Here's an update from my sister, Ashley on Isabela ~ thanks for your continued prayers!
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Thanks to all of you who have asked and prayed! Just wanted to let you know about Isabela's appointment today. Dr. Cleary said that Isabela looked great! Although it is not typical for ones with PFAPA to stop for such a long time with fever episodes, he still feels confident with his diagnosis. He said since nothing else has changed and she's not showing any other signs or symptoms he really doesn't feel that we need to explore other things. We talked about long term affects and some odd characteristics of PFAPA and he was great to explain a little more about it, so we feel more knowledgeable about it. So overall, his news was good. We did discuss our 3 options...1)continue to treat with motrin and hope that this too will phase out, 2)we can start the steroids, which isn't something he recommended because of long term effects of steroid usage or 3)remove her tonsils. As odd as this may sound, there have been studies that have proven that removing childrens' tonsils out "cures" PFAPA. He said there is no explanation for this, but in studies it has proven to be 100% effective. This is strange because PFAPA has nothing to do with tonsils, but for whatever reason works. So, after discussing these with him, we have decided to wait it out for a little bit. Maybe the next few months will tell us more. If her fever episodes persist, than we'll probably go forward with removing her tonsils. So, continue to pray for Isabela, and for me. Although this is not fun for her, it is so draining for me. Of course you always worry about your little ones and never want to see them sick! We'll keep you updated as the next few months hopefully will tell us more. Ashley
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Thanks to all of you who have asked and prayed! Just wanted to let you know about Isabela's appointment today. Dr. Cleary said that Isabela looked great! Although it is not typical for ones with PFAPA to stop for such a long time with fever episodes, he still feels confident with his diagnosis. He said since nothing else has changed and she's not showing any other signs or symptoms he really doesn't feel that we need to explore other things. We talked about long term affects and some odd characteristics of PFAPA and he was great to explain a little more about it, so we feel more knowledgeable about it. So overall, his news was good. We did discuss our 3 options...1)continue to treat with motrin and hope that this too will phase out, 2)we can start the steroids, which isn't something he recommended because of long term effects of steroid usage or 3)remove her tonsils. As odd as this may sound, there have been studies that have proven that removing childrens' tonsils out "cures" PFAPA. He said there is no explanation for this, but in studies it has proven to be 100% effective. This is strange because PFAPA has nothing to do with tonsils, but for whatever reason works. So, after discussing these with him, we have decided to wait it out for a little bit. Maybe the next few months will tell us more. If her fever episodes persist, than we'll probably go forward with removing her tonsils. So, continue to pray for Isabela, and for me. Although this is not fun for her, it is so draining for me. Of course you always worry about your little ones and never want to see them sick! We'll keep you updated as the next few months hopefully will tell us more. Ashley
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