Re: Blair is starting Keppra

[Guest guest]

Hey Jill, I remember you and Blair. Sorry to hear things are tough right

now. I don't have any experience with Keppra, but I know others will.

Good to hear from you.

Kathy - Mom to - keto since 02/00

On Wed, 08 Jan 2003 01:55:19 -0000 " bubbiesmom2000

writes:

> Hi guys, I know this is not keto related but you parents are the most

>

> knowledgeable around. I have been away for some time, some of you

> oldtimers may remember Blair. We weaned off the diet in aug after 3

>

> years. Welll, if you are wondering if the diet is working for your

> child, think very hard. After 3 months his sz have changed and

> gotten

> worse enough to give in and try an evil med. The choice is Keppra,

> any thing to watch out for? Inputs would be appreciated.

> Thanks in advance,

> Jill, Blair's mom, Santa , CA

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a

> last resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

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[Guest guest]

Hi Jill,

Yes I remember you and Blair - but, can't remember the reason you decided to

wean him off the diet. Any chance of putting him back on again?

I am sorry I can't help with keppra - has to be one of the few we have NOT

tried, but I know quite a few on the list here have - so I'm sure you'll get

some good feedback about it.

Any reason why this one has been recommended in particular?

Hill

> Hi guys, I know this is not keto related but you parents are the most

> knowledgeable around. I have been away for some time, some of you

> oldtimers may remember Blair. We weaned off the diet in aug after 3

> years. Welll, if you are wondering if the diet is working for your

> child, think very hard. After 3 months his sz have changed and gotten

> worse enough to give in and try an evil med. The choice is Keppra,

> any thing to watch out for? Inputs would be appreciated.

> Thanks in advance,

> Jill, Blair's mom, Santa , CA

[Guest guest]

Jill:

Our daughter Jackie is on kepra and depakote, and the keto. We are

currently weaning kepra, but Jackie has been on it for 2 years plus. Some

people have seen an increase in aggression (we haven't), some people have

seen an increase in sleepyness (yes), and we can vouch (now watching it come

down) that there is a subtle decrease in cognitive ability. It is not very

apparent, yet somehow it seems that our daughter had a " fog " on her brain,

which we are slowly weaning away. SHe is now down to 3.75 pills of kepra per

day or about 900 mg. Jackie weighs 52 pounds, and has grown almost 3 inches

in the year since the diet. SHe has also gained 12 pounds. She is on a 2.95

ratio, with 1500 calories.

mother of Jackie

age 7

[Guest guest]

Jill,

We tried Keppra on my son. It was a disaster. Made his seizures so much

worse. Plus he was very agitated. Our neuro told us that in over half his

kids, the seizures actually got worse. Though in the ones that it worked on,

it worked extremely well. Keppra can also cause behavioral problems. I've

heard it can be as high as 20% in children. Good luck!

ashley, alex's mom

----------

"

To: ketogenic

Subject: Blair is starting Keppra

Date: Tue, Jan 117, 1220032002, 18:55 PM

Hi guys, I know this is not keto related but you parents are the most

knowledgeable around. I have been away for some time, some of you

oldtimers may remember Blair. We weaned off the diet in aug after 3

years. Welll, if you are wondering if the diet is working for your

child, think very hard. After 3 months his sz have changed and gotten

worse enough to give in and try an evil med. The choice is Keppra,

any thing to watch out for? Inputs would be appreciated.

Thanks in advance,

Jill, Blair's mom, Santa , CA

[Guest guest]

Jill--

took Keppra for a year before starting the diet and then stayed on it 10

months along with the diet. PRE-diet she handled it well, although she didn't

realize any seizure benefits. She was on mega-doses (the recommended ceiling

for adults is 3000mg/day, and at 40 lbs. she was on 4000mg) and although she

didn't show side effects beyond mild cognitive suppression, we were very

uncomfortable with those volumes of meds. When we introduced the diet, she

began to have severe episodes of rigidity from the new way her body metabolized

Keppra. They were like Charlie horses, head to toe, and excruciating. Our

neuro said that they could have been her body's expression of the aggressive

side effect Keppra can have in 30% of pediatric patients at large doses, as she

has no other way to express aggression. It did take us 10 months to convince

him Keppra was the culprit, but once she showed improvement with each dosage

drop, he now agrees with us.

Just our experience, for what it's worth. I'd really watch for aggression

and/or agitation with Keppra, since 30% is a pretty high rate. Another is

hallucinations and night terrors reported by more parents than the literature

suggests should be reporting it.

Rose-Marie,

mom to (age 6)

[Guest guest]

> Rose-Marie, Thanks for the information, so far our neruo has only

suggested top of 500mg a day, but I know from past experience up up

up is what they want to do.

Jill, Blair's mom

[Guest guest]

--- In ketogenic , " Gill " <ashleygill@e...>

> , Arggghhhhh! I am sorry to hear about your didaster, did his

seizures settle down when you stopped the Keppra? What was the dosage

he was on? Thanks for the input, I will keep a very close eye on him.

We have been through lamictal toxicity and general drugged state out

pre-diet.

Jill, Blair's

[Guest guest]

Truthfully, I can't remember the dosage, but it was very low. Our neuro

usually starts very slowly. We started it because was going through a

particularly bad phase and we needed to do something. The diet, while very

helpful, has not been quite enough. The seizures stopped after stopping the

Keppa. He only was on it a mere 3 days. How quickly a disaster can occur!

Hopefully Blair will have better luck.

ashley

----------

"

To: ketogenic

Subject: Re: Blair is starting Keppra

Date: Wed, Jan 118, 1220032002, 19:51 PM

> , Arggghhhhh! I am sorry to hear about your didaster, did his

seizures settle down when you stopped the Keppra? What was the dosage

he was on? Thanks for the input, I will keep a very close eye on him.

We have been through lamictal toxicity and general drugged state out

pre-diet.

Jill, Blair's