My son has been having a tough time now that he is out of the honeymoon period. His A1C has gone from 7.0 to 7.9 since pumping…but that isn’t the issue…
He has been on a rollercoaster of highs and lows… not sure where they all were coming from… some were pump change highs…some were him over correcting…some were cuz he just left the honeymoon period and he wasn’t “regulated” right. The O-instructor noticed that he wasn’t receiving enough basal when she looked at the pump stats. He was running… on more bolus and correction than basal.
Before she noticed that though… .he had a low that caused him to passout and end up in the ER w/a concussion and a hurt knee… then less than a week later a 37 that didn’t cause him to pass out.
So…his doctors and Pump instructor at the doctor’s office decided to take what they felt was the biggest 'variable" out for the problem… the OMNIPOD. They said that they have “issues” w/it and that they have had people go off of it and then do much better. They chose to take some off and others “begged” to go off of it. I am not sure the problem is the pod. But here we sit…back on MDI since Friday and he is already wanting to go back on a pump…“Any pump” he said is better than this… he says. He is very compliant… maybe even overly at times… ( correcting a lot…testing a lot) But right now they have him running at what they call a “safe” high and he hates it… I have to wake him at 3 am to make him give himself a shot cuz he doesn’t want me to do it. (he is 16) and he is pretty much in the 200s now all the time and it is exam week and he is in the 11th grade. They want to see how he does off the pump…get him into some better habits… try a saline solution trial of another pump…at his next visit then they will decide if he can go back on a pump. Not sure I like that I wasn’t consulted before they just decided he had to go off of it. I would have liked to be part of the discussion. I know they are the experts…but I am his mom. Even HE should have been part of it… but when I told him about going back MDI he said “I’m cool w/that”…but 5 days later…he is not so “cool w/it” anymore.
Hi,
That seems a little extreme to me to have taken him off the POD. Is he seeing Endo at a diabetes center? When I went on the Pod there was a very long adjustment period (6months or so) before my levels became stable. I personally feel “ANY” pump is better than no pump. Simply because of the fact you get a steady basal dose 24hrs a day, which in turn, mostly eliminates all the highs and lows. Your son’s drs need to monitor the Pod info closely and make small adjustments at a time. Eventually the right combination will be found. I would “NOT” give up on the pump, and I would tell them so.
Good luck and keep in touch
Matt.
I didn’t know that a dr could force someone off of a pump! That does not seem right. I am sorry for your pain, when your child is hurting, it is the worst. My five year old often says to me “mom, I wish I didn’t have diabetes”. Breaks my heart. When is your sons next appointment? It seems they need to be working more with you to get his basals correct, not just pull him off of a pump. Maybe another dr would be a better choice. Someone who is looking at your son’s “numbers” daily for a few weeks. That is how my son’s dr’s office worked with us in the beginning.
Our family is having to decide whether to stay on the Omnipod or switch to a traditional pump. Our health insurance has changed, and to stay on the Omnipod will mean several thousand more per year for us. (it is myself and my son) Since we are not “thrilled” with many aspects of the omnipod, it is a hard decision. (not thrilled with: all of the failed pods, alarms not working when there was an inclusion, the highs whenever we change a pod, pods getting knocked off) (but thrilled with: no tubing, nothing attached to us to hold our pumps, the freedom that the pumps have given us).
I find that just ridiculous! The method of insulin delivery is a personal choice and, while your doctor should consult, you need to be part of the decision making team. If the Pod were malfunctioning or your son did not like it, that would be a different story. It will take time, as it does with MDI to work out his basals, ratios and correction factors.
If it were me, I would be call ing the doctor’s office and insisting to go back on a pump if that is what you and your son want. At his age, I can only imagine how much convenience it brings to his life. No matter which delivery method, he will have to develop ‘better habits.’ The fact is if he is just out of honeymoon, he has a lot to learn and a lot to incorporate into his daily life. This is DELIVERY METHOD independent!
They told me that they want him to try a saline solution of another pump after his next visit in the middle of FEB. And that they can get a better idea of what is going on when he is MDI than on a pump. Kinda like starting over for a bit. My biggest thing was the fact that they just decided this w/out my input at all. The hospital that he is seen at is a very very good Pediatric hospital…one of the best we have around. However, they aren’t as trained in the Omn. pod as they are the other pumps.
Part of the problem was that he was having too much “freedom” I guess on the pump and since he is a very intelligent teen…he would do things like temps on his own cuz he felt better low… or wanted a high to come down faster. I think part of it …besides their mistrust in the Omnipod was “safety and habits he was getting into”. I still don’t like it just being thrown at me the way it was…I would have liked to be part of the decision on taking him off…even though I get the point. They even said… if he went on like he was he was a canidate for “dead in bed syndrome” or someting like that they called it…not sure the exact wording now. I was kinda in shock that they said… off the up as of tonight!..
He is one that was having crazy pump change highs…and occlusions too. But the biggest problem could happen on any pump and that is over correcting…he can’t do that mdi and I think that is part of why they were so severe??
I agree with you, that you should have had a voice in the decision. I guess I should consider myself lucky to have the Packard team that is very open to discussing options with us. I have learned from my many years of being a T1D parent that one size does not fit all, and T1D management is a lifelong commitment that needs to be dealt with very individually.
My feeling is that if they were truly a great TiD pediatric practice they would not let the delivery method be the factor that they can’t figure out.
I can relate to what your son is doing. I went about setting my own basals myself, and it was HARD. Being an educated diabetic of 20 years, I thought it would be easy. It was not. I eventually got my basals set, but I did alot of things wrong along the way. It sounds like his dr’s have lost faith in him making good decisions. Since your son was taken off of an insulin pump for his actions, I would think he has learned his lesson?? My advice going forward would be to have a talk with your son about being more dependant on his dr’s to set his basals, learn more about how basals and temp basals work (and extended!). The book “thinking like a pancreas” is supposed to be very helpful. It sounds like he wants to be in control of his diabetes, but he does not have the knowledge to do it safely. (but he thinks he does!) Very teenager-y. 
I am all for them trying to get him to understand the ramification of his actions. He is still learning, but he is old enough to hear the straight story.
Having said that, he certainly can overcorrect with MDI. Surely they are having him correct with shots just as he would with the pump. It is not as convenient, but that does not stop him from doing it.
All this to say that you and your son are stakeholders in this decision. You should be learning no matter what the method. The choice should be yours
I agree! I can’t imagine going back to MDI after being on a pump.
So sorry you’re having to go through this. The doc’s reasoning is really kind of ridiculous. A teenager who’s forced into a diabetes regimen he doesn’t want can just as easily have destructive habits. When my daughter was on MDI, she stopped eating at times because she couldn’t bear the thought of another shot. I know others who just don’t do the shot and go quite high. You can rollercoaster on MDI just as much as you can on a pump – in fact, probably more so. I’m not sure why they told you that about dead in bed syndrome – from what I’ve read, experts really aren’t sure what causes it, or what are the risks for it. Also, why couldn’t they work with you and your son to figure out better ways to manage ON the OmniPod? If they don’t know it that well, I’d bet that an Insulet trainer could help you.
I’d be extremely leery of any doctor that forces you and your son to change regimens without your input. Your son has to learn to be the “master” of his own diabetes. His doc should provide assistance and education (and it sounds like education is what’s needed), but ultimately, the decisions need to be your sons. Just curious, what pediatric hospital is this doc affiliated with?
Just curious, how long has he been pumping? I just started the Pod back in September and so far so good. I don’t remember how long my honeymoon period was when I started on the Cozmo 6 years ago. I have to agree with Matt, I think that pulling him off of the pump is a little too drastic without tweaking some of his settings first. If your not seeing an Endo and an Diabetes Educator I would suggest trying to locate them in your area. Mine are excellent and I can’t imagine being without their experience and expertise for “dialing me in” and providing support.
Cheers,
KCO
He has been on it since April. He was diagnosed 11/14/09 so not too long after diagnosis. They were trying to tweek his settings…and w/help from an Omnipod pump instructor then he had a second big low…(turns out it was cuz he ate candy and didn’t wash his hands) but we didn’t know that at first and they just saw two big lows in 1 week even w/ tweaking the numbers.
I have decided…when they let him go back…I am going to tell them…that I want one more try on the Omnipod and to give it another chance. If the take him off of it they will have to write that it was “medically necessary” and then he would never be able to use it again I fear. He loves the freedom of the pods. We have to give it at least one more shot…I will have him try the saline solution of another pump just so he can see what it is like though. But…we could always go off of the Pods later if he still doesn’t get them to work for him…but if they do it now…his chance is gone. I will discuss this w/the Omnipod trainer I have been working with. What is the best way to make sure they don’t say… NO PODs w/out trying one more time.
Sorry to hear that. Any pump is definitely better than MDI. Have you checked with a couple of different endocrinologists? His problem may be in the I:C ratios/correction factors/basal rates.
I wish the best to you and your son.
When he gets back on the pod, there is a protocol and worksheets that you can use to fine-tune basal, bolus and correction rates. It is on Minimed’s education site. You follow the instructions, and then contact a medical professional for the amount to change the setting you are checking. I have an excellent CDE who does most of my adjustments. She has orders from my endo, so it’s all “legal”. I like working with her, because her appointments are longer and more relaxed than my endo.
Hopefully you son will understand now that he has to be careful messing with settings himself or he might not be able to use any pump again.
Sorry but the statement “Any pump is definitely better than MDI” is not justified in my view. Convenience might be an issue with MDI that is true. But if managed correctly the achievable quality of glucose control should be equal between pump and MDI. Flexibility and easy handling might still turn the preference towards pumping. But I just oppose to disqualify MDI as “the poor man’s pump with poor control”. The right amount of active basal insulin is the key to good control and in my view the modern basal insulins have their advantages here.
Still I do not get why they are setting a target value of 200 mg/dl with MDI? He had some severe lows but as I understand he is not hypo unaware. Do they think the experience with the blackout changed his management out of fears of going low? How can they expect your son to be compliant with MDI when they are ordering him to shoot for bad numbers? In my view a target of 140 or 150 would have been sufficient to be on the safe side.
Hi,
Yes, you’re right. This is very subjective. I was mostly thinking to the convenience factor, and less from a diabetes management point of view. I don’t have diabetes and therefore wouldn’t know for sure. However, all statistics point to the fact that pump wearers have much better control of their HbA1c and BG levels.
Best regards,
Gil
I totally agree… they were shooting for “safe” but safe that high doesn’t “feel” good to him and yes… that makes him hate MDI even more. He is a good kid…has been very compliant about his care and hardly ever angry about it…until now. He hates this…if they don’t put him back on a pump he might become nocompliant in his care. That scares me…on Friday he came home and didn’t want to test or snack and it had been a little more than 3 hrs. since the last one…
I ended up bribing him by saying " Come on…lets go to Chick Fil A" and once he got in the car I told him" OK now talk" and he did and then he ate and was fine after that. But…this has never been a problem on the pump. I am not against MDI…but it is very tough for a 16 yr. old active boy to fit it all and schedule it all in to his very busy life. He was happy on the Pods… we need to figure them out…if we can’t…then and only then will we go to a tubed pump. He needs to be given one more chance before they decide it is Medically unsuited for him and take it away for ever. They need to show him that respect…he has been a good kid though all of this and I will be his advocate and demand they the let him have one more chance…or I will find a Doctor that will. If they take his chance for Podding away totally w/out one more try…he will be angry for many years… if he tries the pods and he sees that it goes back to the rollercoaster ride he was on… then he can say…well… I tried and it wasn’t good so ok…lets try the other kind… he needs that and as his mom…I am gonna make sure he gets that. At 16 you can only have so many adults controling your life before you just can’t take it anymore…