Hello everyone. I wanted to introduce myself, I just signed on tonight for the first time. My husband and I have a daughter who is 10 and was diagnosed a year ago with type 1 and it has been a rough year trying to learn everything. I have spent a lot of time researching things on the internet and reading a lot of books on the subject of diabetes. I have found that hearing others experiences is sometimes the best learning tool, so here I am. We are thinking about using the pump but I am still researching that. If anyone has any suggestions or comments I would love to hear them. Thanks Vickie
Welcome to the Group. My daughter is 10, in 5th grade, wears a pump and was diagnosed April 6th 2004, almost four years ago. We love the pump. It allows more flexibility. You get to dose the food, not eat to cover the insulin. Although I suppose if you don’t mind shots you could just dose whenever you eat, the pens are handy that way. Our philosophy is that we want her life to be as normal as possible. She eats like any other kid, when she wants, how much she wants, and whatever she wants. That isn’t to say that she has carte blanch on candies, treats, sodas, etc. We eat fairly healthy. I like to cook. I have cut back on some of the carbs. If we’re having mashed potatoes, we don’t have cornbread or rolls as well, stuff like that. But if her brother gets to eat something, so does she. We try hard to be “fair”. I worry about her mental health as well as her physical health. I don’t want her feeling deprived and then have her rebel as a teenager. I don’t want her missing out on anything.
Others here have a more strict philosophy when it comes to food. Very low carbs. And as she gets older we’ll probably go towards that direction, but I want her to come to that decision on her own.
We really love the pump though. If we have more than a day of high numbers, and we can rule out other factors, like an old infusion, then we can easily up her basal rates with a temporary change. Maybe she’s got a growth spurt going or she’s fighting a cold, it makes it easier to adjust. We also can play with doesages for certain foods like pizza. Pizza gives us a delayed high, so we use a square, dual bolus, where we give some of the insulin right away and some of it over a period of time, usually a couple of hours.
MY daughter initially liked the pump because she only had to do an infusion site chage every three days, no shots for three days, yeah! But I like the fact that she doesn’t miss out on classroom or after game treats. She knows the carbs or can look them up for almost any food and she just boluses for it. When she plays sports she just unhooks from her pump. Once the game is over she just hooks back up again. We usually also test at that point. But because she’s been so active it’s not usually a problem being unhooked for an hour or two.
Anyway, not sure if that helps any, but feel free to ask any questions, vent or anything else.
It sounds like the pump is great. Right now my daughter is on such a set schedule it is very hard sometimes to keep her numbers where they should be. She gets three meals a day and two snacks a day and we have to have them at certain times. She gets three shots a day and her meals have to be a certain amount of carbs. But if she is not hungry and doesn’t eat the amount of carbs she should then she goes low and if she eats more than she is supposed to then she goes high.
I guess being on the pump things like birthday parties and going to the movies and getting popcorn are not an issue right? Your daughter can eat those things she just has to give herself insulin? Is it hard to change spots for the pump and is it hard to insert it into their skin and keep it there. I like the idea of her being able to eat when and what she wants. Having others siblings who are not diabetic is hard. I have a son who is not diabetic and we limit what my daughter eats and when because of her schedule which causes a lot of fighting about what my son gets and she doesn’t and how it is not fair.
Does your daughter punch in her carbs into the pump or do you do it and is it hard to figure out ans use? My doctor keeps telling me that I probably do not want to go the route of the pump because it is very hard to keep track of things and if you don’t do it right then you keep going low.
Thanks so much for your info, it has been very enlightening to hear.
RE: “My doctor keeps telling me that I probably do not want to go the route of the pump because it is very hard to keep track of things and if you don’t do it right then you keep going low.”
I disagree. My son, who is 5, has been using the pump for the last year and it is MUCH easier to keep track of things. The pump stores basal, bolus and total daily dose histories and all other ratios are stored, easily viewed and adjusted. He puts in all his info, carbs and bg and i just check it before he administers the dose suggested. That’s how easy it is. Possibly, (just a guess) your doctor is not very familiar with pumps? Go ahead and call the pump companies on your own, they will come to see you at home, demonstrate everything and answer questions. Then you will be able to make your own, educated decision.
How often do you have to add the insulin to the pump? Do you wear it to bed at night? Wouldn’t it fall off if the kids roll around alot at night? It almost sounds to easy! It sounds like your diet does not have to be as restrictive if you are on the pump because it is easier to compensate for what you are eating.
Is there a link or someplace that I can find the different pump companies to contact them about how they work?
we fill the cartridge every 6 days, approximately. we stretch site changes to 4 days (unless we forget and leave it for 5! we’ve never had any problems doing this, his sites always look great, no sign of redness or infection, no high bgs.
Sam wears his to bed in a velcro belt with a little pouch attached that our pump rep gave us. it doesn’t bother him at all. during the day he usually just puts it in his pocket.
you could just google the pump companies, or ask your team for the reps numbers in your area. we checked out deltec cosmo and animas, because i had researched those two companies and liked what i read. we went with the animas because it was the smallest, lightest one, had simple to use features and the best customer service out of the two. you can also check out minimed/medtronic. these are the ones we have in canada, so maybe there is another kind where you are, i’m not sure.
Yea, she can eat any time any place, it’s not an issue. We use the Calorie King book that has just about any food in there with the carb counts. Try them online as well, Calorieking.com. It’s nice also to be able to do corrections for highs. We test a good 8 -10 times a day, more if she’s high or low, so if she’s high she just gets a little extra bolus to bring her down. So basically she just tests, and then figures out the carbs for what she’s eating and enters her BG and the carbs and the pump figures out how much insulin she needs. If she’s just had a snack it takes into account the amount of insulin that is still on board so that she doesn’t get doubled up. She is very handy with her pump and she enters everything, her meter actually beams over her blood sugar numbers. We do talk about her numbers and sometimes we add a little insulin or take some off if she’s been running high or low, or depending on what she is eating. It’s not an exact science and you go by feel after you get comfortable.
Keeping track is really easy because you can download the info from the pump, all the BG’s, the carbs, the doseages, etc and track them, chart them and see if you can spot trends. We use that to determine if her background basal rates need adjusting.
My daughter also wears a pump pouch. She usually wears it 24/7, taking it off only to play sports, or to take a shower. It was especially nice in the beginning because if you have it in your pocket when you go to the bathroom it can sometimes come out and fall and tug on the insertion site. I’ve heard of them falling inthe toilet too. But she now sometimes sticks it in her pocket, and the other day she stuck it in her sock and you could see the tubing snacking down the inside of her shorts into her sock. No one noticed but me.
We use a minimed, their website is very informative and their reps will come to your house, well they did to mine. They have some insurance program where you can upgrade to newer models.
For whatever reason, it could be the infusion set itself, our sites only last about three days before the insulin starts not working as well and we have to change to a new site. I think her body is healing up around it and the insulin can’t absorb as well. In any case every time we do a new site change we refill the reservoir with fresh insulin. We only put in as much as we might use in three days, with some extra of course.
Anyway, I would push your doctor, sounds like he/she isn’t too into the pump. We love it.
Hope it helps and feel free to ask any more questions. We are going on vacation tomorrow (Spring Training, Go Padres!) but I’m sure others will chime in as well.
Hi and welcome to the group. My son, Riley, was diagnosed when he was 3. He will be 6 in May.
He started on the pump at the age of 3, five months after he was diagnosed. It has certainly been a blessing to us. The first endo we had wasn’t an advocate for the pump so we found one that was. Of course, the pump is not for everyone. Ultimatly your daughter has to make the decision that she wants the pump since she is who will be wearing it 24/7.
My son is on an Animas because of it’s lower basal rates and because it is waterproof. He swims with it on and wears it in the bath every night. Cozmo is also supposed to be waterproof, but Minimed is not.
Anyway, welcome and email me anytime if you have questions or just feel the need to vent your frustrations over this stupid disease.
Hi Vickie. My son is 9 and was diagnosed at 18 months so in our 8 years with Diabetes we’ve experienced a lot of different regimines and you just have to find what works best for you and your family.
Everyone’s comments are right on. We’ve been pumping for 4 years now and we think back to shots and wonder how we ever did it.
It was our experience that you have to be ready to pump. It is an easier life in my opinion but you have to be ready to do it. We talked about it and researched it for at least a year. Even when it came down to me being ready my husband wasn’t quite there. I had to push him a little and he thanks me everyday that I did.
We also had an issue with our Dr. who didn’t want to put him on the pump at such a young age. We got lucky and moved to a different state and got a new Dr. who was all about what was best for the family. And 3 months into seeing that Dr. we were on the pump.
Right now we are using the OmniPod which is a switch for us from the Cozmo. I think it needs a little more time to develop into a better product so we are switching back to the Cozmo.
My son plays baseball, swims and as a boy is just rough and tumble and the pump has never been an issue in getting in the way of his life.
The CWD website (www.childrenwithdiabetes.com) has a lot of good resources too for information on the different pumps. Definitely start calling around and talking to the different companies. Sometimes our local JDRF chapter holds events and they have the different companies there. There is also the CWD conference in Orlando each year. If it’s something you can do you can get all your questions answered in one place. All the reps from all the pump companies are there and you can actually try one on.