Question about Phenobarbitol and Keto Diet

[Guest guest]

Logan started on Phenobarb on Jan 12th as a " temporary med " until

things calmed dowm. (dose is 30mg AM and 45 mg HS) He has very little

energy and is very tired all the time. Does anyone have experience

with this med and the diet? weaning info? or anything would help me.

Thanks so much.

Laurie Mom to Logan 2

[Guest guest]

Hi Laurie,

I'm hoping that with your questions about weaning that things have

indeed calmed down for Logan. My youngest daughter, Maggie, has been

on phenobarb for several months. She is not on the diet (that's

Macie), but has had a couple of febrile seizures. Our new neuro that

we saw last month wants her off the phenobarb, says we don't need to

be treating the febriles with anything daily.

We are weaning down from 20 mg twice a day (liquid). They gave

us this weaning schedule:

Weeks 1 & 2: 20mg am 10mg pm

Weeks 3 & 4: 10mg am 10 mg pm

Weeks 5 & 6: 10 mg am 0 mg pm

STOP

Maggie just turned four and weighs about 40 pounds, and it looks like

Logan is roughly double her dosage. I don't know if my info helps

you or not, but I think it might show the wean may be a long process.

Maggie reacted the opposite on phenobarb, which can be just as

common as the lethargy, etc. She was hyper, prowled around half the

night, gave up her naps, and we noticed aggressiveness coming out.

I'm glad to be gettting her off. Her neuro says it can cause

cognitive and devlopmental delays, and is extrememly addictive.

I hope Logan, and all of you, are doing well.

Take care,

Glenna

> Logan started on Phenobarb on Jan 12th as a " temporary med " until

> things calmed dowm. (dose is 30mg AM and 45 mg HS) He has very

little

> energy and is very tired all the time. Does anyone have experience

> with this med and the diet? weaning info? or anything would help

me.

> Thanks so much.

> Laurie Mom to Logan 2

[Guest guest]

Its generally reduced immediatley upon starting the diet cuz its so easy

to go toxic on it on the diet. I would say reduce the pheno or reduce

the ratio a little

peteymedic1 wrote:

> Logan started on Phenobarb on Jan 12th as a " temporary med " until

> things calmed dowm. (dose is 30mg AM and 45 mg HS) He has very little

> energy and is very tired all the time. Does anyone have experience

> with this med and the diet? weaning info? or anything would help me.

> Thanks so much.

> Laurie Mom to Logan 2

>

[Guest guest]

We just started the diet on January 7. Our daughter was taking

75mg of Phenobarbital at bed time. It was immediately reduced

by half while in the hospital. She is now taking 32.4mg at bed

time. We were told that reducing it by half that her bodyworuldn't

even notice the redution. The only time we had problems

(behavioral) were when he was on too high of a dose. She has

been on it since she was 10.5 months old. We did not start

seeong developmental delays unyil she was 2.3 years old and

have tried to get her off of this med since then. She is now 4.3

months old.

Good Luck.

>

> > Logan started on Phenobarb on Jan 12th as a " temporary

med " until

> > things calmed dowm. (dose is 30mg AM and 45 mg HS) He

has very little

> > energy and is very tired all the time. Does anyone have

experience

> > with this med and the diet? weaning info? or anything would

help me.

> > Thanks so much.

> > Laurie Mom to Logan 2

> >

>

>

>