What Parents of T1 Children Need to Know .- Dr. Bernstein's Diabetes University

I think this is something to consider and ask your Dr about.

this is a closed group that you need to join for T1 kids, but this is their public page

there is a lot of confusion, bernstein recommends a low carb higher protein diet not a LCHF diet

Dr. RD Dikeman and Dr. Bernstein discuss issues of particular importance to parents of children who have Type 1 diabetes.

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No thanks! In my medical opinion, growing children need more carbs. I’m not talking carb-a-go-go, just more carbs than Dr. B believes. (LCHF is fine for adults.) And the last thing a parent should do is limit their CWD’s food choices and make them eat differently than their peers when they already feel painfully different and resent the control D has stolen from them. Way to develop eating disorders during adolescence!

jack16, I have to be honest with you: from my viewpoint, you “push” LCHF an awful lot, even if you preface what you post with phrases like “just something to consider”.

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EDIT. I got a notification of a like that brought me back to this thread, Since this thread @rgcainmd has changed (converted to the cult :slight_smile:) to a LCHF way of eating and I think is still seeing the benefits

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If the child has good BG control, not roller coasting and growing well. There is no need to reduce their sugars/starch carbs. If this isn’t the case, modifying high sugars/starch carbs intake, keeping all the other veg and salads carbs, can give good results.

The link to the T1 kids on FB is an example. A parent may not need to go as far, but there is no doubting the impressive results this group is getting, a simple look at the before and after meter graphs pictures from the link above. shows this.

As far as I know, there is no medical requirement for sugars/starch carbs. Some Dr’s claim there is a medical requirement for proteins, fats, vitamins and minerals, but none for any carbs.

the Dr interviewing Bernstein talking about his T1 son

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I’ve participated in the Type 1 Grit Facebook group. While I am not a parent of a T1D child, I do have T1D and I am a parent. I’m here to tell you that this group of parents are raising healthy children that are easily keeping pace with all the age-calibrated growth charts. And their children eat a wide variety of food and seem to adapt easily to this way of eating.

Their A1c’s are stellar, most in the 5% range and many in the 4% range. You can’t argue with these results. If I was raising a child with T1D I would rather their A1c be sub-6% than not. Children have decades to live with this scourge and lower BGs will be better for them in the long run.

I know this is a touchy subject and feelings run deep when people talk about their children. Just know that Type 1 Grit parents group care about the same things all parents do when raising children. They are die-hard Bernstein adherents and I don’t agree with that deep of a commitment to any one cause. They do make exceptions, however. Dr. B does not like insulin pumps but most of the Type 1 Grit children use pumps.

I only speak up because I see diabetes as a nasty enemy. It’s capable of inflicting enormous harm over time. We are offered the chance to control it and there are degrees of control. And peoples’ metabolisms vary form person to person. But reaching for better is better. I’m also cognizant that sometimes we need to be happy with “good enough.”

From my personal experience, for 28 years I was reasonably happy with my level of control, A1c’s ranging from 6.5%-8.5%, mostly in the lower part of that range. When I ended up with a diabetes complication, I found another gear I could shift into. It was there all the time but I just wasn’t motivated to exert my willpower. When the complication raised it’s ugly head, I found that willpower quickly. Sometimes we can do better.

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Don’t get me wrong: I absolutely do NOT doubt the utility of a LCHF diet. And I’m glad those parents and kids are doing well. But this way of doing things is just not feasible for the average family with two parents working full-time. Maybe with a SAH parent who home schools…

I’m a single mother working 50 to 70 hours a week. I let my daughter eat a reasonably healthy diet like her peers and her A1c’s are in the 6’s. She is athletic, not a bit overweight, and does well in school. Does she flat-line the vast majority of the time? No. (Thank you growth hormones and menstrual cycle-related hormones.) Does she run low more than 5% of the time? No. I am more than happy with this. And she has absolutely no desire to change her diet. I choose my battles.

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With diabetes balance it critical. And that balance goes well beyond blood sugar. You are balancing a lot of important personal factors as well. It’s complicated. I understand. Just so you’re aware, Dr. Bernstein does not advocate a low carb high fat way of eating, especially for children. He’s believes in emphasizing a robust protein portion at the expense of the fat.

You’re right, a lot of the Type 1 Grit families have a stay at home parent. That is a luxury that can really make that lifestyle work. When I made my big changes in 2012, I was recently retired and had no good reason not to give diabetes everything it demanded. In the beginning it did seem to be a bottomless pit of neediness but I was surprised to find after many months that its list of demands did have an end. I also discovered that habit became a big ally as I sought to do more with my life than be a diabetes machine.

You’re doing a great job when faced with many competing important demands. Someone in the family has to work to provide good access to all that expensive diabetes care. By the way, I cannot even imagine the complexity of controlling blood glucose in another. I often find the social dimension of diabetes to be more perplexing to me than the metabolic science. I’m sure you have to thread many needles in this regard.

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Amen, amen, amen. Adolescents’ needs are not the same as adults’, and I don’t just mean nutritionally. “Normality” among their peers is vastly more important to them than long-term BG consequences. The aim is to keep their BGs in range, of course, but to do that parents have to play the proverbial 11-dimensional chess. Just telling a kid to refuse the pizza and ice cream and Chinese food and brownies she’s confronted with at every social event only means she’s going to eat 'em anyway and not tell you. Much better to arm them with what they need to manage that stuff in a controlled and moderated way than to try to put them in an LCHF straight-jacket that they’re just going to break out of anyway and get themselves into even deeper trouble.

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Dr. Bernstein’s viewpoint is extremely controversial and not approved by pediatric endocrinologists for treating children with diabetes. Dr. Bernstein is NOT a pediatric endo and has no qualifications to treat children whatsoever. Dr. Bernstein does not approve of the insulin pump! Considering the frequent basal and temporary basals necessary to manage children with growth hormone swings adults do not have, children’s extreme reaction to carbs and exercise, children’s need for carbohydrates in order to GROW, I consider a pump necessary until the child is grown. This doctor, while some adults may choose to follow him, has no business advising children. A child has a CDE nutritionist give the parent a diet to follow modified on the child’s eating habits to some extent, allowing for normal childhood treats so the child is not different from all the other children. Should a parent choose to follow Dr. Berstein, every three months the parent would see the endo, the endo would look at the weight and growth charts for the child, and most likely Bernstein’s pts would not match up to the normal growth charts. Thanks, and no thanks. This guy is a quack as far as children are concerned. No parent in their right mind would follow him. And the child would be miserable on his diet. So would my 19 year old daughter, although she could go low carb if she chose to.

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I totally agree!!!. If I were the parent of a T1 child I would rather they have an A1C in the 6’s, a healthy diet for a growing child and hopefully develop a sensible attitude to food. Better that than have an A1C in the 5’s and a restricted diet which at the very least will be difficult (?impossible?) to maintain through adolescence and just encourage rebellion. Everyone knows that elevated BG levels are dangerous over the long term - that does not mean that as far as A1C is concerned lower is always better. The law of diminishing returns sets in at some point, and there’s an opportunity cost in over-restricting the diet!

At the risk of inciting incoming (!!!) IMHO Bernstein and some of his followers are dangerous extremists.I regard them as the Daesh of Diabetes!

Joel

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I think they are missing the point which isn’t how many carbs you eat,it’s how balanced your carb and insulin are. I agree that lowering carb intake can be a useful tool and is very helpful in minimize the risk or perhaps the damage from experiments however it’s been my experience that I’ve been able to eat more than Bernstein allows (c. 150G of carb/ day, with occasional excursions of more than that…) and still have reasonably tight BG control, 4.9 (only once!)-5.1 A1C for going on 3 years now, since Enlites came out.

I dislike the “mustism” of Bernstein in particular and low carb advocates in general. This leads to “can’tism”,“I can’t eat this and I can’t eat that” and, of course, the lectures “you shouldn’t eat that, you should eat this…” whereas with any food that is challenging the answer is to practice more, not to give up. If one wants to make low-carb muffins with nut flour,you might improve that challenging process through practice and I think that any food can be approached as a challenge to be successfully conquered!

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This post hits the nail on the head, especially the part about “can’t-ism”. Dare I say it? I let my daughter eat Twinkies for heaven’s sake and her A1c’s are in the mid-6’s to high-5’s! I’m always gearing towards a healthier diet, but it just ain’t living without some Twinkies… We just know how to bolus for 'em!

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Well, I guess Twinkies are okay. I prefer donettes, actually, a lá John Belushi.

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Many participants at TuD today weren’t around for the previous iterations of the low carb debate. During the last large contentious arguments about the merits of low carb eating, especially the Bernstein variety, I was primarily a lurker. The intensity of those exchanges kept me on the sidelines but glued me to the ongoing discussion. I learned a lot during that conflict.

The argument that stuck with me was actually a compromise position that made a lot of sense to me. That argument stated that you didn’t have to adopt the Bernstein 30 gram daily limit, 6 for breakfast, 12 for lunch, and 12 for dinner, to reap some of the benefits that he espoused. They said, “take the ideas that are attractive to you and leave the rest.” The argument that low carbing was not an all or nothing proposition finally persuaded me to give it a try. I started my personal carb limits not at the Bernstein 30 grams but at the more reachable to me, 100 grams. That evolved naturally down to my current 50 gram per day limit. My limit is flexible, though.

What I did learn and believe to this day is that diabetes, all types, is a disease of carbohydrate intolerance. Each of us has a threshold that when pushed beyond we start to lose control. For some that threshold is low, for others it is higher. If you are physically very active every day, you can naturally ingest more carbs and not lose control. If you are more recently diagnosed and still have some significant remnants of pancreas function then you can eat a higher threshold of carbs. We are not all the same that way. This threshold variability, however, does not mean that this threshold doesn’t exist.

I get the skepticism that some express when exposed to the Bernstein devotees. The enthusiastic embrace of all things Bernstein borders on cultish. I will assure you, however, that the people who follow Bernstein, are not members of a cult. They are sane, rational, intelligent people that have chosen a different path of many here. They’ve made the deal with diabetes that each of us makes every day and they’re happy with the deal they’ve struck.

It’s a complicated discussion and I respect everyone’s position. We each make our own choices. Our bets are very serious because it’s our own health or the health of a loved one that hangs in the balance. And the vagaries of fate do not insure that we’ll have better outcomes. We accept that some people with great control will get complications and some with terrible control will never be burdened with a complication. Life is risky and not fair!

We should not feel threatened with the choices of fellow travelers on this path of diabetes. We should extend an empathic hand where we can because it’s good for those that need it as well as the helper. Peace.

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Bull’s eye.

Thanks, @David_dns. I’m getting to an age where I see some social trends repeating. Due to some denial of my advancing years, I have mistakenly assumed that others in my community have the same experience as me, forgetting the turnover that is natural in any group.

Some people avoid conflict at all cost. While I concede that it can get emotional and inflict wounds, if done right it can illuminate lessons. In that last low-carb conflict here on TuD I learned lessons that will last me a lifetime. I hope others can gain some helpful insights that will help them this time around. Until there’s a cure, we’ll have low carb debates from time to time here on TuD.

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Its good to have an opinion. It’s better to have an informed opinion. LCHF Ketogenic diets are perscribed for epelepsy kids It’s not the doom and gloom some are making of it
https://www.google.com.au/search?q=epelepsy+ketogenic&rlz=1CDGOYI_enAU594AU594&oq=epelepsy+ketogenic&aqs=chrome..69i57.23220j0j4&sourceid=chrome-mobile&ie=UTF-8&hl=en-US#hl=en-US&q=epilepsy+ketogenic

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@jack16 – You’re right about the epilepsy low carb protocol. It’s also ironic that low carb eating was the medical first line of defense for survival before insulin was discovered.

Lol and was normal the vast vast majority of human history and evolution. Yet all of a sudden it’s a radical idea.

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This about disbelief in epilepsy families is familiar

Some parents of children with epilepsy are skeptical of the ketogenic diet when they first hear about it. A diet that can control epilepsy and stop seizures without any medication? It almost sounds like a scam.

But the ketogenic diet is real and legitimate. It works very well in many people. The catch is that it’s extremely demanding and difficult to follow. In fact, it is so difficult to follow that most doctors recommend it only for people who haven’t been able to control their seizures with medicine.

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I was told The 1900 diabetic was about 30/20/50fat It doesn’t sound right to me and would need to be searched. But it would be a good place to start. You may not need to go down to 5/20/75

i had to give up, Twinkies. thank you Celiac for that.