That’s the problem. My son doesn’t seem to feel all that different either high or low. The only things we’ve been able to pick up on for lows to this point are a dull headache at times and he tends to get a little irritable at times as well.
School is covered as they are aware and he has a 504 plan.
So, I’ve been locked out of the forum for a while until they resolved login issues and glad to be back.
What I did want to post in that time is that we’ve adjusted my son’s basal dose and he seems to be good overnight with no lows. He was still going low after dinner and sometimes before bed so his scale was reduced. Now, he’s pretty much going into the low 200s with every meal. Now to tweak the bolus dosing.
Happily, school really hasn’t been a problem and the school nurse is GREAT!
Welcome back! It sounds like you all have got a good handle on things, and I’m glad school is going well. Sorry to hear about your lockout - what a pain! Glad you finally got back in.
@wadawabbit, @mawa316, @Dennis, @joe
I too was “locked out” for a while. I am not happy. I debated whether to say anything here or not.
I am not certain if Matt’s login lockout was the same as mine or not. I can report what my IT peers shared as it relates to cookies. It appears code writers within the JDRF web team want people who log into this forum to accept cookies. My IT peers (I was a backup network admin at a community college when WIN NT 3.51 was ‘king’) taught me years ago, accepting cookies unwise. While 99.99% of cookies are fine, it is the 0.01% or less containing malicious code we need to block. My Internet connected devices block ALL cookies for this reason. It was this learned cookie blockade which caused my login rejections.
I hope the webmasters at JDRF see this and direct the code writers to prepare code without placing cookies on forum member machines. As I was taught early in life, don’t complain without a solution. The solution is for the code writers to record the media access control address ( MAC address ) which is a unique identifier assigned to a network interface controller (NIC) in every Internet connected device. The reason this is shunned is it requires a ‘little’ more computer storage in the site’s servers while providing the end users GARGANTUAN leaps in their security by keeping doors closed to malware.
The workaround requires accepting cookies while logged in, erasing them on log-out, and increasing the malware sentinel level to its highest. May rant. Thanks for reading.
This may not apply to the lockouts some of you experienced, but I find that when my VPN is active in may not able to log on to certain sites as I normally do, and have to go through additional security to get in - I’m not a techie but as I understand it a VPN masks your MAC address so the site doesn’t know that you are “you.”
Thanks for the info - I’ll keep it in mind if I ever have issues - and had better keep a screenshot as a reminder!
Plugging along, but I have another question. I may have asked this before, but after meals, what is a good rise in BS. I know its unpredictable I guess, but recently, my son has been going into the 200s after each meal. His basal dose seems OK as his BS remains steady overnight, but his meal doses were increased to fight the highs.
Just when I thought we were on the right track, he started having some lows so we switched back to his previous doses and even cut those in half at times depending on his BS level and trend at mealtime.
There’s really a lot going on that you don’t get to see until you have a CGM!
I guess my question boils down to… does one ever get to a point where doses are pretty stagnant for a while?
The one thing I’m not too happy about our new endo is that they gave us a scale and said we did the math for you. I have to ask them for the math they use. Also, I mentioned we switched endos, but I have a question about shooting questions to your endo. Typically, how long does it take for them to get back to you. What we have to do, aside from an emergency, is email the team to check his Clarity data then they will get back to us within 2-ish days. That makes me a little uneasy.
Anyway, that’s enough questions for now!
Hi @mawa316 there are no exact answers here. The rule of thumb is at 2 hours after a meal if you are 50 mg/dl higher than when you started the meal you should be ok. There is no exact number on the maximum peak. Some believe the peak is bad. My 42 years experience says the peak won’t kill you.
Sliding scale? Really? Listen. The endo is your employee. If an employee gives a half assed answer or isn’t working hard, or in this case isn’t working at all, what would you say to them? Oh thank you here’s your paycheck? NO! Time to crack heads. Time to demand what you need or put them on an improvement plan in lieu of termination.
Your child is growing. Everything will be changing until they reach adulthood. Stay flexible. Keep the goals the same but the treatments and rates and ratios will be changing. Plan that they will change yearly. You can tell by observation.
Cheers!
Thanks Joe!
Yeah, it’s basically a sliding scale they have us using. Just before switching endos, we were taken off sliding scale and given the math to figure dosing. I liked that much better. My thoughts on dosing for him would be to calculate at each meal with any correction for high or low, then take his trend into account.
It doesn’t help things with bad sensors and sensors that croak a day or two before end of life, but I guess that’s part of T1 life.
Our diabetes educator said the same thing about +50 two hours after meals. The thing that was concerning was that sometimes he was up higher (not above 200 though) for more than two hours, However, at next meal time he was in good shape, near target.
I just wanted to say, if your Dexcom sensors don’t last the full 10 days call and request a replacement. Even if it just lost 1 day, you’ll essentially have an extra one on hand - and of course they keep track of failures for QA purposes and to see if there are issues with any particular lots, etc.
Of you’ve found that calculating carbs worked better than sliding scale you can tell your new doc you want to keep it that way: in fact, if you show them numbers indicating that sliding scale yields better numbers they may learn something.
I communicate with many of my doctors cuts their portal unless it’s an emergency. My endo typically gets back to me in a day or two: Between office visits; hospital rounds; logging into my CGM account or looking at any papers I send and analyzing them; and patients in crisis, I figure it’s a reasonable wait to hear back.
I strongly agree with you on this Matt. Doing this calculation is nothing more than fourth/fifth grade arithmetic; and at age 13 your son could do this in his head - although for safety it i good to keep the calculations in a pocket notebook. A “sliding scale”, which he will need to carry about with him 24/7 is more suited for a more sedentary lifestyle, rather than a teen who is constantly on-the-go.
Yep, we had just started doing the easy calculations before we switched endos. The new endo said they were making it easier on us and just printed out the scale. I didn’t even think to ask at that moment, but will ask about doing the math on our own with next contact.
I wouldn’t say he is constantly on the go, but I would at least like to try the match again to see what shakes out with that.
@mawa316, Matt, you have been here long enough to know the info here from @Joe, @wadawabbit, & @Dennis are some of the best answers in the world.
In distilling your question: with insulin and carbs racing each other after a meal or snack, who will win? If carbs win, the CGM will show a mountain peak. If insulin wins, there is a fall shown on the CGM. If there is a tie, the line stays level.
I could not make out exactly what the new sliding scale you have been give is like. Was the math called “carb counting”?
To calm your frustration, I have a short story. I needed to eat supper out three evenings in a row. I went to the same Itallian fast food, ordered the same meal, counted carbs, and dosed with my pump. The result was later I had 1) a high, 2) a low, & 3) on target. Do you hear FRUSTRATION? I asked my CDE & endo, each replied with different versions of SWAG (Scientific Wise Ass Guess). What? Diabetes is out to make you think you are crazy by responding in random ways.
Matt, you are doing great. Take all you have learned, find the road, pick a lane and stick with it. Make changes if you see mountains or valleys ahead. Keep the faith. Remember you have tons of wisdom here.
Thanks J!
I guess we’re doing OK, but the highs and lows concern me. Again, this was stuff that was happening before, but we never saw before the CGM.
I believe the scale is for carb counting. The previous scale, I’ll call it SCALE 1, when he started running into the 200s after every meal was…
Carbohydrate Scale (.5u per 30 grams)
0-29g 0 units
30-59 .5 units
60-89 1 units
90-119 1.5 units
120-149 2 units
150+ 2.5 units
So, they switched to the following SCALE 2…
Carbohydrate Scale (.5u per 25 grams)
0-24g 0 units
25-49 .5 units
50-74 1 units
75-99 1.5 units
100-124 2 units
125-149 2.5 units
150+
As soon as we got SCALE 2 to combat the highs, he went back again to fighting lows. So, we switched back to SCALE 1 and even with that, we are pretty much half dosing.
He’s only on .5u of Lantus at the moment as well. That has been holding him pretty stable overnight in the 90-100 range, but last night there were a few lows.
Another wrench is always worrying about whether the CGM sensor is accurate. The current sensor seems to be OK at the moment as it does come around after a low (10-15 minutes after a finger stick check).
The biggest frustration is not being able to figure things out for him. I realize that is an impossibility or so it sounds, and as soon as that becomes engrained in my mind the better.
My son is handling the highs and lows pretty well. He does get frustrated at times if a low interrupts his activities, but other than that he’s managing. He does tend to be trigger happy with snacks at school when things start to trend down as it seems he doesn’t like to wait to see if things level off. I guess, since this is all new to him, that is somewhat understandable. He will wait things out while he’s home during hybrid model schooling and on weekends though.
I think that pretty much sums up where we are at this point in time.
Most if not all of his meals are fairly carb heavy as his diet is quite limited and he is resistant to trying new things, but I’m sure I mentioned that before. That’s one thing that make me nervous though.
While it’s intuitive to do this in increments of 5s and 20 (x units for every 25 or every 30 grams) his “happy medium” may fall somewhere in between - maybe 27 or 28. It’s best to try new settings for a few days to give the body time to adjust if you can (obviously you don’t want the lows to keep repeating). If you already have, discuss changing the scale slightly with your doctor.
@mawa316. I am with @wadawabbit. There should be an “in the middle”. These crazy number, calculations & two insulins thrown in with activity make me go back to an earlier idea.
A pump with one insulin, low basal, CGM integration, automated calculations seems the most practical. For example, if carbs calc at 100 you give 2.0 while 124 is the same presuming portion size is accurate & correct. However, if portion size is off & either 135 or 90 were true (10% up or down) then dosing goes in the toilet because of ‘kitchen deviations’. A pump providing basal would replace the Lantus and would be adjusted by the CGM and activity projections put into the pump before sports etc. The CGM moderated pump could watch for kitchen issues and catch them about 20 minutes out for highs or lows by adjusting the basal for the here and now (20 minutes predictively).
I understand making a suggestion like this is nearly treason. I sense a great deal of tail chasing, shaving up & down, & second + third guessing.
Before you pull your hair out, take these ideas and fact check them. Think it thru & discuss with the doctor. This is almost the same discussion I had with my wife, doctor, CDE, & myself 20 years ago minus the CGM integration. I ended up on a pump with a DexCom 7 back then
Let us know.
There’s something intuitive about increments of 5, so to counter the treason I prefer to think of it as *emphasized text the pancreas wants what the pancreas wants - sometimes it wants to sharpen our math skills. I’ve had carb ratios of 1:15 (too low) and 1:10 (too high) and hit on 1:12 as just right (sounds like Goldilocks and the Three Bears!). My Tandem pump allows carb ratios and basal rates up to 3 decimal places for even greater precision and even more precise dosing. That level of precision may not be possible for people who take injections. But while some people don’t want our can’t use a pump, many people do quite well without one.
@wadawabbit, If I am reading you correctly, pump vs. injector is another SWAG or “darned if you do, darned if you don’t” & may even enter Schrödinger’s cat situationally. (((GRIN)))
You got it. You just gotta find what works for you…
That, as most know, is the very hard part. So we recently stopped lantus and began taking half bolus doses, which worked well for two days. Now it appears we may need to start up the .5 unit of lantus and go with our newest scale from his endo to combat highs.
After dinner, he was above 200 for about an hour and 40 minutes. That scares me. We talked about a .5 unit correction as this was 3+ hours after eating dinner. We opted to resume the lantus dose this evening so we’ll see how that goes.
Do most typically wait until the meal time bolus to give any correction, or do corrections a few hours after eating come with more experience?
Also, how long above 200 is too long. I know its not good to spend too much time there. The highest he went tonight was 216, but hovered around the 200 mark for almost two hours as I mentioned.
Last night was a surprise pizza night where he peaked over 250 TWICE last evening. I realize that part of that is the pizza and delayed effect, but also the dose needs changing.
Sigh!
So no, I won’t do a correction on top of a meal bolus for 2 hours. If you nail the meal bolus you’ll be only 50mg/dl higher at +2 hours. If it was a meal only bolus and I was 100 or more above where I started at 2 hours I’ll add a little on top. (Add to my insulin on board). If you have a meal plus correction I’d wait 3 hours. Stacking insulin (a correction then another correction in a 4 hour span) can lead to a brutal low.
200 isn’t that high. My fast answer is 3 hours for a kid.
Don’t forget as he stops making insulin you’ll need to add basal (Lantus) and change carb ratios a little at a time.
You’re doing great by the way. Keep up the great work and good luck 