8.23.2017

jojo + PFAPA


just in case you missed the (extra long) explanation on the 'gram stories, I wanted to share here about Jolie and what's been going on AND that we finally have a diagnosis.
you have no idea what a relief it is to have some answers. 
I honestly didn't see the effect it was having on me, my emotions, and my heart until I was basically walking on a cloud yesterday after our appointment with the rheumatologist.

taking you back a couple weeks ago, we got a call from the clinic because someone had cancelled their appointment and there was a time slot available. it happened to be a Tuesday, which is my usual day off during the week AND Jordan was off to be able to go with me.
perfect.
truth is, I was a little hesitant about going and I sort of walked in with very low expectations of the appointment. our pediatrician had mentioned about a week prior to getting the call about the open appointment that we shouldn't worry about going if we had to wait until OCTOBER to get in.. and that she really feels like infectious diseases should be involved instead of rheumatology.
within just a handful of minutes of visiting with Dr. Stewart at the Children's Hospital of Dallas she had a diagnosis for us. 
"..excuse me, but do you have a handout on this?"
Periodic Fever, Aphthous Stomatitis, Pharyngitis, Cervical Adenitis (PFAPA) is a syndrome that consists of recurrent episodes of fever, sore throat, mouth sores and swelling of the glands in the neck.
Jolie has all of these things. 
she has fallen into a period of 4-6 weeks between episodes and her episodes of 104+ fevers last about 7-12 days.  these fevers completely knock her on her rear.  she's lethargic, doesn't hardly interact or play, and definitely doesn't eat.  occasionally this is coupled with nausea and the lymph nodes in her neck swell and become painful. 
in regards to the mouth sores.. I've noticed they come about a week before the episode.  and as a matter of fact she complained about her mouth "burning" a few days ago.. I didn't think anything of it then but now I know what I know, and she's been 6 weeks fever free, so I'm anticipating a fever any day now. 
ugh.
we do have a plan, though.  for now, we are going to watch and treat her for the symptoms as they come. maintenance medication is the last option for both us and the doctor mainly because the side affects of these drugs can be hard on her little body (stomach upset, damage on her liver, ect.). we could also treat with steroids with the onset of fever.. but steroids have a track record of causing the dormant time of these episodes to become shorter (i.e. 2 weeks between fevers instead of 4 weeks) which we experienced when we were treating her for what we thought was an infection in her lymph node when all this mess started.

we go back to the rheumatology clinic the first week of January and most likely we will plan the surgery to have her tonsils and adenoids removed. 100% of the comments I received talked about their success with the tonsillectomy- and Dr. Stewart agrees that this would be the best option for Jolie to find ultimate relief in these symptoms. apparently tonsils house a ton of bacteria and can be the root of all these issues Jolie is having. 
AND most importantly we don't want to be walking into kindergarten with these fevers, you know? 

I hate this for her, BUT I am thankful for answers. I shared the news on IG stories yesterday and the amount of people that came out of the woodwork to offer encouragement because they have directly gone through this with their child or know someone that has, was incredible. something so foreign to me is actually much more common than I could have imagined! 
the tips and tricks and trial and error so many mamas offered was phenomenal. 

I cannot thank you all enough!

3 comments:

em said...

My son had the same exact thing and the doctors couldn't figure it out for over a year. After countless doctor visits we finally started researching the fevers and ran across PFAPA online. Since our local pediatrician wasn't familiar with PFAPA, I called a Children's Hospital a couple hours a way and they had a doctor who was thankfully familiar with PFAPA. It took one visit with that doctor to know it was for certain that he had PFAPA. We scheduled his tonsillectomy (he kept his adenoids) and it was the best decision we ever made (definitely hard and scary). He was 4 at the time of the tonsillectomy and he is 8 now and hasn't had an episode since. So glad you have answers and a plan in place for your little one. If you ever need to chat please don't hesitate to contact me.

Katy Wright said...

Wow! I've never heard of this but I am SO glad you have answers now. The momma heart can only take so much uncertainty. Prayers for complete recovery! That tonsillectomy will be a game changer girl! Keep staying strong :)

Naomi Carpenter said...

SO glad y'all have a diagnosis and a treatment plan! We will be praying for Jolie for the next few months and throughout her surgery. So glad you have a great support system and SO thankful for the medicine we have access to here in the USA, right??? :) xox...

Naomi

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