The worst one so far!

The actual fever didn't start until August 2nd. I knew by the way he was acting, and by the fact that his fever was already at 103.5 during the first 24 hours, it was going to be a bad one. Usually his fever peeks around the third day, and then starts to decrease. Most of the time it doesn't go over 104, so it worried me that it was so high already, especially with us giving him medication every 4 hours.
I also knew that we would have to get blood work done this time around, and since it started on Saturday, I knew that day 3 would be on Monday- not real good timing.

(My sweet baby sleeping with a 104.5 fever)

On Monday I took him to the Dr. (we couldn't see his normal one because she doesn't work on Mondays). I called before heading there and told them that we needed to come in for blood work that was prescribed by our Dr. at Tulane. They told me I HAD to have an appointment with a Dr. to get it done. I made sure they looked it up and had the orders, and then asked (to make sure) that they were able to take blood for these three specific things...CBC, ESR and CRP. They said yes, absolutely.

Between the time I called and made the appointment and the actual appointment, Rowan woke up (he tends to sleep later some days when he has been up and down all night). He was clingy and uncomfortable. I held him on the couch while he got some fluids into him. I noticed that his toes looked blue and felt a little cool to the touch. I asked him if he was cold. He said yes, even though his fever was pretty high. I covered him with a blanket and continued to watch him. About 2 minutes later, his fingers started turning blue too. Of course this really freaked me out! My husband took him outside and tried to get his blood flowing, thinking that maybe the way I was holding him cut off the blood flow. We have been told that Rowan has a slight heart murmur, so I was concerned that something was wrong with his heart. I tried to call his ped., but they kept saying, "we don't know if it's part of the syndrome or not. You need to call his other doctor and ask him." Finally I asked them what they would to say to any other mother that called and said their child had a high fever and was lethargic with blue toes and fingers. She said- "I would tell them to go to the ER." It angered me that she wouldn't have said that initially.

(Bad pictures, but you can kind of see the blue tint)

After about 10 minutes, the color returned to both his hands and feet. I emailed our Dr. from Tulane to ask if this is a possible symptom of PFAPA. I also called and left a message with his nurse. She called back and said to take him to a Dr, to get him checked out anyway. I was pulling into the peds office when she called back.
So here we are at the Dr., with a very high fever and a miserable, very sick child, waiting for blood work. Typically he is great at the Dr. However, this time he was so upset. He cried the whole time and wanted me to hold him. I felt so bad. When the Dr. came in the room, he asked what was going on. Due to Rowans crying, it was difficult to keep a conversation going, but I let him know that we needed blood work done and told him about the blue toes and fingers. He said that he's seen "thousands of PFAPA cases, and that kids just out grow it." He acted like it was no big deal, and that the symptoms were not serious. This is the FIRST time anyone in that office has mentioned PFAPA. Going in there the million times before, you would think someone would have mentioned something before our PIDS sent the possible diagnosis over! Right?? Hmmmm.....
He checked Rowan out and said he was unable to do the blood work in the office, but that he would send me to a lab that could. I was SOOO mad. I called and specifically asked if it could be done there, and they said YES! While I was trying to process this information (with a screaming baby), the Dr said, I want to do a strep test on him because I have seen a couple of kids with it recently. Before I could even object, he was swabbing his throat! I still feel bad about not responding fast enough to tell him NO! I felt like he was just doing whatever he could to get $$! Of course it came back negative, and after all that we still had to go somewhere else to get this blood work done.  He did say that sometimes with a high fever your limbs can turn blue because all the blood is going to cool down/save your vital organs. I don't know how much I believe that. His fingers and toes turned blue at least 3 more times throughout this episode.
We ended up getting the blood work done at a lab down the road. They were wonderful! I was so hard to see him go through that, knowing that he was already so sick. His fever was at 104.3 when we got the blood work done. The only thing that helped was knowing that they should defiantly see what they need to with his fever being so high.
When we got home that afternoon, I noticed his neck looked swollen. Now he has had swollen lymph nodes before, but this was terrible! They were like golf balls, and were red like they had fever in them.

(Swollen under his ear)

I kept thinking that maybe that Dr that did the strep test stirred something up in there, or made something worse. Mommy guilt- again.
Monday night was a rough one. Most nights are bad. Neither of us gets a lot of sleep . I have to set my alarm every 4 hours to wake up and give him meds. He is up and down a lot in-between those times crying and hurting. His fever got up to 104.5  that night. It broke my heart.

(His paleness makes his sister look tan- they love to play together in her bed!)

Tuesday (day 4) his fever started going down (103). Wednesday, down another degree (102). Thursday his fever started to go back up (104.2)! What is going on???? This was so NOT our normal pattern. Thursday afternoon he developed a rash on his face, arms and legs. Nothing on his trunk. It almost looked like a bunch of mosquito bites. Of course, I called the ped. again and said that I wanted to bring him in. I described the rash and told them his fever was starting to spike again. Because it was 30 minutes from closing time, they told me to just "keep and eye on it" and if things were still bad in the AM to make an appointment. Again- another mommy fail. I should have listened to my instincts and demand to come in. I couldn't sleep Thursday night. I knew something else was going on. He was complaining of all the normal pains, but also that the back of his head was hurting. The rash was worse when his fever spiked.

(Rash on his arms, legs and face)

8:00 AM Friday morning, I called and made an 8:45 apt. He was so sick. He was very pale and lethargic. He had dark circles under his eyes and was crying all morning. When the Dr (our regular one) saw him, she realized just how sick he was. They took blood again and did a throat culture. The blood work showed that he had a bacterial infection on top of the PFAPA. I knew something wasn't right. He was so sick that he fell asleep on me (the second time to ever fall asleep in public- even when he was an infant he wouldn't do that). His fever started spiking while we were there, so they gave him Motrin, and then a dose of Prednisone (which we were supposed to do at the next episode) 2mg/kg, and a big dose/shot of antibiotics- Rocephin 750mg. They also gave us a Rx for Suprax 200 mg/5. (I called later to get the names and doses of each medication for my records.)
His fever broke in about 2 hours. Lymp nodes went down and rash started clearing up. BUT the behavior/rage from the Prednisone was terrible!!!!! (Roid-rage in next post)
By the way- We are getting a new pediatrician!
**If you are reading this and have questions because I am not clear enough, please ask. There is so much going through my head, and with the lack of sleep this last week- sometimes I don't make sense.