dysplasia. Not ready to accept this diagnosis, we took her to a top nuerologist at Childrens Medical Center in Dallas. Feeling lost at the 2nd Doctor now confirming the horror of her condition, we begin administering anti-convulsant drugs. From the very beginning the medication made her condition so much worse!! With the Dr.s help she was weened off the medcation and off to trying another drug. Once again, the medication continued to worsen her condition. Finally after several attempts she was put on depakote... this medication did not stop her seizures, yet it didn't seem to help. After her seizures begin to worsen....it was time to add another terrifying drug!! Felicity now on 2 very risky drugs continues to worsen; however, the Dr. refused to take her off the medications. The Dr. believes that the risk of taking the medication doesn't outweigh the benefits. (yet there have never been any benefits). After alot of persuasion from her Dr., we put her on a fifth medication. This made her walk around with her head constantly hanging and drool coming out of her mouth. If she wasn't walking like a zombie, she was throwing tantrums and acting very agitated. We were able to ween her off this medication, but not without it sending her into absence status epliticus. (meaning that she is in a continual seizure. This is a life threatening condition) She was flown to Dallas Medical Center at which time they wanted to put her on even another drug!! This one could cause her to have psychotic episodes. Needless to say, we refused! NO more! Felicity is still on four medications all of which can and probably have worsened her condition. Yet weening her off can be very dangerous.
Lets move forward to the present. She is almost always in the catatonic state. Her seizures have gone from blank stares, not grand mal seizures, mayoclonic, drop attacks. Still NO relief! No quality of life!! She cannot walk without wearing a full helmet. As parents we will do anything possible to make our childrens lives better! Medical marijuana has been repeatedly proven to STOP seizures in children that are even worse off than Felicity...(though it is hard to believe that it can be worse ). As a last resort to help our beautiful little girl have a chance, we want to take her to Colorado to see Dr. Shackelford. We pray that with the help of all of you Felicity will be seizure free and begin to live her life again.
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