Fever Free

So, I have waited a year to post this, for fear that I might cause it to change.

Last August I took Rowan to the most amazing Chiropractor. She knew our story, and had actually spoken to others, in her profession, about certain adjustments being a successful "cure" to PFAPA. We took him twice that first month, and when the time came for the fever to return, I held my breath. That first month the same symptoms started- joint pain, mouth sores, irritability, nausea, fever. I was so upset, thinking that it wasn't going to work. However, his fever never went over 102! I started second-guessing myself, thinking maybe it was a virus or something else. It was such a mild episode. He was back to "normal" and acting like himself in three days. THREE DAYS!!! I started to have hope! I took him back the next month, and when it was time for another episode, it never came. Same the next month, and the next, and then our amazing Dr. suggested that we come in once a month for "maintenance." Yep, that's right... we now only go once a month, and he absolutely LOVES going.

Rowan has been fever free for an entire year!

I write that statement with so many emotions. I never thought I would be able to. I remember that when we were in the middle of an episode, it felt like the rest of the world just kept going, and we were stuck in this horrible dream state. I was terrified thinking about his lack of weight gain, his health, his mental wellbeing, and what the future held. I KNOW how blessed we are to have found something that works for him. I STILL wait every month to see if it comes. I also know that it may not last forever. However, for now, I can breathe a little easier when the time passes, and the fever doesn't come.
I do believe that he had fever-less episodes, some more painful than others. He has had ONE small fever since they stopped- and that was this past month, when all three of my little ones caught hand, foot, mouth. His was the most mild out of the three.
Of course I have questioned wether it was just a huge coincidence, and he just happened to outgrow it at that time, but I have to believe that chiropractic care is what has helped him. He is a different child. He is happy and spunky, even a little feisty at times! He has gained weight and is growing like a weed. His night terrors have become almost non existent. He still complains about knee pain around the time he would have had an episode, but now we get his knee adjusted as well, and it helps so much.
I wanted to share this with all the moms, dads, grandparents, family members and friends of those who suffer with PFAPA. Maybe this is the answer for your loved one too. It can't hurt to try. It is the LEAST intrusive thing we have tried. I only wish we would have tried it earlier. I promise to continue to keep posting, although it hopefully will be uneventful posts from now on. Praying you all get your "cure" soon too.


Here are some pics of my little guy and his fever free days!



Playing outside in the water to beat this terrible heat!


Waiting for dinner while on our beach vacation! It was amazing to be able to plan a vacation without worrying about timing.


Heading to breakfast while on our beach vacation!


Getting an adjustment from our amazing Chiropractor and wonderful friend- after his birthday party! She fixed his knee after a fun filled day of water sliding. Look how relaxed he is! She is our angel!


Rowan hanging out with his sister and brother. So very thankful for this!

It's back....

I am so very upset to write this. On Monday, Rowan's fever came back. I was so not prepared for it. I guess I got too comfortable in our "new normal," and forgot just how rough it was on my little guy. We were riding home from the grocery store, and he started complaining of his knee hurting. He was pointing to the back of his knee and kind of whining. My first thought was, "oh, please no!" When we got home, he started feeling like he was going to get sick, and ended up throwing up twice. I took his temperature and it was starting to spike. I felt like I was going to get sick myself. I KNEW what it was, but was so hopeful that it was something else. I gave him some meds and had him rest on the couch. He woke up on Tuesday complaining of his throat hurting. I ended up taking him to the doctor just to check everything. I kept hoping for strep or something like that. Terrible, I know. Everything came back negative, again. We had the same pattern as before- fever spiked its highest on day 3 (never went above 103 this time- so thankful), and it took until yesterday (Friday) to come all the way down. He had sleepless nights the entire time- with lots of night terrors and screaming.
I have felt like crying so many times these last few days (could be the pregnancy hormones), but I know it won't do anything to help my little guy out. I am thankful that his language has evolved so much in the last 7 months, and he is able to communicate with us so much more. He can now tell us what is hurting and how it feels. He can tell us if he feels like he is going to get sick, or if he is starting to feel bad before the fever gets too high.
Last night I was talking to my husband, and we realized that for the 7 months we were without PFAPA, he was such a happy, healthy, sweet and compliant boy. This last week, he has been very agitated and aggressive. Lots of screaming and crying and defiance. We know our Rowan, and this was not him. It made me so sad to see him having to deal with this physically and emotionally. I know it's still confusing to him, and he doesn't understand what is happening (neither do I). I have no idea what triggered it to come back, or what triggered it to go away. I'm thankful that we had those months without it, and pray that this was a one time thing. Of course, I have no idea if it will return to every month or every other month, or be something totally different. We just have to wait and see what the future holds.
I am taking him to a good friend/chiropractor on Thursday to see if she might be able to help him. She learned of some possible successful "cures" and is eager to share. So very thankful for her. We have not had his blood checked again to see how it clots, but based on our results from before, surgery is not an option at this time. We also refuse to use Prednisone again. So the alternative medicine/ natural route is our first choice. I believe whole heartedly in alternative medicine- have had so much success with it myself. Please pray for our sweet Rowan.

 My clingy guy- resting on "the belly." Sweet sister in the back.

Back to normal and ready to play!

Fever free

I think I have been waiting to write this, because I was afraid that if I did, it wouldn't be true! Rowan has been fever free since the last post in December. He still seems to get some fever less episodes (fussy, clingy, tummy hurting, legs hurting, etc.), but nothing compared to what he had before. I continue to give him the children's chewable pepto when his tummy hurts, and it seems to help. I don't know if he has miraculously outgrown this, or if we are on a hiatus, but I am so very thankful that it's not something he is suffering with at the moment.
Rowan turns three today. I can't believe my little guys is three! I feel like in the last 6 months, without these fevers, he has been able to excell to new developmental heights! He is doing so well, and we are so very proud of him. We have been paying close attention to my daughter, being that she is the age he was, when we began to see a pattern. She has been experiencing some mid to high fevers, but so far we believe there have been underlying causes. Praying she continues to stay healthy, and our new little one on the way, will be fever free as well.
Thank you to all who prayed so hard for our little guy. Please continue to do so. We will continue to send prayers out to all who continue to deal with the hardships of PFAPA. I will continue to update this blog every few months, hopefully with positive news. Continue to have hope, moms and dads. It looks like there is a chance it can be outgrown earlier than the second decade of life! Until next time...

December fever

I really thought we may skip the fever this month, but it just decided to come a week late. As hard as it is on Rowan, I was fully prepared for a really rough time. However, this time the fever only lasted two days!! On Tuesday I took him to MDO, and let them know (again) that they may need to keep an eye on him. I told them the same thing the week before. They are so very diligent about keeping tabs on him throughout the school day. So very thankful for them. They called me around 11:30 and said he was running a fever 101.1. I told them I was on my way. Rowan was exhausted when I picked him up. I gave him Motrin as soon as we got home, and without eating lunch, he asked to go to bed. He slept for a few hours, and was just kind of "blah" until bed time. He wouldn't eat anything, and hardly drank. Same as before. However, this episode, he complained of his tummy hurting for almost two weeks before the fever came on.
So that night I was waking every 3-4 hours to give him meds and check his temp. About 10 minutes before my 4 AM alarm, he woke up screaming. When I got into his room, he said he didn't feel well and needed the "orange medicine" (Motrin). I felt him and knew it had spiked, so I gave him the meds before even checking his temp. Once I checked it, it was 104.6. I picked him up to take his sleep sack off, and he was soaking wet. I asked him why he was wet, and he tried to explain that he threw up. ("I drooled out of my mouth, mommy").  Poor baby. I don't know if it was the fever, or that he was anxious, but as Jerry held him and I cleaned his bed, he was talking SO loud! He wanted to play with his trains and ask friends to come over. I think he may have been a little delirious. It's not funny, but it was kind of funny... =)
The next morning he woke up at 6AM- not his typical time, and only stayed awake until about 9. He slept well for that nap. His temp kind of hung around 103 Wednesday until about 3:30. He said his tummy was hurting, and he kept asking for milk. I knew that milk and fevers don't mix well together, but he needed something in his tummy. I offered him some kids chewable Pepto-Bismol (not really thinking he would take it), and he accepted. In about 30 minutes his fever was GONE! Yes- GONE!!!! I have NO idea what happened, but I am so very thankful. Could it be that it was just a short episode? Could the Pepto have caused it to go away? I know that the Tagament that the Dr suggested is an antacid. How wonderful would it be if giving him a chewable Pepto took the fevers away? I guess we will see if/when the next one comes on. Could it possibly be that he is starting to outgrow this already? Maybe it is our Christmas miracle.
I feel great writing this post, because maybe there is something that I can contribute to the PFAPA community! Has anyone else tried Pepto during the peak of an episode? So thankful for my happy and healthy little guy. Excited that he will be able to enjoy this holiday season.
Merry Christmas and a very blessed and Happy New Year to all!

 On our way home from picking him up early from MDO!

 My sick baby on the couch....Stayed here most of the day..

His first drop off playdate! So glad he felt well enough to do this! He had a blast!

Surgery Canceled

I have mixed emotions about the fact that Rowan's surgery has been canceled. I know that it happened for a reason, and that God is looking out for him. However, I also know that our last episode, is now not our last. I hate that he will have to go through another one again, but at least I know what to expect from it.
On November 5th, my daughters 1st birthday, we got a call from the PENT's office. They said that Rowan's blood work came back off, and that we would have to cancel the surgery. I had to ask her to repeat herself because I thought I heard her wrong. The blood work that they take is to show how well their blood clots. They want to make sure there will be no complication during the surgery. Both of Rowan's numbers came back slightly high. That means that, at this time, his blood doesn't clot fast enough. Of course we don't want him to bleed out or anything, so I am so very thankful that they do this test. A few things could cause the numbers to be elevated- giving him Motrin, eating food with Omega 3 or fish oil, or possibly fighting something else. I was VERY careful not to give him Motrin, or feed him anything on the list, for fear of causing a cancelation.
So, our next step is to wait 3 weeks and check his blood again. Of course, that really means we have to wait until 2 weeks after his next episode because he can't have the Motrin in his system for two weeks before the blood work.
He has his "runny nose, coughing thing" again. It happens between each episode -like clock work. I have no idea if it is related to the PFAPA, or if he is just getting sick between them. For the last 3 or 4 episodes though, it has happened. Ever since he went from every 4 to every 8 weeks.
His next one is supposed to happen early December. Our 9 year anniversary and my birthday will be during that time. We are trying to plan around it. Our sweet babies will always come first. Maybe he will skip it this time......I pray this prayer before each one.
Until then.......

Surgery Scheduled

We have a surgery date! November 13th, which just so happens to be my older brothers birthday! Praying that it means this is a lucky date!
A few days after Rowan's latest fever, he started complaining of the back of his knees hurting. I thought that maybe it had something to do with the nodes behind his knees, and that maybe there was some left over swelling behind them. He was limping a little, but he still seemed like he was in good spirits. While playing outside, his right knee just gave out on him, and he collapsed! Of course we became worried even more so, but with everything he deals with, I thought maybe he was turning a weird way, and tripped. However, a few hours later, he was just standing and his knee did the same thing, and he fell to the ground. There were some tears (from both of us), but super dad came to the rescue and made everyone feel better. (I do have the most wonderful husband.) I called the Dr., and of course it was after hours. They said it could be related to PFAPA, or it could be something totally different. They wanted us to bring him in on Monday (this was Saturday afternoon). For the next two days he woke up screaming from his naps, complaining of pain in his knees, then it moved to his ankles and then to his hips. Monday we had the apt with the Pediatric ENT, which lasted until nap time, so we were not able to take him to the Dr. Tuesday he woke up and didn't seem to be in any pain. When I asked him, he said he didn't hurt, and was ready to go to school. He kind of went back and forth through the week, and I made an apt for Friday afternoon. Some how I forgot about the apt, and missed it!!!! I used to NEVER forget about important things like that. I think maybe I gave some of my brain to each of the kids during pregnancy, which didn't leave much for me! ;)
I did end up taking him this past Monday, and the Dr. said everything looked fine. I have no idea if it was related to PFAPA, or if it may have been something called Toxic Synovitis. Either way, it seems to be gone now, and he is back to bouncing off the walls! If anyone else has experienced this with PFAPA, please let me know. At least I can be prepared for it if we have another episode. HOPEFULLY, we won't have another one though!!!
According to medical studies, and our PIDS, the studies range from 66% to 100% cure rate, after having the tonsillectomy and adenoidectomy. Those are pretty good odds! Of course, before we set a surgery date, we met with the ENT, discussed at length with her PFAPA, and did A LOT of research. We contacted all of our Dr.'s and asked if they would look up studies regarding the surgery and PFAPA (because they have access to a lot more than we do), so that we were armed with all the knowledge that we could be before making the decision. We also researched other possible syndromes on our own, to see if he could possibly fit into anything else. We wanted to make sure that we were not deciding to take out something that he would need, if he actually had a different syndrome. After discussing it with each other, our Dr.'s and our families, we decided to go ahead and schedule it.
The only real concern about them doing it on someone Rowan's age is dehydration. So I am armed and ready to push the fluids (already). I have dreams about making him drink. I'm sure I will until it is over. They are going to try and make it an outpatient thing, so he can rest at home. He will be on a soft diet for two weeks, with no vigorous activity (yeah, right). From what I hear, they are up and moving that afternoon- like nothing happened! =)
Lots of prayers please! I know many families have been through this surgery. I am just praying that it takes the PFAPA away. I will continue to update anyone who wants to read, even if/when the fevers go away!
Happy Halloween!!!!

October Fever

"Me hurt mommy, me hurt."
"Me just scared mommy."
Two phrases that broke my heart into even smaller pieces this episode.
It seems like with each episode, he gets more symptoms. This time he had a runny nose, cough and started throwing up... A LOT. My poor baby. He still gets the sores in his mouth, red painful throat, huge lymph nodes in his neck and possibly groin, tummy pain, joint pain, rash and high fevers.
Because it is the beginning of flu/virus season, and because of all of these scary viruses (Ebola and EV-D68), I decided to take him to the Dr the first day he started running fever. He also had the runny nose, coughing and sneezing, so I wanted to make sure it wasn't something else. It wasn't.
I know in the last post, I said that we would try Tagamet/Cimetidine, but after running it by our pediatrician and speaking with a very trusted pharmacist, we felt like the possible side effects didn't seem worth it. It seems like Rowan may have his mommy's crazy neurological system, which causes him to get EVERY side effect, and then some, from medications. I did find out that Tagamet is the pill form, but if you want the liquid form, you have to have a Rx. I even had the pill crushed up and in apple sauce, then decided not to give it to him. I believe there is only a 20% chance it will help anyway.
Again, day 3 was the worst. He was really in a lot of pain this time- or maybe he always has been, but couldn't voice it as well as he could this time. He didn't eat much this episode, and on day 3 he stopped drinking and eating all together. Around dinner time he asked for a "happy dinner"- which is a happy meal (no judgement, please! ;) ). Of course I would get him anything, if he was willing to eat it. I started giving him meds every 3 hours instead of 4 this time. His fevers have started spiking after 3 now. I knew we had 30 minutes to get to McDonalds and back before I could give him some more medicine. I took his temp before we left, and it was around the 102.5 mark. That's kind of where it hangs out on day 3 until it gets close to the 3 hour mark. So, we packed up and drove to get a "happy dinner." He asked if he could have the apple juice to drink on the way back. OF COURSE!!! I was thrilled! He wanted food and drink!! Thats where it took a turn. About half way back home, he started throwing up- over and over and over. I pulled the car over on the side of the road, because he couldn't catch his breath. He was strapped down in his carseat, and couldn't lean forward. I was afraid he would choke. Here I am, running like a mad woman around to the other side of the car, still in my "sweats and flip flops," with all of this work traffic passing. My daughter got really upset, because she knew something was wrong with her brother, (she just started that this episode- I love how close they are now!) and lost it! So she is screaming and crying, and he is throwing up all of himself and the car and I am trying not to panic. I loosened the straps so he could lean forward, and of course I had NOTHING in the car that he could throw up into. Once he stopped, I wiped him off the best I could, calmed him down the best I could, and had to tighten the straps up again to drive the rest of the way home. NEVER again will I go get a "happy dinner" on day 3! I thought that would be the worst part.....
Once we got home and I got both kids out of the car, (the carseat, and car were just going to have to wait to be cleaned) I rushed Rowan to the shower to wash him off. He was crying and shaking. I knew his fever was starting to spike. His feet, hands and lips turned blue and he was shaking so badly. I rushed to get him dressed and warm, then get the meds. I know it sounds like it doesn't make sense to get him warm, but his body was chilled from sitting in the wet throw up and was trying to "warm itself up," which cause his fever to go even higher. Even after giving him the meds, it was still creeping up. We got to almost 105. I called my wonderful neighbor to help me because my daughter was still upset, Rowan was telling me how scared he was, and I was trying not to show how terrified I was. So thankful to have such wonderful neighbors and live in such a great place.
Rowan had so much heat coming off of this little torso and head that while I was holding him, I was sweating. He couldn't stop shaking, and I promised him I wouldn't put him down until he wanted me to. My poor, poor baby. About 30 minutes after giving him the medicine, he threw it up. Now what do I do????? I didn't want to over medicate him, and I had no idea how much had actually gotten into his system. I knew that his fever was continuing to go up, so I gave him more. Thankfully that extra dose made it start coming down, and by 8:30, it broke! I checked him every hour. His little body was so very exhausted. I was terrified that he would start throwing up in his sleep- so I watched him- all night. At 2:30 am, it spiked again, and he started throwing up in his bed. I was just walking into his room when he started. So thankful that The Lord directed me into the room at that moment. My little guy needed me, and I was right there. He kept saying. "I'm awake mommy, I'm awake!" (I don't think he really was all that awake- and that really scares me). He actually finished throwing up- in his bed, because why move him when its already all over the place, and then laid back down in it!!!! How terrifying is that??? If I had been asleep or not heard him....I don't even want to go there....
His fever broke 3 times before this episode ended. Yesterday was a day of recovery. He took an almost 4 hour nap, and today he is back to himself and at MDO! It is amazing how quickly it starts and stops. I called and scheduled an appointment with a pediatric ENT for Monday morning. I am ready to start being proactive and push for this surgery. I don't think medication is an option for Rowan. If the surgery doesn't stop it, we will look at other options, but with each episode being worse than the one before it, I can't not push for it.
I did find a new mommy friend that has gone through the same thing with her son. Small world- my husband just happened to find a company out of Atlanta to do some work with the company he works for, and the VP of that company has a son who was diagnosed with PFAPA about 12 years ago. I don't know how they started talking about it, but I am so thankful they did. He gave us his wife's number, and I called her today. It was so nice to talk to someone who knows EXACTLY what we are going through. AND.... her son had the surgery and has been fever free since!!!! She said that immediately after the surgery, he turned into a different child! Praise The Lord!!! I pray the same thing happens for  our little guy.
Until Monday.......

Our little guy on Day 1- Still in Great spirits, ready for the Saints game- His eyes change with the episodes. It's hard to describe, but you can see it in the other pictures too. Another sign one is coming on.

 Day 3- my poor guy had very little energy. This was taken right before we went to get the dreaded "happy dinner"- Which he NEVER ate, by the way.

 Part of the rash that was left over- Day 4 (recoup day this go round)

 Day 4 again- You can see how his face has some rash and his poor eyes look so different!

I just love him so. I am so blessed with two amazing babies!!!