And by everything I mean E.V.E.R.Y.T.H.I.N.G!!!
When we were discharged from the hospital 2 years ago Alivia was on a set insulin dose due to the NPH but when we switched over she was at a 1:15 ratio, for you non-d peeps that means for every 15 carbs she eats i would have to inject her with 1 unit of insulin. They warned us that as she grew her insulin needs would greatly increase...but they never did! Up until a few weeks ago she was still on a 1:15 ratio even though she's grown quite a few inches and gained about 25+ pounds! Of course her "Honeymoon Period" was a huge exception but that didn't last long at all! And sure there were times when we'd start to see a pattern of higher numbers and we'd bump it up a tad only to be greeted with constant lows, and so we changed it back to her "normal" ratio. Same thing with the Lantus and now her basal rates, we started her on an insulin pump over a year ago we spent only a few days tweaking her basal rate and what do you know it was the same rate of .250, 24 hours a day 7 days a week and has stayed that way every day since!
Even her ISF (insulin sensitivity factor) has stayed the EXACT same since day one! 1:200, once again for you non-d peeps :) 1 unit of insulin lowers her blood sugar 200 points, for example blood sugar of 400 would require 1.5 units of insulin to bring her blood sugar back into her target range.
It was pretty smooth sailing, hardly any lows under 60 and only highs due to Mommy mess-ups and bad sites, and she hasn't had ketones since dx. Life went on and diabetes sorta faded into the background.
Fast forward 2 years to present day and then go back 3-4 weeks and we've got highs after highs after highs! Corrections are only working half ass and as soon as she eats she sky rockets AGAIN! Frustrated beyond belief I changed her site 10 times in 5 days, I opened 2 new bottles of insulin, it HAD to be one of those 2 things we've never had it any other way! After 5 very long and frustrating days had passed I finally gave in and started making changes, changes and more changes. Just 3 days later we were finally seeing numbers starting with a 1!!! We finally landed with an insulin to carb ratio of 1:10, basal rates of .500u/hour and an ISF of 1:150. All was right with the world and her numbers were "in range" every single time. Whew, that was rough but we all made it through alive and well (except for that A1c which will be sky high I'm sure!) End of story or so I thought...
Only a week after the return of the "in-range" numbers she was crashing hard and fast all the time. Lows only an hour after meals, corrections during the night bringing her into the 40's and 50's, and lows for no good reason! I very quickly pulled back hard on everything thinking she was just going through a growth spurt and now it's over. Everything was promptly returned back to "normal" and so did her numbers...for 4 days!
The last 2 weeks have been a nightmare! Everything only works for a few days before needing to be increased, a few days later decreased again, then increased, then...well you get the picture! I never know what number will pop up when I poke her little finger. She over reacts to every little thing and I never know if it's because she's high, low or just 4 going on 16!
In a way I feel like we're back at the starting line only the beginning of the last race was all down hill and this time it's up hill! I know so many of you have been going though this from the beginning but for us this is all new and very frustrating!
I do not like change! Or diabetes!
9 comments:
Whew... Sorry it's been going so rough for you two! :(
Same-Same...I have never read a post that describes so well what we go through with Joe like twice a year...the growth, the cranking up on everything, then the backing-off BIG TIME.
I hope things stabilize soon...
I hear ya! My Maddison sounds like your little one, fairly easy the first 2 years, then all craziness! I have always said how much I hate change, man......we sure got the wrong disease to manage!
We're going through a similar phase with Jack right now. We can't seem to keep him in range for any length of time. So frustrating! And for our kids, these swings mean physical symptoms. That's what really gets me. We work hard to stabilize their numbers, but in the meantime, they endure the highs and lows. Hope things get easier for you soon!!!
That is exactly what the past year has been like for us just when we think we have things figured out, the rules change. I thought that this was what every D-rent went through with their kiddos. I hope we can reach some of that normalcy that you talked about so d could fade in to the background. For you I am glad that your baby is at least one before having to deal with the crap D throws at us. Juggling a newborn and D had to be tough enough but add this stress to the mix, I can't imagine! I hope things stabilize for you soon.
UGH! How frustrating!!
Bean's been pretty consistent, just a few tweaks here and there that seem to do the trick. I know the day is coming when we'll be wondering from day to day if it's 'right' just hoping they stay at bay for a while longer!! HUGS!
We have similar issues of needing more insulin then needing barely any. We rarely change our pump settings anymore and just do temp basals and changes as needed because it is too much to keep up with. These growth spurts can be killer.
We've been in the insulin bouncy-house for a couple of weeks, too. Huge growth spurt with nutty highs (especially around 3-4 am) followed by low after low after low. Hang in there...a sweet spot is sure to follow!
Life is hard when children fight life time diseases.Checking on them and keeping them well is a hard task indeed.
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