My 6 year old son was diagnosed with T1 in May. He is taking 3 Nova rapid and 1 lanctus injections daily. The NR is taken at around 7.30am, 12.30 and 5pm and the lantus is taken at 8pm. We are carb counting and giving him between 70 - 90 per meal (low GI mainly) with small 10 gram snacks around 11.30am and 7.30 when his BS will allow it. His dosage is currently quite low (2 units lanctus) and usually 3 , 2.5, and 2.5 NR respectively. We are checking his BS around 8 times a day and he is a fairly active / sporty little man. We use his arm for the two early NR injections and pretty sure we get the injection sub-cutaneously. For the evening shots he gets the NR in the thigh and the Lanctus in thigh. The temperature is around 18 degrees celsius at the moment
The problem is that he is fluctuating wildly with his BS levels. He's going through a rough time and I was wondering if anyone had been through this trend with their own child and maybe they could assist with some things to check / improve
Have you looked into getting a pump? It’s been an absolute miracle worker for us. Shots are so inaccurate, makes it impossible to manage your BG, always spiking and dropping… My daughter was Dx almost 5yrs ago, been pumping for 4yr.
Hi
Thanks for message. We are on a waiting list to meet with consultant to discuss this option. I think it will be the best solution but may take some time before we get the opportunity ( currently 9 months). So for the time being we will have to work on trying to manage via injections. This is not to bad because it will act as a back up should we have any difficulties with a pump and need to revert back onto jabs
It is very important to understand the calculations and why you give the amount of insulin you do, but the pump allows your child to eat when they’re hungry. No more scheduled injections, they can sleep in and eat pretty much what they want. We’ve only had to use injections once in the 4yrs of pumping because she got really sick and had to treat ketones. I can’t believe there’s a waiting list for pump therapy!! That’s frustrating! We were on a mix of NPH and Rapid. Never used Lantus… Hmmm. What’s your A1c?
We have not had a A1c measurement taken yet. We had a honeymoon period of about 4 weeks during the summer which I think would have an effect on the measurement. Since May he’s averaged 9.34 (168) from the BS readings.
I am sorry to here of your son’s diagnosis. We are all stuck on a roller coaster we didn’t sign up to ride! Our son was diagnosed in Feb of this year. We used injections to manage his T1 until June and then started a pump.
I remember feeling like we were the only people in the T1 world on injections. Are you feeding your son a set carb amount with a specific insulin dosage? Like he always eats 70 carbs for breakfast which equals 3 units of NR? Or do you count the amount of carbs he eats and then use an insulin/carb ratio to determine his NR? Also what methods of carb counting are you using? I know at six it can be very challenging to determine how much they are going to eat- do you give him his NR before or after he eats? We found that we had to weigh and measure in order to get accurate carb counts.
We also found that when on Lantus we had to divide his dose into two doses- one in the morning and one at night. The same amount just divided into half. He had less lows after we did this. Do you have a diabetes educator that you work with? I am in no way telling you to change things without consulting them- just trying to give you ideas to ask about.
When you look at the trend is there a pattern to when he goes high and low? I also know that there were certain foods that when our son was on injections were almost impossible to keep numbers in range. Foods like pizza, pasta, and ice cream. Higher fat foods slow down the absorption of carbs. Causing low blood sugars after eating and then highs hours later. We figured out how to split insulin injections, covering part of the food early and then another injection later to cover the rest of the carbs.
I am sorry your son is struggling. If you think I can help in any way feel free to email me privately.
Highs and Lows are just part of the “game.” You can do everything that you’re supposed to do and still gets lows and highs. Just watch for trends and try to be consistent with your treatment. Talk to your care team and take their advice but be ready to stand up for what works, even if the doctor’s say that it shouldn’t.
Thanks for the message. We work off a ratio of around 30 carbs to one unit for the NR. Fionn is fairly good with eating. We pre weigh the carbs and incorporate them into his meals. If he has something like pizza we sometimes leave the NR for about 10 minutes after he starts.
I’ll keep an eye on the pasta as you mentioned in case its one of the factors associated with the highs and lows. the problem is that we haven’t really changed much of his patterns over the last few months but for the last two weeks he has been swinging sometimes up to 12 mmols in the space of around 30 minutes with no real explanation from the usual suspects of carb intakes or rapid exercise
I will also get back to the diabetes team to suggest splitting the lanctus
Thanks for message. To be honest the care team are a little puzzled by his data as well. The trends are not yet surfacing with the factors we are taking into account. I’m fairly confident things will settle in time. I’m mostly interested to see if anyone had experienced the same situation and found additional factors that they felt had been the missing piece in this particular jigsaw
My daughter was dx when she was 6 and was on injections for about seven months before going on the pump. The pump makes it so much easier to manage, but there are still crazy fluctuations.
When we were on injections, we were doing two doses of lantus each day (7 pm and 7 am) and injections at each meal based on BG/correction ratio plus carbs eaten. It’s labor intensive, but the only way we were successful with injections. There are so many things going on in a childs body at that age – growth, hormones, stress – that we found regular check/injections was the only way to manage.
Thanks for message. . Fionn is also growing a lot (2 cm from May to july). Splitting the lanctus definitely seems like an option worth investigating with the Diabetic team. Did you use any alternative test sights away from the fingers for the morning test ? and how did they compare with the fingers if you did ? . If we are going to have to test often I would like to try and avoid using his fingers
My son is 6 and was dx 3 weeks after turning 4. We did shots for a year and 1/2 before getting the pump this past spring. We had rollercoaster numbers. After a low you can usually expect a rebound high. Will only took about 45 gms of carbs per meal and 15 gm snacks and a 30 gm bedtime snack. The pump has greatly increased our freedom. It has also decreased our lows. Will was getting low 30-50 every day and was not really aware of it. His a1c looks worse since being on the pump, but we don’t have all the lows to balance out the highs. Just do your best cause diabetes is a crap shoot.
Thanks for message. That’s really useful information for me as it helps me get perspective of Fionns intake compared to other children in a similar age bracket.
Thanks for message.I hope it goes well with the pump. I’m not sure of the carb scale your using. We set the carb intake pretty much on the recommended daily intake for Fionn. He is pretty tall for his age but also quite thin. The smoothies also work well for us and especially with black currents and rasberries.
Interesting about the smoothies- every time Tanner has a smoothie he goes dramatically low and then high later. If we add protein and fiber it helps a bit, but we have to be really careful. Our son is thirteen. He was diagnosed 8 months ago. I think when kids are honeymooning they’re little bodies still spit out insulin randomly and it makes it really tough to dose accurately. Every low creates a rebound high as well. We kept an actual log of foods and how Tanner’s body reacted to the foods. Foods like pizza would cause Tanner to go 6-8 hours later. Pasta isn’t quite that bad, but close. We ate the same meals for a few weeks until we could find a pattern. It did help us figure things out somewhat.
There are so many variables with T1. As others have said, growth spurts and hormones wreak havoc on numbers and we can only do so much. Sometimes I feel like just about the time we figure it out- something else changes. Stress (even good positive stress) can cause fluctuations also. Big swings in BG must make him feel awful and be scary as his parents. I hope things settle down and his numbers even out.
Last but not least, and it may be completely unrelated to your son but I feel it may be worth mentioning. Our son was having some big swings and odd lows after eating and then large highs hours later. Our endocrinologist always tests kids with T1 for celiac disease. Celiac is a gluten intolerance. Tanners was positive. People with gluten intolerance have delayed digestion. The food they eat while eating gluten is digested slowly and his insulin would peak and there weren’t enough carbs to cover it. We would treat and then hours later he would be stubbornly high. When we cut gluten out of his diet, his numbers evened out and things were much smoother. I hope that this isn’t the case with your son, but thought it worth mentioning.
I find the trend report somewhat confusing. I think it helps to keep a written log, indicating blood sugars at time of day, all meals and snacks and insulin given for each meal, also keeping track of exercise and carbs given for the exercise. Our log is a chart which starts with time 12am, 1am, 2am, all the way thru 11pm. Underneath that is a row for blood sugars, directly under the numbers, one row for insulin under that, another for exercise, and one row for the basals, as well as a row underneath for basal changes. At the bottom of the chart is a few lines each for breakfast, lunch, snack and dinner. We still log all meals/snacks insulin given for the meal, etc. After a while it becomes obvious which blood sugars are high because of certain food combinations, problem foods. The general rule of thumb given in the beginning was if high three hours after a meal, adjust bolus insulin, if high four hours after it could be basal related. I would get the book “Using Insulin” by John Walsh and particularly “Type 1 Diabetes” by Ragnar Hanas which deals particularly with diabetes in children. Also “Think Like a Pancreas” by Gary Scheiner, particularly for advice regarding exercise. And blood sugars in children can be just like a roller coaster sometimes; you find yourself responding and correcting for the high or low blood sugars. High blood sugars can be due to growth hormones which are temporary adjustments. So you will find yourself constantly adjusting the insulin, particularly during the evenings. Don’t worry, you will get the hang of it.
I hated Lantus when we were on it because we had a lot of lows with it. It became almost clockwork for the time. At 3:00 in the afternoon on PE days, my daughter would go low. I would give her her routine snack at this time in order to prevent a low. Thank goodness for the pump where we just have her adjust her basal insulin and she never goes low due to exercise.
I did find that when my daughter went high without explanation (and this still happens), that it is because she has sneaked into. her carb snacks or has gotten into a hidden stash of candy. It is a normal, but frustrating part of D. I’m not saying that this is what it is, but it is likely.
Also, depending on what time of the day it is, his carb/insulin ratio needs may be different. My daughter is on 11 carbs/unit of insulin for the morning time and 12 carbs/unit of insulin for the remainder of time. It doesn’t seem like much of a difference, but it does help tremendously.
Foods also will affect her differently at different times of the day. If she eats ice cream after 7 pm, she is high all night long and I am getting up every hour or so to check her numbers. If she eats it earlier than 7, she is usually fine throughout the night.
If you don’t already, I would recommend keeping a detailed food list and times of meals/snacks. This should help to point out these frustrating trends.
Food has a lot to do with the BG’s. Take out pizza causes my daughter to have higher BG’s than homemade. Any greasy fast food and we have to give her extra insulin. Sometimes, I think it’s seasonal, I have to give her extra insulin for cereals that are more sugary…Lucky Charms, Trix, Raisin Bran or oatmeal with raisins. The weather has a lot to do with insulin needs. Don’t stress. Just accept.
Thanks for message. We are trying to keep as close a watch on fionns food intake. Hes still a little young to be snacking on sweets (we think) but we will watch out for it. Just of interest can I ask did you do the lantus injections in the thigh. The reason I ask is that Fionn has lanctus in his leg and I am a little worried that when he does exercise (especially running) that he over cooks his lanctus absorption. This contributes to him going low after exercise and also possibly running out the following night. ?
My daughter always had the injection in the thigh. The doctor said that it was recommended in that area. I have heard of people doing it in the abdomen as well.
What I have learned is that Lantus and any other basal insulins are not very accurate. Meaning that the absorption rate differs depending on what kind of tissue it is being injected in. It should be injected into subcutaneous tissue, but on a small child it may accidentally go into the muscle. It may also be injected closer to a vein than other times (which would increase the absorption rate), etc.
Also, when a diabetic exercises, there is less need for the basal insulin. Does he have any sports that he is involved in on a regular basis? If he is, you may need to adjust the Lantus on those days or give it at different times. You could also give an extra snack on the nights that he has been more active. I would call your endo for any specific directions on that.
That is one reason why we went to the pump, it is much more reliable and it is easier to change the basal rate when she is more active. Hope this helps. And good luck!
