Replies to This Discussion

Permalink Reply by Brian Wittman on April 6, 2012 at 11:07pm

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

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Permalink Reply by christy on April 8, 2012 at 1:17pm

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.

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Permalink Reply by NatalieHodge on April 8, 2012 at 2:43pm

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..

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Permalink Reply by Brian Wittman on April 8, 2012 at 3:35pm

Dear Natalie ~

I am happy to learn that you and your family will be doing some counseling soon. For all of your sake, I hope you don't throw away 17 years and the balanced lives of three children. I know it is a chore to take care of a diabetic child, but it has to be done, and it has to be done together. I have gently read your other responses to those concerned about your situation, and please know that many of us care very deeply about the well-being of those with whom we share a common thread. Ironic, you mention that your daughter is starting to experience the pre-teen and teen years of growth and hormones. I am sure they are out there, but I am not aware of one parent who hasn't survived this storm of years. I have little doubt that you, and your husband, are up to the task. (This very subject was a small part of the meditation on Friday evening) Hang in there, Natalie, whatever happens, you will be alright, and so will your family. I'll remember you in my prayers, and keep us posted as to how you are doing. Be well.

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Permalink Reply by NatalieHodge on April 10, 2012 at 7:52pm

thanks brian,

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Permalink Reply by AustinMom on April 8, 2012 at 2:14pm

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.

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Permalink Reply by NatalieHodge on April 8, 2012 at 2:45pm

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

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Permalink Reply by AustinMom on April 8, 2012 at 3:06pm

The mentoring program here is more for parents, but they can help the whole family. It's a parent who has been through it before you who volunteers to be a mentor.

One other thought... Shortly after my son went on the pump, we went on a cruise to Alaska. He was high consistently and we made a lot of adjustments. We had a few things working against us - we went from 100+ in Austin to 40 degrees in Alaska which increased his basal needs. Then, I found out later, cruise ships(and lots of restaurants) put stuff in their food that you wouldn't imagine would be there, so the carb counts tend to be much higher than what you'd think. For instance, in their scrambled eggs, they put pancake batter to make them fluffy and creamy. A fairly low carb dish is suddenly full of carbs! Also, around that time, we believe his honeymoon started ending - it was about 9 months after he was diagnosed. Perhaps a whole host of factors contributed to your difficulties on vacation.

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Permalink Reply by NatalieHodge on April 10, 2012 at 11:08am

YES! Off carb counts due to vacation, honeymoon ending ( she is 10 months out from diagnosis) eating more desserts due to being with friends and other kids and not wanting my kid to have to miss out! Going to six flags, where everything is coated in corn syrup... AND my belief that her sugars were due to my husbands crappy diabetes care and pod failures when it was really JUST THE DIABETES!! I have to take responsibility for that part... after a tweak up in basals and carb ratios, she is back to level again!! I actually owe a formal apology to insulet now... I believe...

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Permalink Reply by jrtpup on April 8, 2012 at 2:19pm

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!

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Permalink Reply by NatalieHodge on April 8, 2012 at 2:47pm

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...

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Permalink Reply by Jacob's mom on April 8, 2012 at 2:31pm

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

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