@mawa316, one idea I believe @wadawabbit is sharing also might be to get an advocate involved. If you have picked a brand for a CGM, like Dexcom, reach out to Dexcom and let their in house insurance gurus work for you. They would work for you. I had a change on my Tandem pump when I went on Medicare + private insurance to a distributor for pump supplies. Dexcom was able to ID I would stay in house with them.
So, pick your brand and let the manufacturer’s fingers do the walking (waiting on hold) etc for you.
So still trying to figure out this whole dosage/level puzzle. I guess it never really gets figured out. The doc reduced his insulin scale since his numbers had come down. They said to call if we see a pattern in the 90s as they would like him in the hundred-ish range somewhere.
Since leaving the doc yesterday he was 84 before dinner (6 units), 122 before bed (14 units basal), 81 before breakfast today (6 units), 104 before lunch (6 units), and 79 before dinner tonight. He did not snack before dinner tonight so checking midway between lunch and dinner + snack is probably going to par for the course.
They didn’t really tell us snacks are mandatory and maybe not if he’s high (unless he eats a zero snack), but if lower, he’ll snack. I guess we just weren’t paying attention to the snack if he wasn’t hungry. Again, lesson learned.
Wow, you all are doing awesome (awesomely😁)! As I said before, you’re learning how to adapt and adjust, which is key as it is something you - and your son will be doing for life. It’s daunting but as you can see you learn and it will come more naturally.
There are some people who keep their glucose level in the 80s for very tight control, and apparently some adults have trained their bodies to function at that level. For others it can be unhealthy. I can’t really speak to that because I’ve never tried it myself but there are some on the forum who have commented on it from experience.
These are adults, and I don’t know what the guidelines are for kids but go with what your doctor instructed, 100 or so. That will give you a cushion to with if he does start to drop so you will have time to take action.
BTW, I wanted to suggest you have at least 2 BG meters - one for home and one for when you’re out. Funny story: I was in my 20s when I hit my first home BG meter. Through college I think I took 1 shot of NPH in the morning, but after that this “new thing” called multiple daily injections with BG testing can’t on board. Can’t tell you how many times I tested for breakfast, left for work, and had to go back home because I had left my meter on the counter!
My doctor was fine with me using multi meters so long as they were the same make - comparing apples to apples. It might be worthwhile investing in one he can take to school or wherever he goes. Even though I now use Dexcom’s G6, which does not require fingerstick calibrations, I do keep one with me in case what I feel does not match what it shows. Anyway, good to keep one with you.
Yeah, yesterday was upsetting for our young guy. He was 69 at bedtime and the fasting juice only brought him up to 74. We called the doctor who reduced his basal and meal time scale dosages again.
We checked at 10:30 and he was at 125, but back down to 72 at 12:45 AM. He ate a yogurt which brought him back up to 92 then I checked again at 3 AM, 113. Does this sound like the honeymoon phase starting maybe? I’m guessing the scale will go down again over the next several days.
It’s a lot more nerve wracking hovering around low that it was when we first came home and numbers dropped slow and steady towards normal.
Sorry for all of the detail, but maybe someone will get something out of it in the future, along with all the good advice I’m receiving, of course!
Yes it does. It ok for him to use very little insulin during this time. He might not need meal insulin at some point. The way you tell us blood sugar as long as it’s in range you are fine. In the wise words of my favorite doctor: you can always take a little more insulin.
The nurse did mention last night when we called with his levels that his body may be helping him out.
Today is shaping up to be another bumpy ride. His before breakfast was 101 (5 units). We checked mid morning and it was 159. He wasn’t hungry at all so didn’t eat a snack. When we checked before lunch it was 55! Rule of 15s corrected it to 121. That’s a huge drop from 10-Noon.
We’ll check for sure throughout the day.
I guess the snacks are a must. They say 10g carb snacks or less for him right now.
The doctor’s office called this morning and wanted to know if we can come in on Monday since he’s experiencing some lows. We’ll be away on vacation so they said our previously scheduled appointment after we return would be fine. I’m guessing since that it could wait until Monday instead of today that it isn’t an emergency. Maybe that’s hope.
I’m not mentioning anything in front of my son as he so wants to get away, but I’m not sure if we should go now.
I guess the snacks are a must. They say 10g carb snacks or less for him right now.
if you’re taking too much insulin (meal and or basal), then yes, the snacks are required because he’ll be dropping between meals. lots of testing, but more importantly, understanding what the
philosophy about changing meal and basal insulin is how you takeover control in the long run.
very soon you will abandon the “scale” and do this all by carb counting and knowing his carb ratio and sensitivity. that’s where you want to be. the sooner the better, but since he’s probably making insulin, any ratio or sensitivity will change drastically in the next few months. you’re doing great, steady as she goes.
Tonight before dinner, he was 82. Since that falls on the scale line between 3 and 5u and since he’s been running a little lower, we decided to give the lower dose or 3u. At 7:30 he was 143 so we’ll see what he is at basal time.
Sorry about all the minute details, but it actually helps me to bring things into better focus when the bullets aren’t flying in the battle. If its too much, I’ll just open a Word doc on my computer and type away!
Those minute details make all the difference in the world, and you are learning how to interpret them to make adjustments - a critical skill. I imagine you are checking in with your doctor to keep them apprised. They will let you know if his following numbers are where they would like considering he is young and adjusting.
Matt, the responses have been great. A lot of topics touched on. My son was diagnosed at 20, sophomore at college. I had the same feelings of heart break for my son. That feeling really never goes away as a parent. You and your son though will get more knowledgable in every aspect of diabetes management, and the day to day gets better with time. There are some rough patches when nothing seems to be working with control, but these are learning experiences and you get through it. T1D is definitely a team sport. Surrounding your son first with family support and understanding on what it takes to manage around meals, vacations, being at school, on a job, activities, when they are alone etc. Finding a good endo who is compassionate and willing to listen. T1D is different for everyone. Some endo’s are too bought into to Pharma and medical company marketing brochures in the advice they give, and don’t do enough listening to what works for the person. Find the right doc and don’t hesitate to trial a few until your son connects. Make sure to get to know the other endo office resources i.e. diabetes educator, nurse practitioner you can go to in addition to the doctor, dietician. Download the office app and use their messaging feature for quick questions. If the office is any good they are checking messages and responding daily. Saves a lot of visits and phone calls. Also research mental health providers and don’t hesitate to use. In terms of supplies. Insulin, strips, lancets, syringes, glucagon are Pharma. Pumps, pump supplies, CGM are medical supply houses. The medical supply house will be dictated by your insurance. Insulin you have two primary choices Novalog or Humalog. They are basically the same formulation. You want to stay current versions, which are faster acting (10-15 min) vs older formulas. The hospital your son was diagnosed or a Children’s Hospital should have classes for newly diagnosed that go over supply options and T1D management. My son went with Verio One Touch for his glucose monitor and Tandem for his pump. There are several glucose monitors that can do the job and your insurance company may only approve certain ones, so check there. The monitor will dictate the strips and lancets. The monitor should also be free as a Pharma benefit (once every 12 months). You can have the endo write a script (most common) or contact the company direct and apply for a free unit (with doctor script). Your doctor’s office also may carry a supply. Our research pointed to Tandem as the best pump option, but it’s definitely personal choice. The new Tandem X2 and Dexcom G6 is one to check out. Managing doctors and insurance companies is a big effort. Educate yourself on your coverage. If an insurance company denies a particular coverage, talk to your endo about writing a script that calls out medical necessity. A good endo will go to bat with you, and in some cases can override the insurance company plan. For example, number of testing strip used per month or particular brand you want to use for equipment/supplies. The insurance companies have contracts with suppliers and force you into that program. Their rationale is always cost savings, so if particular program isn’t what’s best for your son pick your battles if it’s a problem. What I have found with insurers is that the biggest challenge is knowing all aspects of your coverage as opposed to insurers not allowing a claim. There could be bundling benefits when you order insulin and supplies at the same time, or when you qualify for zero deductibles etc. All the best.
Thanks so much for that very informative reply. So glad I found this forum right away!!
Two things that stood out - finding the right doctor. We have pretty much decided to try another doctor already. We have yet to actually meet his endocrinologist and only see the nurse practitioner in mid July. Maybe that’s the norm, I don’t know, but we don’t feel that this current practice is supportive enough. I’m not sure if that is the right way to put it, its just a feeling we should check out someone else.
Another was the hospital classes you mentioned - we did have a very good diabetes educator who visited with us for about 6 hours. The other part of her time with us she spent working with our insurance to see all of our supplies were initially covered, which was more than helpful. There was no education on supply options, which has been the cause of much of our frustration.
Just reading Think Like a Pancreas, which seems very informative. I don’t know if this is stuff for the seasoned veterans of the T1D club, but no-one told us about subtracting the fiber carbs count from total carbs as it is resistant to digestion and doesn’t raise blood sugar. I might have missed that though with the flood of information we were inundated with at the time.
Subtracting 50 of sugar alcohols, if used, from “sugar-free”/“low calorie” foods was another fact presented.
Also, if eating a low carb meal (<10-20g), assume 50% grams of protein will be converted to glucose.
Hey Matt, I’d suggest having your endo write a script and submit to the insurance company. The insurer will then contact you with how they want you to order either a specific medical supply house or direct with the durable medical equipment company. Same with pharmacy benefits. Have the doctor submit to where you get your prescriptions filled. You should only have to do your own research on medical supply houses if you are switching insurance companies and are trying to check out their coverages before you switch. Your insurer should be able to direct you after they get the scripts. The classes your son takes should cover the different glucose monitors and equipment options. My son had to start with carb counting and syringe injections for 6 months before he was approved to get a pump. They wanted him to learn how to manually manage first and understand carb counting. It was helpful as education, or if the pump is to go down (had that happen once). If the pump stops working, by the way Tandem for example will ship a replacement to arrive next day. Pumps are typically under warranty for 4 years, so your insurer approves a new pump when the warranty runs out. Of course, check all these details with your insurer and your specific plan. Insurers have numerous plans depending on your employer. My experience has been with Aetna and Caremark/CVS, Tandem, Dexcom, Verio, and CCS Medical Supply. One last item. Glucagon is now available in a nasal spray (available over the past year). Insurance companies are just starting to approve. We had to call our endo and ask he write a script. The brand we use is Baqsimi. It’s an easier process than giving a shot. Don’t hesitate to reach out with any questions. I am happy to try to help.
Hello. I sometimes use math, and sometimes use experience. To be more exact; when I don’t have experience I use math and test more, this forms new experience. All the exact math you can muster can be negated by illness, stress, or a change in activity. It’s fine to figure, but don’t let the extremely wide range of actual results throw you. Just a thought, cheers!
Hi Matt!! Your first post gave me chills because I was going through the exact same thoughts/feelings/difficulties almost exactly a year ago with my 11 year old son. We are coming up on a year of being diagnosed (6/24) and all I can say is it gets SO MUCH EASIER. All of the feelings that you expressed are still with me, just at a lesser scale. I still feel sad that he will have to deal with this his whole life, just not AS sad. (In addition to this sadness, I also see an amount of responsibility and empathy that are a direct result of coping with this disease that I know will serve him in life. Pros and cons with everything ) I still feel nervous when he has 300+, but now I know that there is basically no way to avoid it with a growing boy! I still feel confused some of the time, but diabetes and diabetes care has become almost a second language to us. We joke that giving shots used to be so hard and now I can throw it across the table and into his belly like a dart board. Anyway, I just wanted to let you know that it gets better and I’m here for you.
Thanks so much for that info! I thought that someone at the hospital said my son would be counting + injections for 6 months too. Then there were a few here that said there’s really no reason for that. I’m not too concerned with the injections lasting for however long the care providers feel is necessary, but I definitely want him on a CGM by return to school in the fall (if this damned virus is cleared up by then and kids can return).
He handles the injections well already and I would think that is like riding a bike. Once done, he’ll never forget how to do it.
For the emergency meds, I guess our insurance approved both the Glucagon and the Baqsimi as we have both. The nasal med seems like a pretty big breakthrough.
) I still feel nervous when he has 300+, but now I know that there is basically no way to avoid it with a growing boy! I still feel confused some of the time, but diabetes and diabetes care has become almost a second language to us. We joke that giving shots used to be so hard and now I can throw it across the table and into his belly like a dart board.