We finally got an email from the hospital. Kalle is no.1 on the waiting list for the ketogenic diet. Ketogenic what?...you might ask. Well...it's a treatment for epilepsy, but there are no meds involved. Usually the body burns carbohydrates (sugars). We eat bread, pasta, fruit, veggies etc... That's where the body gets its energy from. If you're on the ketogenic diet you eat very few carbohydrates and lots of fat. Your body will burn the fat instead of the carbohydrates. Because of that the body will produce 'ketones'. The patient will be 'in ketosis'. That ketosis somehow helps the epilepsy.
Of course, it doesn't help every patient, but most of the times it helps at least reducing the seizures. And the patient will be more alert. By the way....more fat doesn't mean more calories. First they (= doctors) will run some tests, for example how many calories Kalle needs. He is much too heavy (he gained 1 kg / month since he's on Depakine, another anti-convulsive drug...he's now 11,5 kg, 66cm). So the start of the diet will also mean that he will loose some weight. We hope that his ability to use his arms and legs, lift his head etc. will improve by that.
We refused to let the doctors treat Kalle with another heavy med, like ACTH. There are medical studies that prove the effectiveness of the ketogenic diet and / or compare the different types of treatment. ACTH would have meant two injections / day for weeks or months.
No. 1 on the waiting list means waiting another 2-3 weeks. Kalle has to be in the hospital for a 5-7 days because his blood sugar and lots of other things have to be checked carefully. If he his 'in ketosis' we can take him home and continue the diet. In Kalle's case it will mean using other nutrition that goes in the same bottle he has now :-)
To be continued....