My son was diagnosed with T1 almost five weeks ago. His BG levels were VERY high..his A1C was 13 now 11, he has been very dillignet with checking his levels and is getting quite good at deciding when/if he should back off a half point on insulin (i.e. take 6 units instead of 6.5 or move up to 7 if he has a baskeball game in two hours) I know we are SO new to this, but we are very much looking forward to getting the insulin pump. He can take up to six shots a day depending on what he eats and his levels. He is starting to just go hungry rather than take another shot!
My queston/concern is..WHAT ARE THE PROBLEMS/DRAWBACKS to look for when using a pump? I know it can't possible be the end-all-be-all answer. Any pointers or advice from those of you who have been doing the pump thing for awhile?
Thanks so much!
My son is quite thin and has had no issue. Having said that, the belly is not a site we use (he won't do shots there either). We use upper thighs, lower hip/top of the tush, and backs of the arms.
When he swims, the tush and the thigh areas are covered by his jammers and when he has it on his arm, we slip a terry wrist band up over the pod. We have found that covering it reduces the drag in the water. Sometimes if it is loose at all, the drag will cause it to get really loose or come off. So, simple solutions :-)
That's cool. I didn't know they let you do the omnipod anywhere else. I will have to look into that. My son won't let us do the shots anywhere but the arms or thighs. He is very hesitant to get the pump because he doesn't want something attached to him all the time, especially on the stomach. Thanks for the info.
I hear a lot about people hearing things like this in pump classes, and I don't know where it comes from. My son is thin, and wears his omnipods on his arms. He has had probably 4 - 5 fall off in 1.5 years of using them. I'm sure with how active he is he would have had at least that many, if not more, yanked out by the tubing. The adhesive of the pod is amazing for us at least. He doesn't react to it, and we have to use a solvent wipe to get it off after 2-3 days. I know that's not the case for everyone, but it is for us. He also forgets which arm it's on usually - and when he's really sweaty or going to be playing hard for a long time we just cover the pod with a Coban wrap, which is a stretchy tape that sticks only to itself, and that really helps.
Thanks. I was really hesitant to get the omnipod and now I feel like it is a possibility. I can't get my son to agree to the pump:( , so they won't even do it right now anyway. I wish I could find a local pump user so he could see it in action. Anyone live near Ashburn, VA?
Well we are in Laurel, Maryland - which would be an hour away if there were no beltway and no traffic . . .
The main drawback when first starting with the pump, was the site changes. Or I should say that was what worried us the most, initially. We used EMLA cream to numb the area at first and within a month or so, site changes were routine. There seems to be a lot of adjustments with the pump (she has five different basal settings throughout the day and the evening and overnight one changes quite a bit). And, I wish the pump were smaller. If, for some reason, she has an interruption in insulin absorption (bubbles in tubing or accidentally disconnects), her blood sugar will rise rapidly in a very short period of time. Other than that no drawbacks. I cannot imagine handling diabetes on MDI anymore.
My son also did a clinical trial in Dallas, Texas. There are several trials going on that attempt to stop the attack on the surviving islet cells which normally die out over a year or so after diagnosis. This keeps your son in the "honeymoon phase" where he makes at least part of his own insulin. In a study of long time diabetics that did not have as many of the severe side effects, this insulin, even though it must be supplemented, seemed to be protective and at least as important as keeping BG in a normal range.
We did the Protege Trial because there was more of a chance of his getting the drug vs. the placebo. We know that he received the drug because he had a reaction to the drug. This trial is not open but a similar Confirmatory Phase Three Trial called Defend 2 by Tolerx was announced in June and may still be open.
As April said, in most of these trials the initial drug dose must be administered by the first 100 days but the enrollment and pre-testing can take several weeks prior to that. Also, some trials do not want the complication of the flu shot. My son was diagnosed a few weeks after his flu shot (which seemed to put his immune system over the edge) so we had to wait 6 weeks before entering the trial.
So sorry to hear of your diagnosis. It's such a hard disease to get "used to," and things change so much - I have found online support key to what I know and I how I cope, so I'm glad to see you here!
So I agree with what many people have already said here about the benefits and drawbacks of using a pump. I think with a growing boy, the option of eating more, or snacking more is a key benefit of using a pump. We went to a picnic right after starting the pump and my son was so excited to just get to think about dessert AFTER eating his main meal - instead of trying to get everything counted and figured out before he got to eat anything.
He didn't want to pump for his first year after diagnosis, but there is no way he would go back to not pumping now. There is also no way he would go to a tubed pump. I'm pretty sure he'd still choose MDI over a tubed pump (although as a parent I'd still rather have any pump) I didn't push him, because I wanted him to be the one who decided, but every time he would complain about me having to give him extra shots for more food, I would point out that if he had a pump we would be pushing a button instead of giving a shot. I made it clear that I didn't care which way we did it, but if it bothered him that much then maybe we should at least try the pump to see if he liked it.
I think in making your choice you need to include him at whatever level you are comfortable including him. I don't see how old he is, but it looks like he's old enough to help decide if he's figuring out his insulin doses already.
Some thoughts on the systems I think are the most popular (and somewhat based on what I knew when we were making the decision a year and a half ago):
The animas has the smallest dosage available, which in the early stages and with younger kids, is definitely a pro.
Another issue is how long the pump assumes the insulin is in your system when you use it to help calculate dosages. The omnipod gets praise and criticism because it does it differently. Basically, if you bolus for your food, and then eat an hour later, the omnipod won't subtract the insulin you just took from the next dose. Other pumps at least let you know how much insulin is "on board" so you don't take too much. The omnipod assumes that if you have insulin on board, then you probably have food on board that will take care of the insulin. In reality somewhere in between is what we need, but there isn't a perfect way of calculating it.
Lastly, the minimed has it's own continual glucose monitor which "talks" to the pump to help manage everything together. If you go to their website you can see how it works. Unfortunately the people I know who have tried it don't like it. It has a larger insertion needle than other CGMs, only lasts 3 days (I think) so that you change it with the pump site, and it's not as accurate as the other cgms on the market. I do know a couple of people who like it, but most people I know don't use it even if they have it. The Omnipod and Animas both are supposed to be working with Dexcom to coordinate the CGM with them - but I would strongly encourage you not to choose a pump based on "upcoming developments." They usually are much farther away than they say they are, and they can even be totally gone if the FDA decides not to approve them, or if funding or agreements change.
Hi , my daughter is 12 and was diagnosed 5 months ago. She at first was adament that she did not want a pump, no tubing for her as she liked to wear tight fitting clothes. Now she is warming up to it and wants only the omnipod. I had also read that there were issue's with it including lots of pod failures, but my endo says they are much better now. We are also going to a pump class within the next 2 weeks. Looking forward to the freedom they will have with the pump, ie eating and not having to pull out a syringe everytime,especially when she is with her friends after school having pizza or sleepovers etc. I am slightly hesitant still because I know , like someone else mentioned if a site goes bad they can go into DKA more easily because there is no "background insulin" on board. I think its a great christmas present. Let us know how you make out.
My Daughter was doing shots for 6 months before she wanted to go on the pump. Yes there are some drawbacks to the pump, but for her, it has been so much more freeing and she doesn't feel as restricted with what time she eats and what she can eat. We have had a couple of incidents with high blood glucose due to some sort of malfunction. However, we figured them out and corrected them right away and then we knew what to look for if that same thing happened again. She was diagnosed at 8 years old and she will be 11 in February and has had the pump for 2 years. Up until about 6 months ago(I think when she started puberty) her A1C and BG were really good. Her last A1C was 8.4% so we just had to make adjustments to bring that down and it seems to be working really well. The pump has been the best thing for her and i'm so happy that my daughter has just a little bit more freedom than she did before. The pump, really, is the way to go. :)