PFAPA Archives - The Autism Dad

This is breaking my heart

Emmett is absolutely miserable. The sore in his mouth is now about the size of a large pea and it's in a place that is constantly being irritated. He's spent a lot of time crying today and it's heartbreaking. I had orajel, special mouthwash and ice cream delivered at 8am and aside from the ice cream, there was no reprieve for him. The over the counter stuff doesn't seem to numb these sores and we're out of actual lidocaine. I have to call on Monday for a refill. It's so hard to see him in this much pain and be powerless to help. He can't really chew anything and when he's in these flares, he usually lives on ice cream. It's kinda like when someone gets their tonsils out, they…

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December 19, 2020

My thoughts

Please keep Emmett in your thoughts

Emmett's in a bad way. He's hit a fever flare and this one is particularly painful. His first mouth sore popped up two days ago and there are likely more to follow. The poor kid is in a tremendous amount of pain and there's not much I can do to help. We've doubled up on his antivirals and he's swishing with salt water. There are more that will likely pop up over the next few days and he's going to be even more miserable than he already is. I was originally going to close things off here with something about having to order ice cream for him because it helps numb the sores. Unfortunately, as I was writing this Emmett came into my room in a panic. He was holding…

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December 19, 2020

Emmett John / My thoughts

Have I said how much I hate 2020?

Emmett's not been having a good week in regards to school. He's been in a fever flare for going on a week now and that's likely contributing to his struggles. As crazy as it sounds, I hadn't put two and two together until this morning. He's been doing well since returning to his old school. This morning he woke up not feeling well and I tried to help him work through it but he's miserable, so I let him go back to sleep. The antivirals haven't really helped reduce this particular flare yet and he's still in a lot of pain. At least he can find some relief if he sleeps. I called the school and Emmett will do on today's work when he wakes up. There's a lesson learned…

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October 7, 2020

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

Emmett John / My thoughts

It all happens at noon today

It's already been a hectic morning but I did receive the call I've been waiting on from Emmett's pediatrician. The long and short of things is that Emmett will be seen at noon today. Lizze and I dropping Gavin off with my Mom on the way. We can't risk exposing Gavin to whatever bugs are floating around the pediatrician's office. Hopefully, we'll learn some ways of helping him to feel better. I can see us getting a referral to Gastroenterology, which wouldn't be a bad idea. I don't know how excited Emmett's going to be about going to the doctors but there's no choice st this point. He's missing way too much school and besides that, he's absolutely miserable. I'm looking forward to this appointment because I really worry about…

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March 20, 2018

Emmett John / My thoughts / School

He’s NOT faking this

Emmett isn't feeling well again this morning and rather than encourage him to go to school and at least try to see if he'll feel better, we're keeping him home. The main reason we're keeping him home is because we'd have to pull him out anyway for his appointment this morning. I don't know what time his appointment is because I haven't heard back yet but I'm supposed to hear something within the next hour. As I mentioned previously, I'm at a loss with the situation. Emmett is not making this up and he's truly miserable. To the absolute best of my knowledge, he's not trying to get out of going to school either. No one who knows him thinks that at all. I just wish we could figure out…

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March 20, 2018

Autism Parenting Struggles / Emmett John / My thoughts

I hate feeling powerless

It's now 1:47 AM and Emmett has just now fallen asleep. We've been trying to help him for hours upon hours. He has a really bad tummy ache and feels like he's going to puke. This is stressful for any kid but it's especially so with a kid like Emmett. To make things even worse for the poor kid, he also seems to be hitting a fever flare because he's getting sores in his mouth again. I don't know what the deal is with these tummy aches but they are consistent, especially when school is approaching. He's not making this up and he's clearly in distress but the cause remains a mystery. My personal opinion is that we're dealing with a side effect of his extreme anxiety. He struggles with…

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March 12, 2018

Gavin / Inspirational Posts / My thoughts

He’s 18 years old on the outside but not on the inside

Gavin's having a rough time today. He's eighteen years old now but can't be treated or managed like a typical, freshly minted adult. Unfortunately, Gavin's cognitive ability is significantly lower than his chronological age. Until we have his new NeuroPsych testing done this summer, we won't know exactly how much he's regressed since the last time he was tested, but his doctors have pinned his emotional age at around eight or nine years of age. That's a ten year difference between his developmental age and his chronological age. As he gets older, it becomes more and more obvious that he is struggling. Today he was taking out the recycling (supervised of course) and his lack of ability to problem solve was on full display. We have recycling collected in a…

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February 19, 2018