Wednesday, October 6, 2010

Pumping at Diagnosis?

A recent discussion over at the Children With Diabetes forums got me thinking about whether I'd want to have the option to start insulin pumping at the time of my diagnosis.

Granted, I was diagnosed back in 1984 when pumping just wasn't mainstream like it is today. I spent the first 17 years of my D-Life on insulin injections, ranging from one or two a day to four or five, before the carb counting days when MDI became the norm.

Personally, I've always appreciated the fact that I spent considerable time on injections before getting the pump. To me, this allowed me to more appreciate the "freedom" and "flexibility" of an insulin pump as I specifically recall what it was like NOT being on the pump.

On that note, I have long-felt that newly-diagnosed Ds - whether children or teens or adults - should stay on injections for some decent length of time. Without any rationale for choosing this number, that period in my head has been 1 or 2 years. Why a year or two? Well, it just seems like a decent round number to me for someone to get past that "honeymooning phase" and allow them to learn the daily routines of a D-Life. No scientific basis for it.

In the recent CWD discussion where I offered my thoughts, many parents came back saying that I was somehow off basis for wanting to "reward" a child with a pump, or that I was somehow wanting to "punish" a person with some arcane treatment method rather than doing what is obviously a better option. Am I not giving newly-diagnosed teens and adults, or those parents of CWD, enough credit for learning the ropes? Is this equivalent of me saying that any new Type 1 should have to test their urine to appreciate blood meters?

The most laughable forum claims against my rationale was that I wasn't a parent, and just didn't know what it was like to have to inject a small child with a needle multiple times a day and listen to that child scream and cry as this happens. No, they are correct: I don't know what it's like to be a parent. But I have listened and watched enough YouTube videos and blog posts from these same parents who also hound on the fact that they must regularly stab their children with infusion sets and CGMs and that crying and screaming sounds the same to me. Either way, it sucks we and they must endure this lifestyle. But it is what it is. And you get used to it as life goes on. It's the parent who can't stomach the practice, and they are the ones who simply don't and will never understand what it personally means to have to endure these injections or pumping  - unless they are a Type 1 themselves.

If you are making the argument that pumping eliminates the "screaming and crying" of it all, then please don't promote that same screaming and crying when pushing for donations for ADA and JDRF walks. That just seems hypocritical to me.

Curious about what my mom might say on this topic, I asked her and here's what she said in regard to my having a pump at diagnosis:

"You did cry at first but really not a lot. When you were diagnosed and put in the hospital for three days, I stayed there with you. When Nurse Kathy came and taught you how to give yourself shots, she was really good at it. We just explained to you that now you would have to be like me and take these shots every day and that would make you feel better and not get sick. You were old enough to understand basic concepts. You had always seen me give myself shots so you didn't think that much of it I don't think. If you did, you never let me know it.

Although I think a pump is a wonderful way to manage a young child, I believe that every Type 1 at some point should be on shots for a few months to really learn the basics of management without a pump -- how to do it, how to figure stuff out without the pump to help you, things like that which you need to know. It's pretty amazing to talk to a room full of diabetics and see what they don't know. Just because you interact with a group of people on-line that are well-informed certainly doesn't mean that is the majority of the population, even the Type 1 population. What they don't know is amazing.

Many pediatricians will make newly diagnosed children be on shots for six months or a certain time period to learn these basics and that's not necessarily a bad thing, in my opinion. You need to know how to survive if you pump stops or whatever. But with a young child that is more to make the parents learn. So unless I was on a pump for a while already, putting you on a pump at diagnosis probably would not have been something I would have done. If I was on it already, I probably would have insisted because you were really too little to learn the info needed to be learned about shots yet and made you do shots later."

As far as her having a pump at diagnosis back in the late 50s, she relayed the following:

"I'm sure my mother would have chosen a pump as she was a great advocate for what was new and innovate for me, no matter what the cost.  If it was available, she got it for me."
(Thanks for sharing that, mom! Love you.)

To me, starting off on a pump at diagnosis just doesn't seem like the best idea. I personally prefer what I see as a way to allow a child or adult learn the ropes of diabetes and then have that option to later learn how "freeing" an insulin pump can be.

What do you think? I'd like to hear your thoughts, whether you be a Child With Diabetes Who Grew Up, an Adult Type 1, Type 2 who might not need a pump or injenction, or Parent of a CWD either grown up or not. No right or wrong anwer, just an interesting point to discuss and see what more in the DOC think about this topic! Thanks!

12 comments:

Mike said...

An interesting post and I think I pretty much agree with you. There's alot to get your head around at diagnosis - probably doubly so for parents of young dx children. The added demands of finely-tuning constant insulin delivery rates and ratios must surely add to the burden in a way that might make 2x or 4x shots seem easier to handle. Plus, for very young active toddlers there's the issue of the pump/cannula itself.

Conversely though, I recently read a forum post from a mother of a 2-year old who was struggling to adapt to MDI from a mixed-insulin regime and was finding the 0.5 unit limit a little clunky for her daughter's very small insulin requirements.

I suppose (as ever) it ought to be judged on a case-by-case basis.

M

The Chocolate Cheerio said...

I enjoyed this quite a bit.

I was diagnosed in Jan. 2000, and I started pumping in September 2000. I was thrilled about my pump when it arrived, but I think my parents and I were both thankful for the skills we were able to develop during the MDI period. When you're newly diagnosed, there is SO much information to absorb. It is hard enough to count carbs-let alone worry about fine-tuning basal rates and carb ratios, etc. If you jump straight into pumping, I feel like it would be incredibly easy to lose focus of the big picture and become much too dependent on the pump. You need to be able to manage non-electronically if the pump fails, and a few months of MDI are necessary to develop those skills. The only situation where I can see an immediate pump set-up being a good idea are when the parent or a sibling is already pumping- in that case, the learning curve is not a hurdle.

I am not a parent, but I hope the parents in that forum read your post and listen... I'm sure it must be challenging to watch your child give shots, but let's be honest- infusion sites suck, too. It all sucks. At the end of the day, the child is the one who is left dealing with the disease for the rest of his or her life, and his or her best interest and overall diabetes education needs to be taken into consideration when determining whether MDI should come before pumping.

Araby62 (a.k.a. Kathy) said...

This is a really good post. I never had a pump but the added factor of a medical device 24/7 might be a bit much for some newly dx'd PWD to live with. I just got a CGMS last year after 27 years of the D, and it was reveealing to realize how I felt about having "something" attached to me all the time and constantly worried (at first) about losing, recalibrating, etc. Plus it's a visible sign of the disease, which I hadn't really dealt with until that point. I got used to it and now feel almost dependent on having one...which brings yet another complication to the mix (being dependent on technology).

As Mike said, it's a case by case thing, and I think some parents are inclined to believe their way is the "best" way along with how to achieve all the other milestones in a young child's life (first time in a crib, etc.). What I like about MDI is having background insulin no matter what via long-acting shot 1x/day. The stories of occluded sites, kinked lines and "no delivery" alarms concern me enough to wonder if a pump would be worth it for me personally. But that's just my opinion, not something I'd tell another PWD to do!

Mark said...

Personally, I don't recommend new dx patients - whether young or adult - be immediately placed on a pump. To me, and this may sound ridiculous, it is dangerous for one to begin learning not only the disease itself, but an intricate medical device as well. Essentially, too much, too soon can lead to double trouble.

I'm also speaking as a fellow type 1 who was diagnosed over 33 years ago at the age of 7. In addition, I'm a parent and understand a child's pain. However, the more we understand how to properly care for this disease, the less painful it becomes.

Karen said...

I think that Chocolate Cheerio had it right - I don't know that I have a particular feeling about MDI vs pumps for the newly diagnosed, as it took me 16 years to even consider switching from injections and I liked the freedom of that therapy.

That being said, being able to correct for a BG of 123 is an IMMENSE thing for me now and I imagine the insulin needs of a small child makes a pump a big deal.

Reyna said...

Well, I have a different perspective as a mother of a type 1who was 3 years old at diagnosis, but not because of the strict food regimen nor the pain and/or crying from injections. It is simply easier to work in smaller units of insulin via a pump. Small children are extremely sensitive to insulin and working in tenths and hundredths of units of insulin helped alleviate the zig-zag highs and lows that we experienced in managing Joe. Yes, I know about diluted insulin and it's use for injections, however, why and to what end? If the family is knowledgeable, posesses the critical thinking skills, and is in need, then I feel it is fine. There is no one way to manage D. Not one way to eat, not one way to carb count, not one way to administer insulin. It simply is a matter of what works best for the patient and their lifestyle in my humble opinion. Joe was on injections for 3 months and then we started pumping...I am interested in what everyone else has to say. Great post Mike.

Meri said...

There is no blanket answer for this. We are all different. Our stories are different. Making someone stay on MDI for a year no matter what would be just wrong. Conversely, making them start a pump right out of the gate would be wrong too. One of my boys was diagnosed at 8 months old. Diluted insulin sucks. Giving 1/4 of a unit with that diluted insulin double sucks. A pump would have been a god send at diagnosis. He wouldn't wake up to eat. Hours and hours of trying to get him to wake was exhausting to say the least. If he had a pump, I would have had the option to turn it off for an hour.

I wholeheartedly agree that PWD's need time to learn MDI. Pumps break. Insurance runs out. It is so important to have the MDI experience under your belt. But again...everyone is not the same. Your diabetes may vary, right?

I'm sorry you had that experience with the parents of children with diabetes. I don't go to forums for the most part because it just isn't right to put someone down...ever. I know these parents are good people; they are passionate about their children's care. But the "my way or the highway" theology doesn't cut it in the DOC. I blog for support...TO support. To give love and understanding. I LOVE the blogging community, and I think I'll stick around these parts!

Sorry for the novel!

Danielle said...

My daughter was 23 months at dx. Half a unit (the smallest we could accurately measure) was often way too much insulin for my daughter. Our endo didn't "trust" diluted insulin. He wouldn't put her on a pump for at least 1 year. So I filled her diet with extra carbs just so I could measure out the insulin correctly and avoid lows. At night I couldn't correct unless she was over 350, because I couldn't safely give her a small enough dose for less. Those first few months were a pain... and it had nothing to do with the shots.

We moved a few months after dx. I found a new endo that said he would put her on a pump right away, and a couple weeks after that we were pumping. She had been diabetic for about 6 months at that point.

I do value what I learned on MDI. But I was also reading every T1 book I could get my hands on. I read the CWD forums like it was the bible. I learned A LOT in the first couple months. We were most definitely ready to be on the pump, regardless of what the 1st endo said. MDI just wasn't working for us and the 1st endo wasn't doing anything to help.

Basically, I don't think you can have one rule that works for every one. Some people probably should try out MDI for a while. For some, I don't think that's helpful.

Renata said...

I completely get the smaller doses for a little one. That is the rational side of this whole thing. However, most parents wish for a pump because they think it's easier. They also think that being on a strict diet and time table for MDI's is how it is for life.(which it isn't, it's only until you get use to counting/measuring..and so on). As for a crying child, uhm..they are going to cry no matter what. I would think, I don't know cuz mine don't pump, but I would think that an infusion set is much more painful than shots. I think shots just have a stigma that parents relate to and they project their feelings. I think the pump makes sense if it makes sense for the child. If a parent thinks the pump is their saviour...they've got bigger issues.

Wendy said...

As a parent, I have to agree that the micro doses make a HUGE difference. 1/4 of a unit had such an impact in those early days!!!! The pump virtually eliminated the HORRIBLE lows she had on shots.

That being said, however, I was overwhelmed with our pump transition. Learning new terminology, figuring out how to adjust settings, dealing with troubleshooting highs....it was pretty intense for me.

I honestly don't think **I** could have handled it at dx. We didn't start pumping for 18 months.

I guess each case is different. I don't think the pump SHOULDN'T be an option for a newly dx PWD, but it wouldn't have been right for us.

thisiscaleb said...

I thought your post would be a relatively simple debate over whether or not to start pumping at diagnosis. I am saddened to learn the reaction of others to your points. I did not take your comments that way at all. I can understand your perspective and take it for just that - your perspective. Not anything like you wish to punish anyone. That seems like a very strange reaction to me.

All that said, for us, I wish we walked out of the hospital with that pump. I see Mark's points too however - for some, that may simply be too much too soon. But not for me, and Caleb being on injections for all of three months does not translate into him appreciating the pump at all because he doesn't even remember it.

I don't really see the argument that people living with diabetes need to learn MDI. For example, Caleb was using NPH and Novolog before pumping. If he were ever to go off the pump, he would use Lantus and Novolog which more closely resembles pumping than his NPH/Novolog therapy. Diabetes is always changing that I don't see that particular need as a need really. It seems we are constantly having to learn something new.

So unless you become financially unable to pump or you choose to stop pumping, the need to learn MDi is for as long as your pump manufacturer can get you a replacement if yours should break down. In our case, we are lucky enough to have a backup PDM, so we don't even have that need.

I'm all for pumping right away if that's something the patient wants. But I also think it's something that will vary greatly from patient to patient.

Your mother sounds like a lovely, supportive and very intelligent woman. I enjoyed reading her comments very, very much.

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