Help with Huge Lows with little insulin

Hi, My almost-12 yr old was diagnosed with Type 1 on June 2 this year. We have been managing well, once we got the hang of it (3 Rapid per day, 1 Levemir). But suddenly in the last 2 weeks it seems our world has been turned upside down. Every evening, usually between 9-10 pm, Caleb is going low really fast. We have been trying every combination we can think of. We've stopped his dinner Rapid (he eats almost no carbs @ dinner anyway). We tried cutting his Levemir, changing the time of it. Currently we are tying feeding him a huge carb dinner right before bed - this worked once and he didn't go low, but he did drop dramatically as per usual. His diabetic team (who are usually extremely helpful) just keep saying not to worry and that the lows won't stay forever. He is so exhausted and worried (and so are we). Has anyone else experienced this kind of thing? We feel lost in how to handle it. Thanks, Julie

My son was diagnosed at age 9 and we noticed right off that his activity level in the afternoon would cause lows in the evening and night. It was a delayed reaction (we were told this could happen). I feel for you and your son though, lows are scary and no fun. I would hope that your diabetes team would be more helpful. We would run a little high through these times, because it scared my son to get such drastic lows. Also, growth is another factor. The hormones wreak havoc, my son is now 6'5" and 17 years old, but for years we were adjusting a lot, with the help of his diabetic doc and team. They did let us run a little high because my son felt better and when we adjusted too tight, he was always getting lows. We spent some late nights making sure he was high enough to go to sleep. He is on a pump now which is helpful, but still requires a learning curve. Good luck. I don't know if I was any help, but sometimes just knowing that others have experienced it and feel for you helps. Take care.

Sounds like he actually needs some carbs. Carbohydrates are not bad. Just needs insulin to cover them. Carbs are energy for the body, without replenishing them the body is using up its stored reserves. If he’s going through a growth spurt his body has nothing to use.

Thank you for taking so much time and thought to respond.
As we are adjusting his Levemir, we are doing it every 3 days, like you suggested. He only gets the Levemir once a day, normally right before bed. We tried switching it to dinnertime, in case there was some insulin overlap, but it hasn't seemed to make a difference and his team prefers that he take it at bedtime.
We are not yet counting carbs, although I have been introduced to it and tried it for a week in the summer. To this point, the chart system they gave us has worked pretty well, along with intuition and common sense on our part. Although we are not counting carbs, Caleb is very much a creature of habit so his breakfast & lunch meals are pretty much the same every day. While dinner is a different meal each day, generally his intake is about the same.
Here is an example of why we are pulling our hair out. He came home after school on Monday and was 24.7!! However, we did not give him any Rapid @ dinner because we knew his pattern of going low in the evening. He received his Levemir @ 6 pm. He did not eat dinner until 8:30 pm. However, @ 8:10 pm, he felt weird, tested, and he was 3.4!! How did he drop more than 20 points when we gave him no Rapid and we have been assured that Levemir doesn't peak for nearly 8 hours? He did not have gym and just didn't have an active day, so exercise was not the culprit.
We will keep trying to pump him with carbs in the evening until this works itself out. But, do we have hope that this will eventually stop or even out, or make sense?

Thank you, Heidi, for your kind response. We have noticed a definite change in how his body responds to exercise. We are trying to take that into account and cut his insulin accordingly. It really does help to hear that we are not alone in our experience. I have a feeling Caleb will be similar to your son in growth. He's just 11 but already wears a men's size 9.5 shoe!! :) Right now our best strategy seems to be to fill him with enough carbs to put him in the 20s before bed so that when the drastic drop comes (which it just seems to keep doing) there is enough sugar in his system to work with. I guess trying to figure out how much is enough is the challenge. Last night he went to bed @ 18.4, but 1.5 hours later he was 4.4, with no Rapid given at dinner. It is hard to make him eat so much when he really doesn't want to. He's such a sweet boy, but I'm afraid he will get resentful as we try to work out a solution.

Thank you for your insights. Rod & I talked and we are going to try splitting Caleb's dose. We are so disappointed with his team right now that we're not going to connect with them on it until we are a little more even keel in our feelings. Since splitting the dose is an acceptable use of Levemir, I don't feel that we'd be causing harm to Caleb. We'll try it for the 3 nights initially and see if it helps reduce those evening lows. Thanks again.

My son is only three years old and was diagnosed this past March. I heave read every diabetes book I could find since then. One talked about the fact that during the honeymoon phase when the pancreas begins getting some help from insulin injections, it is able to “rest” and can then start functioning more efficiently again (not normally of course, just not as taxed)which may be why your son goes low. I was happy splitting our Levemir doses especially during the summer when I realized afternoon swimming might cause an evening low. I would skip the insulin altogether in that case. I also read that potato chips are the best snack for avoiding delayed lows. I bought some made with organic potatoes and olive oil b/c I don’t want my kid eating crap. I add a few to his dinner sometimes if he has been riding his bike a lot in the late afternoon. Learning about how carbs (or lack thereof), protein and fat all affect blood sugar and for how long has been a tremendous help. Type 1 Diabetes, A Guide for Children and their Caregivers by Ragnar Hana’s, MD, PHD has the study using potato chips (I recommend this book AND Think Like A Pancreas by Gary Scheiner)Good luck with everything and try to get as much sleep as you can!!!

Sarah, thank you for your thoughtful response. I appreciate hearing your experience and strategies. Thanks for the book suggestions. I have 5 children (only 1 with Type 1) and host 4 international students, so my energy resources are pulled in many directions. I think, therefore, I have been leaning so heavily on our diabetic team. It's time for me to do some reading to add to the knowledge I've gotten just through listening to the experts and of course, living with my diabetic child. Caleb will LOVE if I tell him he has to eat chips. :)
I do have a question: On days where your son is more active in the afternoon and therefore opt out of the evening Levemir, why do you choose to cut the Levemir rather than the Rapid? Or do you cut both?

Thanks, Theo. We have been pumping him with carbs in the evening in hopes of averting the lows.

Ideally, I shoot for reducing the rapid acting by half if he was very active before dinner (or lunch) or I know he will be jumping around after. I also make sure there is a lot of protein and complex carbs with dinner. Like yogurt with fruit or a grilled cheese on sprouted grain bread. For me it has been easier to give a small correction if the rapid was not enough than to have him go low b/c the lows make him SO hungry that he cries for MORE food than he really needs to correct the low:( BTW the ingredient in the candy Smarties is dextrose so it goes more quickly into the blood than regular sugar which has to be converted (to dextrose) by the body first. So I use those for lows (or juice but it 's easier to have a roll of Smarties stashed in my pocket/purse/car/ friends houses/ husbands pocket/ EvERYWHERE) Since lows can make you really famished I try to avoid that and catch it before it goes way down. So I test A LOT to learn how much and how fast the doses are dropping him. For example, i learned that if he is below 170 only one hour after giving the rapid acting, he will go too low by the 2nd hour. So I can intervene then with a SMALL thing like some animal crackers or whatever. I have a lot of bananas on hand too so that if he is going to over treat a low by over eating, at least there is some nutrients involved. Almond butter with low sugar jelly on flourless toasted bread is a good post low filler upper. After the Smarties of course! Seems like you have your hands full so here is a trick that had helped me keep track of where he is at: I bought a chalk board and put it up on the wall where i can see it easily. I write the time- blood sugar-carbs- units of insulin given (what time given if different than time I checked his blood sugar) then if I can just glance over at the board and know when and how much his last dose was. Or how long its been since he ate. I take a picture of the board at the end of each day on my phone before I erase it so I can look at it and say " ok yesterday his pre breakfast blood sugar was about the same as today and 1.5 units worked well for his 45 grams of carbs so lets do that same thing." Also my husband can look at the board and see what’s happened all day at a glance so it helps him learn what is working too. He uses the board if i am not home so I can get the update on whats up without asking him a million questions… I noticed Nate gets sweaty when he is going low so I try to tune into those red flags. The feeling of blood sugar dropping very fast can FEEL like a low so if your son says he feels hungry/tired dizzy/sweaty or however lows feel to him and you check him but his number is normal, be aware it may be on its way DOWN. That is what CGM’s are great for. We just got approved for one. I cannot wait!!! I also took a black marker and wrote the carbs and serving size on the front of things like boxes of crackers, cereal, cookies, bread etc so that I wasn’t having to look at those tiny labels on the side pf food everyday. It helped me memorize the carb counts of things we always have around the house. Pin a list to the fridge too with carb counts (in big writing) of the things you frequently have inside ( like 1 cup milk= 12g carbs or One cup strawberries=13g Carbs) wrote on my fruit bowl too for apples, pears, bananas, etc. it wont be long before everyone in your house knows them by heart which could really help you. I also keep measuring cups on hand so I’m not guessing. Have your son read Think Like a Pancreas, it is written very simply and by a guy who has had type 1 since he was a teen so he really gets it!! Sorry this reply is so long! Just remember: activity is a powerful blood sugar lowering tool so use it but reduce insulin by half with meals and adjust long acting as well. Let me know if the potato chips help with lows. Hopefully that has been better for you:) good luck!!!