Doctor’s orders for the allergy mom

Angry that I let myself feel lonely, unsupported and worse – letting others make me feel like an over-demanding helicopter parent; an overbearing allergy mom.

It is devastating and life-changing to receive that diagnosis of allergy in your child. I know because I was there 8 years ago with Sarah and 6 years ago with Thomas.

I was in denial for months – I did not want to believe it. My head was spinning from constant questions: how do I meet their nutritional needs if I have to cut all these foods out? How do I store foods they are allergic to? Can I cook their foods with the same pans? How do I remember to bring epi-pens with me? etc

My anxiety went into overdrive. I walked on eggshells and was constantly worried. Each hospital appointment brought more angst, disappointment and tears.

And now?

I am relieved that thankfully my kids have grown out of a lot of their allergies and what I am doing seems to be working to change their epigenetics (touch a lot of wood).

But I am angry. Angry that I let myself feel lonely, unsupported and worse  letting others make me feel like an over-demanding helicopter parent who was overbearing. Outwardly, I totally had it together. Inwardly, I struggled immensely emotionally with my battle against allergies. So much guilt, self-doubt, and feeling lost during one of the most vulnerable time in my life.

In retrospect, I should not have felt any of these things. I should have had more self-compassion and self-conviction but I did not. I was too busy feeling confused, sorry for myself, and searching for answers.

Here are some things I would have told my old self 8 years ago:

  • Turn your grief into positive energy. Yes, I would rather they didn’t have allergies and I hope you don’t think I’m being facetious, but looking back, their diagnosis has made the whole family healthier. It made me look into nutrition, really analyze what it is we are putting into our bodies, learn about the farming industry and our food, and wow – what discoveries I made! As a doctor I knew you had to eat healthily – but I never really had a deep understanding of the impact ‘bad’ food has on the body. And I don’t even mean burger and fries! I mean sugar, GMO, highly altered grains and inflammatory foods. A lot of chronic diseases are a result of the foods we/our parents ate, and what you feed your kids now has an impact on their health in 10-20 years time. So I’m grateful the building blocks I’m laying down for my kids are healthy (and cutting out dairy is actually a good thing in my opinion!)
  • Expect uncertainty. Allergy tests are notoriously inaccurate, and it is a hazy area of medicine where even allergists can’t agree on things. It is extremely frustrating, but expect uncertainty – your child might flare up for no apparent reason (and often the reason is: teething, another infection, or something else that has upset their system) but you won’t always get to the bottom of it. No doubt you will be frantically searching for ‘yet another’ allergen, but sometimes there is none, and it is just part of that childhood journey. So take the uncertainty in your stride and expect it. Chances are it’ll all iron out in the end.
  • You will break parenting ‘rules’, but that’s ok! My kids slept in my bed until they were 18 months, I carried them all the time, I fed them in front of the TV… and guess what! They have turned out just fine! People are always quick to give advice on how to raise kids but they probably don’t have allergic kids and don’t really understand what it’s like. When you have woken up for the 5th time in the night to comfort a baby in pain, it’s just about survival. I threw out all my parenting books because they made me feel worse. You know your child best – as long as there is love, there is no right or wrong way to parent.
  • Accept that it is normal to be anxious. Why wouldn’t you be? We HAVE to be helicopter parents at least until our children are old enough to fend for themselves. (Even then, we will still continue to worry as stats show teens are at the highest rate of anaphylaxis). What’s scary about allergies is that reactions can come totally unexpected. So we are not control freaks and this is not neurotic behavior – this is what every normal mother would do if their child’s life was on the line. So don’t let anyone make you feel otherwise.
  • Do NOT feel guilty and hold your head up high. I spent way too long feeling guilty for making special requests and questioning menu items and ingredient lists. No, you are not one of those annoying people who holds up the line requesting only 2 pieces of onions in their burger because they felt like it – it is a necessity that you make sure your child’s food is safe…Do not feel guilty and do not feel bad.
  • Teach your child to advocate for themselves. I had a light bulb moment when I caught Thomas staring at me profusely apologizing on his behalf to the school chef, and I thought – hold on, I don’t want my child apologizing! EVER! It is not his fault and he has every right to make demands to ensure his safety. So now I tell people he has allergies with pride, and see stupid questions or remarks as opportunities to educate and advocate for allergies. Through my own behavior, I’m modeling to my kids that they deserve the attention, the extra care, and they deserve to be included. IN EVERYTHING.
  • Trust your instincts. If you feel your doctor is brushing issues aside and not providing the answers – look elsewhere – get a second opinion. Doctors are not created equal – there is a wide variability in their capability so don’t let the inadequacy of one doctor dictate the health of your child. I had a painful, long journey to diagnosis with Sarah. I thought my story was bad, but Sharna of Jameshealthjourney has been through much worse: James has FPIES (a very rare type of food allergy)/autistic spectrum disorder and she has been through the works just to get James diagnosed and on the right treatments…We need to be strong advocates for our kids because it is a very difficult area of medicine to navigate.
  • Join a support group – facebook, instagram, twitter have networks of allergy moms (e.g. milk allergy mom, allergy moms, or follow my page on facebook for tips). I recently discovered what a source of support Instagram and Facebook can be, and wish I had this 8 years ago e.g. Jamie of milk allergy mom is such an inspiring advocate and provides really useful updates and information/product recommendation for those with milk allergies. I’ve also made friends with fellow allergy moms on instagram and find great recipe ideas, product recommendations and moral support there.
  •  Make friends at the doctor’s office or hospital appointments – sound crazy? But why not turn these horrible appointments into something fun! Say hi to the mom sitting next to you and strike up conversation. You have more in common than you think! … Not every mom will respond with welcome, but I bet they feel as anxious are you and will appreciate an ice breaker and you never know where it might lead.

Finally… let’s all give ourselves a pat on the back. Raising kids is hard enough.. but raising allergic kids?… we really do deserve medals.

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3 Comment

  1. Robin says:

    This blog spoke to me on so many levels. I’ve caught myself apologizing for my sounds allergies before and I hate that! It’s not his fault. So many great tips here. Love our Instagram community and I always like to chat with other moms at the allergists office. So great knowing we aren’t alone in his crazy journey!

  2. Shahla says:

    Being the parent of allergic children, I remember all of these feelings and still experience some of them although after years, it has gotten easier to navigate. I had a similar AHA moment a year ago and since then have stopped apologizing for my daughter’s allergens too. Your post is full of honesty and compassion. I wish I had read this when my daughter was first diagnosed. Thank you for sharing ❤️

    1. admin says:

      Thank you Shahla! Glad you liked it 🙂

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