Seizures, seizures, and more seizures

I usually try to be pretty positive in my postings here. That is perhaps why I am just posting today rather than over the weekend.

After arriving back in Charlotte Thursday, I had put back on my “I can do anything” face and was ready to start our next drug. Late Friday into Saturday, Maddie had clusters of seizures of varying intensity every time she was awake all day and night. Her super strong seizure rescue drug didn’t work. It gave her a 45 min nap and then she woke up clustering again. And for some reason the med we wanted to start her on was nowhere to be found (we wanted the brand name Zonegran in a small dose pill).

By Saturday evening the Zonegran was found and we also added in a little Klonipin just for good measure. I’m being a bit flippant and I think maybe the super high level of seizures lately has got me on edge. I came home from Detroit focused on the road ahead, and I got quickly derailed by a dramatic increase in seizures.

We are sticking with our plan though, and though I cannot say it has anything to do with the Zonegran, her seizures have been slightly improved yesterday and today. And we have not had a repeat of the Fri-Sat marathon of clusters. I’ve already stopped the Klonipin because it dopes her up terribly. I think we are back to the same seizure schedule we had pre-Detroit, which was not great at all, but is a major improvement over this weekend.

We will increase Zonegran this Saturday and the following Saturday and hope for good things. But if they don’t come, the ketogenic diet is waiting for us in the wings. It is an extreme commitment and has some side effects, but if it works it will be worth it.

Brandon will finally be home from California this weekend. I think that will improve my mood mightily. It has been a long five weeks. And seeing how long it has seemed with the seven month deployment looming……not encouraging. I try to remind myself it could be worse.

Maddie and I are still in Charlotte after returning here from Detroit. We saw her Oncologist Wednesday and will go back there tomorrow for an infusion of IVIG. Her counts yesterday were pretty normal, but her immunoglobulin level was very low. That is a component of blood which measures how much immunity she has to keep her from catching things. So we’ll get a refill tomorrow before heading back to Jacksonville. We also had a long appointment today with the dietician at CMC who will oversee the ketogenic diet if we go that route. With that out of the way, all we have to do is pick a date to go inpatient to start the diet. Yes, more hospital time. Perfect.

On a related note, swine flu is causing death in a disproportionately high number of young children with epilepsy, cerebral palsy, and other neurological disorders. For more info read this CDC release. So we are going to be laying low again for awhile. I am still trying to decide if the vaccine will be safe for Maddie (some vaccines are contraindicated for children with seizures). Even if it is safe, the vaccine only works if her immune system responds appropriately, and that does not always happen in kids who have recently stopped chemotherapy. So we may hibernate until this flu season has passed. She has not weathered all this to die of the flu.

I will try to have a more positive message next time I post. Especially since we actually have some fun plans for next weekend. I think I just need my hubby back.

Love to everyone,

12 thoughts on “Seizures, seizures, and more seizures

  1. You are a wonderful mom. I wish and pray every day for things to get better for Maddie. I am so glad you will have Brandon by your side soon. I know that will give you the love and support you need. Enjoy every moment with him. I know you will. Have a safe trip back to Camp Lejeune.

  2. I wish these stupid seizures would go away already. I feel so badly for you and for Maddie, having to go through this ordeal. Happy to read that Brandon will be coming home. It’s nice to have that support up close and personal and not clear across the country.

    I too am so worried about the swine flu this year. I’m a nervous wreck having Carly in school. Where parents insist on sending sick kids. Carly will need to be protected by the shot too. Due to her heart issues. I wish I could just keep her home and hide all winter.

    Keep us posted on Miss Maddie. We’ll be praying for some much needed peace for you all.

  3. Oh Liz,
    I don’t know how you can always be positive through all this. Let it out sister, you deserve to scream and yell every once and a while!

    I hope something works soon. You are doing so great through all of this. I don’t know how you do it. I’d be much worse off than you right now.

    I’m sorry we didn’t get to see you when we were in NC. Everything was so crazy when vacationing with 11 people! Things just don’t move like they should!

    And ugh…swine flu. I was never a germaphobe but after this lastest bout with RSV I’m ready to keep Abigail in a bubble!

  4. You post what you are going through and unfortunately things just haven’t been that great but that is reality (I am trying to come to terms with that myself). So I am hoping that you don’t have to “try to have a more positive message next time” but that it comes naturally since things will hopefully be better.

    Hugs and love…Elaine

  5. Positivity can be completely overrated.And … seeing the journey Maddie has been on,who would expect you to be?Hope that having your husband home,renews your strength and your spirit.I am sure it will do wonders for Maddie.For all of you.As for that report … freaked me out.We lost two little loves on the 4th floor in July from the swine flu,both had Down syndrome.Both were immunesuppressed big time.Zoey is no where near what her numbers should be to fight this thing,add her Down syndrome and the rest of her load and I believe it is reason for all of us to take notice.Praying that all of our children and all children compromised because of various issues can dodge,what is certainly going to be a difficult season.We just began to feel like we could venture a bit … so much for that!

  6. Had I been blogging while my son was in the midst of IS, I imagine my posts would have had the same tone. This life is stressful, we need to let it out. That’s why we blog. Don’t apologize for it. Those that read, get it and we don’t judge. Just make sure you post the positive too!

  7. You know how I feel, post away, even if it is negative. It’s cathartic to you in some way, so use it. Glad Brandon is coming home soon, but I too am worried about that deployment. You have family in place to help, but it will be tough. Is he going to be so deep that you won’t be able to communicate via Skype or phone?

  8. It’s almost impossible to come across chipper when the seizures are relentless. That’s where I’ve been as well. The increased clusters are almost always sure to put me in a funk that’s hard to turn around -unless they improve of course. I know we’re all pulling for SF, but after seeing a dramatic rise, getting back to the baseline average is usually comforting.

    Good luck with the Zonegran…and hope you have a wonderful reunion this weekend!

  9. Liz –

    Have a wonderful reunion weekend with Brandon. There isn’t a day that goes by that we don’t think of the three of you! And Maddie is always in our prayers.

    Beautiful pics of your family at Matt’s wedding by the way. You have one beautiful amazing daughter!

    Lots of love,

  10. Hang in there Liz, it’s going to all work out. The prayers for Maddie are being heard. She is going to beat this thing!
    Love to Maddie, you and Brandon,

  11. Wow! So much going on. No idea how you keep it together. My best to Brandon. Have a lovely reunion. Maddie you are one tough girl and I hope for a strong and healthy future that is free of leukemia, epilepsy and filled with joy.

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