Re: Diet Initiation Reaction

[Guest guest]

My daughter , age 5, just completed the diet initiation phase. I

thought I was prepared for what would happen....boy was I surprised. I just

wanted

to get some feedback from the list " experts " to see if 's reaction is

common? I've always read that most people see some seizure control during this

phase?

went in the hospital having anywhere from 30 to 100 absence seizures

per day. During the initiation phase she was having anywhere from 300 to 400 a

day which was confirmed by the video EEG. I think several things impacted

this including: day one of admission, she was sedated for an MRI; 2nd day she

wasn't allowed to drink the 2/3's eggnog shakes due to a PET scan that

afternoon. She vomited 4 times that second day and was extremely lethargic.

Her

blood sugar levels dropped to the mid 30's. They ended up giving her 1/2 of a

popsicle which seemed to help. They lowered her ratio from 4:1 to 3.5 to 1.

Her second night in the hospital, she had her first nonconvulsive status

seizure, she was given Ativan to bring her out. She has had absence seizures

for

almost 4 years and the longest one she has ever had has been less than 10

seconds

with most lasting less than 5 seconds. They lowered her ratio again to 3 to

1. She seems to be maintaining large ketones at this ratio and I have been

pleasantly surprised at her reaction to the food. We haven't had any problems

with her not eating what we fix for her.

has always been very sensitive to new situations which seem to bring

on more seizures. I think her reaction was a combination of the low blood

sugar, the two sedations (MRI and PET scan), and anxiety. I almost forgot, she

started getting a cold the third day of the initiation phase which still hasn't

gone away. Has anyone else experienced this?????

Since we have been home, I have noticed an improvement but still not back to

where we were before we started the diet.

Any thoughts would be appreciated.

Thanks so much,

Beth, Mom of age 5

[Guest guest]

Hi Beth,

What did they use in the PET scan? Any sort of glucose solution? I guess not

if her ketones have remained high, but just wondered. Sedation can

definitely eave some seizure fallout, some kids actually respond well

seizure wise, for some, the opp can happen.

As she hadn't really eaten on the 2nd day, I am not surprised her ketones

were so high, this is common, but they usually level out once the 'normal'

keto meals are eaten, in the first week or two. So maybe it may have been a

bit soon to lower the ratio? Or had she been eating normally and still with

very high ketones?

Is she on meds? Metabolism change from switching to the diet will mean the

meds effects are a lot stronger, and toxicity can happen very quickly.

Whatever is going on, don't be discouraged in this early stage - it can take

quite a while to see positive results, and some seizure types respond

quicker than others.

definitely got worst on his first day, and he had none of the factors

going on that Beth has had. But by day 5, he was doing great. It wasn't till

the next week that in his case the meds starting causing problems, meaning

we had to do some hefty reductions to get daytime control back again.

Hill

> went in the hospital having anywhere from 30 to 100 absence

seizures

> per day. During the initiation phase she was having anywhere from 300 to

400 a

> day which was confirmed by the video EEG. I think several things impacted

> this including: day one of admission, she was sedated for an MRI; 2nd

day she

> wasn't allowed to drink the 2/3's eggnog shakes due to a PET scan that

> afternoon. She vomited 4 times that second day and was extremely

lethargic. Her

> blood sugar levels dropped to the mid 30's. They ended up giving her 1/2

of a

> popsicle which seemed to help. They lowered her ratio from 4:1 to 3.5 to

1.

> Her second night in the hospital, she had her first nonconvulsive status

> seizure, she was given Ativan to bring her out. She has had absence

seizures for

> almost 4 years and the longest one she has ever had has been less than 10

seconds

> with most lasting less than 5 seconds. They lowered her ratio again to 3

to

> 1. She seems to be maintaining large ketones at this ratio and I have

been

> pleasantly surprised at her reaction to the food. We haven't had any

problems

> with her not eating what we fix for her.

>

> has always been very sensitive to new situations which seem to

bring

> on more seizures. I think her reaction was a combination of the low blood

> sugar, the two sedations (MRI and PET scan), and anxiety. I almost

forgot, she

> started getting a cold the third day of the initiation phase which still

hasn't

> gone away. Has anyone else experienced this?????

>

> Since we have been home, I have noticed an improvement but still not back

to

> where we were before we started the diet.

>

> Any thoughts would be appreciated.

>

> Thanks so much,

> Beth, Mom of age 5

[Guest guest]

Beth,

Seems to me that they didn't handle her initiation very well at all. In my

opinion, they shouldn't have initiated the diet on the same day they were

sedating for an MRI..... that's just poor planning. That's a lot for her

little body to handle all at once. RE: the ratio.... our clinic almost never

starts anyone at higher than 3.5:1 so that's where Katera was started at age 4.

We had already weaned all meds, too. You're lucky there..... it's great that you

won't have the ordeal of weaning them while on the diet. Five weeks is not very

long, though..... in the world of AED's, it's not impossible that there still

could be some fallout/withdrawal-ish stuff at this point. Some of the drugs hang

out in the body for some time...... especially in body fat. Is she a

skinny-minnie? Or does she have a little pudge? Katera had to be on restricted

calories at first in order to lose a little excess weight. They wanted this

because they say they get the best control in kids who are around the 25th

percentile for weight. So, anyway, as they burn that body fat, some of the drug

residue is having to be processed. I have even been told that if the body

perceives a particular substance would be extremely harmful, it will do whatever

it can to protect the brain and CNS from it..... basically treating it like a

toxin..... and will store it in the fat tissue to keep it out of the blood

stream and away from the brain. Now, it may even be that she will need a little

while to clear the Ativan out of her system.... on top of the sedation med. Has

she ever had a problem with any benzo type drugs in the past?

I hope things stabilize and get better soon for .... and I have a feeling

they will. I would just hold tight with that ratio if her ketones are between 80

and 160. Try to make as few changes as possible for a while and just ride it

out. Glad to hear she is liking the food.... that's a relief. I'm sure you're

disappointed in seeing an increase in seizures instead of a decrease.... but

hang in there. Give it some time.

Patti, mom to Katera

Re: Diet Initiation Reaction

My daughter , age 5, just completed the diet initiation phase. I

thought I was prepared for what would happen....boy was I surprised. I just

wanted

to get some feedback from the list " experts " to see if 's reaction is

common? I've always read that most people see some seizure control during

this

phase?

went in the hospital having anywhere from 30 to 100 absence seizures

per day. During the initiation phase she was having anywhere from 300 to 400

a

day which was confirmed by the video EEG. I think several things impacted

this including: day one of admission, she was sedated for an MRI; 2nd day

she

wasn't allowed to drink the 2/3's eggnog shakes due to a PET scan that

afternoon. She vomited 4 times that second day and was extremely lethargic.

Her

blood sugar levels dropped to the mid 30's. They ended up giving her 1/2 of a

popsicle which seemed to help. They lowered her ratio from 4:1 to 3.5 to 1.

Her second night in the hospital, she had her first nonconvulsive status

seizure, she was given Ativan to bring her out. She has had absence seizures

for

almost 4 years and the longest one she has ever had has been less than 10

seconds

with most lasting less than 5 seconds. They lowered her ratio again to 3 to

1. She seems to be maintaining large ketones at this ratio and I have been

pleasantly surprised at her reaction to the food. We haven't had any problems

with her not eating what we fix for her.

has always been very sensitive to new situations which seem to bring

on more seizures. I think her reaction was a combination of the low blood

sugar, the two sedations (MRI and PET scan), and anxiety. I almost forgot,

she

started getting a cold the third day of the initiation phase which still

hasn't

gone away. Has anyone else experienced this?????

Since we have been home, I have noticed an improvement but still not back to

where we were before we started the diet.

Any thoughts would be appreciated.

Thanks so much,

Beth, Mom of age 5