I recently wrote this as a post on Facebook because I know a lot of parents who encounter my daughter are confused about what she can eat, and I don't blame them! When we received our diagnosis, the amount we had to suddenly learn was mind-boggling. Not everyone needs to know as much as we parents do, but those around our children - especially at meal time! - should know the basics. Hopefully by sharing information like this, we can help people understand how different this disease is and how it is often misunderstood. (What? Diabetics CAN eat sugar? What?)
Anyone is welcome to share this post. You can let people know that if they don't have time to read it all, they can skip to #9 for the bottom line. Conversely, those would like to go a little deeper will benefit from reading #10.
Here's what I came up with:
1. T1s can eat anything. Nothing is off-limits, technically. When we were in training, the dietician said that our daughter should probably never have syrup or regular soda, though.
2. Anytime a T1 eats, unless their blood sugar is low and they need to bring it up, they need to get insulin into their bloodstream immediately, or faster. (We actually give it up to 20 minutes ahead of time, because even "fast-acting" insulin isn't as fast as our digestive system.) See below for the details of "why," if you are interested.
3. The amount of insulin we give is based mostly on the amount of carb grams in the food, not sugar. If you are ever in a position to give food to my daughter, the answer will usually be, "Yes, she can have it. We just need to know how many carbs are in it."
4. The ONLY time we are concerned with sugar, for a T1 reason, and not general health, is to evaluate the type of sugar in a food that we are using to bring up a low blood sugar. Some types of sugar work faster than others, which is why we will give her juice or Skittles when she is low instead of chocolate. (Fat slows everything down.) For almost everything she eats, we think of where it is on the glycemic index.
5. Some T1s use multiple daily injections, or shots, when they need to eat (so, a shot at every meal). Often times, this means they are given a set number of carbs to eat at certain meals, based on how their bodies use their food at certain times of the day. Some, however, who take shots, can just use a formula for how much they are planning to eat to decide how much insulin they will need. That is called their sliding scale.
6. My daughter has an insulin pump. You will see it as a small white box attached to her arm or leg. (Other pumps look different.) Inside it is a needle and a resevior of insulin. She must wear this at all times, though we change it and refill it every other day. It constantly drips insulin into her bloodstream, since our bodies are constantly producing glucagon.
7. To give her insulin through the pump, all we need to do is program her blood sugar and number of carbs into a small black device. We have the device pre-programmed to calculate the insulin based on many factors. So, other than that, we just hope it's a good amount!
8. There are an estimated 60 factors that contribute to changes in blood sugar, so we never know when her blood sugar will drop or rise. This is why she also wears a continuous glucose monitor, and we watch it on our phones throughout the day and night. When our phone alarms us, she is either high or low and we can fix that either by giving her sugar or insulin, or adjusting the drip of insulin she is already getting. If she is low, she will likely eat something sugary without getting insulin for it. Insulin brings blood sugar down; sugar (obviously) brings it up.
9. Bottom Line for those who need to know: If a T1 is going to eat something, it is most likely fine, as long as we know how many carbs it has. And we don't want anything sugar-free, thank you. Because, eww.
10. The science behind metabolising food, for those who want to know more: When your body consumes food, it breaks it down by fats, proteins, and carbs, etc. Carbs are used for energy. Your pancreas produces insulin, a hormone that carries the carbs (which have now been broken down into sugar - hence why we check the sugar in the blood) to all the cells in the body so that they can function. Someone with Type 1 Diabetes has a pancreas that does does not produce insulin, rendering it useless. When there is no insulin, the carbs/sugar stay put in the bloodstream, unable to get into the cells to be used as energy. For this reason, someone with a high blood sugar feels like they have no energy. They literally need the insulin to get the sugar from the blood into the cells. A body that goes too long without insulin (and this could be only a matter of hours) will go into a state called diabetic ketoacidosis (DKA), where the sugar in the blood is so concentrated, it begins to rot, turning to acid, with a by-product of protein. The acid will start eating away at other organs in the body, namely the brain. A T1 in DKA is an emergency situation and must be treated in the hospital to bring the BG down safely and quickly to minimize the chance of brain damage or death. Because protein is produced when a T1 is in DKA, the condition can be detected by a urine test.
Unfortunately, there is no pill for this disease. Insulin has to reach the blood stream immediately, by injection. But scientists are working on different cure ideas, so we have much hope. Please don't hesitate to ask me if you have ANY questions!
The other day, I was standing near a group of parents at school who were discussing the class's upcoming field trip. Chaperoning field trips and sometimes overseeing class parties often come down to a lottery drawing to see which parents are chosen to come. It's usually a pretty big deal, and the older the kids get, the more exciting the trips are, the more parents want to come.
I overheard a parent mention that "some" parents always get to chaperone the field trips in our children's class. Her words were polite, but I could tell from her voice that she was bothered. (She also mentioned that once again, she was not chosen to chaperone.)
I know that I was one of the parents to whom she was referring. (Me, and the other T1D moms in our school.) We have it written into our 504 plan that we need to chaperone all field trips. The school nurse usually takes care of our kids' diabetic needs during school hours, but we can't take her away from the other diabetics, asthmatics, chronically-ill, and other kids with various illnesses.
I agree. It's not fair for one parent to always be granted one of the few spots allowed to parents on these outings. And that same parent also gets to be at all the class parties. (Trust me - these are actually coveted positions!)
I wanted to tell her this: I would love to give you my spot as a chaperone on the next field trip. It would work for everyone anyway. My other kids are mad at me that I go to all her trips and not theirs. And honestly, it's been difficult to make sure I can work every trip and party into my schedule. I could use a break from it. So, please! Take my spot!
But before you go, there are a few things you need to be ready for a few things. Remember, I said the school nurse will not be there. The teacher needs to oversee all the other children, so you will need to be the one to take care of my daughter's diabetic needs, okay? Okay.
We make it look easy, but there are a lot of details you might miss, so please pay attention. She will give you her bag of supplies to make sure it is in safe keeping. Guard this bag with your life, because in it are some prescriptions that my insurance will NOT let me renew until a certain date. One of them is her insulin. If we lose her insulin, she is in critical danger.
Also in this bag are lots of food items. On this field trip, there will probably be someone at the door checking bags. Since most places do not allow you to bring your own food items in with you, you will probably be pulled aside and told you need to get rid of the food. Fight this - you must have the food. I usually bring my daughter over and show them the pump on her arm and CGM on her other arm to explain that she has diabetes. The security guard will balk at you, because a lot of the food in the bag is sugary food and candy. Most people don't believe you when you tell them that T1 diabetics rely on this quick sugar to save their lives. Hopefully you will find someone at the institution who will believe you.
Yes, about that candy. Obviously, she can't just have that anytime she wants, but she's pretty good about knowing that. She knows that eating this candy for her is life or death only, and never for fun. (She's so sick of Skittles anyway, that she wouldn't even want them for fun.) She doesn't want to go back to the hospital so she won't try to pull one over on you. However, you need to keep an eye on her blood sugar readings at all times during the trip, because if it ever goes below 80, you need to give her some of the candy to bring it up. Do NOT give her insulin with this candy, although anytime she eats anything else, you do need to give some insulin. (We'll get to that.)
How much candy do you give, you ask? Well, give it your best guess. Every day is different, so we never know for sure! You can't give too much, because she could go too high and get very sick from that. But if you don't give enough, she might keep dropping. At that point, you need to make sure she stops all active movement, which I guess might be a problem during the field trip. So, you might need to carry her. You can't let her drop too low or else she will have seizures or lose consciousness. (But remember, like I said, don't let her get too high, or she could get very sick from that, too. You have to keep a balance.)
You need to be prepared for that case of her possibly dropping too low and passing out. There is a special needle with her supplies to use in that instance. It's the big one, not the smaller, every day needles. You must use the right one. Hopefully you will have enough time to read the directions with this needle, because you actually have to mix the solution and fill the syringe before you administer the shot. You're okay with giving shots, right? If not, she could die, so I sure hope you are!
By the way, if any of this is done wrong, you will have to have her sent to the hospital. And we really can't afford another hospital bill, since the supplies we buy to keep her alive, even after insurance, has cost us thousands of dollars. We WOULD like to save some for college, so no, can't afford more medical bills. I'm going to have to ask you to pay those bills for me.
I just realized that I haven't explained to you the exact timing of her snack and lunch, determining the number of carbs in everything she eats, and calculating the proper dose of insulin to go with it. Yes, she does need both the snack and the lunch, and they have to be on her timing, which may or may not match up with the school's timing. They're used to it. They will probably go on without you, and you can catch up.
My daughter carries an iPhone with her, and that may not be permitted in the building, but again, that is a medical device for her. Her continuous glucose monitor is transmitting to the bluetooth in the phone. It will alarm when her blood sugar is too high or too low. If you are in a show, they might frown on that alarm, having asked all phones to be silenced. But again, medical device. The alarms are necessary. When the alarm goes off, you must take her out of the show and judge how you need to correct the blood sugar. Do your best, but don't screw up, okay? And sorry you're missing the show.
I should let you know what to do with other emergencies that could come up with no warning. Her insulin pump could detach from her body, just from bumping her arm! Or, the pump could just stop working. That happens on occasion. You will have all the replacement pump supplies in the supply bag, as long as this only happens once. You will need to measure out the insulin from the vial into the syringe, and make sure all the air bubbles are out before filling the pump. Then you need to give her the injection to connect it. (By the way, she hates this, and has never let anyone other than me do it. Hope it works for you, though!)
Well, there are a few other things to look out for, like how much activity she's getting, how anxious she might be, and how the bus ride goes. You don't want to be too far away from her. Oh, and you will probably have a group of a few other kids to watch too. Hopefully, they aren't too much to keep track of. I feel for you - managing the needs of my other non-T1 kids and the one who does have it makes my head spin.
But, hey, I am happy to get this break during the field trip. Sometimes it gets to be a bit much for me, and I'll be looking forward to a few hours of not thinking about it. Thanks so much for offering to take care of everything for me. Enjoy your trip! (and please don't kill my kid.)
Let's play would you rather, okay? Here you go.
Would you rather…
Take the time to dress everyday to present a good image to those around you?
Dress like a bum (or for the gym, etc.) and run the risk of people thinking this is what you look like all the time.
(Have you seen this meme before?)
I've been a little tired lately. Not just from my usual struggles dealing with insurances, doctors, pharmacies, and so on. Not just from waking up in the middle of the night to correct a high blood sugar or coax sugar down the throat of my sleeping child whose blood sugar was crashing.
But physically tired from something that has nothing to do with diabetes. (Imagine that! There's more to life than diabetes sometimes.) Still, since I was not feverish or injured on this particular day, I went to the gym. Because I do that.
As you can imagine, I came home more tired than before I went. Rejoicing in the fact that I had no appointments, lessons, or practices to which I would need to take any children in the evening, I decided to bum out.
After my shower, I put on no make-up. I didn't dry my hair. I couldn't get into my jammies, because there was still a child I needed to pick up after school. But since that didn't involve getting out of the car, I threw on some bummy clothes. An old shirt with a big coffee stain on it. Jeans that had holes in all kinds of wrong places, but so comfy.
Then I sat back and watched the rain outside. The pouring rain. It made me sleepy, and I almost took a nap. Almost.
It was odd for me not to have planned for this, but of course, that's probably exactly why it happened. The call from the school nurse. At dismissal time. Three out of five days this week, I had to pick her up from school because her blood sugar was too low to ride the bus. This was one of those days.
Doggone it! No nap.
The secretaries at her school have seen me in all kinds of states. I used to sub in the school, so they saw me ready to teach. But lately, they have seen me like I was on this day. And bless them, no one pointed out the holes in my jeans that no one was supposed to see. (I didn't have time or energy to change my clothes before going to pick her up.)
Once I was called in the middle of a racquetball game and told that her Dexcom transmitter - a small grey device not bigger or heavier than a quarter that attaches to a needle inserted in her arm to read her blood sugar - had fallen off her body at some point around lunch time. That little piece of plastic can be replaced… at my out of pocket cost of a few thousand dollars. So, I left the court, sweaty and smelly, and headed to school. The cafeteria was empty, and the custodians were asked not to clean up until I looked around.
So, you got it. I went through the trash cans - the elementary school lunch trash cans - to find that pricey piece of plastic. After only 2 cans, can you believe it? I found it! Then I walked down the hall of the school to the nurse's office, sweaty, smelly, and now covered in trash. (Though I had a huge smile on my face, having saved that money.)
That may have been my lowest, but that's who I am now. That parent who shows up at school at any point in the day in any just-rolled-out-of-bed condition. Sometimes when I ring the doorbell at the school, I am hoping the secretary doesn't actually recognize me in my messy state, but (*sigh*) she always does.
So when you see me at Target, looking much like a slob, just know that, yes I am aware I am in public. I just don't care a whole lot anymore. Enough people have seen me at my worst that I no longer fear it.
Now, listen. I know. The worst part of diabetes is NOT how I look. It's not even about me at all. It's just another thing I want people to know about. Other D-Moms (as well as parents of other children with special needs) are saying "Yes!" and high-fiving me while in their own yoga pants and messy ponytails. And it gives non-D parents one more thing to be thankful for - the blessing of choosing whether or not you want to get dressed for the day.
Is this a thing? I mean no disrespect to those who actually suffer from real, medical dementia, but I had no other word to describe it. If you are a D- Mom or Dad (parent of a diabetic child, for those not yet in the know), I bet you know what I'm talking about.
Here's why I ask. I was running a class for kids at my church the other night, and I ran out of lesson with 20 minutes to go. I always do, but part of that is intentional, so we can play games. This evening, we played Heads Up, Seven Up. (For any of you who had a deprived childhood and missed this one, basically, everyone puts their head down on the table and closes their eyes while a few "it" people tag them quietly. The tagged people then have to guess who tagged them.)
We had a small class. Everyone had to play, and even then, it was a pretty even match. Still, after the 18 seconds or so it took for everyone to pick, I could not remember who I picked when I was it. I kept hoping not to be it, because there was nothing I could do to remember whom I picked each time! I wound up assigning a teen helper to remember for me.
And that's not it! Daily, I forget something. I have checklists galore, and my kids are set into routines so that they can pretty much fend for themselves. I leave the youngest child's lunch box out so I remember to pack it every day.
And still, when giving the kids dinner, every day - EVERY DAY! - I forget to give the D-child her milk, for which I have already bolused (given insulin). Sometimes, she will start to dip at night before bed, and we are chasing our tails, trying to figure out why she's going low. Yup. Open the fridge, and there it is - the cup of milk I poured and never served at dinner. SMH.
Please tell me this happens to you too. Tell me that your mind is so pre-occupied with trying to calculate insulin and time meals that you forget important things too. I've heard we only use 8% of our brain's actual capacity. Don't you think God might want to open up another percent or two for us to store things like our children's names and whether or not I put the wet clothes in the dryer?
Maybe He did grant me that extra percent, though, and my brain has just been mishandling it. I mean, I have been TRYING to use it for important things, like memorizing my kids' social security numbers, since I have to use those so often for insurance, it seems. (I'm almost there! I have one of the three down…) and putting all the correct supplies in her diabetes bag each time we go out. BUT then, sometimes, my brain will instead occupy itself with the constant reiteration of that annoying My Little Pony Song. Grr...
Playing mind games is supposed to keep your brain sharp, and other tricks too. So I work my daily Jumble puzzles and brush my teeth with my left hand on occasion. When I remember. I also have a bit of OCD, and can't stand odd numbers, so I can't end my Jumble game with an odd number of points. It almost makes me afraid to play the next game. Like I need one more thing to worry about! So just forget it.
Now I am filling my brain with all kinds of other new information too, like which university is conducting the trials with the BCG vaccine, how the the bad T-cells might be suppressed, and what the status on the bionic pancreas is. That is the hopeful stuff.
Then there is the junk I need, but I'd rather get rid of, like which doctors take our secondary insurance, who can be considered a PCP, how to get a medical release in the right hands, and what the due date for certain insurance information is.
That stuff is crammed in there, I guess to replace words that my brain no longer thinks are relevant in life, like, "blender." (Yup, couldn't come up with that one to save my life last week.)
I guess my brain knows what's important for now, and it's apparently not the word "blender." It's being as well-informed as possible about the newest developments in the world of diabetes so that when the cure is found, we are the first ones in line for it. (I promise I won't push any of you out of my way, though.)
In time, after she is cured, perhaps D-Mom Dementia will go away. Maybe I will remember my kids' names, and who I tapped in Heads Up Seven Up. Life will be more fun and carefree then.
But I just hope it happens before I'm old enough for regular dementia to set in.
I'm a sucker for those memes that show different perspectives of jobs, etc., in six pictures. I've seen a few for diabetes, but decided to go a different route that might provide a laugh for those of us in the T1D world and a little enlightenment for those on the outside of it. See what you think.
What the World Thinks: Candy! Oh boy.
What the T1 Kid Thinks: I must be low.
What the World Thinks: Candy! Eww, but it's the yucky kind.
What the T1 Kid Thinks: Mom wants my low to come up fast.
What the World Thinks: Oh no! I'm outta here.
What the T1 Kid Thinks: Oh good, it must be time to eat.
PDM (Personal Diabetes Manager/ Pump Activator)
What the World Thinks: Hmm, let's play games!
What the T1 Kid Thinks: How fast can I input my carbs so I can finally eat?
What the World Thinks: Ouch, that might sting my cut.
What the T1 Kid Thinks: (Nothing. This is just part of life before testing sugars.)
What the World Thinks: Thirsty...
What the T1 Kid Thinks: High blood sugar...
What the World Thinks: Oh My Goodness, are you kidding?
What the T1 Kid Thinks: Darn! No snack.
What the World Thinks: Ugh, Ewww, I might faint!
What the T1 Kid Thinks: Quick! Get a test strip! I can use this!
What the World Thinks: The nice lady I see once in a while to take care of my boo boos.
What the T1 Kid Thinks: Like another mom to me. I see her every day and we know each other well. She really cares about me.
What the World Thinks: Yum!
What the T1 Kid Thinks: I must be high.
Worried Look on Mom's Face:
What the World Thinks:She must be doing taxes or something.
What the T1 Kid Thinks: My blood sugar isn't right.
What the World Thinks: Ooooo, shouldn't have that in school...
What the T1 Kid Thinks: Good, I'm in range and don't have to test my blood sugar as much.
What the World Thinks: Yum!
What the T1 Kid Thinks: No! I want to eat it all, but so many carbs….
What the World Thinks: I'm going to pet it and feel happy.
What the T1 Kid Thinks: I'm going to pet it and regulate my blood sugar.
What the T1 Kid Thinks: He's going to tell me where my blood sugar is.
The world may look at this and think, "Hey, that's what the parent is thinking, not the kid." But no. When diabetes is your life, you grow up pretty quickly and need to start thinking like an adult when it comes to food. It is a difficult part of life, but one we get used to. I'd love to hear more of these from the T1D community! Please share in the comments.
It's been a long day. The kids have been off from school for a solid week now. And of course, their dad had to go back to work. (Shout out to you single parents, especially those with a T1 child. I will never know HOW you do it!)
For those in our family at home this day, it didn't start too badly. We got to sleep in. (Especially good for me, since last night's football game went into OT.) And the blood sugar of my T1 was just a little higher than target. I like those days - there's a little wiggle room before breakfast, in case she dilly-dallies.
After breakfast, attitudes took a downward turn in our house. Something about not wanting to get dressed, then something about someone annoying someone else … and well, I think there was punching or something too, and not listening to requests to stop.
Can you see how much I was paying attention?
Dinner was rock bottom for the day. First, one child wouldn't do what I asked, so I got attitude. Another child absolutely refused dinner (something that was supposed to be a winner, from Pinterest even!) after trying it.This child was content to not eat at all for the night, but rather just complain about hunger pains.
Then there was our T1 child. She was already in a bad mood to begin with. Something I did or didn't do struck her the wrong way, and her usual response - "You don't love me!" - came rolling out. And now, at dinner time, with BG at 112 and dropping, we have this conversation:
Me: "What do you want for dinner?" (If she won't eat what I made, it's cereal.)
Child: "I'm not going to eat dinner tonight. You hate me."
I'm not fighting that. I know I won't get anywhere. So I decided to wait until she actually got hungry. Half an hour later, BG 98 and still dropping.
Me: "Are you having cereal tonight for dinner?" (There was no pushing the chicken tonight.)
Child: "Did you hear me? I am not leaving this couch tonight. I am not eating dinner."
Okay. Let's just hope blood sugar levels out in time for her to get hungry.
About 10 minutes later… BG 89 and level (hallelujah!)
Child: (as if the conversation was still happening) "Unless you make me pancakes."
Pancakes! Was she kidding? I just made a chicken dinner. I still had all those dishes to do. I even baked biscuits. I did NOT want to get out new dishes to play short order cook. And don't get me started on rewarding the sassy behavior by giving her what she wanted.
But neither did I want to fight this fight. Here's what could happen:
I could tell her no way. She was going to eat chicken or cereal. Well, as you know, you can lead a child to dinner, but you can't make her eat. (There was always the option of giving the food and punishing until she ate it, but here's the kid who pushes it to the limit. "Take a bite or you lose electronics tomorrow." "No." "One bite or you lose electronics for 2 days." "No." And so on.)
The bottom line would be that she would not eat to prove her point (in some twisted logic) that I don't love her. I could keep calm and explain to her, even though she already knows, that her blood sugar would continue to drop. She would eventually pass out, and I would have to give her a shot with that huge glucagon needle. "So?" She wouldn't care. She knows she wouldn't be conscious and wouldn't feel it. I'd tell her we'd have to go to the hospital for more help. "So?" She doesn't remember anything from the hospital last year except the therapy dog. Good luck talking her out of its detriments. (Oh, and in case you are wondering, hugging her or otherwise explaining that I DO, indeed love her does not get me very far.)
What hurts is that I KNOW the right parenting thing to do. Here's what the perfect parent would do:
Parent: "You will eat what I made."
Parent: "Fine." takes away dinner. "Let me know when you are ready." Turns down basal.
Child: Not eating.
Parent: Suspend basal. Watches carefully.
Child: Eventually passes out. Because she will.
Parent: Calmly gets out the glucagon, sets it up, and administers the shot, just as she remembers being taught at the hospital over a year ago. Calls endo to make sure nothing else is needed. Finds car keys, just in case the problem is not solved and a trip to the ER is required.
Child: Wakes up, possibly throws up, feels awful, and definitely learns her lesson.
What did I do? The wrong thing. I made pancakes. Why? Because, seriously, it was easier than giving that shot with the super long needle that I've never given and going to the hospital.
I'm too lazy to teach my daughter the right lesson. What she learned instead was that diabetes has given her leverage to get her way. She is going to grow up with this knowledge, continuing to use it against us, until she becomes one of those entitled young adults who thinks the world will bow to her needs. And then she'll be rudely shocked when it doesn't. (And rightly get angry with me for not teaching her this.)
I will have to fight that battle in another way, with hope and prayer. Maybe (probably), I will get another chance to teach her the lesson that she can not threaten us with her death to get her way. I will, at some point, have to save her from the brink of death. But not today. Today, I am not letting her get that close to the ledge.
In the meantime, I can hope she gets that her mom cares about her life enough to take it seriously.
I realize I don't have a big lesson in this post. You didn't learn anything here. It's just a story about my day. My long, long day. But maybe, for any of you other D-moms or dads out there who ever knew you didn't do the right thing - for the sake of not getting on the news for endangering the health of your child - maybe it rings a bell for you. Let it be confirmed that you are not alone. And if it is you, I hope you have a better day tomorrow.
Although I have been posting about our journey with Type 1 Diabetes on my regular blog, Passion Under Grace, I will soon be moving those posts to this blog, for those interested in reading only about those stories. Also, from here on out, all my posts relating to T1D will be on this site. If you are in any way affect by this disease, and early waiting for the cure as we are, then please consider subscribing to the blog for something to read "while we wait."
While We Are Waiting...
My youngest child was diagnosed with Type 1 Diabetes in 2014, when she was 7 years old. This blog tells the stories from our life with T1D, while we are waiting for a cure!