As of today we have new seizures. This has happened four times today. Three of the times while I was holding her, and once while she was sitting on the floor playing.
Her head drops straight down super fast, her arms come out to her sides. It lasts maybe two seconds? Then her head comes back up and she smiles at me like nothing happened.
Drop seizures? Something else? UGH! I don't know. I can't blame it on the Lamictal not working, because we don't even have it yet! That's right, the insurance denied it. First they denied the name brand, and requested that the doctor allow them to fill it with a generic. He agreed, then they refused the generic. They said it needs a prior auth. So we don't have that on board yet, so I don't know if it would be helping or not.
And ... the UTI she had last week? She's been on the wrong antibiotic for the last week. Which explains why her pee is still funky and she still feels like crap. I finally called the pediatrician last night, because no one ever called me to give me the culture results. He said "What? The urology nurse didn't call you last Thursday??" He was furious. Turns out that the UTI is not responsive to Bactrim, the med they put her on last Monday. And the urologist was supposed to call me Thursday to tell me this, and call in some new hardly ever used drug. Which never happened. So the pediatrician called it in last night, and of course the insurance denied it and now we are waiting for THAT appeal also.
Seriously, MediCal, what the hell. It's not like she's having seizures or anything! Oh wait ......
I just left a message at the neurology office, explaining these new spells. I don't like them. I don't like that every week we are seeing new kinds of seizures. I hate them!
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
3 comments:
I'm so sorry! Seizures and insurance companies suck! Why can't life just go easily sometimes?!
I pray that they will approve these meds soon and that they will both do their job! Hang in there Momma! HUGS!!!
You know I'm the queen of siezures, Jax has every siezure known to man. What your describing sounds like infantile spasms. Do they happen in clusters? If you can get it on video I can tell you. You'll want to know if they are because there are seperate siezure meds for them. Topamax is one. Also ACTH, which is a shot they take for about 6 weeks. You can call me or email me if you have questions.
Do you know what kind of bacteria grew in her culture? Just wondering. Praying for her seizures, I am no help there with seizures. Wow, what a day you had.
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