09/30/2026
Good morning! Archie woke up happy as could be and wanted to do a little AHC Q&A for some of the questions and comments we hear most often.
“Will he grow out of it?”
No. This is a life long condition. Although “childhood” is in the name, that’s when symptoms typically appear, not an indication that it will only last for his childhood. Children with AHC turn into adults with AHC.
“He looks so good right now. Medicines and therapies must be working.”
To a certain extent, yes? There is an element of degeneration with this disease. Every episode has the potential to steal skills and body functions. Our main priority right now is keeping his epilepsy under control and while he hasn’t had any major seizure events recently, we do see seizure activity and other types of episodes, like dystonia, fairly regularly. Every day is unpredictable, so how Archie is today does not mean he will be that way tomorrow.
“How often does he have episodes?”
Almost daily. We typically go three or four days where he might have a single dystonic episode those days that is less than ten minutes. Then the roller coaster goes again and we will have three or four days of multiple episodes throughout the day and night, sometimes lasting hours. Those days are a battle getting to nap time or bed time when he can finally rest comfortably.
“Can you tell if an episode is about to start?”
Most of the time, yes. Archie is like a cup. Every time he gets stimulation from traveling, being in a crowd, etc. it is like adding water to that cup. Once it overflows, he will get weak and his eyes going into a nystagmus are his first indicator that an episode is coming. We then have a limited amount of time to remove him from the stimulus, calm him down, and let him rest. We are very cautious about resetting his cup.
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