I wanted to share with anyone new to this site what my son Emmett goes through when he hits a PFAPF related fever flare. This is a rare fever disorder that used to come in cycles. It would hit about every 3 weeks and last for 10 days.
There isn’t a known cause for this and over time, it does seem to have slowed down a bit.
He’s in another flare now and I wanted to show you a picture of one of the many sores that appear in his mouth and throat.
This is a small one and they can get to be the size of a dime. They are as painful as they look and there is nothing that can be done about them.
He got off to school late yesterday and almost didn’t make it at all. However, he did end up feeling up to going eventually.
He’s usually quite miserable during this period of time and understandably so. Hopefully, this cycle will not last the full 10 days and he will be feeling better soon.
This site is managed almost exclusively from my Samsung Galaxy Note 3. Please forgive any typos as auto-correct HATES me. 😉
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rjones22 @Tara Phillips @Elle Hansen @Janet Meliti @doGFREEright thanks everyone. While this is gluten related, as he’s been tested, it’s suppose to go away as he grows up… It seems to be happening less frequently.. 🙂
Get well Emmett!
My daughter gets sores like that in her mouth sometimes. Only one or two at a time but I don’t think she has fever with them.
Thanks for sharing this and giving us the insight.
he is in terrible pain with those. i had my son take pics the other day of his. then i started thinking i have a photo album (digital now) with a bunch of terrible pics of a bunch of terrible things regarding my son’s illness and it is only about 10%. I am so sick of his mouth ulcers. it hurts to eat or talk. i am so sick of it. I can’t imagain how sick of it he is.
@doGFREEright Lost_and_Tired I have not thought about gluten for my boys major terrible mouth ulcers. thank you for that. I will research that. we go to his oncologist and rhumatologist thursday and they can never do anything thanks! and thanks for your blog rob or I wouldnt have seen this post
Lost_and_Tired gluten baby, consider a gluten connection -often a cause of mouth sores! Given background, it could be the answer!