UPDATE-Im so proud to say, Blake is home! Yay! These past few days - TopicsExpress

UPDATE-Im so proud to say, Blake is home! Yay! These past few days have been a journey & one that I would like to forget. On Thursday night, Blake had 56 seizures within a 5 minute span. Its awful to be there & witness your child having the seizures knowing that theres nothing you can do to help, I wish I could take it all away or kiss the boo-boo & make it all better. That was certainly the most that Blake has ever had an once & Im so thankful that we were at Brenners in the Epilepsy Monitoring Unit when these occurred. He had lots of other seizures on Thursday & Friday so Im thankful they were able to capture those as well. Theres all sorts of medication for seizures but due to Blakes other health conditions, heart problems, hypertension, kidney issues, etc., Blakes limited on which ones he can take for treatment. At this time, the doctor has sent us home with an additional seizure medication called, Onfi. Were hoping that this third seizure medication will help to eliminate most or all of Blakes daily seizures. Blakes Neurologist made me aware that I shouldnt be too hopeful as shes not sure medications will ever stop Blakes seizures entirely, due to this, we may be trying the Ketogenic Diet. Its a special high-fat diet that is used to treat patients who have seizures that are difficult to control. Basically, its theorized that the ketones produced by eating a high-fat, low-carbohydrate diet causes a metabolic change in the body fat that affects the brain chemistry which in return means seizure free. The diet requires hospitalization for a week & will require frequent lab work & visits to Brenners to frequently meet with the Keto team. Please pray that this is the solution & will in return, allow Blake to be seizure free. As you all know, today is the day of the benefit ride & as much as we would like to be there, Blakes doctor says its best to keep him home for 24-48 hours after starting the new medication as hell be very lethargic at first. We were hoping to see you all there but we have to do whats best for Blake. Please feel free to post pictures & tag us in them so Ill have these to one day show Blake the love & support from his community. Thank you all for your continued prayers, love & support. Were truly blessed.

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