Although we were a bit hesitant to go to yet another doctor appointment for Bubba’s fever, we now have a definitive answer. Bubba has PFAPA – there was no question in the doctor’s mind of the diagnosis. The doctor was also certain Bubba didn’t have any other type of rheumatological condition or disease, and that his problems were solely related to PFAPA.
What was most encouraging about our visit was the fact that the nurse practitioner, as well as the doctor, took the time to sit down and go through a thorough history of all of Bubba’s symptoms, and episodes, to understand the full picture. It was also the first time I have handed the “health journal” (2 sheets of paper that list dates, length of time and severity of each episode) to a medical professional and not felt like they were labeling me as a crazy mother.
The first time I handed the journal to a nurse at the pediatrician’s office she looked at me like I was crazy, and followed up with a statement of, “Wow that is really …” pause… “Thorough.” The doctor followed up with much of the same type of look and comment. The only one who actually didn’t act like I was crazy was the resident, who found it very helpful for him. (Also one of the only people who believed he might have PFAPA).
Before leaving our visit the specialist doctor told us that if I hadn’t tracked Bubba’s episodes, and we hadn’t done the one round of blood work we did participate in, Bubba would have needed more testing, more blood work, and I would have been asked to go home, do a journal, return with it and we would have needed follow up visits. Because of what I did, I saved my child from further testing, and further visits for exams! I don’t care how crazy any of them thought I was, my child will be happier for it!
The doctor said that if Bubba had a more serious rheumatological condition he would have other health issues between episodes that would lend them to further testing and exams, and he is very healthy between episodes. The combination of the history provided by myself, the blood work we had done, and the lack of other health issues lead them to the 100% certain diagnosis.
What Can We Do For Prevention of Episodes?
Unfortunately, there is very little that can be done to help Bubba. We are attempting our own “prevention” methods, and the doctor said it isn’t harmful and we can continue it, but they do not offer any prevention methods from their perspective. We have been trying to prevent episodes through use of ibuprofen at critical times before the episode is scheduled to begin. Basically, we are doing 3 regular doses of ibuprofen the week before the scheduled episode, and then reducing the doses per day down as the period of the episode starts to pass.
The idea behind this is very simple, and I honestly don’t know why it’s not considered a prevention method. Ibuprofen is an anti-inflammatory medication. It inhibits inflammation in the body, and the episodes are caused by inflammation in the body. The ESR levels, that I have mentioned before, that are raised in Bubba during an episode, indicate inflammation. Therefore, if his levels are rising before an episode and are high during an episode, the reasoning (in my mind) is to keep those levels from coming up with ibuprofen, therefore, preventing the episode.
As I have said, we have a clear timeline of when episodes will arrive based on his history, and so we can gauge necessity of ibuprofen based on timelines, and also his mood and food intake levels. Both drop off dramatically within a few days of an episode arriving.
Since the last most horrible episode (May), we have been able to extend the time between the episodes significantly. We have experienced more mild episodes since May, as the length of time has begun to spread out.
Of course, we can’t say it is related to our own prevention, the doctor said it could just be a very good sign they are already starting to spread on their own. However, the doctor also said that tends to be very typical, and more than likely he will suffer a relapse back to the previous length of time between episodes, which was between 20-28 days. He said it’s very common in PFAPA to show a great change, and then have a large set back. However, he said he will continue to spread out episodes, even with a set back at some point.
What Can We Do During an Episode?
The typical treatment, which has been offered to us as well, is a dose of prednisone at the very onset of an episode. We have been against the use of prednisone since we learned this was a treatment option, due to the side effects, many damaging, with regular use of this drug.
However, we have been given a prescription and been told that if we don’t want to use it, we don’t have to use it. The doctor felt that if his episodes continue on the milder side, and continue to spread out, we shouldn’t use it to treat an episode. However, if we have an episode(s), such as the one in May that was relentless, the single dose of prednisone will stop the episode within an hour, and the medication only stays in his system for 1-3 days following the single dose. We have decided that if we encounter an episode that is severe, as we have for several months, we will use the treatment. But otherwise we will continue trying to control the environment and his response.
All in all – we feel confident in what is going on with Bubba, and we feel confident in our approach. The doctor reassured us that we are making smart, and correct decisions for his health. The best news for Bubba is – NO MORE APPOINTMENTS FOR A LONG TIME!