Re: Did anyone see an increase in seizures when first initiating diet?

[Guest guest]

Yes, this can happen........ especially if meds are still on board. The

diet changes the way they're metabolized and can make levels go wacky.

Sometimes it's just a matter of the kid getting used to ketosis...... the

first weeks can be rough. Hang in there...... and if the increased seizures

continue, ask to have his levels checked or dosages adjusted if he's still

on meds.

Patti, mom to Katera, former Keto Kid for over two years.

Did anyone see an increase in seizures when first

initiating diet?

> just started Monday had a huge amount of absence and a

> GTC.and was pretty much the same Tuesday.He has been a bit better

> since,but I didn't expect that.Linn

>

>

[Guest guest]

YES! Nate had tons of myoclonics, but we pinned it down to his sugar

being so low. I didn't realize it could get worse, either, and was

devastated.

's doing so much better now, three weeks later: hardly any

seizures, alert, and interactive! Hang in there!

Meredith

> just started Monday had a huge amount of absence and a

> GTC.and was pretty much the same Tuesday.He has been a bit better

> since,but I didn't expect that.Linn

[Guest guest]

Yes, seizures can increase at beginning. The body is making a big

switch in its primary " fuel " source. The brain has to adjust. I've

heard that it can be worse if the initial fasting period is long.

Is still on AEDs? That can also be a reason for increased

seizures due to toxicity (esp. Depakote) or too much acidity (Topamax

or other carbonic anhydrase inhibitors). IF he is on meds and things

don't settle out in a week or two, I would consider the possibility

of an unfavorable combination of diet and meds. You might want to

discuss the possibility of weaning one (or more?) meds.

Cammie

> just started Monday had a huge amount of absence and a

> GTC.and was pretty much the same Tuesday.He has been a bit better

> since,but I didn't expect that.Linn

[Guest guest]

Yes, seizures can increase at beginning. The body is making a big

switch in its primary " fuel " source. The brain has to adjust. I've

heard that it can be worse if the initial fasting period is long.

Is still on AEDs? That can also be a reason for increased

seizures due to toxicity (esp. Depakote) or too much acidity (Topamax

or other carbonic anhydrase inhibitors). IF he is on meds and things

don't settle out in a week or two, I would consider the possibility

of an unfavorable combination of diet and meds. You might want to

discuss the possibility of weaning one (or more?) meds.

Cammie

> just started Monday had a huge amount of absence and a

> GTC.and was pretty much the same Tuesday.He has been a bit better

> since,but I didn't expect that.Linn

[Guest guest]

Cammie,He is still on lamictal and unfortunately the protocal at this

hospital is wait 6 months until they start to wean.He is doing better

though and has so much more energy than before.One thing I have

noticed is that when his blood sugar drops he has a lot more

seizures.I also have noticed atonics coming out where his leg goes

limp.

[Guest guest]

Cammie,He is still on lamictal and unfortunately the protocal at this

hospital is wait 6 months until they start to wean.He is doing better

though and has so much more energy than before.One thing I have

noticed is that when his blood sugar drops he has a lot more

seizures.I also have noticed atonics coming out where his leg goes

limp.

[Guest guest]

Cammie,He is still on lamictal and unfortunately the protocal at this

hospital is wait 6 months until they start to wean.He is doing better

though and has so much more energy than before.One thing I have

noticed is that when his blood sugar drops he has a lot more

seizures.I also have noticed atonics coming out where his leg goes

limp.

[Guest guest]

Linn,

Unfortunately, many keto centers use a protocol like yours with

regard to weaning drugs. Some even want the child to be seizure free

before weaning... which is obviously impossible IF the presence of

the drugs is not allowing the diet to fully control the seizures.

Some kids do well with Lamictal, others don't. There are some kids

here who have weaned it successfully. Did he have the " atonics "

before he started the diet? If not, I would consider the possibility

that those may be due to an unfavorable med/diet combination. You

are just starting out, though, so give it some time.

Anyway, I'm glad to hear you say, " He is doing better " . If you see

that, then the diet is doing someting already. I hope it will only

get better. More energy is another great sign!!! It's quite common

for kids to be very lethargic in the beginning. If he's not, so much

the better!!

He will adjust to the lower blood sugar. We had very low blood sugar

the first two days in the hospital. I think it's hard to say that is

the actual cause of his seizures at this point, UNLESS low blood

sugar has been a factor for him all along. The diet causes a huge

metabolic " shift " and it takes some time for the body to adjust to

high ketones, acidosis, lower blood sugar levels, high fat intake,

etc. Overall, it sounds like you are off to a good start!

Cammie

> Cammie,He is still on lamictal and unfortunately the protocal at

this

> hospital is wait 6 months until they start to wean.He is doing

better

> though and has so much more energy than before.One thing I have

> noticed is that when his blood sugar drops he has a lot more

> seizures.I also have noticed atonics coming out where his leg goes

> limp.

[Guest guest]

Linn,

Unfortunately, many keto centers use a protocol like yours with

regard to weaning drugs. Some even want the child to be seizure free

before weaning... which is obviously impossible IF the presence of

the drugs is not allowing the diet to fully control the seizures.

Some kids do well with Lamictal, others don't. There are some kids

here who have weaned it successfully. Did he have the " atonics "

before he started the diet? If not, I would consider the possibility

that those may be due to an unfavorable med/diet combination. You

are just starting out, though, so give it some time.

Anyway, I'm glad to hear you say, " He is doing better " . If you see

that, then the diet is doing someting already. I hope it will only

get better. More energy is another great sign!!! It's quite common

for kids to be very lethargic in the beginning. If he's not, so much

the better!!

He will adjust to the lower blood sugar. We had very low blood sugar

the first two days in the hospital. I think it's hard to say that is

the actual cause of his seizures at this point, UNLESS low blood

sugar has been a factor for him all along. The diet causes a huge

metabolic " shift " and it takes some time for the body to adjust to

high ketones, acidosis, lower blood sugar levels, high fat intake,

etc. Overall, it sounds like you are off to a good start!

Cammie

> Cammie,He is still on lamictal and unfortunately the protocal at

this

> hospital is wait 6 months until they start to wean.He is doing

better

> though and has so much more energy than before.One thing I have

> noticed is that when his blood sugar drops he has a lot more

> seizures.I also have noticed atonics coming out where his leg goes

> limp.

[Guest guest]

Linn,

Unfortunately, many keto centers use a protocol like yours with

regard to weaning drugs. Some even want the child to be seizure free

before weaning... which is obviously impossible IF the presence of

the drugs is not allowing the diet to fully control the seizures.

Some kids do well with Lamictal, others don't. There are some kids

here who have weaned it successfully. Did he have the " atonics "

before he started the diet? If not, I would consider the possibility

that those may be due to an unfavorable med/diet combination. You

are just starting out, though, so give it some time.

Anyway, I'm glad to hear you say, " He is doing better " . If you see

that, then the diet is doing someting already. I hope it will only

get better. More energy is another great sign!!! It's quite common

for kids to be very lethargic in the beginning. If he's not, so much

the better!!

He will adjust to the lower blood sugar. We had very low blood sugar

the first two days in the hospital. I think it's hard to say that is

the actual cause of his seizures at this point, UNLESS low blood

sugar has been a factor for him all along. The diet causes a huge

metabolic " shift " and it takes some time for the body to adjust to

high ketones, acidosis, lower blood sugar levels, high fat intake,

etc. Overall, it sounds like you are off to a good start!

Cammie

> Cammie,He is still on lamictal and unfortunately the protocal at

this

> hospital is wait 6 months until they start to wean.He is doing

better

> though and has so much more energy than before.One thing I have

> noticed is that when his blood sugar drops he has a lot more

> seizures.I also have noticed atonics coming out where his leg goes

> limp.