Hi everyone. Newbie question! Apologies if this is stupid/has been asked…
Our 12 year old son was dx T1 in July, and is only injecting Levemir twice a day (1u at night and 2 in the morning) managing with diet. We are starting to see an uptick in blood sugars late in the day, even while eating a pretty low carb diet (all carbs from veg, some fruit and nuts). The endo was pleased with his numbers earlier and said we could talk about bolusing when things changed. I think that’s happening, or else we need to fine tune the basal, if that might help.
So, my question is two fold: would you suggest we try two units of Levemir at night or increase his daily amount to three? We don’t have a CGM right now, so I’m pretty scared of night time lows. He has only dipped into the 60s twice while he was away from me, but it was pretty easily corrected with a meal.
Also, we would like to use Novolin R for his bolus needs. We know that we can get the vials OTC from Walmart, but can this also come in cartridges and can I get this OTC? Can R even be used in Pens and what has your experience been if so (I just assumed we’d be using the syringe/vial method)? How do I get a compatible pen without insurance coverage (we are not covered at the moment)?
Again, I apologize if this has been answered or if this is stuff I should know. We haven’t had the best experience with our endo “team” so I didn’t know to even ask this at our last appointment, and the info wasn’t given. Thanks so much!
It really is best to see if your healthcare team can give you advice on insulin dosing. Since your son is on such a small dose of insulin a change by even a unit can be a large percentage increase.
Although Regular and NPH are available OTC at Walmart, most insurance plans in the US also cover these in pen’s through their standard formularies. You just need your doctor to prescribe Humilin R in a pen (note that Novolin in pen form was discontinued in 2009). You can also choose to use a reusable pen, there are some on the market that support 1/2 unit dosing.
I will do that about dosing, was just wanting to get some opinion before contacting them. They generally do not respond to me, but will respond to my husband (don’t even understand this phenomenon but OK) so I want to give him all the info I have gathered. But, I agree about getting in touch with his endo before changing his dose.
Good info on R, thank you. It wasn’t even suggested to us by the endocrinologist (just humalog and lantus, initially) but we really would like to try that since it seems to fit our way of eating better. I think I would like to keep him on pens and have back up R in vials if need be, so I will talk to the endo about that. Since this is all out of pocket, any idea how much Humilin R will cost in either cartridge or prefilled pen would run us? Sorry for so many questions…it really wasn’t explained.
Every insurance company is different on negotiated prices and out of pocket cost. You can ask your doctor for a paper prescription and then have your pharmacy run it through to tell you the prices and cost before you buy it. My experience is that even though a vial of R is $25 a Wally World, insurance covered pens were priced at like $150 for a box of five pens.
Thanks, Brian! Do you have any idea the shelf life of these pens vs vials? He probably would need such a low dose to start, I wouldn’t want to waste them. I am sold on the vials for sure, but I’d like to try to get the pens just for the little guy’s comfort–it’s psychological, but the pens seem less threatening.
I’m also wanting the option of 1/2 dosage but I’m not seeing that available in the prefilled Humilin R pens, do they even make reusable pens for Humilin R?
The prescribing information says that Humulin R lasts for 31 days outside the fridge or opened. Kept in the fridge and unopened Humilin is good till expiration, usually 2 years. The pens only come in 1 unit doses. Sadly there are no pre-filled pens that I know of that support half unit doses. There are reusable pens that use cartridges that do half unit dosing but as far as I know Humulin is not available in a cartridge.
ps. And I just checked, my mail order pharmacy no longer has Humulin R pens, only Humalin N pens.
These are walk-up prices and they don’t appear to show any prices for pens of R.
I think @Brian_BSC has provided great advice, as he always does!
I can’t speak to the dosing questions you have - sorry. But I can speak to increases in dosing needs in the months after being diagnosed.
My son was diagnosed when we was three. He’s currently thirteen. He started on a plan of NPH and Novolog and used very little insulin at the beginning. Like - VERY little.
He used NPH as a strategy to minimize injections. The intent was to have the peak of NPH cover his lunch and an evening snack. That worked beautifully at first. But soon after I saw his BGs going up after the requisite evening snack.
His body was changing. After diagnosis and getting on insulin, he rebounded nicely requiring very little insulin. But then the progression of diabetes slowly took hold. We had to adjust dosing accordingly. We actually eliminated the evening snack that was feeding the NPH as it was just no longer needed. The unfortunate part about that is his endo didn’t see this and suggest it. We were calling in Caleb’s numbers daily and getting dosing suggestions. I had to identify this issue which seems so obvious now, but at the time I was very insecure in my own ability to suggest a dosing change.
It’s great that you are thinking this through and coming up with your own suggestions. It’s very unfortunate you are not getting responsiveness from your son’s endo. That just isn’t acceptable. That’s the endo’s job and diabetes is still so new to you guys, they need to be able to counsel you right now.
Thank you, Lorraine! It does feel a little bit like we are on our own. I know this topic is sensitive over here, so I will tread lightly, but part of this is because we told the dietitian/diabetes educator that we were interested in going fairly low carb as a family. She was very against it and we were basically told at diagnosis to just do basal and work out the carbs ourselves and call when he had a change. The endocrinologist herself is very busy so difficult to get to her directly, but she is very supportive of my son’s diet and his progress. With that said, yeah, it’s very hard to have that open dialogue with them. I have called and left message after message and never gotten a reply for over a week. My husband has better luck. Everything I know (which is absolutely nothing, really) is from books and the internet, and even then I’m missing a lot. There are so many variables and I’m pretty overwhelmed.
How is your son doing now? I love hearing from other parents.
Perhaps you can get a recommendation to see a CDE, certified diabetes educator. 10 years ago my diabetes went into hormone-induced chaos and my endo simply did not have the time to sort it out for me. I went to a CDE (for the first time really) and she studied my logs in great detail, and after maybe 6 weeks, I had an all new routine that was so much better.
I’m really sorry to hear this. I know the choices are few and far between, but it will definitely help to find a medical provider that supports your choices and is available to you. We’ve changed endos twice and have found our fit for now.
Given your situation, I would experiment with small changes and test frequently and log everything. Analyze and adjust again. When Caleb first started pumping, we saw this nighttime increase in his bg as well and the endo was excruciatingly conservative in changing doses. I understand the need to err on the side of caution, but with hindsight, I also see that I knew more than I realized and could have been a better advocate for Caleb and gotten through a frustrating period more efficiently if I had.
Caleb is great. It’s been nearly ten years, and there have been a lot of ups and downs along the way - a lot - but he’s in a great position, doing a great job managing his diabetes such that it’s mostly in the background for him now.
We have one in our area, with one CDE (the one we struggled with). We are looking at relocating back home to be closer to family and perhaps get better insurance with his job, so fingers crossed. There are a couple more endo options there, so we will see.
That’s really great about your son and so encouraging to hear. Yesterday was particularly hard when it just hit me again that our lives just changed in one day this summer and, not to be morbid but, he now needs a drug to keep him alive. I just couldn’t stop crying (privately of course). I’m better today, but it’s just a massive new challenge/fear and no one really understands except parents of t1s and t1s themselves.
I had many breakdowns. I think there is a lot to happen within a full year’s time that make the diagnosis new until you get to that one year anniversary. I would say for me, it probably took a good 3 years before I was able to adequately compose myself on a consistent basis. I think a lot of that had to do with how little Caleb was when he was diagnosed.
There is a lot to learn, absorb and adjust to. And as you learn, you make decisions which change things, and then you start the learning cycle over. And then again. And then finally there’s somewhat of a routine where the rug isn’t consistently being pulled out from under you and you see that all really will be okay.
So…this grieving is normal? That’s good to know. I don’t know what I’d have done at that young of an age, but the fact that your son is thriving and happy gives me a lot of hope! I know I’ll get used to it, just still feels so raw to me. He also has aspergers, so, it’s like…how many things will this kid have to deal with? It’s just a lot right now.
Looking into some counseling but, again, nothing helps more than to hear other parents’ stories!
it is one of the older insulins that’s been around quite a while. For that reason many people, at least subconsciously, consider it obsolete. It isn’t. It can still do things that no other insulin can do as well.
The main visible difference between R and the newer analog insulins (Humalog, Novolog, Apidra) is speed of action. It takes noticeably longer to start working, so prebolusing has to be done earlier. It also has slower action, a lower peak, and lasts longer in the system. What that means is that it is a better match for low-carb, high protein meals, which take a lot longer to digest. I use it every day for precisely that reason.
Unfortunately we fell through the family insurance hole…make too much for assistance, cannot afford for entire family to be on husband’s new “affordable” insurance after it changed, and it’s actually less expensive for us to pay out of pocket than to pay for insurance now, in seems.
Thanks for looking that up Brian. So, that’s for the vial of humilin R? If they don’t make a pen form/cartridge, and it’s the same as Novolin R, I think I’ll just go with the latter.
NPH really is a different animal. There’s nothing it does that a modern basal/bolus regime can’t do better.
However, I still don’t classify it as obsolete for one very important, though non-medical reason: people with poor insurance (or no insurance) can still access it, and even allowing for its quirks, it provides the closest thing to a basal function available in those circumstances.
But, I agree about getting in touch with his endo before changing his dose.