Good enough or had to back off a bit

you are most welcome Claudia:cwds: I can see the pain in your words and remember all to well feeling that way myself. I felt like a failure and that I was taking a huge risk that Steven would end up with those horrible complications we've all read about. I now believe that if we do the best that we can our kids are going to be just fine and if we can take a step back, so will we

 

Becky---thanks for your post. I am 94 days into this and still in the obsession stage. Although at times I wonder if I am obsessing enough? Am I letting them eat too many carbs? Should I be getting up more in the night than I am? I worry all the time. If my daughter falls asleep in the car I panic now where I used to enjoy those peaceful moments. Hopefully I will get to a calmer, more relaxed state.

 

Heya Dave,

I think you're stuck in a "aaaarrrrgggghhhh" moment. I think that's totally normal. Chin up!!

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Just wanted to say that it's funny how this thread does not meet the "resistance" had it been posted by others. I say this in the most diplomatic way. I think this issue has been raised by others in the past, and it is a very valid issue. But it has encountered a lot of criticism before and hissy-fits were thrown here and there. Whether it's the "perceived tone" or not, I don't know, it's just interesting to note. I wish people would not jump the gun so fast when others bring up "delicate" topics.

OT comment over. If you feel it's out of line, I'll delete it.

 

Not at all Paula, I do want to point out that Ive just tried to tell people a bit about my own life experiences here and in no way was suggesting that others follow suit or back off on their d management. I just want people to realize that its normal to get obsessive about d and that for me it was necessary to back off a bit and say "Good enough" :cwds:

 

I totally agree. Right now, the micromanaging for me is a bit easier - he's 2. I micromanage everything in his day

But in the end, what I want is my son to be happy and healthy. Diabetes is a part of his life, but it is not his whole life. He's Christopher - a cute little 2 year old terror, who just happens to have a Pod on his bum

 

I hope I get where you are one day. I still micromanage and STRESS!! His numbers still dictate my mood each day - especially when he is sick. He has Strep Throat right now and it is making me nuts. Luckily, it was because of his #s that I took him to the dr. (we are headed to Disney World tomorrow and because he is already on antibiotics, his ped told us to go and have a good time!) Hmmm...now I get to worry about him going to 350 when he sees Goofy and Mickey, then dropping to 60 from walking around the parks...

Oh, but a good thing - we switched peds (his old pediatrician's office was too busy and I felt they could not give quality care - they messed up royally a few times) His new ped. not only KNOWS many of the docs on K's endo team (she used to work in the building with them) but has wonderful knowledge of Type 1 D. That has helped me SOOO much b/c I feel like we have another person on our team! (which equals less stress!!)

 

hey...I listen to everything you all have to say....so thank you for this. Having been away from JJ and 'D' for the past 5 days, I feel wildly out of control, although daddy and the grandparents are doing a great job managing without me. It makes me think of all those single parents, working parents and parents of kids with more than one child with D or other complications that I think "My hat is off to you"....you should all be proud at the time and energy you put into your kid's health and managment of D. And taking a step back every now and again is not only healthy but absolutely necessary....

 

This is so true!! I used to have trouble hiding my reaction when Id test Steven and he'd be high. He started looking at me and saying "whats a matter Mom is my number bad?" that woke me the heck up!! I told him one day that no numbers are bad, they are high or low or in range. When they are not in range we can easily fix them so they are. I also try not to ask him if hes ok all the time. I had a major problem with that early on, now I watch and wait.

 

I think it depends on how you manage D... when we used manage with BG checks, each BG check was a potential surprise, and the surprises were often dissapointing. Plus, based on a single reading, we really had no idea what to do next. Micromanaging with BG checks seems like a nearly impossible task to me, there simply isn't enough data to micromanage when you only have a number every hour or two. Since starting with the CGM, the micromangament happens all on its own without much effort or even thinking about it (just a little less sleep...), and there is a feeling of "we can see clearly and WE are in control" which is great for both us and our daughter. There are no mysteries, phenomenons, dawn or symogi effects, hypos or rebounds, worries or fears, basal tests, logging, or any of that, she just takes insulin when BG is high and eats carbs when BG is low, and programs basal changes when it's obvious that they are needed. Bottom line, I think micromanaging could be very stressful if managing with BG tests, but not necessarily that way if you use a pump and a CGM. We opt for the pump and CGM because in the end, it's not how I feel about micromanaging my dd's blood sugar that matters, it's how her internal organs and her emotions feel about it, and using the pump and CGM I feel that we get success on both counts. The micromanagement we achieve is just a nice side effect.

 

I have definitely had my micromanagement moments, then backed off. Yes, I think the first two years were the worst because of so many changes in his needs, from NPH to Lantus, from no lunch shots needed to needing shots, then coming out of his honeymoon about two weeks before Kindergarten. That was real fun trying to teach the nurse and not really know what he was going to need when school started.

Anyway, last year was good, this summer sucked, and since school has started it's been even suckier. I decided over a month ago that trying to figure it all out was going to make my head explode, and I'll just wait until our appointment (next week) to sit down and make adjustments. I decided to just take a mental break and prepare for whatever the doctor suggests I start doing.

 

I'm 5 years into his, and couldn't agree with you more! That's why you haven't seen me around here so much lately We've been too busy living, and enjoying life. But, as I said in another post, we need to buckle down a bit and get us a little closer to the track right now. I know coming back here will help in that regard!

It is a good message to share. Sometimes you just need to back off a little, while other times you just need to take the bull by the horns and tackle the tough stuff (with help from everyone here). Surprisingly, I think giving yourself the break is harder at first, because of the surrounding (usually self-inflicted) guilt.

 

6 1/2 years into this...I think this is how I've always done it. I pay attention, w/o micromanaging. I change ratios after two days rather than giving a lot of corrections, we rarely correct other than meals.

I probably should write things down, but I don't.

Seth tests on average between 5 and 9 times a day depending on what's going on, this give me the info I need to make changes.

I only test at night IF there's a reason. Sports for example.

I'm only saying this to show it's possible. We have never had an A1c over 7.6 The first at the onset of puberty, then three more times in a row when Seth's dad had him three days in a row and he wasn't communicating with me very well The ex started communicating after I pointed this and Seth's A1c went back down to 7.0 The rest since dx'd have been between between 6.6 and 7.3. I'm OK with that, it will get even better after puberty.

Seth was 7 at dx'd if he was younger I'm sure some of those would have been higher, I can't imagine having a baby or toddler with D.

Excellent post Becky

 

This , IMO, is VERY IMPORTANT. Took me a while to figure this out, and we ended up having crappy A1cs because it took us a long time to implement changes.
We are way more proactive with adjustments now. We don't do the "wait and see" approach anymore. We see a tendency to go high after a meal, so we adjust the bolus for next time. We see a tendency for resistance or sensitivity, we adjust the basals for the time in question.
I think this has helped us with curbing ketone appearance as well. Because we were not being aggressive with changes, and with corrections, we had ketones more often. I see ketones sometimes, but they have gone quickly away, because we just jump on them with aggressive corrections.
I am not saying that this is how to make sure you never get ketones, but in our case, I know that has helped.

I think that what you're saying, Heather, is very eye-opening. D is not static, IMO. Neither can our handling of it be.

 

Becky, I can certainly see your point. I'm living it. 1 year, 4 months and 8 days into this, I'm still obsessed about every little thing. I live, eat, breath, sleep, dream diabetes. I'm constantly carping on Alex about eating this and that, forgetting insulin, neglecting sugar checks. Always talking about wonky or ugly numbers. Worried about the A1C and how everything she's doing now is affecting it.

I am guilty of forgetting that at the other end of all of my obsession/anal retentiveness is my beautiful 8 year old girl.

My bad. I'm trying. It's not easy. I'm hoping I can let this go, a little bit at a time.

 

No Barb, not your bad! so normal, thats why this thread is here. And yes its not easy at all. I had to learn to let go and let God and practice the Serenity prayer on a daily basis. Thats what works for us. We all have to do just that. What works for us.

 

Another thing I find is important to do, for the sake of the other siblings, is to make D so routine, you hardly notice it's there.

We test Ian very matter of fact, while speaking about other non-D stuff.
The meter is not allowed to sit at the table while we eat.

So D is there, but not the first and last thing we speak about. We have a second child who sees a lot of what is going on, and we have to consciously remember that, for his sake too, we have to back off a bit sometimes.

Hope that was clear.

 

To be honest, I don't think I would be in this place of "it is what it is" without some of you! Do I worry about his numbers, of course, but do I let it rule my every waking moment? Not any more. I did at first. We are just over a year into this and if I had kept going at the pace I started out at, I would certainly have lost it by now.

The one thing I need to get better about is what Paula & Heather mentioned and that is making changes faster. My problem is that we seem to bounce back and forth every day. So three days in a row of the same ratios will yield different results. It seems like an every other day thing, which drives me nuts. So we do log everything so that when something is bothering me I can look at it or send it to our CDE and get some advise.

I think part of it is I don't fully have the confidence in changing ratios myself yet. I don't think I have enough experience. I just need to suck it up and know a minor change here and there is the best way to learn and at least I have the Dexcom to alert me if I am wrong

 

We also see different results each day with the same ratios. We never change ratios, though...
the variation is due to changes in basal. We just correct for the changes in basal with additional
carbs or insulin, as needed. We haven't changed any ratios in a very long time.