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!!!!
Thursday, October 23, 2014
Thursday, October 9, 2014
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!
"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.......
I just love him so. I am so blessed with two amazing babies!!!
Thursday, October 2, 2014
Skipped again/Diagnosis
(Ok, so I just spent 45 minutes writing this post, and because the power was out, when I tried to post it, it deleted it!!!- So I'm going to try to write it again.... without being really mad at the internet!)
So, either we are on an every eight week schedule, or we skipped this last fever again. It started just like normal, fussiness, low fever, swollen lymph nodes in his neck, but then he caught a little virus from school, and the fever stopped. I know that it was a virus this time, because he passed it to his sister. (At least I think it was a virus, and not some weird part of PFAPA that happens every other month).
His PIDS doctor called a couple of weeks ago about the results of Rowan's blood work. He said that from what he could see of the blood work, and because of the fever stopping with the Prednisone, he feels pretty confident giving Rowan an official PFAPA diagnosis. I feel a little relief with the "official" diagnosis. At least it gives me something to really research and focus on, "officially." The Dr. did say that there is a very, very slight possibility that it could be something called Cyclic Neutropenia. He said that he would speak with Rowan's Ped., so that he can keep an eye out, just in case.
Since Rowan had such a terrible reaction to the Prednisone (which is the medicine most used with PFAPA), we ALL decided it was best not to go that route again. The PIDS said that Prednisone can cause Psychosis, in rare instances, and it sounded like that may have been what happened to Rowan. Of course it is difficult to tell if a two year old has psychosis, being that they are "out of touch with reality/have crazy meltdowns throughout their twos anyway! ;) The Dr. said that there is another medication that can be used called Tagamet (or Cimetidine). It is basically a medication that inhibits stomach acid production and is used mostly for the treatment of heartburn and stomach ulcers. For some reason it seems to help with PFAPA too. I guess it make sense with the mouth ulcers and all. Rowan tends to complain of his tummy hurting during the episode, so maybe he has ulcers in there too. =(
The PIDS said that we can give him the Tagamet one of two ways. We can give it to him twice a day for 6 months to see if it decreases the intensity or stops the episodes all together, and then stop after the 6 months to see if they return. Or we can give it to him when an episode starts to see if it decreases intensity, or stops it. I think we will try the second way first!
I still feel like I am in denial sometimes, and that we are wrong. Maybe it is just a bunch of viruses that he is picking up. Then reality hits, and I know that it can't be a bunch of viruses- it's just too scheduled and exact. Plus, we now have the proof we needed from the blood work and the fever going away with the Prednisone. Things seem so great, and run so smoothly in-between episodes (as smooth as they can with a two year old and a 10 month old), that I almost forget about them. I actually started thinking about considering trying for #3!! And then I remember what it is like when he is sick. He needs so much attention, that I already feel like I can't give my little girl what she needs, while an episode is going on.
Of course another option would be to contact a Pediatric ENT and see what we need to do to schedule the surgery. I know that this is an invasive procedure, and our PIDS thinks of it as a last resort. He believes that one needs their tonsils to fight off "infectious diseases," and he of all people knows! I guess I keep hoping that he will just grow out of it, and that it won't return. I know that if/when the next episode comes, I will be making all kinds of phone calls. I guess it's kind of like labor- you forget what it's all about, until you are in the middle of it again! ;)
Rowan's fever tends to come at the beginning of the month, so right now we are just waiting. He is really doing great, and developing on schedule (or ahead - in my opinion ;)- don't all mom's think that!). Based on what happened, and how bad it got the last time he skipped a month, I am worried about what this one will bring. I am checking him every couple of hours, and watching for a change in his behavior. So far he is our typical, rowdy two year old- that decided not to take a nap today, but instead pull his wet diaper apart and throw the insides all over his room! I am so thankful for our healthy little guy. He's almost 30lbs now!!! One of the other benefits to skipping a month.
Here are some pics of our guy feeling great!
So, either we are on an every eight week schedule, or we skipped this last fever again. It started just like normal, fussiness, low fever, swollen lymph nodes in his neck, but then he caught a little virus from school, and the fever stopped. I know that it was a virus this time, because he passed it to his sister. (At least I think it was a virus, and not some weird part of PFAPA that happens every other month).
His PIDS doctor called a couple of weeks ago about the results of Rowan's blood work. He said that from what he could see of the blood work, and because of the fever stopping with the Prednisone, he feels pretty confident giving Rowan an official PFAPA diagnosis. I feel a little relief with the "official" diagnosis. At least it gives me something to really research and focus on, "officially." The Dr. did say that there is a very, very slight possibility that it could be something called Cyclic Neutropenia. He said that he would speak with Rowan's Ped., so that he can keep an eye out, just in case.
Since Rowan had such a terrible reaction to the Prednisone (which is the medicine most used with PFAPA), we ALL decided it was best not to go that route again. The PIDS said that Prednisone can cause Psychosis, in rare instances, and it sounded like that may have been what happened to Rowan. Of course it is difficult to tell if a two year old has psychosis, being that they are "out of touch with reality/have crazy meltdowns throughout their twos anyway! ;) The Dr. said that there is another medication that can be used called Tagamet (or Cimetidine). It is basically a medication that inhibits stomach acid production and is used mostly for the treatment of heartburn and stomach ulcers. For some reason it seems to help with PFAPA too. I guess it make sense with the mouth ulcers and all. Rowan tends to complain of his tummy hurting during the episode, so maybe he has ulcers in there too. =(
The PIDS said that we can give him the Tagamet one of two ways. We can give it to him twice a day for 6 months to see if it decreases the intensity or stops the episodes all together, and then stop after the 6 months to see if they return. Or we can give it to him when an episode starts to see if it decreases intensity, or stops it. I think we will try the second way first!
I still feel like I am in denial sometimes, and that we are wrong. Maybe it is just a bunch of viruses that he is picking up. Then reality hits, and I know that it can't be a bunch of viruses- it's just too scheduled and exact. Plus, we now have the proof we needed from the blood work and the fever going away with the Prednisone. Things seem so great, and run so smoothly in-between episodes (as smooth as they can with a two year old and a 10 month old), that I almost forget about them. I actually started thinking about considering trying for #3!! And then I remember what it is like when he is sick. He needs so much attention, that I already feel like I can't give my little girl what she needs, while an episode is going on.
Of course another option would be to contact a Pediatric ENT and see what we need to do to schedule the surgery. I know that this is an invasive procedure, and our PIDS thinks of it as a last resort. He believes that one needs their tonsils to fight off "infectious diseases," and he of all people knows! I guess I keep hoping that he will just grow out of it, and that it won't return. I know that if/when the next episode comes, I will be making all kinds of phone calls. I guess it's kind of like labor- you forget what it's all about, until you are in the middle of it again! ;)
Rowan's fever tends to come at the beginning of the month, so right now we are just waiting. He is really doing great, and developing on schedule (or ahead - in my opinion ;)- don't all mom's think that!). Based on what happened, and how bad it got the last time he skipped a month, I am worried about what this one will bring. I am checking him every couple of hours, and watching for a change in his behavior. So far he is our typical, rowdy two year old- that decided not to take a nap today, but instead pull his wet diaper apart and throw the insides all over his room! I am so thankful for our healthy little guy. He's almost 30lbs now!!! One of the other benefits to skipping a month.
Here are some pics of our guy feeling great!
Learning all about what Pa does!
Hanging with mommy and JJ!
Loves his sister so much!!
My blue eyed babies!
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