Becoming a mom always comes with question marks and anxiety especially surrounding the health and development of our children. For someone who has dealt with postpartum depression and anxiety, it is a constant internal struggle of when to bring my sick baby to the doctor and when I might be overreacting a little bit. For the first two years of my daughters’ life, every single month I had those thoughts and so many questions. Does she really have a fever? Is she teething? She’s a daycare baby and probably caught a cold, is it an ear infection?
Our first trip to the ER was the scariest thing as a new mom to a tiny little baby. Cecilia was 6 months old and had a 104 fever for four days and after calling her pediatrician they weren’t worried. Fevers are a normal and healthy response if your child is sick, Cecilia was still drinking her bottles at this point and so it was just a waiting game with Tylenol. Two days later it was a struggle to get her to drink anything, she had very few diapers to change and she was extremely tired. She wasn’t herself. It was a weekend so we couldn’t do an emergency walk-in to her pediatrician so we tried two Urgent Care facilities, which we were turned away from. The next stop was the Emergency Room.
We checked in, got our matching hospital bracelets, and were brought back in less than 10 minutes. She was really dehydrated so she was given an IV almost immediately and then she was fully checked over. She had no signs of an ear infection or anything else that would cause such a high fever for so long, which meant she had to get checked for a UTI which I knew was going to come back negative as well, as it did. Cecilia finished her IV and we were sent home to just watch her and bring her back if fever reducers stop working. The next day her fever was gone.
The next month she got the same 104 fever for 5-7 days and the next month it happened again. Each time I was blaming it on daycare, it’s cold season, she just caught something. After that first hospital visit I did start writing down the dates of her fevers and what was going on, especially since we did have a few more hospital visits with the same outcome. It wasn’t until the pandemic and the quarantine that we started looking for more answers.
Daycare was closed for four months and every single month Cecilia was still getting 104-105 degree fevers that lasted between 5-7 days. With us being fully quarantined, getting groceries delivered, and following all other precautions, she should not have caught anything. We just continued to deal with it until we had a really awful flare-up in October 2020 and it needed a trip to the Children’s Hospital of Philadelphia (CHOP). While there she got a COVID test, blood, test, full chest and neck scans, and checked for a UTI. Her blood work came back with a lot of inflammatory markers and the chest scan showed that her heart was inflamed. At this point, the COVID test had not come back and the doctors were concerned that she had the rare multisystem inflammatory system syndrome that some children were starting to develop after getting COVID. We got a second scan done just to make sure the first was correct while we waited for her COVID test and thankfully it all came back clear. Everything other than her blood work came back fine and we left the hospital with no answers again. Cecilia had a routine pediatrician appointment scheduled a few weeks later and we just happened to have a different doctor in the practice and when we brought up what we were experiencing, immediately he had a thought as to what it might be. He referred us to CHOP Rheumatology to look further into it but his initial thought was that Cecilia had recurrent fever syndrome. After going to her first appointment at CHOP Rheumatology, they confirmed that she did in fact have some type of Periodic Fever Syndrome but it would take more information to find out which one exactly, however, this wouldn’t necessarily impact her treatment plan. We finally had some answers.
Periodic Fever Syndromes are autoinflammatory diseases that create recurrent attacks that are seemingly unprovoked and not caused by a virus or bacteria. Basically, her immune system attacks her body for no reason. It is very normal for them to occur in a repetitive cycle and last for the same amount of days month to month. In Cecilia’s case, she gets a fever pretty much every 41 days to the day and without any intervention, her fevers will be about 104 degrees Fahrenheit for about a week. Depending on the type of fever syndrome you have, there may be other issues associated with them. In the case of our daughter, she experiences joint pain, stomach and intestinal pain, mouth ulcers, and exhaustion. After being sick for 5-7 days, she usually needs about 3-4 to finally recover and get back to eating/drinking and acting like herself again.
Now that we have an idea of what’s going on, there are a few treatments that we’re able to work through. The first treatment we were given for her was abortive steroids which we would give to her at the onset of her fever cycle. Unfortunately, this isn’t working for us so we’re hoping to try a daily medication if it’s approved by insurance. For now, it’s just a waiting game while things are sorted out. Cecilia is a trooper and she’s fine other than feeling really awful for a week every month or so.
When we were going through the diagnosis and dealing with all of the hospital and doctor trips that were incredibly stressful and upsetting. Between balancing work, her appointments, not knowing exactly what was going on, and just watching your sick baby, it was hard and heartbreaking. Now that we know what’s going on, it’s not nearly as upsetting or stressful. Most of the stress comes from working mom guilt now. I feel like a horrible person and employee asking off of work or asking to work from home every month because of my sick daughter and then at the same time I feel like a terrible mother for even questioning staying home with my sick baby. I’m so blessed and so appreciative that my employer is so understanding of what’s going on. If I was working anywhere else, I don’t think things would have worked out. Honestly, I probably would have been fired for the number of times that daycare has called me.
At this point we’re just taking everything as it comes, when she gets sick I take off of work, we get in touch with her doctor and we just deal with it day by day. Right now we’re just waiting to find out a treatment that she can take and one that is covered by insurance.