Tic Tac Toe

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The twisted tale of Tacrolimus gets a new chapter today. Addison’s all-day blood test last Thursday had one of BC Children’s Hospitals super pharmacist/scientists working overtime through the weekend doing some serious number crunching.

The initial results showed some interesting findings with our little troublemaker’s Tac levels. Before her 8am dose, it was 5.5 (remember, the goal for first-year post transplant is around 10). Then here is how the rest of the day went:

9:00 – 5.8

10:00 – 6.2

11:00 – 6.9

13:00 – 9.5

15:00 – 10.1

It took Addison 7 hours to reach her peak level (which is actually the expected low level for transplant patients)! That is pretty unusual because you’d expect to see a spike within a couple of hours after ingesting a drug.

So what’s the bottom line? While the average Tac absorption rate for babies is 20%, which is already pretty low compared to other meds, turns out Addison’s only absorbing 3%!!! The other 97% seems to be going right through her and straight into the toilet. Now there is some talk of analyzing her poop, in the name of science of course.

This means we are trying something new…again. Thank goodness it doesn’t involve an extra midnight syringe. Her dose has been increased to a whopping 5ml twice a day. This is a HUGE dose. If she was a normal baby this would give her a toxic Tac level of 39. But as Addison has proven so many times before, she is anything but normal!

PS On another drug sidebar, tonight was the final dose of Keppra, the anti-seizure drug she’s been taking since the ICU. (Click HERE for the previous post.) YEAH!!!

Love,

Elaine, Aaron and Addison

5 thoughts on “Tic Tac Toe

  1. Hang in there guys… at least the mystery is getting closer to being solved…. thank goodness for BCCH and the health professionals in your lives… big hug and have a good day…. Cheryl Reg. Nurse and mom to Chris a great 21 year old with exceptional needs and an exceptionally brilliant personality and sense of humour :))

  2. So Glad they are getting rid of the one drug. And i know they will find the right dose. just sad she has to go through all the tests first 😦 Chin up to Mom and Dad. 🙂

  3. Oh boy!!!!! Well hopefully this is going to do the trick!!!! Will she be in the hospital all day so they can monitor the increase and see how she absorbs the 5ml? Good thing she likes the meds! I cannot believe she is rolling over! Yeah!!!

  4. Aloha Addison! I have sweet thoughts about you every day – even while on vacation in Hawaii. Hopefully you too will be well enough to travel, travel, travel. I just know that’s what Mommy and Daddy want for you too. It was a treat to wake up to your post. love you!

  5. Always think positive. You only have to look at our granddaughter Grace te Boekhorst. She will do fine just as Grace is doing. Just give it time

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