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NPH: Why we chose it (and regret it)

Discussion in 'Parents of Children with Type 1' started by SandiT, Apr 29, 2013.

  1. SandiT

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    I know that NPH is not the common choice, but we did have our reasons for choosing it over Lantus.

    A couple of things about NPH that appealed to us was:

    Fewer shots
    More scheduled

    My daughter goes to a private school that has no nurse. I wanted to be able to send her snacks and lunch with her, but otherwise, make the presence of her diabetes as unobtrusive into her life as possible. I didn't want her to have to get shots at every meal.

    I thought that less testing would help with that. I felt that the scheduled nature of her school would lend itself well to NPH. Once summer came, we rationalized, we would change over to Lantus.

    The reality of the situation has been that it has been an absolute roller coaster nightmare. I had to quit my part-time job so that I could be available to run over and give her adjustments. She has had many, many frequent lows and highs. She has to be tested at lunch and snack time ANYWAY.

    The concept was great, but the reality of it has been absolutely nothing like what it seemed would be the case. They mentioned, though only briefly, the unpredictability of NPH's curve. I was just too tired (or stubborn, or stupid, or something) to hear it clearly and really internalize it.

    It has been an absolute nightmare. I don't have anything to compare it to, but now that it's been a few months, I often end up giving Kira extra shots, anyway. Corrections for high blood sugar... a shot when she wants to add some more food (and then it's math, math, math... and often calling in to make sure I did that right, even).

    The scheduling of it does not translate well to real life. It looks pretty on a graph, and it makes a nice promise... but it cannot deliver on any of the good sides of a rigid schedule. It can only deliver on the "locked into it every day" side.

    Yes, she has to be on a schedule, but the only one in this deranged relationship that has any leeway is the NPH. :rolleyes:

    I think that it worked out well for her for the first few weeks when needle jabs were knock-down, drag-out fights. But now that she's wheedling, "I'll have an extra shot for it!" when she wants ice cream, it's almost torturous.

    So yeah. I just thought I'd share our experience with NPH, and how it held up none of its "promises" and has made everything far too hard. I know that most people will say, "I can't imagine why anyone would choose NPH," but we had what we thought at the time were good reasons. We wanted her day at school to be predictable and her not to have to test at every. single. bite. of. food.

    But that held to be not true and she still has to test every time we so much as look at her. And she has to eat exactly the right number of carbs--and you never know if she's on time with it or not (because NPH doesn't play fair).

    If you've considered NPH for the same reasons we chose it, please know now that in the end, it's just not worth it. It does not deliver!
     
  2. dzirbel

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    I just have to say, I don't know how you do it. That does sound like a nightmare. We started out on humolog/Lantus and carb counting and at first it too was a nightmare with learning it all. It will still have the big highs and lows but she didn't have to eat certain things or amounts and that was huge. Now that your dd is used to the shots, switching over should be easier for all of you.

    I would highly work towards getting the pump and CGM. My daughter got her pump at 1 yr post DX and we just started the Dexcom this week (2yr post dx). I am in love with the dexcom! I can FINALLY see the patterns better. It's like putting glasses on someone with severe sight issues. It all looks so much clearer now.
     
  3. Sarah Maddie's Mom

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    YDMV.

    Works well for some, not so well for others.
     
  4. nebby3

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    My dd was on NPH for 9 months after she was dx. We really weren't given a choice. I think that was more standard back then (10 yrs ago). There was no levemir and our endo said he wouldn't put a toddler on lantus. We asked for a pump after a few months but it took another few to actually get it.

    Anyway, NPH was rotten for us too. Our control was terrible and the strict schedule didn't work well with a toddler. If I had no choice but to use it now, I think I could handle it a little better because I know more about how D works. The person I have heard of who has had most success with NPH gives more shots per day of it than normal so there ends up being less of a peak becaise the doses overlap.

    The thing with D is, it is not just how much insulin you give but when you give it and when it is having effect. You need it to have effect when your child needs the most insulin which is affected by meals but also by their own body rhythms. For us, the NPH peak compeletly didn't match when my dd needed the most insulin (which we could see when we started pumping at could set her basals to when she needed the most). There is also evidence that NPH is particularly spotty in how it absorbs so the same shot will not have the same effect from one day to another.

    That is our experience with NPH. I wouldn't recommend it, but some people manage to make it work.
     
  5. SandiT

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    Our next appt. for the pump is May 16, then we can move on to our week of saline.

    It's only a couple weeks, but it feels like forever at this point, lol. We're working hard towards the pump, and we're also in process of changing endos. At that point, we're going to push for the dexcom, because Kira still either doesn't notice her lows or ignores it (which with her, it could be either one--she'll jump up with blood running down her leg and face and hands if she wants to keep playing, and say, "I'm fine!").

    I can't wait for the pump, but mostly for her sake. If we weren't so close to the pump, I'd switch her to Lantus right away. It's still a tough call because it's been such a yo-yo.

    Added to by the fact that our 'new' endo just doesn't listen to what I'm saying. She gets an idea in her head and won't let go of it for anything. So it's been a big deal all around.

    I'm hoping that the pump will at least give Kira some flexibility and a sense of being a little more in control of her own life.
     
  6. danismom79

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    ^^This.

    We used it so my daughter wouldn't have to get shots at school (she was really afraid of anyone but me doing shots). After a few months, we added Levemir as the "main" basal, but kept the NPH to cover lunch. We liked it, and she was on it for a year and a half (as well as Regular and Humalog; we were really bucking the system) until we switched to the Omnipod.

    It can be tricky, and certainly isn't for everyone. But it does what it's supposed to do if you know how to work with it.

    ETA: I still checked before every meal, before bed, and often overnight. Your endo shouldn't have led you to believe you wouldn't have to check before meals.
     
    Last edited: Apr 29, 2013
  7. dzirbel

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    That is right, I do believe I saw that somewhere in your posts. I'm still miffed as to why they do saline trials. We went right to insulin and I'm glad because I've heard that for some the saline can sting.
     
  8. mmgirls

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    There are many people that chose NPH or Regular still and make it work for them. There are far more that this is the only regimine that the have been offered or that they can afford.

    If my second daughter is DX on the 17th I will still consider these older insulins since she will be Dx'd before any symptoms/signs, and her fasting is still below 90.

    I hope that the move to the pump will work out better for your family and child, but it still is not perfect. The insulin that we give our children is no where near what the normal body makes, it is slow and incomplete compared to natural human insulin.
     
    Last edited: Apr 29, 2013
  9. mmgirls

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    When I did our saline trial I just dissconnected the tubing from the site and and keep the pump on me. I trialed it for my then 18month old.
     
  10. Andy'sMom

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    I'm sorry your NPH experience was so bad. We used it sucessfully for about 6 years (didn't have a choice at time of dx and didn't switch because it was working for him). The main reason we kept using it was to avoid the daytime meal shots. That being said, it was a pain in the you know what and very frustrating when kids brought in birthday treats or there was a class party, etc. that upset the carb counts. We're now on Lantus and Novolog and LOVE IT but since the NPH worked for us, I think it's a YDMV situation. Certainly, if something isn't working, your endo should help you try something that will. Good luck!
     
  11. Jillian06

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    My DD also use NPH but we use it differently than you do. We use NPH during school days to cover snack and lunch. We also use Lantus for night time basal and on weekends/no school days.

    Like others said it is YDMV. It works for us but we give very little flexibility with what she eats while on NPH. Two hours after her NPH she gets her morning snack of 15 carbs, 4 hours later lunch is 40-50 carbs, and 6 hours later another 15 carbs.

    It?s true that it is unpredictable but it was a choice we had to make because our school situation. Also, we are 2 years into this so we know what to expect and feed the insulin when necessary. CGM also helps.
     
  12. Amy C.

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    My son was on NPH from diagnosis at age 3 until the summer before 2nd grade at age 7.

    NPH worked because I made it work.

    I didn't like it -- especially the rigidness of the schedule. He had to eat lunch by 11:15 every day or would go low. He was almost always having low sugars.

    He told me he felt better once off NPH and on Lantus. Since there was nothing I could do -- he was on Lantus the month it came on the US market -- I was glad he was able to start using it when he did.
     
  13. cdninct

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    We hated NPH, too. DS was 2.5, so the fixed carbs did not work well for us. He puffed up like the Michelin man because we wound up feeding him so much junk when he refused to eat what we had expected him to eat (because it was easier to do that than to underestimate and leave him hungry). It made the first 5 months after dx miserable.

    Having said all that, it worked beautifully, numbers-wise. It worked very predictably in him, and the timing that we were using matched the insulin's effect very closely. I don't fault NPH for being a poor treatment of diabetes, but I do hate it for the lifestyle that it imposes.
     
  14. dzirbel

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    I have seen parents do this as a way to understand how it felt to wear it and especially for the wee ones, but I just am not understanding the saline trial on kids. I had read some of them having issues with the kids not liking the pump after the saline trial.
     
  15. Mimi

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    This is true for us. We used NPH for a year and a half. It wasn't always easy or perfect, but I worked hard and made it worked because dd did not want to take shots at school, nor was she interested in the pump. It certainly helped me to learn about how insulin works...in that way I'm glad we used it.

    We ended up adding in Lantus as well, which allowed a more flexible schedule on weekends, holidays and summer.

    The pump is a wonderful tool to help with diabetes management but it is not a magic wand that makes everything better. We had a rocky pump start and honestly, I was ready to chuck the whole thing. :rolleyes:

    I hope things go smoothly for you.
     
  16. wdhinn89

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    NPH & Humalog for first 1 1/2 years and then the pump. No regrets at all. I think for us it was the best path to take. YDMV
     
  17. skyblufig

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    We've been doing NPH & Novolog since diagnosis in November and with just a few minor adjustments, it's been really successful. Although, it looks like with the combo of the two, our schedule is a little more flexible. Idk, talk to us when the honeymoon's over, haha. ;)
     
  18. Megnyc

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    Just a tip:

    I see people are discussing doing a saline trial. I don't really have much to say on this-- I didn't do one. But I wanted to say that it is possible that the saline will sting but an easy solution to that is to use sterile water. You can use plain sterile water or what is called bacteriostatic water, either will work and won't sting :cwds:
     
  19. kirsteng

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    NPH is also working for us at the moment. We were diagnosed the same time as you, and have been using it and novorapid since. I have been poised to switch to MDI using Levemir or Lantus from the get-go, but since we have such beautiful numbers on the NPH we haven't changed yet. Honeymoon is still in full swing, so we'll see what happens when that ends. For us I think it works because our son is 3 years old and still at home - so I am always in charge of what he eats. We would have had a morning and afternoon snack anyway, so it's not a gigantic problem to have a specific number of carbs and choose something he would have eaten even before d/x.

    I do think it takes some fine tuning to get the dose right though - we have also seen rapid weight gain in the first couple of months, as our dose was high so he was always starving. Now that we've lowered down a fair amount, our son's weight is going back down.

    I hope the pump works well for you = we will also be looking at it at the one year mark.
     
  20. wilf

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    NPH works best during the honeymoon. It can still be used after the honeymoon, but works best then with either Levemir or Lantus to cover basic basal needs and one of the faster insulins (Humalog, Novolog, or Apidra) to cover breakfast and supper.

    Sorry it did not work out for you.
     

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