My eight-year-old daughter was diagnosed in March, 2011 with Type 1. When she was diagnosed she was put on four insulin shots per day. After returning from vacation in June I decided the family needed to eat healthier. I quickly realized that this did wonders for my daughters BG levels. I was tired of hearing the diabetic experts tell me, "feed her anything she wants and offset it with insulin" so I took her to a nutritionist. We started following a low glycemic diet and since then she hasn't had any insulin, none.
I'm looking for others that have experienced this. How long did it last? I feel my daughter is safer and overall healthier and I want to extend this "honeymoon" period as long as possible. I don't want to get my hopes up but I don't know what to expect.
First, generally agree that following a low-glycemic/low carb diet is a good thing for T1s. Back in the dark ages, many of us T1s followed a fairly low carb diet (insulins weren't as fast acting back then, so good control was often achieved through reducing carbs). Faster insulins have meant that we type 1s can eat more of what "normal" people eat, but I don't always think that's a good thing. My completely personal opinion is the pendulum has swung too far the other way. I definitely use my pump from time-to-time in order to allow myself to have a treat (cake, cookies, whatever), but those foods are the exception and not the rule. I avoid bread, rice, and pasta and try to keep my carbs around 100-150 per day (most of which come from fruits and veggies). Again, I do indulge from time to time.....I do not agree with constantly eating whatever I want and off-setting it with insulin. For me, that approach just doesn't work. It results in too many highs and lows.
As for your daughter's honeymoon period, there is no telling how long it will last. Some kids go through honeymoon periods that last months...and some experience periods of honeymooning for upwards of a year. After the onset of T1, there are still functioning beta cells in the pancreas, but they slowly fizzle out at an unpredictable rate. There is no telling how long that will take. I have never heard of diet extending the honeymoon period, but I assume that it's possible.
Don't assume your daughter is magically cured (unfortunately some parents mistake what you're going through as "cure" and fail to realize that it's just honeymooning). Mostly likely, she will slowly begin to need insulin again. Make sure you're checking her BGs regularly and tracking the results. And make sure she understands what is happening.
I have to admit, it's a bit of a relief that the first response wasn't..."What the HECK are you doing feeding her a low glycemic diet". I tend to agree with you that the pendulum has swung too far, especially given the fact that the experts never even hinted that we could control this with diet for some time period or even that it was a good idea. I know it's not going to last forever but I figure every day is a blessing.
I check her BG 6 - 7 times a day because I'm always half expecting the honeymoon period to be over that day.
I'm also wondering if others have been completely off insulin. This worries me on one hand because the docs were adamant that I get her back on it as soon as possible. But putting her back on and fighting lows all the time doesn't sound like a good idea either.
I agree with MyBustedPancreas. I can't speak for what is best for kids, but I am a low carber. I don't do quite as low as Bernstein recommends - I do about 55 grams a day. I will have a treat once in awhile also, but it isn't something I do on a daily basis.
I have heard of people completely stopping insulin during their honeymoon period. I can't see why they would want you to give her insulin if her BS is normal. I would think that would be dangerous.
first i would like to preface any arguement with; you don't have juvenile or type one diabetes UNLESS you need insulin to survive....
now please contiunue with misinformation and propganda halle berry.
if your body can regulate your blood sugars naturally then you don't have this auto immune disorder although she may have another...i'm not sayin but i'm just sayin...
There are some endos who, for awhile, believed that newly diagnosed people could maintain some pancreatic functioning if they started insulin early and stayed on it. The theory was that the insulin was kind of like life-support for the pancreas and prevented the remaining functioning beta cells from dying off. Even after onset of T1, people frequently maintain some level of insulin production for years, albeit usually not enough to stay healthy. But, when you have any level of natural insulin production, you generally have better control. For awhile, they were even testing to see whether administering small doses of insulin to non-diabetic siblings of T1 could delay prevent the onset of T1. These studies did not produce any favorable results that I am aware of.
Some endos still may believe this theory that taking insulin can slow down the loss of beta cells, even though there is no conclusive evidence to indicate such.
As for a low-glycemic diet - most dieticians I've come across do not really agree with low carb diets. However, I have almost 3 decades worth of experience with T1, which basically makes my diabetes older than most dieticians I've come across. The bottom line is that, for me and for many others I've talked with online, the more carbs they eat, the harder it is to manage their diabetes. This is because you're taking more insulin to cover those carbs and, as a result, there is more room for errors. Pasta, rice, and bread are my EVIL foods because they send me on the glucocoaster from hell.
Again, many of us followed what is today referred to as a "low carb" diet via the exchange system back in the 70s and 80s. I think some dieticians/endos want to allow kids to be "normal" by not limiting what and how they eat. And I understand that to a point, because it was hard growing up not being able to eat the way other kids ate. BUT, the reality is that our pancrei don't work properly and pretending that everything is fine when it isn't will do more of a disservice in the long haul. Personally, I think high carb diets are bad for everyone, and there's nothing wrong with limiting those carbs and following a low-glycemic approach, even for a child. As long as you're checking her BGs each day and realistic as to what the outcome will eventually be (that she will need insulin at some point), I don't see the harm at all in what you're doing. Use this as a learning period for her to learn about carbs and how different foods affect her BGs. That will help her if and when she requires insulin.
You are correct, her endo wants her on the insulin in hopes to slow down the loss of beta cells. She told me to get her back on Lantus as soon as her BG was consistently above 100 in the am. So far, it is not. It's in the high 80's to mid 90's in the mornings.
We are learning so much about how food and food combinations affect BG. It's made us a healthier family for sure.
I know we are just starting this roller coaster of a ride and I've doubted just about every decision I've made, at least once. Thank you so much for replying to my post.
Dangerous...that was my thought as well. If I've learned anything during all this is that you've got to listen to your gut too.
I don't count carbs so I don't know how many she has per day. We just avoid high glycemic foods and when she does have something that is mostly carbs, like fruit, then I make sure she also eats some nuts with it, or some other good fat or protein.
I know I will probably have to count carbs someday but for now I'm feeling lucky that I don't.
Your logic makes perfect sense to me and is exactly what I would do if I was in your situation. Preserving Beta cell function will likely be the best/easiest way to keep your daughter healthy for a long time to come. While there is no decisive conclusion on how to preserve beta cell function, I would bet the methods you are using are likely the best. A low glycemic index diet will decrease the amount of insulin she needs to produce right after a meal. The best theory I have heard is that less stress (from extra work secreteing insulin) will allow the remaining beta cells to survive longer . The idea would be to reduce meal time normal beta cell insulin production shown here: "normal" insulin production with meals
(This is the theory that has lead some T2s to start insulin as well = preserve beta cell function.) The best ways to do this are using a low carb and glycemic index diet.
Good luck on your adventures and a 5.6 A1C is great result, no matter how you are achieving it.
I haven't been doing this long enough to feel confident about my methods. I got the A1c result and had a brief moment of self assurance and then quickly started questioning myself again. At least now I don't feel completely alone!
The one good thing about diabetes (if there is anything good about it) is that it's a disease of total self-management. If you're testing your daughter each day, you can easily see whether what you're doing is working and whether she needs insulin again. If and when she loses beta cell function, you will clearly see it in her BG results.
Also, don't forget you can check her A1C at home. I do this periodically and it's pretty accurate.
Yeah, I would definitely not put her on lantus at this point. You're making the right decision. Lows can be just as dangerous as highs, and if you're checking her regularly, you'll catch those highs, so don't worry. The lows would scare me more with a young child.
Yes, D is a learning experience for everyone and I do think that many of us with T1D live healthier lives because we are so much more tuned in to what foods do to our bodies and how to eat in moderation. It's hard, but the pay off is a hopefully normal life with few complications.
Most importantly, don't doubt your instincts. You're doing everything right (at least, everything that I would do, and I've been dealing with T1D longer than most endos have been endos). As long as you're frequently checking her BGs, you will catch it if and when she starts to creep up again.
Just curious, but have they tested her for other forms of diabetes (MODY, type 1B, etc)? There are some forms of type 1 that are atypical and don't present in the classic way. Some folks with a particular form of MODY (which is caused by a monogenic mutation) can sometimes get by without insulin or just an oral sulfonyrea. Does your daughter have antibodies?
But I don't think it's unheard of for a kid to honeymoon for a year or more, particularly if they have excellent control and are eating low carbohydrate foods (so not putting tons of demand on their beta cells).
Although it IS also possible that it might be something like MODY (which can be misdiagnosed as Type 1), if the "honeymoon" starts to continue indefinitely ...
I think if it works, do it. If her BG levels are normal without insulin, why add insulin? "If it ain't broke, don't fix it."
Also, here's another thought for you -- if you've switched over to a more veggie-focused diet, and eliminated simple carbs like sugar & flour, you may also have reduced the level of pro-inflammatory compounds your daughter encounters. This would have (in theory) the net effect of decreasing the reactivity of her immune system. Without intending to, you may have slowed the autoimmune attack on her pancreas and therefore extended the life span of her beta cells... simply by moving to a low glycemic diet.
So stick with it! It's good for her, and it's good for you. Just because her doc doesn't understand it doesn't mean it's wrong.
That's exactly what the "dietitian" (I put that in quotes because he's more than a dietitian, more holistic) that I take her to is trying to accomplish...to slow the autoimmune attack. We've removed Gluten, Dairy, sugar etc to not only lower the glycemic index but also to slow the attack. No idea if that is a possibility but I do know that this diet is working very well for BG levels.
I'm also sensitive that she is only eight, well actually just turned 9, and this is a lot for her to take on. I've heard the argument of just letting her be a kid but these days it's as common to have some dietary restriction than not. She's a healthy, happy kid. She just gets homemade treats instead of fast food or junk food from the grocery store. And you are so right, it's healthier for ALL of us. My husband and I both lost weight and my non-D daughter is benefiting as well.
I've not heard of MODY but the endo said there is no doubt this is Type 1. Believe me I asked over and over again. Also, she was on 3- 4 insulin shots a day prior to us changing her diet, and experiencing many more highs than she does now. Even then we ate relatively healthy by most standards.
Do you have a trusted source (website) for more info on MODY?
