First diabetes vacation a nightmare, pods unreliable?

Type 1 and LADA Parents of Children with Type 1 Diabetes
21

thanks, we are tweaking and things seem to be falling in line with a 5% basal increase and carb ration changes... she is definitely getting into preteen hormones, she is almost 12... so I hate to blame so much on the pump because we just are not really sure. We did figure out about 1.5 units with the pod change seems to help that come out about right, and we are testing .55 unit an hour basals now that we are back home. I wish we had been better prepared... we did not bring our scales as we use at home for carb counting, so having that off and eating more desserts make it hard. We happened to visit an old friend who also has kids, so you know how it is, when the other kids want to have iced cream all the time, it is so hard to let your kid be the only one not having it...

my daughter francesca who is 5 says.. "Mommie, I hate diabetes"

She'll say, " Remember before Kennedy had diabetes? We used to do blah blah" you can fill in the blanks..

she likes to help with things, because it's practically the only time I'm spending with her...
thanks for being there, as I read back through my post, it is a horrible rant, I'm better now, now that we're home.

22

oh, I forgot to mention, she was diagnosed last summer june 30. she is in her tenth month of honeymoon, so that's bound to be over soon... she uses about 25 units a day of insulin now, up from 20 units a day for the prior 4 months. She is 30k, so her endo says that once she's on one u /k /day they consider that out of honeymoon...

23

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.

24

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.

25

dont worry about the rant! in the heat of the moment it is really hard to handle and see the big picture.. i thought of two more variables which you may have thought of also, but restaurant food .. so hard to estimate and the fat bites you in the but later, we have been thrown some serious curve balls on vaca due to sausage and icecream shakes! we try to let him have what he wants and work around it best we can.. also excitement the first time we went to a movie after D jacob was over 400! band concert same thing.. stress good and bad effects bs's disney world lots of stimulation.. i cant image dealing with all those comments from your little ones, mason is 11 and is a good fit into our D family pretty tolerant and laid back.. life is way to hard sometimes.. i hope you can find some sanity in there for yourself, hang in there natalie we all walk the walk here and feel your pain, here's hoping for better days and maybe some alone time for mom! amy

26

I replied to the original poster's thread first. I replied to Gary's slight diversion and I mentioned the problems with irregularity and NPH are similar to problems with the omnipod? Gary has been around for a while and I can't resist discussing some of his issues in these threads and thought that it was germane to attempt to present a counter to his suggestion that shots are easier and better and there's no way to get a handle on diabetes as I didn't feel that was appropriate to the context of the thread as there wasn't quite enough info to interpret the orginal poster's problems? I don't think that was "wrong" or "incorrect"?

27

Natalie, my daughter id db1 since being 14 months old and now she's 3,5 years old (and celiac...).
Our other daughter is now 5.
We are growing them up together, anything equal: we don't want to put them one against the other. I think it will be hard when they grow older, but it will specially due to the celiac desease, not diabetes.
I let her eat "broadly", I try to do the calc and I measure a lot.
I think measuring a lot is due when thing changes, and that happens often.
When her BG is high due to an "extra food" I'm not upset if she's having goog time.
I'm upset when everything is controlled and her BG go roller coaster anyway.
Your daughter is 12: I think you chose right to go for the omnipod.
At that age is actually much important (and hard) to look good and love herself, her body among other things.
If she gets a few highs but she grows good in her self-respect, you did a good job.
I thought often insulin was guilty for her highs, but it was never a ruined insulin the cause, usually it was me afraid of giving her more insulin than usual: things change fast.
As for husband and wife, diabetes can be a "couple-breaker".
Tell you husband and explain him what you are doing and thinking about your daughter therapy: diabetes is a 24/7 matter, you can't avoid sharing it with your husband.
But you both have to never forget your daughter is as before diagnosis: don't let diabetes hide her. Enjoy her life, let her enjoy hers.
English is not my mother language, I hope I got you my feeelings.

28

I don't see a problem with side tracking a bit ,if that's what it is called , unless Natalie feel we are heading of topic ??
In my mind Natalie is covering several tough concerns ?

29

If there weren't some sub-threads, it wouldn't be TuD LOL

30

Hi Natalie.

I have found that there is a "vacation factor". After doing this for more than 5 years with Caleb from the age of 3 and now he's 9, it always seems that no matter how consistent I try to make the vacation environment, there is some nuance to it that makes all the regular rules go out the window. We can keep the same hours, eat the same foods, but there's always something different. I try to always prepare myself mentally for that, and it helps. We've been through so much over these five years and 99% of the time, it's not a Pod issue. But because we can't immediately identify the problem, that is always a consideration and the unknown nature of it all only increases the stress of the situation which can compound the issue. At least that has been the case for us. Since accepting that it's not likely a Pod issue, it's a little less stressful, although I still tense up when arrows start to go up and I can put my finger on the reason.
I'm sorry she did't enjoy her vacation. I remember our first vacation with diabetes - three months after he was diagnosed, at Universal Studios on shots. Tears (all mine) on a daily basis. But I think Caleb actually had a good time. I hope you can look back and find some happy memories after it all. Hugs. -Lo

31

Hi Natalie, I just want you to know how much I admire you for all that you do as a young mother to care for your daughter. I know as a mother that we would take it all upon ourselves if we could free our child of any struggle. And after being married for 28 years, I also know that anything going on with a child can bring you together or push you apart and sometimes both at different times. I would imagine that goes ten-fold for parents of children with diabetes. Just keep working at it.

I use OmniPod and just came off a vacation myself. I had some issues with control as well but I know it was not the pods. I was on MDI for 25 years and had bg issues on every vacation I've ever taken. For me, it's a combination of excitement, different schedule, different activities, and eating out/eating different foods.

Diabetes care can be disruptive, even for adults. We stayed in a suite at the hotel so I would have a separate area to test, treat, take insulin, and change Dexcom sensors and pods without keeping everyone else up all night. That worked well for us as I had to get up to test or take insulin or treat from my post restaurant meal high then subsequent crash.

Had absolutely nothing to do with my pod; had everything to do with being a PWD-on-vacation.

32

Natalie, sorry about the vacation :( We had the same experience last summer on our vacation to Disneyland. 200-300 constantly. No swinging to lows but at least to a normal 110 by morning which we attributed to Sophia still being on the honeymoon and a good 12 hours w/ no food gave her body time to get back to normal. She was 5 at the time. The 2nd to the last day we were to leave for home we noticed her PDM was acting weird. Turning off/on, moving to different screens on it's own, etc.... Well, that was what was causing all the problems. They told us to just change the batteries (although the charge said full) so we did. Then we had to treat low bg the entire flight home!!!!! The new PDM was on our doorstep when we got home and literally w/in an hour her bg was back to normal. UGH!!!! At least my husband went home for work after the 3/4th day out of 9 ;) but it is stressful. I completely understand the not knowing if it's the pod, your settings, etc...
I am in the medical profession too and I also handle about 95% if Sophia's dm management. I know it gets to be a lot at times. It can be very stressful on marriages and the other children as well.
Here's to getting back on track :) Lori

33

How are you defining “hi-jacked”? I don’t think it’s “defined” or “prohibited”? I understand your concern, which is why I stopped answering Gary, however I think that accuracy, whether it’s 53% for NPH “peaks” or 80% for pods working well, would be of concern to anyone? I’m also glad to have replied to the thread to have kept it on the front page where more specific answers were provided?

34

It's polite to the OP stay on topic. While Tu is closely monitored, not every comment can be read in an active community of this size.

35

I hadn’t run into the OP and felt it important to present a case refuting Gary’s on topic suggestion that “you should go back to shot’s, it’s easier and cheaper”. I don’t see our dialogue as having been that far afield. The “main question” of the OP is “should I go back to shots” and “is there any hope”, nothing about pods, insulin, vacations, counselling, families or anything else most of the other posts are talking about so, under tht definition, the other posts are as impolite as my post, if we want to start thowing yellow flags around??

36

Mine was a general statement. It's not directed at anyone. My comment isn't indented under yours as a reply to you. It shows up under yours because that's what happens after a while when there are numerous replies to comments.

37

There's a ton of great support from other parents of kids with diabetes in this thread, but I don't see any kids with D talking about their PARENTS! So I'll do it :)

I'm not a kid any more, but I WAS a kid with diabetes, so I have that perspective on the dreaded "vacation with/as a diabetic kid" experience. Indeed, vacations are a total minefield for a diabetic, and especially if you're young and don't have a lot of coping strategies in place yet. I remember very well being really excited, along with my parents and siblings, to go on a trip, only to realize over and over again that the exact stuff we were all looking forward to (fun new activities, sleeping late, special food...) was all going to be problematic for me and cause me to spend much of the vacation feeling pretty bad. It can feel like a total bait-n-switch as a kid, and the height of unfairness.

Here are a few of the things my family did to deal with it:

1. make healthy foods and activities be the fun, special stuff. No one gets a 32oz. coke for a treat because it's bad for everyone, but everyone can have a scoop of ice cream. No one gets to lie on the sofa all day because everyone is going for a bike ride together.

2. my folks let me see that controlling my sugar could be frustrating and difficult for them, too, but that they were always up for the challenge, hopeful and determined to keep at it. No one gave the slightest hint that they thought it was impossible or wanted to give up. I think that's important because it translated directly into my own attitude toward my blood sugar control, and I think it's a pretty good one.

3. I was allowed to get angry and spit a little fire, but no one else was. This is a selfish one, but I really appreciate that when I was growing up I never had to feel like my diabetes was messing up anyone else' vacation (or life, for that matter). If my folks had gotten really upset about it I would have wanted to hide it from them to spare them those feelings, which wouldn't have been good for any of us. At the same time, if I hadn't been allowed to shout about it once in a while I would have exploded.

4. EVERYONE in the family was on board with whatever was good for me, with no argument. This is not to say that if my sugar was too high to eat then no one ate, but that I was accommodated as much as possible with no hint of grumbling from anyone (including my grumbly teenage sibs).

5. when I was young enough to be sent to bed before everyone else they would all wait til I was asleep to break out the dessert. When I got a little older I think they switched to healthier desserts for everyone.

I don't know if any of that is helpful, but I hope so. Strategies are crucial.

Good luck, Natalie!

38

Thanks Emily, what a great post! I rarely get to see a child's perspective.

39

:) Thanks Barbara

40

Nice post! I'd like to hear more of the kids' perspectives too! They end up being sort of 'silent' in a lot of these sagas, even though they are teenagers who probably send 4 or 5 thousand txts/ day about more important things.