that cares about my professional and personal aspirations and encourages the unique path I’ve chosen. I’m fortunate to have colleagues who support me beyond the call of duty. And I’m lucky to have a husband, friends, and family who are just as dedicated to my family as I am.” –> I am so glad she said this, or I might have wanted to reach through the computer and slap her, as EM once quipped.

To transition poorly: Today is the 10th anniversary of the day I went to the hospital for a tri-weekly appointment — they were monitoring me that closely — and instead of being sent home, was induced. SC1 was not born today. Or tomorrow. She was born on Leap Day. How’s that for an almost 48-hour labor story? It wasn’t as bad as you would imagine. The induction didn’t work, and I barely had contractions. But it did begin a chapter of my life I like to call: “Well, That’s Not Quite What I Expected.”

I have written about this before, but the first five years of SC1’s life were very hard for me. She didn’t have any severe, debilitating disabilities. But she had disabilities in the sense that we could not lead a “normal” life. Between food allergies, literally constant illness that devolved quickly into bad asthma, including one hospitalization, severe speech impediments and delays, coupled with tri-weekly speech therapy (which also applied to her younger sister), and sensory processing issues: Every day was like a battlefield for my sanity.

There is zero way of knowing how SC1 would have fared if I had been a “C-suite” mother. But I strongly believe she would not be the extremely articulate and well-adjusted almost 10-year old she is today, if I had not been willing to sacrifice for her. And here is where I absolutely cannot relate to the featured HAWM in today’s blog post, who began her essay with this paragraph:

“I’m the head of marketing for a 950-person consulting firm. I’m also the mother of a 4-year-old daughter and 2-year-old son. Both roles are demanding, challenging, and enormously fulfilling. I’m committed to each of them. And I’m not willing to sacrifice one for the sake of the other.” (emphasis added).

Really? Are you sure? You wouldn’t sacrifice your job for the sake of your children?

I find that hard to believe. And obviously, you have also had the good fortune (she has admitted she has had it, so I will not be too hard on her) of not having to. If you had a child with special needs, you would have had to. I have seen it in my own life. I have seen it in friends’ lives. I know EM has experienced it in her own life.

I am not trying to elevate or applaud myself for accomplishing what I have with my child(ren). I am just once again pointing out that sometimes, “having it all” or “doing it all” is JUST. NOT. POSSIBLE. And it doesn’t have anything to do with a woman’s ability to wake up at 4:30am; or compartmentalize well; or have a great support network. Sometimes, circumstances are what they are that make working just downright impossible. It could be because of the woman’s own health issues. Or her kids’ health or developmental issues. Or a combination thereof. If you yourself have never had to deal with it, just be grateful, and don’t for a second think that it’s just an excuse. It’s not. I’ve seen it. I’ve experienced it.

And I am also grateful for my good fortune that – today – I can work to help support my family. Even though, there are also days, I wish I didn’t have to.

Econ-mom: UGH, that article.  I can’t decide if I find it annoying, because I’m jealous (since, as Law-Mom rightly points out this woman clearly has easy children) or because the article is just supremely unhelpful.  Allow me to paraphrase that entire article:

“I have a high-power career and two young children. How do I do it all? The same way men have been doing it all for decades. I don’t do very much parenting.”

Sorry if that was too snarky… I’m not trying to criticize her parenting.  (And really, who even knows how much parenting she and her husband do, given how vague that article is).  I’m sure her children are doing fine, and, if at some point they are not thriving for whatever reason, she and her husband will re-evaluate their lives and, likely, at least one of them would scale back their careers.  (By the way that is essentially what happened to Anne-Marie Slaughter which is probably why I like her so much. Read her book it’s so good.)

Honestly, I would not be surprised if this woman has never considered what her life would be like if she had a child with a disability. Who does though? I didn’t, until I was forced to. That’s part of what it means to live in an ableist society.  Disability is something to be hidden away and not discussed. That way, when you find out you are joining the Disability Moms Club your first reaction is likely fear, because you have no role models, no point of reference.  And then you get to hear from women whose children have never had so much as a runny nose that it’s all possible if you just “lean in” more!

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Bummed Out About Food Allergies

I saw a post on a Facebook mom’s group about the new Peter Rabbit movie. Not sure which depressed me more: The news about the movie or the comments in the comment thread.

Some moms were commenting: “It’s just a movie.” “Lots of movies are inappropriate.” “It’s a teachable moment!”

My response to that:

I don’t think the problem is that a food-allergy bullying scene is “inappropriate” per se, but that it plays into misinformation and misconceptions about food allergies. Most people know that a gun does, in fact, kill. (Some moms were comparing food-allergy bullying violence to gun violence.**) But most people seem to also think that all you need is an epipen handy and all your food allergy woes are over, which is, sadly, not true. Sure, it may be a “teachable moment,” but what is there to teach, if the parents themselves have no knowledge or real understanding of food allergies? It’s great that we (this particular mom’s group) live in a well-educated community that teaches children not to bully and about the seriousness of food allergies. I’m more concerned about the communities where food allergies are not understood and misinformation continues to spread.

In addition, this what I’ve been hearing a lot lately when people hear my child has food allergies:

“Oh, that’s why I started giving my kids peanuts right away in the first year of their life! I didn’t want to take any risks, so I just made sure they had peanuts right away!”

Of course, 10 years ago it was the opposite conversation:

“Oh, that’s why I waited til my kids were like 5 before I gave them peanuts!”

The unspoken conclusion of everyone’s self-congratulatory professions, of course, is: “And that’s why my kid doesn’t have allergies!”

Okay, a few things about this:

  1. Horse manure.
  2. You don’t get to claim any credit for the fact your kid does not have allergies, except that your genes paired up nicely with your mate’s.
  3. Whether your kid has allergies or not has nothing to do with what you did or did not eat when you were pregnant or what you did or did not feed her in her first year of life. It just doesn’t, okay? If it was that simple, the food allergy epidemic would already by solved.

People keep latching on to these silly ideas about what does or does not cause allergies, and it’s almost all myth, based on snippets of a larger dialogue. I know a mom whose kid has the exact same allergies as my kid, and guess what? I ate peanut butter when I was pregnant (because meat made me physically ill) and she did not. Another mom: Ate peanuts with her non-food allergic kid; didn’t with the one who is allergic. There is no rhyme or reason to it. And as far as what you feed them in their first year of life? We discovered all of SC1’s allergies before she was a year old, so it wasn’t because we waited too long to introduce them to her diet. If a child is going to be allergic, the child is going to be allergic. Period. End of story. You can feed peanuts all you want in the first year of life and pat yourself on the back for being smarter than everyone else. But guess what? You just got lucky!

[I should mention that I was at a lawyer conference where the speaker ACTUALLY said that that kids were getting food allergies because “helicopter parents are waiting til their kids are 10 to feed them peanuts.” Yes, someone ACTUALLY said this!]

Ultimately, I’m griping, because it’s just such an irritating conversation to have with someone. The implication is always: “You were/are a bad parent. If you had done something different, your kid would not have food allergies.”

Gee….thanks.

This is similar to the guilt people make you feel for having C-sections. Everyone assumes that if you just pushed a little harder, tried a little longer, that you could have given birth naturally. (Also, the term “naturally” is so loaded.) No one ever considers situations, like mine, where there was no other choice. It wasn’t a choice. It was literally the only way out. And it was through no fault of my own. There wasn’t anything different I could have done or could have tried.

Are you finding yourself doubting what I am saying? If so, it just shows how ingrained the storyline of “she should have tried harder” is in our culture.

Same with food allergies. “If only mom had/had not given her child peanuts before the age of ___.”

So, yea. That’s why I am feeling bummed about food allergies tonight. Because the dialogue hasn’t changed much in 10 years. And because moms in my community are disagreeing about whether a food-allergy bullying scene in a kids’ movie is actually a problem or not.

Econ-mom: OMG I FEEL THIS SO MUCH. I haven’t seen Peter Rabbit, but I’m sorry to hear that new movies are still spreading this kind of misinformation. These blame issues are so much the same with autism! There is always a new cause-of-the-week or cure-of-the-week.  Here’s a particularly awful one that made the news a couple weeks ago -“Parents force children to eat bleach to ‘cure’ autism.” And of course many of the “causes” relate to what you did or didn’t do while pregnant or to your parenting style.  In fact just last weekend someone suggested that I withhold food to my younger one until he would eat some of the foods he currently won’t eat. As she put it, that’s what our parents did. (For the record my parents did not do this.)

By the way, it turns out that some of the things our proverbial parents did worked for some kids and traumatized other kids. Making improvements to how we raise children (based on science and/or applying some basic human rights to children such as “hey, maybe don’t starve them”) doesn’t have to invalidate our own upbringings or those of previous generations. We just learn more, and we can and should use that knowledge. Here is a nice article that summarizes the current best practices for helping picky eaters/kids with sensory issues to expand their diets.

 

**This post was posted today before Moms on 11 heard or know about the horrific school shooting in Florida. Neither Law-mom nor Econ-mom meant to be in anyway insensitive to today’s current events in mentioning gun violence or in posting about food allergies in lieu of this terrible event. Our deepest sympathies and condolences go out to the victims’ families and all families who have been harmed by gun violence.

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Food Allergies, Speech Delay & Autism – Oh My!

Let’s talk food allergies.

Now, I will be the first to admit that not all special needs are alike, and some special needs are much harder than others. I fully get that.

But having a child with food allergies is very hard. Multiply the allergies and you multiply the magnitude of the problem. When my eldest (lets call her SC1 for Sweet Child 1; my youngest will be SC2) was little, she had seven food allergies, two of which she has (gratefully) outgrown. But that means she still has five life-threatening allergies, which she will very likely live with for the rest of her life. (Trust me on this one. We have this opinion on good medical authority.)

I think this video does a pretty decent job of explaining what it is like to have a child with food allergies. Especially young children, who put everything in their mouths and cannot manage their allergies at all on their own. I definitely lived with high levels of anxiety about my daughter’s food allergies when she was very young. It made everything from preschool to playdates a challenge. Having one child with, and one without, food allergies, I can tell you how much easier it is to drop off the child who does not have allergies to a birthday party, or any other event that involves food. And they all involve food. For us, food is an omnipresent and ubiquitous danger.

Until SC1 was 4 or 5, she was allergic to sunflower. I invite you to go into your pantry and check out all the foods that contain sunflower. Especially if you are trying to eat organic (which we do), nearly every pre-packaged food will contain sunflower. Even raisins.

SC1 also has Oral Allergy Syndrome (OAS).  Many people have OAS. This is when you eat a raw fruit or vegetable, and your mouth and/or throat starts to itch. This is a result of cross-pollination issues (thereby likely affecting those who are also allergic to the pollen in question) and is not life-threatening. It is not a real food allergy. But many people do not understand this and confuse the two. I personally believe this is why many people do not take true food allergies seriously.

When SC1 was little, any number of fresh fruits would give her OAS. Her reactions would mimic her true food allergy reactions. So, basically, when I dropped her off at preschool and playdates, I had to say: “Just give her water.”  The unhealthier the snack — Oreos or Ritz Crackers — the more likely she could eat it, because it didn’t contain sunflower and it wasn’t a fresh fruit tricking her caretaker into thinking she was having a real food allergy reaction.

Think about what this would have been like trying to manage if I had been working full time. (Back then, I worked part-time from home.)

SC1 was also in speech therapy three times a week through her preschool years. And then SC2 joined her a couple years later. So, at one point, I as driving them to speech therapy six times a week.

(A moment of silence to let that sink in.)

My point about the speech therapy circles back to parenting special needs children and trying to work a full-time job. (Econ-mom, I know you get this.)

Before our school district implemented a food-allergy friendly policy (no food in classrooms), I had to take a day off of work every time SC1’s Kindergarten class had a class party. Because you can’t expect four room parents (room moms, really; let’s get real), and the teacher who has 22+ other charges, to understand all the ins-and-outs of your child’s very complicated food allergy issues. (“No, she can’t eat raisins, because they might have sunflower. She can have apples, but don’t freak out when she complains that her throat is itching. No, she really can’t have most chocolate, because it might contain nuts. Watch out for pea protein. It sneaks into anything that is gluten free.”)

Last point about managing food allergies: Just because we (food allergy moms) are reading every label, or staying at your child’s birthday party when all the other parents are just dropping off their child, does not mean we are a helicopter parent. In fact, we really, really hate having to act like a helicopter parent. (That linked article is one of my favorites. Just read that. I didn’t need to write this post.) We are just trying to protect our child’s life, is all. You know, basic stuff. We are also trying to save you the headache of figuring out what to do when our kid breaks out in hives and starts vomiting.

SC1 has had two very severe allergic reactions thus far where the epipen probably should have been used. [I am going to find and link a blog post I once read by a very sympathetic mom who also failed to use the epipen when she probably should have — if I can find it. Also, a post for another day: How much epipens cost, the fact that ambulances are not even required to carry them, and how much they fail.]  I can think of six other incidents that were thankfully less severe (two of which were her “first time” reactions to sesame and eggs that sent us to the allergist in the first place).

The point is: Even I have made mistakes, and I am all too familiar with how allergens can sneak into foods that you would not expect. (Did you know fish sticks can contain pea protein? Candy corn has sesame?) So, please do not judge me when you see me reading the label on the fake cheese sauce. Even if she has eaten it before, ingredients can change over time. Sesame oil is cheap, which is why it is used in so many foods.

I guess my overall point here is: Working full-time and parenting kids with special needs is hard. For some, it is impossible. What is the solution? Is there one?

[I didn’t even talk about the implications of food allergies on Halloween – my least favorite holiday that we just survived! Also a blog post for another day!]

Econ-Mom’s Comments:

This is a timely post from Law-mom (LM), because I was just thinking about how nice it would be if “autism leave” was a thing.  I’m not sure how helpful this would be for food allergies since, as LM points out, that is a problem that requires constant vigilance.  Autism, on the other hand, does get easier over time in some ways.  There is a huge learning curve that you have to deal with post-diagnosis. You have to get various therapies set up (which involves reams of paperwork, scheduling an evaluation, and then often hanging out on a waiting list).  You have to find a way to work these into your schedule (Ha!), because even if you could afford a nanny you will want to attend most of the sessions, so you can learn how to work on the various skills in your “free time.”  It’s no wonder many moms scale back or quit working altogether if they have an autistic child. [This is true for speech therapy, too, Econ-mom (EM). Our private speech therapist wanted me to attend all the sessions.]

I was 3 years into my PhD when we got Tuffy’s (my 6 year old’s) diagnosis. I was told he would need 20+ hours of therapy per week. I thought very hard about quitting school, but to make a long story short, I hung on by the skin of my teeth. One way I was able to do this was by lining up Tuffy’s speech, occupational therapy, and ABA (applied behavioral analysis) sessions on Wednesdays. (He also had ABA on Fridays, but often DH would attend that session). He also attended developmental preschool 4 days a week, but the school district was able to bus him from preschool to his daycare. This way, I was able to work 4 days a week, but it took almost 6 months to get this schedule nailed down. Initially we didn’t have busing, so I had to drop him off at preschool, run to a coffee shop nearby and work for about 1.5 hours, and then run back and pick him up. As LM said about driving to speech therapy, there’s no way I could have done this if I had had a “real” job. I suppose I could have hired a driver/nanny if I had had a real job, i.e. one where I actually earned more than the cost of daycare. Then again, if I had had a real job prior to Tuffy’s diagnosis, I’m sure I would have lost it already due to his frequent illness. (There is some recent research linking autism and the immune system and I for one am inclined to believe it.)

Anyway, having some kind of standard 6-month autism leave after getting a new diagnosis wouldn’t solve everything. For example, my heart goes out to this mom who decided to quit work when her son was 8 (so presumably had the diagnosis for a while). However, at the very least, it would send a message that we as a society want to support these parents and make them feel welcome in the work place if they choose/are able to stay in.

And one last comment about helicopter parenting – it’s funny how Courtney and I have both found ourselves in that situation, but for very different reasons. Autism parents end up being helicopter parents all the time, due to our children’s limited ability to communicate. It’s not a role most of us relish, but it is what it is.  For me anyway, it took some time to get used to that role, but nowadays I’m pretty comfortable inserting myself into my children’s play on the playground, and I am just grateful that the kids are still young enough that I’m not getting the “Why is your mom here?” type of comments, yet.