My son is 4.5 years old in a minimally conscious state.
He had a massive cardiac arrest on Dec 30th 2017, which lead to Anoxic Ischemic Encephalopathy otherwise he was a happy and healthy child. Never had any issues since birth.
Now he has altered alertness and minimally conscious. The progress is very slow.
He has ongoing seizure activity. His seizures are brief and last in seconds.
He is on bunch of medications for seizures(4meds) spacticity(2meds) he gets botox too
Botox every 3 months
Working on Epidiolex now. He will be on it soon
Tube fed with pediasure
We are starting Hyperbaric Oxygen Therapy
We had stored his cord blood cells at birth. Duke has accepted him for infusion. First infusion will be sometime soon
Im not sure if we are doing right thing by keeping him awake and toxicating his body with medications which are failing to control his seizure activity.
Or should we just sedate him and wait for his brain to heal.
I’m posting this to know what other parents think.
To talk to other parents, you may also be interested in joining one of these support groups: https://hiehelpcenter.org/caregiving/caregiver-mental-health/support-groups/
The HIE Help Center team