4 years since the last known episode and everything is fine

I can’ t believe it’s been more than 4 years since the last known episode of PFAPA and everything is fine.  There is a lot of research I found recently in sci-hub about this syndrome.  50 new studies since the start of 2016 are already there waiting for anyone who want to look more and seek answers.

If anyone has a kid and is worried it is definitely worth having a look at it. In the meantime dont’ worry too much everyting is going to be fine and if you like to try something then please try to stop using cups with reusable straws (that is impossible to clean them properly) and if it works please let me know… just in case – you never know. 🙂

Thanks

 

 

3+ years with no PFAPA!

My daughter is 5 and a half and had no PFAPA episode for more than 3 years. We start school on Monday and fingers crossed she will only get the usual colds that all kids at her age are going through. For anyone out there be patient and everything will go all right.

And don’t forget to let us know if my original advice (Don’t use reusable straws!) was any help to you or if you have noticed something else that might help the symptoms to go away.

Cheers!

Pfapa and straws

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 basics

Periodic fever, aphthous stomatitis, pharyngitis and adenitis or periodic fever aphthous pharyngitis and cervical adenopathy (PFAPA) syndrome is a medical condition, typically starting in young children, in which high fever occurs periodically at intervals of about 3–5 weeks, frequently accompanied by aphtous like ulcers, pharyngitis and/or cervical adenitis (cervical lymphadenopathy). The syndrome was described in 1987 and named two years later.

Pfapa infection from reused straws