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Home / Community / Acquired HIE

Acquired HIE

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
Meds List
KEppra
Trileptal
Velproic Acid
Gabapentin
Baclofen
Valium
Clonidine

Botox every 3 months

On suppliments
Omega 3
Colagen+c
Ashwagandha

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.

Thank you,

Download this page as PDF

Shwetha

Mother

Filed Under: Community

Comments

  1. rstokes says

    March 5, 2019 at 9:25 pm

    Hello,
    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/
    Best wishes,
    The HIE Help Center team

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The HIE Help Center serves as an informational resource guide for families of children with hypoxic-ischemic encephalopathy (HIE). It is sponsored by ABC Law Centers, a birth trauma law firm that has represented families of children with HIE and other birth injuries for over 20 years.

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