This week finds us in the Neuro Trauma Unit at the local children's hospital. Hippy Kid has had seizures for many years ( possibly since birth ) and has a diagnosis of focal seizures as well as generalized tonic clonic. She has damage to the gray and white matter of her brain from lack of oxygen at birth , so they believe that is what causes her epilepsy.
So after trying 4 different medication to control her seizures, the last giving her Steven Johnson's Syndrome ( picture's below ) we are trying to get approval for a medical marijuana card, so we can see if that will help control them.
As you can see SJS is horrible :( It created blisters all in her mouth so she couldn't eat. ) . It took months to clear up and we had several trips to the ER through it.
So with that now comes an in patient stay to monitor her seizures. They are trying to find all the triggers, and also trigger seizures so they can capture them to submit to the state for approval for a MMJ card.... This is ridiculous honestly. But we don't want to have to move states and become what they call " medical refugees " just to be able to give our child the chance to try plant oil to see if we can control her seizures without the side effects of pharma meds.
So here I sit in the Ronald McDonald house parents room, typing this... I am thankful for the quiet space to sit and take a breath away from the beeping of the monitors and the bustle of the neuro unit floor.
I will do daily posts showing what life is like here for her, and for me as her mom.
Much Love,
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Thank you for sharing your experiences not only so that we can have a better understanding, but so that other families can learn and come to know that there are answers out there somewhere. I appreciate your example of being a devoted advocate for your children. I wish every child in the world could experience that kind of love. You are amazing. hugs~
ReplyDeleteOh, poor thing! What a difficult challenge. I will be praying for you all, especially your sweet daughter. Hugs!
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