Irritated and exhausted, just need to vent :)

I have been silently stalking this forum for a few months now, just taking in all the knowledge and experience that it has to offer but yesterday something happened that has me wanting to vent to people who might understand. Sorry about how long this is, it is a few months of pent-up frustration :).

Background: My 8-year-old stepdaughter was dx T1d at the end of January 2022. Her target range is set to be between 80 - 130 mg/dl. Her carb count at our house is currently 1/6 at breakfast due to what we think is possibly the Dawn Phenomenon and then lunch and dinner have been 1/7. At our house we try to keep her meals within the daily 130g so typically 0-20g at breakfast, 40-50g at lunch and dinner. My husband and I both said we want to try to keep her below 250 mg/dl, so if she begins going close to that and we have recently given her insulin for a meal, we have her drink water or we go for a walk or something to get her numbers to stabilize and go back down. My stepdaughter learned to ride her bike this last weekend, so we have been doing a lot of riding. We are currently in the process of figuring out how to adjust our carbs/insulin to account for that, so she doesn’t dip low. We feel we have a pretty good handle on her diabetes treatment and if we had her all the time that we could possibly reach the 70% in range that the dr wants. Here is the frustrating side. At her mom’s house the carbs are all over the place, we have received phone calls asking about how to calculate for a dinner that was 130g, it was some meal from Sonic with a slush. Despite our immediate red flag reaction, we help her figure out the carb/insulin ratio from the information we are given and pray that it is correct. A few weeks ago, her mom got upset at her post-diagnosed dr’s office because she needed to reschedule her follow-up for this month, and they were booked so they said it would be July before they could get her in. So, she asked my husband about it, and he suggested that if she wanted to change drs, to do some research and try some out before committing. So yesterday was an appointment with a new dr. My husband went to the appointment and what he said has us irritated. The dr asked them what they do to treat a high, I think it was regarding a specific high as he was reviewing her charts. My husband said, at our house we have her drink water. Her mom already thinks it doesn’t do anything and that Zero sugar Propel or Gatorade are better because Facebook said so. This dr told him that drinking water does nothing. My husband quickly said that he disagrees because he knows for a fact that water will help bring her numbers down. So, the dr placated him and said well I guess from a dilution aspect. Well duh. The dr said insulin is his recommendation for treating highs. The part of the information that was left out was that when the high occurred she had already been given insulin and was still rising. The dr didn’t ask much about foods out side of breakfast and said that any carb amount can be put into the pump and the pump will take care of the rest. She doesn’t have a pump yet, so to me that was him pushing for them to get a pump instead of learning how to eat correctly. He also so said he wasn’t concerned about hypos and that you should always correct 100/100. I’m hoping he is only saying that about the brief dips she has and not about hypos in general. I’ve read enough and have had experience with drs enough to know that more than likely his comments are just bad bedside manner and if he would have had full context and accurate information that he might would have stated his responses differently. Of course, her mom likes him because he essentially justified her arguments that water doesn’t do anything and that the insulin ratio are off not the kind of foods, she is feeding her. My stepdaughter looked at her dad after the dr mentioned the water and asked “then why do you have me drink water?” which I know made him furious at the dr. So, this morning, we feel that the small gain we had made at trying to get her mom to keep her numbers lower just got obliterated and we are back at the starting line. I’m not looking for medical advice, I just needed to get this off my chest and reset my emotional meter so that we can try to deal with what lies ahead with a clear mind. I don’t know if they will be switching to that dr for treatment or if she plans to keep checking drs or what, but this stepmom is seeing red flags and wants to have a few words with that dr ;).

H gave a brochure for the Camp Enders here in Oklahoma that cost $680 for her to go for a week. Although it’s a lot of money and will fall on our week with her I think it might be a good idea for my stepdaughter to be around other kids with T1d, and hopefully that will help with her fears of the changing of sensors. That one reason we haven’t looked hard at a pump because it is already a struggle just to change the Dexcom every 10 days.

Thank you for listening to this rant. My husband and I are just mentally exhausted.

Hi @SweetBlood_Sky . You’re doing a great job being an advocate for your stepdaughter. Finding a good doctor can be challenging and it sounds like her initial one was good. A good doctor doesn’t always tell us what we want to hear, but what we need to. I know I’m preaching to the choir.
I was diagnosed in 1963 so have a little bit of experience to share. Diabetes camp was a lot of fun way back when, and I think my parents were grateful to have a break while I was in the good hands of the counsekors and staff at Camp Glyndon.
I’ve found that no amount of insulin will bring me down from 300 (that’s my number - it may not be your stepdaughter’s) if I don’t drink water. However any sugar free fluid will do the trick.
I like to recommend the book Think Like A Pancreas, by Gary Scheiner. He has Type1 and is a dietitian so he has a unique, personal perspective to share. Maybe someday her mom will read it too. Diabetes does not have to be limiting but it’s important - even critical - to know how to manage that freedom. Hopefully the way your stepdaughter feels when she’s with you and her dad will give her incentive to keep up good practices at her mom’s.
As for pumps: they’re wonderful, but many people do just fine on injections. If someone is not motivated to make the change; and they’re doing well on shots and there’s not an important reason to switch, they should wait until they’re ready and shouldn’t feel they have to do it.
Keep up the good work, and hang in there.

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Thank you @wadawabbit. I actually ordered and have started reading Think Like A Pancreas after seeing it recommended on this forum. I’m a slow reader and it’s chaotic at home most of the time so I haven’t got very far but it has been very good so far. Every time I get a chance to read a section I go to my husband and say “look this book justifies what we have been saying, lol”. I understand, water isn’t the cure all but to tell a parent, with the child sitting there, that it does nothing in my opinion is not a good practice for a pediatric endocrinologist because you have parents like my stepdaughter’s mom who only hear the water doesn’t work part and doesn’t take the time to see that it does and logically it should just from the perspective that it is flushing out all the gunk in her system. We all need water. I think a pump will be good, but only once she is fully committed and ready. I appreciate the encouraging words.

@SweetBlood_Sky Hello Jennifer, and a warm welcome here to a first-time contributor to the JDRF TypeOneNation Forum! Rather than calling yourself a “stalker”, I would rather say you are a very concerned mom [sounds to me as if you are her better guide] who visits here to read, study and learn about T1. Yesterday, you were one of 6,318 site users who visited to read several postings without logging on with your name.

I am not a licensed medical advisor so what I post is based on my study of diabetes and management and from bits-n-pieces I’ve picked up while living with my diabetes in to seven decades. I’ll begin by saying that I think you are doing a wonderful job helping your [step] daughter learn how to manage her diabetes, helping her to build a firm foundation for her life. Your thoughts about water hydration are right on; proper hydration is an absolute necessity and it helps avoid or eliminate both hyper [high] and hypo [low] glycemic events. Walking and similar aerobic activities also are effective, but do avoid strenuous exercising when high as this could lead to a possible ketoacidosis condition. IMO opinion, bringing down a high glucose with a correction bolus of rapid or fast acting insulin should be done very carefully and not usually within three hours of the meal bolus - unless you have done a recalculation and noticed a miscalculation in the meal bolus such as undercounting carbs.

Other thoughts: I agree with your thinking about a pump. Too many people, and this includes doctors, think a pump is a cure-all for effective diabetes management; it is easy to see from reading posts on this forum of additional “troubles” brought on by improper pump usage; a CGM [continuous glucose monitor] on the other hand may be the very best diabetes management tool of all time.
You say "Her target range is set to be between 80 - 130 mg/dl: I presume this is before meal target. Keep in mind that the recommended range for adults [you included] is 70 - 180 mg/dl over the course of time. It is expected that, especially with small body size children that BGL will rise significantly even following a healthy meal.
“Doctor shopping”, don’t get me started - suppose we can always find a board-certified doctor who will fit our preconceived management thoughts. I don’t mean that one should never change doctors, but always go with the best.

I hope that today’s “vent” did you some good - you are always welcome here. You may also find people with whom you can relate at a JDRF Chapter; under the “Events” tab at the top of this page select “JDRF Near You” and enter your zip-code.
Best wishes to you and your husband!

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You’re very welcome. A PS - Dexcom’s applicator is huge, which can be scary. She’ll have to find our for herself but FWIW I don’t notice my sensor going in. I find insertion quick and painless, although of course a child might feel differently.
There’s another CGM called Freestyle Libre which I use as a backup. It doesn’t have all the bells and whistles of Dexcom since it doesn’t work with a pump, but you don’t need that, at least right now. The applicator is much smaller and might be less intimidating for her so she might be more willing to try that one, at least to get started. IMO if you’re not linking a CGM to your pump, Freestyle is just as good as Dexcom and might be good for her to start with. Again, that’s just an opinion.
A tip on doctor visits - I schedule my next one as I’m checking out so I can get the date I want.

I’m baaack😊. Forum members know my thoughts come in bits and pieces so here’s a new one: school is nearly over but parents need to develop a 504 plan for the school so they will know how to help manage a child’s diabetes care. I’m not a parent so others may explain the process better but in a nutshell, parents and doctors provide dosing instructions for meals and what to do in the event of high or low numbers. The plan can and should allow for snacks and bathroom breaks that fall outside of the regular schedule. That’s a very general expansion and I believe each state has its own format to use as a guide - there may be some resources here on JDRF to point you in the right direction.
Hopefully those guidelines for school will serve well at her mom’s house - and when she spends time away with friends or on trips. Time will tell if they do not - or if they’re not being followed. Hopefully her mom will climb out of denial soon and will learn to help her daughter learn to have a healthy life with diabetes.
Regarding liquids - first of all I should state that I’m not a medical professional and am just sharing my leanings, so please do your own research but: I heard about a man who was very health conscious, physically fit - an avid tennis player who played several days a week. He was surprised when he started feeling sick and made an appointment with his doctor. He had come straight from a tennis game and had a water bottle with him, but not the average 20-some-ounce size most people carry - his was a gallon, or choose to it. Long story short, he drank frequently to stay hydrated during his games, but the water was diluting the electrolytes and sodium out of his system, which was making him sick. He was drinking an excessive amount of water over a short amount of time. I find that one or two, 12oz glasses of water helps start the process of lowering my numbers and I haven’t noticed any ill effects. I don’t know just how much water it takes to cause that imbalance, and you may want to check with her doctor for guidance, but I personally have found that I don’t have to drink too much more than normal. Apparently athletes choose Gatorade for hydration during endurance events, but the key for washing out ketones is that it be sugar free.

Welcome, Jennifer.

I’m sorry it’s been so frustrating.

I’m hoping your use of the term “stalking” is tongue in cheek, which I can certainly appreciate. But “lurking” is the term I’m familiar with across multiple platforms. You’re not following us around. You’re just sitting quietly in the corner taking it all in. And we’re talking and sharing so that people can learn, even the ones who aren’t ready to talk yet.

Water has a lot of mythology around it. There’s no evidence that people need the proverbial 8 glasses a day, for example. But it is important to take in enough liquids for your body. Which will vary depending on the size of your body, how active you are, how much you’re sweating, what the local climate is like, and so many other factors.

The doctor is right in that adding more water isn’t going to dilute your blood or allow the sugar to be processed into your cells. But he should very well know that diabetics with a high blood sugar pee a lot (and get very thirsty) for a reason. He should certainly know there’s a reason for urinalysis strips that detect the amount of sugar in your urine. (Before blood sugar meters, it was the best available method to determine your body’s glucose levels.) It’s how diabetes was diagnosed for centuries. Excess sugar in the blood is filtered out by the kidneys and excreted through urine. That is, drinking more water when you have a high blood sugar allows your body to flush some of the extra out of your system by peeing it out.

Gatorade was developed by a sports medicine doctor working for the Florida Gators NFL team. It’s a combination of water, sugar, and electrolytes designed to replace what’s lost from exercise and sweat. It’s actually more effective hydration than pure water. That is, if the problem is that you’re dehydrated, particularly from sweating too much.

But you’ll note something important in that ingredient list. Gatorade has sugar. If the problem is that you’ve already got too much sugar in your system, drinking more sugar isn’t going to help. It’ll make things worse. (Related: Shortly before I was diagnosed, I found myself frequently getting excessively thirsty. That’s precisely how I was diagnosed, because Mom knew the significance of that from having a diabetic father. I found myself really thirsty, and I could not stand the taste of plain water. So I grabbed soda or juice. And ended up throwing up almost immediately. My body knew I had too much sugar already, and was trying to save me from making things worse by getting rid of the new sugar before it had a chance to make its way out of my stomach and into my blood stream.)

Zero sugar Gatorade… That should be about the same as water. The extra electrolytes don’t matter so much if she hasn’t lost them from sweating them out. They won’t hurt. But they won’t do anything helpful if the goal is just to flush sugar out.

If you’re running high, there are a few things that will help:

  1. Insulin. It’s the one thing that allows sugar to pass from the blood into the cells. It may take a while to kick in, but it’s the best thing for the job.
  2. Water or other sugar-free liquid. It will help your body to flush out some of the excess.
  3. Exercise. It will burn off some excess calories and it will get your blood flowing and metabolism moving faster. The effects can last for several hours.
  4. Time. All of the above act gradually. You’re not going to bring your BG value down right away. In fact, if you did, the sudden change would have unpleasant side effects, such as wooziness.

It’s okay to run high for a while now and again. Keep it under control as best you can, but don’t panic over a high BG. The damage it does is very gradual, and generally reversible.

It’s also okay to take a while to learn your stepdaughter’s individual body needs. Which will change as time goes on. She’ll need more insulin as her pancreas’s remaining production capacity is destroyed and her body develops some resistance to the artificial insulin and as she grows and from many other changes.

But if this doctor doesn’t know that water will help with a high blood sugar… I’m with you. You need a different doctor. Because that is some very basic well-established longstanding diabetic medical science right there. I mean, he’s right that water alone won’t do it. You need insulin. And there’s nothing wrong with taking extra insulin as long as you don’t overdose. But he should know that water won’t dilute the blood but will help flush it. And he should know that hypos can cause permanent and cumulative brain damage.

As for insulin/carb ratios: A ratio is made up of two numbers. Both numbers matter. Both the carbs and the insulin. And, while carbs have been dumbed down over the last few decades, the type of carbs matter. A lot. 15 grams of pure sugar will have a very different effect than 15 grams of carbs from complex carbs. Half a cup of OJ and half a cup of pasta might have approximately the same number of total carbs, but the former will spike your sugar in one quick rush while the latter will digest gradually over the course of several hours. The OJ is great if you’re hypo. But the pasta is much better if you’re looking for a more sustainable level that your insulin injection (which also takes effect gradually and lasts for hours) can keep up with.

I’m a litlte scatterbrained from sleep debt, so I hope this makes sense and that something in there helps. I know you said you weren’t looking for medical advice. But sometimes it helps to review information and have it affirmed.

I knew posting on here would be helpful :). @Dennis I will research ketoacidosis condition, that is very helpful information that I was not aware of. Yes the target rate I’m referring to is her pre-meal numbers that her post dx dr suggested for her. We have read that the recommended is the 70-180 mg/dl which I think we could do fairly consistently if she was with us all the time. My husband has caught onto the affects of her meal much better than I have, so I have tried to not panic if her numbers are still elevated until closer to the 4 hour mark of her active insulin. @wadawabbit reply away, I’m like a sponge with this stuff and want to learn from experience as well as published books. I understand this is all trial and error because it is different for everyone but it does help me to relax and not stress so much. She isn’t scared so much of the size of the applicator, I think it is the click of the button that she fears. Once it’s done she will say it wasn’t that bad. We have started trying to use some lidocaine the dr prescribed to see if that helps any but until we can get the fear out of her head nothing else will help. A dr’s appointment was schedule for June 13th but her mom was going to be away for business and didn’t want to miss the appointment so that is why she wanted to change it and caused the issue with finding a new dr. @WearsHats thank you for your incites into the water. We do have some soda made with Zevia that we give her some times at dinner and she does have some Propel and Gatorade mixes for her water that don’t have the maltodextrin but if she is high we are just saying that plain ole water is better to get her to begin to come back down instead of something with the artificial sweetener. The part that was left out of the conversation with the dr was that my stepdaughter was 457 mg/dl, had already had meal insulin so when we got the call from her mom in a panic thinking she needed to head to the ER, we and the post-dx dr said to drink water and give the insulin and water time to work. At her mom’s her charts look like a rollercoaster with lows dipping in the 40’s to just HIGH (which is typically when she is over 400 I think). Her mom has heard “let her eat whatever, let her be a kid” so she does just that. What she failed to hear is the keep her overall carb count to 130 mg a day. I truly appreciate all of this experience and wisdom that you all have provided me and I have new topics to research and feel better. Yes, stalking was probably the wrong term to use, I’m more of a silent observer just soaking it all in. My hope is that her mom sees how our numbers are compared to hers, especially this month because we have them for two weeks and then she will have the kids for two weeks before getting back on our regular every other week schedule. Things will get better, we will learn how her body works and hopefully my stepdaughter will begin to notice the difference in how she feels and make the choices for herself. I thank you all from the bottom of my heart for being the light I needed to take a deep breath and relax.

Glad we could help.

In my experience, it doesn’t matter what’s in the water as long as it isn’t sugar. Artificial sweetener isn’t going to make a significant difference. If she doesn’t mind water, that’s fine. But if she has an easier time with something more flavorful, it won’t hurt. Up to you. (Personally, I have one of those home carbonation machines and then I buy a bunch of crazy syrups for it from various companies, all sugar and caffeine free. Works great for me. Makes it much easier to drink. But I’m weird in that I really can’t stand the taste of plain water and generally don’t like to drink anything.)

I still think 70 is a shade too low. I was taught to stay above 80, and that’s about when I start feeling symptoms. (If you’re feeling symptoms, it means something is wrong. Damage is being done.) But I have no standing to argue the point. However…

Holy hell. That’s approaching coma territory in both directions. If she’s down at 40, her brain cells are being starved of an essential nutrient. It’s not as bad as oxygen deprivation, but the same idea. That could be doing permanent damage to her developing brain. I’ve been down around 20 a couple of times over the decades and not passed out from it, but I was told in no uncertain terms by a hospital nurse who specializes in treating and training diabetics that you are absolutely in danger of slipping into a coma at that point. The exact point will vary, but you want to stay well away from it.

By the same token, I’ve been up past 400 a few times, after wildly misjudging a meal or having a problem with delivery from my insulin pump or some such. That’s not as dangerous as being low, but it is dangerous and can cause serious harm. And it’s also approaching the point where patients can start to slip into a diabetic coma. I’ve never passed out from being too high, but the day I was diagnosed my hospital roommate was in that exact state. He was a 12 year old kid who refused to treat his diabetes because he didn’t want to acknowledge the reality of it. The nurse said he’d likely wake up in a day or two and be okay this time. But it wasn’t the first time he’d been there for that exact reason, and if he didn’t learn his lesson soon he was going to be in serious danger of all sorts of complications.

Allowing her to “just be a kid” is nice in theory. But allowing her to dip down that low and skyrocket up that high on a regular basis? That’s playing with her life. It’s child endangerment, plain and simple. And if it keeps up, it will have long-term health effects, no question.

That’s fine. Diction isn’t that important. Just wanted to make sure you weren’t being needlessly self-derogatory. There’s nothing wrong with hanging back and reading until you have something to say or are comfortable speaking up.

Anyway… Diabetes is a long haul, with a lot of learning along the way. But you’ll get the hang of it. Took us a couple of years before we relaxed and learned where it was okay to make allowances and where the danger points were and how my body reacted to different foods and so on. It gets easier with time and experience. But I really hope her mom can learn better, and soon.

I mean, my niece, like many kids of her generation in this country, has a serious nut allergy. No one tells her to “just be a kid” and eat PB&J sandwiches. We find what she can eat safely, and then let her be happy with all the things she can do that don’t endanger her health.

My daughter was diagnosed at age 10 (now 16) so we have some experience that could be helpful. Sounds like you are doing an amazing job. It’s a big change and a steep learning curve for sure, but it does get easier over time.

First, I am surprised by her narrow target range and her carb limits. Are the doctors you are seeing pediatric endocrinologists? These seem more like guidelines for Type 2. We target 70-150 now but it was more like 70-180 for the first several years. We also do not do carb limits at all. limits are really not necessary for T1D, especially for kids. Higher carb meals can be a little more challenging to dose for, but you just need to figure out over time how to dose for them (pre-dosing 15 min or so before eating definitely helps). My daughter eats what she wants including pizza, burgers, bubble tea etc and just doses accordingly. Even with some forgotten doses and undersoainf, she is still able to keep at A1C around 6.5. Ultimately they should eat healthy just like we all should, but should not need a special diet.

The lows when at her mothers are alarming and I would focus on trying to get her to fix that firat. Anything below 70 need to be treated immediately. Over 400 is not great, but is not an immediate emergency. If she is using long acting insulin, that will prevent build up of ketones, so you should not have to worry about ketoacidosis normally (except when sick when that can be an issue). We generally try to keep a BG above 80. Upper end varies but I do t get too excited h Tim her BG gets close to 300. Highs affect everyone differently. My daughter doesn’t really feel them, but I know adults that say they feel like they are drunk when their BG is over 259 or 300.

I highly recommend camp. My daughter has been to several and loves them. It’s great for them to be around other kids with T1D and my daughter keeps in touch with her camp friends throughout the year .it’s great to have friends that “get it” when it comes to T1D.

One of the best pieces of advice we got from the doctor when she was first diagnosed is that she should continue to do everything she did before she had T1D. We apply that to activities as well as foods. It’s important for them to be able to be kids and do what their friends do. I admit I get frustrated sometimes when she forgets to dose when out with friends and ends up with really high BGs, but at the end of the day, her management is pretty good. I think if you can avoid the really low lows, you can compromise a bit on the higher values.

A pump will help, especially now with the closed loop that doses off the CGM values, and can also help avoid lows. My daughter was adamantly against the pump initially until she talked to other T1Ds that had one and she was able to try one at camp. She started on the pump about 10 months after diagnosis and has not looked back. We recently went back on shots for a few weeks while she was in lifeguard training, which reminded us how much easier the pump is.

Good luck! Sounds like you are all adjusting well. It’s not easy, but the T1D community is amazing and you’ll find lots of support and experience here.

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This is where it pays to be a little deceptive and sneaky (sorry mom) and it would only work a couple of times but hopefully that would do the trick: as you apply the applicator tell her you’re going to press the button on the counter of three - but press it before that. If she associates the click with the sensor actually going in, maybe the element of surprise will remind her of what she already knows - that it’s not so bad
I hope that makes sense.

Another thing that hasn’t
been mentioned, and is often missed, is that there is ALWAYS a delay when using a CGM. Thing is that every CGM doesn’t read BLOD glucose, it reads LYMPH glucose. It is reading the generally available fluid that works outside the bloodstream to make it easier and safer than trying to ALWAYS hit a blood vessel, and blood vessels aren’t good about being pierced for days on end (as in infections). Besides lymphatic fluid isn’t pumped like blood, it just seeps through the entire body aided by body movement.
SO the secret number is 20, since it takes about 20 minutes for the food to be processed in the stomach to START affecting bg levels, but then it takes another 20 minutes for the changed bg level (whether up or down) to work through the lymph system to affect the CGM reading.
So when levels are changing rapidly, or don’t seem to be changing as expected, do a finger stick glucose meter test to verify. That especially applies when levels are dropping fast.
Seems I’ve learned a few things in my 66 years experience with T1d. BTW, some mention was made about going to a diabetic camp, but that wasn’t available in my area when young, but I went to normal camp which worked reasonably well with no big problrmd, but I was lucky at that.

Hi. Bob Osthues, T1D 66 yrs so far. An aside, you mentioned FreeStyle Libre, is that actually a CGM? I point to the word “monitor” which is a continuous function, with the Libre, I thought you had to grab your phone and swipe it past the sensor/transmitter??? To me continuous and monitor in the same phrase is a redundancy, maybe I forgot my english lessons?

Libre 2 uses a push Bluetooth signal to alarm without scanning. So yes, given the criteria , libre 2 is a CGM. The original Libre you need to scan but can display a few hours of data so if you scan the minimum amounts of time you will get a trace of BGL versus time for the full 24 hours. This falls short because if you don’t scan it can’t give you low/high BGL alarms. There are 3rd party Devices that scan the original Libre continuously, pushing data to an app on your phone, making it an ad-hoc CGM. Cheers.

OK, thanks, I use deacon, have issues with sensor life on G6, so, might try Libre

I have had MANY diabetic doctors and none have said water will bring down a high. It will help if you are dehydrated and that is also likely happening since we urinate a ton when high. Get an endocrinologist to give you insulin sensativity values so your step daughter does not have to consult with you. I became a diabetic at 12 in 1972. I am now 66 and have zero diabetic complications, I do use a pump now also and it changes your life like you are not a diabetic. My parents never gave me anything. I was taught while in the hospital exactly what do to in every situation. Your daughter, after a bit, will be an expert for what works with her. She needs to own her condition. Think about how kids think. The last thing they want to do it ask parents. In this case, she knows her body more than you do. The thing with highs is it takes a ton longer to come down from a high as opposed to treating a low. Coming down from 300 willl take many many hours. Do not over dose with insulin or then you will go low.

Yes, both of the Drs so far have been Pediatric Endocrinologist. She’s not on a special diet, they have said she can eat anything as long as it’s dosed correctly. My husband and I have always fixed meals at home, even pre dx. We do try to make sure she has a balanced meal that falls within her carb ratio, so last night we had pigs in a blanket with mac and cheese, green beans and she gets a desert that depends on how high her numbers are at the time. What I understand they eat out more at her mom’s, like I-Hop on Saturdays, which I would be perfectly okay with if her numbers were controlled better. I asked my husband last night why they said 130 mg/day and he said it was recommended daily carb amount for a healthy 8 year old. She does get some 0 carb or low carb snacks in there that don’t count towards her overall numbers. So far she hasn’t really mentioned if she feels different with her highs or lows, other than some headaches. I’m not sure what she tells her mom during those weeks. We are looking into the camp that starts I believe next month here, her mom is gone on a work trip so they will work all that out when she gets back later this week. We are fully pro-pump, we just want her to be at a point where she wants it too. I do not believe that forcing more on her at this point is beneficial, we just need to figure out the dosing to get her closer to regulated. It has only been 5 months since she was dx so hopefully the next 5 will see some improvements in all areas of this journey. @wadawabbit the sensor change is so exhausting, trying to keep her distracted is tough. She wants to have her hand touching her dad’s so she can feel when he’s going to push the button. She watches him instead of whatever show or thing we have to distract her. It seem seems to be getting worse than better but again, it’s only been 5 months so hopefully this will get batter in another 5 months. She does fine with removing it. She does ask to have a small break between putting the new one on. I think the reality of this being a lifetime situation hasn’t fully registered with her 8 year old mind. @tedquick I think I might have gave the wrong impression with saying her numbers go high then low, it doesn’t happen in rapid spikes, it is at least a gradual thing but still really high numbers and really low numbers. Yes we are aware that the CGM reads the fluid and not the blood, I’m having to train my brain to pace it’s response and to not look at her receiver as much. This also helps her to not look at it constantly, giving her the feel of being a normal kiddo. My husband and I have recently agreed to not talk about her diabetes around her except for what pertains to meals or just casual checking. We want to keep our conversations about how to manage and what we have learned or what is going on at her mom to our alone time. She only needs to focus on being a kid for now, there will be a time when she gets more involved and hopefully by then we will have most of these unknowns worked out so we can teach her management better. This is a learning experience for all of us. @808IUFan we were not asking if water will bring down a high, he asked what we did to treat a high and we mentioned having her drink water, this was recommended by her post dx dr and we have seen her numbers stop rising and plateau or start to come down when she does. For the dr to just out and say that water does nothing and act like she shouldn’t have water is in our opinion ridiculous because everyone needs to drink water. I used to never drink water, I hate the taste of it, but as soon as I did I noticed changes to my body. I felt better, I lost weight, my skin wasn’t as dry etc. Our bodies need water. As I mentioned previously, what was left out of that conversation with that dr was that when she was high, she had just received insulin so more was not an option for a few hours. She does not have a pump, which I think is what he was pushing for. I’m not a dr so I will not completely dismiss what one says, however I do know that sometimes they treat based of off what works for other patients and not all patients are the same. Now, I have read many places that there are drs and nutritionist that are more relaxed than others on the treatments, I feel this is mostly due to technology and the pump. Although I feel the pump is something we will need, I want to know how to treat her without it so I’m not caught in a panic if something happens. Just saying ah, don’t worry about the carbs just put something in the pump and it will take care of it, is not a good practice in my opinion, but again I’m not a dr and I have not fully researched pumps yet. [quote=“808IUFan, post:16, topic:71972”]
give you insulin sensativity values so your step daughter does not have to consult with you [/quote]. I want her to consult me, I want her to ask questions and know she has a support system behind her. She currently has no interest in managing her diabetes, she’s 8, that’s okay she will and at that time I want to have a good grasp of how to teach her. I will definitely look into the insulin sensitivity option. Not to be rude, but times have changed, even from when I was young. Kids are so much more dependent on parents then even I used to be. If this would have been me, I would have wanted to learn how to do this so I could go play, go to sleepovers etc, I was an active outside kind of kid. She has issues entertaining herself, if she doesn’t have me, or friends to play with, she just sits and plays games on her tablet. That’s why we go for walks, I taught her to ride a bike and when she did her dad and I got bikes for us to go for rides with her. It’s truly a different time then even 44 years ago. I love to hear how many of you did this journey without even really a dx or treatment plan. I never put it all together until this, as a kid my grandpa would need shots, I never really knew why but now I do. The human body is a mystery and how humans can overcome and adapt with just the basic ideas and knowledge and be healthy, thriving adults is awesome to me. A kid who grew up in a small town in the 80’s and 90’s, we didn’t just run to McDonalds or Ihop, mom fixed a home cooked meal and you ate whatever was on your plate, then you played outside until the street lights came on.

I truly appreciate all the feedback and have a lot to research and get familiar with. Sorry it’s taken a bit to respond, it’s easier on a computer and my evenings and weekends are busy when we have the kids.

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Keep on doing the excellent work. I took shots for about 30 years before getting a pump, and as much as I appreciate it I do believe people should know how to “go old school” in case the need arises.
I hope she enjoys camp - even aside from diabetes. She may start to take more interest in her own diabetes and the technology once she makes some friends. Hopefully as she starts looking to be more independent she will take more interest in her own care. You’re doing a great job - she’s blessed to have you as her stepmom!

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Yes. This. I was diabetic for a quarter century before I switched over. I waited for pump technology to do what I needed, and I didn’t see a point to having one before that.

Switching has been great for me. But I did fine without one, and I very much appreciate that it was my choice if and when to make that switch.

Pumps come with drawbacks, too. For one thing, you have to deal with the tubing getting caught, getting in your way, being visible, etc. It also makes airport security more of a hassle. Most pumps say you can’t go through a body scanner with one, and Dexcom says you have to remove the sensor and transmitter or else there’s a chance the radiation could mess things up. So I have to opt out and get a patdown instead, every time.

The major issue, though, is that your life depends on the pump working. If anything goes wrong with it, you’re up a creek. Your blood sugar will be sky high in a matter of hours. It could take days to get a replacement. So it’s very important to know how to manage your diabetes with injections and to have injectable insulin handy at all times.

It’s also just important to understand how diabetes works. The pump is great, but there are times when you need to be smarter than it. Because you’re in a position to know things that it doesn’t. Just like you said:

That’s exactly right, and any good endo or nurse will tell you the same. It’s fundamental. It can be a lot for a kid, but whatever adult is with her should know. And she should learn for herself as she’s able.

Exactly. I used to go to IHOP with my mom often enough that we had a regular waitress who knew our orders and would chat with us and became a friend. Mom cooked most nights and always made sure we had a balanced meal, even before I became diabetic, but a weekly lunch at IHOP was a treat. And there is nothing wrong with that. Pancakes are complex carbs. You can have some sugar. If you ask for it, they have some pretty good sugar-free syrup. You can eat what you want, as long as you know what you’re doing and don’t overindulge. Which is a good lesson for anyone, really, diabetic or not.

As for the sensor change: She’ll get used to it in time, I’m sure. But the more she gets used to worrying about it and hating it, the more that will become an engrained mental block. I came out of the hospital when I was first diagnosed able to give myself shots. And then I got out of the habit and it got scary and my parents had to do it for me for a couple of years before I forced myself to start doing it again. Once I did, I never had trouble again. I was in my teens at that point, which is much different than being 8. It leaves you with a fine line to walk. Giving her room to work through it while also not reinforcing the fear.

A reward might help. A sticker or a treat or points towards earning some little toy or something. Knowing there’s a good thing coming when it’s done can help make it less scary. A bit of joy to counteract the fear and anxiety.

Yes. I’ve been thinking the same this whole thread. It sounds like you’re doing an excellent job and she’s lucky to have you and your husband to guide, support, and care for her.

Sometimes what you believe conflicts with what other people know to be true. Most doctors have a better understanding of how the human body works in general and more experience seeing how therapies work with multiple people, than the average parent does from observing their child.

Drinking water has a lowering effect on high blood sugar for two reasons. Either the person is dehydrated and it reestablishes the blood volume or it assists the kidneys in removing some sugar in urine. Exercise is predictable as a remedial measure. Water isn’t because adding liquid to digestive gut may assist in digestion and absorption of carbohydrates that are mixed with fat and protein .

If you’re already looking for a new doctor the best for your situation is a endocrinologist that works closely with a pediatrician. You might want to contact one of the clinics that specializes in treating diabetes like Joslin, seeing if they have a program where you can have your child observed and you observe the treatment for more than 15 minutes at a time and you can talk with educators and specialists that are primarily working with persons who have diabetes.

A problem that you can address is the temporary caregiver who is jeopardizing your daughter’s health by ignoring MEDICAL directions. There’s no significant difference between a mother who gives a diabetic child a large amount of carbohydrates and a stranger who offers a non diabetic child whiskey.

Neither child is able to metabolize what that person is feeding them without immediate risk to health.

Indulging a child or forcing on a child things that are deleterious to that childs immediate health is something that no parent should tolerate. Neither is an untrained, unskilled, ignorant, unsupervised caregiver.

Insulin corrections by an unskilled caregiver is one of the most dangerous thing that can happen. Carb counting is unreliable, dose calculation inept. It doesn’t take much with the size of a child’s body to give them too much insulin, put them in hypoglycemic shock. and need to call for professional emergency care. Give them significantly less insulin than they need and the resultant high blood sugar will put them in ketoacidosis and risk coma. Delaying case in either case could result in death.

Managing blood glucose of a young child is very difficult. It’s not unusual for a child to have burst of energy consumption due to excitement with little reserve. Visiting a "fun " relative who does not restrict you from doing whatever you want is exciting.

If the mother does not comply it would be more productive if she could be educated instead of nagged or reprimanded. There are generally available charts that list symptoms of high and low blood sugar and consequences of them being maintained very high or very low. I’d start by getting one of those taking it to the temporary caregivers home and having them put it on the door of the refrigerator where they see it everyday. If that isn’t persuasive enough I’d look for horror stories and print them up. I wouldn’t make more than 3 unsuccessful efforts to get compliance before seeking an order of protection for the child until the mother the prove competence.as a caregiver.

Imo The blood glucose range that the doctor had set for a growing child is too narrow. The normal target range is 70 to 180 mg per deciliter a correction target between 110 and 125 and a target time in that range over a two week running period of 70% or better. Only after achieving that do you try to improve time in range not tightness of range for a child

Even using an automated insulin infusion device with a CGM, it would be difficult to achieve the range and TIR you’re trying to maintain with any newly diagnosed person with T1D. For s growing child it’s harder

The best trained stable mature adult bodies with diabetes would have a difficult time with that range.

With decades ofnexperience. I’ve had a few days in a row with 100% time in that range. Those are pleasant surprises

All it takes despite my best efforts,to go out of the 70-180 range is a disturbance in the environment like a 95° day, a disturbance in my health like an upset stomach or a mild infection. Mistiming insulin before a meal, even though the carbs are covered correctly andsn

worked 3 days in a row can give me a spike out of range simply because of no carb meal composition. I come back down to my target two hours or 3 hours later but in the meantime there’s that big spike. Worrying about it being there is stressful. Heightened attention on that by my house asking about it, is stressful. Stress has an effect on hormone levels and can make it harder to control blood my glucose from going low later. Once I fully realized that I lowered my standards and expectations, relaxed, and without doing anything else my average levels stabilized, my T1R improved.