WARNING NOTE: Usually I focus on educational information, intermixed with my personal stories, however, this post is solely a personal experience and commentary. Although you may find it educational, it was not created using a source, other than my personal feelings.
A Mild Episode
Late afternoon, when changing Bubba’s diaper I noticed he felt warm.
I wondered if this was it… the dreaded fever episode. This time is has been 44 days since the last one, which is the longest time between episodes yet. Every day we have been wondering if there is another one on the way. We have been so excited with hopes that it is not coming back, but I knew that was unrealistic.
5 p.m. – evening before
Noticed the glazed over expression on his face, felt extra warmth, but knowing how he feels with a temperature gauged it at no more than 100 degrees at this point. I quickly grabbed the Advil and dosed him. He laid down on his grandma’s lap during her visit. That’s when I had the sinking feeling in my stomach. He never lays down resting.
6 p.m. – dinner
While eating dinner, he suddenly started screaming and became clingy. He wouldn’t finish eating and only wanted to sit on the couch with his daddy. I told my husband, I had a bad feeling about what was about to come. He agreed.
6:30 p.m. – 8:15 p.m. – evening
Bubba sat on the couch and didn’t want to move or eat his usual bowl of ice cream before bed. He watched his show until bedtime.
10:29 p.m. – bedtime for me
I heard Bubba cry out several times between 10:15 p.m. and 10:29 p.m. when I had to turn off the light and try to force myself asleep through the worry and anxiety. As I lay in bed, I tried to remind myself, this wasn’t the first time this has happened. What are you so worried about? Why worry now? You know what this is, you know how to handle this. I realized it wasn’t at all that. It was the anxiety of what my son was now going through again. It wasn’t fair. Why does he have to endure this? I fell into a partial sleep.
11:15 p.m. – Crying
I heard Bubba crying. It was for about 30 seconds and then stopped.
11:18 p.m. – Crying
Another 30 seconds of crying. I was wide awake filled with sheer worry and dread. It was here. Again.
11:30 p.m. – Crying
Another 30 seconds of crying. It was decided – the fever was here. I couldn’t sleep anymore. I just laid waiting for the crying that meant it was time to go into his room.
11:55 p.m.– Crying
It was time to go into his room. I stepped outside the room and filled the medicine dropper with the correct ibuprofen, and filled a cup of water from the bottle of water, and the empty cup I had set out on the highchair we were storing upstairs. I had set up an “episode” table. I had hoped I would never need it again after the last one, but here we were.
I entered Bubba’s room with feelings of dread and despair. Bubba lay crying and squirming in the crib. I set down all the supplies on the nightstand and reached into the crib to feel him. On fire. Felt like he was running a temperature of about 101-102. I can tell by touching him now, since we have been through this so many times. I picked him up, did a diaper change. As he lay on the changing pad, he was screaming and holding his head and all I wanted to do was take it all away for him.
We sat in the rocking chair, he had a nice long drink and took his medicine. We rocked for 15 minutes and he wanted to get back into his crib. I lay him down and headed back to my room to try to lay down. I hadn’t set up the episode cot inside his room yet. I was hoping he would fall back into sleep and it would just stop.
12:18 a.m. – Lying in wait
As I lay trying to calm myself down and get some rest, I cried. I was just so hoping this would never happen to him again. I started to plan out the course of action. We needed to take him to the doctor to have all germ-related illness ruled out, and then needed to have blood work done at the lab. It was early Sunday morning. Should we take him to the doctor appointment on Sunday, and then labs on Monday? Or should we do it all Monday? The labs were closed on Sunday. It depended on his sleep for the rest of the night. Thinking of sleep, I reminded myself that I am no good to him if I don’t sleep. I needed to calm down.
12:30 a.m. – Crying
Bubba was crying again. He wasn’t stopping. It was time to set up the episode cot and stay in the room. I grabbed my pillow, turned off the monitor and headed toward his room. Before I left the room, my husband wanted to know if he should take the first shift? Over the last 10 months we had determined a few methods of dealing with each episode over night. Typically Bubba would wake up around 11:15 p.m. and be awake, and crying on and off until approximately 4 a.m. If we could split the night into 4 hour shifts – then at least one of us received a solid 4-6 hours of sleep, then we would rotate it the second night, and so on. I was wide awake and worried out of my mind, so I went back in for the first shift.
I pulled our crying Bubba from his bed, no cooler yet. He was still on fire. We rocked in the chair, had some more water until he wanted to go back in his crib. He cried and I held back my tears.
1 a.m. – Asleep?
I laid down on the episode cot, which is a camping cot with a sleeping bag on top and my pillow. I couldn’t relax and I needed to try to sleep as much as I could. The cot wasn’t much more comfortable than the stack of blankets on the floor that I used to sleep on before we remembered we had a camping cot. I couldn’t decide which was better, but at this point I wasn’t going to get off the camping cot.
1:15 a.m. – Crying
I got up off the camping cot and pulled Bubba from the bed, still not any cooler. We sat and rocked and had more water.
1:30 a.m. – Asleep
He finally seemed as if he was going to fall asleep. I lay back down on the camping cot and did my best to sleep. I was tossing and turning and trying to get some rest until I woke at 3:30 a.m. My shift was done.
3:30 a.m. – Back to bed
I got up off the cot, forgetting my pillow, and went to exit Bubba’s room, as he stirred and cried out. Maybe my shift wasn’t over yet. I wanted to cry more, but I didn’t. I stood at his door waiting to see if he needed something. He turned over and seemed to be asleep.
I crawled back into bed and my husband asked how it went. He had ibuprofen at 12:30 a.m. and was restless until 1:30 a.m. and he’s been sleeping decent, but did seem to stir when I left. Damn, my pillow was in his room. I searched the room for an extra pillow and located a small pillow in our chair. I reminded myself I had to sleep. I turned the monitor back on.
3:45 a.m. – Crying
Bubba cried out for a few minutes, but then quieted back down. I had to stop listening to it and sleep, it was my husband’s shift.
5:05 a.m. – Crying
Bubba was awake and crying for several minutes. I awaked my husband and told him he had to go in there that Bubba was not falling back asleep. Husband left the room turning off the monitor. He returned in minutes, he needed medication and some water and wanted to go back to sleep.
Day 2: Doctor visit
Bubba did not want to eat breakfast, typical of an episode. He had some water and we went to our doctor appointment.
10:25 a.m. – Arrived at office
Waiting in waiting room for 15 minutes, an eternity for Bubba. His fever had been reduced due to a slightly earlier dose of ibuprofen. This was a mild episode. Called in to exam room and fever was 99.6. This is a low fever for him. I wouldn’t even consider it a fever, actually. Nurse believes there is probably “nothing” wrong with him. I repeated that we were there because the other doctor in the practice believes he has PFAPA, and would like him to come in and be tested and have blood work. We are there because of that. Nurse asks me what the condition is again? PFAPA I state. “Can you say that more slowly, I didn’t get all those letters down…” I knew then how the visit was going to go.
“The resident will be in first,” she says and leaves the room. I assumed resident with the doctor. Oh no. Two examines. Bubba doesn’t like exams. Resident is very thoroughly – takes my health journal and is very impressed and finds it very useful. He believes that Bubba probably does have PFAPA, and it is the first child he has ever seen with it. He leaves, and now time (well another 20 minute wait) for the pediatrician to come in. He examines Bubba, and finds he just isn’t sold on PFAPA-Of course not. Two doctors in the same room examining the same child and they do not agree. This convinces me even more – he has PFAPA.
I push for an ESR (sed rate), as pediatrician feels it will show nothing. I believe it will show everything. We have a back and forth discussion where I push the test, and a referral to a pediatric rheumatologist. He wants us to see another doctor for infectious disease. Bubba has never tested positive for any of the infectious diseases. This pediatrician will add more blood work to the panel to prove his theory of infectious disease. After finally finishing up, with no paperwork, and having to track it down, we head to the lab.
12 p.m. – Arrive at the lab – it is now Noon. No paperwork there for us. I tell the phlebotomist what the tests should be… ESR, CBC, and something else I can’t remember I say. She finds some old paperwork (last episode), but says not all those items are there. I said I am sure ESR is the test. She writes it on, attempts to get new paperwork from my pediatrician – with no success while we wait. They will retrieve the paperwork later, and then process blood after they receive the papers. ESR will be drawn! Score one for mom!
1:29 p.m. – Bubba sleeps on the way home
We arrive home, and after a family discussion that evening we are leaving “the system” for his condition. We know he has PFAPA and there is very little that can be done for him. We will no longer be fighting the pediatrician every month, and we refuse to continue putting him through endless exams, and repeated needle stickings. We know what it is and we will deal with it on our own. At this point we do not want to administer the typical treatment of steroids to our 17-month-old son anyway – so what’s the point of staying in the system.
Day 3: Results
The doctor’s office has called, as it turns out the ESR is elevated – 35. Normal range is up to 15. This indicates (same pediatrician who believed he had infectious disease), it’s probably PFAPA. All the other tests were normal, and he doesn’t have the conditions caused by infection the pediatrician initially considered. The pediatrician admitted it looked more like what I thought than what he thought. He does not believe it is a more serious rheumatological condition at this point, as the number for ESR would have been even higher. We will see an infectious disease specialist (I still do not understand why), and go from there. They will send us to a pediatric rheumatologist if they deem it necessary. He will need follow-up blood work in 2 weeks to determine if his sed rate has returned to normal. If it has not he may have other issues.
After hanging up, we discuss all this information. We will continue with our plan. We will have the blood work done again to follow up to be sure it does return to normal. We do not want damage occurring because of elevated ESR all the time, nor do we want to possibly miss a more serious condition (if his rate doesn’t fall). However, if it does return to normal, we will consider that the trend and we will continue on with our home treatment, unless he is very severe or has a change in his pattern.
Day 4: Fever has broken
As we noticed at the beginning of this episode it is mild, and Bubba has no fever today. Now we can spend a few days recovering his appetite and sleep, and happy Bubba will be back by the weekend.