Dexcom, scar tissue, depression, moods

(Hillary103) #1

This is long…hang in there with me, please

I am the mom of a 10 year old (5th grade) Type 1 child. He was diagnosed 4 years ago. I am struggling on so many different levels. Any specific advice in the questions listed below would be very appreciated.

We just got the Dexcom G6 and put it on him last Wednesday. My son is a very thin, sensitive child and has been resistant to any devices on him. However, his last A1C was a 9.7 and doctor basically required that he get one. We decided to jump all in and go for the pump too, which will be put on later this month. He has adapted pretty well to the Dexcom, but still complains that it hurts when he touches it (as in, he cries). As I’m watching his sugars go up and down, I am completely horrified that I can’t keep it better in range. His medical team is no help. They just offer the standard guidance. I feel like this is such a crap shoot!

  1. Any tips you can give for placement so that it won’t hurt him? He is currently wearing it on his arm.
  2. How about sports? He’s starting soccer on Friday. Do I cover it to protect it from being caught on something? He loves soccer, but doesn’t want to play for fear that it will get bumped or hit with the ball.
  3. Is is necessary to do both skin tac and an adhesive patch?
  4. Any tips on reading the Dexcom numbers and acting proactively? I’ve started being a little bit more aggressive with insulin since I can see his numbers first hand. However, I’m still gun shy. For example, today at 8:30 AM, his sugar was 190, I gave him a full correction and insulin to cover his meal. He ate breakfast about 15 minutes later. By 10:30 AM, he was 371…I gave another full correction and covered for some blueberries. He ate the blueberries when his sugar had dropped to about 180. By 12:30 he started tanking, so I gave him lunch without insulin before he got too low and then about an hour later covered part of the lunch. I have never “adapted” his insulin dosage like this before. I have usually just counted carbs, corrected when I’m supposed to and ride out the highs. However, because I can see his sugars live, its creating a lot of anxiety on my part and want want to be proactive.

My sons behavior is off the charts! I’m sure most of it has to do with his roller coaster sugars. I am at a loss of how to handle it! He has cried every morning about going to school (no bullies, nothing out of the norm…I have been extremely proactive in investigating why he might be feeling this way). He has been begging me to homeschool him this year. I finally decided with all the new tech changes, I would bring him home for the remainder of the school year. He is thrilled, but ugh…I am so stressed out! Trying to get anything accomplished when his sugar is off the charts is completely unrealistic!

  1. Any advice on how to help him manage his emotions when his sugar is out of control?
  2. Any other parents have younger kids like this struggling with depression?

He has a lot of scar tissue built up from giving injections in his arms…it seems to be the only place that doesn’t hurt. We do rotate sites, but he cries every time we give it in the legs or butt. Stomach is out of the questions, he gets lumps, with a lot of insulin leakage. We’ve tried ice, but I learned that impacts the absorption rate. I am really nervous about the pump because, he will not be able to have it on his arm. He hates shots so much that he’d rather not eat. He can give himself injections.

I’m really struggling here. Thank you in advance for taking the time to read by “book” and offer suggestions!

(joe) #2

@hillary103 giving extra insulin after you already covered a correction and a meal is called “insulin stacking” and it will lead to a low at the +4 hour mark, which you saw at lunch.

fast insulin isn’t all that fast. It can take up to 30 minutes to start working and will hang out for 4 hours, with a peak at 60-90 minutes in most people.

One thing you can do with a CGM is to start figuring a lead time for when you are doing a correction + meal bolus. My suggestion is to inject, wait until you see a trend indicating sugar is starting to drop, then eat. The trick here is that the CGM may be up to 20 minutes BEHIND reality, so when it starts to show a drop he may be dropping more than the current reading. I would start with a 20 minute head start but NOT go past a 40 minutes head start for insulin.

if you start a meal with carbs, with a BS of 190, you can expect a peak number on the CGM to be in the “3 hundreds” (period). don’t react until maybe 3 hours after or you risk a low. I usually add walking or other mild exercise to help insulin efficacy and absorption

You aren’t seeing his sugars live. You are seeing interstitial fluid, which is an approximation of blood sugar. All CGM are prone to error. All have some lag behind what is really happening especially during fast (rising or dropping) events.

Normal blood sugar is between about 67 mg/dl and 99 mg/dl, fasting, for approximately 30 mg/dl of total tolerance, which is about the sugar in 3-4 skittles. It is not possible to have tight control because ALL meters and CGM also have error. It is not possible to just aggressively attack with insulin because of the slow nature of “fast insulin”, and the external effects of exercise and stress. I have 40 years experience and I have learned not to be horrified at my typical sugar swings, given the errors and approximations of the tools to deal with this disease.

The only thing a pump is better at is matching actual basal rates with actual basal requirements. It’ll take months of careful testing to get the pump basal rates programmed, but once it is, having more control over basal will help all aspects of overall blood sugar control which includes being able to turn down basal rates to match his activity levels.

I was skinny as well, and it hurts. it just hurts. using the shortest needles and if possible the shortest cannula infusion sets is the only thing i can do. I cannot use my abdomen, at all. You can put a infusion set or pod in the back of an arm.

the top of my butt is the most comfortable, but to avoid scarring you have to rotate sites as best you can.

here are all the typical spots for injections, infusion sites and CGM sites.

infusion%20sites

He has had to deal with a lot. He has to deal with why you can’t fix him and why he’s being singled out and punished. He’s 10 and the idea of a chronic incurable disease is a major trauma and one could expect PTSD, anxiety, anger, and denial at the very surface of it. Therapy and exposure to others with Type 1 may be helpful.

You are doing a great job, and I realize all these gizmos may seem like a the best and most proactive “head on” and direct way to deal with this, however, it may be overwhelming to him. I know you’d do anything to fix him, but all these “things” don’t fix him. . please consider his adapting and using these tools may be driven by him wanting you to feel better. It’s just something that should be handled delicately, and tech won’t spoil. You can go on pump holidays whenever you want to.

good luck please stay in touch with this group and with other parents.

(Dennis J. Dacey, pwD) #3

.Hi @hillary103, @Joe has provided you with a wonderful and complete guide to help you, and your son, manage his diabetes. I will suggest that you attempt not to “over manage” his diabetes and that you observe carefully how his body reacts to food, insulin and activity.

His healthcare team is telling you what they have learned by observing him and [many] other people with diabetes, but keep in mind that we are all unique. Your son may not fit into the bell curve of the other 92% of kids with T1D; that was pointed out to me in the early 1970’s when I was involved in the development of glycosylated hemoglobin testing [now called the HbA1c] - I fell way out of what was expected. his doctors are doing their best.

Sports / soccer: sure, let him play and play hard but be observant and know how to manage his insulin. Having a pump certainly will make this more manageable. A pump will allow your son to have different profiles/patterns programmed for activation depending with his planned activity time.

CGM Sensor location: I place mine on my abdomen and have not had any knocked loose - yet. As fir his on his arm while playing - when I have my pump infusion on my arm, I slide a tube bandage [or section of a tight sock] over it for added safety especially when wearing a sleeveless gym tank top. I put this on mostly to keep the insulin infusion tube from getting caught on a piece of machinery.

(Michael) #4

First of all, hang in there! 10 is a tough age, and diabetes sure doesn’t help. I’ve actually been thinking about your post all day. I was diagnosed when I was 2.

I really think the Dexcom and Pump will be great - and one positive is less finger sticks and less injections! I actually love the G6 and it has a relatively low profile - I think it will be fine for soccer. If it is bother him on his arm, have you tried the belly? I personally have not experienced pain, but I have some extra insulation! I was thin as a rail as a kid, but that was before CGMs were really a thing.

I do agree with what was said above regarding not over managing - I still have trouble when I can see my blood sugar in real time. It took me some time to not want to keep correcting when I see my blood sugar rising after I eat - especially if I forget a bolus.

My first question might be tough - but necessary - do you think all of his pain is real, or could it be a bit of drama? I only ask, because when I was that age, I tended to overreact a bit. It was my mechanism for getting my parents to understand how difficult my life felt. It’s a very tough time at that age with your son trying to figure out who he is and how diabetes affects that - and I remember being scared and angry quite often. My emotions probably hit just about every stop on the spectrum.

One suggestion might be to try his flanks - if he’s super skinny he probably doesn’t have any fat on his arms. I used to always want my shots in my arms - it seemed to hurt the least - until I started to get lumps on my arms. I was ultra-guilty of using the same spots for my injections- which for me actually made my pain a bit worse. You can definitely get some calloused skin if you don’t rotate enough.

I think that you are right in assuming some of his emotion is probably due to his range of blood sugars. It’s tough - I still get very cranky when I have a low blood sugar and do the bounce back, or vice-versa with high to low.

Did you find out why your son didn’t want to go to school? Personally, that worries me a bit - just because emotional health is such a huge part of diabetes and overall well being - and I feel like this is something that often gets overlooked.

(Tracie) #5

I have an 11 year old daughter that is a T1D and has been since she was almost 5. She is on the G6 and uses the Tandem T-Slim pump. They work together, so when her insulin starts to tank the pump stops delivery, but this isn’t perfect, she still goes low. Last night she was 110 with double arrows going down so the pump stopped deliveries, but she still ended up with her BG at 48. So you still have to pay attention, but it definitely helps, and it is a lot better! I have also found that the G6 is very accurate. The advice that you got from Joe was GREAT!!! I will tell you that our Endocrinologist told us to put in some carbs before our daughter starts to eat, to prime the pump so to speak. We noticed when we do this that her BG does not go as high, but it will go up until the insulin takes over and brings it back down. That is just normal. :slight_smile: And I know you want to “fix” it, but you have to just give it time, it will fix itself. We were told by our doctor to not “fix” BG within 2 hours of eating.

As for school…
Both of my girls use to ask me to Homeschool them when they were in Public school. I don’t know if it’s because they weren’t challenged or what. They had great friends and all was fine, but they just didn’t like school. I decided about 3 years ago to send them to a Private school, and they have not asked me to homeschool them since. I even mentioned it a few times, as a joke, and they looked at me like I had 3 heads! LOL So that may not have anything to do with diabetes. It didn’t for mine, since only one of my two daughters is diabetic. You might see if there is something else there with that one.

Acting out…
Since my daughter was almost 5 when she was diagnosed it was tough. I didn’t know if she was throwing a fit because she was 5, or because her BG was off. What we did, was to check her BG and then decide which it was so that could discipline as appropriate. It’s a tough call, but it was the only thing that seemed fair. And the was before she was on the Dexcom, so it was a finger prick every time.

Soccer…
Our daughter has done just about everything since she has been diabetic. We don’t treat her any different than our other daughter. She has played soccer, swam, basketball, volleyball, karate, and dance since she has been diagnosed. She wears her Dexcom and takes off her pump. You will find that when your son does sports that his BG will be all over the place! Some times our daughter spikes and sometimes she crashes. We never know which way it will go. We sit on the side lines and track her via the Dexcom App. We always keep quick sugars with us and we just walk over to the coach or to her on the bench and have her drink or eat something as needed. Just remeber, there are Pro Athletes that are diabetic, if they can do it, then so can we! :slight_smile: We always tell the coaches and we always manage it ourselves.

You are doing GREAT! You care and you are trying! I am shocked when I hear stories of some of these kids who get diagnosed and how uninvolved their parents are. So, don’t be so hard on yourself, keep doing what you are doing.

Tracie

(Tracie) #6

Just saw this article… hope it helps… this kid is impressive with or without diabetes!

(Hillary103) #7

I really appreciate each response and encouraging words. You all gave something I could use!

(Jennifer) #8

Hi!! My son is also 10 but diagnosed last year. He got a dexcom pretty soon after diagnosis & he hated the noises it made in class. He was very self-conscious and thought everyone was watching him. We worked with his teacher so they could just glance at each other and he leaves to have some smarties in the hallway (he didn’t want his classmates asking why he was eating candy) or go to the nurse. It really just took time & now his friends know all about T1D.

He wears it on his belly and refuses to try other spots. He plays lacrosse and finds this location works for sports. He is also very thin and doesn’t have much fat so we sometimes have issues with having to change the sensor early before the full 10 days.

We noticed he would go really high for breakfast so we worked with our endo team to change his carb ratios for breakfast. The cool thing about the dexcom is they can get the readings too & then look back over time for patterns at our visits. They were able to identify the pattern at breakfast and now he gets more insulin at that time of the day.

Also takes time to understand how different foods affect his blood sugar - for example when we add peanut butter or bacon to breakfast he doesn’t spike as much.