Pam Halter
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New Medication Worries
3/5/2013 6:38:36 AM by: pam

We started a new anti-seizure medication last week. It's called POTIGA (po-TEE-ga). It's a brand new medication on the market now. It targets the potassium levels in the brain. The other anti-seizure meds target sodium levels. However, the brain is mostly potassium, and someone finally said, why don't we try something that affects potassium levels? Our neurologist says they're having "robust results" in decreasing seizures.  Alrighty then.

As with all medicines, there are potential bad side effects. Our pharmacist says the felbatol Anna is on is like giving her rat poison.  Lovely thought.  The vimpat affects her heart. Potiga might, too, so we're going for an EKG next week.  It also can cause mental confusion, aggression/anger, psychosis, extreme changes in behavior or mood, and trouble urinating. Fun.

Why do we do this to our kids? Because seizures are horrible. I mean it. Really, really horrible. Do you know what it's like to see your child in the grip of a grand mal seizure? A complex partial seizure? Twisted beyond recognition? Or those wonderful head drops, which have caused more injury to Anna than anything.

There are no signs a seizure is about to happen for Anna. No pre-seizure aura or any indication at all. She'll be playing or eating or walking and suddenly, she's in the grip of a seizure. Sometimes, they last a few seconds.  Sometimes, it's ten to twenty minutes before she's out of it. They happen anytime, anywhere. When we're in public, it freaks people out. Or they simply ignore you. I don't know what's worse. At home, if I'm by myself, I always pray seizures will be quick and easy. Hard seizures are difficult for me to handle alone. Her feet are like deadly weapons. And she's so flexible, she can nail your head, even if you are at the opposite end of her body.

Seizures are worse than the autism. They affect the heart and breathing. They cause confusion. They leave scars on the brain. They will most likely kill Anna someday.

I think of the story in Matthew 17 about a boy with seizures. The disciples could not heal him, so the father asked Jesus. "Jesus rebuked the demon, and it came out of the boy, and he was healed from that moment." (verse 18) Anna has been having seizures for almost fifteen years and I have pleaded with Jesus to heal her. Yet, she still has them. What am I doing wrong?

Nothing. Sometimes, it's God's will for His children to suffer. There's a purpose for some suffering. I don't like that thought, but there you go. He didn't keep His own Son from suffering, what makes us think we won't suffer? Even kids like Anna?

So, I pray and cling to Him and try the new medical advances God often uses for healing. What else can I do?


Comments

pam From At 3/6/2013 5:09:40 AM

Yep - what's worse? The meds or the seizures? But as a mom, I have to try to stop the seizures. They are just too awful to let them keep happening.

Anitra From At 3/5/2013 4:46:51 PM

Pam, I know exactly how you feel. I am also so tired of the drugs. Living in fear of the side effects. Not sure if I should be more afraid of the seizure or the drug. I hope this new medicine is successful for Anna.

pam From At 3/5/2013 7:42:17 AM

True - most never happen ... however, we've had bad side effects and since Anna can't really tell us, it's hard unless they're quite obvious. If she's feeling suidical, we'll have no idea. Oy!!

Julie From Gettysburg At 3/5/2013 7:39:51 AM

Pam, you are doing everything right. You are making the hard choices with the advice from doctors you trust. You are also clinging to the Lord and trusting Him. And you know, any medication has a laundry list of horrible side effects, but most never happen.

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