Read more about the article Emmett just hit a fever cycle
Emmett John / Fever Cycle

Emmett just hit a fever cycle

Recently, there was a delay in refilling Emmett's antivirals that he takes for his fever disorder. With all that had been going on with Gavin recently, I'd opted to use this opportunity to see how he did without them. He did really well for about 2 weeks but just in case, I addressed the issue that was preventing his script from getting refilled. He's got several of these in his mouth. They're very painful and related to his fever disorder. Unfortunately, Emmett hit a fever flare for what I think is the first time since lockdown. I can't remember the last time he had a flare up. It appears that he needs to stay on the Acyclovir going forward. It only took 2 weeks for the mouth sores to come…

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October 5, 2020
Read more about the article This is heartbreaking
Emmett John / Fever Cycle / My thoughts / PFAPA

This is heartbreaking

Mr. Emmett is home from school today because he's not feeling well. He's been struggling with his fever disorder related mouth sores and he's just reached a point where he's sick to his stomach. Poor Emmett didn't sleep much last night and is too much pain to go to school this morning. There's very little we can do to help him. Advil doesn't help and we can only numb his mouth up to three times a day. It's heartbreaking to see him go through this. I desperately wish the was something we could do to relieve him of this condition. 😔

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January 17, 2019
Read more about the article I’m totally lost and don’t know what to do
Elliott / Emmett John / Fever Cycle / Figuring Shit Out / My thoughts

I’m totally lost and don’t know what to do

As of early this morning, it seems that Emmett is either sick or entering a fever cycle. There's absolutely no way to know the difference.. If you're wondering about Elliott, he's still running a fever as well. WTF are we supposed to do about trick or treating today? The forecast is cold and rainy. Should we just pretend like they aren't running fevers? Should we just take the kids trick or treating anyway? Forget for a moment that today is trick or treating because tomorrow they're supposed to return to school. I haven't even begun to figure that out. I'm at a total loss. I don't know what to do and there isn't anyone out there that can tell us anything we don't already know. That doesn't mean we know…

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October 29, 2017
Read more about the article We might be staring down the barrel of another fever disorder?
Elliott / Fever Cycle / My thoughts / PFAPA

We might be staring down the barrel of another fever disorder?

As of this moment in time, Elliott is fever free. I'm not sure if he's actually sick or not because he seems to run fevers (usually low grade but higher than Emmett) and not show any symptoms. This is where my sleep deprivation comes into play because it's never really occurred to me that Elliott may be dealing with something similar to Emmett. Elliott's never shown any of the symptoms that Emmett does, aside from the fevers. Emmett gets horrible mouth sores and frankly, is a nightmare to deal with but understandably so. That's probably why it hasn't occurred to me before. If you look at the screenshot of Elliott's thermal history, you can see that he's running hot relatively frequently. This doesn't include all the time he's been dealing…

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October 22, 2017
Read more about the article He just breaks down in tears 
Emmett John / Fever Cycle / My thoughts / PFAPA

He just breaks down in tears 

Emmett is very unpleasant today. He's freaking out over every single thing that doesn't go right. Any tiny imperfection is leading to a massive meltdown.  He's still running a low grade fever, and is about waist deep inside of a fever flare.  Emmett is a difficult kid on a good day, but he's never like this unless he's in a fever flare. He's even more overly sensitive to all sensory input than he normally is and it's making things very unpleasant for him.  If we try to calm him down and comfort him, he just breaks down in tears.  Honestly, I'm really, really frustrated right now, because I'm so tired of being screamed at. I also understand that Emmett is absolutely miserable, and not enjoying things at all. I know…

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July 30, 2017
Read more about the article Why lunch was a sensory nightmare
Autism Parenting Struggles / Emmett John / Feeding Problems / Fever Cycle / My thoughts / PFAPA / Sensory

Why lunch was a sensory nightmare

Emmett's still in the opening stretch of his current fever cycle, and he's incredibly difficult to manage as a result. I've mentioned before that when he's in a fever flare, many of his Autism related challenges are exacerbated.  Typically, the biggest challenge during the period of time the flare is active is sensory related.  He becomes so much more sensitive to everything around him.  Making lunch today was a nightmare that resulted in a massive, but relatively short lived meltdown. It had to do with a pepperoni sandwich that wasn't perfect.  Sometimes he likes to make his own sandwich because it must be perfect. I should also add that he rarely ever eats a sandwich because he rarely eats bread. I don't know why it's okay sometimes and not okay…

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July 27, 2017
Read more about the article Heartbreaking: Emmett had a really rough night
Emmett John / Fever Cycle / Heartbreak / My thoughts / PFAPA

Heartbreaking: Emmett had a really rough night

I didn't write much yesterday because it was a rather trying day. Whenever I don't publish at least three or four posts a day, it's a safe bet that things aren't going so well. Yesterday was full of challenges related to Emmett's fever disorder. He was in a horrible mood for most of the day and had zero tolerance for pretty much everything. I lost track of the meltdowns, but there were quite a few.  I personally had the hardest time when it came to dinner. There wasn't anything in the house that he would eat.  Emmett's tough to feed on a good day, very challenging to feed on a bad day, and impossible when he's in a fever cycle. Last night was one of those impossible times, and it…

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July 26, 2017
Read more about the article Living in #meltdown Hell 
Emmett John / Fever Cycle / My thoughts / PFAPA

Living in #meltdown Hell 

It's safe to say that we are officially inside a fever cycle. If you look at the image below, you can see Emmett's temperatures over the last couple of weeks. We crossed over the 100°F threshold, that is typical of a fever flare. If that wasn't evidence enough, his demeanor has been a kick in the nuts. Yesterday afternoon we went Pokémon hunting/walking in North Canton. The idea was having some fun while getting a bit of exercise. Things were good until we got there and Emmett was out of Pokeballs. The moment we pulled into the parking lot, Elliott caught a Pikachu with a hat on. I guess that's a big deal. Emmett couldn't get it because he needed to find a Pokestop first. Anyway, the trip was a…

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July 25, 2017