While we waited for our specialist appointments, Arden and I started on our journey with an elimination diet. To start, we cut out gluten, dairy (which was already out), eggs, and nuts. At this point I really couldn’t pinpoint any common factor that triggered the reactions and I honestly felt like anything that I fed her or that I ate myself might be poisoning her. I was researching high histamine foods, low FODMAP foods, gut healing foods, the autoimmune protocol diet – I was looking into anything and everything that might be the key to making this all stop. I was also watching her like a hawk and noticing any tiny mark that showed up on her skin or any subtle sign of swelling. I was incredibly anxious and spent most of my time searching for any information that I could find online. Most people say to stay off Google when dealing with a medical issue, but I thrive on information and it helps to calm me down. With more information, I feel better armed to deal with anything that might happen. I have been asked if I work in healthcare multiple times throughout this process, this is probably a bad thing, but it makes me feel like I’m basically a doctor now.
We had our first allergist appointment on March 28th and for good measure Arden woke up with a swollen eye. This is the appointment that everyone had been waiting for because the allergist was supposed to have the answers. Unfortunately, because she was on Benadryl we couldn’t do skin testing for allergies and instead got an order for allergy blood work. This meant we would have to wait for the blood test results to find out if she had any allergies to the most common allergens. I was anxious to get the results, but after hearing Arden’s case the allergist did not believe that she was having allergic reactions and we decided to wait to combine the allergy blood work with the blood work from hematology. So more waiting, and in the meantime she recommended that we put Arden on Zyrtec once a day plus Benadryl as needed to hopefully calm her system down and stop the reactions.
The next specialist we saw was the hematologist in early April, I was nervous about this visit (they are cancer doctors after all) but Arden didn’t have the symptoms of any of the serious blood disorders and since she had already had 2 CBC’s done we knew that her white blood cell count was normal. I LOVED the hematologist that we saw. Honestly, I was expecting a stuffy old dude who wasn’t going to listen to me and would dismiss all of her symptoms (I don’t know why I thought this). Instead, we met Dr. Haley, an awesome young female DO (Doctor of Osteopathic Medicine) who really listened and cared about finding an answer. After hearing Arden’s story she ordered blood work to check for a platelet disorder (which would explain the bruising) and a condition called hereditary angioedema which is the medical term for swelling. She even called me at 6pm on Friday to give me some of Arden’s results. This was the first time in this process that I felt like someone really cared about what was happening to Arden and wanted to get to the bottom of it. In the end, Arden does not have hereditary angioedema or a platelet disorder and we finished our hematology work up without finding an answer, but I will always remember Dr. Haley and if you need a pediatric hematologist then she’s your girl!
Later the same day, we saw our first naturopath and did a food sensitivity test. I’m going to write a whole post on allergy testing vs. food sensitivity testing because it’s a complicated subject, but for now just know that they are different things and food sensitivity testing is a little woo. After our wonderful visit with Dr. Haley, I was honestly a little surprised when I did not connect with the naturopath, but she rushed the food sensitivity results and had them for us the next day. When we went back, they told us that Arden is sensitive to potatoes, sweet potatoes (they’re different things), all forms of wheat, dairy when eaten with cane sugar (weird), oats, and cassava/tapioca. The naturopath also told me that I was the “picture of potato intolerance” I’m still not sure what that means but it didn’t help with my already skeptical opinion of this particular naturopath. Even with my doubts, I moved forward with eliminating those foods for the two of us.
All this to say that after seeing multiple pediatricians, an allergist, a hematologist, and a naturopath for multiple visits throughout the month of April, no one had a clear answer of what was going on with Arden and all we could do was continue to give her antihistamines and see if the elimination diet worked to stop the reactions. Here’s a recap of what we eliminated from our diet- dairy, all grains (we started with gluten containing grains and went to all grains when it seemed like she would have more reactions when she ate grains), potatoes, sweet potatoes, and cassava/tapioca. At this point we had added nuts and eggs back in and I didn’t think they were problematic for her. We also stopped giving her antihistamines by mid April because they didn’t seem to have much of an effect.
Going into May, she was still reacting regularly and one thing that we started to notice is that she would react every time she had chicken, this led us back to the allergist where we were able to see the main doctor in the clinic and do skin testing for chicken. Her chicken test came back negative and this allergist also said that he did not feel like she was having allergic reactions and that we should see a dermatologist (cool, a new specialist). Around this same time the naturopath decided to order some additional tests to look at her lead level and to check for Lyme disease. We had been talking about trying to do heavy metal testing for awhile but it is very difficult to accurately test for heavy metals and we had gotten some push pack from our pediatrician. In the end, the naturopath decided to just run a standard blood test for lead and her results came back as slightly elevated but not alarming. We started taking chlorella to help with chelation. Her Lyme test was also negative, however Lyme is a whole world of confusion so we haven’t completely ruled it out.
We also had our first dermatologist appointment in May where we got the brilliant diagnosis of chronic idiopathic urticaria. The brilliant part is sarcasm in case you didn’t read it that way. Chronic idiopathic urticaria broken into layman’s terms is hives that last for longer than 6 weeks and don’t have a known cause. Again, I’m pretty sure I’m a doctor now if that’s considered a reasonable diagnosis. The dermatologist decided to try her on daily Zyrtec (again) and a prescription antihistamine to try to “reset her system”. The goal was to have her be symptom free for 4 weeks and then stop the medication and hope for the best. I also decided to expand our elimination diet and stop eating any poultry, eggs, and ghee (I had been eating ghee the whole time that we dairy free and it seemed fine but I wanted to be 100% dairy free just to check). We quickly realized that she was not reacting well to the Zyrtec and stopped that, but kept her on the prescription antihistamine. From the end of May through the beginning of July she was almost symptom free so we decided to wean her off the prescription and see what happened.
And that takes us to now, she’s had 2 mild eye swelling reactions but has been pretty clear overall. We are working with a new naturopath (who I like and trust a lot more) and she wants us to stick to our current elimination diet for 4 more weeks before we start trying to add new foods in. We still don’t have an answer for why this happened/is happening, but we’re just taking it one day at a time and hoping that we can heal her gut and her immune system will calm down as a result. This story will continue as we try to reintroduce foods and see how she reacts. I am also going to write a post about my own regrets and reflections and offer any recommendations that I have for anyone who might be dealing with a similar issue. As always, I would love to hear from anyone who has been through something similar.