I should state right off that my daughter is 10, and her carb limit is WAY over Dr. B's - 75 to 100 a day. Dr. B, which wasn't written for children, but I believe in low carb and I completely believe the rule of small numbers.
A friend of mine from long ago has a boy who was dx T1 about 5 years ago. We only talk rarely. They don't follow anything close to low carb - as much fruit, potatoes, and pasta as he wants - and she says his numbers are "good" and that he gets a lot of praise for his D management from the endo's office.
Clara and I were at the endo today and one of the CDEs is T1. After both she and the RN reminded me that carbs = energy (to which I said, yes, but they're not the only source), the CDE told me that she eats A LOT of carbs, specifically 180 yesterday.
We've been having some control problems recently and her A1c was 6.4. Clara and I expressed disappointment; it's the higest A1c she's had since dx. The CDE was praising her numbers and was surprised that we thought we could do better. Maybe that's where the difference lies.
Anyway, I'm feeling a bit discouraged. Remind (encourage) me again. Why in the heck am I limiting carbs?
(Yes, if everyone else jumped off a bridge, apparently I would at least consider it too.)
I can think of a few reasons…
Avoiding constant yo-yoing between highs and lows.
Avoiding being higher than 140 all the time, so that you don’t get things like neuropathy… which can start happening between >140 and 180 mg/dL…
Avoiding terrible weight gain, from having to dose more insulin for all the extra carbs.
We do the best we can, with what our bodies give us. I try to incorporate not just lower carb, but eating according to total available glucose and glycemic load, as much as I can (not to be confused with glycemic index). So I do my little tricks… I add a lot of non-starchy veggies, where I can, to fill the tummy… and not pass my limits, or go hungry… I eat a lot of things after they’ve been frozen or left in the fridge for 12 hours (starches), they tend to affect me less, this way… Particularly with that dreamfields pasta… I’ve tested it on myself again and again, if I ate it straight the day it was made, it would spike me at 2 1/2 hours, but if I ate it after left in the fridge for 12 hours, then it doesn’t even climb past 120, at all. I’ve made a lot of little tricks that seem to work, at least for me… Maybe there are things you can tweak, or trick here and there… I don’t know. I made burgers last night, and I’ve stopped adding bread crumbs to them, as I didn’t have any on hand… and now I use parmesan cheese, and a tablespoon of mayo (because I didn’t have eggs)… and it came out perfect, with that low carb 80 calories and delightful Sarah Lee bread… and I ate it with a lot of spinach, and cucumbers… My spike was 122. I was pretty impressed. Don’t lose faith.
Well, you’re doing it because your goals aren’t the same as your friend’s goals or the CDE’s goals. We all know that CDEs are encouraged not to push for normal blood sugar levels because the liability for hypoglycemia is a clear risk, whereas a diabetic suffering from diabetic complications is “to be expected.” I don’t know what’s right for a child in terms of carbs, but if she has never been above 6.4 and she doesn’t get many hypos or seem sluggish/low energy, then you must be doing something (and probably many things) right.
I tried to achieve the same level of control (A1c of 5.0) that I have on my low carb diet (mostly Dr. B with a paleo twist) and was quite scientific and rigorous about it and it just wasn’t possible for me (I emphasize “me” as there may be some that is does work for, but that was not my personal experience). As mentioned by Lizmari, I experienced many more highs and lows then with a low carb diet. Wearing a CGMS I showed my numbers to a T1 CGMS distributor and she said my post prandials were smaller then some non-diabetics she has monitored. So I think on the one hand eating the way Dr. B recommends can actually give you better blood sugars then even non-diabetics as I often won’t rise over 120.
Also, I am not sure what age your daughter is, but Dr. Katharine Morrison just contributed this to a website we both run on low carb diabetes management specifically on the teenage years which present some unique challenges regardless of the form of diet used:
Compliance with Dr. Bs diet is NOT easy–anyone that says it is has probably only been on it for less then a year, but for me it is worth it as long as you take a very long view of the consequences of not having as nearly normal blood sugars as possible. I spent many years with post-prandials way over 140 and over time that catches up with you–it can take 20 years, but it will catch up with you.
Best of luck finding the resolve to stick with it, and don’t be afraid to continue to experiment and learn. One other thing that helps me is variety–there is a free 300 page pdf of recipes on www.dsolve.com which can help with compliance by keeping things new and different.
It is my impression that most endo’s and CDEs would consider a HbA1c of 6.4 for a child to be low. And the primary reason is that children are often subject to large blood sugar swings, they are small, they are active and they naturally don’t display a lot of diet self discipline. And it is unreasonable to expect otherwise for a child. The key thing is whether you are avoiding hypos. If you can maintain a good HbA1c and be safe avoiding hypos, then you are doing great.
I can understand feeling discouraged, like it doesn’t matter, but it does. Everything we know suggests that higher than normal blood sugars have a negative impact on your health and quality of life. Don’t compare your situation to others, this is about you. Just because 6.4% is “good” relative to someone else who doesn’t watch what they eat doesn’t make it “good” for you.
You claim to “have the faith,” so have some confidence. Your daughter is doing great. A HbA1c of 6.4% is not a “normal” blood sugar like Dr. B recommends as a target, but you are not following his diet exactly and you have a child, not an adult. Set reasonable expectations and include targets that recognize control that minimizes hypos. And don’t let Clara (or yourself) think for a minute that a HbA1c of 6.4% is a failure. It is just a number. Things will be harder when she reaches her teens, and even with a tighter diet and more attention to control, it may be unreasonable to hit even a 6.4% during those years.
It’s so difficult to control BG with a child’s growth spurts, which to me is all the more reason to keep things as level as humanly possible with carb restriction to avoid the roller coaster. The high/low see-saw is damaging.
My goal is to take as little insulin as possible to avoid insulin resistance (which some T1s can develop), to avoid weight gain &, of course, to stick to the tried & true law of small numbers.
People say “everyone agrees that 180 carbs is ideal. My CDE, NP, endo all told me this. I’m in great control as long as my A1c is under 7 or in the high 6’s.” Well, they’re all getting the same info from the same source. This is just convention. Know I sound like a broken record, but health professional are more concerned with the short-term goal of avoiding lows, for which they could be liable, than the long-term effects of highs. Lows are certainly not healthy, but the focus is not on helping PWD achieve more normal, level BG. This goal is not achievable on high carb diets, so naturally higher BG & correspondingly higher A1cs are acceptable to this way of thinking. It’s their paradigm. Their paradigm is incorrect. Good enough for a diabetic isn’t the way to approach diabetes.
Aside from the excellent reasons mentioned by the others, Clara’s dietary patterns are being established now. Even though a child may need more carbs than an adult, it’s going to be very difficult on her to start going low carb when she’s older. I shudder when I read about people whose kids eat high carb diets because they “need & like” high carb foods because they’ll do the same when they’re adults. It’s just like non-diabetic kids who eat junk food now. They grow up to crave crap.
Clara’s goals & yours for her aren’t mainstream. Sad fact that you’re going to encounter resistance from the medical community. I’ve learned to shrug it off. No jumping off bridges:)
Well here’s a kick in the pants. I was talking to Clara while making our (low carb) dinner, and I told her that I’d had a crisis of faith about low carb because it feels like no one else is doing it and did as she wondering about it too? She looked at me like I was a bit dim and said, “No.” I said, “Really? Why are you low carb?” She replied, “It helps me NOW. It controls my sugars NOW.” Well you can’t ask for clearer answer than that.
You’re right about the food habits, Geri. My friend with the T1 son said that low carb might have been easier and that he’d probably never go low-carb now, since he’s a senior in high school and is too used to eating whatever he wants.
Big hugs to Clara! An independent thinker & wise young lady. Send her quote to Dr. B for his next book.
You’re such a wonderful mom.
I used to have a blog written by a UK physician about her T1 son’s low carb diet. I think Alan sent it to me. Also had another by another mom whose child was also low carb. I’ll see if I can find them again to send you.
Thanks, Alan. Now to find the other one I had.
I’ve only had the LADA dx for a year, but followed Dr. Berstein’s regime from the very beginning. It is a way of life, now, just like friend who are gluten free because of Celiac Disease, which is often associated with Type 1’s. It seems to be working in preserving my pancreatic function. I will need insulin eventually, but I’ll take what I can get. I have an A1c of 5.2, and my fasting glucose is now 88. However, I am exercising religiously doing hiphop and Zumba, and I think it makes a big difference. When I’m not exercising, I’m very active taking care of my 7mo grandson, and 15yo twins. Initially, I had problems exercising, but truthfully, everything that Dr. Berstein promised has come true for me. I’m so much healthier, and I don’t swing because I don’t do carbs. I get thirsty even if I cook vegetables too long. I don’t crave carbs anymore, and I’ve lost weight.
One thing you may consider is adding exercise to Clara’s life. I am able to add a few more carbs in like my high fat yogurt and some milk, or maybe a few more vegetables or larger portion of salad. From what I have read, exercise is almost like taking medicine. It would be a good habit to establish now, while she is young - something the whole family can do together.
BTW, has Clara ever been tested for Celiac? My diagnosis for LADA was, in part, due to my genetic relationship to Celiac.
I’ve got the bible of Endocrinology, Williams Textbook of Endocrinology. The average US HbA1c is estimated to be in the 7.5% to 9.5% range, so they see no practical significance in lowering the target. It does say that the goal should be as close to normal without hypos in the individual patient (<6%). More caution with children and the elderly and those with other medical complications…
This is not just some blog. Dr. Katharine Morrison is a leading authority on low carb diets and the best known advocate for low carb and Dr. B’s methods in the UK. You can read in detail about her experience on Phishery’s site (http://www.dsolve.com/sucess-stories/19-success-stories/64-success4). Dr. Morrison is a member of Dr. Bs forum, and you may well find she would be willing to correspond via email with you.
The US average of diabetics is 7.5 to 9.5, or this is the average for the whole population?
Clara has been tested for Celiacs and was negative.
Thanks for the links everyone. The dsolve.com articles were especially interesting to me.