Hi there, my daughter was diagnosed a little over one week ago with T1D. She was having symptoms for a few weeks, and I took her to the doctor more than one time before pushing for them to run tests, which discovered her diabetes. I know that we are still trying to get her insulin dosages correct so her numbers have been running high. Her Lantus has been increased twice and her meal insulin hasn’t yet, but we are thinking that it may be since she’s running high. My anxiety is awful…it’s 24/7. I am worried that her numbers are high, I’m worried they will get too low, I’m worried that I am doing something wrong…I’m worried that I should ONLY give her “free” snacks…
My question is, did it take awhile for the endo to correctly dose your child? Should I really not worry so much about the high numbers on the insulin (200-400 normally) and let the doctors figure it out? I’m SO nervous to trust being that I was blown off by our pediatrician when I suspected diabetes.
yes it takes a long time to figure out insulin, and with your little girls growing, there are factors that can increase her insulin needs as well as decrease them.
insulin isn’t like you take a pill every day and things are “level”. Insulin needs change hourly. and are mostly dependent on intake (carbs in) and exercise. I have had diabetes for almost 40 years and I have highs and lows every day.
This is one of the diseases where you have to be the primary physician. In my experience, the decisions are hourly and you can’t depend on a doctor to be able to call you back in 15 minutes on a Sunday.
It will take you about a year to be an insulin expert, and since your daughter is growing… to be able to tell when to increase or decrease insulin. Once you learn how to use insulin, there isn’t anything your daughter can’t eat. This includes cake and treats. It’ll be a long learning process, but you can do it.
If you have access to a CDE (Certified diabetes educator) I urge you to use one. They can be much more supportive and available during the first year than a doctor can. If you like to read please consider getting the book “Think Like a Pancreas”
lows are more dangerous than highs,… but they are also pretty easy to fix. The sugar in cake icing in a tube can be absorbed even if she doesn’t swallow it. even so there are glucagon kits that can be helpful in case of emergencies.
they generally want you to be about 180 when you have a little one, so it sounds about right. Normal blood sugar is 69-99 mg/dl but it is too dangerous of a target for your daughter right now, and honestly it’s too tiny a target for people with t1d.
Hi Amanda @amandapaga,
I totally endorse what @joe has told you and emphasise that a person with diabetes must truly be her/his primary care physician but in your daughter’s case you will need to fill that role at the beginning. Yes, you should be really observant but not overbearing - yes, let her be a kid - -----.
Personally I’d much rather see her glucose readings a little bit “high” than to see her [and you especially] trying to arouse her from a hypoglycemic [low blood sugar] event. Right now, with 60+ years living with diabetes I aim to keep my BG readings at 100 mg/dl or higher.
My best wishes for your daughter, and for you - there isn’t anything in life that your daughter can not achieve “just because” she has diabetes.
I was diagnosed at 2 and a half so I empathize with you from my parents’ experience. I have had hospitalization for both highs and lows when not controlled, but for the most time within 200-400 one will generally be OK…obviously that’s not the goal but especially 200 is totally acceptable in my personal experience and opinion (including anxiety). I agree with everything above, and I would just add to keep checking as often as needed or possible. In my experience the times that were most dangerous were only when I was going down so fast that it was not controllable when I/we realized it was low. I know it’s really challenging but checking more often especially after short acting insulin will hopefully better prevent lows that are harder to treat. Being diagnosed at 2 I felt like I was always used to it and it was just always a part of my life, rather than being diagnosed later on and having to learn all about it and manage this new challenge once I was already a grow(ish) person. It’s definitely challenging but in some way I accepted it more because I had to as I grew up. In terms of everyday stuff, we always always carried juice boxes. Juicy juice has always been the best esp cuz they have two sizes for 25 and 15 grams of carbs depending how low!! Also I don’t use these anymore but when I was little my parents always had cake icing and some type of fruit snacks that were just quick sugar. now I usually carry glucose tablets and bars (Lara, luna, clip, granola, etc) …good luck!!!
This is my first time logging on. I’m a parent of an amazing and courageous 5 year old boy. When I read your post it reminded me of myself three years ago. I was going crazy not knowing what to do and how to help. A little over two years ago our Dr recommend me to get a device called Dexcom GCM. It really helped me to monitor his sugar level and I could see it on my phone. This is a great device. Look into it.
Amanda, I’m hoping things are a little better now, a few weeks out from your post. Your daughter is in the honeymoon phase, with her pancreas continuing to produce insulin in varying amounts, so yes, her insulin needs are going to be swinging quite a bit for this first year. Once you get things somewhat “stabilized”, they will continue to shift, because your sweet girl will keep growing and growing and growing! And that will cause her insulin needs to increase. But it’s all very gradual, so try not to worry too much. YOU will become THE expert on your daughter’s body. You will ultimately know it better than her doctors and you will come to recognize her need for more insulin even before the doctors do. All that will come in time.
Hi Amanda,
Our son Bobby was diagnosed at 23 months, and he just turned 4. Please believe me when I say that it will absolutely get better. I look back to his diagnosis week, and I can’t believe how far we have come. It’s just another part of his life now, and we remind him every day that he is our superhero and that he can do anything!
My best three pieces of advice for you are to:
Seriously consider the Dexcom CGM device. I firmly believe it has saved Bobby from many lows that we never suspected. It has alarms for highs and lows, and you wil all be able to sleep peacefully through the night because of it. It’s my ‘right arm,’ and I pray Bobby will always be able to use one.
When you start to feel like opening a book, please read “Kids First Diabetes Second.” It’s the most useful book I have read so far, and it reminds you that you can’t let diabetes run your life or your child’s life. As hard as it is to imagine right now, everything will become second nature. Surround yourself with supportive people, and keep telling yourself that you CAN do this. It just takes a little time and practice.
Never be afraid to reach out to your team of doctors and certified diabetes educators. I was on the phone quite a bit in the beginning. These people are there to support you and help you make the right decisions. For a small child, running higher is safer. Once you have a CGM, you will be able to find daily patterns in glucose levels and work on fine-tuning the doses. It will all come with time.
God Bless!
All the best,
Kathleen, T1D Mom
Hey, I was diagnosed when I was 2.5 years old. It took months of my parents bringing me to doctors before ending up in ICU for 2 weeks where I was finally was diagnosed. Figuring out the correct insulin amount took awhile and constant monitoring but eventually it worked out and I’m in my 30s now
I am really sorry for this, she is so young. I have been T! for 40 years… I have been on the old old insulin, with no way to check bs (70’s). There is no easy way, but let me tell you this. High bs is bad in the long run, but low bs is a killer. And if it doesn’t kill, it destroys enough of the brain to affect someone forever. So taking it slow is always the best. BUT remember, the endo’s are just dr’s. They are not usually the diabetic. They don’t want to hurt anyone. Everyone is dif. Esp toddlers!. Please raise this child to trust their body, not JUST the tech. I see so much blame on the pumps and the companies. Usually it is because many new T1’s think there is a certain fix. There is not. It is all to make it easier. Our bodies change daily. Especially when they become teenagers. In the end, this will be just what she is… and she won’t think anything of it. Because it was always that way… It is no different than you doing something your whole like. It will be all she knows. Take some comfort in that. Just remember that doctors play it safe, and the only real fix is you knowing more than them. Argue with them if it doesn’t seem right. When they say something can’t happen , when you know it did, then obviously you are right. It is not worth your daughter’s life. You will find the right groove, but always be ready for it to change. Doctors suck. I had one ask me last month why I thought I had ketones. Umm, because I know when I have them. Yet a doctor challenged it. But I am used to it. It will not change. Blood sugars will be affected by everything in life. So there is no ‘do it like this and all will be well’. Until your child is old enough to really verbalize what is going on, running a bit high is always the best option… Always.
It took me 4 ER trips and 6 Urgent care visits and a Coma later for ‘Vasser Brother Medical Center’ (Claims to be the leading Diabetes hospital) to give me the diagnosis. You aint alone in the feeling of being blown off. I feel you, just keep pushing through!
Good for you pushing the docs to run the tests. So many kids go undiagnosed. My son is 4, diagnosed 4 months ago) and I just wanted to validate your anxiety. I think about it and worry about him pretty much all day every day. I’m hoping it eases up and others have said it will. My nature is to do things “right,” so not being able to stick to one routine and have it work every day is hard. I’m having to come to terms with the knowledge that we will always be trying to hit a moving target and that is ok and normal. Love to you!
