12/11/2017 - Almost 2 years in - Endo Checkup

Parenting a D-Child Toddler
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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.

  1. 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.

  2. 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.

  3. 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.

  4. 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.

  5. 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.

  6. 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.

  7. 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.

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39 posts were split to a new topic: GI Issues: suspecting celiac

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This was a pretty great 2-year exam for a toddler. You guys have done amazingly well, and what you have brought him to after these two years is quite amazing.

FYI that is true for us too, but it does not worry us as much, in part because most of these lows are not: after treating a low early the Dexcom stays low but my son is higher. I wish he would be able to stay away from lows more mostly because I would like him to be able to stay very hypo-aware.

Hang in there, Harold. All of us are going through the cycle… Moments when everything seems to be hard to deal with. For sure we have had a lot of these lately. But the other side of the card is how much better we are doing than we would if we weren’t so focused on figuring out how our kids can be treated best.

Your friend Michel

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Sage advice. Hard to practice, but good advice nonetheless. Hang in there, and keep battling. Great A1c btw.

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As someone who is currently dealing with anxiety issues, I am so impressed with that attitude in the face of the challenges y’all are facing, even with Liam “just” having type 1; I would be a basket case. Keep up the good work/attitude! Y’all are doing such a good job caring for Liam; he’s a lucky kid.

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Congrats on the good checkup!

Don’t worry, there is always room for anyone to improve! Who amongst us can ever say we are done improving.

It sounds like your endo is great. That’s awesome. Things like helping with the prescriptions and all of that is super. Happy to hear that.

Hopefully you will get the GI stuff figured out. Make sure to ask about Crohn’s Disease just to get that ruled out, but that often comes with abdominal pain too, so hopefully that isn’t an issue.

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Freezing the thread for a few minutes to split it.

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A post was merged into an existing topic: GI Issues: suspecting celiac

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Reopened after split :slight_smile:

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Hey just wondering how your GI doctor and testing turned out? We are currently also dealing with possible celiac diagnosis after T1 (separate thread here somewhere) and just wanted to say our parental reaction was pretty similar, as in… you’ve gotta be freaking kidding me…of all the lucky kids in the world with T1, my kid gets to be the extra lucky 5% who also gets the gift of celiac?? And we also have 4 other kids in the picture and it does impact them in cutting out cheap, fortified foods from their diet (not to mention the thought of the grocery bill makes my eyes cross…). People who are GF are really encouraging that it can be done and mean to make you feel better by saying so, but I think it’s totally natural to be sad that your kiddo might have to deal with this too.

Hope it’s not so in Liam’s case. I will say the endoscopy/anesthesia/biopsy thing was way less of a big deal than I expected…he wanted to stop for ice cream on the way home :grin:.

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Due to events that unfolded in our lives recently, we had to reschedule Liam’s GI appointment. Since they only have like a single appointment in a month it seems, we’ve had to reschedule to March for his appointment. The reason this isn’t of critical importance to us at the moment, anymore, is that his loose stools cleared up. He’s been going “regularly” for the past few weeks now, but we still have to make him go #2 in the potty or he’ll hold it in. We somehow believe this was our issue…he just didn’t want to do #2 and he was backing himself up badly. He’s now doing #2 and his stools look exactly how they’re supposed to look. We still need, and want, to talk to the GI doctor, but since his immediate issue cleared up, we believed it to be safe to wait until March to talk to the GI doctor (too many other irons in the fire at the moment.) We still also have to get his umbilical hernia checked out because when he was born they said if it didn’t fully close on it’s own by 3 or 4 years of age, we should consider surgery to close it up fully. He still has a small hole that we can sometimes feel his intestines poking through when he’s throwing a fit.

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Thanks for the update. I was wondering. Glad to hear the sad tummy troubles have cleared up for the time being. That’s good news. And congrats on the potty use! Seems like good timing. :slight_smile:

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Glad to hear it’s improved. That’s very interesting…in the past week or two, my daughter’s issues have also just mysteriously cleared up. :woman_shrugging:

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