For at least the last three weeks my middles has been high.
Above 200 almost consistently. So this is the end – the real end of the honeymoon stage.
He was diagnosed almost a year ago – Aug 1st of 2013. A day that will live in infamy along with Feb 7, 2007 (Sugarboy’s diagnosis date) and April 19, 2009 (Sweetstuff’s diagnosis date).
His diagnosis date wasn’t as traumatic (at least not for him) as Sugarboys (nearly lost him) or Sweetstuffs (required 1 night in hospital for high ketones and dehydration). Middles was diagnosed after a confirmatory OGTT (oral glucose test). He had failed the same test in June of 2013 and the second test was to confirm that his Tcells had truly begun to walk off the job. He wasn’t hospitalized and didn’t require any IV anything. He didn’t even start insulin for another week or so and even then it was only 1 shot of long-lasting insulin. No meal time insulin for another 2 months.
For the last almost year he has been on smaller doses of insulin than even his younger brother (7+ years in, but half his size). Over the last few weeks I have had to nearly double all his ratios of insulin – correction factors, carb ratios and basal amounts. (Sorry for those not in the know – lots of pump/insulin jargon there – if you want to know what any of that means message me). Seriously DOUBLED it all. Still he is hovering in the low 200s most of the time. Today I will increase his basal more.
I do my very best to keep my remarks to him after hearing a blood sugar result as non-accusatory as possible.
It isn’t his fault. I know that. I try hard to make sure he knows that.
It is true that of all my kids he is the most likely to ‘cheat’. To eat ‘little’ things without dosing (a tiny cookie that is only 7 grams, an 8 oz glass of milk that is 12 grams, a granola bar that is 11 grams). In the past he would just forget he could/should dose. But that isn’t the case the last couple weeks. He is well aware of how many highs he is having and has been diligent about dosing. That doesn’t mean he has stopped all the snacking – now he is just dosing for the ‘little’ things.
Some of the highs may be because he does snack so often – never allowing his body to catch up but that doesn’t account for the morning numbers in the 200s or other fasting numbers in the 200s. His body just seems to be becoming more insulin resistant.
He is a scrawny kid. All skin, bones and muscle and he is always hungry.
I can’t imagine how all this plays with his emotions. I hope he isn’t feeling like he is failing. It isn’t him. It’s diabetes and diabetes is an asshat.
He will put on his Dexcom again today and we will watch the trends. See where he is going and when. We will also try over the next few days to not snack and do our best at carb counting at meals. Please wish us luck.
11 thoughts on “It’s Not You – It’s It”
Wishing you luck! And also sending you love…so very much of it. I know I rarely comment, but you and your family have stayed in my thoughts and prayers. *HUGS*
Thanks Lyn. Its always a bit scary to be doing so many increases especially right before my boys heads off to sleep away camp – thankfully its a diabetes camp so I know he’ll be in good hands.
Good luck! In the days of “tight control” (versus my day, where you only corrected a BG over 180 and only if that was before breakfast or dinner), I have no idea how you manage the unpredictability of a honeymoon phase. It’s just remarkable that you do, and now that it is (possibly?) over, that just means that the rates…once you figure them out… will stabilize. This is actually a good thing. And you’ve got my compliments for getting through the past year (and all the ones before that) as well as you did.
They may stabilize but also be all over the dang place due to the beginning of puberty. Alas – roll tide.
Good luck! I’m sure so many changes all at once is really scary. I’ll be thinking about y’all.
Thanks – hoping I didn’t make too many changes prior to camp. I know he is in good hands and I will get him back in generally the same way I left him – hopefully with a bit more diabetes knowledge and a should cleansed by being with his people.
Good luck!!! My son, 9 years old, diagnosed around the same time of Middles was told when when we went our last endo appointment that his A1c of 6.5 (they want him at 7.5) was too low…so we just let him hover around the 200s hoping for a higher A1c next visit to avoid a lecture…but really it’s about how he feels and where he’s comfortable…Again good luck!
sending you a private email.
Great to “meet” someone with a similar diagnosis story. Our 2nd oldest was officially diagnosed in May after failing her 2nd OGTT. 😦 No insulin yet, we’ll see how long that lasts. I came over from Bigfoot Child Have Diabetes.
I would say growth spurt possibly?
yes very likely a growth spurt combined with the last of his islet cells closing up shop. I love that readers have found me via BFCHD and I wish I could figure out a way to effectively send readers to Katy’s blog and others. I tried adding a plugin that does what Katy’s site does but it slowed my blog to a crawl and thus the plugin would be useless if no one could open my page. Still working on it.
We only did a week of no insulin at all. we added long acting – I insisted – in hopes of prolonging his honeymoon.
Im sorry for your 2nd diagnosis – Im sorry for your 1st too. Multiples are not the norm and membership to our club sucks but the members are amazing.
Just mention her in a post. That’s how I found you. Sorry about the plugin. 🙂 So far our 2nd’s bs is high-normalish so I’m waiting for her first appointment next month. It kind of sucks but is kind of good, our 2nd oldest is in a different city TrialNet center than our ped endo office so it took a while to get an appointment. Unfortunately, but weirdly this is our 3rd diagnosis. I (mom) was diagnosed in 2012 (also through TrialNet), sort of like Bigfoot but mine was more advanced than hers. You’re right, “membership to our club sucks but the members are amazing”. I’m finding myself searching out other moms with multiple children who have t1 lately. 🙂