Not that I don’t love being around my kids, cause I do, but it’s been a very looooonnnggggg summer. Most of our energy is spent on Emmett because he is into absolutely everything. He can be very aggressive and doesn’t always play well with his brothers.
School began last Friday and Emmett loves it there and we are actually happy with the classroom and teacher as well. Everything seemed to be going better then expected until 5 letters crushed our dreams of a daily 2 hour break……PFAPA
PFAPA is the likely cause of Emmett’s chronic fevers. Emmett is currently just beginning a flare up. However, he now has the other symptoms of cold soars literally covering him mouth and tongue….and….they are contagious.
This will continue to keep him out of school for at least the next week. As long as he’s contagious and or running a fever he has to be kept home. The problem is that this is likely to occur twice a month, meaning he could be missing 2 weeks of school per month.
The question is, what the heck do we. do? Home school?
– Lost and Tired
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Hi, my son has had PFAPA since he was about 1.5 years old. He's fine otherwise, but the mouth sores were awful in the beginning, but over time, have almost disappeared and are now almost non-existent while he has a PFAPA flare-up. However, I was never told that they are contagious and as long as he felt up for it, we were allowed to socialize. We've seen multiple pediatricians and Immunologists.
Now, 3 years later, his episodes are much more wide-spread and he has lower fevers that don't last as long (1-2 days vs. 3-5 days), rarely has mouth sores, but does get stomach and joint pain, along with swollen glands and tonsils.
I would say that if you talk to Emmett's teachers, explain what's going on and that the fevers are not contagious, you could/should send him to school, as long as he feels up to it.
Good luck and I hope Emmett will outgrow it sooner than later. Most kids will!
Thank you. He goes in on Wednesday to have his tonsils and adenoids removed.
Good luck. I'm considering a T&A for my son as well, for more than PFAPA. I'll be following your blog to see if it helps Emmett.
I\’ll document as best I can. I\’m told that PFAPA is quite rare. Is that what you are told as well? Thank you for your thoughts. The T&A is supposed to reduce the flare ups. Emmett has a flare up about every 3 weeks or so. The fevers last about 10 days for him. Hopefully this will help him to dairy better this winter.
Yes, it's what I found out. It took my about 6 months of rigorous documenting and ER & doc visits, blood tests, etc. to finally get the diagnosis that I had long expected. However, there are far more children dealing with PFAPA than is documented, just because there is no definite test for it, but you rather have to rule everything else out first.
I think you made the right choice by trying a T&A. Since there is no definite answer on when or if he'll outgrow PFAPA and the fevers are so long and pretty close together.
Crossing my fingers that all goes well with the surgery and recovery and Emmett will be fever & symptom free for the rest of his life.
I would caution against home schooling for Emmett. The most important aspect of school for a child with asd is socialisation. By all means teach him stuff while he's home sick but interacting with other kids is going to be invaluable for him. You know he's bright so shouldn't really have trouble picking up what they're learning at preschool. Hope he feels better soon!
That is the single biggest reason we don\’t like this idea. Thanks 😉
I don't know how comfortable you are with very large doses of vitamin C, but I would like to recommend it as a relatively harmless treatment for anything that involves sores in the mouth, or fevers that are symptoms of an immune system that has gone into overdrive. When my sister was little her immune system was always crazy and she had these fevers every few weeks. We didn't know what it was then, but she has over the years had many related illnesses that point to an immune system that is out of whack.
She almost died with fungal pneumonia a couple years back and came to stay with me, so weak and run down she was confined to bed a lot. I started giving her Vitamin C crystals dissolved in juice every three hours. Large doses-up to 4000 milligrams, per dose. The crystals themselves are a bit tart, but using the high quality ones from the health food store makes them easier to drink They are good in something like grape Koolaide or juice.. I like the Kirkman or Kal brand. There is something about the dissolved form that quickly saturates the tissues with Vitamin C. They important thing is to be saturated which might only take a few large doses for a child. My children tell me that drinking the liquid Vitamin C instantly relieves soreness in their mouths and throats. My sister said the same. Anyway after about three days of heavy doses of liquid C she was a new person. If loose bowels become a symptom, it shows the tissues are saturated and you can back off on the dosage somewhat.
So it might be worth a try. (1) because it relieves the poor kid's pain, and (2) because it goes to bat for the immune system and combats the fever. I have home schooled my own kids, tutored other people's home schooled kids, and sent them to regular preschool. Most, though, not all the time, I like preschool and my kids did too. Hope you can get him back to normal and in school. I'm sure he misses it when he is sick.
My cousin was having issues in school when she was younger. My aunt actually did some checking around and found a woman, retired school teacher, that agreed to come to the house and "home school" my cousin for the first year of school. She didn't charge very much, infact, as I recall I don't really think she actually CHARGED anything. I think my aunt just paid her for taking the time to do it. Maybe the school could give you some ideas for something like this? At least if you had someone else who would be willing to do this you and Lizze could still have time to yourself as if he was actually IN school. You guys could go out to breakfast, lunch, etc. As long as you find someone you trust! I don't even really think that you would need anyone like a retired teacher, since it is preschool. I home schooled Sayge for preschool and she is doing great in school now! I just bought some of those teaching books they sell at like the Dollar Store and places. If you want more information let me know. There are some great websites out there that will help you learn what they have to be taught to get ready for Kindergarten. Love you guys 🙂