Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Hi ph's ketones get " HI " at 5-6 pm,so I have no idea what they are like at bed time,but they are sure above 6 mmol/l.I have also noticed ph is doing much better with high ketones,he is never symptomatic and like becomes more active/hyper when his ketones go high.At the moment ph is sick with sinus infection and even now his morning ketones are pretty high and evening ketones are around 5 mmol/l.We do not have problem with going to bed.ph is able to fall asleep and sleep through the night with high ketones,he also never mind to eat or drink no mater how high his ketones are.He was very fussy before the diet and refused alot of foods,but now he eats almost everything I cook.ph also has afternoon naps lasting 2-2,5 hours.So I do not know if high ketones are causing problems or something else.Everybody react differently.For ph high ketones mean " good " . ph only eats 3 meals and one small ( 30% ) snack at bed time(9 p.m),his breakfast is at 9 a.m.ph is 2 years and almost 3 months,he is 14 kilos( not sure how much it is in lbs) and 87 cm tall.He gets 979 Kcalories,16.34 protein,10.44 carbs,96.52 fat As for seizure control,we do not have complete control,but we have good seizure reduction.Prior the diet ph averaged 50+( over 100 on the bad day) myoclonic abcences a day,3-5 CPs a month and at least 1 t/c a month.Since starting the diet myoclonic abcences went down to 0-5 ( 10 on the bad day) a day,we have had 2 CP since starting the diet( 2 months ago) and a few t/cs.So I can definitely say the diet is working even though we do not have complete control.The good sign is since ph became sick 5 days ago he has not had t/c seizure with fever,only 2 or 3 jerks.Previosly he would almost always go into status epilepticus with low grade fever ( 38 C )as fevers and even hot enfiroment are big triggers for him Hopefuly you will be able to find a right solution to bring s seizures under control.It seems like you are very close,as they only happen in morning hours. Natasha,mom to 2 years old ph,suspected SMEI/Dravet's syndrome > > > > > Hi - > > > > > I check blood ketones. His ketones are > > > > consistently > > > > > high at bedtime and he is now waking > > w/mod. > > > > ketones > > > > > " MOST " days. Granted, I only spot check. > > > > Mornings > > > > > following seizures ketones are down and > > > > glucose is up > > > > > but figured they were lower as a natural > > > > response to > > > > > the seizure. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > > removed] > > > > > > > > > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
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