baby moon

Considering epilepsy has been known and written about for over two thousand years, it is incomprehensible to me that there has been so little progress toward better treatments and a cure.

Recently, I saw this post on Facebook about a baby girl named Moon. It weighed heavily on my heart while also inciting anger and frustration at the status quo of epilepsy research funding and awareness:

My family is in a very difficult situation right now. My daughter had more than 2 hours [seizure] last Sunday night and doctors had a hard time controlling it. Right now, my daughter hasn't woke up yet and it is already Thursday in our timezone (GMT +8.) 

Doctors are saying that my daughter is in a very critical stage and is going for a 50-50 chance. She has a swollen brain already and that's what they're trying to control and after 48 hours, they'll try to taper down the sedatives given to her and see if my daughter will respond and wake up. I keep telling myself that I should be ready that she might leave us soon but no matter how hard I try, i feel the pain and its something I can't accept yet. She is only 19 months old, suffering from Dravet Syndrome.

Mortality rate is high, I don't know if she can recover this.

Dravet syndrome is one of the catastrophic epilepsies of childhood. It is rare, appears as if out of the blue, is resistant to medication and wreaks havoc in the brains of children. Those diagnosed with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and suffer associated conditions such as behavioral and developmental delays, movement and balance issues, orthopedic conditions, delayed language and speech issues, growth and nutrition issues, sleeping difficulties, chronic infections, sensory integration disorders, disruptions of the autonomic nervous system.

Baby Moon has been in a coma for three weeks.

baby Moon

1 comment:

  1. Christy, I just got off the phone with the director of the EFA affiliate here in LA. She also happens to be a friend of mine, and she was discussing how these kids with Dravet are often described the WRONG medication -- even by noted epileptologists! -- and that it's a huge, huge problem. These are the AEDs that are contraindicated:

    Anticonvulsants that may worsen seizures:
    carbamazepine (Tegretol, Calepsin, Cargagen, Barbatrol, Epitol Finlepsin, Sirtal, Stazepine)
    fosphenytoin (Cerebyx, Prodilantin)
    lamotrigine (Lamictal)
    oxcarbazepine (Trileptal)
    phenytoin (Dilantin, Epanutin)
    vigabatrin (Sabril, Sabrilan, Sabrilex)