My son is 10 and we would like to get him on the pump. We have waited until he was mentally ready for it and now he is. Also, we have been told my his diabetic clinic that 10 is a very good age to get one as they still listen to authority and have the capability to learn. What troubles me it seems that the clinic seems to think we don't understand the pump.
I understand that they are trying to make us aware of what entails the use of a pump. It just seems that they think we are slightly clueless. We are responsible parents and care for our son very much so. We struggle with so many ups and downs of his BG numbers and felt that the pump would help him get better control. We completely understand that it takes more testing and care and attention to carbs, etc. in order to fully benefit from the pump.
We have been told that his AC1 must be lower BEFORE he is put on the pump. Fair enough we will work harder to get it down but we still cannot get a consistent BG. It's so erratic it's frustrating.
My question to you is, what steps did you have to take to get your child on the pump. We have had to fill out a three day very detailed record of BG's, insulin and meals (what we weighed out, etc.)
Then we had to go through a powerpoint presentation that was in a tone for a child. Next, when they approve it, we will then go to a session at the hospital.
I understand that they want us to be fully aware of what is involved in pump usage but help us. Don't be condescending.
The whole "the A1c has to be lower before you go on a pump," makes me SO mad. We weren't treated that way but I have a friend who was. I convinced her to switch endos. No other disease gets that sort of treatment. You give the patient the best treatment you know exists that they are willing to do - of course you encourage them to make other healthy decisions to make management better. But can you imagine an oncologist telling a cancer patient they are getting outdated treatment because they aren't living the healthiest lifestyle to promote healing?
As far as training and filling out logs etc. I think some of that has to do with the legal issues involved. The pump companies and CGM companies have had so much trouble with the FDA lately (some warranted and some not) that I think everyone is going to great lengths to cover themselves. I didn't mind jumping through those hoops as long as I was, in the end, getting what we wanted for my son.
Thank you for your reply. I hope they approve this soon. We have spoken with adults and parent's of children who are on the pump and they highly recommend pumping. They say their BG numbers improved greatly after going on the pump. So, I don't understand the hesitation with them. I'm just a little frustrated.
The fact someone would say "You need to get his numbers under control" I would ask, do YOU understand diabetes at all? You never control diabetes, you live with it. The whole point of a pump is because you can't control the numbers at best like you can with injections. We put our son on the pump when he just turned 6. He was diag. at 2 1/2... His numbers were erratic while at school. At home we can regulate the food and carbs better and keep the lows and highs down. But when at school they wouldn't or couldn't and this is why we went to the pump. It is a personal choice, that you and your spouse need to make WITH your child. Don't force them or they will hate it and not want to use it properly. When we started, it was like learning diabetes all over again. It is so different in process and theory... After 3-4 months now, we seem to have a good grasp at it now and will start working on dropping the BG to a better number. If your Doctor is reluctant in doing the pump, it is because THEY don't understand it... not you.
My daughters doctor encouraged us to get a pump from almost the first day she was diagnosed. It is an aweful policy to say that someone has to control their blood sugars before going on pump. It is impossible to keep blood sugars leveled out when doing manual injections.
My recommendation would be to shop around for a new doctor.
Our younger son was 10 when he started pumping, a few months after he was diagnosed; (the older one was 14, but he started right after he was diagnosed).
We did have to go through all of the detailed record keeping, but it was just for a month, and part of it, as I understood it, was to help determine the initial settings to be used in the pump. They also are trying to gauge if you have a good handle on the carb counting. The pump is most beneficial when it has the best information available to utilize when it is calculating an insulin dose. Estimating can complicate things, and result in some pretty scary lows and/or highs. We also had a session at our doctor's office, and it was for the whole family, so as I recall, was on a level that children could understand as well, but it didn't strike me as condescending.
The pump is a great tool, but it is not magic. It can help achieve better control, but definitely has its own challenges.
The A1C requirement is puzzling. If you are really unhappy with how things are progressing, I would talk with your endo to get a better explanation than "just because" and if you aren't satisfied, find another doctor.
I completely agree here, the pump isn't a magical "fix it" tool. It actually is more work, but in a different way. The carb counting and the constant testing, bolusing and temp basals. It is a more hands on approach at it, which better suits me and our family. But I also know that we are having a lot less lows and a lot less highs. I am a very technical person, numbers work for me, so working the pump came easy. Where as injections and predicting BG numbers hours later with a 5 yr old was nearly impossible. What we did 3-4 months leading up to getting the pump. We started a food log book. We logged everything our son ate, when he ate it, what his BG was and the total carb count. We also included amounts of protein so to see the prolonged platues and carb effects they had on him. So once we started the pump, the carb counting was second nature and we weren't surprised by the amount of time you spend doing it. No joking, get a good scale and extra measuring cups for around the kitchen. We have 3 sets and it seems they are always dirty and never in the drawer where they should be, but maybe that is just us. HA
Hi, just our experience but I don't think atypical. In our country pumps are state-offered and expensive (at least in the sense that there is limited resources allocated to the delivery of pumps). As such, we found that there was immense inertia towards moving to a pump despite to my mind significant indicators that this was the best option available.
Our first year was very bad from every perspective - poor control, fight for services, my daughter's outlook. However this second year (now with pump) though very trying has ended well with a full 1% drop in her HbA1C.
My advice - fight, push, cajole constantly and persistently to get a pump. Regardless of sugar control, it changed everything for my daughter and us. I can't imagine having anything like the control (and I still use that loosely) we have using injections alone - she was on 6/day beforehand and terrible numbers.
We found the 'fight' exhausting and frustrating but (somehow, mostly) kept our heads and got what we needed (not necessarily wanted). Dig deep and you'll find it will be worthwhile.
Hi Blondie - My son has been pumping for over 14 years - started the week he turned 4 - dx@ 2.5. I agree with several replies that suggest you look for a new endo group - to suggest that the A1C has to be better prior to start is nonsense. Not sure where you live but perhaps you can reach out to other parents of T1D kids in your area and see where they go. When you begin a pump start it can be very trying and having an office that is supportive is important! We actually traveled to a different state to have Malcolm followed by the endo of our choosing. The record keeping is important and will be useful as you move through your pump start even though it is annoying! For many years we continued to keep logs of carb intake etc. this has helped Malcolm as he took over his D care. Let me know if I can be of any other help to you!
Barbi
Our requirements were mainly by our insurance company (Aetna) when my son was diagnosed at 16. His BG had to actually be high to qualify for the pump.
We had to meet with a Diabetes Educator for several sessions, document that we were logging carbs, testing, doing injections of insulin, etc., submit A1C numbers after 6 months of MDI and the # had to be over 7.0 or they would not approve moving to the pump. The Endo along with the Diabetes Educator handled the submission and coordinated with Omnipod. We had approval within a few days after everything was sent. They seemed used to submitting this information for patients and I felt that the policy was more because of the insurance companies than the doctor's policies.
I would have found it hard in the first few months to cope with all of the testing required to get the pump setup. Everything was so new and foreign in the beginning but at 6 months we had a better understanding of how everything impacted his BG. It did feel like we learned one way (MDI) and were just getting comfortable with it and then had to relearn everything for the pump. In the beginning, his BG went up on the pump but soon we had it adjusted and now his BG is as good as my slightly elevated Pre Diabetic Type II BG. He loves being able to turn down the flow temporarily for sports - he plays hockey at college. We test next week after his first semester away at college. We hope his A1C is within range!
With my daughter we had to get a total of 3 classes to be prepared for the initial start of the pump. Basal and Bolus, Carb Counting and initial pump use. Once we did all these she began. It's been a great change once on it, better control and A1c's have improved.Log everything, levels, carb intake, dosing of insulin for foods and corrections. Look into www.calorieking.com there you can get the amount of carbs for almost any food out there and portions applicable for your son. Also read labels when you go food shopping and get measuring cups and start portion control with carbs. Show the that you know what you need to do and you'll see, he'll get his pump. Push and do not give up..
As a parent of a child with Type 1, I have always been "take charge" with his diabetes care. Our first endo was not okay with my approach and in his defense I was just learning about diabetes so he felt I was a potential danger to our son. We ended up parting ways over this same issue you are having, though our son was only 6 at the time (he is now 10).
My suggestion: learn everything you can about diabetes--take all the pumping and education classes you can stand, buy books advocating different approaches to care, and get a CGM approved now while your child's control is less than what the doctor wants. We used to use the Medtronic CGM, but our son found it painful and it lost sensor constantly. Their new sensor is "supposed" to be approved in the US soon and Europeans have reviewed it very positively. However, we now use the Dexcom G4 and believe it is the best diabetes product we have ever owned (we have used 2 different pumps). We are currently paying out of pocket we love it so much (sensors are $500/mo-ouch!). I work extra on Saturdays just to cover the costs. Best of luck!
Thank you all for your replies. We finally made approval. We got my son's A1C down to a good number and that is what the doctor wanted. In May, we will attend pump classes. I don't work in the summer months so it will give my son and I time to learn how to use the pump before he returns to school in September. I'm sure I will posting more questions about the pump and I will answer any questions you may have.
