Emmett is understandably miserable

Emmett is understandably miserable

So I was able to get a picture of just one of the many cold soars Emmett is dealing with right now.  This is actually a smaller one.  I got the pictures so we could gauge the progress and recovery. 

We got some medicine tonight to numb up his mouth for a bit.

The problem is that it’s like mouth wash.  How many 3 year old and rinse,  swish and spit?  They said it’s lidocaine,  benadryl and antacid so he can swallow some.  This doesn’t seem very well thought out.

We just used cuetip to apply it instead. FYI,  for a child with pretty significant sensory issues, it appears that having his mouth number is worse then the pain. I hadn’t thought about that.


– Lost and Tired

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We used the same mix – "magic mouthwash" when my infant daughter had mouth sores caused by chemotherapy. We used a little sponge to wipe around in her mouth. The doctors gave us the sponges – they were on little sticks so that we could easily swirl them in the mouthwash then dab into her mouth.

And I agree with Kathy above – look into the school district providing a home teacher for him while he is ill. It doesn't hit the socialization goals, but it gives him a chance to stay on track with his peers academically when he is well enough to go back.
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If the PFABA isn't a comfirmed by whatever means diagnosis (I googled it and can't see any diagnostic criteria, just exclusionary things), I'd consider checking other diagnosis. Chronic herpes infection? Could trigger fever and mouth sores. Unrelenting silent reflux? Pedi dentist said it can cause the sores and the bacteria in the mouth can cause the resulting fever. Unfortunately nothing is easy and nothing is a quick diagnosis or fix.

On school, at least in MA, if your child is out for extended time because of illness, the school is supposed to provide tutors for your home.


🙁 Poor Emmett


What I don't understand is why it's contagious. I lnow why cold soars can be contagious but this is part of PFABA and tied to the chronic fevers. I'm not sure why this would be contagious unless there's something more to it. For this particular disorder, the prednisone is supposed to make them go away.

We are back at the immunologist in the morning so I'll ask.

Is there any way you can use/obtain something like Releeve, or Abreva? I used it on my latest eruption, caught most likely from my daughter, Typhoid Josie, since she had been complaining of what I only afterward realized *was* a cold sore too. Thought she had bumped her lip and given herself a fat lip. :-[


I brought my daughter to the dentist today for a matching tongue. We left with no prescription but my sister is a pharmacist and says something called viscous lidocaine would be much easier to work with on a little kid with autism (my daughter is 3 with autism as well). It's cherry flavored and thick so you just paint it on.

Is there anything to say the rest of his GI isn’t suffering with these sores? Herpes is the same ” family ” as measles…just wondering if they have looked at that…

Would love your thoughts, please comment.x