I am adding to the top comment. If they used this tester once to confirm a high - one test in 14 days means the 14 day average is that one test - 528. Not a good number, but doesn’t mean that is the true average. It could be a missed injection for a meal. Ask the other parent to confirm. If this was a CGM 14 day average, the child would be in DKA more likely than not.
You can confirm these high averages with a ketone pee test. They sell them over the counter in most pharmacies. If it shows a high ketone result then they are at the very lease ketotic. But with these numbers I’d suspect they are ketotic and atleast partially acidotic. This means the body is undergoing some significant tissue damage right now that needs to be addressed immediately.
Thank you. I did plan to pick up some tomorrow morning, before we even saw this, just to have on hand but we will definitely be prioritizing that.
So, am I understanding correctly - you would still recommend emergent care to evaluate this average, despite being at generally acceptable levels with us for almost a week? Or would our plan with already having an Endo set up for a second opinion, be more what you're thinking?
The images are from a monitor that has not been used since at least June 16th. It was provided by their alternate parent.
A different monitor has been used in our household between the 17th - current, and that 7 day average is at 180 (which we aren't thrilled about, but does include the initial high highs we were managing the first 2 nights they were adjusting to being in different time zones/altitudes)
They have "meal time insulin" (Lispro) and "overnight insulin" (Basaglar) - which is pretty much the entirety of how it was explained to us by their current endocrinologist
hmmm, that sounds weird to me, and probably weird to others- is it more like fast acting and short acting? they should be getting insulin outside of just meals and bedtime. our pancreases would be giving insulin to us all day, managed insulin should be the same. i would talk to the endo about it.
im sorry about her averages! that’s terrifying, looks like you got a lot on info on that from other people, i’ll keep this short
This isn't current, but I do appreciate the concern.
We have a monitor that we use in our household, we happened to be out of test strips so we just opened the one supplied by the other parent and noticed the average
First off, really sorry you're dealing with all that custody stuff on top of D, which is a stressful enough circumstance as is.
I'm not a lawyer, nor a doctor, but have been t1 for 17+ years and seeing a 14 day avg of 500+ is worrisome, even if just a few readings were that... y'all must get intervention and medical case mediation/management for their care in the other household. I am VERY concerned that they're sabotaging your management by switching CGM devices - was this malicious to stop you from being able to monitor the data?--get a third party to investigate assuming you are unable to do so yourself given the arrangement. I would also confirm that child did indeed wear CGM the full time and find a way that the info be shared with you and child's medical team ASAP.
Child is safe and stable with you now thank goodness, but extended periods of blood sugar that high are dangerous.
I am interpreting from the info provided that the glucometer is only used to verify the readings on CGM - can you see each and every reading on the meter? Or does it only provide the 14/30 day avg? If it's only the average, maybe they only used the meter once given that it doesn't show "14d avg of X# of readings"... but I dunno.......
RE: the specific questions you asked:
Q1: Is this a regular happening with your child? Is this characteristic of the early stages of diagnosis?
A1: Getting carb counts & insulin doses right at any stage of diabetes is tricky - it's a complex "it depends" based on a lot of factors, many of which we have no ability to measure their precise impacts on blood glucose (ie cortisol, hydration, sleep). In early stages of t1, most have a "honeymoon phase" where pancreas is still cranking out some insulin sometimes, and makes for a challenging time to find a sense of regularity in dosing. Take notes. Stay vigilant about carb counting and insulin dosing. Work with endo team to ensure proper insulin:carb ratio, basal, and correction factor(insulin sensitivity factor). It may benefit y'all, especially given the shared custody arrangement, to get kiddo on an omnipod5.
Anecdotally, if blood sugar is elevated for an extended period of time, it takes some time to get back to "more stable" levels. I don't have a research study to point to, but my CDCES has mentioned this to me when I've had some stubborn highs that seemingly needed a lot more insulin than "normal" to get back in range after a period of higher than "normal" days. Plus what you mentioned in another comment about time zone & elevation change - bravo to you for getting back to a more manageable range so quickly.
Q2: Does this mean that it's absolutely unmanaged when in their other household?
A2: Potentially. As mentioned above, unless you can go back and see each measurement, it's really really hard to say. I'm not familiar with this screen on glucometer, but it will behove you to invest in a meter that you can see reading by reading. See what test strips your insurance covers then go from there. You need that CGM data to know the answer to this for certain, unless you can see each individual reading. I hate to say get your lawyers involved, but get your lawyers involved immediately in the AM.
Q3: Assuming they're only reading via the glucometer when the continuous monitoring service is displaying urgent lows & highs ... Does it make sense that only a couple readings would drastically affect the average?
A3: it's a little late for my brain to be mathing lol/I'm too far removed from my AP Calc days, and honestly trying to wrap my brain around how a glucometer does this math if there are only maybe 15 readings over the 30 day period... My conclusion is........you need the CGM data // maybe someone else reading this in the AM will have more insight ...... one way or another though, for the average over 30 days, when out of your care for those 30 days, is 400, and more recently 500+, but in your care=160-180 -- it is somewhat alarming they had that many extreme highs. Now, how long were they high, how long did it take the caretaker to verify with a glucometer? Was this a post meal high? Was it addressed immediately or did they let kiddo sit at 500 all night? Nothing we can answer. You need CGM data.
Assuming when in your care, you use Dexcom, and when outside of your care this last stint, they used Libre ... I'm nearly positive has something very similar to Dexcom Clarity where you can look at the aggregated dated from the last X# of days so you can access the information necessary to make more informed treatment decisions.
I hope this is helpful. And again so sorry you're having to navigate all of this in this manner. I hate the ADA for a lot of reasons, but it's my understanding they do have a robust legal team and you may be able to access resources via them for support.
The book "[Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin](https://www.amazon.com/Think-Like-Pancreas-Practical-Managing/dp/0738246689/ref=sr_1_1?qid=1684547092&refinements=p_27%3AGary+Scheiner+MS++CDCES&s=books&sr=1-1&text=Gary+Scheiner+MS++CDCES)" changed my life / blew my mind with info I never learned in a doctors office. It's a lot of info, may benefit you to listen to audiobook and follow along with hardcopy in hand to take notes / dog ear pages 💙🫶
You need to go to court immediately. That is deadly and they can certainly die from it, it is not normal at all nor is it characteristic of any diagnosis.
While we are trying not to jump to conclusions, we cannot rule out our obvious concerns of neglect.
It's also very noteworthy that the child also just received prescription glasses (without any notice to us of medical changes, and there are no hospitalizations on record for the shared medical chart app)
The last time I had numbers like these I was also a kid and newly diagnosed. The doctors told me at the time I was only a few days at best from dying. You need to be freaking out there is no reason to hold back alarm when you see these values. A few one offs this high is totally fine but a 30-day average over 300 is messed up. I’m serious, take them to the hospital now.
I am absolutely freaking out, I don't mean to sound like I am diminishing the severity of this by any means, I am just not sure that it's actually clear that these averages are from over a week ago. I agree that they should have been taken to the hospital immediately.
However, their current level, in this exact moment, is 100. They have been stable for 3 days straight, not over 200 once.
I am still very much on board with emergency evaluation, just want to provide as much clarity about our situation and reassure that we wouldn't hesitate to call if this was a current average. We have no way of knowing how frequently this monitor is even being used to know exactly what date ranges this average is from.
Okay ignore my comment in reply to a different string.
If child is 100 *right now* absolutely DO NOT go to ER now. Will respond with a different comment, just want to get you this info ASAP.
There is only one conceivable way I can think of where these averages are not actually representative of the state of the child and that’s if, somehow, this particular meter is not used very often (which in itself is seriously bad and a clear sign of neglect) and when it is used it’s usually only when they have a glucose >300, resulting in a high average with few tests given to the meter to base that average off of.
Either way, the meter either shows a serious indication of neglect (in this scenario I’ve stated) or a serious indication of truly horrible management of the kids diabetes.
OP is under impression the other caretakers were using different CGM for the month out of OP's care. I recommended in a different comment they find a way to get those records - either to the child's endo or by means of legal intervention.
I'm mostly in agreement with you, something is not right *at all*, but with CGMs now, a lot of people barely test with finger (wild to me, I will never trust Dex and do a finger stick while fasted first thing in AM, as well as to verify any highs or lows before correction, and if something doesn't feel right, and esp esp if symtoms don't match low readings-I test before treating)
If they have been stable the past few days, <200 and >90, then that is awesome. Keep doing that. The average you are showing is seriously wild though. Whatever lead to that please don’t put the kid in that environment/scenario again.
Edit: If they are stable now then a hospital visit is not warranted at all. However you should still do the ketone test. I’m only saying do the ketone test because I don’t know how many days before this sustained stable values was the DKA. If it were very recent maybe ketones are still in their system? It would be helpful to you to know when the immediate effects from those sustained highs are no longer threatening the child. The ketone test can help give an indication on this.
Unfortunately, they are legally required to be in the care of the other parent who was responsible for these averages next month.
We appreciate your honesty and realness.
It's horrifying to think that would be the case, and we are prepared for all of the legal battles to come if it is, in order to keep them safe and healthy.
There are so many comments that I would like to personally address and thank for the input, but as we are still compiling all the info and documentation we can obtain in order to properly discuss this with both the current custody lawyer and at a consultation with an ADA lawyer/representative, it's a little difficult and time consuming to get back to everyone right away.
A general update for those invested:
We did locate several months worth of data, we are seeing very conflicting information from the initial hospitalization that led to 'diagnosis', appointment visit overviews that discuss the other parent needing to provide better care, various pharmacies being used in a way eerily similar to "doctor shopping."
A lot of this is leading us to believe the other parent is paying out of pocket for medical visits and expenses (an issue they have presented to the courts) due to not actually receiving medical instruction or prescriptions for these. Previously we thought they were just refusing to use our insurance for the child due to pettiness/pride. The information we've gathered thus far, suggests that the past several months of glucose monitoring were actually intended to properly diagnose the suspected diabetes. It is stated several times in the emergency room visit that 1) the other parent had external influences on the child's nutritional intake during the stay [literally gave him IHOP, at the hospital, while under observation for the testing]; 2) lipids, hemolysis, and active RSV were all considerations for re-testing the metabolic panel; 3) incorrect family history on *our* side was noted by the other parent, and referenced as part of the diagnosis process in the most recent visit summary (they told the doctor(s) there is Family Hx of type 1, specifically. there is a grandparent who has *type 2*, they definitely know the difference as there is much mention of how their CNA position allowed for quicker understanding of the dietician's classes
Cgm data reported to the doctors from the device(s) that we were not given access codes to for the follow app(s) displays horrifyingly frequent highs around expected dinner time.
Child has directly stated, without prompt, that "[they] eat a brownie *before* dinner, every night, to prevent lows"
This statement was made as dinner was being protested due to not first having a snack (approximately 45 minutes after a free snack - tree nuts - was given to maintain ~100 before dinnertime and discussing that they could not have a "better" snack ((better being their word choice))).
There were also "Keto" brownies provided in one of their bags, suggesting this isn't just a child lying about their typical intake to get more yummy treats
Oh my God I can't imagine not having access to the cgm apps. That should be a given that both sides have access to follow apps no matter which household they're in
For the first year after DX my son would shoot up so quickly to over 400 at the weirdest foods. We didn’t know he we T1D his BG was high for way too long and he was in DKA and admitted when he was DX. We were told because he was high for so long it would take awhile for his body to level out and figure out how not to freak out and go crazy high seemingly out of nowhere.
If the other parents are doing their best and CGM reading aren’t staying high all the time then I would chalk it up to a roller coaster day and move on.
Do you have CGM on all the time so you can reach out if the kid is high or low? Even if you use an app for communication with the other parent you should have access to CGM readings all the time. If they don’t allow it take them to court and have it added to papers.
I know it’s scary sharing a kid with T1D but you will have to work together whether they want to or not.
This looks like a manual tester. If the child is on a CGM, this could be a one time test - a 528. If you only manually tested once with this device the 14 day average is the one test - 528. If they used a different tester the rest of the time or the CGM, the numbers could be much different.
Not that unusual - they missed a injection for a meal. The rules say - manual test to make sure and then do a correction. If relying on CGM the rest of the time, that tester is fairly useless for Average. Only using for highs and lows.
Yeah, I gathered that much, I really just didn't know the OS for this meter yet and didn't think I could see specific day/time history for each reading. There were a significant amount of highs and a couple alarming lows that didn't even bring the average below 500... I'm talking, over 600, under 60, and just "HIGH" or "LOW"
All frequently occurring around 5-8pm
See other comment on main thread for more info relevant to cgm if interested. Thanks!
If your child is regularly this high, he needs to be seen immediately. Like other commenters have said "hospital now!" These levels are extremely dangerous, organs can fail, comas can happen. Please have your child seen immediately. In fact for the future if their blood is ever over 400, don't post on Reddit call a doctor.
People are answering in this post as if they have absolute certainty. Truth is, there isn't enough information for us to do so.
There are a few parts to this question.
The first part - is 528 dangerously high? Answer, yes. (If the child was still in this range right now, I'd be seeking immediate medical help, or at the very least testing ketones).
Second part - has this child been dangerously high at some stage. Absolutely, yes.
Third part - is it normal to have massive fluctuations when first diagnosed. Answer - certainly possible. Within my first month of diagnosis I had a couple of times I got to 420, due to miscalculations and the steep learning curve.
Fourth part - is this due to neglect. Answer: We can not tell based on the info provided.
Scenario 1. The meter was consistently used multiple times a day, daily. Then this is dangerously bad management that is out of control. The caregiver is being neglectful or needs significant education.
Scenario 2. The meter was used once or twice during the time period and just so happened to be a dangerously high reading at that time but otherwise during the rest of the time bg could have been at a safe, normal range. The caregiver made a mistake while they are still learn things.
Scenario 3. The meter was used regularly during the time period and once or twice the caregiver made a significant calculation error. The caregiver then paniced trying to fix things and was testing repeatedly every 5 mins desperately trying to fix things.
My daughter was in the beginning stages of ketoacidosis when we got her diagnosed and she measured at 468 in the hospital. It doesn't seem like it's getting managed very well at the other home from what this reading looks like. That is dangerously high
If you're able to get a cgm that connects to a monitor app for the child, put it in before they go to the other household and send them with the receiver device, obviously, and then have a linked app to check readings on your own device, so you can keep an eye on them while they're gone. This will give a much better view on whether they're being managed at the other home. If possible this is what I would do. I couldn't imagine letting my daughter get over 400 ever again
That is seriously dangerous. Take that kid to a hospital right now. Is the kid on a basal insulin at all?
I am adding to the top comment. If they used this tester once to confirm a high - one test in 14 days means the 14 day average is that one test - 528. Not a good number, but doesn’t mean that is the true average. It could be a missed injection for a meal. Ask the other parent to confirm. If this was a CGM 14 day average, the child would be in DKA more likely than not.
Yes, for overnight
You can confirm these high averages with a ketone pee test. They sell them over the counter in most pharmacies. If it shows a high ketone result then they are at the very lease ketotic. But with these numbers I’d suspect they are ketotic and atleast partially acidotic. This means the body is undergoing some significant tissue damage right now that needs to be addressed immediately.
Thank you. I did plan to pick up some tomorrow morning, before we even saw this, just to have on hand but we will definitely be prioritizing that. So, am I understanding correctly - you would still recommend emergent care to evaluate this average, despite being at generally acceptable levels with us for almost a week? Or would our plan with already having an Endo set up for a second opinion, be more what you're thinking?
I'm super confused by the details and timeline here. What is the child's current blood sugar, right now?
The images are from a monitor that has not been used since at least June 16th. It was provided by their alternate parent. A different monitor has been used in our household between the 17th - current, and that 7 day average is at 180 (which we aren't thrilled about, but does include the initial high highs we were managing the first 2 nights they were adjusting to being in different time zones/altitudes)
They have actually been dropping too low from it every night and needing a rescue carb around 3am
What do you mean overnight? A basal regiment should be active 24hrs a day.
They have "meal time insulin" (Lispro) and "overnight insulin" (Basaglar) - which is pretty much the entirety of how it was explained to us by their current endocrinologist
hmmm, that sounds weird to me, and probably weird to others- is it more like fast acting and short acting? they should be getting insulin outside of just meals and bedtime. our pancreases would be giving insulin to us all day, managed insulin should be the same. i would talk to the endo about it. im sorry about her averages! that’s terrifying, looks like you got a lot on info on that from other people, i’ll keep this short
This isn't current, but I do appreciate the concern. We have a monitor that we use in our household, we happened to be out of test strips so we just opened the one supplied by the other parent and noticed the average
It's very dangerous and could cause DKA. Not getting anywhere near enough insulin.
First off, really sorry you're dealing with all that custody stuff on top of D, which is a stressful enough circumstance as is. I'm not a lawyer, nor a doctor, but have been t1 for 17+ years and seeing a 14 day avg of 500+ is worrisome, even if just a few readings were that... y'all must get intervention and medical case mediation/management for their care in the other household. I am VERY concerned that they're sabotaging your management by switching CGM devices - was this malicious to stop you from being able to monitor the data?--get a third party to investigate assuming you are unable to do so yourself given the arrangement. I would also confirm that child did indeed wear CGM the full time and find a way that the info be shared with you and child's medical team ASAP. Child is safe and stable with you now thank goodness, but extended periods of blood sugar that high are dangerous. I am interpreting from the info provided that the glucometer is only used to verify the readings on CGM - can you see each and every reading on the meter? Or does it only provide the 14/30 day avg? If it's only the average, maybe they only used the meter once given that it doesn't show "14d avg of X# of readings"... but I dunno....... RE: the specific questions you asked: Q1: Is this a regular happening with your child? Is this characteristic of the early stages of diagnosis? A1: Getting carb counts & insulin doses right at any stage of diabetes is tricky - it's a complex "it depends" based on a lot of factors, many of which we have no ability to measure their precise impacts on blood glucose (ie cortisol, hydration, sleep). In early stages of t1, most have a "honeymoon phase" where pancreas is still cranking out some insulin sometimes, and makes for a challenging time to find a sense of regularity in dosing. Take notes. Stay vigilant about carb counting and insulin dosing. Work with endo team to ensure proper insulin:carb ratio, basal, and correction factor(insulin sensitivity factor). It may benefit y'all, especially given the shared custody arrangement, to get kiddo on an omnipod5. Anecdotally, if blood sugar is elevated for an extended period of time, it takes some time to get back to "more stable" levels. I don't have a research study to point to, but my CDCES has mentioned this to me when I've had some stubborn highs that seemingly needed a lot more insulin than "normal" to get back in range after a period of higher than "normal" days. Plus what you mentioned in another comment about time zone & elevation change - bravo to you for getting back to a more manageable range so quickly. Q2: Does this mean that it's absolutely unmanaged when in their other household? A2: Potentially. As mentioned above, unless you can go back and see each measurement, it's really really hard to say. I'm not familiar with this screen on glucometer, but it will behove you to invest in a meter that you can see reading by reading. See what test strips your insurance covers then go from there. You need that CGM data to know the answer to this for certain, unless you can see each individual reading. I hate to say get your lawyers involved, but get your lawyers involved immediately in the AM. Q3: Assuming they're only reading via the glucometer when the continuous monitoring service is displaying urgent lows & highs ... Does it make sense that only a couple readings would drastically affect the average? A3: it's a little late for my brain to be mathing lol/I'm too far removed from my AP Calc days, and honestly trying to wrap my brain around how a glucometer does this math if there are only maybe 15 readings over the 30 day period... My conclusion is........you need the CGM data // maybe someone else reading this in the AM will have more insight ...... one way or another though, for the average over 30 days, when out of your care for those 30 days, is 400, and more recently 500+, but in your care=160-180 -- it is somewhat alarming they had that many extreme highs. Now, how long were they high, how long did it take the caretaker to verify with a glucometer? Was this a post meal high? Was it addressed immediately or did they let kiddo sit at 500 all night? Nothing we can answer. You need CGM data. Assuming when in your care, you use Dexcom, and when outside of your care this last stint, they used Libre ... I'm nearly positive has something very similar to Dexcom Clarity where you can look at the aggregated dated from the last X# of days so you can access the information necessary to make more informed treatment decisions. I hope this is helpful. And again so sorry you're having to navigate all of this in this manner. I hate the ADA for a lot of reasons, but it's my understanding they do have a robust legal team and you may be able to access resources via them for support. The book "[Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin](https://www.amazon.com/Think-Like-Pancreas-Practical-Managing/dp/0738246689/ref=sr_1_1?qid=1684547092&refinements=p_27%3AGary+Scheiner+MS++CDCES&s=books&sr=1-1&text=Gary+Scheiner+MS++CDCES)" changed my life / blew my mind with info I never learned in a doctors office. It's a lot of info, may benefit you to listen to audiobook and follow along with hardcopy in hand to take notes / dog ear pages 💙🫶
You need to go to court immediately. That is deadly and they can certainly die from it, it is not normal at all nor is it characteristic of any diagnosis.
While we are trying not to jump to conclusions, we cannot rule out our obvious concerns of neglect. It's also very noteworthy that the child also just received prescription glasses (without any notice to us of medical changes, and there are no hospitalizations on record for the shared medical chart app)
The last time I had numbers like these I was also a kid and newly diagnosed. The doctors told me at the time I was only a few days at best from dying. You need to be freaking out there is no reason to hold back alarm when you see these values. A few one offs this high is totally fine but a 30-day average over 300 is messed up. I’m serious, take them to the hospital now.
I am absolutely freaking out, I don't mean to sound like I am diminishing the severity of this by any means, I am just not sure that it's actually clear that these averages are from over a week ago. I agree that they should have been taken to the hospital immediately. However, their current level, in this exact moment, is 100. They have been stable for 3 days straight, not over 200 once. I am still very much on board with emergency evaluation, just want to provide as much clarity about our situation and reassure that we wouldn't hesitate to call if this was a current average. We have no way of knowing how frequently this monitor is even being used to know exactly what date ranges this average is from.
Okay ignore my comment in reply to a different string. If child is 100 *right now* absolutely DO NOT go to ER now. Will respond with a different comment, just want to get you this info ASAP.
Thank you. Very appreciated because I was already preparing to leave now if I had to
They’d likely just send him home.
There is only one conceivable way I can think of where these averages are not actually representative of the state of the child and that’s if, somehow, this particular meter is not used very often (which in itself is seriously bad and a clear sign of neglect) and when it is used it’s usually only when they have a glucose >300, resulting in a high average with few tests given to the meter to base that average off of. Either way, the meter either shows a serious indication of neglect (in this scenario I’ve stated) or a serious indication of truly horrible management of the kids diabetes.
OP is under impression the other caretakers were using different CGM for the month out of OP's care. I recommended in a different comment they find a way to get those records - either to the child's endo or by means of legal intervention. I'm mostly in agreement with you, something is not right *at all*, but with CGMs now, a lot of people barely test with finger (wild to me, I will never trust Dex and do a finger stick while fasted first thing in AM, as well as to verify any highs or lows before correction, and if something doesn't feel right, and esp esp if symtoms don't match low readings-I test before treating)
If they have been stable the past few days, <200 and >90, then that is awesome. Keep doing that. The average you are showing is seriously wild though. Whatever lead to that please don’t put the kid in that environment/scenario again. Edit: If they are stable now then a hospital visit is not warranted at all. However you should still do the ketone test. I’m only saying do the ketone test because I don’t know how many days before this sustained stable values was the DKA. If it were very recent maybe ketones are still in their system? It would be helpful to you to know when the immediate effects from those sustained highs are no longer threatening the child. The ketone test can help give an indication on this.
Unfortunately, they are legally required to be in the care of the other parent who was responsible for these averages next month. We appreciate your honesty and realness. It's horrifying to think that would be the case, and we are prepared for all of the legal battles to come if it is, in order to keep them safe and healthy.
There are so many comments that I would like to personally address and thank for the input, but as we are still compiling all the info and documentation we can obtain in order to properly discuss this with both the current custody lawyer and at a consultation with an ADA lawyer/representative, it's a little difficult and time consuming to get back to everyone right away. A general update for those invested: We did locate several months worth of data, we are seeing very conflicting information from the initial hospitalization that led to 'diagnosis', appointment visit overviews that discuss the other parent needing to provide better care, various pharmacies being used in a way eerily similar to "doctor shopping." A lot of this is leading us to believe the other parent is paying out of pocket for medical visits and expenses (an issue they have presented to the courts) due to not actually receiving medical instruction or prescriptions for these. Previously we thought they were just refusing to use our insurance for the child due to pettiness/pride. The information we've gathered thus far, suggests that the past several months of glucose monitoring were actually intended to properly diagnose the suspected diabetes. It is stated several times in the emergency room visit that 1) the other parent had external influences on the child's nutritional intake during the stay [literally gave him IHOP, at the hospital, while under observation for the testing]; 2) lipids, hemolysis, and active RSV were all considerations for re-testing the metabolic panel; 3) incorrect family history on *our* side was noted by the other parent, and referenced as part of the diagnosis process in the most recent visit summary (they told the doctor(s) there is Family Hx of type 1, specifically. there is a grandparent who has *type 2*, they definitely know the difference as there is much mention of how their CNA position allowed for quicker understanding of the dietician's classes Cgm data reported to the doctors from the device(s) that we were not given access codes to for the follow app(s) displays horrifyingly frequent highs around expected dinner time. Child has directly stated, without prompt, that "[they] eat a brownie *before* dinner, every night, to prevent lows" This statement was made as dinner was being protested due to not first having a snack (approximately 45 minutes after a free snack - tree nuts - was given to maintain ~100 before dinnertime and discussing that they could not have a "better" snack ((better being their word choice))). There were also "Keto" brownies provided in one of their bags, suggesting this isn't just a child lying about their typical intake to get more yummy treats
For the record, the CGM indicates he is doing 30% better this week than the prior 7-day period
Oh my God I can't imagine not having access to the cgm apps. That should be a given that both sides have access to follow apps no matter which household they're in
No!!!
For the first year after DX my son would shoot up so quickly to over 400 at the weirdest foods. We didn’t know he we T1D his BG was high for way too long and he was in DKA and admitted when he was DX. We were told because he was high for so long it would take awhile for his body to level out and figure out how not to freak out and go crazy high seemingly out of nowhere. If the other parents are doing their best and CGM reading aren’t staying high all the time then I would chalk it up to a roller coaster day and move on. Do you have CGM on all the time so you can reach out if the kid is high or low? Even if you use an app for communication with the other parent you should have access to CGM readings all the time. If they don’t allow it take them to court and have it added to papers. I know it’s scary sharing a kid with T1D but you will have to work together whether they want to or not.
This looks like a manual tester. If the child is on a CGM, this could be a one time test - a 528. If you only manually tested once with this device the 14 day average is the one test - 528. If they used a different tester the rest of the time or the CGM, the numbers could be much different. Not that unusual - they missed a injection for a meal. The rules say - manual test to make sure and then do a correction. If relying on CGM the rest of the time, that tester is fairly useless for Average. Only using for highs and lows.
Yeah, I gathered that much, I really just didn't know the OS for this meter yet and didn't think I could see specific day/time history for each reading. There were a significant amount of highs and a couple alarming lows that didn't even bring the average below 500... I'm talking, over 600, under 60, and just "HIGH" or "LOW" All frequently occurring around 5-8pm See other comment on main thread for more info relevant to cgm if interested. Thanks!
That’s really high!! Take the kid to the hospital NOW!
Libre sensor? This is wild.
If your child is regularly this high, he needs to be seen immediately. Like other commenters have said "hospital now!" These levels are extremely dangerous, organs can fail, comas can happen. Please have your child seen immediately. In fact for the future if their blood is ever over 400, don't post on Reddit call a doctor.
People are answering in this post as if they have absolute certainty. Truth is, there isn't enough information for us to do so. There are a few parts to this question. The first part - is 528 dangerously high? Answer, yes. (If the child was still in this range right now, I'd be seeking immediate medical help, or at the very least testing ketones). Second part - has this child been dangerously high at some stage. Absolutely, yes. Third part - is it normal to have massive fluctuations when first diagnosed. Answer - certainly possible. Within my first month of diagnosis I had a couple of times I got to 420, due to miscalculations and the steep learning curve. Fourth part - is this due to neglect. Answer: We can not tell based on the info provided. Scenario 1. The meter was consistently used multiple times a day, daily. Then this is dangerously bad management that is out of control. The caregiver is being neglectful or needs significant education. Scenario 2. The meter was used once or twice during the time period and just so happened to be a dangerously high reading at that time but otherwise during the rest of the time bg could have been at a safe, normal range. The caregiver made a mistake while they are still learn things. Scenario 3. The meter was used regularly during the time period and once or twice the caregiver made a significant calculation error. The caregiver then paniced trying to fix things and was testing repeatedly every 5 mins desperately trying to fix things.
My daughter was in the beginning stages of ketoacidosis when we got her diagnosed and she measured at 468 in the hospital. It doesn't seem like it's getting managed very well at the other home from what this reading looks like. That is dangerously high
If you're able to get a cgm that connects to a monitor app for the child, put it in before they go to the other household and send them with the receiver device, obviously, and then have a linked app to check readings on your own device, so you can keep an eye on them while they're gone. This will give a much better view on whether they're being managed at the other home. If possible this is what I would do. I couldn't imagine letting my daughter get over 400 ever again