What a pain
To say that this year has been a lot is a ridiculous understatement. It is also not unique to me. I recently have been working on goals and resolutions for clients as well as blog posts to step away from the traditional jump right in and pretending everything changes. I recently did the day 2 exercise and was pretty surprised by what came up for me.
Day 2 is about slowing down and sitting with anything that you need to let go of and process. I grabbed my cup of coffee and journal and began to write about myself. The funny thing about freestyle writing, when you allow it to flow, is it often goes in an unexpected direction. So here is what came up for me.
This is Liv Jean. She is 20 months old. She also has low muscle tone, gross motor delays, and isn’t gaining weight. She has unknown food allergies and sensitivities, reflux, and GI issues. You should smell the farts that can come out of this little body.
Not to mention her mother is a real pain in the ass. Me.
The irony of having all of these health issues when I am a holistic health coach is not lost on me. Liv had reflux as an infant and would projectile vomit like no other. She was always on the small side, but all my kids were. At her regular check ups I would bring it up and it was always just a non issue. This happens with some kids. She will grow out of it.
We noticed that she wasn’t crawling when the other babies started crawling. We reached out to ECSE in St. Paul and learned that she had a gross motor delay and qualified for special services. These things just happen some time.
Liv still wasn’t gaining weight and wasn’t walking. I was playing with eliminating foods in my diet, but as someone with a history with an eating disorder this triggered every bone in my body. I wish I could say I instantly could change overnight for the love of my daughter. My disordered eating past was stronger. I realized it was just time to stop breastfeeding and control her formula to see what was making her sick. Instead we got to call 911 after giving her formula for the first time. She immediately broke out in hives and got a raspy voice. I remember when the Dr said you need to call 911 now and looking at my 3 kids thinking “I just wanted to know the dosage for allergy meds.” I had 3 sets of eyes staring at me as I explained “Everything is fine. Mommy is calling 911. Some EMTs are going to walk in the house. Everything is fine.” While I was also trying to measure the allergy dosage, keep everyone calm and was mentally saying “Fuck. Fuck. Fuck.”
We didn’t have to take a ride in the ambulance. Instead we were off to urgent care where I was informed that a dairy allergy is very unlikely and she will grow out of it. No more formula for no unless we try a non dairy option. Entirely freaked out we would not be doing formula. Something wasn’t right, but everyone seemed to brush it off or say she would grow out of it.
This was followed by months of Doctors visits, allergist visits, GI specialists, and nutritionists. I even got scoped to see if there was a family connection of eosinophilic esophagitis. We were lucky enough to have a friend connection with Kate Farms which is a high quality allergen free formula and supplement as we worked to find some answers. As well as multiple family members in various medical fields.
The prevailing message was that these things happen. Let’s give her reflux medicine. There is nothing we can really do. If you have ever heard a Doctor tell you this about your child I am sending you love right now. There is nothing worse than that feeling.
I walked out of everyone of those appointments heartbroken and pissed. Every appointment where her little scared eyes would look up at me and I would lie and say “Everything is ok. It’s ok. Mommy is here.” My heart would break again. There was never an answer, it was always expensive, and almost every time not covered by our insurance. Which is a whole other conversation and blog post.
So as any pain in the ass mother would do I didn’t take no for an answer. I made phone calls, I reached out to every connection I had, I looked into every alternative option, I read books, I asked more questions, I demanded blood work, I took a poop sample, and then took it again because I did it wrong. We paid out of pocket for her formula, her orthotics, her PT, her supplements and poop sample.
The timing of pandemic, distance learning, and trying to cook a gluten, corn, dairy, soy, peanut, nut free meals for my family of 5 all while trying to do the job I love was impeccable.
When it comes to my kids you better not bet against me. I will figure it out. I was told celiac wasn’t a thing in kids under two. I pushed for the blood work and she in fact does have the genetic marker for celiacs. On my own accord and with the help of our chiropractor we did an elimination diet and her reflux, skin rashes, and GI issues have gone away. Her poop sample came back and she has low amounts of gut bacteria, low variety and isn’t absorbing nutrients.
Do I have it all figured out? Nope, but we are on our way. Here is what I do know.
Don’t ever tell me there is nothing you can do for my kid. I will move a friggin mountain and find a way.
For profit insurance is a rigged and broken system and does not support health, but rather medications and disease.
Doctors are important and I am so grateful for access to high quality care. They way they are paid and the amount of patients they see isn’t conducive to patient health or finding the underlying cause. They also can’t be an expert on everything. Health is complex.
Whenever I have had that gut instinct as a mother I have been right. With my son’s undiagnosed lyme disease and Liv. When you think something is wrong you are probably right so keep asking questions and finding the next professional to work with until you get it figured out. Especially as women. Our concerns are much more likely to be dismissed.
There is a whole world of “alternative” options that are far more main stream in other countries. You always want to work with a qualified provider and do your research. To discover the underlying cause instead of just medicating often takes a chiropractor, a functional medicine Dr, or a naturopath.
You are your own advocate for yourself and for your family.
Sometimes there isn’t space for trauma, heart break and grief when you in the midst of it. It will come up later. When there is space take it and sit in it. Ask for help from a professional if you need it.
** The celiac marker does not necessarily mean that you have celiac, it means it is a possibility. Lack of weight gain & GI issues are symptoms in kids and it is possible to have celiac if you are under 2 years of age.
** Celiac and food allergies/sensitivities is complicated and not well understood. Celiac can have a wide reach of symptoms that are often misdiagnosed and in women disregarded.