Re: To Jim P. Regitz/ Sabril (drug)?Christy

[Guest guest]

Jumping in here, because I have just got off the phone with another parent who

is facing a similar situation with her little boy - sabril is also known as

vigabatrin, and is from what I can gather, one of the more effective meds in

particular for Infantile Spasms.

The reason it is restricted in some countries is I think because of the risk

of the child developing tunnel vision that comes as one of the possible side

effects. For that reason regular eye checks are recommended, so I think it is

definitely one that should only be used under a Dr's close supervision. We can

get it here in New Zealand, but only under 'compassionate' grounds, in other

words, not under our prescription service, but it can be obtained and funded

under a special excemption with a Dr's recommendation.

And yes, the diet can be stressful, but after a while it becomes second nature

to both the parents and child, and if successful seizure wise, well, any stress

factor from having to weigh food, be vigilant with what foods are consumed etc,

is soon outweighed by the positive outcome. And yes, seizures can break through

if food not calculated into the diet is eaten, but this is an individual thing,

sme kiddies can have 'cheats' with no real adverse effect, others have to stick

to the exact gram what the dietician calculates. If a seizure does break through

though, it does not mean seizure control will not be attained again, think of it

as like an AED, where yes a missed dose can cause seizures, but once the

treatment is back on track, the status quo should prevail.

Sounds to me like your current Dr is not a huge keto diet fan fullstop, so if

you do decide to go ahead with it, be sure to find one who is supportive - it

can make a big difference success and compliance wise,

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

From: CHRISTY VELA

Jim,

Thanks for replying. Tomorrow, I will be going to The Children's Drisco

Hospital in Corpus for a second opinion with a Neurologist who is also known to

be the best. The Neurologist that Sebas is seeing here in my town is well known

around and is also an instructor and an author of books that he has written

about Epiliptic seizures.

My baby seems to have regressed back to his seizures after being on

Pheno. and Valproic Acid, so he therefore, wants to try a drug that is forbidden

here in the US. It is called Sabril. Have you heard of this drug? The doctor

says it is sold everywhere (like Canada & Mexico), except here. I can easily

get that drug, since I live near the border of Mexico. He said this drug works

very well with infantile spasms....that it completely stops the seizures. He

knows of this drug becuase he studied in Venezuela, MX.

I did persist on the diet, though. So...he is letting me get a second

opinion to feel more comfortable about being with him and also is letting me

have my baby see a dietitian next week to see what I would have to do if I put

him on the diet. He says that the diet is stressfull and if anyone gives Sebas

a treat that is not part of the diet, he will regress back quickly to his

siezures, even if he was on the diet for a year or more. Is this true?

I work and go to school.....and my mom is that caretaker while I am out.

Is this diet really hard or easy to comprehend for my mother??

Thanks,

Christy