My six year old son was diagnosed T1 on 05/30/2013 (5 days ago). We have yet to find a 'formula' to bring his readings to anywhere near normal. His target is 150 and the closest we have come was 167 yesterday morning. Everything else has been 250-400. I have spoke with his endocrinologist daily and she has made adjustments. Currently he is 1:15 for carb ratio and correction is 1 unit for every 1 over 130. He receives 5 units of Lantus at bed time along with a correction if needed. All of those have changed over the last 5 days. I understand that it might take awhile before we figure out but I feel so bad for my son as I can tell when he is high. He was 356 before we gave him his night time dose and he was tired and cranky (negative on Keytones though). How long did it take some of you (specifically with children) to get into a place where levels began to stay around normal?
To add to the stress of a newly diagnosed child, my family is supposed to move to Thailand for my husbands job (active duty military) in two weeks and now that is on hold until we figure things out here and find doctors there and get re-approved with the military. Oh, and because we were planning on moving, our lease is up technically on the 14th, but I was able to extend it until the 1st. I have never been so stressed.
I desperately need support getting through the next couple of weeks. I am a mess..
I was diagnosed at age 9, and even though it was almost 22 years ago now, I still have the logbook that my parents started. The first week after I got out of the hospital (I was in the hospital for four days), starting at dinner on that day, my readings before meals looked like this:
Day 1: 362 533 Day 2: 319 576 419 466
Day 3: 194 475 254 358
Day 4: 122 507 319 396
Day 5: 140 322 293 277
Day 6: 234 457 283 423
Day 7: 171 549 374 518
It took several weeks before my readings were anywhere close to normal, although this was on an older insulin regimen so for your son it will hopefully be shorter! Like you, my parents were in contact with a doctor daily for the first few weeks to adjust doses. I think doctors are pretty conservative with kids because although highs are bad, they are safer in the short run than lows, especially for kids. In a few days or a few weeks, things will probably be smoother, but there will always still be some highs and lows.
Good luck, and keep on posting any questions! This community is incredibly helpful!
Your issues are particular to a newly diagnosed child. Both you and your child need to learn a lot. There are many such communities online, just do a search on "children with diabetes" or CWD.
One community that I know is highly supportive of people just like you is T1P, short for Type 1 Parents. These are not parents with diabetes but parents of children with diabetes. They are a warm and caring group. I highly recommend.
As I said, there are many support groups for people in your situation. Do a search and see which community is best for you.
Good luck. It will get easier, just not right away, and you are not alone!
Unfortunately it can take quite a while. If he is running way too high before meals and in the morning before eating it is most likely the lantus dose will need tweaking. I feel for you completely but want to reassure you as we’ll that you will get things dialed in over time. You will learn a little more every day for months and eventually what is s terribly overwhelming right now will be as routine for you and your son as brushing your teeth. But I don’t want to kid you, it takes a tremendous amount of work, reading, taking notes, learning, and trial and error to get there, and its not easy. We’re all here to help.
When I was diagnosed at the age of 57, it took me about a month to get my readings near normal even with emails and calls with a nurse every three days. Within 6 months, my A1c was below 6. It takes a while to dial in the right doses and a while for our bodies to respond to treatment but after that everything can come together pretty quickly.
Good luck with all that you're dealing with and may everyone you meet with show you kindness.
As everyone says it will take time. But to lessen the stress on you it will help to get some books that explain what you and his doctor are trying to figure out. The best of the books explaining diagnosis for a young T1 is "Type 1 Diabetes" by Hanas. I can't stress strongly enough how good a book this is for someone in your shoes. I REALLY wish a book like this had existed when I was first diagnosed 38 plus years ago. I think this is the best all-around book for explaining what T1 diabetes is, and how to live with it, and it is the book that I continue to refer to most.
A second book that you should get will explain and help figure out how to make the insulin adjustments that your doctor is working on. It is very hard for a newly diagnosed T1 to achieve "balance", and when he starts on the Honeymoon period his needs will change more. But the best of the books that describe how to achieve "balance" are "Using Insulin" or "Pumping Insulin" by Walsh, and "Think Like a Pancreas" by Scheiner. You should really get one of these books too, so you are not completely dependent on your doctor for all treatment adjustments. The more you understand this process the better, and the better you understand it the less stress you will feel. Good luck; it WILL get better.
Boy that's a lot to have to manage! I'm a T1 myself, not the parent of one, so may not be the perfect person to respond, but my heart goes out to you. And I would say that 5 days is still a pretty short time for getting this disease in control. The body has its own way of adjusting to treatment, and severe insulin reaction is a lot more dangerous, in the immediate term, than high BG, so the adjustments need to be incremental early on so you don't overshoot and have even worse problems. The numbers you gave seem pretty reasonable--I wouldn't panic just yet.
I say this as someone who is trying to adjust to using an insulin pump for the first time and running into the same frustration and impatience about MY levels. So it's good advice for me too. :-)
Thanks everyone! Especially Jen with posting your initial numbers. Those are pretty similar to where we are with my son. I understand this is going to take time, it is just frustrating. I am going to look at some of the books that were recommended. I need all the help I can get at this point! Thanks again!
I was 11 and am now 62. The equipment, insulin--the whole thing was so different 50 years ago. My suggestion--I know it is hard--but breath deep and relax a little.
T1 is an up and down thing and there is never "normal." Find a group--the parent of T1 group here is a great start. Keep the faith. You son will need your strength.
I'm father of a 4 years old baby, she got diabetes at 14 months. I'm from Italy, but understand and feel everything you feel now.
We know, everybody here knows what living with diabetes is.
Be patient, step after step you'll learn how to manage it.
It's a long run, you have to keep strong and endure a long journey and live along, and enjoy living.
Everything will get better and better, believe it.
As for the "tips":
my daughter found better injecting lantus in the morning, so to get a higher dose without getting ipo at night, but a higher basal during the day. Ask your endo, usually you up the dose and wait 2 days to see if it works out. If BGs at night and at wake up are good enough, you got it and you can find the right bolus doses. Ask, ask ask your endo, you need much support and teaching now. Wish you the best and stay with us, everywhere you'll go.
My daughter was diagnosed 12 years ago and I remember how overwhelming it was to learn everything I needed to know to keep her alive. The book recommendations you received are excellent. What worked for me was to learn as much as I possibly could and become the “team leader” in Sam’s care. The medical professionals are part of the team, but by taking an active role rather than a passive one worked best in our case.
Your son’s numbers don’t sound unusual considering he was so recently diagnosed. Sam takes Lantus twice daily rather than once a day because we learned that it doesn’t work the full 24 hours for her. She experienced more pronounced highs and lows when taking it once a day. You may want to ask the endo about splitting the dose.
Now about you… You have so much on your plate! My heart hurts remembering how I felt back then. Someone gave me this to read when Sam was newly diagnosed and although it made me cry, it also helped get me through. http://bit.ly/10Yw7hK Take time to cry. My only real alone time was in the shower and it became my crying time. Daily. And then one day I didn’t cry. Do I still cry? Hell, yes. But not so much. I see what a strong woman I’ve raised and know that diabetes is part of the reason she is who she is.
You will get through this and know that you are not alone!
It takes a while. My son was diagnosed 5 years ago and about a month ago he began pumping. That is taking a while to get numbers set right so his sugars are steady. Your son is a brand newborn to T1 and it's best to take it one day at a time.
YOU SHOULD ASK YOUR SON DR ABOUT THE V-GO check out this website www.go-vgo.com my numbers was very high every day for years no matter what i did nothing was working i was on Lantus at bed time and Novolog at meal time also Metformin HCL er 500mg.just check the website out hope every thing help .
Lucy....Jenn is referring to her 6 year old Type 1 son!!!!
"Who Should Use the V-Go?
If you are an adult with Type 2 diabetes and you answer "yes" to any of these questions, the V-Go Disposable Insulin Delivery Device may be right for you..."
This, according to the info on the web site, is not meant for Type 1...and nor for children.
Hang in there! One reason the tweaks and changes to insulin dosing need to go slowly is that 200s-400s without ketones, while they may make your son tired and cranky, aren't typically dangerous short term. OK, they are dangerous for your stress level and feeling overwhelmed—that IS important to acknowledge. Whereas severe lows, especially when you and your son are new at recognizing them and treating them, can be much more immediately dangerous and require emergency medical attention. In time, you'll realize that a 167 practically is a 150 and you'll say "good job!" And if you can't say that to yourself, someone here on tudiabetes will say it to you :-)
Thanks for posting that Renee, I am sitting here crying. And I'm the one with D. And I agree, having D for 38 years has most definitely contributed to who I am and how I approach challenges in life whether from D or from elsewhere. I am sure my Mom was devastated by the diagnosis, and she loved Erma Bombeck, I will send the poem to her.
I think this is very normal for a child that has been just diagnosed. It does take a while to get the numbers to where they should be. I would say it probably took us anywhere from a few weeks to a month and my daughter was 18 months old at the time.
