I was trying to write this post last night, trying to find a way to explain what has been happening to Arden. But she’s been clear for awhile now (almost 4 weeks) and we’ve been weaning her off of the prescription antihistamine that she’s been on since early May. I was seeing the future of adding foods back in and getting back to “normal”. I decided to give it a break and got ready for bed and of course Arden started to cry right as my head hit the pillow. I looked on the monitor and she was standing in her crib and only one bright monitor eye was staring back at me, her right eye was swollen shut. That probably sounds really scary and it’s still very scary but we’ve had 4 months of waking up to swollen eyes/faces and unexplained hives and bruises and somehow as time goes on things start to feel normal. I actually have to fight back against accepting this new normal, because it’s not normal for your baby’s face to swell up for an unknown reason. It’s not normal to have hives that don’t really seem like hives or unexplained bruises.
Early in this journey I was talking to my mom and she asked if I had found anything like this on Google. I asked if she meant that I googled “my baby’s face keeps swelling for no reason” and found a similar story and the answer was definitely no. I have done a lot of googling throughout this process- I have scoured message boards and Facebook groups, read medical journals and blogs, listened to podcasts and purchased books. I still have never heard or read about another case that sounds like Arden’s and that’s why I’m writing this story. I want another mom to be able to google “why is my baby’s face swelling” and find this blog and maybe learn something but more importantly feel less alone.
Part One – The Ear Infection
A few things before we jump in here: before any of this started we ate a 80/20 Paleo diet and Arden and I had been dairy free since she was one month old. Arden was also teething hard core during this time and early on we were giving her infant ibuprofen before bed when it seemed like her teeth were really bothering her but we stopped giving her ibuprofen when I discovered the damage that it does to your gut. Arden was also taking probiotics and she saw a chiropractor to help with a tight neck and her reflux as a newborn.
Okay, now we can start-
When Arden was 9 months old she caught her brother’s cold and after a few days I brought her to our pediatrician and we found out that she had an ear infection. Since she already had a fever we decided to start her on amoxicillin. This was on a Friday, and by Saturday afternoon she already seemed much better.
On Tuesday, March 6th she woke up with a very swollen face. Seeing her like that was terrifying and I sat next to her in the backseat while Bryston drove us to the emergency department and just watched to make sure she was breathing. Luckily my sister was visiting and was able to stay at home with Everett (who was still sleeping). When we arrived at the hospital everyone was pretty relaxed, they thought it was an allergic reaction to the amoxicillin (Bryston has a penicillin allergy) and since it wasn’t anaphylactic they gave her some Benadryl and sent us home with a prescription for a different antibiotic. After two doses of Benadryl her swelling seemed to be increasing so I called our pediatrician and brought her into the office that afternoon, the pediatrician we saw that day prescribed 3 doses of prednisone and did an albuterol treatment because she thought she heard some wheezing (that’s the only time a doctor has suspected any respiratory involvement). We gave her 2 of the 3 doses of prednisone and continued the Benadryl for the next two days and the swelling went down. Over the next week we finished the new antibiotic and she seemed to be doing well. On March 14th she had her 9 month well check where she was given a clean bill of health and received the Prevnar vaccine.
In the early morning hours on March 15th Arden woke up crying and we brought her into our bedroom to find that her eyes were swollen shut. This time when we called the nurse advice line they recommended that we wait to take her to our pediatrician when they opened in the morning. I could still get fired up talking about the pediatrician who we saw that day. She refused to acknowledge that the two swelling incidents could be related and she was dismissive and argumentative. I left feeling stupid and angry. The good news is that this pediatrician visit pushed me to take things into my own hands, I immediately found a highly recommended allergist and made an appointment and started a food journal. At this point we knew that it couldn’t just be a reaction to amoxicillin and we started to wonder if a food could be causing these reactions.
One week later we were back to the pediatrician when Arden suddenly had unexplained bruises on the backs of her knees, her back and her inner thigh. If we weren’t scared before we definitely were now. I was watching her like a hawk and any mark on her skin made my heart start to race. I was googling things like crazy and starting to feel like any food that she or I ate was going to cause a flare. At this point the pediatrician (a different one this time) started to take us a little more seriously – this was officially weird now and they wanted to find out more so she ordered a few blood tests. I want to take a minute to talk about our pediatrician- we chose our pediatrician when I was pregnant with Everett- the practice is led by a well known, holistically minded pediatrician and we had been very happy with the practice for the 3+ years that Everett and Arden had been patients. However, up to this point we had only had well visits with our favorite nurse practitioner and two uneventful sick visits for Everett. I loved our well visits and always left feeling like I got an A+ on my mom report card. Dealing with an ongoing medical issue became an entirely different experience and has opened my eyes to many of the faults of our healthcare system. The kids are still patients at the practice but we will probably only go for well visits and we are seeing a naturopath and other specialists for Arden’s care.
The blood work didn’t really tell us a whole lot and I was anxiously awaiting our allergist appointment. On March 23rd Arden’s face was swollen again although it was more mild and we were trying to avoid antihistamines for her allergy testing on the 28th so this time I decided to just watch her to make sure things weren’t getting worse. Everything seemed fine until the evening of the 24th when I discovered a very strange mark on her back and her face started to swell more. I freaked and since it was a Saturday evening we headed back to the children’s emergency department. They weren’t so relaxed this time and we were brought back to a big scary room immediately. They did more blood tests, but again we left without any answers just Benadryl, an EpiPen prescription and instructions to follow up with our pediatrician and hope that the allergist would have more answers. On Monday Arden still had weird “hives” and we saw the main pediatrician at our practice for our follow up- just like every other doctor we had seen so far, he thought this was weird, referred us to hematology to check for a blood disorder, and hoped that the allergist would have some answers. He also started Arden on daily Claritin, some supplements to support her immune system and suggested that she and I avoid gluten, dairy, and nuts and stick to a diet primarily based on organic vegetables and fruit.
This story will continue with the specialists starting with swollen eyes for her allergist appointment on March 28th. Stay tuned…