Re:Question for Cammie

[Guest guest]

,

The standard criteria for weaning the diet has been 2 years seizure

free and med free. If a child is 2 yrs seizure free and still on

meds but getting tired of the diet, some docs will suggest weaning

the diet to see if the meds will control seizures alone. When we

started the diet, we expected to be on it for 2 full years (assuming

we were successful) and then begin to wean. That would mean a total

of about 2 1/2 years before returning to a normal diet. The 2 years

was chosen as an arbitrary time frame because if a child is seizure

free on meds alone for 2 years, docs sometimes start thinking about

weaning to see if the meds are no longer needed (assuming there is no

focal point for the seizures).

The diet worked for from the very beginning. It still amazes me

to think about it. The seizures took our daughter away from us and

the diet gave her back. Truly, a different girl left the hospital 3

days after starting the diet. She had a normal EEG 8 weeks after

that and has had 2 more since then. Her EEG prior to the diet was

terrible. most likely has MAE (Doose syndrome). The diet seems

to be one of the most effective treatments for MAE. Not a lot of

hard evidence on this, but it seems that once MAE kids seizures are

stopped--really stopped--they don't return. Our neuro explains it

like their brains somehow " forget " how to have seizures after not

having them for what can be a relatively short time compared to other

epilepsy syndromes.

Our team takes a very individual approach to the diet, depending on

the particular child's situation. We were on strict keto for about 6

months. Then we moved slowly to an Atkins type diet. Since July

we've added more carbs (slowly). There have been many cases of kids

who have done well from the start of the diet, have been able to drop

all meds, and have at least 2 normal EEGs who have weaned earlier

than 2 years and remained seizure free. meets these criteria

and our team offered this as an option to us. We decided to go for

it. Technically, we were on the diet for 6 months and have been

moving back toward a normal diet since then (very slowly). If all

continues to go well, she will be on a normal diet by Christmas

time. We have been an " experiment " of sorts, along with a few of

their other patients.

There have been kids who have tried to wean after 2 years and their

seizures returned. Charlie Abrahams was one of them. It was either

his second or third try to wean that worked. I can't remember how

long he was actually on the diet. So, like everything else epilepsy

related, it's seems to be an individual thing.

Cammie

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