We’re praying this finally helps Emmett with his pain

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Today’s trip to the immunologist was very trying for me personally. It felt absolutely chaotic and frustrating because everyone was experiencing some degree of anxiety. That made them difficult to manage as well as very, very loud. I always find it odd how my kids can be very sensitive to sound and yet outrageously loud at the same time.

Aside from the appointment and the drive being overwhelming for me, the results of the appointment were relatively positive.

Just so we’re clear, everyone behaved really well and cooperated as best they could. This was a big ask for them and truthfully, it went really well. It was just a lot for me. The staff loves seeing everyone and it’s like their major event for the day. I was just overwhelmed and that’s more on me than anyone else. I just wanted to clarify that.

Lizze and Elliott’s appointments were mostly uneventful. Lizze is starting a new allergy medication and we will be tracking Elliott’s fevers on a daily basis until our next appointment in two months. Elliott’s dealing with fevers in a similar way as Emmett but is otherwise a-symptomatic. For right now, we’re going to track things and see what happens.

As far as Gavin is concerned, there’s some confusion over his new IVIG medication. The doctor wrote the script for one infusion per week but the script was filled for twice a week. It apparently doesn’t matter but the doctor wants to make sure we’re all on the same page. We’re going to keep things at twice a week because it’s easier on Gavin’s body to keep things the way they’ve been for the last 5+ years. I just need to call the doctor in the morning and let her know that we’ve got enough supplies to continue with twice a week. She will then adjust the script to reflect twice a week to avoid any issues moving forward.

Outside of that, Gavin’s doing pretty well. He also starting a new allergy medication. I forgot about that.

Mr. Emmett is a bit more complicated. I mentioned that we were going to discuss cyclic neutrapenia because that had been brought up. Turns out that she had already tested for that when he was little and first began presenting with these cyclic fevers. There were so many things looked at back then, I didn’t remember that being done.

The biggest issue at this point is trying to provide him relief from all the mouth sores. They seem to be happening more frequently lately and they are very painful. They last about a week, sometimes more and significantly interfere with his life.

The reality is, there’s nothing we can do for PFAPA. He’s already had his tonsils and adenoids removed. Steroids greatly shorten the duration of these flares but you can’t use steriods longterm without serious side effects. Basically, it’s not safe to use steroids as a means of treating the sores. What we are going to try are anti-viral medication. She’s calling in low dose anti-virals and hopefully that will stop or limit the sores all together. I don’t remember the name of the medication but I’ll share it when we get the script. I don’t know what the outcome will be but it’s worth a try. He will need lab work done and must return in two months for a follow up.

That’s about it for the moment. It would be amazing if this actually helps. His life would improve significantly if he didn’t have to deal with the pain anymore or even if they didn’t show up as often.

It’s been a really long day and I’m exhausted. I’m hoping to get a decent nights sleep, I need it.

Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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My daughter is post transplant and gets these sores, as well as all the pain listed in symptoms. Drs just shrug.

Robert Wolfe

Is he biting his lip? I’ve been doing that since i was little & still do

Jacqui Mc Menamin

Mouth ulcers are linked to zinc deficiency.

Amy Marie

Infant Tummy Drops