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!
Jennifer and Jerry, Rowan and your family are in our prayers. Please call, text, or knock if we can help in any way. Matt & Neely
ReplyDeleteI am curious to know what has happened since seeing a chiropractor. My son also has PFAPA and we just went 5 months without an episode to have what we think are 2 episodes this month! This time his fever is even higher, 104, and we are looking for alternatives. Considering a tonsillectomy or other ideas. Thanks!
ReplyDeleteI'm so sorry I have not updated the blog. Every time I sit to do so, one of my little ones needs something! Since going to the chiropractor, we have been fever free!! The first month we did have a very mild episode, with a low grade fever- never went over 102. I almost wondered if it might have been a virus or something, but we all know what it was. :)
DeleteWe started at every two weeks, but now he gets adjusted once a month. The best part is that he loves to go!! I pray that your little one has the same results. I can ask what she specifically adjusts if you would like me to, but I believe it's the C1 and C2 vertebrae. Hope this helps! Good luck and hugs for your little one.
Hi, our now five year old went for about seven months without an episode. However, they started back this past January. He missed zero days during the fall (prek full day) but missed a total of 10 from January to June. They seem to not be as "regular" as before in that we can't predict when they will happen like we were able to before. I am nervous when he starts school. Our ID doc suggested the steroid. What was your experience? So far we are just using Motrin and waiting out the episodes. I am also starting him on extra vitamins (tart cherry & vitamin d). I see you had great success with the chiro. I may do this as well.
ReplyDeleteI know we emailed or chatted in a past post. We just got an official diagnosis of PFAPA. My id doc says as a specialist she sees 2-3 cases per month.
DeleteWe also have now seen the mouth sores, white spots on the tonsils, "the classic" signs.
It just sucks when he is not feeling well.