Moving on to Plan B

 It has been a little while since I updated and things have improved a teeny bit here. The Keppra that we started on at the beach has reduced the length and intensity of the clusters of spasms. Unfortunately, she still has the clusters 6-8 times a day and the Keppra does not seem to help the single spasms that throw her to the floor at all. At this point, in order to say a medicine is truly working for her, we have to stop the seizures altogether. So we are moving onto our plan B from the last Neurologist visit. The dreaded ACTH.

It arrived yesterday on ice. So now we have close to $100k in the fridge. I liked the invoice which said “patient responsibility $9.00, insurance pays $97,722.30” Holy cow, that is outrageous. At that price (and given that I have to stick a huge needle into her thigh muscle twice a day) it better work!

She just had her first injection here at her oncology clinic in Charlotte, so tonight will be my first time giving it. Like the steroids she has been on before, this should increase her appetite and make her very irritable. It will also likely make it difficult for her to sleep. It also suppresses her immune system so we will be basically housebound like when she was on heavy chemo. Last time she was on steroids for a long time, she ended up in the PICU with septic shock, so we will be incredibly vigilant this time.

Please pray for this to work for her. She has now been having seizure activity for 6 months and we desperately need to put a stop to it so she can begin developing again instead of regressing.

I added a few new pictures from a few days ago too. Click on the Photos tab at the top.

Love to everyone,
Liz, Brandon, and Maddie

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14 thoughts on “Moving on to Plan B

  1. I went and bought a fake hand just so I could have extra fingers to cross for you all.

    Well, not really, but it SOUNDS good, doesn’t it?

    Maddie’s in my thoughts….

  2. I am SO SO sorry. We’ve been there – done that with ACTH. Twice.

    I know many people hate it. And I certainly hate aspects of it. One being the freakin’ UNgodly price…for a drug that is NOT a cure.

    But…it does work. Sometimes. It gave Trevy eight months of seizure freedom. So I’ll always be an advocate of giving it a go. And I’ll be hoping like crazy that Maddie is one of the sometimes kids!

    Warmest wishes…

    …danielle

  3. Hello,

    I came across your blog from someone else’s site and I hope you don’t mind my post. Charlie was diagnosed with IS last March and was immediately started on ACTH. He responded well to it, and I am praying that Maddie has the same response.

    It is a drug that made him very cranky and irritable, but it decreased when we weaned him off. He was weaned over a 3 month stretch.

    If you have any questions, feel free to email me at msalzman6@hotmail.com.

    Best wishes to you and your family,

    Molli

  4. We will pray like crazy for you and most especially Maddie.Little sweetheart has been through so much and she so deserves seizure freedom.Hated the stuff.Really did.But ACTH has worked for so many of these little ones and we will pray alongside you that Maddie is one of them.

    Love Heather and Zoey

  5. I am praying that this will be the answer to all of our prayers.
    As always, love the pictures. She is just as precious as ever.
    Love, Loretta

  6. wishing that i had a love/hate relationship with ACTH, but i really just hate it, BUT I’m praying that it is your miracle drug!! Little Maddie deserves a break from the seizures. Good luck with the injections, i’m sure you will be fine. At first it is the hardest part, but after a little bit it sadly just becomes part of your routine. We always did it first thing in the morning to just go ahead and get it over with. WE’re all here cheering you guys on!! {{hugs }} monica

    p.s. we are in the greensboro/high point area. =) so not too far from you guys..atleast until you move. we have a friend that is an OT in Jacksonville (or atleast in that area) if you need one once you move.

  7. I am hoping and praying that ACTH is the answer for little Maddie.

    Isn’t it crazy when you get a package at your doorstep worth that much money?!?! And then on top of that you have to inject it yourself into your child…twice a day!!!

    I know within the circle of blogs that I read that you don’t hear a lot of success stories with ACTH but I think it is because the ones that are successful move on to live a relatively normal life and are never heard from. So I thought I would include a link to a blog where ACTH is successful…and they started it about 6 months after their daughter started having seizures…not sure if you ever read their blog but just in case…

    http://kelliandmarktenhaken.blogspot.com/

  8. Liz – Thinking of you, Brandon & Maddie tonight and everyday. Hoping to get an update soon that the newest treatment is working. LOVE the pictures – Maddie is one gorgeous little girl!
    Lots of love,
    Carrie

  9. Lost my blog list and finally found my way back.See you haven’t posted in a bit and knowing this time,this medicine,is hairy.Prayers for Maddie and peace to her body during these days.

  10. Hey Maddie and Liz, just checking on you. I know you’ve been at the ACTH for a few days now. I just wanted to see how you are and to let you know that I am praying for you during this time. Try to enjoy some “fun” time together while you can.

    Love ya both!
    Bec

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