My daughter was diagnosed with pfapa syndrome at the age of one. If you are reading this and you have someone in your family with pfapa syndrome, you will know what we went through and there is no need to say anything more about this.
What is important and essential to let everyone know is that since my daughter stopped using cups with Reusable Drinking Straws she is healthy with no periodic fevers for more than 9 months now. Ok, I understand that this is a long shot and claiming that reusable drinking straws were the cause of pfapa to my precious kid lacks credibility.
This is the reason I urge you to try it at home and let me and everybody else know if this makes any difference. You have nothing to lose and you/we may give an alternative to families and kids with pfapa to live a better life with less periodic fevers. We may even convince scientists to check this statement.
From my experience looking after a toddler with pfapa symptoms for more than 2 and a half years I noticed in two occasions that when we stopped using cups with reusable drinking straws that were very difficult to get cleaned thoroughly the episodes stopped. In the first occasion we stopped using these cups for 4 months. During this period we had none episode. Then we started using these cups again and the periodic fevers with aphthous stomatitis, pharyngitis and adenitis returned. I really wasn’t fun using prednisone (prezolon) to treat this condition every 3 or 4 weeks and having an adenotonsillectomy was too drastic. So I went back and checked what we did differently few months ago and there were no pfapa episodes and the only thing we found was that we didn’t use this cups with reusable drinking straws. So for one more time we stopped using them and miraculously the episodes stopped.
Here I want to make something clear. We didn’t stop using “one use straws” but only the ones found in cups with reusable plastic straws that as many of you might know is very difficult if not impossible to get cleaned properly.
We did some basic research on Fungal and bacterial contamination of drinking straws and found only scattered information on the web. The most common microorganisms found in one study (SOTO, Francisco Rafael Martins et al. Fungal and bacterial contamination of drinking straws and their containers in snack bars in a municipality ofSão Paulo state, Brazil. Rev. Nutr. [online]. 2009, vol.22, n.6, pp. 887-894. ISSN 1415-5273. http://dx.doi.org/10.1590/S1415-52732009000600010) were Bacillus cereus 36.6%, Enterococcus spp and Molds/yeasts 3.3%. However this doesn’t include microorganisms that may feed from our kids saliva found in these straws. These microorganisms may have something to do with triggering the pfapa. Other factors like genetics will most definitely play a role. There is also the possibility that each pfapa case is unique so what is working in one case might not work in other.
In any case I look forward for your comments and hopefully this discussion of possible causes of pfapa syndrome might help others on finding something useful about its treatment.
Pfapa 