Adult Daughter with intellectual disability

My daughter was diagnosed with T1D when she was 22. She’s now 33. Because she has an intellectual disability, she isn’t able to count carbs to determine how much insulin to take. She’s often out with an aide and it’s my responsibility to determine how much my daughter should bolus with a meal. She calls me, tells me her BG, and tells me what she’ll be eating. It’s challenging calculating insulin dosage for someone else!
I long to connect with other parents in a similar situation. At times, I feel burnt out. I also wish I had a friend with T1D who could answer some of my more mundane questions.
This forum has been extremely helpful if for no other reason than my ability to have a glimpse of what others with Type 1 experience.


Hi Daniela @dsiizuka , I don’t envy your situation at all; but first let me Welcome you to JDRF TypeOneNation Forum! I hope that here you will be able to ask any question you want about diabetes and eventually become more comfortable.
Every question you have is important and nothing about T1D is mundane; here you will find many people here willing and wanting to share their “tricks of the trade” gleaned while living with diabetes. I could share with you an arithmetic formula I use for carb counting but I’m aware of many phone apps that can make this process much simpler.
I don’t walk about with a ‘smart=phone’ so I’ll yield to others her to make specific suggestions for good apps. Keep asking questions, and also use the search feature on this page to get more information on topics.

@dsiizuka. Hi Dani You now have several friends with T1 that you can ask. So just ask. We won’t let you down.

Hi Daniela, I’ve been a type 1 my whole life, and i know it’s challenging. but have you looked into getting the pump for your daughter, there is one that monitors the glucose and is set to release the right amount of insulin without having to inject herself. I don’t know what kind of insulin pump it is but if you do some research you should be able to get more insight on it.

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Hi Daniela! I’m Abby, I’m 17 years old and I’ve had T1D since I was 7.
Unfortunately I don’t have much parenting experience, but I’m more than happy to lend an ear or answer any questions that you might have about life with T1D. Feel free to pm me if you want to chat, or post on this website anytime–it’s a great place to connect with parents and with PWD.

My daughter has the Dexcom G5 and uses the Tandem X2 T slim pump. Because my husband is over 65 and is on Medicare, our daughter, Kimi, also qualifies for Medicare. Medicare is supposed to approve the G6 this Autumn and that should help somewhat. In any case, we couldn’t be more grateful that Kimi has these wonderful devices.
Still, it’s a challenge to be “on call” 24/7 in terms of her BGs, food choices, bolusing, etc.
I so appreciate having a forum like this where people can express their concerns, offer tips, give practical advice, and just plain vent… a place where others understand.

Do you pre-bolus before a meal most of the time? We only began doing this recently since our daughter had a tendency to suddenly decide she wasn’t hungry when she sat down to eat. Lately, she has been better about that so pre-bolusing has been a much better way to keep her number under control. Still, 2 days ago, K pre-bolused and then “went on strike” when she sat down to eat. That became a huge challenge… Does that ever happen to anyone on this forum? What do you do then?
More questions: If you go high during the night (e.g. over 250), do you always check for ketones?
And do most T1Ds have a blood ketone meter in addition to the urine strips?
We got one about a year ago and it has saved us 2 trips to the ER.

Dani @dsiizuka, I certainly do not envy your position and thankfully my many years of managing my diabetes, including when a “blood sugar” hospital lab test took days to complete. I’m not a medical doctor, but I will try to suggest what you might want to try, and I can’t answer for "most T1D’s.

  • Unless K is susceptible to acidosis poisoning, I would never test either blood or urine for ketones when her BG was up to 250 mg/dl. Hyperglycemia [high BG] and acidosis are two separate conditions and a person could have VERY high BG and not have acidosis; 250 mg/dl although above the 70 to 180 mg/dl “in range” is not in my opinion high, let alone very high. Unless something else is going on, don’t bother checking for ketones at that level.
  • Pre-bolus: Unless her BG is significantly higher than the target for before a meal I would not recommend, under the uncertainty of whether K will actually eat her entire meal, a pre-bolus. If her BG is significantly above her target, you could split the dose and give the “correction dose” before the meal and if she is eating well make a guess based on her eating when to add the insulin to cover her food intake.

I rarely pre-bolus, only when my BGL is more than 50 mg/dl above target.

I’ve been Type 1 for eons, but I have not heard of “pre-boluses”. What is that exactly?

Hi Dennis- Thanks so much for your input. It’s helpful to understand more from someone who has had T1D for a long time.
You say you rarely pre-bolus. Are your numbers fairly good 2 hours after you’ve eaten? Do you eat very low carb ?
Before we started pre-bolusing, K’s BG was almost always over 200 two hours after a meal. After we began the pre-bolus “method”, K’s BG was much more within the target range. Her A1c also came down. I also recently met someone who works at a T1D camp and she told me that they always have the kids pre-bolus 15 minutes before their meals. This made me begin to think that maybe “everyone” with T1D pre-bolused!! Clearly, that was a false conclusion since you say you rarely do it.
If you don’t mind, please tell me more about how you manage your diabetes/bolusing.

The diabetes educator referred to “pre-bolusing” as giving the bolus 15 to 20 minutes before a meal (instead of immediately before taking your first bite). That timing seems to potentially help the insulin jive better with when the blood sugar peaks. If the meal is pizza or something high fat/ high protein, then I believe it’s better to split the bolus.
I’m still studying all this and trying very hard to keep my daughter’s BG better within range.

Dani @dsiizuka, many people pre-bolus and find that it is absolutely necessary for good management and preventing after-meal spikes.
I only pre-bolus when I know beforehand exactly what I’m about to eat and even at those times - usually breakfast and at lunch when eaten at home - it is only by a very few minutes and never if my BGL is at target and my CGM arrow is indicating that I may be falling.
My daily carb intake is more than 200 grams - not “very low”. In the last few years I’ve become very sensitive to insulin and I’ve found that the Humalog I use begins dropping my BGL - according to my CGM - almost immediately after I start a bolus.

That’s very interesting, Dennis. It’s fascinating to me that you’ve become more insulin sensitive as you’ve gotten older. According to the endo, our daughter is insulin very sensitive. Now I wonder if that might change in some way over time…?
And just when I thought pre-bolusing was the “key” to keeping K’s numbers better in range, she began going very low right after she began eating so I had to stop the pre-bolusing most of the time. As you said, if her number is on the higher side (and trending up), then I still have her do it. But otherwise, she boluses when the food is in front of her like we always used to do.
Sigh I wish there was a pill like some people with Type 2 can take. Or, better yet, a cure for Type 1 !!

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