Where Are We Now and What Have We Learned?
If you haven’t read Part One and Part Two – do that now and then come back. Or don’t, it’s really your choice. For the third part of this series, I wanted to give an update for where we are now and talk a little bit about what we have learned along the way. We have continued working with Arden’s naturopath (the second naturopath) and we’re taking a very conservative approach. We’re sticking with the same diet and we are going to continue for another 3 weeks to really feel like we have a strong foundation of no reactions. I was really pleasantly surprised that she didn’t have a reaction while we were moving. We had 2 weeks of a lot of chaos that included eating out more than usual. At this point I’m pretty good at knowing what to order and what questions to ask, but eating out always carries a much greater risk of exposure. After these next 3 weeks, our plan with food reintroduction is to try things slowly and take a multi-step approach. I will try the food first and nurse her like usual and then if she doesn’t react to me eating it, we will let her try the food. This reintroduction phase will probably take at least a month if not longer and we will continue to avoid cow dairy and gluten, but hopefully we will be able to enjoy some goat/sheep dairy and gluten free grains in the future!
The idea of reintroducing foods is exciting and terrifying for a few reasons. First, I’ve really gotten used to the way that we are currently eating and I have to acknowledge that I am a great abstainer, but not the best moderator- so introducing things slowly and limiting certain foods will probably be more difficult for me. I have strong emotional ties to food and cooking is an important part of my identity which makes these transitions more difficult. With each food that we’ve eliminated on this journey I really had to mourn that food. I logically knew that Arden was improving and that my own health was improving, and while I am celebrating those wins, I still had to go through a process to accept where we are at now. Of course, I’m also afraid that this will throw her back into having reactions. Not knowing if your baby is going to wake up with a swollen face is pretty terrifying and I was in a state of constant anxiety for the first few months of this. Now that she’s been clear for awhile I’m not in that same state, but the reintroduction will mean watching her like a hawk for any sign of a reaction and that means having to manage my own anxiety.
Along the course of this health crisis I’ve had to lower my expectations of getting a diagnosis. At first we were so focused on looking for the name of some condition that fit her symptoms and even after seeing so many specialists we still haven’t named this thing. I was listening to Dr. Mark Hyman’s podcast with Dr. Sidney Baker the other day and he said something like “diseases don’t exist” and what he meant is that the name of a disease is nothing more than the name of an idea, a collection of symptoms and it usually doesn’t give you the cause. This idea resonates, because at this point not naming this thing is okay with me. After seeing a string of specialist we had one more specialist on the list- a pediatric immunologist in Seattle. When this was suggested by our pediatrician my first instinct was to do whatever it took to get an appointment with an expert to get the best care for Arden. However, in what I now think was a lucky accident, we never got the referral to the pediatric immunologist and the work we did and continue to do to improve Arden’s gut health and overall inflammation by removing trigger foods is working. The reality is, we could have seen that pediatric immunologist and he may have given us a diagnosis that most likely would have come with a drug protocol that would have distracted us from the root of the problem. For now, we are accepting the idea that Arden’s ear infection, reaction to the antibiotic and subsequent treatment was a perfect storm for her and it sent her immune system into overdrive. We were not doing the right things to optimize gut health and she wasn’t able to tolerate the assault to her system.
So what have we learned along the way? Some of these things are pretty straight forward and practical and some are a little more philosophical and I “knew” them all before we got into this but it took this experience to actually KNOW them. Here’s my list:
- Ibuprofen destroys your gut- don’t take it unless it’s absolutely necessary. At the time that this all started we were giving Arden ibuprofen for teething and then for her ear infection. Since learning what I now know about ibuprofen, we haven’t given her any and she has managed teething just fine without it!
- If your child has to take a steroid medication to calm an immune reaction, don’t let them get a vaccine a week later. This is may be controversial because it’s about vaccines, but I think that this is what triggered the lasting reactions. I think that Arden reacted to the antibiotic and then we gave her prednisone to suppress her immune system (because her face was extremely swollen and we were concerned about airway involvement) and then a week later (when she seemed back to normal) we let her get a vaccine at her 9 month check up. This is the perfect storm that I was referring to and I think it could have been avoided if I would have been more cautious. She didn’t NEED that vaccine that day and we should have waited.
- If you are having skin reactions you need to be looking at your gut health and looking for food sensitivities. Your skin is the first place where your body is going to show you that it doesn’t like something- whether that’s with acne, eczema, or in Arden’s case- facial swelling and hives. Elimination diets are hard but they are THE most effective way to know if you have food sensitivities.
- You (and your partner) are the only ones who are going to advocate for your child. Just going into any health situation knowing that will save you from a lot of miscommunication and disappointment. Our healthcare system in the US is a disaster- we are lucky to have great health insurance through Bryston’s employer and we live in a place where we have access to a diverse and excellent network of healthcare providers and it was still a maze to figure out. Wouldn’t it be nice to just be able to rely on your doctor to guide you through a health crisis? I think anyone who has had a health issue can tell you that it doesn’t work that way and that you have to advocate for yourself. This is especially true in the case of a young child, Arden could not speak for herself to tell us what was going on and it was really up to me to be her voice.
- Finally, for a little real philosophy I’m going to quote Hippocrates and say “Let food be thy medicine”. It’s interesting to me that western medicine takes the Hippocratic oath “First do no harm” very seriously, but somehow “Let food be thy medicine” really got lost along the way. We are at a point in history where some pretty drastic diet changes need to happen to stop the epidemic of chronic disease that is literally crippling the United States and pretty much the rest of the world. Your food choices matter and listening to your body (not your sugar/processed food addicted brain) is the easiest way to figure out the best way for YOU to eat! I’m not saying this lightly and I’m not saying that diet changes are easy but life is a whole lot easier when you feel good and eating the right foods is the best way to feel good everyday!
That’s all I’ve got for now, I will make sure to keep you all updated as we start to reintroduce foods and we will have more posts about our own nutritional philosophies on the blog soon. Because guess what?! Bryston and I don’t eat the same way! Like the song says- he’s a little bit Keto and I’m a little bit Paleo- is that not how it goes? Right now we are just happy to have two healthy kids and to be able to focus on moving forward on this journey to optimal health for all of us!