Phew. Deep breath. I have a feeling I’m going to have a hard time pressing publish on this one.
Guys, O is sick.
I’ve bottled this one up long enough, and in the spirit of full disclosure, I want to tell you about the nightmare we’ve endured the last 4 months. I know my last post made it seem like my life is rainbows, gumdrops, and teddy bears, but no, it’s not. It’s been utter hell (which may help you all to understand why I’m keeping her in daycare all summer).
O has always been a sick kid. She’s super susceptible to illness, and before she was even a year old, had a couple colds, ear infections, and even Roseola. Within a week at daycare, she had caught Hand, Foot, and Mouth (although people say the incubation period is long before she showed symptoms, which would suggest she contracted it before she started daycare). But the last four months have been different.
Every three weeks/21 days, like clockwork, O gets a fever for 3-5 days. It gets really high (40/104 degrees), and she doesn’t present any real symptoms, other than swollen glands and a red mouth (which are common with fevers). She’s super irritable, doesn’t eat much, and often vomits at night. We saw countless doctors, including our pediatrician, and several walk in clinics, and they all diagnosed her with a “virus.” Even the ER doctor at Sick Kids diagnosed her with viral strep (not the bacterial kind that requires antibiotics), and sent us on our merry way. About two months ago, I stopped believing this diagnosis. I didn’t feel in my gut that this was “normal” and a result of “being a daycare kid.” So I started to conduct some research.
I found out about something called “Periodic Fever Syndrome”, which totally fit the bill. Essentially it is characterized by symptom-free fevers that get very high at regular intervals, and can tracked consistently with a calendar. When not in a febrile episode, the child lives a completely normal life. During the couple of weeks when O is well, she eats well, sleeps well, and resumes her normal activity. She can be difficult, but we’re not sure if that’s her personality/age, or she doesn’t feel great even in between episodes. However, no one would know she’s sick. It’s all still very disconcerting though, because I recently found out at the doctor last Thursday that she’s only gained 1 lb. in 5 months, and half an inch in height. She’s not growing well because she doesn’t eat much during the attacks.
I read that very often, doctors will dismiss these episodes as viruses, but that you have to push for help. Some methods of treating the fevers include a shot of Prednisone (a steroid) at the onset of an episode, or more drastic measures to completely eliminate the fevers, which are to remove the tonsils and/or adenoids. I had a tough time getting people on board with me. Hubby and my family were content to accept the virus diagnosis. I was not. I pushed for more help, and we eventually got O a blood test. She was not in an episode at the time, so her blood work was normal. Our pediatrician got us an appointment at the end of July to see a specialist at Sick Kids anyway, because normal blood work when they’re well is common. We also just had blood taken on Friday when she started this episode of fever, so we will find out the results of that tomorrow. I suspect there will be some red flags to bring with us to the specialist.
That being said, I’m trying to get our appointment moved up to before her birthday in 3 weeks, because I can’t fathom her having to go through this hell on her birthday. It’s probably the hardest part of all of this. Her quality of life has been so greatly diminished, that I just want to get an official diagnosis and get her some treatment.
Now, I’m not confessing all of this because I want your sympathy. I know that some children go through far more severe illnesses, and this is small potatoes in the grand scheme of things. I’m talking about it 1. to bring awareness to the issue, and 2. to tell all moms to trust their intuition and push for help. The Canadian medical system is wonderful because our health care is free, but it’s a double edged sword. Sometimes, you get what you pay for. I don’t feel anyone has really taken a vested interest in helping my child, so I’m going to do as much research as I can, and make things happen. A mother knows their child best, and I don’t care how many doctors think I’m aggressive and crazy. I will get my daughter help.