My son was diagnosed a few weeks ago, one week before his third birthday. As with most, he’s still producing some insulin and I am trying to find out if there are any treatment options to preserve that function. I keep reading about the ability to preserve it with “aggressive treatment” of the newly diagnosed, but no specifics as to what that treatment is or how to get it. Anyone have any information? We live in Bozeman, MT so resources or options nearby would be best.
There has been research underway for years on different meds, etc. to try to preserve what function is left. It is still in experimental stages, however. Exercise to preserve beta cell function in recent-onset type 1 diabetes mellitus (EXTOD)--a study protocol for a pilot randomized controlled trial - PubMed
Your son is in what is referred to as the “honeymoon phase”, because his insulin supplementation needs are probably still low to moderate. We are still trying to figure out what cases the autoimmune response by the body in mistakenly attacking these cells. As the remaining cells die off, his insulin will need to gradually be increased. This process can take a few months to a couple of years. Maybe someone else can share things that have been of some help, wish I had better news for you.
hi jbyerly,
I think you might be reading about beta cell preservation using “intensive diabetes therapy”, but the article I read was for Type 2 diabetes and the preservation they are referring to is NOT from an autoimmune system attack. You might want to check with Joslin Diabetes Center (Boston), JDRF for clinical trials, and maybe the Faustman Lab (also Boston) and referrals from your endocrinologist.
sorry about your son’s recent diagnosis, I hope you are getting enough support. The first year can be very rough. Please post often and ask questions.
kind regards,
Our son was diagnosed five years ago when he was a junior in high school. His doctor immediately put him on Januvia and Metformin along with fast-acting insulin and slow-release (Humalog and Lantus). We had to fight with our insurance company to pay for the Januvia and Metformin since his diagnosis was Type 1. He also lost all thyroid function at that time and takes synthroid. His last A1c was 6.2 and he has never been above 6.7. His doctor has him on an unrestricted diet. He can eat anything he wants in the morning without needing Humalog - he needs 4000 to 5000 calories to maintain his weight. As the day goes on he needs more insulin to control his BG but has to test before giving himself any since he never knows when his own Beta cells will kick in. He uses between 10 and 20 units of Humalog a day. He is very careful about giving himself insulin before bed and a pump is not an option for him, because again, he never knows when his body will produce its own insulin. He tests himself 8 to 10 times per day.
I believe if he watched his carb intake he could go without any fast-acting insulin but he needs those carbs to maintain his weight. He is now a senior in college and is a two-sport athlete; in high school, he played three sports. In college it has been harder than in high school because his schedule is different every day along with early morning and late night practices.
Unfortunately, we have been unable to find any other T1 diabetics like him. We don’t know whether or not it’s because his doctor started him on this treatment plan right away or not. All we know is that it has worked - he has no secondary complications.
I was going to say…I’ve never heard of this situation! Thank you for sharing your story. As long as you’re able to preserve whatever natural insulin response he has, that is best, although the unpredictability of it must be so frustrating. Hope this can keep up as long as possible.
The other thing about our son is that when he was diagnosed, he was doing vigorous exercise for two to three (sometimes more) hours per day and he continued to do that after diagnosis. Now that he’s in college, he doesn’t exercise as much but still a few hours a day - swimming, yoga, running and lifting along with regular football and baseball practice.
I just read where there is a clinical trial starting where they are using intensive exercise to see if recently diagnosed diabetics can preserve beta cells. Maybe that’s why, or, maybe it’s the Januvia or Metformin or…maybe it’s just him? I don’t know but I think this phenomenon is being recognized more and more. See New Diabetes Treatments Aim for Never-Ending Honeymoon | UC San Francisco