Re: felbamate/ doctor gab

[Guest guest]

Hi Joanie,

has never tried felbamate, and I too was wary of it, mainly because

of the aplastic anemia risk - but, from what I understand, severe

consequences are a lot rarer than in recent times, as since the risk has

become more well known, very frequent blood checks are apparently carried

out to make sure nothing untoward starts developing in bloodwork. If

anything does start showing, the child is pulled off straight away.

If is going to be starting the diet soon though, I personally

would stay clear of a new med until you see how he responds to ketosis. Many

meds can actually interfere with the diet, and so can make the 'finetuning'

aspects (like cals,meal spacing etc) that much harder to perfect.

Toxicity is also an increased risk once the child is in ketosis (been

there done that in a big way with ) , the way the meds are metabolised

can alter, and a lot of kids can find themselves having increased rather

than decreased seizures due to AED toxicity.

PS - Wondered in what way his LGS is atypical? was initially

diagnosed with this, then changed to MAE (myoclonic astatic epilepsy, or

Doose syndrome), similar to LGS but with subtle differences, which actually

has the keto diet and ACTH (steroid course) documented now as first line

treatments before the traditional AEDs.

----- Original Message -----

From: " joanie46115 " <bjwilson@...>

> Sorry if I misspelled this drug. Anyhow, my doctor had consented to

> trying the Keto diet, but he has made it clear he wants on

> Felbamate. We read some on it and about choked. It frightens me. 1

> out of 3000 children develop aplastic anemia and a lesser number, but

> still significant, develop hepatic failure. I feel our doctor cares,

> but he told me right off the bat when I first met him he was

> overloaded and there is a horrid shortage of pediatric neurologists.

> Anyhow, he acts like I am being ridiculous to be so worried about the

> drug Felbamate or whatever it is. He says it is mainly dangerous for

> children pre-puberty. is in the early to mid stages of

> puberty. He has a long way to go. He says this is really helpful to

> Lennox Gastaut patients. Bt the way, can you believe he has only seen

> one case of this in all his yrs of practice? This might explain why

> was misdiagnosed all these yrs. His case is atypical, too,

> which threw them off even more.

> This doctor has said he will help fight in the appeal to the

> insurance co over the denying the chance to go on the diet,

> but he is not a big fan of the diet and his nurse has said she will

> be doing most of the work.

> Comments on this drug, anyone?

>

> Joanie

[Guest guest]

Joannie,

Here's some info I found on Felbamate also known as Felbatol. I'm not

sure this is the same info you have. Grace

Felbatol (FEL-ba-tol) is used as add-on and single drug therapy in people

whose seizures cannot be controlled with other medications. It is

prescribed for adults over the age of 14 with partial seizures with or

without secondary generalization. It is also used as add-on therapy for

partial and generalized seizures (including drop attacks) associated with

the Lennox-Gastaut syndrome in children. Felbatol is available in tablets

or liquid. Initial response to the drug was positive in many patients;

however, its association with aplastic anemia (between 1/3000 and 1/8000

cases) and liver failure (1/18,500 to 1/25,000) has limited its use.

Felbatol is known to interact with Dilantin, Tegretol, TegretolXR,

Carbatrol and Depakene/Depakote. Doses of these medications may have to

be modified when Felbatol is used. It is generally regarded as best used

as single drug therapy. Common side effects include trouble sleeping,

headache, loss of appetite, weight loss, nausea and vomiting. Because of

its potential for serious side effects, patients must be notified of its

risks and are required to sign a consent form in advance. Routine

monitoring of liver and bone marrow function is recommended, but will not

necessarily warn of impending damage. Safety in pregnancy has not been

established. Women who are taking this medication and who wish to become

pregnant should discuss treatment options with their physicians before

the pregnancy begins.

Not everyone experiences side effects. There may be other side effects

not appearing above. For a complete list, consult your doctor, nurse, or

pharmacist. More detailed sources of information on side effects include

the drug's prescribing information sheet, the Physician's Desk Reference,

or pharmaceutical company which produces the drug.

On Mon, 29 Mar 2004 05:28:23 -0000 " joanie46115 " <bjwilson@...>

writes:

Sorry if I misspelled this drug. Anyhow, my doctor had consented to

trying the Keto diet, but he has made it clear he wants on

Felbamate. We read some on it and about choked. It frightens me. 1

out of 3000 children develop aplastic anemia and a lesser number, but

still significant, develop hepatic failure. I feel our doctor cares,

but he told me right off the bat when I first met him he was

overloaded and there is a horrid shortage of pediatric neurologists.

Anyhow, he acts like I am being ridiculous to be so worried about the

drug Felbamate or whatever it is. He says it is mainly dangerous for

children pre-puberty. is in the early to mid stages of

puberty. He has a long way to go. He says this is really helpful to

Lennox Gastaut patients. Bt the way, can you believe he has only seen

one case of this in all his yrs of practice? This might explain why

was misdiagnosed all these yrs. His case is atypical, too,

which threw them off even more.

This doctor has said he will help fight in the appeal to the

insurance co over the denying the chance to go on the diet,

but he is not a big fan of the diet and his nurse has said she will

be doing most of the work.

Comments on this drug, anyone?

Joanie

[Guest guest]

Hi ,

The thing which most worries me about felbamate is that I have read

the anemia can very suddenly develop and that it is not always

reversible. Same for the liver failure. IF it was reversible I

would be gamer to try.

I don't know if he is going to be able to go onto the diet

due to the insurance stuff, but I am continuing to wean him off all

meds. He has one topamax pill to go and 2 Keppras. I will do

SOMETHING.

By atypical I mean that he does not have the drop seizures associated

with LGS. He has motor stuff in the night and not in the day. He

has lots of types of non-convulsive seizures in the daytime. He is

not profoundly retarded, and I didn't realize untile recently that

most poor little ones with LGS are and are often on G tubes.

can read and do some math and he is very slow and behind, but I KNOW

it is the interference of the the seizures. He has had a few

respites from the seizures and it was like we had this normal little

boy and then... it came and pulled him under again. His last 24 hr

eeg showed the typical pattern for LGS, so that is why he is

considered an atypical LGS.

Blessings!

Joanie