Why MDI?

Since it seems that inquiring minds want to know why Brian and Connor do not pump, I thought I'd share our reasoning behind MDI. For now - subject to change at any time, because that's how things go with diabetes for our family. It's an ongoing process for us. We change; we adapt when the time is right.

1. Brian has been on MDI since he was 15. He is now 38. His AIC has been good, and he has no diabetes complications since he was diagnosed. He has no desire to pump. He is very cheap. He does not want to spend the money on a pump when he can achieve a good AIC with shots, and we have quite the stockpile of MDI supplies. If that stockpile ever depletes itself or if we max out of pocket expenses for a year and can get a pump at no cost, he might be willing to think about a pump. But he's one stubborn guy, so probably not even then. And I cannot make a grown man pump any more than I can get him to do anything else. He has to make that decision for himself. I do provide him with research articles to read if he wants to.

2. Connor was diagnosed at age 5. He is now almost 10. He has just now started the dawn phenomenon/growth hormone issue in the last 2 months, so this is something new for us. Even with that added curveball, his AIC was still holding steady at a decent number. His numbers since he started school have been in range all day, every day (with only one exception)! How about that?

He just went to his incredibly smart endo last Wednesday, who spent a lot of time with Connor. The endo even took a photo of Connor on his iPhone and used an application to make his eyeballs look like a dinosaur - it was cool! He commented to me that he enjoyed talking to such a smart lady. We had a wonderful relationship with our endo in the last state where we just moved from. Both endos have fully supported our decision to hold off pumping. In fact, they won't let a child pump against his/her will. The child is considered part of the decision making process. Even if Brian and I both were insistent that Connor pump, he still has a voice to say, "I don't want to."

I have talked to Connor about pumping and benefits, showed him photos of CWD of kids and their sites, had dummy pods on him, been around friends who patiently show him their own pumps and explain how it works to him, he goes to camp with kids who pump, doctors have talked to him. He knows what pumping is. He understands it and what the benefits are, but he still does not want a pump - for now. And I respect that. He trusts me, and we have a relationship that I would not want to jeapordize for a slight improvement in AIC. It's his diabetes for life; not mine. I know that he is very smart, and I think that he will at some point decide to pump. If he doesn't, that's okay with me too.

If Brian was a pumper, I think Connor would be too. It is very hard to convince your child to pump when his dad doesn't. He looks up to his dad and wants to be just like him. He watches as Brian tests his blood sugar, wears his medical ID, treats lows, gives himself insulin shots. Connor learns from watching. He's a visual learner, and he sees his dad on MDI every single day. And diabetes is very much in the background for Brian, and has not stopped him from doing anything - lettering in three sports in high school, getting married, having 2 kids, having a successful career, hiking, fishing, etc.

Connor also has extreme sensory issues. He cannot tolerate tags on the collar of his shirt. He doesn't like his feet wet. He has huge textural issues with food. He's sensitive to temperature, to sounds, to everything. He cannot even keep a bandaid on without picking at it. He chews on his nails and toenails. He comes home from school (or anywhere) and immediately takes off all his clothes except his boxers and puts on a very soft robe. He does not want anything attached to his body - even clothing (ack!). He does keep his medical ID bracelet on at all times. If we had started him pumping since he was first diagnosed, and it was part of diabetes from Day 1, I think he would have tolerated it. Unfortunately, that was not even an option for us because the hospital made you wait 6 months. I don't know if his sensory issues are related to his ADHD or something else entirely. My younger son is the one who was diagnosed with sensory processing disorder, but now it's Connor that seems to have more sensory issues as he gets older. We go to a sensory needs support group. I think I'm doing what I can for Connor. Sigh.

Another reason we don't have a pump is because of the added cost. We are swimming in bills, all the time. There are three of us with chronic, medical conditions in our family. Every time we go to the doctor, it's a specialist co-pay of $50. We are lucky enough to have good insurance, but it's still a huge expense for all the doctor appointments that we go to. Add in pharmacy co-pays for medications, and we have no extra money for a pump. We can barely afford MDI. My husband lost his job at the end of last year. We moved out of state for his new job, but I had to quit my job to move with our family. So - there went my income. Money is tight, without adding the cost of a pump and pump supplies. We have a stockpile of MDI supplies that will last us quite awhile. We feel fortunate and blessed despite money being tight, so please don't feel pity. It is what it is. We're together, and we're happy.

I see a lot of problems posted here about pumping. Kinked tubing, overnight DKA, difficult pump starts, nurses not knowing how to operate pumps, adhesive issues, broken pumps, stolen pumps, cracked pumps, bad customer service experiences, etc. Soooo....All this information seeps into my brain and makes me think that pumping is not all good all the time either. There are upsides and downsides of both IMO.

I can probably come up with some other reasons, and I might add those to my list. But...just so you know where we are and how we got to be MDIers. In case you wanted to know. :cwds:

 

Didn't know there had been inquiries, I'm on and off here, but fwiw we just moved back to MDI yesterday. That could change any minute. And I really like having the option of the pump, having it on the shelf, knowing how to use it, having used it enough to know what it's good for and what its limitations are. I even am considering signing up for the omnipod program so we have a second option.

And I love our CGM and wouldn't leave it behind for a million dollars, so we're still borged out.

We went to semi-untethered and now the pump break. For us, the basal insulin with the pump doesn't keep her even, she's up and down all the time (yes, we've consulted with CDE and endo and here and changed basal rates and upped basals and lowered basals -- nothing worked until we put Lantus back in) so the pump was a disadvantage for basals. Once she was on basal Lantus, then the only use for the pump was to give smaller increments (not a real issue because she's always happy to eat a few grapes to make up a difference and we overbolus anyway to combat spikes so she's accustomed to having to have a little snack sometimes) and being able to eat without a shot. She doesn't like shots. But she also really doesn't like the pump sets. She never complained about carrying the pump, but when given the option to carry it or reconnect or get a shot, she almost always chooses shots. So if she prefers shots, she is willing to take one whenever she eats, she has never yet gone "hmm, think I'll skip that food because I don't want a shot" or anything like that, and her bg is more even without it, we're going with this.

The two things that are tough: 1. We have to overbasal her during the day to get her enough basal at night, but we just adjust for that with I:C and snacks, and 2. I like using the pump for corrections. It's nice to be able to correct just a bit instead of wait until a full half unit is needed, nice to correct without an injection. But she actually needs far fewer corrections with Lantus in the mix, so while this is still a down side it's mitigated by the whole picture.

Glad what works for you works for you.

Oh, frankly, money is an issue for us, too. I have begun to wonder why we're spending hundreds on pump supplies when she's just as happy and healthy on shots. Thing is, that money could be used elsewhere. If, for example, shots are just as handy as the pump (for us) and we save $200 a month, that buys a lot of horseback lessons, finger paints, trips to the pool, camping trips, etc. It's not just a matter of me wanted to save the money to buy my candy bars and diet sodas. No, really, it's not. Really. Not just . . . .

 

we also have a kid with sensory issues so no pumping until he wants to, he has enough emotional stuff to deal with! A lot of people don't get that at all but a bandaid makes him want to hide, while getting blood all over the place lmao. He's recently had to be admitted for an allergic reaction, he was miserable and weak but it still took 4 nurses to hold him down for an iv and he spent most of his time at the hospital trying to figure out how to get it out. The school wants him to pump and does not get why we won't even try

 

I met a guy in his mid-30s from the U.S. in a restaurant here half a year ago. Of course as soon as I realized he had Type 1 (diagnosed at age 9) I had to open my mouth and start talking to him! He said he went on the pump for a short, short time. He said he just couldn't stand having something attached to him all the time. I was concerned about that with ~K when she started pumping. I'm just so glad she could tolerate it. But sometimes, when her site comes off and it's time for a bath, she'll start doing a happy dance and sing, "I'm free, I'm free, I'm free!" So I guess she's not completely okay with it... but she's a grazer and so sensitive to insulin at this point, so having the pump just makes it easier.

 

You should not have to explain to anyone why your child does not pump. This is supposed to be a forum for support not judgement.

My DD's A1C's went UP considerably with the pump as she took advantage of the freedom it offered. I think it's because of her overbolusing and having to chase the post low spikes. At her age, I do not have control of what buttons she pushes. She does use the Bolus Wizard, but then forgets to take into account the exercise she did hours ago.

She was on for a year, got sick of it, wanted back on after a year, and now wants to go off again after more than a year. We do not have to pay for the pump or supplies in Canada as we have government funding, yet lots of people choose MDI.

I do love that we can fine tune the nightly basal, especially after sports and exercise, but she is the one who has to wear it and live with the diabetes. I would never force her either way.

 

Rest assured that my mind was not "inquiring" as to why your son doesn't pump, so I hope that you didn't go to all that trouble for me.

It's wonderful that you are so confident in your decision.

 

To those of you who have responded to my post, I just wanted to let you know that I'm reading your responses. I'll have to write back when I have time later today. I have a deadline that I'm trying to make for a job application. Thanks for understanding!

 

I agree that you should not have to explain your decisions about your children's medical care to anyone.

That is amazing about being in range all day, every day. How often does he check?

 

Yes, I went to all this trouble for you. It was helpful for me to think about it anyway and put it in writing, so I don't regret my decision to post about it.

 

I love your post. It's so easy for us pumpers who have found it so helpful to forget it's not for everyone. Honestly, the ONLY reason I wanted a pump for dd was b/c her bs was all over the map and I just felt as much as I tried I couldn't get it together on mdi. Once on the pump we discovered other benefits but honestly, if her bs was stable on mdi there is no way I would have messed with that. If your kid is in range all day, brother, I wouldn't change a thing!!!

And our endo felt the exact same way regarding a child's choice of insulin delivery. If dd said NO, it wasn't going to happen. They don't believe in forcing a pump on a kid when mdi is a viable option. (I bribed her to try it for a month and coached her that she was to say she doesn't want a pump but she's willing to try it )

 

I resisted the pump for a long time as well. But Kathy was starting to whine about all the extra shots when we were on MDI - she wanted a snack, she had to do a shot - plus, she was still honeymooning, so smaller doses were difficult, especially using the insulin pens.

The endo recommended the pump for those reasons - easier insulin delivery, smaller increments, no shots. As long as Kathy liked having something attached to her, it worked well.

We left the pump for about 2 weeks when we were having pod problems. That was just long enough for her to remember how much she hated the shots and we went back on the pump. I will say her numbers were fantastic while on MDI and I almost hated to go back to the pump!

It is not ideal for everyone - I see advantages to both delivery systems. The good thing is that it is definitely a choice; you are not forced to do either one. Whatever works for the individual is the best way to go.

 

Well, you definitely need not have bothered, as I can assure you that I don't care and would not have given it another thought, but I'm glad you're happy that you did so! Sometimes we can become more confident in our decisions by writing them out in detail.

I agree that if your child is in range all day every day, I wouldn't mess with that either. You should share your tricks with respect to that because we're sure not meeting that benchmark!

 

When my daughter was diagnosed a friend of hers who's also diabetic came to visit her in the hospital. He showed her his pump and from that moment on that was her goal, to get a pump.

And she did everything she needed to do and had one in 6 months. And she loves it.

But her friend went back to MDI about the same time she got her pump and is much happier. He hated having something attached to him all the time and also had a lot of problems getting the tubing inserted correctly, he's quite thin.

They both have good control so I say whatever works best for you.

 

I think it's great that you took the time to post this. I wonder sometimes if people new (or not new, really) to the forum feel pressure to pump--as though it is a foregone conclusion that they will pump one day.

I think if we were to switch back to MDI for more than a day or two when Nathan gets tired of the pump I would HATE having to write everything down again. Being able to download the pump and print out all of the information I could want has made me very lazy.

 

Thanks for posting this. I'm nosy, I love to know why you guys pick the method you do (and you may point out something I haven't even considered!)

For us, I let Bobby have ultimate veto power on D stuff - it's his body, his life. I started out all hopped up on getting a pump asap, but he balked at the idea of having something constantly attached. I made sure he at least checked it out online, ordered sample, etc - and then I shut up about it.

After he saw and talked to pumpers at school, he changed his mind and wanted to give pumping a try, so we switched gears and went for a pump.

My own two cents worth - I LOVE the pump, it is so much more convenient for us than MDI.

But it's easy for me right now to operate this decision in a vacuum and just defer to Bobby's wishes, since currently our insurance covers costs either way. Obviously if that changes, that could impact what method we use.

I don't care how anyone else does it, to each his own. But I do like knowing how other people do it and why.

 

My son is 13 and we have only been at this for almost nine months. He is not interested in the pump at all at this point. I think it would be a constant reminder that he has diabetes. I stopped asking him if he was interested, after all, he is the one who would have to wear it. I too have been alarmed by all the posts with problems with tubing getting kinked, etc...I was actually kinda glad that ds is MDI and I didn't need to deal with that!

 

I have always loved the forums to see how other families manage things. Over the years I have read posts and learned some great ideas of how others handle different situations, including Karla; sometimes I read posts and think the poster is nuts...but at the end of the day each family has to decide what works for them, how tight a range, how many lows are acceptable, daily meals & snacks, etc. I honestly don't care what anyone else thinks of how we manage in our family, certainly would never feel compelled to explain.

So if the OP wants to use MDI for her family--great. When others have questions/concerns about this regimen, good to have this experience on the forums to share. There are some advantages of pumping/CGM use that Karla is always willing to share based on her experience too. Not sure what started this but honestly--this attack of Karla is ridiculous and detracts from the value of the forums.

 

Yep! Totally ridiculous!

Thanks for the info, Amy. I personally have wondered why you guys chose MDI. We've never done MDI so for me it's totally unknown territory should the pump decide to stop working and we have to do MDI.

 

where are the applause. I'm also not sure where this all came from but I've also never seen Karla pushing the pump. Now, CGM...I KNOW she's getting kickbacks on that. LOL.

I think everyone here makes whatever choice works for them. Pumping has drawbacks but MDI has drawbacks. There really is no one perfect system. If there was we'd ALL be doing it. Many times you have to put up with something you don't like to get something you do. That works both ways.

 

Wow, you've never done mdi? That's remarkable. I've heard of some rare people leaving the hospital with a pump, but most have to fight for a pump before 6 months to a year and sometimes even after.

Let me tell you, mdi has some advantages. One is the one I struggled to give up, which is this: When you need a shot you take it, but the rest of the time, you can almost forget you have D. Not really, b/c of lows and testing, etc., but almost, in a way you really can't with a pump. Having something attached 24/7 was my initial reluctance. Of course, it turns out that kids get used to that so quick, they forget about it, but it is an outward sign and certainly other people notice it. dd never minded shots so she wasn't keen on changing. I ONLY decided for it b/c I thought I could better stabalize bs. It turned out though that the convinience and the no shots are the biggest plusses for us and stabalizing bs is a never ending battle. Ah well.

All in all I also recommended learning about insulin pumps and what they can offer. I really think it is a big part of D management to learn about new D technology. How else are you going to learn that you don't have to wake a kid to pee on a stick in the middle of the night to check ketones? that doesn't mean you have to use or buy into the new tech but you do have to look into it. When a cure comes out, I'll read about it here first.