The Pump and coping...

[AndreLaplume]

Sorry for the length! Our 7 seven year was Dx'd a year, type 1, is doing well; fairly well controlled. Our docs are not brow beating on where her sugar levels should be.....they'd like to see it under 240 with A1Cs less than 8 but explained that at age 7 thats difficult due to biology. Also, they claim, for reasons not known, the disease does not start to take a toll until puberty hits. For now we should be forming good habits and passing them along to my daughter and assisting her to be independent. She tests herself and wants to try injections. We give the shots and test as well. A1Cs are around 7 (6.9/7.2/7.9). We had our first hospital incident a few months back when we tried an I-PORT that got kinked and did not deliver insulin over night…a setback.

My wife has not coped emotionally well with the disease. It eats her up inside. Over the last 3 months she has become more assertive, controlling and confident in her actions; though emotions still get the best of her. She is handling things great IMO, on the outside anyway. My concerns are more for my wife than my daughter. I can only hope with appropriate control and good health, my wife will one day believe our daughter will live a normal, full *uncomplicated* life. I try my best to be stoic and optimistic. I am more concerned with control than the docs are. I know evidence of good b/s control will provide my wife a better emotional outlook. That’s roughly where we are at.

At diabetes camp the topic of a pump came up again; my daughter wants one. I am a techie guy and have no fear of operating it. My wife knows its best but is a basket case about it. We ordered a Medtronic 522. I am not saying we will use immediately. The timing is not great as school is starting but perhaps over the winter recess we could move to it. For now we could play with it and get comfortable with it.

Here are the main issues:

1) Our daughter attends in a small private school with no nurse. On the plus side, with less than 100 students, my daughter is more likely (IMO) to be kept an eye than if she were at the big public school. My wife is able to get there for lunch each day to check her b/g and administer insulin if needed. This should be a 5 minute affair but Mom stays the whole lunch to be sure she actually eats the carbs. How do other parents handle lunch with their 7 -10 year-olds. How about school in general for that matter? Does the pump make any of this easier at this age?

2) I'm the one who programs everything; my wife has never been into technology so it’s intimidating. I have no fear of the pump and I figure my wife will learn quickly. For those techno-challenged, what’s your experience?

3) There is also the fear of getting my daughter adjusted correctly while avoiding highs/lows in those initial days on the pump. Experiences?

4) There is also the fear of the tube kinking, how and when to take the pump off (sports, bathing etc) and the perceived aggravation of how a 7 year old should wear the thing. How does a little girl best wear this thing with a skirt and/or pants and button down shirt?

5) Another fear, will my girl tire of being connected to the pump 24/7.

5) Finally: he said / she said issues. My wife hears 10 positives which get obliterated and forgotten by one negative. There are a lot of ignorant people out there. We have gotten better at ignoring those who you can tell are simply uninformed or obviously have issues from non-control. It’s a bit more difficult though when it comes to things like the pump and you here stories about it kinking, the canula not going in or falling off all the time, needing to have the needles frozen before insertion, needing extra goo to insure the thing sticks for 3 days, causing weight gain, etc. etc. I’d imagine there is a short list of things to be careful of…what are they?

I know this is long and in general things are going well I imagine a lot of this all sounds familar. Any comments that might allay some fears would really be appreciated.

[Erin]

Hi! I'm not on a pump, so as far as that goes I have limited advice. I know that some people "insure" against pump problems (kinked lines etc etc) by doing the "untethered" approach. It seems some folks take 1/2 of their basal dose as lantus, with the other 1/2 coming from the pump. The pro's of this being if there was a problem where the pump stopped working, or if your daughter was to take it off for a long period of time (like for swimming) there would still be some background insulin in her system... so she wouldn't go too high. The con's being, there would still be a daily injection in addition to the pump. I think when I make the switch to pumping (I'm holding out for cgms being covered by insurance) I'll probably do this.

I think you have an excellent idea in waiting until winter recess to get your daughter sorted on the pump... It might even be a good idea to wait until the summer, then your wife and daughter would have 2 whole months to adjust to the thing before dealing with school.

As far as coping... it is hard, but it might make your wife feel better to know that lots of us who were diagnosed as kids are doing quite well. I was diagnosed when I was 8 years old, and my mom was a bit frantic about the whole thing as well (she hid it from me pretty successfully... I only found out recently what a nervous wreck she was). I had lots of A1c's that were higher than your daughters. I remember being in the 10's for a while. The technology back then was just not what it is today... getting into the 7's without tons of lows was pretty difficult.

I'm still complication free, and as an adult I get A1c's that are around 7. My endocrinologist often comments on how very "normal" i am. :) I've also graduated high school (with honors), played a varsity sport, gone to college, partied like a college student, studied abroad, gone to graduate school, lived on my own, made wonderful friends, traveled extensively, and now I've got a good job and a wonderful partner. Diabetes won't hold your daughter back... she can and will do everything she sets her mind to. You and your wife are seeing to that by laying the groundwork for independence later in life. Good Job.

-Erin

[solox316]

Hi there,

Sounds like you have very many valid concerns about starting your little girl on a pump. I would also agree that a break would be a good time to start on the pump, as adjusting to a new school year is hard enough to begin with.

I am a teacher, in a public elementary school of 700 kids, no nurse. Our secretary and one full time paraprofressional went through extensive training through the intermediate school district. The para checked up on her many times throughout the day, including snack time, gym, lunch, recess, etc. I am confident that your school will do everything you would hope for to make sure your daughter is well taken care of. And although it is not the responsibility of the teacher to provide care, I think you will find most teachers are very willing to learn about diabetes and will keep a keen eye open.

I help direct a diabetes camp in the summer and it is amazing how quickly the young diabetics take over their control of counting carbs and operating their pump, with supervision of course.

I know I may not have answered your specific questions, but hopefully gave you some comfort when preparing for the school year.

[Bijou]

I'll awsner the questions that I know of with my experience. :)



1) How do other parents handle lunch with their 7 -10 year-olds. How about school in general for that matter? Does the pump make any of this easier at this age?


My daughter isn't diabetic, but we are very afraid that she will be soon. What we have done is teach her everything that I do when I use my pump, or if someone isn't diabetic in the family act as if you were.

As for making it easier, yes and no. Yes in the fact that she will not have to deal with needles for injections on a daily basis. No in the fact that unless the user behind the pump (child or parent) understands the basics of insulin managment, no pump will teach you that.

As a side note, one nice thing with the pump is if you decide that you need 10 units and then after you start the bolus you relaize it was too much, you can suspend it to stop. Unlike with the needles, you shoot too much you have to make sure that you have carbs near by.



2) I'm the one who programs everything; my wife has never been into technology so it’s intimidating. I have no fear of the pump and I figure my wife will learn quickly. For those techno-challenged, what’s your experience?


Pumps can be as simple or complex as you want. I'm a techno-geek and can play with all the bells and whistles. But you can just learn how to bolus and set your basil and you are good to go. Learn your carb raito and sensitivy and you are also good to go.


3) There is also the fear of getting my daughter adjusted correctly while avoiding highs/lows in those initial days on the pump. Experiences?


My first week on the pump was very good. I had a track record on how much insulin I used before hand, good advise from the doctor.

I was a bit high for the first week (mainly cause i hate low BGs) then I was a bit low and I leveled out in a bout 2 weeks. All in all, as long as you are tesing BGs more often; it makes it much easier and safer.


4) There is also the fear of the tube kinking, how and when to take the pump off (sports, bathing etc) and the perceived aggravation of how a 7 year old should wear the thing. How does a little girl best wear this thing with a skirt and/or pants and button down shirt?


As for the tub kinking, I've never had an issue with that happening. The only issue I have had is with the infusion site ripping out, which you know when that happens and you'll know it right away so you can fix it.

As for where to where it? There are alot of options and add-ons that will assist in your daughter to wear it. If there is nothing to clip it on then there are undergarment belts that can hold it too.



5) Another fear, will my girl tire of being connected to the pump 24/7.


Getting used to wearing it during the day is easy to adapt, it does get in the way once in a while. As for sleeping at night, it's very annoying for the first few weeks, but now I don't notice it unless I have a "sensitive" infusion set.


5) Finally: he said / she said issues. My wife hears 10 positives which get obliterated and forgotten by one negative. There are a lot of ignorant people out there. We have gotten better at ignoring those who you can tell are simply uninformed or obviously have issues from non-control. It’s a bit more difficult though when it comes to things like the pump and you here stories about it kinking, the canula not going in or falling off all the time, needing to have the needles frozen before insertion, needing extra goo to insure the thing sticks for 3 days, causing weight gain, etc. etc. I’d imagine there is a short list of things to be careful of…what are they?


Extra goo? I've only had issues when I go swimming, IV 3000 takes care of that. Frozen needle? Never heard of that. Canula not going in? Had that issue twice, and that is when I didn't use the inserter device. Never had an issue with kinking.

Things that I have learned over the many years of pumping.. most of the issues that I have had are because I wasn't prepared. I didn't have a spare battery on me. Didn't check my volume and ran out of insulin and didn't have my fill kit. All in all, i have NEVER had an actual pump malfunction that caused any health issues.

I have found that the "quirks" with the pump FAR outweighs the benifits. Also, I do know that you can lock up the pump so that you daughter can't mess with it as well until she fully understands its abilities.

I'm happy to awsner any questions you may have! :)

[cheryl]

My first set of advice on the pump, don't listen to the mumbo jumbo they tell you on the phone about the quicksets or anything, give yourself a piece of mind and order the sure t's it is supposed to made for kids anyway, it is a needle so no pressure at all to worry about kinking, one less fear to think about.....so then you can concentrate on getting her worked out...

Now with the pump it depends some people go on it and start off great, and others(like me) have a bumpy start....but it is well worth it, it really is, I feel like I know so much more about my body and the way it works with the pump....then with two different insulins....I started on the quicksets as my sets, and see the fear of a kink really had me stressed so if I'd see if I was high, it freaked me out, then I did get some kinks, I did the sure t's and really liked them a lot I also use sils right now, which they are doing well too, so when there is no fear of a kink issue, then it is so much easier to focus on the task at hand which is getting all your rates figured out.....That is why I suggest the sure t's because there is no fear of a kink at all....just you have to be faithful and change it out every three days, now your supposed to with all sets, but I have personally went four days on the other one's but sure t's you must change out every three days....

Good luck to you and your daughter, and your wife,

Cheryl

[RobiJo]

Hello folks, I'm new to the site, but not to diabetes.
You should definately send your daughter to camp! I've been involved with them for years and wouldn't be who I am today without them. Typically speaking kids handle dealing with their diabetes better than their parents do (at least until they hit junior high). Good Luck!

[AndreLaplume]

Any insight would be helpfull. Thanks to all.

[kel4han]

Andre...Wow, I am totally understanding of your concerns. I was diagnosed type 1 just 9months before my daughter was at the age of 6. It has been 8months since her diagnosis. We put her on the 522 back in June after 6months of injections. Your wife sounds alot like me, I thought I had coped with the emotions, but every week I seem to have meltdowns, though I am much more confident in controlling numbers.

First, let me recommend childrenwithdiabetes.com it is an immense wealth of knowledge (forums) from the parents themselves.

Lunchtime- when on injections, we would have to bolus after lunch at school to count carbs. If she needed a correction before lunch, this made lunch into a 2 shot thing. Not fun for a 6yr old. Now with her pump I have the nurse give her half carbs up front, and half after. As your child ages, I would assume you are safe to bolus upfront before lunch since they typically eat what they are given. We always bolus up front at home, and I am sure this helps tremendously as far as post prandial spikes. I love the pump for this reason!

Programming is simple, for anyone. Its simple as a remote control for the TV, for an adult that is.

Adjusting to the pump for me (my own pump) was simple. Not one problem. For Maddison, I was checking her BS every 2 hours to get the basals set. I took time off work to do so, it was summertime which made it easier. I was able to hold off her breakfast to check basal settings, hold off lunch, hold off snacking and dinner to get things right. We actually had such a hard time transitioning her that I thought the pump was broken. We took a few days off. It will be very hard for mom. I thought I was losing my mind those 8weeks. I had a log, and I logged everything, EVERYTHING for 8weeks. I used index cards to see basal rates, how I adjusted them and times of day etc. Highs were no different than on MDI, except the pump keeps track of Insulin that is active, which is a huge help.

We have never had tube kinking, but we have had bent cannulas (the part that stays under the skin) and you will know becuase of extreme highs, or numbers that dont make sense. It is easily corrected. You learn what works, where NOT to put the site, etc. My daughter wears a pump pack (like a hip fanny pack) when she wears a dress. It just takes one little twist to disconnect from the pump. Simple. My daughter loved her pump from the beginning. Now, she is having some issues, and hates it. I think though, that this stems from hatred of the disease, not the pump itself. She never minded the site changes, never had a painful one. We dont use any numbing gadgets or anything. I would check out the children with diabetes forums, the moms there will have alot better info for you, I am having a hard time finding my words right now.......but in whole I love her pump, and mine. Its great to be able to just eat and graze, snack all day without taking 10 injections to do so. You feel a better sense of normalcy as far as eating is concerned.

[BriOnH]

May I ask what camp you went to? I was just working (volunteering) at one in Kings Canyon National Park. I had coffee with a dad that had these exact same concerns, but he had a 2 yo diabetic boy.

[HollyB]

Hi,

If you decide against the pump for now, I highly recommend considering when your daughter approaches puberty. Blood sugars are quite hard to control then and having a freer lifestyle becomes a big issue, and both are much easier to manage with a pump.

There are some issues with a pump that you don't get with injections. There are potential problems with the sets (my anxiety area) -- you get to know which set work best for your child. My son prefers the straight-in sets but when he really needs to rely on his set -- say during an overnight school trip -- he uses the angled set that seems to work no matter what. We have had problems with sets not sticking -- this seems to have something to do with your skin chemistry as many people don't need "extra goo." But a quick swipe with a wipe called Skin Tac solved the problem, and the sets now generally last well for the full three days.

You have also raised some concerns that are NOT usually a problem.

Complexity? I have never mastered programming our VCR. The pump is much easier, with very careful menus and double-checks that lead you through each step.

Weight? My understanding is the only kids who gain excess weight on a pump are those who overeat (same as normal life) -- maybe particularly kids who've had food restrictions for a good part of their life and now feel they can "go crazy" cause they have a pump. For most people, a pump is an aid to maintaining normal weight because you don't have to "feed the insulin" so often -- eg load up on food during exercise just to cover the Lantus you took in the morning. You can adjust your insulin to cover your food and exercise, rather than vice-versa.

As for being hooked up 24/7, I think honestly that is harder for parents than the kids. Most kids seem to get used to it almost instantly. My son said it felt "a bit weird" in bed the first night (but still fell asleep fine) and never had trouble sleeping with it after that. It becomes, I think, like my glasses are to me -- yeah, I curse them sometimes, when they fog up when I come in from the rain or get in the way when I'm reading in bed, but usually I don't think about them and I would be lost without them.

And yes, I second the motion to visit and also introduce your wife to the children with diabetes website. Lots of parents their with kids the same age as yours.

[RobiJo]

As for being hooked up 24/7, I think honestly that is harder for parents than the kids. Most kids seem to get used to it almost instantly. My son said it felt "a bit weird" in bed the first night (but still fell asleep fine) and never had trouble sleeping with it after that. It becomes, I think, like my glasses are to me -- yeah, I curse them sometimes, when they fog up when I come in from the rain or get in the way when I'm reading in bed, but usually I don't think about them and I would be lost without them.




Very well put Holly. I may just use that analogy myself in the future. Wearing a pump is very much like wearing your glasses, favorite necklace, or wedding band. It becomes something that is just there, but when it's not you feel lost without.

[cokerrm]

Andre,
I have had Type 1 since I was 4 years old and turned 53 last week so I know what your daughter (and wife) are going through. There is absolutely no question that the benefits of pumping will outweight the negatives. I was on needle injections for 44 years then went on the conventional pump 5 years ago. 4 months ago I switched to the OmniPod which I would advise you to investigate. Here is the initial link Home - OmniPod Insulin Management System (http://www.myomnipod.com/).