Hi,
My daughter was diagnosed with t1 on 30th july 2019 with all the t1 symptoms showing clear on the day. Her bgl was 505 with random glucose test. The doc started with novorapid 10units before each each meal. Her bgl was not coming control on 3rd morning and was at 341 when we went into emergency they admitted her and started with lantus at 6units at night and novorapid 3units before each meal. Thing is sometimes her bg is under control and at other times it goes above 240 and also 320+. Sometimes it goes as low as 47 and I give her a spoon of honey and it increases to 300+ when she sleeps I’m afraid of low bgl as it did happen twice that her bgl was 54, but she does not show signs of low bgl when sleeping and I’m afraid what might happen if I sleep and don’t check her bgl. I need help in how to manage her bgl at all times. Shes just 6 and keeps asking for food to eat like any kid and it breaks my heart I need to tell her everytime she cant have wt she wants at that time that is like chocolate or cake or biscuits etc. How do I manage plz help
First, welcome to TUD @mariam. This is a great place full of people experienced in the disease, parenting kids with it, and helping people who are totally new to it and a bit panicked and overwhelmed. Which is pretty much what everyone experiences right at the start!
Second, this is very early days and it will get better—promise!—but there is a lot to learn. Ultimately you’ll probably want to get her on a pump and a CGM (Continuous Glucose Monitor), which will make things a LOT easier. Learning how much insulin to take for how many carbs is also an important part of it. That differs for everyone, kids and adults alike, and it takes a bit of time to figure out, so right at the start your dr’s are probably just working from general principles before helping you work out a more precise treatment plan. When that happens, though, it will become easier to manage things like cake & biscuits, so don’t feel too dismayed at having to curb that stuff right now—it’s not going to be a permanent situation.
Another thing to be aware of at this stage is something called the “honeymoon” period. This just means that the body may continue to produce some insulin for a while after the disease process starts, and that may explain why sometimes your dosing works, and the next day it doesn’t. Again, it’s a pain, but it’s not unusual and keeping her diet steady and predictable for now (hard as that is with a six year-old!) can help.
I’m sure others will be coming along soon to help with your specific questions. But meanwhile you might have a look at this recent thread from a mom in similar circumstances to yours:
There are a lot of questions and answers there and you’ll probably find some useful tips, as well as perspectives to help you keep your own anxiety about your kid from being too overwhelming. It is doable, and you and your daughter will be ok. And we’re here to help too!
ETA: just want to make sure you’re aware of our Diabetes Terms and Acronyms threads, pinned at the top of the Forum list. They can help you sort through the thickets of specialized vocab pertaining to T1, which can also be a bit overwhelming.
Look into getting freestyle libre cgms, so you can monitor bg with just a scan.
Her daughter is 6, she’s better off getting a CGM with alerts and definitely a share/follow function.
It sounds like your doing good control for a brand new diabetic. You are just getting started. It will take time. I have been diabetic for 27 years and I still get low and sometimes go above 300. That doesn’t mean that you are doing a bad job. You are doing your best. Thats all any of us can do.
You will acquire new skills over time as your experience and comfort level increase. She is very young and its going to be a lot of work. I think you need to check in the middle of the night until things are more sorted out. Set an alarm and check just like you are doing now.
Diabetics can eat cake and biscuits. You are going to reach a skill level where that isn’t so much of a problem. Its just because you are starting out that they want things to be as simple as possible. For now, maybe keep a little cake or biscuits on hand (a small serving) for her when she hits 47. Cake and biscuits taste particularly good when you have low BG, I think.
Get a Dexcom as soon as you can! Only a few finger sticks needed! You can get a reader that will tell you her BG’s at a glance and give an alarm if she is dropping to low. The best way is to get a cheap smartphone for her to carry and it can share its data with yours so you will always be able to tell what her BG’s are even if she’s somewhere else.
A pump is also useful, no shots all the time.
I agree, but takes time and usually longer learning curve. Freestlye Libre could be short term, but available quickly, an improvement over fingersticks, short term. Libre 2 will have alerts when available.
This poster may be in Europe, where it may be easier to get, lower cost.
Mariam, first I want to say how much I completely understand what you are going through! My son was only just diagnosed on June 03rd and boy has our world been flipped upside down! Those lows are super scary and I don’t think I have slept a good nights sleep in two months! The reading you are getting seem troublesome to me especially being she can not communicate with you about your lows and that she is sleeping! One of the best things we have done for my son was to get the Dexcom G6 CGM- this reads his blood sugar continuously every 5 mins and can stay on for 7-10 days at one site.
She is most definitely still honeymooning which is why I am sure you are seeing her randomly run low at different times! So is my son! This will be something we have to look out for until their pancreas no longer produces insulin! I can also relate to how heartbreaking this disease can be, especially when you have a child who doesn’t understand their diagnosis and who wants to eat like they always have! This is new and it will take time! Something I have to remind myself of quite often! We will likely be adjusting and tweaking their insulin doses many, many times over the years as SO MANY FACTORS affects blood sugar! Please reach out to me if you need an ear or have any questions! I am happy to help if I can or just listen!
GET HER A Dexcom CGM! If insurance doesn’t cover it, buy it anyway if there is any way that you can afford it. It can save her life.
Most definitely a dexcom with the ability to follow. Essential for any kind of peace of mind.
Some tips that might help now. Generally if she drops to low it’s because it’s too much insulin. It could be the basal dose (lantus) is too high or it could be the last basal dose was too high if it was within 4-6 hours before. This will be changing anyway over time.
It is going to hard to get the right dose because of the honeymoon period. But if she is dropping too low in the middle of the night and she hasn’t eaten for a long time it’s probably the basal dose being too high right now. It just is safer right now to be on the higher side than too low, as long as there are no ketones present. You don’t want DKA.
One of the best things to learn is to carb count and dose accordingly. It could be adding to the too high and then too low scenario. If you are always giving 3 units, it might not be enough for spaghetti but then be too much for chicken and veggies.
See if you can get into a nutritionist or class about carb counting.
Its way early in her treatment, but I strongly suggest buying books such as Pumping Insulin, getting some info (videos or one-on-one) from an endo about transitioning her to a pump. Regardless of if she pumps you must know a couple of things to give her the correct amount of insulin:
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Her basal insulin needs. ramp up to the best value by being conservative with her insulin until it seems correct and then DON’T KEEP TWEAKING IT CONSTANTLY. Steady as she goes, once she gets decently regulated.
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her drop ratio–the number of mg/dl that she drops from 1 unit. To test for that, she must have been fasting and stable for a least 4 hours. That means skipping one meal in order to do the test. Do the testing 2-3 times on different days and average out the result. Do not be fooled by how much she drops in an hour or two. The correct time to test for the maximum drop can be as much as 4 hours later. So you can see, she has to be stable, and a bit high, before starting the test!
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her carb-to-insulin ratio. it may vary throughout the day. that’s how much insulin she needs to cover carbs.
The basal adjustments MUST be done prior to testing for sensitivity to insulin (drop ratio) and carb/insulin ratios.
You are getting some great advice here, I wanted to ask if your daughters Endo has given you any educational classes on her disease and insulin dosing? We were required to take 3 separate classes immediately following my son’s diagnosis, each being 6-8 hrs long. We gave a huge binder full of his diabetes related information also! Does she have an Endo? If not I highly recommend her seeing one to help with management of T1D. I know all of this seems so OVERWHELMING right now, but in time it will get better! These nice people here are willing to help with just about anything that they can, so don’t be afraid to ask questions!
My point was, your given a set amount of insulin for meals which is way different than what we do. We have a carb ratio to follow with what he eats. For example, he needs 1 unit of rapid acting insulin for 10g of carbs. Like Marie20 has suggested, depending on what she is eating, 3 units can either be too much or not enough!
We have an appointment with the endocrinologist by next week hopefully we can then be clear on the doses. We are currently following wt the diabetic nurse has asked us to follow
Also I get myself panicked when I see low numbers I have given her 1tbsp of honey on two occasions and it shot up the bgl any other suggestion other than honey and sugar wt is the rate of bgl I’m supposed to feed her honey or sugar etc.
Well, that is understandable, lows ARE scary and even more scary when it’s your small child. A rule of thumb our Endo has given us is, if the BG is under 110 but not under 70, let her have a 15g carb snack bf bed without dosing with insulin. The only time we are instructed to give fast acting carbs, which I am sure is what the honey is, is if he is under 70 BG. The numbers you have mentioned in your original post are LOW and you were right to treat promptly.
Also to add, once she sees an Endo hopefully they can help you get a better grip on her insulin needs.
Wt I learned from the posts was when early in t1d it’s better to be high than to be low. Fingers crossed I hope I can get her doses right eventually and not have mini heartattacks
Yes!!! This has ABSOLUTELY been our approach, my sons target BG is 150 just until he is no longer in the honeymoon phase! Also, I will not let him go below 90 when he is sleeping especially! It was so much more nerve wracking when he did not have the CGM and I only had finger sticks to rely on! Now, I can watch and listen for the alarms! It’s not good to run high for the long term but doing so for a short while will potentially prevent a life threatening Hypo situation. So, I would talk to the new Endo about anything and everything that you are concerned about!
Is she going to school this year?