First diabetes vacation a nightmare, pods unreliable?

Had a rough week of vacation with kennedy having highs 200 to 300 not comi g down except with a shot, changed pump out , then again on a second day with highs, then after a third pod change we considered diabetes the culprit and increased her basals, with overnight drops wakiing up 52, at this point Nottingham trusting pod at all and giving shots for meals to be sure she’s not going to 300, wondering g if we
Should go back to shots, hate having a pump that seems to work about 80 percent of the time… Kinks mainly…

Kennedy had a terrible week, missed out of lots because of her highs and lows, and she’s freaking hungry!!’ spending so much time with highs we are waiting for her bs to come down missing out on fruits even, to control her sugars…

My husband and I are at each others throats… Our marriage is shot… Our other kids are so neglected, and sad…

Is there any hope in sight ??

I'm never sure how to answer questions about pods that involve changing and failure. I had a vacation recently that went ok, a bit "off" but some of that was just eating more.

I didn't even look at pods as my clinic was 100% MiniMed but it seems like people who have them are always dealing with not being sure if they work out sometimes and then cleaning them up? When you say 80%, does it work pretty good during that 80% of the time? I am sort of "lucky" in that my MiniMed pump has always worked pretty well for me? I had gone on vacation recently and had a few "yikes" issues. To me a drop to 52 in the morning would be yikes but if I had been at 300, I'd be "eek" but sort of relieved to be at 52 and look at it as back and forth, sort of like walking artillery rounds onto a target.

I have always run my own show and understand that it must be horribly harder for parents. My marriage/ family situation is different as I am always at my daughter's throat and get angry but I'm the d situation and only have one kid and one dog. I try to pound on my daughter to make her smarter and stronger and she is quite smart and quite strong (but would, of course, benefit from more exercise...) and have tried to tell her as much positive but I just blow my stack at her sometimes. My wife understands that I have a short fuse but is on me to not blow up at her and be more "leaderly" and I get mad at myself and my daughter and it's totally hard. My wife realizes that when we are "on" we are a good team. I'm sorry to hear about you and your husband being at each other's throats. That would make it hard too. Does he particpate the diabetes conundrums or do you get stuck dealing with that by yourself?

How old is your daughter? I was dx'ed when I was 16 and have always sort of run my own show? I had quite a few hair raising hypos but maybe your daughter could run things more and help take some of the pressure off? I would freak out if anyone tried to suggest what to do to me now. Even the doctor. I had one hypo once and the nurse emailed me "you should do this" and I was like "I did 2 days ago, it appears to be working..." and that's about it. My daughter is a LOT smarter than me about math and science these days, although maybe she doesn't have the breadth of systemic knowledge about the universe I have, she is *very* fast at math. I suspect she could handle it but I would be concerned that she would think I was full of crap and not listen to me as can be the case and that the doctor wouldn't trim her sails as tightly as I would. Or that she *would* trim her sails and would have problems the other way. Terrifying.

No matter what method you use you have to stick on this condition like fly to S**t. I've been diabetic for nearly four decades and many of them I was under no management what so ever. Many people praise the pumps but at the same time I also here there are quite a few issues that can occur despite allowing a little more flexibility. Personally I've stuck with the shots. It's cheaper, I don't have crap hanging off me and I feel you can get similar control as long as your willing to take between 4-6 shots a day. The only real advantage I see with the pump from the outside looking in is after bolusing for a meal you can't eat anymore carbs unless you take another shot where as the pump you would just click a button. Certainly not near enough for me to go that route. We desperately need a new form of treatment altogether for diabetes. It's so much more then just taking a shot and watching your diet. Good luck.. We all need it.

Perhaps you and your husband can spend a few hours away from each other? What if one of you stayed home with Kennedy and one of you take the kids out for the day?

You have to test to get control too. Pumps are advantageous because the basal insulin delivery is much smoother and regular. To me, a big advantage is more precise logging.

Many of your other posts revolve around how miserable you are Gary but a lot of what you describe is directly attributable to the vagaries of NPH. Which isn’t helped by not testing but, after trying a pump, I realize a lot of my “crazy” feelings were just NPh being late or early or everywhere else.

Our vacations since diagnosed ( 1983 ) have not always been pretty , however we always have been able to turn " it " around somehow .I will leave home on April 11 for a class reunion in Amsterdam ...Dam ( my little joke :))... I am NOT willing to give up and in. My hubby and I are at each other's throats every so often too ...together since 1981 ..our age is also getting in the way ( 81 /71 ) ...unsure , if my story will help you ...I am the pumper in the family ...BIG hugs .

Most of my sugar related problems are not from the NPH. Its more about overeating too much during lows and not testing enough. Tonight I had a 270 and strangely I felt rather fine. I would have never suspected a high though I was feeling a little sluggish. If all my highs felt like that I'd probably be not so grumpy. Anyway this week has been rather good sugar wise so I have been in a better mood. Still I have lots of crap on my mind and worried about a bunch of inevitable stuff.

but, if you have lows, they can be caused by NPH, if the NPH peaks have only a 53% chance of peaking when they are supposed to, 6-10? hours after injection, the peak can come early, resulting in an early low, treatment, and then an insulin "shortage" later. If the peak is late, you sail into lunch higher, correct and then the three doses (peak+ bolus+ correction) hit later.

To me, this sort of seems analogous to the problems w/ the Omnipods, insertion+ "is it working?"= correction = low later when all the insulin floating around finally hits.

Hi Natalie ~

I am sorry you had a rough vacation. I researched pumps for about a year while my insurance company was trying to decide if a pump was in my future. I chose the Animas Ping. One of the big reasons was reliability. I think AcidRock has it right. A pump that works 80 percent of the time isn't getting the job done in a situation that requires a 100 percent function. AcidRock uses the MiniMed and I use the Animas Ping. I didn't choose the Omnipod, in part because there are stories such as yours all over the place. Both are very reliable pumps. The tube connecting the pump to the body is not an issue at all. I have never hooked it on anything and tore out an infusion set by doing something stupid. I had it coming. Kids will be kids, and they will ahve an accident occasionally. They need to learn from these things, and they will if you allow them. My recommendation is to look at an alternative pump before considering an MDI regimen of six to seven shots each day with a more difficult time of control. If your daughter is hungry, protein won't hurt her. I won't say more than that because I still, after a very long time, must look up food values to calculate for my pump.

I work in human services. Time and time again I see families that neglect other family members in favor of the family member with the special need. I can see why you, and your husband, as parents, are stressed. Parents can be so protective that children do not allowed to take a bump. Children in this situation are taught to sacrifice for their sibling, who just wants to be like them. It is okay to say no to the one with the need, and it is okay as well to tread the others to a special occasion or reward too. It is most important to be equal and normal, in as much as possible.

Now, for your marriage. It seem to me that as long as you are at each other's throat, you are still talking. That is a very good sign. Too often parents spend so much time taking care of the child with needs that they forget that they need too. I urge to get help form a professional to get this stuff sorted out and then diligently work together on making your marriage work as a team. There is help out there, such as EAP programs from employers, counciling centers, religious organizations family service centers, and a myrid of others. They are worth every penny. I believe that marriages can be saved. Even if it isn't possible to save a marriage, the copule needs to part in such a way that they are comfortable in each other's company. After all, they are your children as a couple and couples need to get along well enough so that they are positive for all of their children.

I am really interested in how you are doing. I feel for your situation. Not ever having a spouse or family of my own, I am envious of those who have this privilege. Failing seldom has a positive effect.

Keep us posted. Be well

Brian Wittman

I would assume when I wake up in the morning usually around 7 o'clock that the NPH is more or less done at that point. The endo I just went to see said your liver gradually spills sugar through night as opposed to dumping it all at once which I find kind of strange. I'm not saying a different long acting insulin wouldn't be more consistent but I am only using the NPH through the night. During the day I sometimes use R and sometimes humalog depending on my schedule and how things seem to be going. The two main issues are the way I feel which obviously is my biggest struggle but over the last two years I've had numerous near coma lows while sleeping that seem to be extremely dangerous. I think what is happening is I am going to bed trending low and possibly the NPH may be peaking a little too quickly being I usually take it at 9pm. This morning I had another severe low because my high from last night wasn't completely through its cycle and I stacked too much to get it down. Also I got two readings within 15 min apart that were 50 points difference. If I don't start being more careful at night I will end up dead sooner or later. Like I said if it weren't for my folks saving me I would not be here.

I have a MiniMed pump as well, and mine works wonderfully. That was the main drawback with me for Omnipod such stories of yours, people not seeming to be able to get consistent results with it. It still can be a bit of a struggle, but for me when my numbers are off, its not due to pump malfunction, it's due to not calculating my carbs right, or a change needs to be made in my basal rates somewhere. Perhaps depending on how long you have had the Omnipod for, you might look into other pumps. I know if mine only seemed to work 80% of the time, I'd be quite frustrated too. I think the "tubeles" feature is a big seller for OmniPod and people get attracted to it for that reason, but to me tubeless is useless if it isn't functioning with reliability. Sorry you are having such a rough time. Hope things start looking up for you.

I’m sorry you had such a rough time of it. We’ve got about 8 months on you of living with a child with diabetes. It can get better - if you work at it.

We don’t use the Omnipod - never even seriously considered it because it seems to have more negative reviews than the other available pumps. Our endo’s experience was that most of their patients who tried the Omnipod ended up switching to a tubed pump sooner or later. My son has been using an Animas ping for about 9 months, and we have no complaints - he loves it.

Regarding the family relationships, having your child diagnosed with this disease is devastating. It certainly can take a toll on your marriage and your relationships with your diabetic child and your non-diabetic children. I will admit that I got pretty immersed in books, research, etc. for quite some time, and, looking back, I was probably a bit depressed, too. One day I woke up and realized that diabetes was already robbing our family of the more carefree lifestyle we had before, and it was damn sure not going to rob us of anything else. I put away all the books - I refer to them if needed, but they don’t sit on my nightstand as a constant reminder anymore. I stopped surfing the web and visiting forums full of people who were not managing well. I didn’t need horror stories - I needed to learn from people who were successfully living with this. I make a concerted effort to NOT ask my son about his blood sugars all the time. He manages very well, and he alerts me if something is out of whack. I still help when issues arise and and will check his meter when he’s not around, but I am working hard on making sure he knows that he’s competent to care for himself and make good decisions. I stopped nitpicking my husband for everything he does regarding our son. He loves our son as much as I do and is capable of caring for him, even if it’s not the way I would do it. I also started making a concerted effort to outwardly show just as much interest in my non-diabetic child as the diabetic one. I realized somewhere along the way, that I spent way too much time thinking about how my diabetic child was doing and that I was not showing my normal interest or enthusiasm for what was going on with my non-diabetic child. Basically, I just had to decide that we could manage this disease or it could manage us. I wasn’t willing to give up any more control to a malfunctioning pancreas!

Our local JDRF chapter has a mentor program. If you don’t have someone close to talk about all of this stuff with, maybe JDRF could hook you up with someone to help?

All of that to say, it all certainly gets easier with time and experience - and with effort to make sure diabetes doesn’t take any more from you than it already has.

Best wishes to you and your family.

Natalie, how frustrating to have a vacation that is anything but, I'm so sorry you didn't get to enjoy it.

I also use an Animas Ping, and find it has been 100% reliable except for user error. It sounds to me as if an unreliable tool is less use to you than no tool at all. Some people love the Omnipod, some don't - it's the same with every pump.

I agree with the suggestion that you consider a tubed pump. Since the Omnipod is not an investment in machinery (I think? Just the pods, right?) you should be able to switch. If you do decide to go with a different pump, please make sure you have the opportunity to see/handle them before you make a decision.

I know the tubing seems like a big issue - it did to me - but it really isn't.

Please keep us posted, and hugs to you all!

natalie, so sorry your trip was a struggle, i feel your pain, since your doing so many shots already maybe a pump vaca? we have been overall happy with omnipod lately, with a good bolus post pod change, we have minimized the post pod change highs, maybe the excitement of vaca and possibly puberty are contributing to her highs. i know esp on vaca and during regular life i try to make diabetes not the winner in sabatoging jacobs and our lives, i can be sad and over obsess but try not to let jacob see it, we try to be aware always but treat it and forget it at times i know that is how jacob deals with it i'm not saying dont always consider all the variables adjust be prepared react ect. but dont let it win! i tend to favor jacob over his brother but he has always been more needy and yes my husband is jealous because we are close, but i try to mindful of my other son mason and my husbands needs as well.. it is oh so hard especially if things are going bad but i would say if you are really struggling with omnipod and kennedy is in agreement take a break, if not i would work closely with her endo to try to tweak things she could be hitting the terrible pre teen/ teen thing or she could of been stressed about dealing with her D and everyone else dealing with her D on vaca, take a deep breath you can do this! we are all behind you and feel your frustration, one day at a time and remember there is life and goodness about that has nothing to do with diabetes! best wishes, amy

my husband is not willing to help out with d, pretty much at all, I am a medical person, so it is natural for me to take the lead, 80% of the time, it works fantastically!, but there's 20 % ???? We did really have a bad week, and after increasing the basals, things seem to be getting better, back to scratch testing basals now...

I would like her to do more when she's ready, but she's not ready yet. She does all her testing, ( with a prompt) counts her carbs ( with a little help) looks up stuff on calorie king.

Same here.. when we are " on" we are a good team... but things seem to blow up when her diabetes is out of whack...

thanks for listening, wow, what a horrible rant..

yep, we're trying that today... ( Easter Sunday, oh well...)

thanks for listening, nice to know y'all are out there for support!

thanks brian, we do have some counseling set up at our first visit at vanderbilt, for both my husband and the little kids, 5 and 8 .

We are lucky to be married 17 years, thanks..

thanks! I'll check into the mentoring, you mean for parents? or for kids? or both...

thanks, I just have a hard time telling if it's the pump or the diabetes, hate having a week of bad blood sugars, replacing the pump over and over, then realizing really she just needs more insulin... animas would be next on our list, for sure, but we are out of insurance for a little while, and we'd be out cash for the up front cost... I know her age is tough, getting into teen hormones and all... thanks for listening...