Liam is coming up on his 4th birthday at the end of this month, and before our next Endo visit in March, he will have been Diabetic for 2 years (Feb 29th).
Today’s visit was awesome, A1C wise, but I wasn’t feeling as elated during our last visit at the news. His A1C was down to 6.3%. That’s great news…but I’m not satisfied because this was an especially rough 3 month period for Liam that resulted in far too many lows and severe lows…his 7, 14 and 30 day “severe lows” are at, or over 2% right now. Lots of sicknesses and he’s had “loose stools” since our last Endo appt, 3 months ago.
Our Endo has referred us to a GI specialist to see if they can figure out what’s going on. Last I checked in with everyone I had told you that his regular Pediatrician put him on a highly recommended child probiotics…those didn’t work. So, the Endo wants him to get a biopsy. We had labs ran last time which came back negative for Celiac Disease, but she observed this his AGI count was only 15 and that’s very low…so low that it could have potentially enabled a “false negative”. So, the only way we can be sure is to have an actual gut biopsy done on him. We have the referral and will be getting this set up as soon as possible. We looked up statistics on diabetics WHO ALSO have Celiac is only 3 - 8%…and we were just thinking how f’d up it would be if he also had this, in addition to diabetes because it would all but eliminate all the foods he currently eats and loves. We had hoped not to need to follow any specific “diet”…but IF he has celiac, then we’d have no choice for his health. We’ll keep everyone advised.
So our A1C was great…yay. But I know we had a lot more lows this 3 months due to him being sick a lot, having some very long prolonged, and stubborn, lows, and the fact that we’re just so exhausted that I have honestly been sleeping through some alarms…we’re buying the recommended device that I can plug into something that will wake the dead, but as always - there’s work to do and it’s never good enough.
My goal for the next…foreseeable future, is to not worry about the A1C. As long as he’s between 7 and 8% A1C, that’s plenty good enough for a toddler because his brain growth (having no, or very few lows) is more important than a really low A1C. So, I have some changes I need to make within myself.
-
Settle for post-prandial spikes because micro-bolusing causes unnecessary lows (sometimes)…most of the time I treat these before they ever go low, but sometimes he just crashes before the correction can kick in.
-
Adjust I:C. We believe these are off at present (and the reason for my micro-bolus requirements.) So, over the next couple weeks, we plan to re-test to get updated I:C rates.
-
He eats breakfast pretty much the same time every morning. Because of this, in addition to refining his I:C ratios, we’ll be applying more basal during those morning hours to cover some of the rise that we know always happens after breakfast.
-
A super low A1C doesn’t mean ■■■■ if it’s achieved by having too many lows. So we need to accept that we are comfortable with a higher A1C for now so that his brain is developing as it should. Once he’s older, we can let him go low w/o the severe implications that being low now could result in.
-
Figure out what’s going on with his GI issues. The Endo indicated this whatever is going on inside his tummy could be impacting his ability to process the foods correctly and this could explain many of our inexplicable highs and lows (and severe jumps up and down in BG). We just have to get this figured out.
-
We also have to figure out what to do about his umbilical hernia…nothing to do with Diabetes, but when he was born, we were told that this should close on its own in 3 - 4 years. And if not, they would need to do surgery to close it up. It’s not closed and, of late, it’s seemed to me that it’s getting worse, not better.
-
Accept whatever comes our way and kick it’s ass, because we have no choice for Liam - who is my world.
Lastly, we re-worked our prescriptions. We are switching to Novolog Pen / cartridges (instead of the novolog vials), and she’s writing us up for Lantus also. She also added Alcohol wipes, Unisolve and Dex4 Tablets added as “prescription” items…why? Because, under our insurance, if we do a “bundle prescription” we only have to pay for for the insulin (usually $100 or less for a 90 day supply), then everything on the prescription is free. So she agreed to add a bunch of other stuff to our prescription. This helps with the $$ and it also helps us use our HSA pre-tax money on more covered things.
Also, sorry I’ve not been around much lately also, but it’s an especially hectic time in my house, at my work and with Liam (and my other kids), right now. All in all, I’d say we’re doing OK, though…but there’s always room for improvement.