Saturday, November 18, 2017

Type 1 Diabetes: Where We are Today 1.5 Years Later

Time to wrap up my 3-part series on Type 1 Diabetes for Diabetes Awareness Month. Missed the posts?

Read what type 1 diabetes is here.

Read about my son's diagnosis and the weeks leading up to it here.

Settling into the routine of checking blood sugar, calculating carbs, and scheduling routine endocrinology appointments happened much quicker than you would imagine. It was no time at all and my son was doing nearly all his checking and calculating with us watching over him. Of all ages to be diagnosed, eleven feels a bit like a golden age - old enough to help in nearly every aspect of his care and still have a bit of time before hormones wreck the picture.

We dealt with a lot of low blood sugars those first six months. My son was so sensitive to insulin initially, and that is typical. The body is funny. Now receiving adequate insulin his body had a breather and his pancreas was able to squeeze out insulin on its own (not enough but some). This is called the "honeymoon" period.

My son took his time coming out of honeymoon, and it was not a rapid, overnight process. He caught a cold in the fall, which increased his insulin needs. Then a growth spurt - again, more insulin. This pattern continued. We would barely adjust dosing needs, something would happen, his blood sugar would raise, and we would respond with more insulin. A year out from the start of that process, my son's insulin needs have more than quadrupled.

Today, our adjustments are fewer than over this past year, but hormones are driving the rollercoaster now. Every day is a surprise. My son checks his blood sugar often, as do my husband and I during the night.

While there are times we are frustrated or just have a good laugh about diabetes, overall emotions are good and my son takes it all with a shrug and a smile. To show you how he is, he once told me he would rather have diabetes than his siblings.

My boy now...

A Day in the Life...

The night before... Bed time was a good number at 118. He came in a few hours later and checked in at 119 around 11:00 pm.

My husband did a middle of the night check because his morning number had been below 100. He was 73. It was around 4:00 AM so we let him go, knowing that the body naturally raises glucose in the early morning hours.

Sure enough, breakfast at 8:30 found him at 132.

Lunch was early. We had been out for confession and were early to the girls' piano lesson so we ate our packed lunch. He was 302. Hmm... he seems to be going high before lunch again. We'll have to keep an eye on that.

Check again a few hours later to make sure he's down. 211. Darn. He doesn't feel well again, he tells you. He seems to be coming down with something since Monday. He does feel a little feverish. Ketones negative thankfully (they were small yesterday).

An hour and half later... He doesn't look so good. He's 54. Treat and retest - 89. Dinner in an hour.

An early dinner at 4:00pm because of dance and CCD, which I decide he will miss because he still seems off, with a possible fever.

8:00 pm - after CCD, he still doesn't feel the best. He's 410. Ketones - trace - are present.

After reading for awhile - he still won't sleep even though he doesn't feel well - he's 269. Correct with insulin and back to bed. Of course, not feeling well means a middle of the night check again. Seems like we are doing more of those lately than we have in awhile. It's a good thing my husband is a night owl.

BONUS...

An interview with my son. I tried to do a video interview, but he would only agree to answering questions.

~~~~~~~~~~~~~~~~~~~~

Do you think about having diabetes often?

No.

What do you like least about having diabetes?

Uh, I don't know. Sometimes the insulin burns. I don't like lows. I feel too hungry. I could eat anything when I'm low.

Even spinach?

NO.

Is there anything good about having diabetes?

My kit gives me more storage. [His kit holds all his diabetes supplies, and he takes it wherever he goes. He always has to be prepared.]

Do you mind when people watch you check your blood sugar, give yourself insulin, or ask questions about diabetes?

No.

Do you like to educate people about diabetes?

Yeah, if they want to know about it.

Is there anything you feel you can't do having diabetes?

No.

~~~~~~~~~~~~~~~~~~~~

Twelve year old boys are so expressive.

I hope you enjoyed this 3-part series, and maybe even learned a thing or two.

Saturday, November 11, 2017

Advent Calendar 2017

A reader asked if I was making my Advent calendar again this year. Truthfully, I hadn't even thought about it as life seems more day-to-day than thinking months ahead, but Advent is fast approaching so I took bits of time this week to get it done. It was different from the past few years because Advent is so short, and I had space to add in the Christmas season!

Share, use, and let me know if you have any issues. Hopefully this year I have all the dates correct. Oops.

Advent 2017 Calendar (pdf)


Friday, November 10, 2017

Type 1 Diabetes: My Son's Diagnosis

Following last week's type 1 diabetes introduction, I will continue by telling you about the days leading up to my son's diagnosis and our stay at the hospital as well.

As I said previously, there is usually a trigger that sets off the autoimmune response that eventually leads to the destruction of the beta cells in the pancreas and to that emergency situation called DKA (diabetic ketoacidosis). For my son, I believe that trigger was the flu from the spring of 2011. My son was six years old at the time. He was not diagnosed until he was eleven.

My son at age 6 (July 2011).

You can read what I wrote in 2011 about that time, but in a nutshell, my son had difficulty getting over the flu and showed classic diabetic signs. I did not know that at the time however. Thankfully, his symptoms seemed to stop and he recovered fully. I did have him into the doctor for his annual checkup, mentioned what I had seen, and the doctor felt that something might be brewing based on my son's history. He said it could be type 1 diabetes and told me the signs as it could get serious fast. Skip ahead a month and my son had a virus. Same thing happened, but he recovered more quickly. Now it's July and it happened again. After his annual GI follow-up that month for celiac, that doctor also mentioned type 1, and said it could take up to a few years to fully "kill" off the pancreas. He said that I should get my son tested for diabetes when he came down sick again. Bad mom here... Life was busy (new baby), my son was healthy for awhile, and those symptoms seemed to have disappeared completely. Even when he next became sick, I do not remember excessive symptoms as he had been experiencing.

Jump ahead to 2016. We had had a decent winter as far as health. Then Lent came, and my family was hit hard with illness. Was it any surprise that we all were paler, peckish, and cranky? In fact, at the time, I was more worried about my youngest than anyone. She had a rough spell with a nasty viral tonsillitis and was nearly admitted to the hospital.

A few weeks prior to his diagnosis, we celebrated my son's 11th birthday.

On his birthday, March 8th.

As I said, all of us were a little crankier, but my son seemed over the top irritable. In school, he struggled even more than usual with his work - unfocused, not remembering things. I remember in the months leading up to his diagnosis feeling particularly annoyed about both of these "attitudes."

Weekend of March 19/20 (Palm Sunday) - In the haze of illness, I notice that my son is waking up even earlier than usual, and already has a cup of water sitting next to the water dispenser. The kids usually don't grab water until mid-morning at the earliest. An alarm bell goes off (only because of previous "niggle"). I observed him over the weekend - did it seem like he was waking up to go to the bathroom more? Was I just crazy? And as I cleaned the bathroom that weekend: Why can't the boys pee in the toilet and why does it seem so thick?

I remember asking him if he was drinking and peeing more. He hummed and hawed a bit before saying, "I don't think so." 

Then he peed the bed Sunday night - something he hadn't done for at least a year.

Monday and Tuesday pass. Honestly, this was a haze. We were supposed to leave for vacation early on Thursday morning. My illness had progressed, and I was miserably sick with bronchitis. Thankfully, the other kids had perked up by then.

Wednesday, March 23, 2017

I woke up, feeling awful, but at least mostly prepared to head on the road the next day for vacation. My husband was finishing up his work. The kids were excited. I put a call into my doctor for an antibiotic, but he wasn't in the office. The nurse was able to get the other doctor to write me a prescription. Unfortunately, he wrote the wrong one out (I'm allergic to cipro), and that was a big hassle to fix.

Meanwhile, mid-morning, my son comes up to me and says, "You know how you asked if I was drinking and peeing more? Well, I think I am. I'm so thirsty. I keep drinking, and I have to go right away. As soon as I stop I have to go again." 

Alarm bells loud and clear. We're leaving on vacation tomorrow.

I called the pediatrician. I figured at the very least I could bring him in for a urine sample or finger poke. Nope. I was told I had to see a doctor, and that there were no appointment slots for that day. She could schedule us for after our vacation. I said no, I would figure something out.

I had a blood glucose meter at the house then. I have a family history of type 2 diabetes and a bunch of risk factors myself so I like to check my blood sugar randomly. I remembered what my son's first pediatrician had told me: "If he has it, his blood sugar will be high. There's no question about it. It won't just be a little above normal, like 150 or 180, but it will be a lot above normal."

My son did not like the idea of getting poked in the finger, but I told him if we did that and it was fine, then we would not have to worry about seeing the doctor and could finish getting ready for vacation. He was brave - a few tears but that needle does hurt - and then I saw it: 299. My stomach dropped. It was a surreal moment.

Thankfully, I keep it together fairly well in a crisis (I crash after the fact). I called the pediatrician's office back, told them what I had done, his number result, and the receptionist still said they could only see me after vacation. I was not happy with this woman, and I know my tone of voice conveyed that. She eventually talked to a nurse who then talked directly to me. She said I could take him to an Urgent Care or an ER, but if it was diabetes I would have to eventually go to an ER anyway.

After hanging up the phone, I updated my husband on the situation, packed my big purse with a phone charger, medicine for me, snacks, etc. I knew we would be there for a bit, but I thought we would come home. Sure, my son's number was high but not crazy high like the stories I had read. He seemed ok other than the peeing and drinking.

I was wrong.

It was a ten minute drive to our small-town hospital, and we were quickly taken back to a room. Things started moving fast: the nurse hooked him up to fluids and an I.V. and his blood sugar was tested (300 something). I had to walk him to the bathroom to pee in the cup. I don't remember being told this at the time, but later I would find out his ketones were maxed out at 5, which put him into DKA

Ketones are measured with a urine test. For my son, it was a sign that his body could not use up the glucose in his cells and was instead using fat as energy. This is what caused such a dramatic weight loss over a mere few days.

DKA stands for diabetic ketoacidosis. It is the condition that occurs when too many ketones are produced in the body. It is a life-threatening condition. If left untreated, the person would enter into a diabetic coma, and the body would shut down and die. (Note that a normal person can have trace or small amounts of ketones in their urine from certain diets or from dehydration.)

So here we were. My son lying in a bed, exhausted and hungry. It was dinner time and he had not eaten since lunch. Thankfully a game was a good distraction. See how much thinner he had become since his birthday celebration a few weeks before?


The pediatrician on call was nice but a little on the nervous excited side. I guess our small town office does not diagnosis type 1 diabetes often. She basically said what I already knew: "He most likely has type 1 diabetes. We're going to move him to a children's hospital so they can take care of him and show you guys what you need to know. He's not sick enough to fly out of here so an ambulance will take him."

The nearest children's hospital was an hour and a half away. Could we just take him ourselves. He seems stable enough? (Silly us, I know.) You could... But then you would have to go through the ER, pay another co-pay, sit there and wait, and maybe not even get a bed for him. Right now they have a bed and are waiting on him.

Ok... So can we at least ride with him in the ambulance? One of you can ride up front with the driver, but the back is too small for either of you.

Meanwhile, papers are shoved at me to sign, my husband is trying to find a quiet spot to call my in-laws to update them and see about the kids spending the night so he could drive up behind us. 

So much for vacation the next day...

As we were exiting out the hospital, I still had a person wanting payment, but the ambulance people were hurrying so I shoved that person off to my husband who took care of it. (I don't understand why they didn't bill us? Last year my daughter was taken in quickly to the ER and nothing like that happened. I was sent a bill.)

Anyhow, the drive felt so long. By now it's after ten o'clock. The night was dark, the streets were fairly empty, even as we neared the city. I remember driving past a young guy swerving a bit on the highway. He was on his phone. Don't do that people. The lights were on but dimmed in the back. Later my son would tell me he slept most of the way because he had such a headache and was so tired.

At the hospital we were taken into the chaotic children's ER triage area. The ambulance people stayed with us through admittance and transporting him to his room. A wonderful, wonderful nurse was working that night. She was our first educator in the world of diabetes. Plus, she heard that my son has celiac disease, had missed dinner, and of course knew he would be starving from his body not having proper fuel. She had a fridge stocked with tons of "free" foods - cheese, deli meats, pickles, hard boiled eggs, etc. Free being carb free and in this case, gluten-free. What a God send she was. Through the night she showed us everything she did and why.

My son with his bedside set-up. He loved that he could eat as much as he wanted. He kept a book on hand, but that first day kept us hopping.


The first day brought doctors (endocrinologists care for diabetic patients), nurses, educators, dietitian, social worker, financial people, and I don't know who else. It was busy. I don't remember much. My husband was awesome and really took over that day. I was tired from the excitement of it all and still very much wore out from the bronchitis.

We practiced checking blood sugar by testing ourselves. We injected saline solution into each other to practice injecting "insulin." In the room, the nurses were doing all of that up to this point, but they encouraged us to try. We were motivated to get out of there and we took over as soon as we could. He had to be checked every 3-4 hours.

For eating, a sliding scale was given to us. So if my son wanted to eat something with 1-20 carbs, this is how much insulin he would get, 21-40 carbs this much, etc. We had more trouble with the kitchen than anything in that hospital. Multiple times my husband was on the phone arguing with someone about what is gluten-free or not. The person told us we could only pick from the set list of items which were all processed foods, but did not account for naturally gluten free foods like hard boiled eggs, cheese, etc. 

Nighttime was a little uncomfortable. We had a hard, plasticky pull-out. One of the nights the emotions caught up to my husband so I woke to find the two of them snuggling.



Friday was much calmer and quieter. We started the day off with educational rounds. The endo leading them was an older woman, nice but firm. Questions were asked among the group. She told them the patient's mom diagnosed her son because a pediatrician told her the signs years ago. I asked what the chances of my other children getting type 1 diabetes because when my son was diagnosed with celiac I was told it was unlikely, that it's a 1:20 chance, but now three of my four children had it. I heard gasps and saw raised eyebrows and open mouths. I think I even surprised the endo. Of course I did not get a direct answer, and really did not expect to.

For the rest of the day, the doctor and nurses were trying to get us out of the hospital so we could leave for vacation. Usually kids stay in for three or four days (more if they are really sick at diagnosis). At first, one of the doctors was against it, but the other was for it. I think, in the end, our willingness to learn and showing how quickly we took over and understood what was going on helped sway the other doctor to our side, albeit reluctantly. 

We spent the day exploring, resting, and eating. The floor had a room with games and other activities. You could play there or take something back to your room. At one point there was a dog in the activity room to cheer up the kids. 


One doctor let us go off the floor to check out some "visiting" areas of the hospital, but he had us bring sugar tabs with us for my son to take if he felt weird at all. I could see the other doctor biting her tongue when he allowed us to go. It was a nice break from the room, especially as a baby (an older baby by the sounds of crying) had been admitted and was inconsolable. 


With all their hard work - and ours - we were discharged at 4 pm on Friday. Our pharmacy stayed open for us so we could get the rest of our supplies. The rest they did not have we had picked up at the hospital pharmacy previously. We easily dropped $500 on pharmacy supplies alone.

By then, the other kids were at the house. My brother-in-law and his family were watching the kids. We had very little to pack so the kids quickly ate, and we took off that night for vacation.

In hindsight, knowing what I do now, I understand why the first doctor was reserved about us going, but I am also thankful for the other doctor okaying it and for being relaxed about it. We had a blast on vacation. It was a nice moment after weeks of illness and my son's diagnosis.

We still had much to learn (we still do). There would be many ups and downs. In no time, though, diabetes became part of our lives, and we only look forward now. As my son says, "I only think about it when I have to eat. Or sometimes when I do karate because it can mess me up there."

My son two months post-diagnosis, looking so much healthier.

(Original diagnosis post here.)


Friday, November 3, 2017

Type 1 Diabetes: Introduction

November is Diabetes Awareness month. I would like to take the next three weeks to write about diabetes, my son's diagnosis, and where we are a year and a half later.

There are two main types of diabetes: type 1 and type 2. There are other types as well, but for my purposes, these two make up the majority of diabetics. Even so, of those diagnosed with diabetes, 95% are type 2 and 5% type 1, which means most people think they know about diabetes when in truth they only know about type 2 diabetes.

What's the difference then?

First, let's talk about the normal body. In a nutshell, a normal person eats food, the carbs are converted to energy, and allowed to be used for energy by insulin made in the pancreas, and we go about our day not thinking of this very important, life-or-death organ in our bodies. Small amounts of insulin are made throughout the day, and the liver counteracts with glucose to maintain a stable "sugar" environment that our bodies use for energy. FYI, I'm not a doctor - just a mom trying to explain in laymen's terms.

I like the door metaphor. In a normal person there are cells and glucose is in them (those carbs we eat). Insulin is the key that comes along, unlocks the door, and allows the energy (glucose) out. In a diabetic, something goes wrong. In type 2 diabetes, the keys are there, insulin is produced by the pancreas, but something is wrong with the lock and the glucose remains trapped, raising blood sugar levels. In type 1 diabetics, there simply is no key - no insulin - and no way to unlock the perfectly working lock and door.

For those who like visuals:



Type 2 diabetes is often the result of genetics and lifestyle. It usually takes a long time to develop, and diet and exercise can significantly aid a body in working properly so the key can unlock the door. This is typically done through lower carb diets (less carbs = less doors to unlock), exercise, and sometimes medication. While this is most often diagnosed in adults, children are increasingly diagnosed as a result of our modern sedentary lifestyle. While many people associate type 2 diabetes with overweight people, I think that is a mistake. In my own family, there are three type 2 diabetics that were underweight, at weight, and slightly overweight at diagnosis.

Type 1 diabetes is an autoimmune disease. In any autoimmune disease, something triggers the body to attack itself. That something is partially genetics and environment plus the trigger like a virus. Any part of the body can be attacked. Your body thinks a piece of itself is the enemy and "fights" it by creating antibodies to destroy that piece of you. In Hashimoto's or Grave's, the thyroid is attacked. In celiac disease, the cilia of the small intestine is attacked. In psoriasis, the skin is attacked. You get the picture. In type 1 diabetes, the islet cells of the pancreas is attacked, and eventually killed off. These cells make insulin which is crucial to life. Without the cells, without insulin, type 1 diabetes is fatal. Today, thankfully, with modern medicine, it is not fatal (usually), though it can be serious at different points of the disease.

Though type 1 diabetes appears to come on suddenly (over a few days to a week), there usually are symptoms in hindsight, and occasionally, like my son's case and me being a paranoid mom, years of off/on symptoms. That's because, unless the pancreas takes a direct hit (like an accident), it takes time for the islet cells to die off and for the body to basically be in a dying state.


The symptoms for diabetes is similar for both types, but in type 1 diabetes the symptoms often come on suddenly, and for many, after an illness. They are also excessive, as in, you will start to notice something is going on and say to yourself, "Hmm... I think I need to keep an eye on this." It doesn't come and go. It intensifies as the days pass. Days. I went from the "Hmm..." to I think we need to call the doctor in less than four days. I say this to assuage any worries you may have because your child seems to be drinking more lately.

And the ant and urine thing? That's a first for me. I will say that my son's urine looked like no urine I have ever seen. It was very yellow (dehydration) and sticky like honey which of course was the sugar he was spilling out. That makes sense about it attracting ants, doesn't it?

For more information on diabetes go to the American Diabetes Association.

Tuesday, October 31, 2017

Day 31: The End

Day 31 of the 31 day challenge.

I missed yesterday. I'm not feeling very well. I can't miss today though. It's the end of the 31 days! It will be short and I sweet. I am not thinking straight.

Instead of following the prompt (how I balance work and rest - ha!), I wanted to say another thank you to Ana Maria for remembering me when she asked a group of women to blog for 31 days. At first, I thought maybe I shouldn't commit, but I am glad I did. Writing nearly every day has helped me remember how much I actually like to write. Following the prompts was also a challenge in pushing myself to write about something I did not always like.

I am glad you came along for the ride.


Don't forget to check out these other blogs:

~~Ana Maria at Bottled Ponderings~~

~~Christine at Epiphanies of Beauty~~

~~Barb at Praying for Grace~~