Ketogenic Diet
The ketogenic diet is a special diet used to treat seizures. It was initially studied in the 1920's as a treatment option for those with intractable epilepsy. Since then, medications have replaced the diet, but there is now a resurgence of interest in the Ketogenic diet. The diet is high in fat, and low in carbohydrate and protein, which results in ketosis. In addition, fluids are limited, which helps contribute to the diet's success. This ketotic state exerts an anti-epileptic effect, though its precise mechanism of action is not completely understood.
The diet is high in fat, and low in carbohydrate and protein, which results in ketosis. In addition, fluids are limited, which helps contribute to the diet's success. This ketotic state exerts an anti-epileptic effect, though its precise mechanism of action is not completely understood.
It appear to be effective for multiple types of seizures. However, we have found it to be most effective for myoclonic seizures and "minor motor" seizures. The diet also seems to be helpful for other type of seizures, such as tonic-clonic seizures and complex partial seizures.
We recommend that you consult your physician or neurologist about the appropriateness of the ketogenic diet for your childs seizure disorder. You should also contact other keto providers and families who have been on the diet. Usually the ketogenic diet is used as a secondary method of treatment, that is, when conventional anti-seizure medications do not seem to adequately control seizures. Also, if the adverse effects of the anti-seizure medications are too great, the diet can also be considered (so that medications can be reduced).
Ask your childs neurologist for a referral to a, preferably close to home, site that will evaluate your child for appropriateness to start the ketogenic diet. Please note that as there are a limited number of institutions that have an active keto team, your child may have to wait a month or more to be admitted. You can find a partial list of centers/programs that are offering the ketogenic diet on our pages.
Uncomplicated hospital admissions scheduled to initiate the ketogenic diet are typically 4-5 days in duration (Monday-Friday).2. How long does my child stay on the diet? If the diet proves to be a worthwile form of therapy usually, the diet is followed for 2 years and weaned in the 3rd year, similiar to what might be tried with an antiepeleptic drug (AED).
The diets effectiveness is seen in varying amounts of time among individuals. It can be immediate, while the diet is being initiated in the hospital, or it may take several months. Remember, seizures are different for all children, some have several daily and other only once every 6 months.
The ketogenic diet can be planned for children who cannot tolerate milk or milk products; this is true for either oral or gastrostomy fed keto kids. Heavy whip cream does not need to be a component of the diet, it can be replaced with other food sources of carbohydrate, fat and protein and produce the same degree of ketosis. For children fed by a gastrostomy, nasogastric or jejunal feeding tube, RCF (Ross Carbohydrate Free) is recommended. The protein in dairy products, which is the allergen, is replaced by a soy protein in RCF, thus there is no allergic potential, as long as the child is not allergic
Most of us are used to celebrating special occasions with friends, family, fun and yes, food. These days can still be special, but they do not need to be food centered for the ketogenic kids. For instance, at Halloween, trick or treat candy can be traded in for nickles to buy a new toy or rent a video. Birthday candles can be stuck into Play Dough and placed on a gift or the table. The rest of the family need not suffer through the holidays, however, being sensitive to a keto kids unique diet therapy is warranted.
Children do seem to respond differently to the different stages of the ketogenic diet. Alot of this depends on what the childs baseline awake state is. Most often, during the fasting your child may feel sleepy, lethargic, and cranky. Then as the diet begins, lethargy may continue as well as nausea and vomiting, this may be due to excessive ketosis, or it the side effects of the change in metabolism from using glucose as a primary energy source to using fats instead. It may be also related to a change in drug levels. In time, children should return to their normal, or close to normal activity level; some keto kids even get more energetic with time? One common, side effects of a high fat diet for everyone is a slower gastric emptying time, thus even though the portions may look smaller, the food will stay in the stomach longer and give a longer feeling of satiety.
Cheating, or mistakes happen for various reasons, it can be purposeful by the child, or an incorrect amount of food weighed out and realized retrospectively. Trying to mimimize this is important, but being prepared for what might likely occurr at least once is equally important. Depending on how big the extra amount of food is/was depends on the treatment. Often times, it is safe just to recognize the mistake and pick up with the regular ketogenic meal plan at the next meal.
Well, that depends on the individual circumstances. In most patients anti-seizure medications are reduced. If they are on polytherapy, we usually try to eliminate some of the medications, perhaps maintaining just one medication. If they start the diet while on just one medication, we may try to reduce the dosage. If the patient is on a barbiturate, we do routinely decrease the dose when they go on the diet, since the diet seems to raise the barbiturate levels.
If your child remains seizure-free for 2 years, most neurologist would recommend switching back to a normal diet. This "wean" off the ketogenic diet is analogous to weaning anti-seizure medication after a seizure-free interval. The success rates of the ability of children to remain seizure-free off the diet after a successful treatment (with the diet) is not well studied.
In general, the diet does not seem to be as effective in adults. Most studies have been restricted to children and a few adolescents. In these studies, people have pointed out that the diet does not seem to work as well in older children, and seems to work best in children aged 1-10 years. The reason is not clear, but some have felt that older adolescents and adults may not make or use ketones quite so well. There are currently no published adult studies.
So far, the only condition that the diet seems to be effective is epilepsy. It also seems to useful for treating seizures in a rare metabolic condition that begins in infancy (such as glucose transport protein defects). In this condition inadequate amounts of glucose (sugar) gets transported to the brain. There is very little information on the use of the diet in other conditions, such as multiple sclerosis, diabetes, obesity, etc.
The use of the ketogenic diet in animals is as yet undefined. Experimental models using rats have been developed, but the efficacy and side effects of the diet in other animals is not known. We would recommend that people consult with their Veterinarian about the ketogenic diet in their pets.
For urine collection, I just put cotton balls in their diapers, for females it is easier because you can tuck the cotton balls in the labia, for males they always seem to "miss." All you need for a Dia-stick is one big drop to measure urine ketones.
Its a great age to start the diet! In our experience we have had no problems at all. Out of our 15 patients on the diet the youngest was started at 11 months and the oldest at 12 years. The only thing we do is during the fast and build up to full strength kcal's is check blood sugars regularly and treat if they fall below 30 (with 10 gm's OJ) and depending on symptoms treat further. Once on FS kcals, blood sugars are not a problem (they range from 45-70 inmost kids).We use a One-Touch for checking at the bed side and send kids home with them for emergency use only, its much cheaper to give them a glucose meter than send them to an ER for a blood sugar check. Let us know if we can assist further,
Yes this diet is very possible for a GTT kiddo, despite the allergies. You CAN use the RCF, since it does not contain any dairy products. You should also use very good vitamin/mineral supplementation.
We use the Dia-Sticks, they only measure urine CHO and ketones. So far insurance coverage has not been an issue. Patients check every void in-house and then ~2 time a day initially after D/C and then maybe once a week depending on seizure control. Our largest reading is 4+ on the dip stick for ketones. What we aim for is moderate to large ketones in the a.m. and large ketones in the p.m. Remember, that keto-stix only measure acetoacetate and not betahydroxybuterate, therefore measuring the efficacy of the diet by the urine ketone reading alone is not complete. Very large ketones all the time can be a sign of very strong acidosis, with the most common side effect and the worst to deal with in terms of eating and drinking a ketogenic diet is nausea and vomiting which generally makes everything worse.
Your limited success may only be because your patients have not been on the diet long enough. The literature includes remarkable response to the diet after 10 weeks on it (with no response prior to the 10 wk mark). Also, be sure the diet is being calculated correctly, that medication CHO content is being accounted for, that scales are accurate (we use a top loading digital gram scale, plastic model for <$100.00) and that the kitchen at home is keto-kid proofed--even lock up the dog food and garbage.kind of like working with Prader Willi kids sometimes. Also, if your kids are only using they exchanges for the ketogenic diet, that may not be accurate enough especially if a lot of cheese, sugar cured bacon, and regular mayonnaise. Have your RD go through the calculations with a fine tooth comb.
We have found that the diet is very nutritionally inadequate, for vitamins and minerals and Polyvisol and Ca is not adequate supplementation...did you know that Rugby's Ca is CHO containing!!!? We use Bugs Bunny Complete alternatively with an adult complete MVI to get all the trace minerals. 500 mg per day of Ca does not meet the RDA for most kids (as recommended by "The Book") they need more. Another big source of CHO is in the constipation meds, so be careful with those also.
The University of Wisconsin Drug Hot Line identified two fluoride supplements without carbohydrate: Fluoritab (drops) manufactured by Fluoritab Corp. and Karidium (drops) by Lorvic Corp. I am writing a protocol for hospital nurses who will care for 2 1/2 year old starting on diet with a fast and 1/3 progression of diet for the next 3 days. "The Book" states to give 5% dextrose IV if blood glucose goes below 25. How much dextrose is given? Is 100 cc reasonable with a recheck of blood glucose in 10 minutes? If the child will receive fluids via G- tube, is an IV line necessary only as a precaution for urgent hypoglycemia Rx? I'm not sure the MD will want this child on an IV.
Most toddlers on the ketogenic diet eat similar finger foods as other toddlers, except just smaller portions. It seems to have more to do with meal preparation. Thus, chicken strips or veggie pieces dipped in seasoned mayonnaise dip, chunks of banana or melon dipped in whipped cream, Ritz Bitz with butter and peanutbutter on top. I have found parents much better at coming up with suggestions than dietitians!
We use poly-vi-sol in the recommended dose. Are others using this? more? less? I can not be sure that the needs for B vitamins are decreased with a low CHO diet, just as I can not be sure that they are increased with a high CHO diet. But the RDA's are a safe and adequate range and where we keep our kids at. Also, the B's are water soluble, thus no real concern with overdoses. We use a low CHO children's MVI and an adult complete MVI to meet needs (remember, Polyvisol is an infant vitamin supplement for a normal infant diet; there are no minerals in Polyvisol).
We add 750-1200 mg Ca per day to meet Ca needs, and we use M.O.M. to help with constipation and meeting Mg needs. Specifically, we use Sugarfree Bugs Bunny Complete (100mg CHO), Nature Made Century Vite (<50 mg CHO), Phillips MOM, and a local drug store brand of Oyster Shell Calcium.
There are several retail children's mulitvites with minerals. We use Sugarfree Bugs Bunny Complete (100mg CHO per tab), also good is Sugarfree Flintstones with the same amount of CHO. We use a children's MVI + minerals in combination with an adult complete MVI + minerals (trace and ultra trace are included).
To help with low ketones in the a.m., my first question would be, how high do they get the rest of the day? If you have large/4+ ketones after lunch and moderate/3+ in the am that is probably fine. To get the mornings dips higher, try a later dinner or giving 4 meals/day instead of 3.
To become a "ketocenter" you probably have to call Johns Hopkins University. At Lucile Salter Packard Children's Hospital at Stanford, we have been using the traditional ketodiet since January 1995 and have currently over 40 patients on the diet. We are not a certified Ketocenter and have no plans to become one.
For your dietitian(s) they will likely need the following for training:
1. Basic training in Pediatrics and time to do some research.
2. 20 hours per week for a single admission
3. 4-5 hours a week to manage multiple outpatients
4. Access to the email system to call out for help.
Yes, kidney stones have been reported on the diet. We screen for kidney stone formation by looking for RBC's by a UA. If one develops, slight liberalization of fluids seems to correct the problem. Gallstones leading to persistent vomitting has been reported rarely on the diet.
We keep the supplements of vitamins, minerals and trace elements at the Recommended Daily Allowance (RDA).
Our kids can become quite acidotic at first, with serum CO2 occasionally <10. However, we are now fasting them minimally in the initiation phase of the diet and do not see those low numbers anylonger. While on the diet we are looking for ~3 to 4 wet diapers per day, specific gravity of ~1.025. However, there are individual variations depending on the level of ketosis.