Hi - our daughter was diagnosed 2 months ago and we have done fairly well so far. We were incredibly lucky that we caught her initial symptoms before she went into DKA and she is adjusting so well. The main question I have right now is about insulin pumps. We are supposed to go to a training class in November to learn about the different types of pumps and how they work with the hope of getting started in January. I am having a hard time getting used to the idea of the pump and losing control of the insulin that's injected into her. We are still using syringes, I decided not to use the pens since we are supposed to switch to the pump in a few months.
What type of pumps do your children use? Can you tell me about your positive and negative experiences? My husband wants to look at the omnipod because it has no tubes but I have heard some negative reviews that may or may not be accurate.
Did anyone have a hard time trusting the pump? I guess I am a total type A personality but I feel safer right now controlling it myself. I have heard that the pump helps control the blood sugar levels better though.
My daughter Chasey uses the medtronic minimed and we like it. We loved our rep at the hospital and we loved our support person at the company that helped us with the paperwork and such.
The pump itself is great. It's not too big and we have never had an issue with the tubing and she is a very active 6 year old. The set up is so easy that Chasey can operate herself. I also like that it does all the calculating for us and records what has gone into her. I also like that way that it takes to our computer and everything can be downloaded and shared with our doctor in a different location. I'm sure other pumps can do this as well.
We also have the CGM system but are not yet trained in it but we are looking forward to using it.
I thought I would have hard time trusting the pump but it's pretty hard to mess things up. It won't allow you to double dose, and there are max bolus settings so no giving too much insulin by mistake. Also it does all the figuring for you based on the settings that you doctor programs the pump for. Also I just learned a week or two again that the pump can have multiple patterns programed in. So for example Chasey gets more insulin per carb on the weekend when she is home with us but then goes on another program for weekdays at school that gives less insulin. It is working real well for us.
We are thrilled with the pump and I don't think we could go back now and both my husband and I are control freaks. Plus her sugar is much better manages now. We were going anywhere from 6-8 injections a day with pen needles and now it's just one injection to put the site on every three days.
Whatever choice you make it has to be right for your family. I just wanted to share our experience with you.
Ditto pretty much everything Jen said. My daughter is also 11, diagnosed 7 months ago. I am the ultimate type A, so I understand your concern.
As Jen said, it's pretty darn hard to mess up a dose with the pump. If anything, the pump makes dosing MUCH more accurate. For example: Last night at dinner Sarah decided she didn't want the meat because it was flavored with plums (which she doesn't like), so she ate a baked potato with cheese and vegetables. She entered the carbs into her pump and ate. But she was still hungry after the baked potato, so she added 15 more carbs and had some soup. About an hour later we decided to make Smores in the fireplace. She tested around 180 (correction zone), but the pump calculated how much insulin was still in her system from dinner, and based on the IOB (insulin on board) recommended no correction. This would have been SO much more difficult without a pump.
Sarah uses an animas ping, which I love. I think it does pretty much all the same stuff as the other pumps, but it also has a remote meter. This is excellent for those times when I test her at night while she's asleep because I don't have to dig around underneath her to find the pump to administer a correction or change her basal rate, I can do it all from the remote and she never even knows I was there.
Like Jen's daughter, Sarah's control is MUCH better since she started on the pump.
I also wanted Sarah to look into the Omnipod. If you go to their website they will send you an example pod. Sarah picked it up once and thought it was was way to heavy to wear on her little body. She absolutely loves her animas ping and wouldn't trade it for the world.
Good luck, and let me know if you want to talk or have the girls chat (as they're the same age).
Contact OmniPod for a sample pump to try. I didn't like it, but many people do. The MiniMed 522 has been great for me and doesn't get in my way, but I'm an adult.
With a pump you still test frequently so you'd know pretty quickly if something was wrong and the pump wasn't working. I took shots for 25 years and would never go back to them... pumping is so much better.
I also have the minimed 522 and love it. I took shots for 27 years and this has been great. Traveling is easier, trips to the fair or Disneyland was easier. I wish I would have gotten myself on the pump so much earlier in life. My A1C is is normal range for the first time in years and I feel great.
I was diagnosed at age 12 and didnt go on a pump until I was in high school. I wish I had switched sooner!!! It makes calculating how much insulin I need to take a lot easier, not to mention LESS SHOTS!! =D
I have the Animas One Touch Ping and I think its one of the best. I didn't go for the Omnipod because I was told the sets don't stay in as well and I played a lot of sports at the time. The remote meter that comes with the Animas One Touch Ping is also a great feature.
My favorite thing about the pump is being able to use the combo bolus feature. When I eat certain foods, like pizza, I tend to absorb the sugar slower because of the fat content. You can set the pump to give you the dose spread out over time instead of all at once to counter act this. I think this is one of the major advantages to having a pump.
I definitely have better control since I started the pump. My A1C's are in the 6's. You should definitely consider getting your daughter one.
first, welcome to juvenation :o) i'm very glad to see you found us here!
i was on shots for 10 years and i've been on a pump for 11 years. i love pumping with all my heart. everyone seems to have already given you some good advice, so i'll leave it to them. i mostly just wanted to welcome you :D
Thanks so much for all the wonderful information! I am looking forward to more even numbers but I know it never stays in the perfect range :). I didnt know you could control the insulin so closely with the pumps so that is great news. Does the pump also cover the long acting lantus or do you need to do one shot a day for that separately?
My daughter has never really been the independent type and I am finding that having type 1 is making her want to stay with me or my husband more. Anyone have any tips on helping her gain a bit of independence? The one thing she really misses is sleepovers at friends house - I know we can eventually do that but we havent yet.
Thanks again - its really reassuring to hear from people who understand! My daughter is the only girl in her school that has type 1 so we havent really connected with anyone yet.
[quote user="mpatton"]Does the pump also cover the long acting lantus or do you need to do one shot a day for that separately?[/quote]
My 8 year old had been on the Animas Ping now for 5 months and I don't know how we ever lived without it!
To answer your question about the basal insulin (Lantus). When you go on the pump you no longer use a long acting insulin like Lantus. The pump will deliver a small amount of your rapid acting insulin (Humalog/Novalog) continuously to act as the basal. The even better part is that you will get to customize the hourly dose of the basal with the pump. For instance, my daughter needs more basal at night so we have her rate a little higher from 9pm until 6am. It all sounds a little overwhelming at first but you will get the hang of it quicly.
Does the pump also cover the long acting lantus or do you need to do one shot a day for that separately?
My daughter has never really been the independent type and I am finding that having type 1 is making her want to stay with me or my husband more. Anyone have any tips on helping her gain a bit of independence? The one thing she really misses is sleepovers at friends house - I know we can eventually do that but we havent yet.
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I'm not sure it's the same for everyone, because I think I've heard of some using Lantus while on the pump, but Sarah no longer takes lantus. The pump administers what's called a Basal dose (very small, incremental doses) of Novalog throughout the day. It's mostly an equivalent amount to the lantus. Sarah was taking 7 units of lantus, and now the pump administers just over 5 units of Novalog spaced through the day. Of course she takes additional Novalog whenever she eats and for corrections (which is really rare these days).
Here's where the pump is so amazingly awesome... Sarah has a lot of activities like dancing and singing which would always drop her low before she had the pump, because once you give the lantus dose, you're pretty much stuck with it for 24 hours. However, with the pump you can suspend the Basal dose. So, if Sarah's about to take a dance class, or go on a hike, or whatever - I test her to make sure she's in a happy place (I'm happy anywhere between about 115-150), and I just suspend her Basal for an hour, two hours, whatever seems appropriate.
As far as independence, Sarah's gotten much better. The first few weeks she didn't want to do anything herself, but pretty quickly learned to give herself shots and such. She's learning to count carbs and doing really well. She's a weirdo, can be really independent with some things, but I call her my Wart, because she's insanely attached to me. We try to increase her responsibilities slowly, and that seems to work.
Sarah has one very best friend and she's been sleeping over at least once a month since probably about a month after her diagnosis (as soon as she was able to give herself shots). Her friends parents are awesome and were really willing to learn enough that they could understand the basics. We got Sarah a cell phone. At first she called me everytime she put something in her mouth, but after the first couple of times she began doing her own carb counting and only called me if she was having a late dessert or her bedtime numbers were weird. I think being able to get back into the routine of sleeping over at her best friends house really helped her to feel back to normal. At this point there's really nothing we don't let her do.
Welcome! I have three boys on minimed pumps. I know how scary it is to transition to the pump. The unknown is a scary thing! But it will be a blessing. You daughter will have a new found freedom, and she will be able to eat with a less stringent schedule. My boys are now 6, 8 and 12. They operate the pumps themselves. (One advantage of minimeds is the ease of use.) They give themselves insulin when they eat, and they correct their own blood sugars. The first few months will be a transition, but soon you will all get the hang of it, and will love the advantage of one shot every three days, rather than 4 or more a day.
You will no longer need lantus. The pump will be all you need! Good luck on your pump journey! Picking a pump is a very personal choice! You will do what is right for your family!
Everyone has given great information, on the pumps - I will just say to get information on all of them and pick the one that you AND your daughter like the best. (For sure get the Omnipod sample) and you will probably see the others at the pump info class. Also remember that just because you take the pump classes, that you can slow down and wait a few more months if you really are not comfortable. However, we have found the pump to be a great blessing for our little boy. We wanted to go on the pump because it is SO much more accurate than you can ever be with a syringe. Our endo said the accuracy of a syringe is +/- 1 unit, while the pump is like +/-0.025 units. So there is almost no risk of it delivering too much.
You will learn you can be way more Type A with the pump than with syringes. ;) There are so many settings and ways to track that you really can dial it in very closely to what your daughter needs.
As far as independence, we have already taught our son to do his own BG checks. He started learning when he was 4.5 y/o. He had always been able to tell someone how to get his meter ready and the lancet ready and so we just kept building on those skills and letting him try it. We never forced, just asked if he wanted to and helped him as he needed. Sometimes we would go a long time in between him trying, but by the time he started school this year, he could do it by himself. We still do his BG pokes at home so that he does not get burned out. HIs teachers keep track of when he has to check at school but he does all the 'work' there. Then the teachers run the pump.
Another advantage of the pump is that it is a lot easier to train another adult to use the pump than to give a shot. It will become easy for you to show them and to walk them thru it on the phone - which should help with sleepovers, etc.
Also let your daughter know it is OK to feel whatever emotions she is feeling and that she can always talk with you about them. It might just been fear, other emotions that are making her more clingy now.
Just wanted to say, you can be just as "type A" with a pump! You may not be able to watch the plunger move when the insulin is administered, but you still control it through her remote (or she will, once she's ready). But even more so, you can be super-duper type A with her basal rates! Lantus was pretty close to "right" for me once I was told to split my dose into one for morning one for night, and then we could adjust those to have some control over when I had more or less basal insulin in my system, but the pump lets you have several basal settings a day! Does she tend to go a little bit hi in the morning? Adjust the basal x number of hours before that! Does she go a little low in the evenings? Adjust for a different basal x number of hours before that! Somewehere in between during the afternoon? Yet another setting! Has she been incredibly active this afternoon and you know that makes her go low? Set a TEMPORARY basal to account for that!