Thankful

This one is guaranteed to be a disorganized jumble…

We got home yesterday after doctor diagnosed our 12 yo with idiopathic seizures– meaning he didn’t know what caused them. I told him I was afraid he was going to say that but he said actually that is the best kind to have because that means our daughter doesn’t have anything obviously wrong with her except for the fact that her brain electricity is misfiring at times.

Doc gave her a greater than 50% chance of outgrowing this, and started her on Keppra, which he said has very few side effects and works really well for lots of kids. Once she has gone two years without seizures, we can talk about gradually weaning her off. As a dedicated google junky, I of course had to look the drug up. Depending on who you talk to it is either a wonder drug or one that makes people into moody zombies. Lovely. Decided to trust the doc God and jump in, because the alternative (2-6 seizures a day) is not pretty. And we can always play with drugs to find something else if this doesn’t work for her.

By the end of Monday our weekend of little sleep in the hospital plus the loading dose of medication was getting to her. We had some rather unhappy moments before I summarily sent her to sleep it off. And I was feeling very down and overwhelmed myself. The last thing a moody 12 year old needs is a drug that makes her moodier. Eek, eeek, eeek.

I then went off to Walmart to get her meds, only to discover that a 60-day supply costs– get this– $300!!!! Just incredibly awful. Got home and very soon after sent MYSELF to bed to sleep it off.

And, glory be– we made it through the entire night with zero seizures. For the first time in a week.

This morning I was catching up with bloggy friends and found this post from Carrien. So here are the things I am thankful for:

1. That my daughter made it through the night with zero seizures.

2. That our insurance makes it possible for us to pay only $20 for $300 worth of medicine.

3. That our daughter is here in America where her seizures can be treated.

4. That our other children did OK while I was gone over the weekend.

5. That God loves my kids more that I do and He is able to make my feeble efforts enough. Even when dealing with a certain cranky, hormonal, medicated 12 year old.

And here are the things I am praying for (in case you want to help me out in that department.)

1. That my daughter’s meds will stop her seizures without scary side effects.

2. That yesterday’s crankiness will turn out to be an abberation rather than the new norm on medication.

3. That I will have grace to deal with any less-than-sweet attitude. From anyone, not just her. Y’all may be familiar with the way kids decide to melt down all over the place when mom has been away for a few days.

4. That my family will be well and happy while I am at Blogher this weekend, and not melt down AGAIN after I come home. I am almost never away from my family, and so 4 overnights in 8 days time is highly unusual and won’t be super-easy for anyone. I am especially praying my wonderful hubby will have a smooth and peaceful time. I feel a little selfish at still planning to go, esp. after events in the past few days. But hubby has lots of support at home. And selfish or not, I am SO READY to GO!

{ 30 Comments }

  1. Mary, it just dawned on me that I know a handful of kids (including my sister) who started getting seizures around puberty, and then grew out of them. Some of them are still on medication (in their early adult years), but they have all been able to do normal activities. Hopefully this is just “one of those things” and she will grow out of them quickly. PTL for insurance!

  2. My 16 year old had an eye appt last Thursday, an emergency appt was made for her at a neuro-opthamologist yesterday. Needless to say, I was freaked out. At one point in time on Sunday afternoon I found myself stressing over how we could possibly handle another medical issue when I thought, Be still and know that I am.
    Long story short, my daughter is fine and yours will be too. You and I will handle anything that is thrown in our path because we don’t have to face anything alone.

    Hang in there!

  3. God knew all of this would happen and He has given you provision. He knows you need a break!

    Kisses to you as you travel, and kisses to those that you are leaving behind.

  4. Well, Effexor used to make me a moody zombie, but now that I choose to take ownership of my feelings, thoughts and actions, it works like a charm. Of course I’m a little older than 12 but still, moodiness is something she can work on, seizures aren’t.

  5. I think I posted before that our 7 yo went through this when he was 21 months. The meds in the hospital plus the loading dose of medication (he was on phenobarb) made for one sleepy and crabby bubba. After a week or so on meds he started becoming himself again, although he started napping more. Definately a change, but once he was on medication for a month or so I didn’t notice any difference. Same with weaning him off of it.
    Praying for you and your daughter. I’m thankful too that she has such a great family with resources to help her through this, as well as such great faith. Blessings to you and yours, Mary.

  6. Oh, I do have to say I think Keppra is one of the tamest in my whole experience and my son had little side effects while on it and successfully weaned from it with no problems whatsoever! Praying for you.

    Steph

  7. Watch the meds–I am not sure with that one but if she gets ANY rashes tell the doctor–Steven Johnson Syndrome is triggered by many anti-seizure meds and IS deadly (we are still living with the damage it caused Rach.)

    Also, most make it hard to tell when hungry–she will likely want to eat constantly–Rach gained a ton when she went on the meds and when she came off them had to learn what it felt like to be full again.

    Praying.

  8. Praying that you get some rest this weekend while running ragged at BlogHer … I’m glad that you have some direction, and pray that she gets through this (and all of you) quickly 🙂

    God’s grace. How would be get through life without it?

  9. I’ll pray for them.

    GO and enjoy yourself. They are in good hands. 🙂

  10. Mary, I totally understand the desire to have something definitive to name the seizures by… I know I would feel the sme way! But I am glad to hear that there is nothing definitively sinister at work, either.

    What a week you have had! I pray all will be peaceful at home in your absence and that you will have a rejuvenating time at BlogHer!

  11. As many have said before, as a mom who has walked this path, I can say it gets easier.

    My daughter as well has seisures that no one can explain why. And although she is on different drugs than yours, and the possibility of side affects are scary, know that it becomes easier, less scary and then just life.

    My daughter has been sieusre free for 1 year and 8 months, and that happened when we finally got the dose right. In November we will begin to wean her off if she stays seisure free.

    Just know that a complete stranger in Canada in thinking of you and recalls the shoes that you are now walking in.

  12. This post brought tears to my eyes. I feel like I am dealing with a lot but it is nothing compared to this. I love your thankful list, and the things you are praying for. I will pray for those things for you as well.

  13. Enjoy the break that God, in his foreknowledge, planned for you to have!

  14. Sorry to hear about the seizures. My daughter was on Topamax for migraines and I can’t remember if that’s a seizure drug or not, but she only had 2 doses and she stumbled around, laughed and cried at the same time, could not think well enough to do simple math problems, and couldn’t remember her little brother’s name. It is wise of you to pay close attention to how she responds to the medicine. Praying for healing,
    Andrea

  15. My daughter was on Keppra, and while it didn’t leave her cranky and moody, it really messed up her sleep cycle. She was only 4 when she went on it and has many many other issues that mean that we can’t just say “be quiet and go back to sleep!” I endured 2 years of it before we finally got to try weaning her off. She is now on a different med and sleeps great, so I wish I had pushed harder to change the med when she had so many problems. You do have options if this one just doesn’t work well, so don’t hesitate to ask for something else if it turns out you and your daughter just can’t live with Keppra.

  16. I appreciate your post. After a stressful day myself, a reminder to count my blessings is what I needed to hear. You are right, God loves your daughther more than you, and I bet after a few days of getting back on schedule you both will be better able to deal with life. : ) I lift your family up to God today- knowing that He cares for all the details in your life and my own. God bless you!

  17. kazzles says:

    I’m glad to hear you’re home and praying that the side effects of the meds are not too bad. I have been spending a lot on medication myself lately and complaining so much about it, but hearing the cost of the drug in the States has made me feel guilty for complaining.

  18. That’s the great attitude, Mary! When you’re ready to cry or throw in the towel, think about the ways that God has already taken care of you!

    I could use that lesson myself.

    Still saying a prayer for you all. And have a blessed time at BlogHer!

  19. Be careful with the Keppra. When we looked into it we found a high suicide rate. Eventually we tried it because we were running out of options. My loved one actually scared me after a short stint on the Keppra.

    I hope that your daughter recovers well and the seizures disappear for good.

  20. your family is in our prayers

  21. YES! Thankful with you!!!! So, isn’t this the same thing as epilepsy?? That’s exactly what they told us about Samuel, and when you read about epilepsy – it’s just that….an uknown medical reason for 2 or more seizures. He also is on med for 2 yrs, at which point we’ll start weaning him IF he stays seizure free. Praying for your girl!!!!!

  22. Such good news. I am keeping her in my prayers, as she adjusts to her medication. That can be a trying time for anyone, especially a young teen.

  23. Kris Long says:

    I had unexplained fainting spells for 25 years of my life and by the grace of God the issue was finally solved 5 years ago. If you do not have success with the meds for your daughter and you want to research other possible causes feel free to contact me. Ends up it was my heart after all the years of the docs. studying my brain. Very cool story.

  24. mary – i hope you have a great time. you deserve every moment of the experience at blogher. i hope you get to live in the moment as much as possible – even though you may be thinking a lot about everything at home. enjoy, hugs, and prayers. xo

  25. As the parent of a 12 yo girl who uhm is lucky to have made it to 13….I would imagine it might be difficult to separate the normal moody thing from the possibly-drug-induced moody thing. Also could bet it is not easy at any junction for *her* — she has been through so much. But she has YOU, Mary…and your husband…and a big supportive family and good and wonderful doctors.

    love will abide, no matter what…it’s all good

  26. Praying for your family–and wisdom for you and your husband as you handle the circumstances and decisions coming your way.

  27. Mary, I’m so glad. And it’s not selfish to want a few days off! You’ll feel refreshed and better equipped to deal w/ things when you get back.

  28. Somehow I missed the update. Glad to hear your daughter had a good night. Keppra was the first medication Ethan took.

    I’m so glad you are still planning to go to Blogher. Enjoy! I will say a prayer for you and your family.

  29. I’m soo glad that you have some hope in this. And I’m soo glad that you’re going to BlogHer. I will pray for both you and your family to have a wonderful next couple of weeks. 🙂

    (Sorry I’m late responding…haven’t been on the computer since last week)

  30. I came over to check on your daughter. I’m glad the meds appear to be working. Praise God. I’ll keep praying. My twin sister has dealt with seizures and I can tell it is hard on her. But, she is a tough cookie.