We are brazilian, living in Brazil. My daughter, Isabel, 21y. o., born in 1996, has syndrome of deficiency of Glut1. She was diagnosed around her first year of life. At that time her baby bottle, her begining diet meal, was 50ml water plus 50ml oil plus vitamin. Since then, which means, for 20 years, she is under this diet. For almost 18 years under 4:1 proportion. At this right moment 3:1. The only problem she had since started the diet were kidney stones in 2002. Nothing else. Grateful to the diet she doesn’t take any kind of medicine to avoid seizures. Her health is perfect, no colesterol at all. We are at your will for any issues related to her health.
Long-term use of the ketogenic diet in children increases the risk of slowed or stunted growth, bone fractures, and kidney stones. The diet reduces levels of insulin-like growth factor 1, which is important for childhood growth. Like many anticonvulsant drugs, the ketogenic diet has an adverse effect on bone health. Many factors may be involved such as acidosis and suppressed growth hormone. About one in 20 children on the ketogenic diet develop kidney stones (compared with one in several thousand for the general population). A class of anticonvulsants known as carbonic anhydrase inhibitors (topiramate, zonisamide) are known to increase the risk of kidney stones, but the combination of these anticonvulsants and the ketogenic diet does not appear to elevate the risk above that of the diet alone. The stones are treatable and do not justify discontinuation of the diet. Johns Hopkins Hospital now gives oral potassium citrate supplements to all ketogenic diet patients, resulting in one-seventh of the incidence of kidney stones. However, this empiric usage has not been tested in a prospective controlled trial. Kidney stone formation (nephrolithiasis) is associated with the diet for four reasons:
There are so many tricks, shortcuts, and gimmicks out there on achieving optimal ketosis – I’d suggest you don’t bother with any of that. Optimal ketosis can be accomplished through dietary nutrition alone (aka just eating food). You shouldn’t need a magic pill to do it. Just stay strict, remain vigilant, and be focused on recording what you eat (to make sure your carb and protein intake are correct).
A survey in 2005 of 88 paediatric neurologists in the US found that 36% regularly prescribed the diet after three or more drugs had failed, 24% occasionally prescribed the diet as a last resort, 24% had only prescribed the diet in a few rare cases, and 16% had never prescribed the diet. Several possible explanations exist for this gap between evidence and clinical practice. One major factor may be the lack of adequately trained dietitians, who are needed to administer a ketogenic diet programme.
Advocates for the diet recommend that it be seriously considered after two medications have failed, as the chance of other drugs succeeding is only 10%. The diet can be considered earlier for some epilepsy and genetic syndromes where it has shown particular usefulness. These include Dravet syndrome, infantile spasms, myoclonic-astatic epilepsy, and tuberous sclerosis complex.
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