When did you start self adjusting doses without calling into the dr?

MelissaAL · #1 10-03-2012, 12:10 PM

DD was diagnosed almost 7 months ago. The first 5-6 months, we would call in her numbers once a week to see if they wanted to make any changes. Then it was, just call if you see a pattern emerging that needs attention. For the last 3 weeks, she's been having alot of high numbers. We think she's hit a growth spurt and needs more insulin. They seem really slow to make adjustments. First they just changed her breakfast ratio; then she was low at lunch or mid morning. So they moved that back to where it was and changed dinner ratio. Now she is running low at bedtime or before if she is at all active in the evening. Sigh.

I guess this is the first time the changes the Dr made haven't improved things. I know they are busy with other patients, etc and I know since we are with her we see firsthand how things are going. I just want to do the right thing.

ecs1516 · #2 10-03-2012, 12:16 PM

It was so long ago for us I can't remember when I started making changes on my own. I do remember having the problem you are having (changes causing lows etc.) so I started making say half the change at a time. For example if our ratio was 1:20 and they wanted to 1:18 , I would try to do a 1:19. I would do quarter units if possible using a syringe marked with half marks.

MomofSweetOne · #3 10-03-2012, 12:22 PM

I was frustrated with feeling helpless that I didn't understand how they were adjusting doses until I found Think Like A Pancreas about two months in. Suddenly, I understood how and why they were adjusting things. I think I started then. By the time her insulin needs went through a dramatic increase at 6 months, I increased her 1/2 unit at a time every night to try to stay up with her needs. Our doctor was thrilled and told me that most families they work with will let the kids run in the 200s for two weeks before calling for help. I hadn't even realized that adjusting like that wasn't the norm. I'm very thankful for a team that is supportive of my adjusting her levels myself. I have friends whose endo-teams are not, and they've been frustrated with the numbers recommended or the level of control the office is satisfied with.

MelissaAL · #4 10-03-2012, 01:02 PM

Thanks. I have Think Like a Pancreas from the library and I am trying to get myself in the mood to read it. It is funny, I am scared the endo will think we are stepping on their toes if we adjust ourselves.

pianoplayer4 · #5 10-03-2012, 01:06 PM

Two weeks after dx... My mom called in to tell them I had gone low over night and the doctor said "hmm, well why don't we try x units of lantus and see how that works" My mom was like 'wait... you're just sort of guessing? their isn't a formula that always works?' and after that we just did it on our own... maybe called in once or twice after that.. but really not much.

But my attitude towards my endo is very rare... It's just the way I do it and it works for me

Amy C. · #6 10-03-2012, 01:07 PM

Quote:

Thanks. I have Think Like a Pancreas from the library and I am trying to get myself in the mood to read it. It is funny, I am scared the endo will think we are stepping on their toes if we adjust ourselves.

Nonsense. The endo would love you for taking over.

MelissaAL · #7 10-03-2012, 01:16 PM

Quote:

Originally Posted by Amy C.

Nonsense. The endo would love you for taking over.

Then why don't they tell you that? Or do they just assume you'll do it when you feel ready?

3kidlets · #8 10-03-2012, 01:22 PM

Quote:

Originally Posted by MelissaAL

DD was diagnosed almost 7 months ago. The first 5-6 months, we would call in her numbers once a week to see if they wanted to make any changes. Then it was, just call if you see a pattern emerging that needs attention. For the last 3 weeks, she's been having alot of high numbers. We think she's hit a growth spurt and needs more insulin. They seem really slow to make adjustments. First they just changed her breakfast ratio; then she was low at lunch or mid morning. So they moved that back to where it was and changed dinner ratio. Now she is running low at bedtime or before if she is at all active in the evening. Sigh.

I guess this is the first time the changes the Dr made haven't improved things. I know they are busy with other patients, etc and I know since we are with her we see firsthand how things are going. I just want to do the right thing.

Pretty much right away. Hana was on a sliding scale coming out of the hospital. It didn't work. she was hungry, wanted to snack and I knew that we needed to be more flexible. They don't teach carb counting to new patients at the hospital we were at. They said I had to wait until our next endo appt. which was more than 3 months away. So, I researched a bit (Think Like a Pancreas and coming to CWD) and figured out her ratios and correction factors. I only called in questions about her BS the first 2 weeks after we got out of the hospital. We've been on our own ever since (2 1/2years).

valerie k · #9 10-03-2012, 01:29 PM

It was drilled into us enough that three days makes a pattern, and we should look at changing after that point. I was very hesitant, again, thinking like you, I would be stepping on thier toes, however, they are trying to teach us just to do that... make those changes since we are first hand in the trenches. Its exactly what your childs endo wants you to do. Good luck, after all these years, Its still hard for me to do. but do it I do.

DsMom · #10 10-03-2012, 01:39 PM

It took me way too long. The whole time my son was on MDI, which was a whole year after dx...I was dependent on the endo's advice and would call in numbers every week. They never suggested that I try things on my own, and I was scared to make a mistake. After switching endos, and starting my son on the pump...I did rely on the pump trainer for the first months. But, eventually, I began to see that I was disagreeing with her suggestions once in a while, and would try it my way, and was thrilled to see things work out. I really gained confidence after coming to this forum.

I didn't really know I should be making my own changes.

My sister raised a daughter with T1, but I wasn't with them on a daily basis, and had no idea how she knew how to figure insulin doses. I really wished the docs would have pushed me out of the nest sooner...but it finally got through my thick head that I could do this on my own

...and that it was much more efficient and effective when I did.

Definitely stretch your wings. If you are worried, call them first and tell them what you are thinking of doing...I'm sure they'll approve...and then do it. You'll gain confidence and soon won't need them at all. You know how your child reacts best. I never consult his endo anymore...unless my son is very sick and I need help with that.