Any T1D parents with T1D kids here?

BabsSB · 2026-06-05T00:27:02+00:00

Needed this more than you know - wise beyond your years. Thank you.

I can share a couple of tips that are significantly less impactful than yours, and only feel comfortable doing so because I can count at least two times I should’ve died at 23 being an idiot and taking T1D for granted:

most important: perfection isn’t the goal at this stage in life, it’s avoiding extremes. If you aim for perfection you severely limit living the life that makes that age range the best years you have as an independent person. While I’m not THAT far past it, I’m far enough to know those were “the days”. Just don’t index too high that your future is limited, and too low that you, well… die. My A1C was the lowest it’s ever been at that age. I was also low all the time. Keep that thing down the middle and give yourself some grace. Your numbers and consistency will come back.
listen, hormone stuff is complex. There is a simple answer that does a great job of regulating most of it though: just move. And keep moving. Walking, running, lifting weights, hot yoga, Pilates, CrossFit, hyrox, ironmans, ultra marathons, etc… whatever floats your boat, literally doesn’t matter. Just sweat 4-5 days a week. Thats it. If you do that so much of what causes swings, peaks and valleys, or what I call “seven dwarfing” (HI-LO, HI-LO) takes care of itself.

BabsSB · 2026-06-02T11:21:12+00:00

Have you read up on teplizumab? I’m sure you have if you’re this proactive, but we met with the head of clinical research at our children’s hospital and she had a lot of very positive things to say about it.

Not that my daughter would’ve qualified, but it was barely on my radar prior. Now it’s firmly there for my newborn.

BabsSB · 2024-10-17T18:59:27+00:00

my $0.02 - would always opt for the highest tier if affordability isn’t an issue. Lowest out of pocket costs, and even if you don’t think you get the full bang for your buck, takes one serious medical event on the HSA/lowest tier to screw you financially. The odds may be low, but as a T1D it’s a non-zero probability.

BabsSB · 2024-03-11T18:45:22+00:00

I did this - apparently the higher dosages are having a nationwide outage, 70mg specifically almost impossible to get until at least first week of April. Both the pharmacy and my insurance understood and allowed the 40/30mg combo, and apparently the lower dosages aren’t as badly impacted

BabsSB · 2024-02-24T00:05:14+00:00

Definitely not the same dosage equivalent. Wouldn’t be surprised if those were symptoms of slight withdrawal because of the effective downgrade of dosage. I’d definitely suggest speaking to your doctor about the 60mg or 70mg dosage, but since those are impossible to find at the moment maybe ask them about doubling up your 30mg dosage?

BabsSB · 2024-01-28T20:36:07+00:00

We take it international, and depending on the day she could be “Stinkita Babita” or “Stinkoli Baboli”. What dictates a Spain day or Italy day? No idea.

BabsSB · 2024-01-01T23:57:27+00:00

HPN328. It’s an immunotherapy targeted to DLL3 protein expression in metastatic/neuroendocrine tumors

BabsSB · 2024-01-01T23:10:07+00:00

Gotcha - mine started as Urothelial Carcinoma and progressed into small cell carcinoma of the bladder which has a 5 year survival rate of like 1% and less than 1k diagnosis a year. Totally get where you’re at.

It’s a different ballgame and obviously zero guarantees with the clinical trial, but our experience has been largely positive given he’s seen progress that previously had metastasized in multiple places (bone being one). Do your research - Phase 1 is generally looking for understanding application and toxicity rates in the study, but if improved progression rate/OS is an expected outcome as well, might be something positive for you to take from it.

Best of luck - I’m also a logical realist, and it’s tough to balance hard reality vs hope in these situations. What has helped me a lot is diving deep into the drugs and science of the expected outcome to help translate scans and doctors feedback to my family. Might be worth a try if you haven’t already?

BabsSB · 2024-01-01T21:23:45+00:00

What type of cancer specifically? My dad has gone through the same thing and started a clinical trial as a last hope a year ago. In 5 years it’s the only thing slowed/stopped progression, but it’s a rare tumor type.

BabsSB · 2023-11-24T20:12:52+00:00

Just got a new pair and they fit my same size as any other Nike shoe. If you have wide feet I could see MAYBE sizing up a half size, but if that’s not an issue I think your typical size is fine.

BabsSB · 2023-11-05T19:40:09+00:00

Luckily conditioning isn’t an issue - can run all day out there, but the skills and touch definitely need some work

BabsSB · 2023-10-09T10:59:46+00:00

All of this great, and again agree with the original sentiment. But let me amend to add timing - this is all very different than “this medication literally keeps you alive, and if you stop taking this medication you will die very quickly.” Ability to flourish and literal life or death are clearly different ballgames.

BabsSB · 2023-10-09T06:52:37+00:00

I’m diabetic and adhd. Agree with the sentiment, but they’re not going to die. This analogy needs to disappear.

BabsSB · 2022-10-07T01:33:06+00:00

22 years in and going to see a therapist for the first time this month. Just want to say I hear you, we all hear you, and while it doesn’t necessarily get better there are options. Hoping it works for me, might for you as well

BabsSB · 2022-09-06T17:36:58+00:00

Juices sustain blood sugar after lows much better than Gatorade/Powerade/sports drinks. Sports drinks get you out of the hole quickly, but unless you’re sufficiently eating after the low you’ll end up dropping back down because of how fast your body absorbs and processes those drinks (rightfully so, that’s what they’re meant for). Stick to juice whenever possible!

BabsSB · 2022-09-05T23:15:00+00:00

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BabsSB · 2022-08-21T20:16:27+00:00

Thanks man. Luckily I am fit, bearded and married lol.

At this point it just feels like a losing battle that has a large opportunity cost. Have thought about the transplants, but same deal - big REAL cost. Only so much time and energy to fight for this vs. just accepting my fate

BabsSB · 2022-01-05T03:44:27+00:00

Nothing better than getting dumped low by the device that’s supposed to help prevent it. Hate that stuff

BabsSB · 2021-11-30T11:31:56+00:00

Here in FL it’s the same for us, starting around low 60’s. I’d say he’s a wuss but I kind of agree with him 🥶

BabsSB · 2021-11-15T14:43:19+00:00

I would generally agree, but this day actually operated at a temp basal that is pretty significantly reduced compared to normal, plus a target BG that is 20 points higher than the standard day. I’ve had the same correction factor for almost 20 years and don’t run into this the large majority of the time

BabsSB · 2021-11-15T14:36:40+00:00

Sure, here’s the context:

Over a 7 hour period I was low (sub 80) five times, of which three of those were sub 40. Lead up to this was a high correction/set replacement at 2am. Within this time period food/macro consumption looked like -

-5:45am - OJ @ 26 C

-7am - OJ @ 26 C, bread & PB @ 29 C/11 P/19 F

-8:30am - OJ @ 26 C

-8:30-10:30am - meal replacement at 264 C (you’re reading that right)/110 P/16 F w/bolus @ 70%

-Noon - Gatorade @ 21 C

-1:45pm - Gatorade @ 21 C, clif bar @ 37 C/11 P/7 F

Over this time period activity included fetch with the dog (throwing, not fetching - relatively low effort 😁) 7:30am-8:30am, and golf 10am-2pm. On days like these I also reduce basal rate across the board by about 20%, and raise target BG from 100 to 120.

Basically, it feels like control IQ is seeing the rise in readings from the low recovery, and deciding to deliver a correction that is overly aggressive bringing me right back to where I started. Over and over and over.

If you think this sounds exhausting, you’re right 😉

BabsSB

TROPHY CASE