Testing blood ketones and glucose has been a part of our lives for the past decade. With a few small changes to our system, Charlotte has achieved independence with blood glucose and ketone testing management. When she first began a ketogenic diet to help manage seizures related to Dravet’s Syndrome, we did all the testing for her. She has always been super compliant and never complains about needing to prick her finger. Even when testing 4-5 times daily.
Now that Charlotte is well into her teenage years at 15 year old, she has become quite independent in many ways. Independence, especially for daily living skills, is always something we are always working towards. Learning how to test, track, and manage her ketones and blood glucose was a huge step for her. Quite honestly, most of the learning took place at school when she would stop in the clinic and test prior to lunch. I was grateful for the school nurse who was patient and supportive, but also encouraged her to do everything herself. Naturally, these skills carried over to Charlotte’s home life and she began expressing her desire to do everything on her own. Of course, me the ever persistent helicopter mom, took longer to accept that she was in fact, fully capable of testing on her own. Successfully!
In hindsight, if I had encouraged her sooner, and set her up for success with a good routine and system, she would have been able to master this much sooner. Why do mom’s always put so much on their own shoulders?!
Break Down the Process Into Small Steps
If you are interested in moving towards independence with testing, break down the process (also called scaffolding) into many little steps and focus on mastering one skill at a time. What seems like a simple straightforward process to an adult, actually is quite complicated. Testing blood glucose and ketones requires good organization skills, multitasking, fine motor coordination, and many other executive functioning skills. In my experience, it’s better to practice the same skill every time until mastered while never pushing too hard. Just pay attention to when your keto kid is in a receptive mood and use lots of encouragement! All these small steps build up to proficiency over time.
- Gather the needed supplies
- Open the test strips
- Place the test strip into the monitor
- Open or “charge” the lancing device
- Lance their own finger
- Squeeze or massage the finger to produce enough blood
- Place the blood droplet on the strip
- Practice reading the numbers on the monitor
- Find the correct place in a log book to record data
- Record data in a log book correctly (decimals, multiple zero’s, and not reversing number order is challenging for many kids!)
- Cleaning up! (It is VERY important to learn what is trash and what is not – because I have never found an entire strip of unused test trips in the trash 😱)
The Key to Success
The key to success for Charlotte has always been clear written instructions, organized materials, and repetition of routines. Over, and over, and over again. In this case, we wrote down these steps for her and she follows the same process every single time. Beyond my reminding her to test prior to her meals, she is 100% self sufficient at this point.
- Wash hands
- Open both test strips
- Prick your finger
- Purple (ketone) strip first
- Blue (glucose) strip next
- Clean your finger
- Write down your numbers (she knows how to look back in the monitor if she forgets.)
- Take MCT oil
- Time to eat
Make Supplies Accessible
For the majority of the past 10 years, our testing kit has been stored in an upper kitchen cabinet along with her medications. This cabinet is not accessible to her, and the medication bag which contained the testing kit is locked. So I decided to clear out a kitchen drawer and create an accessible location for her to store all her testing supplies.
This system has worked out beautifully! Not only is she able to self test her glucose and ketones, she is able to record the data and take her syringe of MCT oil before each meal. This has been a great experience for all of us. Charlotte feels proud that she does not need my help, and I am happy to let her take on this responsibility.
Both of us like the Pip lancets. These are really easy to use and she does not need to worry about changing the lancets in a reusable lancing device. Small changes like using single use lancets helped make this process easier for her. They are virtually painless as well, the Ultra Sensitive ones work on both of our fingers. I found this really cute log book with a simple format inside that she is able to follow. We use a paperclip to keep the current page easy to find. The book does not have dedicated space for glucose and ketone readings, instead it has “before” and “after” column for breakfast, lunch, dinner, and bedtime. Charlotte writes her glucose reading in the “before” column, and her “ketone” reading in the after column.
After she tests and records the data, Charlotte takes 10 grams of MCT oil. This amount of oil is factored into each of her meals and it part of her specific diet. Since she is always testing right before a meal, this is the perfect time for her to take the oil. This will not apply to everyone! However, I highly recommend learning how to take oil by syringe. Here is a video that I filmed with the Charlie Foundation about six years ago of me and Charlotte demonstrating her skills! She was so tiny and cute 😍😍!
I can honestly say that since she has been testing on her own, and not relying on me, we have more consistent data than ever before. As mom life goes, I would often run out of time or forget to test when we were supposed to. Since Charlotte is a creature of routine, she NEVER forgets. Especially with the holidays right around the corner, this is the time of year where we would often become the most disorganized and forget to test when we were supposed to. It’s a win, win!
Make a Travel Kit
Prior to COVID, our family did a lot of traveling. Right after I set up her kitchen drawer, I also made a version to take on the road. I put all the same supplies in a plastic storage container and it makes life much easier than dealing with bags. Why did I not think of this sooner?!
I hope this information is helpful to someone! Please let me know if you have a system that works for you. In a future post I will explain how we manage her medications and have moved towards independence in that department as well.