Life After NICU

Dear Seizure Meds, What Have You Done With My Sweet Child?

I adore my little guy and love him more than anything. He is the reason behind every single thing I do. I love exactly who he is and am so proud of everything he has accomplished. But some days with James are particularly hard, like yesterday.

James has been challenging from the beginning, really since pregnancy. He makes us work for it, and I’m good with that. He has pushed me to learn and grow in ways I wouldn’t have without him. We’re up for the challenge and face it head on every day. There is no other option. But if we have many more days like yesterday I truly don’t know how we’ll get through them.

My Wiggly GuyJames is smack in the middle of a side effect of Keppra described by some as “Keppra Rage.” James is taking Keppra to control his seizures, which it is doing beautifully. He began taking it just over a month ago. His previous med wasn’t working anymore and Keppra is his new neurologist’s preferred medication. It is the most effective seizure med with the fewest side effects, according to his doctor.

After a couple of weeks on Keppra James began to have more aggressive behavior and couldn’t focus as well. We talked with his doctor, who suggested we change his medication. Then James had some good days, and Keppra was controlling his seizures, so we stuck it out. Then he had some not so good days. We had an appointment with his neurologist, medication change (which happens over several weeks for those who haven’t been through a change of seizure meds before), and some really bad days. Yesterday was a really bad day. He is currently still on his full dose of Keppra while his new medication is slowly introduced, then Keppra will be slowly weaned. It will be 23 more days before James takes his final dose of Keppra. Twenty-three days, and yes, I am counting.

I hate this for James. I can’t imagine how bad he must feel inside, to be acting out the way he is. He’s a pretty roll-with-the-punches kind of guy most of the time. He puts up with a lot because he’s had to his entire life. I’ve never seen him like this. His mood changes in the blink of an eye, he hits and kicks all of us, hits himself in the face, bites his hand and fingers, screams at the top of his lungs, flails around on the floor, shaking his head back and forth. The little boy who loves books can’t sit to have a story read to him right now – he stands with his body in constant motion. He can’t focus for more than a couple of minutes, even on things he loves.

It takes all three of us to get through the bad days. Even though I know this isn’t him, it’s beyond frustrating after a few hours of trying to handle these behaviors. I have definitely not been Mom-of-the-Year on days like yesterday. I know others could handle it with much more grace and understanding. I’m just trying to survive. This is definitely not my strength. I’m so glad that Daddy and Grandma are there when I need a few minutes. It’s hard when none of the usual tricks work to calm him and almost nothing makes him happy. Challenging? Yes. Learning a lot? Yes. Wanting our sweet little boy back? YES!

Thank goodness not every day is like yesterday. And I’m truly thankful for Daddy and Grandma. Working together we’ll get through the next 23 days.

 

 

 

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16 thoughts on “Dear Seizure Meds, What Have You Done With My Sweet Child?

  1. You have far more insight than the average person, Alison! I know it is a challenge and I know it’s frustrating. Just hang in there, and with Andy and your Mom you will all get through this together! Prayers for you all, for the strength and patience you will need! 🙂

  2. Sorry to hear youre having such a hard time right now. At least you know it will be better soon and James will be his “old self” again. Any wanted you to know my prayers are with you each and every night.

  3. I am so sorry yesterday was not a good day for all of you. And thankfully there is a team of you to work on this together……You are allowed to cry, stomp your feet, scream, all at the same time if you want too! You are a GREAT mother, and even great mothers can have not so great days. Praying those “read to me” days are back soon……Hugs, prayers and love to all of you!

    • Thank you Debbie! I’m so glad Daddy and Grandma handle all of this well. They are shining through and dragging me along. 🙂 I know there are much worse things we could be dealing with right now, so I count my blessings. Can’t wait till my little guy is his old self again though.

  4. Big hugs, mama. I can only imagine how heart wrenching this experience must be, and unfortunately it sounds like another one of those “hang in there” moments when all you need is an easy “everything is awesome!” moment. I hope that relief comes soon, for both of you!

  5. I have been on quite a few of the Anti-seizure meds for tremors. YIKES!!! I feel for YOU and James!!! I KNOW HOW IT FEELS!…Just cannot, cannot, cannot, be still, All things have pretty much been leveled out for me. I just know what to take, when, ON TIME, and that makes for a good day. So I have sympathy, I guess you could say, but I really have EMPATHY!!! Hang in there (silly cliche’!!) But when he is soooo wiggly, see if a tight hug, holding his hands in yours, kiss, “I love You!”. and see what he does. Now, knowing all 3 of you. You HAVE done that. But I know it is nice to hear when you have Side Effects , and no one is here. Love you all, Aunt BJS

    • Thanks Becky! You’re right, we’ve done the tight squeezes. We have quite a little variety of calming tricks and can usually find one that works. Sunday was just a really off day and nothing made him feel better. Thankfully he’s had better days since then. Maybe his body is adjusting? Whatever the reason it seems to slowly be improving. Thanks for thinking of us!! Love and miss you!

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  7. My son has multiple disabilities he is 20 and has had epilepsy since he was 15. We’ve been through 3 seizure meds so far, and they all cause rage. He’s on one right now that controls his seizures but the rage is getting hard to live with. He’s been hospitalized before for this(I had to fight hard to get him hospitalized). Every day I’m just hanging on. We’ve been trying to get help but no one really helps. We’ve got an appt.to try to help him but I’m afraid it will be a slow process. My husband is quitting his job soon because I need the help. I have another son who is autistic(my other son is as well). Which is another issue entirely. I guess these experiences are supposed to make you strong I don’t know. Hope things have gotten better for you.

    • I understand just a little about the rage. They did change my son’s meds and we haven’t experienced any med related behavior issues since. I can’t imagine having to handle that all the time. I learned about ‘Drug-Resistant Epilepsy’ recently at work. Have you looked into VNS Therapy? I don’t know much about it, but it might be something that would help you and your son. I hope things get better for both of you soon!!

      • Thanks he started a med for his behavior. The seizures are well controlled with his meds so we can’t change it. We’ll see how it goes.

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