Playing Doctor

Sometimes I feel like after going through all this I deserve an honorary degree in childhood leukemia. I am even beginning to get really familiar with childhood neurology. These are not subjects I ever wanted to learn much of anything about, at least not through firsthand experience.

Maddie is still having tons of seizures a day (over 100 everyday!). We are at a point now where we have to decide if anything is working or if both seizure meds are complete failures and we should wean off them. And Maddie’s neurologist thinks I am most qualified to make that call. I agree with him that I know what is happening with her better than he could. But how can I know what is better or worse? Her seizures are definitely changing; they are occurring less in clusters and more in single spasms throughout the day. Is that better? I don’t know. To me it means there is no single minute if the day when I can feel safe that she won’t have one. But the clusters seem to wipe her out whereas she immediately recovers from the single spasms. So is this an improvement? When I watch my child have hundreds of seizures a day, it is hard to imagine that anything about it is better. This should not be my call……

Hopefully we will see the Neurologist later this week or next week and maybe he will be able to see something I can’t. But we probably need an EEG to be sure.

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9 thoughts on “Playing Doctor

  1. It’s a double edged sword isn’t it? You see her every day, and they do not, but it is very odd that you have to make the call alone. That is strange to me.

    We had an appointment today that I need to write about, just haven’t mentally figured out how to put it all into words yet, but a part of it has similar flavor, about parents versus the docs and who should be making the decisions and how should those decisions be arrived at. We are making some med changes though.

    Where is the medicine history on Maddie as far as the IS treatment? I can’t locate it. Can’t remember what she is taking for the IS or has taken in the past.

  2. Dear Liz,
    My prayers are with you. You are being asked to use Mom Super Powers. But you have them. Not much is stronger than a mother’s intuition. I will pray for your wisdom and discernment as you face these difficult decisions. I have confidence that you will make wise choices (with the help of your medical team).
    Thinking of you and your precious child.
    And praying, praying, praying that y’all can catch a break…SOON.
    Lori

  3. Everything has to be a major decision. Don’t you miss the days when the most you had to think about was whether to have chicken or beef for dinner? Although Abigail’s issues are by far not as bad as Maddie, I understand. We make changes to her diet, meds, etc. but we can never pinpoint what is working or not working because there is no constant in her life so we never know what is causing her gut problems….did switching meds work or switching formulas?
    Good luck, i hope the EEG can bring some insight and I hope you find some time to watch Lost!

  4. I am so sorry you have to make this call, I know it is not easy. Just let God lead your heart and you follow. You are a great mom, and a very smart person and you will know the right thing to do. And Liz, remember just like before, don’t second guess, just know you have done what is best for your baby and trust yourself and God. As always I am praying for you guys and sending you my love.
    Gina Price (Shelbys mommy)

  5. Liz
    My heart hurts for you. What a horrible situation you are in.
    I know you are doing everything you can for your precious Maddie.
    I pray that God will give you and the doctors the wisdom to do what is best for Maddie and that He will give you peace with the decisions you make.
    Thank you for keeping us up to date on what is happening. Many people are praying for Maddie.
    Give your Mom a hug from me.
    Grace & Peace to all of you,
    Loretta

  6. Our thoughts and prayers are with you, Maddie, and Brandon daily. You will be given the strength and wisdom at the correct time to make the decisions you need to make. You, Liz, constantly amaze me and I am so proud to tell my friends and coworkers about my wonderful niece who is such a wonderful mother and fighter for her beautiful, amazing, and strong little Maddie. I was so glad to be able to see Bea and actually hug her. There is something special about physical touch. I look so forward to the day when I can give you and Maddie and Brandon “big hugs and loves” as Kimberly calls it. Thanks for keeping us informed. Love, Laura and Robert

  7. Your beautiful little Maddie is constantly in our prayers. We are also praying for you to have the knowledge and strength to make these difficult decisions and for the doctors to determine how to make her better! We are thinking of you all….

  8. I was going a little mental this week. Because these decisions…that we truly are the most qualified to make…are flippin’ heavy! Huge! I never ever in a million years wanted to be making these kinds of decisions. Nothing about it is easy. I actually feel sick to my stomach…and utterly wiped out…with each med change.

    And now that I can be labelled as a total pessimistic boot…let me add…

    that NO single spasms…100 per day…is not better than clusters. Not if they tear your heart like they do mine. Not if it feels like your child is being eaten by an invisible monster from brain out with each one. It is NOT better in my book.

    But boy do I love my kid. And does he ever inspire me! How can they keep smiling? For us? When all I want to do is crawl back in bed most days…and hide under the covers?

    Ugh…

    Obviously it’s been a seizure hell day for me!

    And I keep reminding myself we’re not in this Alone…sometimes it helps. *smile*

    (((((hugs)))))

    Hopefully you can see the Rockstar and he can help easy the load…and give you some better answers!

    …danielle

  9. We continue to pray for Maddie and the rest of you too. She is so sweet in all of her pictures. Please keep us posted on how she is doing. I worry quite a bit about her.

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