I am posting here because my 10yr old just past her 1 year anniversary with T1.
We have done Bernstein's method from the start with MDI.
With the grain-free, gluten-free, low carb way of eating (which she loves, by the way....) her A1C has remained at 5.3 %. Very few lows and NO dangerous highs.
I fired the Endo very early on and hired, instead, an amazing Naturopath who agrees that diabetics should be low-carb. Also, we have a sympathetic GP who prescribes the meds.
I know many people have been led to believe that "good carbs" i.e. bread, pasta, potatoes, rice, etc. are necessary for good health. This is just a myth. My daughter's health and bloodwork are all excellent.
I just wanted you all to know that there IS a way to beat the crazy cycles of highs and lows.......it is the low carb way of eating.
I have never heard of this method, is there a book or something that explains it? What meds does the GP prescribe? Does your whole family eat this way? I am just wondering because this would be a very very different way of eating and I have two other children it would be a huge adjustment for. My daughter is gluten free so we are used to that. Her #'s are not the greates so I would be interested in finding out more about this, plus if you're child isn't eating many carbs I don't know how you stay away from lows. My girl can get low when there is not any fast acting insulin in her system if she hasn't eaten for a long period of time. Any info would be appreciated, thx!
We just did a trial period of a similar diet with our 10 year-old. Not the 30g carbs/day as recommended by Bernstein, but right around 50 per day. Good news is that he, like your child, really liked the diet. Bad news, he used just as much insulin on this diet as he did on the 120 carb per day diet. On a 120 carb/day diet he averages a 1u of insulin for 13 carbs. On a 50g/day diet, he averaged closer to 1u per 5 carbs! His body seemed to be really good at converting protein into glucose! His numbers were really good on the diet, but because he was using so much insulin, I decided to go back to the 120 carb/day diet. Why did we go back? Although I think the risk is low, the diet has not been tested on children and though I believe the risk is minimal, he gets almost as good of control at the 120g/day level. Since he is nearing the teenage years, I thought it would be important for him to be able to eat with friends. When he was on the Bernstein diet, it was almost impossible to correctly dose for a higher carb meal.
However, because your daughter likely has some insulin production left, I believe the Bernstein diet will probably preserve her current functioning and prevent complete burnout--that's what Bernstein believe too. If your daughter has some of her own insulin production left (my son doesn't), she could likely tolerate the rare occasion of a higher carb meal. If you find her insulin to carb ratio going up over time, then this hypothesis may be wrong, but you could have her c-peptide levels monitored yearly as an indicator.
Don't get me wrong, I want my son to go back on this diet after he finishes growing. My son is already the average height of a 13 year-old. It wasn't too bad getting him up to 2000 calories a day on the modified Bernstein diet, but when he is nearing 6 feet, still growing, and requiring more than 3000 calories a day--well, I thought the Bernstein diet would be hard for him to manage then. Also, I couldn't find a study to say that low carb dieting affected growth rates. The only opinions I found against having a child on a low carb diet were unfounded opinions.
Just curious, does she wear a CGM? What is her average bg? And when you say very few lies, how often/ how low? I read. The book and struggled to think of my child having to eat nothing but greens, as I have issues with him eating the portions I give him now!
If you are interested in learning more about it, I suggest reading Dr. Bernstein's book, "Dr. Bernstein's Diabetes Solution" by Dr. Richard K. Bernstein. You can get a used copy on Amazon. The book is very detailed, but more than answers all of your questions.
I am also diabetic, type2. We have another son who tested borderline type2, so this way of eating fits our family. Also, it is not that we don't eat carbs....its just that the carbs we eat are in the form that I believe humans were designed to eat.....low glycemic, nutrient-dense vegetables...i.e. spinach,kale,broccoli, cucumbers, celery, avocado, asparagus, to name a few. And we eat them at every meal, including breakfast. My kids favorite breakfast is a huge frittata with meat, veggies and cheese.
As to the lows......you will find vastly different information in Dr. Bernstein's book about how long insulin is in their system. We learned in the hospital that it is 3hours. Not true....it is actually more like 5-6! Dr. Bernstein teaches you how to accurately give dosages for all kinds of insulin, based on body weight, etc.
You will learn about "the law of small numbers", which basically means, with lower doses of insulin in their system, the lower the chances of experiencing dangerous lows. I could go on an on.....you have nothing to lose by reading the book. You can also go to Dr. Bernstein's site...diabetes-book.com for more info.
Your son's situation is intriguing....you could ask Dr. Bernstein...he has a free webinare once a month....I have gotten many questions answered there. One caveat, he asks that you only communicate with him after you have read the entire book. How long did you try the 50g/day diet? I assume there would be an adjustment period to get through.
Also, a very low carb ketogenic diet has indeed been tested on children.....they use this diet for pediatric epilepsy with much success. Many of the kids that are put on this diet are able to go off of seizure medication. Dr. Bernstein goes so far as to say that a high carb diet in diabetic children will stunt growth, not the other way around. Also, I'd think that the low carb plan would work well if it is calories you are concerned about. This way of eating is high in calories.
I have read about a lot of diabetic athletes that swear by this way of eating for sustained energy. Search for Dr. Peter Attia, and also "The Art and Science of Low Carbohydrate Living by Dr. Stephen Phinney and Jeff Volek.
My daughter does MDI with Levemir for basal and Humulog for mealtime bolus. We try to keep her between 70 and 90 at all times.
We have chosen to be "unattached" from devices. She does MDI. There is no need for a CGM when you are low carbing....you just test with the meter. Her lows usually result from overshooting with insulin....but since her carb intake is so low, the overshoot is never very large...we are talking about boluses of .25-.5 units on average. A typical low is between 55-65...also brought on by heavy exercise. Which we ALWAYS correct with pure glucose, never food. We know exactly how much a certain piece of candy, i.e. smarties will bring her up, so we are able to bring her up to her target exactly each time.
This way of eating is so far from "nothing but greens" I don't really know how to respond to this. We eat delicious food! I just made some scones for the kids made with almond flour, coconut flour, butter, cream cheese, eggs, vanilla, and flavored Splenda syrup. They are being gobbled up! Yes, we must learn to cook in a different way.....but it is so worth it! Have you ever tried "Kale Chips"? It's easy....get a bunch of Kale, chop it up, and dowse it in olive oil and salt. Put it on a tray in your oven at 400 degrees--convection if you have it. Watch them so they don't burn. Take them out when they are crisp.....my kids gobble this up too!
thanks so great to hear!! I do wish I could get kennedy earting lower carb, she has celiac so she's of course gluten free, but she LOVES SWEETS, and we really see a difference. we eat so healthy at home and her bs are great over our family dinners and breakfasts, but when she's away things definitely go crazy.
i'm trying to not be too controlling now and let her make more decisions on her own. and her ac1 is 7.2 to 7.4 great her endo says for her age, but 5.2 WOW!!!
does your daughter mind not eating sweets?
We'd be much healthier if my husband wasn't constantly bringing home ice cream, candy bars, milk shakes and fast food.
he just doesn't give a crap
I read bernstein's book and I am a believer, i dont believe in limiting fruits at all, but otherwise it's sound. There is no nutritional downside to this. Is your husband supportive? he must be a good healthy influence!
as long as you are not ketotic ( adkins) there is no concerning effect on growth, but be sure to check his linear growth every three months ( disclosure, I am a pediatrician)
wow! that's amazing! you are probably extending her honeymoon phase! kennedy's lasted about a year and a half! she must still have some insulin production
I have heard from others about "stunted growth" being associated with a ketogenic diet. Since you are a pediatrician, you should be able to provide us with some scientific evidence. Where can we find well designed studies that show this?? I am very curious about this because Dr. Bernstein maintains that the opposite is true....that abnormal blood sugars (higher than normal) actually stunt growth.
At the end of this post I will give you a GREAT recipe for the ones who love sweets! I love the name....Fat Bombs! They taste like fudge, except they are actually GOOD FOR YOU!
We do eat some sweets.....just the ones we make ourselves. We use Stevia and Splenda for sweetening/baking. We only use coconut flour and almond flour for baking.....but even these need to be limited. So my "sweet" fallback is usually the fat bombs. You can also make your own ice-cream custard style with lots of eggs and heavy cream......yum!
As for your husband....that is too bad! I know my husband did not "get it" at first...but, after he went low carb and lost his BEER GUT, he began to see things differently! He still eats more refined stuff than we do...but he is very supportive of my efforts in the kitchen.
With regard to fruits, I actually checked nutritional charts.....there is so much nutritional cross-over between fruits and veggies, that you really do not need to eat fruit. I have had no fruit in over a year....my blood sugar would go through the roof if I did. I used to LOVE fruit....but I really don't miss it...and knowing that my bloodsugar is normal is worth not having it.
Here are the Fat Bombs:
¼ cup cocoa powder 6 Tablespoons canned coconut milk or heavy whipping cream
3 Tablespoons peanut butter, or any nut butter you like
1 Tablespoon finely chopped nuts, I used pecans here in Louisiana
Stevia to taste, I used 22 drops of NuNaturals liquid vanilla stevia** see note above
4 Tablespoons Virgin Coconut Oil
2 onces chopped unsweetened baking chocolate, melted with the coconut oil
½ cup coconut flakes, toasted under a broiler while watching carefully, about 30 seconds
a wire whisk or hand beater
cupcake papers
Combine cocoa powder, coconut milk, and stevia in a small saucepan and stir. The cocoa will not mix in. Heat over medium heat, stirring constantly with a rubber spatula, until smooth. Remove from heat and add the nut butter. Whisk or beat on low speed together until combined. Whisk in coconut oil/chocolate mixture. Stir in nuts, and most of the coconut flakes. Reserve some for topping. Spoon into 5 cupcake papers evenly and top with remaining coconut. Arrange on a plate and place in freezer until hardened. Then, transfer to refrigerator. Eat straight from refrigerator, they will melt at room temperature. Makes 5; 3g effective carbs each, and 18.8g good-for-you fat if you use peanut butter and pecans, slightly less if you sub walnuts for pecans. If you use cashew butter & pecans/walnuts, 4.25 ECC/4.15 ECC respectively.
the fact is that they both do... ketogenic diet is for children who are desperately riddled with seizures, it is a last resort, ketosis is not good for the brain, but this situation with kids with terrible seizure disorders you are picking the least of two evils so to speak, high blood sugars also stunt your growth, so good control is important through puberty as well.
funny, in kennedy my daughter with celiac the opposite is true, gluten stunted her growth for much of her life, that is part of how celiac presents... now that she is gluten free ( and diabetes in control, they presented at the same time) her growth is normal. there is no reason to expect not eating gluten would stunt growth in a normal kid. But there is no reason that children ( even diabetic ones) should not eat FRUIT. I think that is the difference.
Thanks Natalie! I was using the wrong search terms when I first looked for the effects of a low carb diet on growth, but using "ketotic" I was able to easily find research. Currently our son is eating 120-160 carbs a day, but I will check for keytones every once in a while first thing in the morning to make sure they are not high. For reference, I did find research supporting just what you stated--that ketones are negatively correlating with growth velocity. Meaning the more ketotic a child becomes, the slower they grow.
If anyone wants the full article, message me and I will email it to you.
Growth dependence on insulin-like growth factor-1 during the ketogenic diet. Spulber G, Spulber S, Hagenäs L, Amark P, Dahlin M.
Source
Department of Neuropediatrics, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, Sweden. gabriela.spulber@ki.se
Abstract
PURPOSE:
To examine the influence of the ketogenic diet (KD) on linear growth and insulin-like growth factor I (IGF-I) levels in children with pharmacotherapy-resistant epilepsy.
METHODS:
A prospective study was designed to evaluate growth, serum IGF-I levels, blood beta-hydroxybutyric acid (beta-OHB), and seizure frequency before and during KD in 22 children (median age 5.5 years). Growth was assessed by measurements of weight, height, body mass index (BMI), and height velocity. Standard deviation scores (SDS) were calculated for all measured parameters as well as for serum IGF-I to eliminate the influence of age- and sex-related differences among patients.
RESULTS:
Fourteen of the 22 patients responded to the KD. Weight, height, BMI, and height velocity decreased significantly during the KD. We found that the KD had profound influence on growth and IGF-I levels. No correlation was found between seizure response and growth alterations. Height velocity correlated negatively with beta-OHB during the KD. The slope of the regression of height velocity against IGF-I decreased significantly during the KD.
CONCLUSIONS:
Height velocity was most affected in those with pronounced ketosis, which implies that, in clinical practice, the level of ketosis should be related to outcomes in seizure response and growth. Our data indicate that growth disturbances and the decreased sensitivity of growth to similar IGF-I levels during KD are independent of seizure reduction. The metabolic status induced by KD may be the mechanism underlying both alterations of linear growth and seizure reduction.
Our son's most recent blood work showed that he has a IgA deficiency. Though he was negative in the past for celiac, our endo said that she will request a different type of test ("Igt-based"). Because our endo said she wasn't worried about it (all other lab work was "great"), I've been choosing not to research celiac or put him on a gluten free diet until we do lab work again in March. Question: were you in my situation, would you put your daughter on a gluten free diet now or wait until the next lab work came back?
Nope, definitely wait, because to cinch diagnosis you will have to have upper gi then biopsy, and if you do diet, the biopsy may revert back to normal woithin a three month time. If she is really sick, then push for the celiac antibody panel to be done sooner, so you can get the biopsy sooner. In our case she was really getting sick by the time her antibody panel came back positive, and we did have to wait another month for the biopsy, but you want to know for sure, because a lifetime of no gluten is not easy to pull off.
You will see lots of this consumer trend of people putting their kids on gluten free diets, because it is somewhat of a fad, but real celiac is a permanent diet change that must be strictly enforced, not just a cool thing to buy gluten free pizza at dominoes here and there.
