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Do you wish you'd started pumping at dx?

Discussion in 'Parents of Children with Type 1' started by virgo39, Sep 18, 2010.

  1. virgo39

    virgo39 Approved members

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    I'm curious.

    I've been reviewing DD's records from dx last November (actually more than "reviewing" -- I am obsessively-compulsively manually entering the data into the CoPilot software so it's all in one place).

    OMG. I sooooo wish we had left the hospital with a pump ... any pump ...

    I see these insanely high numbers, including crazy high overnight numbers that took two weeks to bring down into anything approaching a desirable range. I see crazy BGs that were exacerbated by treating a low of 66 with 15 g. of juice :eek:, giving uncovered snacks when she was high, not doing any nighttime corrections, doing our "bedtime" BG check less than an hour after dinner, I could go on and on about the totally lame things we did those first few weeks.

    I can't help but think that we could have done so much more for her had we started pumping right away. I wonder if we would have had a smoother "honeymoon"?

    The dx was such a game-changer for us, I'm not sure learning how to operate a pump would have been any more difficult than any of the other adjustments we had to make.
     
  2. wilf

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    What you're seeing from those first weeks are the normal mistakes that people starting out on the path of D management make. With better training at the time, you'd have made less mistakes.

    I don't see how a pump would have made any difference, except of course for the additional training that's given for pumpers..
     
  3. Beach bum

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    I have to agree, that this is how it was for us. Definitely learned from our mistakes! Possibly even having to go through all the pump training, just the usual d stuff and life in general might have been to much for us.

    Kudos for those who do it right out of the gate (whatever your reasons may be).
     
  4. Sarah Maddie's Mom

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    No, I don't. I think the whole attachment thing would have been difficult for us to deal with at dx.
     
  5. Seans Mom

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    I most definitely do wish he had been put on one at dx. I even asked about it while he was still there and we had gotten the JDRF care bag with info about pumps, but was told he most likely wouldn't be able to have one till he was 10 yrs. old or so because being so young (3) he would just pull it out. :rolleyes:
    I was (and still am) willing to learn all I needed to take the very best care of my son, so I'd have put my all into the pump and shots if I had been given the option at dx. I don't think him being tethered to a pump would have been any more or less traumatic than the dx and giving injections were.

    Do I think the pump would have made the first few months easier? Oh yeah, drawing up 1/4 units in a 1/2 unit marked syringe was not easy and anything less, I had no idea if he was even getting anything so adjustments that could have been made easily with the pump weren't much of an option. The overnight rollercoaster was alleviated with variable basal rates that Lantus just couldn't do.
     
  6. nanhsot

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    Oh my goodness no I do not! Those early days were filled with such overwhelming fear and stress and education, I can't even imagine adding in something like learning that type of technology into the mix. I didn't understand the difference between basal and bolus in those days, the thought of trying to balance a pump with the lack of understanding I had...nope.

    My son has met all requirements for a pump but chose to wait until after football, he didn't want to mix learning about it while learning about how his body reacted to high level sports activities....I fully supported that and thought it a wise decision.

    I will say that we didn't see the type of huge fluctuations you mention post diagnosis, I guess we were lucky that way. I immersed myself into diabetes education and thankfully found CWD early on, which helped a lot.

    I also think it is important to know how to do MDI at least to some degree. I remember someone saying months ago that people should be required to do MDI for x number of years, I totally disagree with that, but I do think a basic knowledge of MDI is important as a fall back.
     
  7. BrokenPancreas

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    Yes!!!! Yes!!! Yes!!!!
     
  8. kimmcannally

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    YES! I think if Jackson had been introduced to the pump originally instead of shots, it would have been a much smoother transition. He did fine with shots because he "had to". But he wanted a pump. We got one but he didn't "have to" use it. So it's been more difficult than it needed to be, IMO. He likes pumping and doesn't want to go back to shots, but if he had started out pumping, he wouldn't have known any other way. In his case, it would have been better.

    I asked about pumping at dx, but they said we had to wait because of insurance. We didn't.:mad: but it still took 5 months to get started. Would have been so much easier to pump right off the bat.

    I hated coming home and having to make sure he got 75 carbs per meal - it was hard to get that many a lot of times. Then there were the times he wanted more and couldn't have it. I know a sliding scale would have eliminated that, but so would a pump!
     
  9. StillMamamia

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    This is EXACTLY how I felt. My son was put on the pump a couple of days after dx and I've felt this way for a long time.
     
  10. mathcat

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    Absolutely Yes!

    I much would have preferred to start immediately on a pump. My son had a sliding scale and we were taught to estimate using "carb" where one piece of bread is about one carb, etc. The estimating drove me crazy. I figured out his carb ratios on my own and figured out carb factors on my own within a couple of weeks of diagnosis. I would use my scale and calculator and then convert back to the "carbs" method for the logbook.

    To have been able to be more precise, to not have to do a bedtime snack to prevent a slight night low due to a Lantus peak, to have been able to let my son eat at parties without an extra shot would have been wonderful. We still would have seen highs and lows. We still would have had the big learning curve that we all start with. But, the flexibility that a pump offers would have been great.


    dx 8-30-04 at the age of 3, pump 3-29-05



    Edited to add:
    As much as I wish my son had been able to start on the pump immediately, I do agree that it depends on my factors such as the individual child and the parents. Just as I would never suggest that all should handle diabetes management exactly as we do, I would never suggest that all should start immediately on the pump as I wish my son had. I do believe though that it should be an option to those who seem ready and willing to learn.
     
    Last edited: Sep 18, 2010
  11. Christopher

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    I think it is dependent on you, your child and your situation. But no, I don't wish we started on a pump right away.
     
  12. emm142

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    No.

    I think it was important for me to learn the activity patterns of insulin before I started pumping. Also, it gave me something to compare pumping to (the pump seemed bettter because I came at it after MDI).

    I wish I'd been started on MDI at dx, rather than NPH/regular premix.
     
  13. Ellen

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    Anything would have been better than 2 shots of NPH/R with a toddler.

    At the very least I think today it should be offered as an option.

    Here's an abstract that will be presented at EASD next week...there have been other similar articles

    Presentation Number:929Title:The benefits of continuous subcutaneous insulin infusion in children with type 1 diabetes mellitus started at diabetes recognition. A 7 year follow-upAuthors:A. Szypowska, K. Dżygało, A. Ramotowska, M. Lipka, M. Procner-Czaplińska, H. Trippenbach-Dulska;
    Medical University of Warsaw, Warsaw, Poland.Keyword:36 Diabetes in childhoodAbstract:Background and aims: Intensive management, achieved by multiple daily insulin injections (MDI) or continuous subcutaneous insulin infusion (CSII), improves long-term outcomes in patients with Type 1 diabetes (T1DM). CSII and MDI are both effective in achieving near-euglycaemia, but CSII offers the opportunity to change the basal infusion rate according to the needs of patients and allows precise insulin dosing to cover a different kind of meals. In pediatric patients, CSII has been demonstrated to achieve glucose target and reduce frequency of severe hypoglycemia, without sacrifices in safety, quality of life, or excessive weight gain. In long-term follow up patients treated at T1DM onset with CSII therapy may achieve better metabolic control than patients switched from injections to CSII. The aim of this study was to compare efficacy of CSII at diabetes recognition with CSII after MDI in children with T1DM. The primary end-point was glycated haemoglobin.
    Materials and methods: 169 children with T1DM treated with CSII for at least 5 years were divided into two groups depending on time of starting CSII therapy. I group: 97 children (girls) with mean age 6.7?2.3 years switched from MDI to CSII, the mean time with MDI therapy was 2.2?1.6 years; II group: 72 children (girls) with mean age 6.2?2.1 years started with CSII within 3 month after diabetes onset. Data was collected every three months: HbA1c, BMI, diabetic ketoacidosis (DKA) and severe hypoglycaemia (SH), total daily insulin dose was downloaded from pump memory.
    Results: During the 7-year follow-up better metabolic control was achieved in the group II, the differences between group I and group II from the 2nd to the 4th year were not quite significant (2nd yr:7.33 vs. 7.08; 3rd yr: 7.33 vs. 7.09; 4th yr: 7.54 vs. 7.26%) , and statistically significant: in the 1st year (7.58 vs. 7.13%) and from the 5th to the 7th year (5th yr: 7.89 vs. 7.27; 6th yr: 8.11 vs. 7.48; 7th yr: 8.18 vs. 7.45%) p<0.05 . In the group II HbA1c was <7.5% and in the group I increased to 8.2% at the time of follow-up. TDD increased from 0.4U/kg/d to 0.7U/kg/d p<0.0001. The insulin daily dose increased in the I group from 0,7 to 0.87 U/kg/die and in the II group from 0.48 to 0.87 U/kg/die, the significant differences between both groups were observed in the 1st and 2nd year. BMI increased in the I group from 16.3 after the 1st year to 19.8 kg/m2 after the 7th year and in the group II from 15.9 after the 1st year to 18.4 kg/m2 after the 7th year. BMI was significantly higher in the group I in the 6th and 7th year of the follow-up. There was no significant difference between both groups in the number of episodes of DKA and SH.
    Conclusion: In longitudinal observation children started with CSII at diabetes recognition achieved better metabolic control than children initiated with CSII after MDI. The long- term benefits of CSII therapy started at T1DM onset should be taken under consideration before making a decision on CSII initiation. [​IMG]
     
  14. selketine

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    Absolutely, positively YES

    I asked for a pump within a month of diagnosis and was told I had to wait 6 months. That was just a wasted 6 months IMHO.

    I think it should be an option - at least to get it within the first month if not right at the hospital. It would such a nightmare trying to give him such tiny doses of insulin (even with diluted) - just a ridiculous situation. NPH was horrible for him - never a consistent response from it.

    I'll just shut up now or I'll rant forever but this was one of my biggest peeves....
     
  15. Michelle'sMom

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    I don't believe pumping at dx should automatically be ruled out. I think it's a very personal decision & should be based on the parents'/patients' willingness & desire to learn, & the availability of support & education.

    I am also very grateful that we were not offered the option. We had very limited education & support from our endo team at dx. I can't imagine how much more difficult it would have been to learn so much about d & insulin in general on our own, along with trying to learn the pump.
     
  16. bgallini

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    Definitely. Alex would not have had a hard time with the technology or the fact it was attached to him. He was started on nph and humalog and had to stay on that for a year. That made for some difficult planning trying to work around the schedule they expected him to be on. Like one night he was on a band trip and would be on the bus at 6 pm which was his required dinner time and then dinner was at 10 pm...at a mall. So he had a huge snack at 6 pm and a salad for dinner at 10....not what he wanted to do. Sure Lantus and a log would have given him more freedom schedule-wise but then he'd be lugging the syringes and insulin around with him all the time. A pump at dx would have been awesome.
     
  17. LittleGuy'sMom

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    I'm not absolutely sure I would have wanted to start pumping right out of the hospital but I wish we hadn't been made to wait 6 months. I chose to do NPH/Novolog and Levemir because I wanted to reduce the number of shots my toddler had to get. It was still very hard on him. My d team supported us getting a pump a month after dx but our insurance company had other ideas. It's great that there are studies that show that pumping is better when started at dx but I'm certain that the insurance companies will fight tooth and nail to deny anyone who tries to get one that soon.
     
  18. ecs1516

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    I don't think I would have also wanted to learn the pump and the whole new diabetes thing at the hospital, I would have been too much info. I do wish we could have done it sooner than 13 months. Going through 13 months of chasing down and holding my younger son (He was diagnosed at 10 months old) and giving him shots. All the tears from him and me. Trying to explain to a little one you can't eat now??But other kids can? He was the happiest boy in the world when he got his pump and said ,"No more shots". at 23 months old.:cwds:
     
  19. 22jules

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    Absolutely!!! I definitely would have preferred going straight to pumping right from dx. The thing that used to annoy me was hearing that we had to "earn" the pump---like did we have to earn the dx!!!:mad:

    Obviously it would have been a lot to learn but everything was a lot to learn so why not just do it from the beginning. Getting dx and put on shots changed her life so dramatically--having to eat at a certain time, having to eat a set amount of carbs, always having to eat a bedtime snack etc.--things that we did not do prior to dx. Of course this is also due to the fact that she was dx at 8 and since there is no nurse at school, put on a 2 shot a day regimen so she wasn't forced to give herself a shot. The pump would have been easy for her to do, with supervision, while living her life the way she had previously.
     
  20. chbarnes

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    We started pumping about 2 months after diagnosis. We could have started sooner. There are two sides to this: the emotional and the purely medical. The article cited by Ellen answers much of the purely medical question. Obviously, there is a broad range of opinion on the emotional side. But there is no proof for the widely held notion that children should wait 6 months, or longer, before pumping. I fully concede that there are those, like Wilf, who do just as well with MDI as with a pump. This requires every bit as much knowledge and discipline as using a pump. I resent the idea that for a given level of control, MDI is easier than pumping. Far too many people are sent home with too little knowledge.

    Chuck
     

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