Holiday pic

Holiday pic

Tuesday, September 6, 2011

P F A P A aka Kyra's Fevers


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In medical terms, here is a definition from Wikepedia:

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 aphthous ulcerspharyngitis and/or adenitis.
http://en.wikipedia.org/wiki/Periodic_fever,_aphthous_stomatitis,_pharyngitis_and_adenitis


Sounds like a mouthful, doesn't it??  But, alas, this is what Kyra has and suffers from.  They say she will outgrow it eventually.  We have been to a specialist, and I must admit that I need to follow up with her again.  Kyra has been on 2 different kinds of medications for this.   The first medication she had to take when the 'episode' began.  This, however, made the fevers appear closer together...so she got one every 2 weeks instead of every 5-6 weeks.  The second medication she had to take on a daily basis and would eventually make the fevers stop all together.  And so, under false pretenses, they stopped and we stopped with the meds (doctor said she wouldn't need to take meds once they stopped) and we never went back.  And so, we can put a big fat F in the mommy category for that.  Because, obviously the fevers have not stopped.  I don't like taking medication for everything and I didn't want my baby girl to be 'hooked' on a medication.  
another link:
http://my.clevelandclinic.org/disorders/periodic_fever_syndrome/rheumatology_overview.aspx


and just in case you're really interested, here is one more link with information:
http://www.orpha.net/data/patho/GB/uk-PFAPA.pdf


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Todays 'episode' included a high fever (103.1), headache, chills, vomiting (that was fun in the car), and lathargy.  Generally I can tell when one is coming on and I start with the whole motrin/tylenol cycle.  But, when she said she wasn't that hungry this morning, I chalked it up to the 1st day of school jitters.  Guess not...  I just wish she would tell me about the headache...but I think she didn't want to miss out on the first day of school and so she didn't want to tell me.  She hates and always has hated having to miss things b/c if this dam fever.  I hate these fevers and feel so bad for her when they hit.  But she sure is a trooper about it.


And so, we will send her to school tomorrow as long as she is up for it.  These fevers are not contagious...just a pain in the ass!!




Good thought about hubby today: he stopped at BJ's for me in the pouring rain


What makes me happy: 1st Day of School...


What's up tomorrow:  All about Max...  now, there's some funny and not so funny crap!!



8 comments:

  1. Poor Kyra...I never knew she suffered like this 8(

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  2. I hope she has a better day... Tell her I love her to the moon and back:)

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  3. My daughter just got diagnosed w pfapa and I'm scared and sad !!!!

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    1. It can be scary but the parent. But, once we realized the signs and knew how she was and that it would pass, it got better. I know I freaked out at the beginning and it really is hard to see them so 'out of it' for a couple days. Feel free to send me a message if you want to vent or anything!! We still get episodes though they are definitely not as close together as they used to be!!

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  4. hello I just stubled on yr. site. My baby daughter diagnosed with pfapa @ 6mths old. we did everything we could for her, but we never could stop her fevers, jiont pain, eyes & stomach swellings, during her episodes. but Finally after she eached 2yrs. old. He ENT oppped for a tonsil & adniod removeal. We struggled with the idea for 6months . And finally decided to give a try because we had no luck on Predinsone, or cimedine. both had horriable affects on her. so we had to stopp useing them. However I am s Thankful we went through with the surgury. It has solved evry single issue of Pfapa!!!. she has been fever free since nov. 2010. I know alot of parents are very sceapicle, bout surgeruy, but when u have no other option but to watch and medicate all the time. I think surgry was btter than all that motrin & tyenol evry 4 hrs. and it not even helping the fever at all.She would fever for 10-15 days so we used alot of meds for her fvers to the point when it was ending her body would start to lose its temp she would start to drop down to about 95-93 degrees. this startewd happening @ around 2yrs of age before we had her surgury. we were not over dosing her the hospital dr.s and her pedi. said its because the body was bulding up with the meds that shehad been taking, and once the fevers were ready to stop the med were able to do therejob, but had lasting effect on her for few days after the fevers completly left her. this haapened both in my care and the Hospital which we there running test the whole time she was fevering 15days the last time because at that time we or her Dr. did not want was going on with her. sorry this was solong, but I wasnt for sure if you were awear of the surgury outlet. it has made all the difference in our daughter. ow we enjoy our life with everyday not worring about the eipsode.

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  5. Hi my daughter will be 2 years old August she had her tonsils removed May 17. Before the surgery she had episodes every 3 weeks and we made it to 106.5 and decided we need to try something because I didn't think she would be able to handle any more episodes with fevers that high. She had been going through this since she was about 5 months. But it was every 3 months then every month and for the past 5 months she had them every 3 weeks on the dot. She had what seemed to be symptoms of her pfapa last month on the 11th but the fever lasted one day and only made it to 101.5
    I'm hoping this will be the end of the fevers.

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  6. Hope this message finds Kyra well. My daughter is 19 and suffers wit PFAPA. What was the second medication she took that stopped fevers all together? My daughter takes 2 doses of prednisone. And how is Kyra now? Is she PFAPA free?

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    1. We still have fever episodes, but they are every so often as opposed to every month or every 2 weeks. To be honest, we stopped giving her medication and I don't remember the name of the 2nd medicine she was on...but it was one she had to take every day. I notice that they come on when she is over-scheduled and over-tired. I have a feeling she will always get them when this happens:(

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