Please keep my Emmett John in your thoughts and prayers tonight

Emmett’s in a bad way tonight.  He’s entering into a painful fever flare. For those that don’t know, Emmett has something called PFAPA. It’s a rare fever disorder that causes him to run fevers for no reason, while his mouth breaks out in painful sores. 

These flares typically last about 10 days and show up about every 3 or 4 weeks. 

However, for the past year, this schedule has been thrown off.  I have no idea why this has happened but after disappearing for many months, they reappeared a few ago. 

So far, the schedule has been very unpredictable the flares returned.  He had one really bad flare that required a trip to the hospital but the rest have been weird. By weird I mean that sometimes they start up and then just go away. Other times they sorta start, then stop, then start again. 

I’m not sure how this one is going to go but it’s not looking good.  He got a huge sore on the tip of his tongue and a bunch showing up along his gum line. 

image

He’s drooling a lot, bouncing off the walls and asking for help with the pain. 

All we can do is cycle between Motrin and Tylenol.  I bought some ice cream because that’s about all he’ll eat until they’re gone. 

Please keep Emmett in your thoughts and prayers because this is a very painful time for him.  He doesn’t understand but he knows that it hurts. 

We have yet to have a flare up this school year, so I have no idea what we can expect on Monday.  The fevers aren’t too bad anymore but the mouth sores make him miserable and he very quickly becomes overstimulated….

You all know what overstimulation leads to.  🙁

Thanks everyone.  I really appreciate it. 

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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Kariman Shama

hugs to Emmett. hope he feels better soon.

Catherine Abida

While ibuprofen is frequently recommended to treat pain associated with canker sores, ibuprofen can actually CAUSE them. Not a common side effect, but a known one. Just something to consider…

Raynette Jones

my kid has them because of his autoimmune diease. he has them in his mouth down his throat and thru his gi track. lovely right. It is the most horrendendous thing ever. he has had this problem since he was 13/14. they come in a 6 week cycle. steriods the only thing i have found that helps that you probably wont be able to use ethier because of sensory issues are the little round patches that you can put on them and they will heal up quick and really applies a covering so food and teeth wont hit it. of course my nt kid has the sensory issue about the way it feels in his mouth. I am constantly looking for help from drs and the medical real stuff on the internet. there are only two studies right now on mouth ulcers TWO. there really are a lot of people suffering with them (dont go to those threads on the internet as it is depresssing). I will get a list together of all the meds you can try (I hate the advice not to eat sharp stuff. ) He and I are not stupid, plus his ulcerts dont come from that. i wont even show you his ulcer pics. your kids are bad enough. I am sick of my kids mouth ulcers today too! I am really sick of it. he is on heavy duty pain meds that have helped to stop him from having a real life but are necesary. did i say i say I am sick about it. this makes me cry to think about it. i am fixing to go write my “10 good things list right now” to see if it helps. I see there are 16 more comments i have not read yet but will come back later. thanks again Rob. I dont know if this is my ptsd or feeling sorry for myself. either way i am sick of it. have a great day for real

Jana Dougherty Vogrin

Poor Emmit. Hopefully this passes quick for him and you!!. Prayers for him

Angela McDonough

Seth gets them his doctor says its viral

Lost and Tired

Dena Rosenberg-Englander steroids do help. The problem is that they aren’t safe long term and they also suppress the immune system..

Rose Morrissey Barron

Hope emmet is ok, healing and prayers fr him

Rose Morrissey Barron

My Thomas pulls his lips n chews on thm a lot. Only got worse since last week,wen he returnd t school aftr mid term break.school rang t say he was chewing a lot n they noticed sores like mouth ulcers.wen he got home he lookd pale n exhausted n chewing drooling n seemd quite hot but wouldnt take medicine t relieve any pain r temperature.wouldnt eat. I just put it down to anxiety being bak t school enviroment.. I will keep an eye on him..as always.

Stacey Maxwell

Poor guy! Will be thinking of him for sure

Dena Rosenberg-Englander

And steroids don’t help? I wonder why they prescribed them? Frustrating because she has poor verbal skills and can’t tell us what’s bothering her

Melissa Hobson

When he was a baby we thought the fevers were because of teethng it wasn’t until he was 4 or 5 and they started coming every 3 weeks like clockwork that we knew something wasn’t quite right. His fevers would hit suddenly, last three days and then disappear as quickly as they hit. He couldn’t eat or drink anything without throwing up. So glad those days are behind us… hopefully.

Lost and Tired

Dena Rosenberg-Englander it’s frustrating isn’t it? There’s most nothing you can do and it kept Emmett out of school until kindergarten.
Most Scholls have a policy that states fevers over 101 require the child to stay at home.
Even if you get the doctor to explain that there’s no illness, you never know ow when it’s a flare of when the child is actually sick.

Dena Rosenberg-Englander

Here’s were like clockwork for about 5 months. Then it stopped, then started.

Lost and Tired

Dena Rosenberg-Englander Emmett’s were like clockwork. 10 days on and roughly 2 weeks off. Then after the surgery, the schedule became unpredictable. This is such a horrible thing for a child to go through and there’s almost no research being done because it’s no rare.

Lost and Tired

FRED Conference thanks. Emmett’s actually using a special tooth paste that was sent to me by a dentist that created it. It’s all natural and doesn’t foam. It’s a clear gel. I’m really glad your sons made it though to the other side of this very painful….. Whatever it is.

Dena Rosenberg-Englander

Interesting. She had fevers every month with no other cause up to 105 for many days. Then they disappeared and she had a 107 fever last June.

FRED Conference

My son had similar horrible sores all over his mouth, throat and tongue. They would come and go. No doctor could help. We eliminated SLS in his toothpaste and other products and they disappeared, never to re-appear. SLS is a foaming agent in many products you’d never imagine (i.e. Benedryl).

Lost and Tired

Dena Rosenberg-Englander he had surgery to remove his tonsils and adenoids. This is the only known possible treatment. Before the surgery, his fevers would stay at 104-105°F for roughly 10 days. After the surgery, they are much better and usually sit around 101-102. Sometimes he doesn’t even get the fever, just the mouth sores.

Dena Rosenberg-Englander

Thanks. Her patterns are inconsistent and many other things have been ruled out. They gave us steroids to use for her next fever to rule out a fever disorder. How high are your sons fevers?

Lost and Tired

Dena Rosenberg-Englander If I recall correctly, it took awhile. They established a pattern and basically ruled out everything else. There was blood work involved because when he had a fever, they had to make sure there wasn’t a reason for it.

Dena Rosenberg-Englander

Just wondering how your son was diagnosed? They suspect that my daughter has a fever disorder.

Lost and Tired

Melissa Hobson thanks a lot. Haven’t found too many people that have experience with PFPA. 🙂

Melissa Hobson

Hi Rob! Our son suffered from this for several years, but our doctors said that usually by age 10 the fevers just stop. I’m very happy to say that my son his turning 8 in a couple of weeks and he hasn’t had a fever in over a year. Hang in there, there is an end in sight.

Ruedii

I know how bad it is to have one canker sore in my mouth.   I can’t imagine having my mouth covered with them and getting a fever.
I hope he can get it cleared up. 
It really sucks that so many anti-histamines interact badly with Autism and the related disorders, as that just makes things worse when someone with Autism gets something like this.

KathyBrower

Emmett became non-verbal again?  I thought I had read that he spoke very well for a severe kid ;(.

Lost and Tired

techgurl1988 BeckyRogersWiren thanks so much.  As for Lupus, I don’t know if that was ever specifically rules out but I will say that his hands get got to the touch during these periods of time.  They even thought rheumatoid arthritis but his levels were normal. 
I’ll look into those oils.  The k you very much.  🙂

techgurl1988

I know you guys have been through a lot so excuse the suggestion that I am sure the doctors have already tried but with the mouth sores and the fevers, what about lupus? And I know he is non verbal but is it really impossible for a doctor to believe he needs something stronger then Tylenol or Motrin?
In the mean time, I have a suggestion…natural anti-inflammatory like cumin or curcumin, or evening primrose oil. All safe and no harm but of course ask doctor. May God bless you all.

BeckyRogersWiren

Bless you Rob and you son…hope he feels much better soon, and you get some good rest!

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