...since I last updated my blog. Apologies if there are any readers out there!! Lots has happened these past couple of months---
May - June -- Ella continued to experience terribly high temperatures from her episodes that seemed to spread out from every two weeks to every 4-6 weeks. We saw an ENT at the end of May and she had no doubt in her mind that removing Ella's tonsils was our best shot at ending PFAPA or at least lessening the symptoms. She said that temperatures running in the 105-106 every month is not good for Ella. It is time to get aggressive. So thankfully we were able to schedule her T&A for mid June. It was scary and sad to watch Ella go through the surgery and recovery, but let me tell you once those long two weeks were over with she was right back to her bouncy, funny, happy self.
Ella's last fever episode was June 15 (4 days before her surgery). I gave her 2 rounds of prednisone and her fever was gone. Thankfully we were able to go through with the surgery. Since then she has experienced some symptoms - sores in mouth, joint pain, and dark circles under eyes. I do understand that the surgery is not 100% effective, but my biggest prayer is that it ends the fever part. She began her Kindergarten school year and I want it to be a great happy and healthy year for her. Only time will tell but in the meantime we will continue to pray for her and know we have done all that we are humanely possible to do for her.
However, our journey has not ended yet - I will always find ways to help Ella with this syndrome (cherry juice, vitamins, supplements are all still a part of our daily routine). And I will continue to research and 'chat' with other pfapa moms on ways to end/lessen the symptoms of this syndrome for our kids.
My son has what we think it pfapa as well. Just curious, did the tonsillectomy help your daughter?
ReplyDeleteMy daughter has PFAPA as well and I love that she can still go to school (even if she's miserable) but we have been given Prednisone! its a a great medicine to work with this! It cuts the fever in the same time Tyl/Mot will and then it stays away and goes away and stop the PFAPA in its tracks. I'm not sure if you are still struggling but this may be an option for any and all. Beware of the roid rage tho, luckily one dose and its done so it end quickly.
ReplyDelete