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?
Medical Moms
1/26/2019 7:03:00 AM by: pam
The Power of Doritos
5/7/2018 12:00:00 PM by: pam
Yay For Friends!
1/9/2018 3:15:00 PM by: pam
Show You!
9/11/2017 12:58:00 PM by: pam
Happy? 26th Birthday, Anna
5/15/2017 7:37:00 AM by: pam
Re-grouping
3/14/2017 8:10:00 AM by: pam
We can relate!
9/1/2016 8:00:00 AM by: pam
A Little Fall Fun
10/18/2015 8:04:11 AM by: pam
Going Commando
10/5/2015 6:37:04 PM by: pam
So Behind
9/22/2015 8:42:33 AM by: pam
Stares and Storytime
4/12/2015 7:12:46 AM by: pam
Big Big Changes
3/27/2015 9:12:27 AM by: pam
Blog Post on Autism
9/22/2014 7:30:14 AM by: pam
The Power of Pets
9/12/2014 4:21:44 PM by: pam
Depression's Demands
8/15/2014 2:19:26 PM by: pam
Do We or Don't We?
8/4/2014 12:00:01 AM by: pam
Falling Down
6/22/2014 1:36:52 PM by: pam
Research Study
5/23/2014 12:48:08 PM by: pam
Who goes? Who stays?
5/19/2014 12:11:51 PM by: pam
Being Thankful
4/25/2014 7:37:26 AM by: pam
Excellent Article
4/7/2014 7:03:09 AM by: pam
Jury Duty and Holland
3/27/2014 7:36:35 AM by: pam
I Confess
3/17/2014 8:11:55 AM by: pam
The Dreaded Medication Change
3/4/2014 12:49:56 PM by: pam
Keeping It Together - part seven
2/24/2014 1:03:18 PM by: pam
Keeping it Together - part six
2/10/2014 8:20:16 AM by: pam
A Milestone Day
2/3/2014 8:13:17 AM by: pam
Keeping it together - part five
1/21/2014 6:43:18 AM by: pam
Keeping It Together - part four
1/3/2014 7:56:02 AM by: pam
Keeping it Together - part three
12/16/2013 7:34:46 AM by: pam
Keeping it Together - part two
12/9/2013 6:30:25 AM by: pam
Keeping it Together - part one
12/5/2013 8:00:03 AM by: pam
Catching Up
11/13/2013 8:22:00 AM by: pam
The Perfect House
10/25/2013 8:06:56 AM by: pam
Another Mom in the Mix
10/7/2013 3:11:58 PM by: pam
Grieving the Loss
9/24/2013 8:39:13 AM by: pam
Great article
9/11/2013 1:06:06 PM by: pam
This and That
9/9/2013 4:09:18 PM by: pam
Fun in the ER
8/30/2013 9:17:32 AM by: pam
Bless me, Anna!
8/14/2013 1:51:41 PM by: pam
Talk to me, Anna!
8/8/2013 5:04:30 PM by: pam
God's Will
7/30/2013 3:13:08 PM by: pam
Update on Anna's bloodwork
7/24/2013 6:31:05 AM by: pam
Stirring the Cesspool
7/11/2013 6:27:11 AM by: pam
Vacation and Other Fun Stuff
7/3/2013 5:46:28 AM by: pam
A Day at the Beach
6/17/2013 8:05:05 AM by: pam
Anna's Surgery Experience
6/5/2013 12:03:49 PM by: pam
No Place For Anna
5/26/2013 8:27:52 AM by: pam
Painful Gifts
5/21/2013 8:56:57 AM by: pam
Happy 22nd Birthday, Anna!
5/15/2013 6:48:55 AM by: pam
A Rough Day
5/6/2013 6:18:44 AM by: pam
Things I've Learned - part five
4/30/2013 8:02:08 AM by: pam
Things I've Learned - part four
4/22/2013 6:51:41 AM by: pam
Things I've Learned - part three
4/15/2013 6:14:06 AM by: pam
Things I've Learned - part two
4/9/2013 7:40:11 AM by: pam
Interview with Terri Groh
4/5/2013 5:44:08 AM by: pam
Things I've Learned - part one
4/3/2013 7:55:42 AM by: pam
The Things People Say - part eight
3/27/2013 6:06:08 AM by: pam
Comparisons
3/18/2013 8:06:43 AM by: pam
Why Is It A Blessing?
3/11/2013 6:24:04 AM by: pam
Tim's Place
3/8/2013 11:57:02 AM by: pam
New Medication Worries
3/5/2013 6:38:36 AM by: pam
A Night Out for Anna
2/25/2013 11:29:44 AM by: pam
Play it again, Sam
2/20/2013 5:47:32 AM by: pam
Happy Birthday
2/15/2013 5:32:13 AM by: pam
The Anna Bowl
2/4/2013 8:01:33 AM by: pam
The Queen of Babble-on
1/30/2013 12:45:36 PM by: pam
Really, people?
1/25/2013 7:36:11 AM by: pam
Cold Feet
1/23/2013 7:55:46 AM by: pam
Hearing God
1/15/2013 6:58:57 AM by: pam
Running Away
1/10/2013 11:19:00 AM by: pam
Post-Christmas-Reentry-Syndrome
1/4/2013 6:49:36 AM by: pam
Emmanuel, God With Us
12/17/2012 6:51:08 AM by: pam
Take Heart
12/7/2012 4:42:07 AM by: pam
Jumping in the Leaves
11/27/2012 5:56:16 AM by: pam
Being Thankful
11/19/2012 7:02:07 AM by: pam
Patience and Love and Wretchedness
11/13/2012 7:38:47 AM by: pam
A Typical Halter Vacation
11/8/2012 8:35:45 AM by: pam
Is This Really My Life?
11/1/2012 5:21:04 AM by: pam
Frankenstorm
10/27/2012 4:22:45 PM by: pam
A Small Victory at Anna's Program
10/24/2012 7:21:36 AM by: pam
Update on the problem at Anna's program
10/22/2012 8:23:51 AM by: pam
The Fight Goes On
10/19/2012 4:55:06 AM by: pam
Fighting the Good Fight
10/18/2012 7:01:44 AM by: pam
Sit down, Anna
10/16/2012 6:44:47 AM by: pam
The Things People Say - conclusion
10/15/2012 8:32:45 AM by: pam
The Cloaking Device
10/12/2012 6:22:27 AM by: pam
The Things People Say - part seven
10/11/2012 5:56:56 AM by: pam
The Things People Say - part six
10/10/2012 5:35:53 AM by: pam
The Things People Say - part five
10/9/2012 6:59:06 AM by: pam
The Things People Say - part four
10/4/2012 6:00:52 AM by: pam
The Things People Say - part three
10/3/2012 6:09:22 AM by: pam
The Things People Say - part two
10/2/2012 5:29:13 AM by: pam
The Things People Say - part one
10/1/2012 7:52:27 AM by: pam
Godzilla Lives at my House
9/27/2012 6:58:41 AM by: pam
The Early Bird Gets Eaten
9/26/2012 5:22:30 AM by: pam
Over and Over Again
9/25/2012 5:15:50 AM by: pam
What Good Are Seizures?
9/21/2012 11:48:29 AM by: pam
Why Me?
9/20/2012 8:37:32 AM by: pam
The Rest of my Life?
9/19/2012 5:47:36 AM by: pam
Feelings
9/18/2012 1:23:56 PM by: Pam