changes - how often

[Guest guest]

My son, Panu, started ketodiet week ago. He started to fast last Sunday

afternoon and was in ketosis on Tuesday morning. During the first two days he

was seizure-free (normally 30-50 drops per day) but on the third day when he got

his first meal seizures came back. Beforehand I was afraid of the fasting period

but he took that period very calmly. On Thursday he got the full tree meals and

was very active in the evening - he was almost the same boy as he was before

epilepsy.

But on Friday he was very very tired and on Saturday he refused to drink

anything and was almost all the time asleep. Blood sugar was okay (3.4) but

ketones in the urine were very high (>16). Actually ketones were very high since

Wednesday. According what we have read about ketogenic diet we thought that the

ketones was too high. Our dietitian told us during the hospital period that if

the ketosis is too hight we should add 2 g cardohydrates and decrease 1 g fat.

In fact ratio lowered from 3:1 to 2.6:1 (1500 kcal per day; 12,7 g prot, 5,6 g

cards, 47,7 g fat per meal, tree meals per day). Panu picked up and started to

drink again. The ketones has been after the ratio change still 16 or almost 16.

He is still tired and I think that his kalories might be too low - he has lost

2,5 kg in one week. Now his weight is 50,6 kg and his ideal weight is 48 kg.

Even his mobility is rather low (he is retarded) he goes on all fours. He used

to walk with help before epilepsy and last Thursday he walked almost like good

old days. But how soon we can make another change - we just changed the ratio.

Somebody said that she hates seizures - so do I and in addition I hate epilepsy

medicines. One of them (Lamictal) cause s Syndrome to Panu and his

face, hands. feet, mucous of eyes, nouse, lips and mouth literally burned but he

survived. I just wish that the diet will help him and we get ride of all

medicines.

Jaana