Good News!!

We got some good news at our appointment at U of M yesterday. Madelyn was diagnosed with PFAPA syndrome. PFAPA stands for Periodic Fever Adenitis Pharyngitis Apthous Ulcer. It is rare and as of right now there are no known causes or cures but it is not as serious or life threatening as what they previously thought she may have. Huge relief to us!!!! The specialist suggested we try a new medication that some children are having success with so we are starting her on the medication and hoping that it will work in keeping the fevers away. She will take it twice a day until she outgrows them. If it doesn't work then we will have to try the tonsillectomy but that means we will have to make her suffer thru an episode without ibuprofen to get the surgery so we want to try the medication first.
We are hugely relieved that she does not have the more serious disorder and thank you all for your thoughts and prayers!!!

Beautiful Weather

We have beautiful weather today so Madelyn and I took advantage and went outside to play. We discovered that she definitely needs a new bike helmet as you can see!! Most of you probably already know but we are still awaiting word from our pediatrician as to when Madelyn will be seen by the pediatric rheumatologist at U of M. We have been constantly researching the internet (against our doctors advice) and it seems that there are several medications available for children with systemic JRA so we are hopeful that if she is diagnosed with this disorder then we can get it controlled with medications. Skimming the internet can be frustrating though because she seems to have the symptoms of several different autoimmune disorders as they all have very similar symptoms so we know it will be best left up to the doctor to decide. We will keep you all updated when we get more information, in the meantime enjoy this few days of warmer weather!!