Samsmom: Life, Joy, Loss and Loving your Mitochondria

You don’t have to see the entire staircase, just take the first step….Martin Luther King Jr.

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This is not our first step….perhaps our 20th but I still do not see the entire staircase. In fact, just when I think I can see the staircase, it becomes like those in the Harry Potter books…the staircase is always changing…keeping us on our toes.

Samantha went in for a follow up blood test today only to reveal that her metabolic levels are higher than last week. They went down when she was fasting but went right back up once we started back on formula. Her digestive system is struggling, her pancreas is working too hard.

The culprit? The ketogenic diet. This is a tough one for me. The ketogenic diet controls or helps 60% of kiddos with seizures. Those 60% either become completely seizure free or, in Samantha’s case, have good seizure control with diet and reduced meds. But the diet is hard….hard to manage and even harder on Lil’ Miss’s stomach. For two and a half years, her meals have consistented of olive oil, hard boiled eggs and the tinest bit of carbs where we can squeeze it in.

It’s hard on the liver, kidneys and pancreas.

BUT it controls seizures. Hard choice to make, eh?

I have said “hard’ seven times in this post……

Tomorrow we go back in for further testing. Tests will confirm one of two things:

1. Everything is fine. Her pancreas is plugging along. No changes.

2. We need to stop the diet. It is a strain on her organs. If we do stop, Samantha will be admitted tomorrow evening. She will be put on I.V meds, placed on an EEG and weaned off the diet.

We will watch to see if she seizes or perhaps(?) does not seize. We will also watch to make sure metabolic levels normalize.

What do I want? Ha! As I take this next step…unsure of what lies beyond, I only, truly want Samantha to be healthy……my list of healthy wants include seizure free, healthy blood levels, and a little girl who is not dopey due to too many seizure meds.

Tall order? We’ll see….I’m just taking the step.

4 responses to “You don’t have to see the entire staircase, just take the first step….Martin Luther King Jr.”

  1. Deana Avatar
    Deana

    Ugh…I am sorry. We have always had the diet in the back of our minds as an option for Max. But, he is pretty well controlled on the medicine he is on, and I've always been so nervous about the metabolic side to start it. I hope her levels have normalized enough tomorrow to keep giving it a try. And if not, well, I hope it did it's magic and you won't have to stay long.

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  2. Maria Avatar
    Maria

    Oh Heather – I just e-mailed you to see if you were admitted today or not. I was SO disappointed when we couldn't put Jacob on the ketogenic diet, SO disappointed. But now I have a kid with “fairly” good seizure control, not sedated, and thinking it's ok. It's not what I wanted in December, but it's still ok. We might still try the diet, if Jacob ever gets to a place of being not sick for a longer period of time. Knowing all the metabolic concerns that are there.I can only wish tonight that she can continue on the diet, since it seems to have been working for her, and truly helped her seizures.If not, please work with Dr. Koh on alternative seizure meds. We love rufinimide (it's a fairly new one), and it has made wonders for Jacob's seizure control. I am not even going to count all the other ones he's on…So thinking of you tonight. I will see you tomorrow for sure.Love, Maria.

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  3. Amanda Avatar
    Amanda

    I will call when Joe gets home. Remember…it has been 2 years since you tried with out the diet. She is a bit older, maybe different med combos will bring you different results. Keep your chin up! I'd love to bring you supper over the weekend if you are stuck on the 8th floor. Miss Sammers – we will hold you close today and you give your momma something to smile about!

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  4. Fawn Avatar
    Fawn

    Oh, this is all too familiar. My Jade is back up to a 5:1 ratio now. We had to take her all the way down to 4:1 for a month because her liver was starting to fail. I have to go do bloodwork with her this upcoming week to see how she's handling the return to 5:1. Keto is the ONLY thing that has ever worked for Jade and we think she might even be seizure-free at 5:1 (hard to tell because her last remaining seizures were in sleep)… but the other organs are pretty critical, too! My fingers are crossed for you and Samantha. *hugs*

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Hello,

I’m Heather

Welcome to Samsmom and over 15 years of stories about love, loss, grief and the process of moving forward. It’s not always pretty here, but it’s honest. I’m a writer, a fund raiser, rare disease advocate, Mom of two Littles who are no longer here, Wife of Hubs, Aunt to the Phews, daughter, friend and unapologetically me.

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