Just want to remind all of you reading this that I am not a doctor, this is not medical advice. Merely how we manage the day-to-day of Elise diabetes. It works for us. I'm not suggesting it will work for you. Talk to your doctor about making any changes.
***Also, this post was written pre-pump... I was just too lazy to go in and make changes***
Some time ago, I was reading a post on Nicole's blog, and she mentioned how she had learned about how many people hate the insulin NPH at the FFL conference. She mentioned being shocked.
You know what? I'm not.
Because I have had people (not doctors, not CDE's, but people who think they know best) tell me that NPH is "a horrible, awful insulin", and that "nobody in their right mind should have their child on it".
If you don't know, NPH (or Humilin) is an intermediate acting insulin. It's said to have a peak effect 4-12 hours after injection, and a duration of action of 18-26 hours. That can differ from person to person and even from one day to the next in the same person. No wonder most people refer to it as, "Not Particularly Helpful" (get it? NPH? HA!)
Elise gets her dose in the morning combined in the same syringe with her humalog. We see it start to work about 2 hours after injection, a peak at about 4 hours, a second peak around hour 6 or 7, then it is gone by about 5:00 pm (as always, your diabetes may vary).
The reason we were started on NPH at diagnosis is because Elise was so tiny, and so early on in the development of the disease, that she was on diluted insulin (and still is for her fast-acting). The only background insulin you could dilute was NPH. To give you an idea, Elise's (background) insulin needs at dx was 1 unit of diluted NPH (or .20 of a unit), given once in the morning. That is an itty-bitty amount, people.
These days she gets 3.5 units in the AM and 2 units at night. And we don't dilute anymore. So why do we still use it? And why don't I hate it like everyone else?
For one, it means less shots for Elise. She only gets 3 per day, and gets to eat 3 uncovered snacks (and no lunch shot since it peaks at noon). Actually, with the way we have her dosage set up, she can pretty much graze (within reason) for most of the afternoon and not have any adverse affect on her BG.
It also means that at school, she can eat her snack and we don't have to worry about someone else giving her a shot, or me needing to go up to school to cover her snack. She just eats with the rest of the kids.
Having used this insulin for over 3 years, I have a pretty good understanding on how it works (in Elise's body) and how to tweak it. When we're not dealing with illness, stress, growth spurts etc., I often see a pretty straight line on her CGM, and we don't get those crazy peaks and valleys. This past week, her BG was between 85 - 150 for three or four days. It was BG nirvana!
And last, Elise's past few A1Cs have been; 6.7, 7.0, 7.0, 7.0, and 6.6. Because of the CGM, we know it's not due to lows. For whatever reason, we get awesome control using NPH and diluted Humalog.
Having said all of that, we would not still be on NPH if it were not for the CGM, which has allowed me to study and gain a better idea of just how the insulin works in Elise's body. NPH is a very unforgiving insulin in that you need to be on the ball and watching the clock for an approximate peak-time. With the CGM, I can see the peak starting to happen and act accordingly.
These days, I cannot imagine managing NPH without the CGM. To me, it would be like flying blind. Plus, I was lucky to be able to become an "expert" at NPH without any other distractions (read: other kids) running around at the time.
We are not going to be using NPH much longer; a move to the pump is imminent. We've done everything we need to do. Elise has given her okay. The delay is due to not knowing which pump to go with. We thought we knew, but some recent issues have changed our minds (that's a different post for a different day).
I just wanted to put it out there that NPH is not all bad. It's not the "evil" insulin like I've been told. It's just happens to be what works for us.
10 months ago
I think this is a great piece for people who may need some guidance with NPH -- and also, a great definition of what NPH is, because I never really understood what it was.
ReplyDeleteI am actually old school - I love NPH and still use it whenever I have to go off my pump. I'm experienced with NPH and know exactly how it works in my body. Also, as someone who is fairly active, NPH's "intermediate" status means that I can more easily adjust for intensive physical activity. Finally, the newer basal insulins scare me - they were approved very quickly and have not been used for all that long. NPH has been in use almost as long as insulin has existed and this means we are well-aware of its long-term side effects (none). As I always say, when dealing with type 1 diabetes, you've gotta find what works and just stick with it.
ReplyDeleteYOU, my friend, are a NPH ROCKSTAR!
ReplyDeleteI probably wouldn't have such a poor opinion of NPH if the endo would have considered diluting her dose.
But this is the same endo who put her on a Novolog breakfast ratio of 1:10 (at 25 lbs) when we switched to Lantus...because they were "streamlining" the care for ALL diabetic patients on insulin -- didn't matter the age, other medical history, or type of diabetes. If you were on insulin in this practice, you got a breakfast ratio of 1:10. PERIOD.
I spent the better part of that 7 months feeding insulin, watching the clock, chasing lows, and living in a constant state of panic... just waiting for the next time she would pass out.
I was a scared mother, and called the office over and over again, begging for help.
They told me it was normal. It's just the way it was going to be, because her life depended on insulin.
Maybe NPH/MDI would have been easier had we been able to access a CGM -- they were practically unheard of when Addy was dx.
Maybe a lot of things.
I don't know.
I just know that I'm incredibly grateful for ZERO basal rates, micro insulin doses, and IOB.
Not to mention the superfab endo who intervened...who, btw, I will follow to the ends of the earth.
NPH is my friend and my foe! I am a clock watcher for sure...lately it has been peaking when I least expect it to. So glad that you guys were able to get it to behave itself for you.
ReplyDeleteI have to agree with you - NPH can be great. We used nph from diagnosis in 2nd grade through 4th grade. It worked great, peaked around her school lunch time, didn't require an injection at school, etc. In 5th grade everything changed with a later lunch time. Instead of trying to move the morning nph we went to levemir and novolog shots at every meal. Ava was older and could do the pen injections herself. Both ways were fine. Now we're pumping on omnipod and loving it (although this weekend was crazy - a ski accident requiring pod removal for x-rays and defective spare pod! Oy!)
ReplyDeleteBottom line, there isn't any one right way to manage this crappy disease.
Wow! Joanne, this post was amazing and informative. As someone who has never used it, but has heard of it...what a great way to get an understanding of how it works. I had no idea Elise only got 3 shots a day and could graze! Amazing. Totally "get" why you loved it. And I always wondered what "magic" you used to get those beautiful straight-ish CGM lines. :)
ReplyDeleteWe only used NPH for the first month of diagnosis with very poor results. Her BGs stayed in the 250 to 300 plus range, they had to increase her TDD to 18 units a day and she was 50 pounds. Humalog dose is included in the TDD. On Lantus and Novolog she had great blood sugars within a week and she needed less basal, 7 units a day. If someone says they love NPH then I just assume it obviously works for them. Everybody is different. What works well for one may not work well for another. But I did assume since the nickname for NPH is "not particularly helpful" that most perceive NPH as an unpredictable insulin. Each Mom knows her own child and if NPH works well for Elise that's great. You do only need two shots a day with it, and it is an inexpensive insulin.
ReplyDeleteGreat post . . . I'm such a hater! :)
ReplyDeleteI've enjoyed so much reading your blog for the past week. I really wish these blogs had been around when my son was diagnosed in 1997 at age 4.
ReplyDeleteAt that time we used NPH and R (Regular) because that was all that was available to us. When Humalog came along, well, as you would say, I wanted to roll around naked in it, run off to Vegas and get married to it, I was so in love with it. He got one shot of NPH and R and one shot of H in the morning (could not mix H with NPH and R), and I think we ended up doing H at dinner and NPH at bedtime after much experimentation.
But, even after we started using Lantus and got rid of the R, we continued using NPH with H in the mornings until he was in high school. It was unusual, but it worked for us and he didn't need shots at lunch, which really worked for us.
Caring for a child with diabetes is a marathon, not a sprint--when you have a groove and it's working for you, you stick with it. I cannot imagine caring for a baby with diabetes--4 was young enough, but not even on the same planet as having a baby. You're doing a fabulous job!
Kat
I have a 5 year old boy (diagnosed at 3) that is on Humalog and NPH, and he's only on morning and bedtime insulin. That's 2 shots per day people! As long as he gets activity in the late morning or early afternoon, we don't need supper insulin. He loves the NPH with his whole heart and soul. Me a little less, because I am the clock watcher/food lugger/night tester, but it works for now. I imagine this magic will wear off when he grows a bit bigger.
ReplyDeletei am so glad NPH worked so well for you! as bennet says, your diabetes may vary.
ReplyDeletei, on the other hand, HATE NPH. the very letters strike fear in my heart. but that's because NPH was the cause of three low seizures for me as a kid. scary stuff.
i love this post because it really does illustrate YDMV, and the importance of not judging others for choosing to treat their diabetes differently than you.