First night home freak-outs

HI! On the 16th we took our 8 year old daughter to the ER because she was lethargic and had been throwing up the night before. We had also noticed her breath smelling like acetone recently. Her BS was 492 and she was in DKA. Welcome to T1D. We were transferred to a hospital an hour away because they had a PICU with pediatric endocrinologists on staff. We were released this afternoon, once her potassium was back up. They gave us a sample Dexcom G6 transmitter and had us link it to my phone. It has been off around 20 to 60 points compared to her glucometer. At 2:00 her BS was 265. Needless to say, I am a bit freaked out. Her doctor to me not to overly worry about it getting too high over night, that we’re still figuring out what will work for her, but it is really hard not to worry. Sorry for the long post, I just needed to share with others who might understand. Thanks!

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Hi, Dawn, and welcome to TypeOneNation! I’m so sorry about your daughter’s diagnosis, and the traumatic way it developed. Of course you’re worried (even though I’m going to tell you that a 265 once in awhile is really no big deal, and is 100% expected). This is all new and your only experience with high BG so far has meant an ER visit!

The good news is that you now know what’s wrong, and there are very good treatments available to help your daughter keep her BG more or less where it belongs most of the time* — and that means she can live a long, healthy, and very full life, doing really truly anything she would have done before. There are professional and Olympic athletes, famous actors, rock stars, pilots (didn’t used to be able to fly planes with T1D, but now you can), models, firefighters, teachers, scientists…. literally she can be anything with T1D. Supreme Court Justice Sonia Sotomayor has T1D, and so does former Prime Minister Teresa May. Your daughter’s life is going to be absolutely terrific, just little more complicated than most people’s.
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  • I used that fudge language about keeping her sugar mostly in range most of the time on purpose, because with T1D, “excursions” are inevitable. One endo told us when our daughter was diagnosed that he often has parents tell him they want to keep their kids’ BG between 80 and 120. He smiles gently and says, “I wish your child didn’t have T1D, too.”

But the tools today are really good, and plenty of posters on this forum have lived exactly the kind of life you want for your daughter. I’m sure you’ll be hearing from some of them. :slightly_smiling_face:

Hang in there, and post anytime. You can do this!

Hi @Dawn9413 and welcome to the forum. I don’t blame you in the least for being freaked out especially having been sent home with so much to learn. Thankfully her numbers are coming down and you have a CGM so you’ll know how things are going. It’s also great that you recognized the symptoms of DKA - or if you didn’t define it as such, you knew to get them checked right away.
I’ve been Type 1 since the early 1960s and am doing well - no complications. We didn’t even have BG meters until I was out of college, and pumps and CGMS followed several years later. So there’s great technology to help now, and a variety of insulins - your doctor will guide you on those.
Wishing you all the best in this new journey for you and your family. It is frightening especially since you’re starting at the base of the learning curve. Thankfully your daughter is old enough to communicate with you and learn too. My first suggestion is that you you find an endocrinologist who specializes in Type1 (endos have different specialties) in kids. An office with a diabetes nurse educator is great because as the title suggests, that person can work closely with you on education and may be more result available to answer questions.
I’m glad you found the forum. You’ll find lots of support and can read posts from parents who started off where you are and have climbed and continued to climb that learning curve and gained confidence in the process.
You’ll see lots of suggestions on the forum that come from experience, but we’re not medical professionals so get definitive guidance on what to do from your doctor.
That’s enough rambling for now. You, your daughter and your family, take care. You’re in my thoughts and prayers.

Please check out my writing partner and her type 1 daughter as they explain t1d Type 1 Diabetes Q+A w/ Lainey! - YouTube it might be nice for your daughter to see another type 1 Type 1 effects mental health so much. Lastly we mail out little letters of support to type 1 kids. We want type one kids to know they are not alone and like the main character in our book they can manage type 1 with family, mental health support and a wee bit of magic :slight_smile:

Hello Dawn and welcome to the forum. I’m sorry you and your family feel you’ve been put into a sink or swim situation that you’re experiencing as we speak, but just know you and your daughter will get through this and become pros. Right now y’all are in a shock status and looking for answers and guidance and that is a natural response to help your child. There is info all over the web to help in finding answers, but be sure you find an endo that specialises in ped T1D’s to confirm what research is best for your daughter because every T1D is different. Her CGM G6 will be invaluable to get her regulated. I know her DKA incident was terrifying for everyone and you’re terrified of it returning. You will learn about boluses and dosages to counter BGL spikes just don’t stack doses which could cause a low BGL when they start to overlap. There is one thing to keep an eye out for and it’s called the honeymoon phase that could cause a low BGL. It’s when her pancreas could start producing insulin again for unkown reasons and for unkown amounts of time. When you give her her insulin and her pancreas starts working again it can be like taking too much and will need to be corrected with carbs and sugar to stop her BGL from dropping too far. Her CGM will alert when her BGL is dropping and immediate attention needs to be given by way of sugar and carbs because low BGL’s are more dangerous than occasional highs, just don’t over compensate with the goodies. It may be advisable to talk to her doctor about a RX for Glucagon an emergency injection if a low results in her becoming unresponsive and unable to swallow, also call 911 if you’re uncomfortable with that type of situation. I’ve rambled on too long so I’ll stop now. I don’t want anything I’ve said to scare you, but it’s just info that you should be aware of, and hopefully things will be uneventful. These are issues that I and other T1D’s have experienced but remember that we are not doctors and you should consult her doctors to discuss anything regarding your daughters well being. Please keep us informed on how she’s doing and take care of each other.

@Dawn9413 , there are many pieces missing from your orientation to the Dexcom G6 CGM. I have not seen this in the comments above.

I am going to share this from a little humor, anatomy and physiology and an insulin pump person (your not there yet) trying to get all of the pieces of Humpty Dumpty together again.

CGM Calibration Facts & Rationale to Avoid Pitfalls

CGM Calibration Facts & rationale to avoid pitfalls & rabbit holes
NOTE: The term “rabbit hole” comes from the 1865 piece “Alice’s Adventures in Wonderland” by Lewis Carrol 1865 and has come to mean a bizarre, confusing, or nonsensical situation or environment, from which it is difficult to extricate oneself.

Test by finger stick (FS) anytime CGM doesn’t seem to match the way your maternal gut thinks about your child. Mothers have a special sense.

Learn & verify acceptable deviation according to FDA approvals, ±20% above 100mg/dL and ±20mg/dL below 100. Examples, CGM =200, then FS can be between 160 & 240 and still be fine, or CGM = 70, then FS should be between 50 & 90 with level CGM.

Wait 60 minutes between tests if testing for CGM for validation / calibration with a level CGM line if possible.

Remember, CGM measurements are interstitial fluid and finger sticks are whole blood and glucose doesn’t move instantly.

Whole blood & interstitial fluid are physiologically different & 15-20 minutes apart in the movement of glucose.

Call tech support if 2 tests are >20% off, 1 hour apart. You may need a new sensor or have other technical issues.

Only enter calibration with great consideration. This reduces the number of times you will get into the calibrate, calibrate, calibrate, rabbit hole. There are many who have avoided or not needed calibration for months after understanding the CGM actions.

If you are calling tech support for a goofy sensor, request replacement, regardless.

Follow tech support about changing a sensor.

Avoid the calibration rabbit hole of the system requesting multiple calibrations for hours and sometimes days.

Why FSs & CGMs don’t play nice together.

First, FS & CGM are only expected to be within 20% of each other according to published standards accepted in the USA by the FDA. If your CGM says 200 then ±20% is ±40 mg/dL meaning a finger stick is fine if it is between 160 & 240. At the same time if CGM says 100 the ±20% would be 80 to 120. BELOW 80 it is ±20 points (mg/dL) without the percentage according to US FDA standards.

NOTE: Some individuals expect much narrower values between FS & CGM, even to the point of expecting them to match spot on, every time, all the time. This is unrealistic and anatomically nearly impossible.

Second, as food is eaten, the food enters the blood stream in various places along the digestive tract. Some enters quickly from the mouth, like granular sugar placed under the tongue. Other foods swallowed quickly may not enter the blood stream until arriving in the stomach. The final absorption occurs in the small intestine.

After food is absorbed into the blood stream, it is ‘checked’ by the liver and then dispatched thru the body in the blood stream.

After glucose is in the blood stream, the glucose moves in the liquid part of the blood (sometimes referred to correctly as plasma or serum - like serum or plasma glucose for the doc’s office or hospital blood test) into the interstitial fluid that moves around all body cells outside the blood vessels. It is this interstitial fluid that CGM sensor wires are in to read the glucose and report it to our measuring devices.

The time for all of the glucose movement to take place is usually 15-30 minutes or more, depending on multiple variables including the amount of carbohydrates, proteins, & fats in the consumed food which changes the way the food is processed in the body.

It is this 15–30-minute interval and body fluid differences that give significant part to the variation in CGM and FS readings. This is also the reason most comparisons are done when glucose values are demonstrated level by the CGM before doing comparison finger sticks.

Wish they would play nice together……

Hello and good morning. I just wanted to check in and see how you’re doing. If you’re feeling confused and overwhelmed, that’s normal - hang in there, things will get better what time and education.
You said you were sent home with a sample Dexcom - I’ve used Dexcom for years (a couple of decades maybe) and it’s awesome - it gives me huge peace of mind. I imagine she will be staying on it for the long haul, or perhaps another CGM and perhaps even a pump. Lots of people do well on injections and even prefer them, which is fine. I just wanted to say - if you continue with the CGM and/or get a pump, don’t try to navigate the insurance on your own - it can be daunting even for those of us with experience with Type 1.
Keep this in the back of your mind: if you choose to use either of those devices you will be assigned a rep who will work with you. They will do the initial check of your insurance coverage and may suggest particular supplier that contract with your carrier (I chose to switch recently and asked my rep for recommendations - she was very helpful getting me on board with the new one). Let them take care of the background work - they’ll let you know about anything you need to provide as far as prescriptions and authorization from your endo, and you can use your time to train and learn.

Thank you all for your responses! I have been reading them, I just haven’t had the brain power to reply until now. We are slowly figuring things out here. We’ve upped her Lantus at bedtime to 10 units and changed her Humalog to 1 unit every 15 g now. The meals where I know she will eat everything, I am dosing her before she eats and that is helping with the after meal spikes. Thankfully she has gotten used to the finger sticks and insulin shots and barely complains now. I absolutely lover her endocrinologist! He has been available every time I have called, given me reassurance and support as well as some more confidence in myself with her treatments.
I am now dealing with trying to wrap my head around outfitting my 8 year old with a smartphone so that her Dexcom data can be shared while she isn’t with us. :confused:

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See? We knew you’d get this under control. You’re sounding like you and her have been doing this for a while. It’s fantastic that her endo is supporting your efforts and helping you realize y’all have got this. Good luck with the smart phone project, I’m sure there are others that are using this tech and will be able to guide you to succeed. Tell her we’re proud of her for cooperating and that she is doing great, 2 tumbs up. Just make sure that you set the lancet injector to a swallower setting to prevent too much pain in her little fingers because her skin isn’t as tough as us old dinsaurs. Let us know how things progress, and remember we’re here for you and her.

Great to hear you and your daughter are starting to settle in to the new normal, and that your endo is so terrific!

FWIW, if you don’t want her to have a cellphone, there are workarounds. At 8, I’d guess she’ll always have a responsible adult nearby, and you can leave that person with instructions. We did that for our daughter, and it worked fine. The Pink Panther book has a section on leaving directions for other caregivers (sitters, grandparents, etc.). If you didn’t get a “Bag of Hope” (which includes the Pink Panther book and Rufus, the bear with diabetes, along with other goodies) when she was diagnosed, you can request it here:

Pandemic permitting (we’re still waiting on a vaccine for the under-12 set ourselves), I definitely encourage you to let other people help. It’s good for you, your daughter, and the helpers, too. People like to help. It makes them feel useful and valued. Plus you get a break, and your daughter learns you’re not the only one she can turn to.

And the Dexcom data’s not gone if you don’t see it in real time. You can download it whenever you like, and it uploads automatically once a day (at midnight) as long as her receiver’s connected to WiFi, so you and her medical team can look for trends with Clarity or Glooko or whatever.

Just a thought. Obviously, plenty of kids’ parents give them phones. But if you don’t want to, that’s fine, too.

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Greetings. You sound like a very capable and caring parent for your sweet child with t1d. Our toddler was diagnosed at 14 months during the pandemic. Have you heard of SpiBelt? It’s a handy way to have her phone (if you choose that route) on her at all times. Our toddler’s phone has no data but relies on wifi and hotspots, which could be an option for you, depending on your lifestyle. Best of luck to you as you learn this new world. Welcome.

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Glad to hear you are doing well and coming along! When it comes to phones you may not need to get the latest and greatest. You’ll need to do some investigating about compatability but an older model might work just as well.
No diabetes component here but when we got my stepdaughter a smartphone going into high school we purchased an older model iPhone off of eBay. It wasn’t as fancy as the most recent but it did what she/we needed it to do at a fraction of the cost. If you know of someone who has kept an older phone they might be willing to sell it to you or at least let you see if its operating system works with Dexcom Share.

Welcome to the forum and welcome to Type 1 world. Do not fret though, all of this will be common to you in less than a year. Being so new you have a few shocks ahead but you and your daughter will survive. Something that still frustrates me is I can have the exact same meal on 2 different nights and take the correct bolus and one night you will be a perfect 104 and the next you will be 265. Just our beautiful but sometimes demented body doing it’s thing. FYI all of my basals are considerably higher during my meal periods but I would talk with you endo and maybe even a dietician to help you get the hang of things. (Get a pump also if you can.)

@Dawn9413, it has been a week. How are you two ladies progressing with this journey?

Support is here…

First week in and we’re kind of settling in more. I found a used phone and I will be hooking her up with service before school starts back in the fall so that we can track her numbers and the school nurse can as well. We have a follow up with her endo on the 7th. After experiencing the lows twice and the highs several times this week I know that we have a whole lots of adjustments to go through before we get it figured out, and then it will change again! But we are ready and so is she.

The overnight spikes are the scariest thing for me right now. She can be doing great all day and then once she is in bed it starts going up to 250+. But by morning she is back in range. So I will be talking to the doctor about that.

I got her Medic Alert ID tags and am looking for someone to make strong bracelets for them now. I also got “Think Like A Pancreas” and “The World’s Worst Diabetes Mom” and am in the process of reading them.

Thank you all for being so supportive!! With this forum, her endo, her dad (we are together), my mom, and my sister all being there for us it makes things a little less scary.

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Hello Dawn, You and your daughter sound like y’all have got a great start on keeping control of her little monster even though it’s escaping a little to keep you on your toes. Hopefully with some discussions with her endo, you will get things fine tuned and feel more comfortable, but remember just when you think you’re winning the little monster picks it’s lock and messes your plan up. It’s known as the new abnormal norm. Y’all are doing great, keep reading and let us know when you get time of how she’s doing and tell her we’re proud of her progress and be sure to take care of each other.

It sounds like you’re making great progress!
Regarding her ID, you could have a jeweler make a bracelet for her. I make jewelry but never made my own bracelet or necklace as I don’t solder and it would be best for the rings to be soldered to the holes in the piece.
Another option would be to register with Medical IDs for All | The Original MedicAlert ID
They have a wide selection of necklaces and bracelets and other types in metal, silicone, leather, etc. I update my membership as needed with emergency contact, doctor info and other helpful infirmation. I’ve been a member since around 1965.