Sickness in young children is distressing at the best of times, and made much worse when persistent sickness cannot be explained. This is the situation our family found ourselves in, six months after the birth of our first son, Ted. In an effort to raise awareness, we have decided to write about our experience.
At six months of age, little Ted got very sick with Cytomegalovirus (CMV) – a particularly strong virus that hit both he and I hard. The worry was that Leanne would be next to receive it. Being pregnant at the time, this was quite concerning as CMV in pregnancy can lead to deformities in the unborn foetus. Luckily due to blood tests we established she had experienced CMV in the past, and was thus immune to it. With a sigh of relief our family recovered but little did we know what lay ahead.
What began was a series of “periodic fevers” for Ted – darn high fevers (often over 40 degrees), every 2-4 weeks, for around 4 days at a time, for about the next 12 months. It was a nightmare that just never seemed to end. Our best theory (and its only a theory) is that his young immune system was thrown into overdrive by the CMV virus, and the fevers were the body thinking it was fighting a bug when it wasn’t. We did eventually find instant relief, and I’ll mention how below.
But first I want to paint a picture of what our brave little boy put up with…
These fevers were relentless. Cold baths were required almost every few hours, for on average 5 days straight. All through the night, all through the day. Virtually no sleep for days for anyone in the family. Without cold baths, these fevers would not be relieved, and it broke our heart to see him constantly shivering, moaning, crying and wanting cuddles to help take the pain away. We were forced to give huge amounts of Nurofen and Panadol – way more than most kids could ever imagine receiving. I’m talking new bottles every other week. There are reports about these drugs being dangerous if given too often, but we had no choice. The poor kid was just in too much pain and we chose the lesser of two evils. God only knows if there has been lasting damage. We actually found Panadol had little if any effect, while Nurofen only lasted for an hour or two. We had to keep a diary of all the medication we administered, and would count down the hours until we could give him another dose. Steroids were given to us by doctors to shorten the duration of the fevers, but this would make our poor boy super aggressive and he wouldn’t sleep much at all. We also found the steroids seemed to reduce the number of days between fevers. Not a good solution.
The search for answers began, and this story is as much about the search for answers as it is about the pain involved. The medical profession has holes in its knowledge – we all know that. But we never thought we could repeatedly be told “I am just not sure what this can be” after running so many tests. There were “inflammatory markers” in his blood, but no one knew why. We were referred to dozens of doctors of various specialties and I won’t list them all. None of them could give us answers and they seemed all too ready to draw more blood in big syringes, which only added to our distress. In a moment of heightened stress, I even yelled at a doctor when he ordered a second round of blood tests after he forgot to include some things in the first test. Not his fault, I know, but it was a low chance of providing answers and we had simply had enough. Not only was there countless blood tests, there were plenty of urine, saliva and stool tests too. The urine and stool tests were particularly hard on a newborn baby – whole days could go by where our sole focus was capturing that runny “stool” in a bottle and racing it up the road to the lab. His poo was runny as all he would drink was milk to keep himself comforted. This was during the time we should have been introducing his thin little body to new foods – no wonder he still does not like his veggies!
It was during this year that our second baby boy was born and a new level of chaos began. We had to schedule doctor appointments at the last minute as we couldn’t leave the house when Ted was sick. Our baby was burning up with fever while the other one was breastfeeding on a stressed mother. Ted was forced to sleep in another room as he was waking up the newborn baby. One morning I found my wife asleep inside Ted’s cot – she had crawled in to comfort him and the urge to sleep had taken over! We lost friends as we were constantly cancelling on them due to “a sick baby” – a common excuse, lets face it. Baby classes or any appointments were impossible to make. We dragged ourselves away for a week long holiday to Noosa, and sure enough a fever started and we had to return home after a couple of days – the hotel had no sympathy and did not offer any kind of credit to use at a later date.
I began to do my own research on the internet, spurred on as each new round of sickness began. I’d stay up late googling all sorts of things, and stumbled across some interesting facebook support groups. These groups (with hundreds of members) were using the label “periodic fever syndrome” and this imaginative name seemed to capture the essence of what we were experiencing – periodic, clockwork fevers! Doctors had not even mentioned it as a possible diagnosis, and when we mentioned it to them, there was very little they knew about it. Seeing a paediatrician google “periodic fever syndrome” in front of us did not give us much confidence.
People in these Facebook groups (and a rare medical research paper on the topic) mentioned that in many cases, having the tonsils removed seemed to instantly fix the problem. Armed with this tidbit of information, we made another appointment with an ear, nose and thoat surgeon and mentioned the possibility of surgery to remove his tonsils. He began by lecturing us on the dangers of being over-reactive parents, stating that he sees young kids with fevers all the time and yanking tonsils out is not the solution in someone as young as Ted. We tried to explain what we had been through in vivid terms, so he could appreciate that the increased risks of surgery in a 1 year old may be worth it. The doctor said to us “if he still has these fevers in another few months then let me know”. By this stage it had been about 9 months already, but that did not seem to factor into his decision. So, for another few months we put up with these fevers and we were close to a ‘breakdown’. We had just moved our family from Lennox Head to Brisbane to be closer to doctors, and I had been made redundant at work (I was a remote worker), which was the straw that broke the camel’s back. After the agreed few months, we contacted him again and he reluctantly agreed to do surgery. Wheeling our little boy into surgery when we were not even sure it would work was a hard thing to do, but the ray of hope that it might fix him was what made it an easy one in the end.
After surgery the doctor reported it went smoothly, and he was surprised by the poor condition of the tonsils – they were worse than he had expected, even though he’d looked down the throat with a torch several times before. He looked sheepish as he agreed the surgery had been “worth it”, and we now began the wait to see if the fevers would return. But, firstly the recovery from surgery.- It was about 7-10 days of pure hell. It was the “last hurrah”, and even with our experience over the past year we found it difficult. But all through it we just kept telling ourselves this was the last we were going to see of this beast.
The smile soon returned to our boy, and he began to look more healthy after his appetite returned. He was not getting sick. That’s right, it seemed to be working. It. Never. Came. Back. From time to time he got sick like most kids, but we are 100% sure that removing his tonsils fixed the problem. Why? No one knows.
I’m certainly not suggesting that anyone whose child experiences these periodic fevers should rush into having their tonsils removed. But if the problem is not going away and doctors are not giving answers, keep it up your sleeve as a possible solution. Some have suggested that he may have simply had a bad case of tonsilitis all along, but we saw enough doctors who all looked down his throat to be confident it was not tonsilitis. And the clockwork frequency of it all just didn’t match tonsilitis. The fact it started after a severe virus makes us suspect his immune system was compromised in some way, and it will take increased medical research before doctors properly understand this ‘syndrome’. By raising awareness, perhaps more studies can be done sooner rather than later.
