16 months old new T1D glucose level very unstable

My 16 months daughter was newly diagnosed T1D with DKA at the beginning of this month. After a week of hospital stay, she is back home now for the past few days. Doctors are still trying to find her best insulin dose. In the mean time her sugar is fluctuating a lot. At times of the day it goes 400+ and stays there for an hour or so. Also, she only stays kind of stable only 200+, when she is below 170 her blood sugar level goes down very quick. We are overwhelmed, moreover when we see even 4 times a day insulin can’t put her in stable range we feel worried. Hence, requesting parents with similar aged kids for their experience/suggestions, thanks a lot. It is great to know that we have such a support group here!

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Hi I’ve been a T1D for 35 years, mom of a T1D child who was diagnosed in elementary school 7 years ago. I feel your pain and I am very sympathetic. I’m assuming you are seeing a pediatric endocrinologist, it’s key to coordinate a treatment plan. Including a diabetic educator can be really helpful. Typically you come in contact through the doctor’s office or a hospital system. There are some instances when physicians are able to recommend continuous glucose meters and insulin pumps (depends on physician and patient). Of course feeling completely stressed out is normal, any diabetic diagnosis is overwhelming but when you add to it the young age it can feel excruciating. It will get better. Personally for me, if I didn’t feel as if I was in regular, helpful, ongoing contact with my child’s endocrinologist I may consider going to someone else. As I mentioned it’s vital for you to have an ongoing dialogue with the doctor. It takes tweaking and persistence and monitoring but you will get there. I wish I could give you more specific advice, either way I just wanted to let you know that you’re not alone

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Welcome to the forum, @Mahzabeen. I can’t give you any parental advice but I do second @mondaysgirl70 's recommendations. Many doctors manage Type2 but do not have an understanding of Type1; and even if this does you do want and need to match with someone willing to let you reach out as needed - specifically a pediatric one who can guide your child through the stages of growth.
I don’t know if there’s a minimum age for a CGM but it would be a great alternative to multiple sticks each day.
I highly recommend the book Think Like a Pancreas. Gary Scheiner, the author, has diabetes and is a Certified Diabetes Educator so he has a unique perspective, and I found the book to be educational (even after nearly 60 years with diabetes) and fun to read. It may help you formulate questions to discuss with your endo.

hello @Mahzabeen Welcome to Type Ona Nation. Can I offer an observation, this is from over 40 years of successfully treating Type 1 diabetes in myself: blood sugar is never stable. This is a disease that requires us to watch blood sugar an make “hourly” decisions (watching blood sugar and make a decision about insulin and carbs, 1 times per hour) sometimes “15-minute” decisions (same as above, but every 15 minutes) for the rest of our lives. It is a big burden, I agree, but in about a year, I promise you will be an expert and this will become a new routine for you.

there is no insulin dose that gives stable blood sugar, because blood sugar is heavily influenced by (a few examples) growth, activity, meals, stress, illness, insulin absorption, and many other environmental things.

If I take a walk (very mild exercise) within 4 hours of a meal, the insulin I have in my body will work up to 200% harder, than if I am sitting at a desk for 4 hours. Think about the level of activity of a 16 month old. I bet I couldn’t stand and sit and move the way your daughter does, The doctors cant be available every 15 minutes, so (even if they didn’t tell you) you will have to make all of the insulin and carb decisions. Do not panic, you can do it, and it will become more routine for you as you learn.

the formula for insulin and blood sugar? insulin makes your blood sugar go down, very slowly, and any shot you give will last for 4 hours. * edit - this is for "fast acting insulin - Long acting insulin is in your body and affecting blood sugar for 24-60 hours

any food with carbs in it will make your blood sugar go up. If I remember my son’s diet at 16 months old… Id say it was very carb heavy which is necessary to fuel his body’s requirements.

for very young children, if you are between 150 and 200mg/dl you are in good shape, and any time they eat there will be a spike. For kids if you can keep them from going low you are winning. Of course, the “goal posts” (game objectives) should be discussed with a doctor, but again, the plays and field calls are all on you. And @wadawabbit advice to buy and read “Think Like a Pancreas” is required reading.

As a professional engineer I can also say “the only way to control a variable is to measure it”. as soon as possible I recommend a CGM (continuous glucose monitor). Please familiarize yourself with all of the technology we have available for measuring blood sugar.

One final thought is one of perspective. While this is a huge burden and stressor… not too long ago the diagnosis of type 1 diabetes was terminal. The life span after diagnosis was some number of weeks and there was no chance of survival. I’ve been successfully treating type 1 for 4 decades, and some of our participants for 60 and 70 Years. My type 1 niece just had a baby, and I too have a family and am a dad, I went to college and did many stupid things as well as many grand accomplishments - in other words, your daughter will not only survive, she will learn to deal with this, from you, and has the same chances as anyone else for a full life. Please keep posting and please let us know how you are doing!

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@Mahzabeen Since you’re new I just wanted to add a very important point to what @joe shared: when you see high numbers you may be tempted to give additional insulin to bring it down. Always check with your doctor and follow their instructions: our numbers never start coming down as soon as we would like, but at the same time insulin takes time to work and taking additional insulin when you have recently given some (called stacking) will not help the process along but may result in a dangerous drop later. That waiting is frustrating but necessary. In time you will become accustomed to adjusting insulin doses but for now don’t add any additional insulin without your doctor’s instruction - and by all means contact them as you feel the need.

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Welcome @Mahzabeen to this community, The JDRF TypeOneNation forum! None of my children or grandchildren have T1D, do I can not answer your question directly so my offering is based only on my seven decades living with diabetes. You have already read some very informative information posted by others, so my bit will be only summary.

  • My first thought is that what you are observing in your daughter is nothing that is out-of-the-ordinary; at her age, where her communication skills are still forming, her doctors may be thinking that “higher BG” is safer than safer rather than giving her too much insulin and driving her to a dangerous low. Just my guess, and that a gradual insulin increase will be directed when it is seen what happens - she may on occasion still produce natural insulin.
  • Also, try not to compare your “daughter’s numbers” with other PwD [Person(s) with Diabetes] because each of us is uniquely different and “good numbers” span a wide range for all of us. Eventually, you will want to see her BG fluctuation get tighter and be “in range” most of the time rather than just her average BG, the HbA1c number, hit a certain point.
  • Effective diabetes management involves finding the perfect balance between food eaten and activity [baby sleeping is activity], and just the right amount of insulin to balance those two. Keeping this in mind, especially while growing, her injected/infused insulin amounts required will probably be changing very often. Eventually, and by you observing her eating and activity, you will learn the magic of insulin.

This isn’t easy for a parent to watch, but with patience and loving care, your daughter will be living a long, active, and fill life. Diabetes will not hold her back!

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Wow. I’m so sorry you and your baby are struggling. This must be so incredibly overwhelming and scary! I was reading some of the replies here and wanted to acknowledge your child is too young for some of the better technology available for treating T1D. If my information is correct, insulin pumps and continuous glucose monitoring (CGM) is not available until a person is two years old. My best advice would be to find (if you haven’t already) and work very closely with a pediatric endocrinologist. It can be incredibly challenging to find a good endocrinologist depending on where you live. If you have access to someone, I would start the conversation about transitioning to pump therapy and a CGM as soon as your child is old enough. I pray you have access to a knowledgeable, compassionate medical team for your child and I’ll be keeping you both in my thoughts!

I was diagnosed T1D just shy of 18 months. I am now 60 years old and am healthy. So, my best advice is to hang in there! Your child’s endocrine doctor will be a big help in getting her blood sugars under control. It will take some time, and as Joe pointed out, blood sugars are almost never perfect. So, give it time for the doctor to figure out how much insulin she needs. Also keep in mind that she may be in what is known as the Honeymoon phase, in which her insulin needs may be changing.
My best advice is, don’t stress. Just be patient. It will get better!

Pam K.
T1D 57.11 years and counting!