Do you wish you'd started pumping at dx?

No, that would have been too much for us.

We started out on NPH and Regular and a fixed meal plan. I actually think that's what we needed for the first FEW weeks (well, I would change the regular to Novolog). But after 6-8 weeks I wish we could have moved to Novolog/Lantus. We had to wait six months for that. Then we waited another year to pump (that was our decision). I wish I had felt more comfortable with the idea of pumping sooner and only done MDI a month or so.

 

Although I am glad we didn't start with a pump (it really freaked my dd out in the beginning, took a while to get her used to the idea) I personally feel that families should be given both options at diagnosis. They told us we had to wait 6 months, and that sounded like forever at diagnosis. Then at four months the CDE said we were ready, and the endo came in and was like . . . "It hasn't been 6 months." So I asked for reasons why it had to be 6 months if we were ready now and she didn't have any, so she consented. The only reason I felt we learned better about insulin in the beginning on MDI is that we weren't distracted by figuring out the pump, it had nothing to do with how the insulin behaves from a pump or an injection. Our first 3 pumps had issues -- no prime alerts, etc, so it would have frazzled me a lot at diagnosis to have to figure that all out, not to mention she ripped pump sites off almost daily, in addition to learning the carb counting, etc. I think it's one of those YDMV things. If my daughter had wanted it at diagnosis, or been a baby, or a teenager, I would have pushed pretty hard to get it at diagnosis. As it is, I had to convince her at 6 months. She LOVES it now, but anything new is a challenge with her.

 

Exactly correct: everyones' diabetes may and very likely does vary. Same as the thoughts on how they manage it and parent. As noted before, I think being on injections first is an important part of D-Management because it helps you know what it's like to be on shots and then not have to be. I don't necessarily see this as a "reward" as some have dubbed it, like a gold star you get for completing your homework or eating your vegetables. Rather, I view it as a way to provide some real, tangible proof of what it was like before/without pumping. This actually aids many in being on a pump - recalling what they'd have to do otherwise, and gives some more appreciation for this insulin-delivery method they're connected to all the time.

Why two years? No reason. Just seems like a good round number to me and I've got no rationale for choosing it. At this point in my life based on what I know, how I've managed my own diabetes and observed others manage theirs, I'd venture to say that same rationale would apply to the newly-diagnosed of any age - even those in high school or beyond. Sure, they are more capable of learning it quickly but I still think the base knowledge of insulin over extended time helps solidify one's ability to know how insulin works in his or her body.

I don't buy the argument that it's just better control, because there are enough individuals out there (young and old, newly-diagnosed and many many older ones) who have and do successfully keep their BGs and A1Cs at great levels. But I wouldn't dictate this MDI method to anyone, just as I wouldn't mandate pump use as that individual may not want or like it. Insurers do use this as justification for denying Pump and CGM claims, saying you can "do fine without it." I don't like that, and don't believe an insurance company is in a position to trump what my doctor and I've decided is best for MY health or any patient.

You'd be correct in pointing out that I've never held down a child of any age and had to listen to the cries of them being stabbed multiple times a day. I have not, and I'm not a parent. I have watched videos - fundraising Walk videos, as it most often seems to be - showing this life-sustaining "cruelty." I've seen those same videos of parents having to stab their children every 2 or 3 days with a pump infusion set, and heard parents describe the horror of doing that. I don't know what it's like. And yes, every few days versus every few hours is a solid and appealing argument. Personally, I think it's a matter of perspective. I wish none of it was required, but it is. So we do what we need to in order to live.

My personal observation is that any of us Adults With Diabetes who were diagnosed as children are as strong as we are because of our parents who lived as our human pancreases. Most of these parents are the most determined, strong, and commendable people I've had the experience of knowing. They'd do anything for their kids, and that's very apparent. So my personal view isn't meant to pass judgement on anyone's parenting or D-Management as it may have been taken - this is simply my view on would I have wanted a pump back in 84 when I was diagnosed. As was the Original Poster's point of curiosity. Use this for what you will.

To me, it's just a matter of learning to appreciate what we have. This is one reason why I took a pump break recently for nine months - to not only help my body and pump sites heal, but to also get a glimpse of that MDI world and re-appreciate that lovely pump by my waist. My five months on MDI led to a whole percentage point drop. But in going back on it in early September, I was thrilled at this sense of "freedom" from not having to stab myself. It helped me appreciate how wonderful this device is, while also staying mindful that if the technology breaks or something happens, I can manage my diabetes consistently on injenctions as I've done in the past.

But hey, that may change when I become a parent. Hopefully I'll never have to endure my greatest fear, but I'm prepared (OMG - prepared????) for whatever's needed. Having to hold my young child down for multiple injenctions (or just 2, if that pre-MDI injenction route still exists) a day), I could change my tune. Who knows what tomorrow brings.... but we can always hope for something better. Like a cure.

Now, with a great 97 mg/dL and a bowl of cheerios for breakfast, I'm off to disconnect from my wonderful pump and get ready for work. And I'm going to make a plan to call my mom today, to specifically thank her for giving my daily injections as she did for so many years after my diagnosis at age 5. I wouldn't be here without her. Moms (and any parent of a CWD) rock!

 

I have refrained from responding to this thread because we only did shots for 1 month after dx while waiting for our pump and I wasn't sure if our experience was really what the OP was after. Now 3-1/2 years later, I don't believe doing MDI vs Pump would make any difference. I am fully confident that I can switch back to shots if we would need to. Also, my son accepted the pump as just the next step in diabetes management - he didn't know any different. His pump broke and we did shots for 1 day and he was so ready to go back once his pump came!​

I learned to manage his diabetes with a pump just like you guys learned to manage with MDI. It was the right choice for us. When we started pumping, his TDD was around 1.5-2 units and he got maybe 0.5 units per meal. He wouldn't get any insulin from 12-5 everyday. That not something that would have been easy to do on MDI (possible - probably but not easy).​

Honestly, I don't think I was any more overwhelmed with the pump than I would have been with anything related to diabetes at that time. Learning anything new is hard. I will say that we had a great diabetes team and I had access to a lot of classes after the initial pump start. ​

I think at this point in time, you need to do what you feel works best for your family. There is no right or wrong and insurance shouldn't have a say - it should be up to the doctor's recommendation.​

 

I really think you're not giving enough credit to the intelligence of newly diagnosed teenagers, young adults, and families.

I agree with Jules12 in that everyone needs to do what is right for their family. I'm so very grateful that we had the opportunity for my son to have the insulin pump. I know that's not the case in other countries and for other families without health insurance.

 

Paul D

There's another reason why immediately going on a pump and avoiding shots from the get go is a poor idea. Pumps and inserts can fail or partially fail; if this occurs (and it has to us several times), and basal delivery is interrupted, a child's blood sugars can rise 400/500 within a couple of hours and ketoacidosis will quickly follow. If this happens then you must have a supply of Novolog (or equivalent) on hand and give a correction shot. If you can't find out what the pump problem is, then you have to inject a shot of Lantus (or equivalent long acting insulin) and continue this regime until the pump issue is resolved. (If this, say, happened on a Friday night, a replacement pump isn't likely to arrive until the following Tuesday morning.) Secondly, you have to be able to move to shots virtually on autopilot; you can't do this effectively without having had the experience of giving shots over several months first.

We keep a current supply of Lantus and Novolog pen insulin in our refrigerator at home; at my son's school in case there is a concurrent lock down and pump failure (a very tiny probability but it's still advisable); and we always take backup Lantus & pen Novolog when we travel.

With a Type 1 child "Expect the unexpected and always be prepared for it".

 

Well, in slightly less dramatic tones, the issue of being able to do injections in the event of a pump failure has been addressed by many of the prior posters.

In the 6 years that we've been pumping we've only had to go back on injections twice, and in each instance it was for a very brief time. The issue, I believe, boils down to HOW parents are trained, and ditching the "progressive" idea that dx is always followed by injection therapy, and then pumping.

Oh, and welcome, btw, I see this is your fist post on CWD.

 

We've always been on the pump, never MDI, but we have learned how to do shots in case of an emergency. We have had to do shots of fast-acting during a couple of ketone episodes and that was fine.

We have Novorapid and Insulatard (NPH) in the fridge. Have yet to use the Insulatard.

 

So, should we forgo the meters too and have people newly diagnosed use the urine sticks and match the color of the stick to a chart and guess where their blood sugar is? Have everyone go on NPH, so they can appreciate Lantus? Everyone should use Ketone urine sticks, instead of meters, so they appreciate the ketone meter more? Heck, why don't we make em' all suffer for a week in DKA so they all really know what its like before insulin was discovered??

Its not about appreciation, those diagnosed today shouldn't have to live through what many did years ago, thats what we have medical advancement. They should have the choice to pump or do MDI. They should also have the option to switch at anytime they please. Like Paula said, even though she started out pumping, they've learned injections.

I'm thankful for medical advances and the fact that my child doesn't have to go through what many went through years ago, from suffering at diagnosis, to using the urine glucose strips, to even the first meters. I thank God every day for medical advancements including better meters, pumps and insulins, both for MDI and pumping.

 

Welcome to CWD, Paul.

My child has been pumping for 4.5 years. We had ONE situation where we had to do lantus. There is only ONE day where medtronic can not give you a pump the next morning and that is Sunday (after midnight saturday) any other day, you have a pump by 10 am the next day. Pump insertions can fail at anytime.. pumps can malfunction at anytime. The person pumping, whether newly diagnosed or a a person that has been diagnosed for 10 years, needs to be trained, regardless.

 

Just because you don't give injections on a daily basis, or in our case have not been required to do it because of being given the choice of the pump, does not mean you are incapable of giving injections. We have been on the pump since diagnosis and have had to give several injections and have done it successfully. We also always have a vial of levemir on hand, and have a very helpful endo and cde who we know we can call in the event of having a pump malfunction to get proper dosages. If my son's pump were to malfunction I don't feel it would be impending doom. We would do what we needed to do and move on.

I also don't feel that you need to do MDI to "appreciate" having the luxury of the pump.

 

Well said - and I hope Paul and Michael read this! It isn't about getting comfortable and having to completely readjust to a new way of learning; it IS about having enough training to adapt to all of the situations that T1 throws at us...be it a failed pump (we have had 1), or a bad vial of Lantus (we have had 4!!!), or having a bad site, or not having a needle, or anything else. How are parents any more ill equipped with troubleshooting a pump as with injecting Lantus under the skin and getting a raised bump (two times for us- a few posts on here by others as well), or getting a gusher when injecting Novolog at a restaurant, or trying to decide of I should round up or down for 2.45 units of Novolog.

The point I am trying to make is that there are just as many variables to MDI as there are to Pumping. A family SHOULD be given the option to decide at diagnosis.

 

Well, aside from maybe having a little panic attack if this happened right after dx, this is no different from pump failure any other time. Hell, we had an occlusion at 3:30 this morning, but I didn't hear the alarm until 5:45. No 400-500, no DKA. I put on a new one and went on with the day. And every pumper should have a backup supply of insulin and syringes.

It took me maybe 3 times before I had injections down. You stick the needle in and push the plunger. It's not rocket science.

 

If this is the approach someone is taking to MDI, then they're probably better off pumping..

 

I guess you couldn't tell I was talking about the physical act of giving injections. I certainly wouldn't have to go back for months of training to give a shot in case of pump failure (that was the post I responded to - context, you know?).

Need I remind you I was using Levemir, NPH, Humalog, and Regular? I know there's way more involved. But there's no way I would agree that 2 years, or even 2 months of injections is necessary to "appreciate the luxury" or whatever other reasons people are giving for doing MDI before pumping.

ETA: To clarify my "whatever other reasons" statement - I'm referring to the blanket statements that imply that if you don't do shots first, you'll be up the creek later (as if we can't learn), or that pumping is some great honor to be bestowed only upon those who've "suffered" for years (really? years?) through MDI.

 

Not very nice.

Especially since many of her 4000+ posts have noted her extensive experience with a complex MDI regime.

 

several months first -
This has really been interesting reading what other people have to say what is the only effective way for people and families to manage type 1 diabetes when deciding to introduce an insulin pump.

Of course you have to be prepared for emergencies - any kind of emergencies. This is part of a good plan. You can do that with a start of insulin pumping right away.

Thank goodness some of you were not on some board that made a judgment whether or not others of us received an insulin pump right away. No truer words were ever spoken - YDMV (your diabetes may vary.)

 

Look, pumps and injections are just two different types of insulin delivery systems. There are distinct advantages and disadvantages to each, depending on the age of the child and a variety of family circumstances.

The inference in far too many posts in this thread is that MDI is a simplistic or an archaic way of managing the D. That's just silly. An MDI regimen can be as sophisticated as most pumping regimens, with results in terms of glycemic control and A1Cs that rival what can be achieved with pumping.

In answer to the OP's original question - no, I don't wish we'd started with pumping. MDI has always been the preferred choice for us.

But we were offered the choice of starting on either a pump or MDI when DD was diagnosed, and that's how it should be.. :cwds:

 

I haven't gone back over what I posted but if I implied that, I didn't mean to. Funny - I came away with the opposite feel that people think I wouldn't know how to do some things because my son started with a pump. I have a lot of respect for people who achieve awesome control through MDI or pump which is probably most of the families who post on this board.

To me, it is important that people have a choice and I will say it again - what is best for your family is what is best - it doesn't really matter what someone else is doing.

 

Amen.. :cwds: