The past two weeks have been somewhat of a whirlwind around here – we received a diagnosis of type 1 diabetes for our 12 year old son, and have spent the past week undergoing a crash course education on the endocrine system, experiencing a shift in routine and eating habits, changing our “not until you’re 13” policy on cell phones for kids, and experiencing a lot of disrupted sleep to either high blood sugar or low blood sugar alarms, as well as 2 AM blood sugar checks.

What is Type 1 Diabetes?

In a healthy individual, cells in the pancreas (beta cells) produce insulin, which is needed for glucose (obtained from the food we eat) to be able to enter our cells throughout our body to be used for energy. With Type 1 Diabetes, the body’s pancreas stops producing insulin – often due to an autoimmune response – the body’s own immune system attacks and destroys the beta cells and the pancreas is no longer able to produce insulin. Without insulin, the glucose cannot enter the cells, and instead builds up in the blood, resulting in high blood sugar.

One of the complications associated with diabetes is diabetic ketoacidosis, and is often one of the first signs a person has that they are diabetic. When our cells are unable to get glucose from the blood for energy, our body must find an alternate source of fuel. Our liver starts breaking down fats, which results in the production of ketones, which are acidic and can be harmful if they build up too quickly in the body.

Some of the general signs to look out for with your children are:

• Urinate more frequently, often at night
• increased thirst
• weight loss
• increased appetite
• lethargic
• blurred vision

The CDC has a more extensive list of symptoms that can indicate diabetes and should prompt a person to get checked by a physician, and includes a couple of Type 1- specific symptoms as well, including nausea, vomiting and stomach pain.

As mentioned above, sometimes a person being in diabetic ketoacidosis is the first sign there is a problem (it was for us!). Early signs include excessive thirst and urination. More severe symptoms of ketoacidosis include:

• Fast, deep breathing.
• Dry skin and mouth.
• Flushed face.
• Fruity-smelling breath.
• Headache.
• Muscle stiffness or aches.
• Being very tired.
• Nausea and vomiting.
• Stomach pain.

How to Miss the Signs

At the risk of sounding trite, hind sight is indeed 20/20. I spent the first couple of days going over all the symptoms that seem obvious now, taken together with a diagnosis, but as stand-alone symptoms did not set off any alarms for me or my husband.

As I have been reading online this week, one thing stands out – the disease can develop over weeks or months with few or no symptoms and then become very severe quite quickly, so little things I can see now were probably indicative of diabetes would not have been obvious to me at the time.

The two earliest indicators that something was wrong was lethargy and weight loss.

For a couple or few weeks before we ended up in the ER, my son has been more tired than usual, spending more time vegging on the couch, and often opting to just watch YouTube videos rather than play Fortnite with his sister. I attributed this to staying up too late and maybe starting to get sick with a cold or stomach bug or something. He also struggled to get up on time, often sleeping later than usual. No alarm bells went off right away.

My son has always been lean. Very slender and lanky. He’s the skinniest of my kids. He’s also at the very earliest stage of puberty, so when I noticed he seemed a little skinnier than normal, I attributed this to a recent growth spurt (in height). And like most 12-year-old boys, his wardrobe seems to consist of hoodies and either sweat pants or athletic shorts. And while I would have noticed a drastic weight change in a younger child I was still putting into the bath at night, at this age, kids are showering and dressing on their own. So, again, no alarm bells going off.

However, about two weeks ago, two things happened. I noticed that his face, which had long since lost any baby fat and matched his slender build, appeared much thinner than it normally does, almost gaunt. And I happened to catch him between outfit changes and saw him in boxer briefs and a t-shirt, and realized his arms and legs had become rail thin. I immediately put him on the scale, pulled up his last doctor visit summary from the beginning of summer and realized he had lost ten pounds in a short period of time. Paired with his lethargy, I am thinking he probably slowly started losing weight during the summer but because he’s always been very thin, it didn’t stand out. It wasn’t until the last several weeks when he lost a lot of weight rapidly.

So the lethargy and weight loss had me calling the doctor making an appointment. At this point, I was pretty concerned he was sick, but to be honest diabetes was still not on my radar, for a couple of reasons.

First off, while I am familiar with adult onset, Type 2 diabetes (often associated with lifestyle, weight gain, inactivity etc), I wasn’t that familiar with Type 1. I had always heard it called juvenile diabetes and the people I’ve heard of who have Type 1 were diagnosed at much younger ages. So I had an misconception in my mind that Type 1 diabetes was usually diagnosed in younger kids, so it didn’t occur to me that this could be a possibility for my son. I have since learned that there are two noticeable peaks of occurrence with kids – seen in ages 4-7 but also in ages 10-14. Older folks are diagnosed with Type 1 as well.

Second, there are a couple of signs that I missed – excessive thirst and excessive urination.

One thing we stress in our household is the importance of drinking water. I joke that we are a well-hydrated family. Water is the main drink we consume, and it is not unusual for any of us to fill and refill water cups throughout the day. We bring water bottles to the library and park and on all of our errands. And my son loves a lot of ice in his water, so he refills often since his cup is usually mostly ice. So him refilling his water a lot didn’t register, even to him. And when I do bring in sweet drinks, like juice or soda, the kids frenzy since it is not a usual occurrence, so again, his drinking more than usual wouldn’t have set off alarms.

Because everyone drinks a lot of water throughout the day, it isn’t unusual for one or more of my kids to get up in the middle of the night to use the bathroom. And while their bathroom light usually wakes me up, I can’t tell which kid has gotten up, and so it would not have been obvious to me that this could be symptomatic. And because it isn’t unusual for him to pee at night, it wasn’t something he would have mentioned to me.

After receiving our diagnosis, I’ve gone through any physical complaints my son has had over the past year, wondering if they were early signs of diabetes. Complaints of his legs hurting that could be attributed to growing pains, headaches that could be blamed on too much screen time, the occasional stomach ache that seemed to resolve on it’s own with a glass of water. That’s the hard part – symptoms occurring over a short period of time stand out and are considered together, but spread out over months or years they don’t really register. Kids get headaches, kids get stomach aches, kids complain of their legs hurting as they are growing. None of these would cause alarm to most parents.

Don’t Discount Others’ Observations

I had scheduled an appointment with the nurse practitioner in our doctor’s office, hoping to get blood work scheduled, to see what might be going on. Up to the day of the appointment, I was still thinking my son could be sick with something, but diabetes was not on my radar. We happened to meet our friend for lunch before his appointment, and while my son refilling his cup at lunch didn’t seem out of place to me, like I mentioned above, it did for my friend, who hadn’t seen him in a few months. Realizing that maybe he was drinking more usual, I did ask if he had been peeing more than usual, which he acknowledged. So in the course of an hour or so, I had two more symptoms that I was aware of – and now diabetes was on my radar.

**Sometimes things don’t seem relevant to our kids until we mention them. He had been peeing more than normal but it had gone unnoticed by us and he didn’t really notice until we asked. And it’s not like with a UTI where there is an urgency but not as much pee, which would have stood out and has happened with a couple of our kids. He just happened to be going a little more frequently.

Escalate If Needed

Our appointment was on a Friday afternoon, and we discussed his symptoms and that diabetes was certainly a concern. I asked for a full blood workup, metabolic panel, lipid screen (he was due for his first anyway) and a fasting glucose and A1C was ordered. Because it was a Friday afternoon, however, Monday morning was the earliest for this to be done through the doctor’s office. My son did not seem to be in acute distress at this time so this seemed reasonable.

** Looking back, his blood glucose should have been measured in office, a simple finger prick would have given us immediate answers, but I knew that fasting glucose was needed for a more definitive answer.

His lethargy was about the same the remainder of the day, but was a lot worse the next day. My husband and I were concerned that waiting for fasting blood work on Monday was too long of a wait with him feeling even more tired, and we were deciding if we needed to go to the emergency room.

I happened to have a blood glucose monitor tucked away in a drawer from a year ago when, due to weight gain, I had become prediabetic. I’ve since lost most of the weight gained, having gone off a particular medication that was the most likely cause, and I haven’t had any blood sugar issues in quite a while. But I remembered I still had the monitor, and dug it out.

We went to the store and bought more test strips. I had also done some reading online that morning about diabetes, and saw that if he had high blood sugar, he might also have ketones in his urine. So we also got a set of ketone urinalysis test strips. We got home and checked his blood sugar – it was super high, like 546 mg/dL. We actually ended up checking our own blood as well to make sure the meter was reading correctly. We then checked his urine and it tested positive for large ketones (the darkest color response on the urinalysis strips). I immediately took him to the ER.

The moment we showed up to the ER, things started happening quite rapidly. The first nurse who walked in said she could smell the ketones coming off of him. ** My son drinks a lot of mint tea, so we hadn’t picked up on any fruity smells coming off of him. This is a sign of ketoacidosis, so fruity smelling breath should be something that immediately sets off alarm bells.

The ER doctor noted his weight loss and said he was in diabetic ketoacidosis. Over the next couple of hours, he was stabilized in the ER – receiving IV fluids and insulin to help bring his blood sugar down – while transfer and transport to the children’s hospital was arranged. Lots of blood work was done at the ER as well as at Texas Children’s – I may put together another post where I got through the many blood tests that have been done and what they are used for.

Under Control

After being transported to Texas Children’s (he LOVED the ambulance ride!) – we spent the the next two days at Texas Children’s, where his blood sugar was brought under control. He was taken off of IV insulin his first day, and the remainder of our stay he received insulin through injection. I administered some of his doses, and he also learned to self-administer. We became proficient with both syringe and pen for administering his shots. We also continued to monitor his blood sugar regularly using a blood glucose monitor.

Before we were discharged, however, he did receive a continuous glucose monitor -which uses a subcutaneous sensor that stays inserted in his skin and transmits his blood glucose via an attached transmitter to a smart phone app using a bluetooth connection. A good amount of our time at the hospital was spent in diabetes education, and the time spent learning the ins and outs of the disease, as well as how to manage it, was invaluable.

The first day home his blood sugar was monitored using my phone, but we immediately ordered a new cell phone and added a line to our service plan for him. Up until this point, our family cell phone rule was “no phone line until 13” though my kids often play apps on wifi-only phones we still have around the house. With the new diagnosis, however, we knew we wanted him to have his own phone. While he could of course monitor his blood glucose using an unconnected cell phone, we would not be able to monitor his readings on our phones.

Our son uses a Dexcom g6 continuous glucose monitor, and so on his phone, he has the Dexcom g6 app that receives his blood glucose readings from his sensor. On our phones, however, we have the Dexcom Follow app, which allows us (mom, dad, and older sister) to follow his readings in real time (or very close to real time). We also have alerts set for high blood sugar, as well as low blood sugar, and critical low blood sugar. In addition, there is a third app on his phone, Dexcom Clarity, which allows his care team to monitor his readings so they can adjust his treatment plan as needed.

We also wanted him to have his own phone line following his diagnosis so that he could contact us whenever he is out and not with one of us. If he starts having a low blood glucose event and needs some help – even though he won’t be out without supplies – I want to ensure he is able to reach out immediately. I also have location services turned on for emergencies as well.

Taking Charge of Care

While parents can be expected to be very hands on with care given this diagnosis, especially at a much younger age, for our son at age 12 I am trying to let him take charge of his daily monitoring and insulin administration as much as possible.

He knows to track his glucose levels, and will let one of us know if it’s too low (before the alarm is triggered) so he can correct with juice and a snack. And while I am doing the calculations for how much insulin is needed before each meal, and calculating his correction dose, I make sure he sees how I am doing the math, so he can calculate on his own if needed. He understands the insulin:carb ratio we use, as well as the Correction Factor we use.

And while he clears his insulin pens and dials his doses, I double check before he injects (even at the hospital the nurses followed a two-person rule for checking correct dosing). Occasionally I will do the injection if it’s harder to reach (like his arm, for example) but he usually manages just fine.

Settling In

Now that we are home, we are getting used to a new normal.

We’ve had a couple sleepless nights due to high blood sugar alarms going off, and a couple of 2 AM checks where his readings were really low and I had to bring juice and snacks in bed in the middle of the night.

The first week, my son was constantly wanting to eat, but we are trying to keep carbs to his meal times when he takes insulin and keep non-carby snacks for the between times. But because his body has been recovering from (essentially) starvation, he was ravenous when we first got home. It’s leveled off after the first week, and he’s already regained all the weight he had lost.

But we’ve had to adjust to having a more regimented feeding schedule – we prep his meals and he doses before he eats, so he can’t just grab and eat like he used to. Meals take a little more planning, and he has to be mindful of what snacks he can have between meals. Sometimes that is frustrating – at his age, kids want to grab and go with little thought. And I don’t like feeling like the food police.

But we keep encouraging him with the knowledge that he isn’t being deprived of anything, he just needs to schedule a little more. As long as he plans something as part of his meal and we calculate the insulin needed, he can enjoy! So, thankfully while his diet is a little managed, it’s not truly restricted.

We are still very early into his new diagnosis, and still have plenty to learn. But I will continue to post on this subject, as we continue our education and adapt to the many changes this diagnosis has brought to our family.

Online Resources for Type 1 Diabetes

Juvenile Diabetes Research Foundation – resource for advocasy, research funding and education
Mayo Clinic – great overview of the T1D
Kids Health – overview of T1D and and helpful links
CDC – lots of good information on T1D
American Diabetes Association – information and resources, including an extensive FAQ for students with diabetes and needing support in school settings
Dexcom– continuous glucose monitors
Omnipod – tubeless insulin pumps
CalorieKing – app for tracking nutritional information for restaurants/fast food
Cronometer – my new favorite app. search food and restaurants. save recipes and enter any food manually that might not be in the database
My Fitness Pal – similar in function to Cronometer, searchable database of foot items
Texas Children’s Hospital – Diabetes Educational Resources covering a multitude of topics, ranging from the disease itself as well as diet, insulin administration, glucose monitoring, etc.
TrialNet – screening resources for those with family members diagnosed with T1D, to see if they are at risk as well