Basal Not Basil

Things I've learned while parenting a child with type 1 diabetes


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Loop

Any time I post about Hazel using Loop, I get a lot of questions. This is my attempt to answer all those questions in one post. 

What is Loop?

Loop is a DIY (do it yourself) hybrid closed loop system. It is comprised of a continuous glucose monitor (we use a Dexcom G6), an insulin pump (we use a Medtronic 723), a RileyLink, and an iPhone running the Loop app. Very simply, Dexcom sends the glucose data to the phone via bluetooth. Loop looks at the glucose data and sends a message to the pump to adjust the amount of insulin it is pushing. RileyLink is a little translator making it possible for the phone to talk to the pump and vice versa. You can read the complete history about how this came to be here.

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Here is a very poor drawing of how it works. I should say one of my children drew it, but honestly it would look better if any of them did. Art is not my forte.

How do you use Loop?

Loop is controlled completely through the iPhone. I enter all of the settings in the app (carb ratios, ISF, basal rates) and then it saves it to the pump. When Hazel eats anything, I enter the type of food and how many grams of carbs she’s eating into the app. It recommends a bolus based on her blood glucose level, the absorption time of the carbs, insulin already in her system, carbs already in her system, and her carb ratio for that time of day. Basically it does all the math for me. For foods that have a longer absorption rate (pizza, pasta, foods high in protein, etc) Loop will extend the bolus, suspending insulin delivery if blood glucose is trending down.

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This is what the Loop interface looks like. It’s so much better designed than any other diabetes tech I’ve encountered.

 How can I get Loop?

Great question! If you are interested in building your own system, I highly recommend joining the Facebook group Looped and following Katie DiSimone on Instagram (@kdisimone). All of the information about how to build the app and how to use Loop can be found here.  You can find which pumps are compatible, all available details about Omnipod Loop, and everything else you need to know about Loop. These documents are amazing. We refer to them often when we are trying to trouble shoot an issue. Sometimes I just read them for fun because they are that awesome.

When will a public (non-DIY) version be available?

I don’t know when, but Tidepool is working on a non-DIY, FDA approved public version. With Tidepool Loop, one could simply download the Loop app (as opposed to build it yourself) and a RileyLink will not be necessary.

Why don’t you just use the Medtronic 670g system?

When we first started Hazel on a pump this system was not an option for her due to her small insulin needs and age.  Now I believe it is an option for her, but not one we would be interested in pursuing. While it is great for some people, I think we would find the lack of customization frustrating. The 670g has two options for a target: 120 and 150. Also, with this system you have to use Medtronic’s cgm. It is less accurate than Dexcom and requires regular calibrations. Finally, the 670g is not optimized for someone other than the wearer to be operating it. We actively work to have diabetes be less of a burden to Hazel. The 670g would increase the burden on her as we would have to interact directly with the pump that was attached to her multiple times a day.

Why are there no cute pictures of Hazel on this post?

Fine, here’s a picture of Hazel.

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Since You Asked

“I shouldn’t say, ‘can she eat that?’ What should I say?” Excellent question!

If I am handing the food to Hazel there’s no need to say anything.

If you are offering food, asking me (or Matt) discreetly before offering it to her is ideal. There’s a myriad of reasons beyond type 1 that we may not want Hazel to have a cupcake at that moment.

Other ways to be thoughtful:

1. Save nutritional information for us. I’m getting very good at figuring things out, but nutritional info makes everything easier.

2. Give me advance notice if possible. I got an email today from a neighbor saying they were planning on sharing hot cocoa with the neighborhood kids this afternoon (yes, we live on Sesame Street). Knowing this is going to happen helps me prepare. Other times friends have sent me a basic menu of food that would be available at a party or gathering. I don’t need anyone to change their menu or not share hot cocoa, but the more food related info I have going into a situation the better I can care for Hazel.

3. Please don’t exclude Hazel. She is a very observant three year old. We are working to help her have a healthy relationship with type 1 diabetes and food. Having her treated the same as other kids helps.


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Ten Challenges of Toddlers with Type 1

I’ve been thinking lately about the unique challenges of type 1 in a very young child. I like lists, so I made one:

1. When your child weighs 20 pounds (weight of Hazel at dx), there’s really no such thing as a free snack. For bigger people living with T1D, they can eat a few grams of carbs without much consequence. When you are tiny every gram matters.

2. Toddlers fall asleep at inopportune times—like after you dose them for the ice cream they wanted but before they eat it.

3. Potty training brings all sorts of hazards. Once Hazel fell in a toilet in an Airbnb. Her pump was in a belt around her waist and got soaked. Luckily it was fine (and so was Hazel), but none of the books I read prepared me for how to clean toilet water off of a pump. (We used a lot of alcohol swabs.)

4. Growth hormones pop up all the time out of the blue and wreak havoc on blood glucose levels.

5. Toddlers generally can’t count. Hazel has been able to recite numbers in order for a long time, but she doesn’t have the ability to count items yet. So when I found her with a package of candy delightfully eating it, she couldn’t tell me how many she had eaten. She did tell me multiple times how delicious it was.

6. Breastfeeding. Hazel was still nursing when she was diagnosed. It is very difficult to carb count breast milk. We figured it out, but it was a challenge.

7. Everything is made for bigger people. The devices are huge on tiny bodies. The belts to hold the devices are huge.

8. Hazel uses diluted insulin. This means we get the insulin and the diluent from the pharmacy and we mix it ourselves. Small size means small insulin needs.

9. Everything has a name and a personality. Sometimes it’s hard to keep all their genders and personalities straight. There’s Pumpy, Dexy, Dexy Phone, and Riley. Their genders change regularly and Hazel gets annoyed when I don’t get it right (“No! Pumpy’s a girl!”)

10. Alarms can scare small people. When we first got Dexy, the loud jolting alarm startled her more than once. Finally I told her that the alarm was Dexy’s way of telling her she needed a snack (we only had low alarms set at the time). Now Dexy snacks are just part of her life.


Toby

I was making Christmas tree ornaments with my oldest daughter this week, trying to make something that captured the difficulty of this year and balanced it with hope while not taxing my limited artistic abilities. After several false starts (and lots of advice from the 12 year old), I finished my bizarre little Toby ornament.

In February, our youngest daughter was diagnosed with type 1 diabetes and hospitalized for five days. I stayed at the hospital with her. Matt came during the days and spent the nights at home with our older girls. By the second night, Hazel was out of the PICU and no longer had IVs. I thought the worst was behind us. That night the nurse came in to check her blood glucose and found it very high (over 400). The nurse got noticeably flustered, left and came back with two other nurses with vials and needles.  Rarely in a hospital setting is this a good sign. I didn’t understand at the time what they were testing for (we were a little over 24 hours into her diagnosis) or how serious it was. I was very scared.

They had this tiny tube that they needed to fill with capillary blood. They tried to fill it with a finger prick, but failed. After trying for about ten minutes to get enough blood in this tube, they finally decided to lance her toe. By this time Hazel was beyond agitated and I was using all my strength to hold my tiny, 20 pound, 18 month old baby while the nurses literally sliced open her toe. She screamed. I cried. It was awful.

The next morning the little bandage on her tiny toe served as a constant reminder of the trauma. She would point to it and then sign “hurt.” After apologizing as much as I could to a toddler who couldn’t understand, I took a pen and drew a face on the bandage. I named it Toby. Hazel thought this was hilarious. She showed Toby to Matt when he got there for the day. She showed Toby to her sisters when they came to visit. She laughed when I made Toby talk. She stopped signing “hurt” and started saying “Toby.”

I have to admit, I drew Toby on her bandage as much for me as it was for her. I needed to reframe that trauma so I could move on. I think the toe lancing was a pivotal moment for me. The week leading up to her diagnosis I was observing signs, talking to her pediatrician, researching. On Thursday my fears were confirmed and she was diagnosed with type one diabetes. She spend the night in the PICU with monitors, IVs, and constant care. On Friday, we started the education portion of the hospitalization. I was naive enough to think that diabetes was controllable–that if we followed the steps the nurses and doctors taught us everything would be okay. That night as I held my screaming toddler so nurses could gather the blood they needed to test, I realized it was going to be a lot harder than I thought. And it has been so, so much harder than I ever could have imagined.

Toby became a symbol to me of how our family could survive diabetes.  There will be trauma. There will be pain. We will grieve. But the next morning we will find a way to make it manageable. We will laugh. We will love. We will be stronger.


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Diabetes is Like a Newborn

When our daughter was first diagnosed with type one diabetes, we struggled to explain our new life to people in a way that they could understand. One of the analogies we came up with was it was like having a newborn again. For some reason, I’ve been thinking about that analogy again (maybe because we’ve had a good couple of nights so I can think again). The more I think about it the more the analogy works.

  1. They both require constant round the clock monitoring. When our daughter was a newborn, I had either her or her baby monitor beside me at all times. Now I have her blood glucose levels displayed in no less than 6 places around our home (one on my wrist). She wears a sensor that is continuously monitoring her glucose levels. It alarms to wake us in the night. Which brings me to…
  2. Like having a newborn, we don’t sleep. Before she got the continuous glucose monitor, we were checking her blood glucose by pricking her finger every three hours through the night. Now we have alarms to wake us when she needs care, similar to a crying newborn letting you know when it needs attention.
  3. I remember one of the hardest parts of having a newborn was the unpredictable interruptions. When a baby cries, you have to attend to it promptly. When diabetes needs attention, it demands immediate attention. One of my kids always had huge blowout diapers at the worst possible times. Now, you can bet that if we are running late, diabetes will demand attention.
  4. When my oldest daughter was a baby, every time I felt like I figured out her routine she changed. We were always in a state of flux because every stage was short lived. With diabetes as soon as I think I’ve figured out her basal rates, she will hit a growth spurt. The minute I get confident that I’ve figured out how to dose for pizza, something changes and it doesn’t work any more. 
  5. Everyone was always giving me advice when my daughters were babies–”they will sleep better if you rub their back,”  “they need to learn how to sleep without your help,” “you shouldn’t breastfeed or they will get too attached,” “if you don’t breastfeed you are setting them up for a life of failures.” Now, everyone has diabetes advice– “have you tried okra water?” “my uncle had diabetes and exercising more helped him,” “you shouldn’t give her that cupcake,” “you should give her whatever food she wants.” “My cat had diabetes and we had to put it down.” Often the advice is less than helpful.
  6. When my second daughter was born, I remember realizing how different every baby was. My first daughter would sleep best alone. My second daughter was in our bed until she three because that’s where she slept best. I’m learning that every kid with diabetes is unique in their needs. I’ve joined groups with other parents of kids with diabetes and am constantly amazed at what works for different kids–some do well on low carb diets, some thrive on one type of insulin or pump, some prefer shots, some are very insulin sensitive, and so on. There’s no one set rule book for kids with diabetes, just like there’s no one perfect way to care for a newborn.
  7. Leaving the hospital with a newborn was anxiety producing for me, especially with the first one. I was leaving all the people who knew more than me and who could help if there was an emergency. The drive home from the hospital after my daughter’s five day stay at her diagnosis produced the same feeling. We were happy to be out of the hospital, but so terrified. Were we prepared to handle this? What if we missed something in the education? I did not want to go without the support of the nurses and doctors, but we couldn’t live at the hospital.
  8. Diaper bags have a huge market because taking a newborn out requires stuff–diapers, burp cloths, extra outfits (for baby and parent), pacifiers, wipes, more diapers, an extra-extra outfit. I used to laugh that I had a six pound baby and a twenty pound diaper bag. Similarly, now anytime we take our toddler out now we have so much stuff: extra pump sites, insulin, glucagon, glucose tabs, juice boxes, alcohol wipes, syringes, lancets, a blood glucose meter, and more. We don’t leave the house without her diabetes bag.
  9. With a newborn, every illness is taken seriously–they have a fever? Call the doctor. Strange rash? Call the doctor. Throwing up? Call the doctor. Crying more than normal? Call the doctor. Diabetes is the same. No illness, no matter how minor, is “just a cold” or “a normal stomach bug.” My daughter complained of a stomach ache and I was on the phone with the doctor for 30 minutes going over the treatment plan.  She once had a runny nose that messed with her insulin sensitivity so much I spent half the week on the phone with our nurse trying to figure out how to keep her safe.
  10. At first newborns with their constant demands can be overwhelming. Diabetes is the same. Unlike newborns, diabetes doesn’t grow up, but with education and experience it can become less overwhelming.


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I Went to Target Today

I went to Target today with my toddler. The last time we went to Target was 22 days ago — February 16. On that day, my goal had been to buy strips to test Hazel’s urine for ketones. She had recently developed a sudden and extreme increase in thirst and peeing. Her pediatrician refused to consider that this could be a sign of anything serious and even refused to see her. As a step before going to urgent care, I wanted to buy some ketone strips. If she didn’t have ketones in her urine, then I could stop worrying about diabetes.

So we went to Target. We stopped by the One Spot and I got a few little things for her and her sisters’ Easter baskets. I bought aluminum foil and snack bags. All the while Hazel sat subdued in the cart.

My mind fought itself, “Surely she doesn’t have diabetes. It’s so rare for kids her age. That kind of thing doesn’t happen to us. I’m just being crazy and imagining the worst case scenario. Maybe I need a therapist. But what if she does? That would explain all the saturated diapers. No, it can’t really be that.” And on. And on.

Target didn’t have the strips I wanted. As we were leaving, I was trying to decide if I should stop at a pharmacy on the way home or just trust her pediatrician that all was fine. I was carrying her as I walked to the car and I happened to smell her breath. It was acidic and fruity smelling. Right then I knew that I wasn’t crazy. That moment in between the store and the parking lot is frozen in my mind: the sinking feeling of not knowing what to expect next, the dying hope that maybe it was nothing — that lots of pee just meant she had healthy kidneys like her pediatrician said, the fear of my child being seriously ill.

I didn’t really need to go to Target today, but it’s by our bank and I needed to go there. I didn’t want to go to Target. I didn’t want to relive that moment or to think about how sick my child had been the last time I was there. But I went anyway.

Little Hazel laughed and ran through the aisles (until I contained her in a cart), and I smiled. Seeing her so well after she had been so sick was life-giving. I’m sure other shoppers were critical of my parenting as I let her run and play through the store. She was inquisitive and funny, demanding and loving, dancing and giggling.

We made it through the official diagnosis, the hospitalization, the hours of education. We are 22 days in to learning how to treat this beast. We are still deep in the grieving process and there are still hundreds of unknowns, but Hazel is thriving. And that makes this all a bit easier.