Our daughter Olivia was diagnosed with T1D on March 20th, 2016 at 15 months old. Since that time, like most parents on this blog, it has been a roller-coaster ride of learning everything we can on what it takes to be a successful parent of a child with Type 1. In the 7 weeks since her diagnosis, her insulin doses have slowly increased, we put her on the Dexcom G5 CGM, and we have become carb counting expert dietitians in training.
To say Livi’s blood glucose numbers are erratic is an understatement. Currently, the dosing regimen the doctors have us on can’t seem to get her below 250ml/dl consistently, and Livi’s is highly sensitive to carbohydrates; with even the smallest amounts 10-15 grams shooting her over 400. The doctors are slowly increasing her doses but seeing her over 250 on the CGM all the time it driving me crazy. I am starting to get very impatient. Do I need to relax and let them do their jobs? Or am i right to be concerned she is over 250mg/dl 12 out of 24hrs of the day. Her Keytones are always negative so far.
We are tying everything, unsweetened almond milk to high fiber sugar free yogurt to fruits and veggies galore. We essentially limit her from any high Glycemic Index foods.
Separately, she is showing more and more aggression. I’m wondering if the high BG are affecting her behavior or all of the shots she has to get everyday she is learning causing pain is showing affection?
Anyone else experience any circumstances similar to these?
I think that, with children in particular (and probably even more so with very young children), it can take a while to work out insulin doses. I was diagnosed at age 9 and still have the records that my parents kept, which show that my blood sugar ran high for weeks before it finally came under control. My insulin doses also started low and were gradually increased (although, since it was 25 years ago, the insulin regimen was quite different from those used today). I think that doctors start low and work up in order to avoid severe lows, especially in a child who can’t identify that they are feeling low.
Is your daughter using a basal/bolus (multiple daily injections) insulin regimen? Have her doctors said anything about an insulin pump? I would guess that her insulin doses are very small, and this may be part of the difficulty, if you are unable to correct her blood sugar until it’s very high because one unit will drop her 150 points or similar. A pump allows basal rates as low as 0.025 u/hr and bolus amounts as low as 0.05 units to cover food or correct highs.
Good luck with the steep learning curve. It sounds like you are doing a great job and you have definitely found a good resource in TuDiabetes.
I suggest that you check-out Scott Benner’s blog called “Arden’s Day.” Arden is now eleven, but she was diagnosed at age 2 and I’m sure the archives of the blog will be good to read. Scott is a stay-at-home dad and was one of the first parent bloggers.
Also on his blog is info about his podcast called The Juicebox Podcast. It is definitely worth listening to.
Also Scott is a very approachable guy and you might want to contact him with questions once you have investigated his blog. If nothing else, you will learn that you are not alone.
I’m not any help other than to say that you’ve come to the right place. There are tons of knowledgable and caring people on this forum so you are not alone. Typically you have to wait 6 months post diagnosis to get a pump. I"m not sure if it’s shorter or longer in children. You are in a tough spot especially since your daughter is so young. I have a friend who’s son is older now but he was diagnosed around the same age as Livi if you want a contact. It may or may not be helpful since her son is now 23. The technology and dosing have changed a lot over the years (which is great!) but I’m sure she’d talk to you if you need anything.
I’m sure you’ll get a lot of comments on this post! Keep asking questions. You are your daughter’s advocate and certainly her endocrinologist will understand and welcome your questions. Good luck!!
You may want to look up the Type1Grit group. They are a group of kids managing diabetes with low carb approach. They have fabulous recipes as well and nearly everything high carb can be made low carb equivalent. The people there should be able to help and guide you as well. It seems that little kids are even more challenging for blood sugar control than many adults. There will be a very steep learning curve, which you are well on the way up. It will surely take time to get things sorted and stable. Her high sugars are probably affecting how she feels and her emotions. Keep at it. You are surely doing a good job.
Are you adjusting insulin on your own, or are you stuck to doctors orders? from what i read
the doctors are doing it. I would strongly suggest to learn how to adjust insulin dosages on your own (with your doctors guidance if possible). if you can do it on your own you get so much more independent and can act much more faster, after all you see her 24/7 and take care of her, the doctors are somewhat away from the game.
A good book to read regarding that is
“Think like a Pancreas” by Gary Scheiner
I also second the pump suggestion, it would lessen the daily shots to one every 2-3 days (set change) and give you much more room to work, especially with lower doses. You can act faster and preciser.
I hope that helped somewhat, take your time, you are in this for the long run!
Props to you and everyone out there taking care of a CWD (Child with diabetes), you do the hard work!!
My son was diagnosed at 2 years old. What I have noticed is that most recommendations from the hospital don’t apply to us. They sent us home with a basic formula–but we soon found out that it was just a starting point. The fact is–everyone is different and there are too many variables in a given day to confidently use a single formula. For example, we were told to give 15 carbs and test again in 15 min. if he was low. If we actually did this, he would be well into the 400’s. Even now, we have to take quizzes for each checkup–and the 15 in 15 rule is still there. Using the Dexcom, you will learn how everyday situations apply. I can attest to the fact that prolonged high BG can make your child feel terrible (which may cause irritability). Have you thought about using the Omnipod pump? I noticed a large improvement from the MDI’s due to the fact that we could fine-tune his basal numbers.
One thing to remember is that–unlike an adult–Livi is growing rapidly and the formulas used for calculations will change constantly. It feels like we are always tweaking the formulas. What worked the last few weeks perfectly–suddenly no longer works. It can be quite frustrating, but as soon as you can acknowledge and accept it–your job will become somewhat easier.
Bradford1: While I can understand the sentiment behind the asinine “quizzes” you are required to take at clinic visits for your son, I’m finding the whole premise wrong on several levels. First of all, you know your son’s T1D intimately better than any physician will ever understand. Second, while there are many good “rules of thumb” that can be helpful in trying to manage T1D, your son’s clinic needs to learn that D seldom plays by the rules. And such a quiz is undoubtedly frustrating and downright insulting for parents who know better, and likely serves to alienate these parents. The clinic should be quizzing parents of CWD who were recently diagnosed only, along with seriously re-thinking their questions, or just scrapping the quiz period. If I were you, I’d be so tempted to write in next to my “correct” answer for the “15 wait 15” question something like “Yes, definitely this choice. Because I enjoy chasing a high in the 400s for the next 6+ hours and I am not at all concerned about the damage such an extreme excursion may cause.” I am so sorry you have to play this game at ongoing follow up visits, Bradford.
@rgcainmd. Yes. It would be very easy to get cynical about it. We always roll our eyes as we complete the nonsensical quiz. On the flip side–I can understand that the hospital can’t know the intricacies of each patient and have to come up with some kind of generic rule for parents of T1. We have seen that there are parents that (how can I put it lightly) don’t aggressively manage their children’s condition. A sticky situation. We have also had our differences with the clinic about the timing of our bolus. The fact is that we are nearly always chasing a high due to the fact that his eating isn’t always predictable. Many young children are finicky eaters, which poses an additional challenge. He is 4 now, so is actually getting better–but I can definitely sympathize with a 16 month old.
I’m not a parent of a T1 but have been T1 for 32 years. First, keep in mind that she was just diagnosed a month ago, and the “honeymoon period” (not sure why they call it that, it’s no honeymoon) lasts for up to a year or more after diagnosis, where she may have some functioning beta cells that periodically decide to work here and there, which adds to the erratic BG’s.
I don’t want to advise on diet since she is an infant, but keep in mind that glycemic index is less critical than just overall carb intake. Carbs are essentially carbs, whether they are sugar, fruit, starches, grains, rice, noodles, whatever. So veggies galore is great because there is only minimal impact on her BG, fruits not so much. Berries are the lowest-carb fruit and are a better choice than bananas, apples, etc. which are quite sugary.
As for pain from shots, to be honest she probably doesn’t even feel them most of the time. The needles are so small and thin anymore, that only if you happen to hit a little muscle would she even feel even the mildest of discomfort. Try it on yourself sometime and you’ll see. She might not like being restrained for her shots, but I would think a little cuddling and kissing afterwards would ease that. Once a year or two has passed, you can look at getting her onto a pump, which is painless other than one good stick about every 3 days. They are wonderful, and it’s amazing how kids learn to work with them because they are sponges for that kind of thing once they’re a little older.
I would say that Doctors know what they are doing and to trust them when it comes to dosing. It sounds like her Long acting insuling dose is too low. Lantus is what keep your BG’s steady through out the day.
I would tell you that doctors don’t know much about Nutrition and how to manage your daughters diabetes with insulin and diet. I would suggest keeping her on a low inflammation diet, heavy on the fruits and veggies. I would remove all dairy and grains and keep her on good proteins, veggies and fruits and high in good fats like nuts, avocados and olive and avocado oils. This all has helped me tremendously cut back on 50% of my bolus doses and keeps my BG’s in good order.
Also good call on the Dexcom, it is a lifesaver.
First off thank you all for your responses! There is some really good advice and sites/groups to visit. Your responses have helped me relax…a little. Jen - yes Olivia is on basal/bolus MDI and we have spoken about the pump; however, we were told we needed to wait until at least until our 3 month mark. Laddie I will certainly visit ardensday.com!
Swiss, I was lucky enough to meet Gary Scheiner at the local JDRF conference here a few weeks ago. He was awesome, that was before we had the CGM, and before I really new anything about Type 1 (not that I know that much now). We are still stuck on doctors orders. Currently dividing carbs consumed by a set ratio for breakfast, lunch and dinner.
The doctors have increased her basal dose and bolus ratio this week and I have seen an immediate improvement in her BG. She is still high quite a bit but spending a lot more time under 200 at least. I know we are in for a long ride, but having a site like this to talk to others is an awesome feeling to know we are not alone. Thanks!
You got some great suggestions and support here. You have a tough job with your daughter but who better to do it than a motivated loving parent focused like a laser trying make your daughter’s life better. You are so smart getting a CGM in place. There’s no better way to learn about your daughter’s metabolism.
It’s taken me a long time to learn and accept the fact that good diabetes management recognizes the changing nature of the disease itself. Old style formulas may be an acceptable starting point but thinking that’s all that’s required is not helpful. Diabetes is a moving target. Go with the flow. Ponder’s surfing metaphor is perfect.
Just take it one step at a time. You will learn soon enough. Your doctors are probably keeping doing the adjustments to give the responsibility slowly, there is already enough without having to figure out basal rates. Eventually, you will feel comfortable doing this, but there is so much to learn with a diabetes diagnosis, take it your pace!!
good luck
as others have said, watch the carbs starches and sugars, you can alway add more later
breast milk is high fat, then when weaned, most are told to go low fat. .I think fats are good and with protein can replace the lost starch energy
The thing I would like to see if you haven’t been given them yet, is the sick day rules. It’s better to get your head around it beforehand that at 3am with a vomiting child and high BG
The “long ride” part of this is critical. The weirdest part of this disease, and the hardest to get your head around at the beginning, is that the biggest danger to your health in the immediate term is not the disease but the medication. I imagine it’s a hundred times worse as a parent, especially if the patient is still an infant or toddler, but even those of us dx’d as adults (I was 28) have this problem. The numbers are the evidence of your disease, and you want to Make. Those. Numbers. Go. Down. NOW. But while it’s absolutely critical to get those numbers in range over the long term, any individual post-prandial spike is not an immediately life-threatening situation, whereas a severe hypo is. I remember during my first week or so after dx (30-odd years ago) calling my Dr’s after-hours emergency number in a panic because I’d had some french fries with dinner and my BG had shot up to the high 300s (using the crude test strips we had back then). “Well that’s what diabetics do,” he explained, and said that if I was worried about it I could take a cautious couple of units of R and keep an eye on it for a while. I think that was before I’d had my first experience with what a real exogenous insulin-induced hypo feels like, which also helped to put things in perspective.
This is not at all to say you shouldn’t be focused on getting those numbers in control, obviously, but there’s a reason why the medico’s take a more incremental approach to getting the medication dialed in. I went through this myself all over again a few years ago when I switched to a pump–I hated the numbers I was seeing in those first months and I really wanted to crank the basals up to make 'em go away, but the way a pump works that can be even more dangerous than with injections. It’s hard not to say “I want this fixed NOW” but it does sound like you’re getting her more in range, and as important, it sounds like you’re getting your perspective adjusted, which is really what’s critical to the “long ride.”
Indeed,frustration. No, NOT a Parent with CWD–TI myself for >50 years now. The highs can cause damage (as I’m sure you are aware) over the long run. For me: it’s EASIER to count the carbs in sugar/products. Because the artificial sweeteners affect glucose levels as well. (Splenda is 600-800% sweeter than sugars. Yep.) Pump may help…very good for micro dosing! Can be bulky–depends on which pump. Pump also keeps track of ACTIVE INSULIN that is remaining in the system. Whereas, MDIs do not.
Gotta’ be very tough having One so little being dx’d so young…
