Our local ER, that we went to that night, told us: 'they are face twitches, everyone has these'.
I said: "What? I have never seen anyone with those."
The next day, she was not any better so I took her to her regular Doctor and he told me same thing, adding what a seizure really would look like (full body). And sure enough, that night, she had the first full body seizure.
By the time we made it to see the Doc that specializes in this kind of stuff (at Primary Children's Hospital) they said: yes, these are seizures and they are called 'face seizures'.
At age 6 months, we were having 80 to 90 seizures a day. From age 1, they said she was Developmentally Delayed and by age 3 they said she had CP. At 3 1/2, we found out she also had Scoliosis. She had 2 rods put in her back at age 5. By 6, she got a Vagus Nerve Stimulator, to help with the seizures. With the VNS and 5 meds, we now have only 8 to 15 a day.
We where G-tube fed for awhile, and also had a GJ tube, but in the last year she can not do any kind of feeds, so we are on TPN through a central line.
No matter what life has thrown her way, she is a strong little girl and I would not change my life for anything. I love her so much for she is my whole world.
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