Phenobarb has stopped working - Topamax

[Faris'mom]

Hi there,

I am new to this site and I am very grateful to have been introduced. My son, has been diagnosed with cortical dysplasia and has been having seizures since day two of life. For the first 6 months of his life, this seizures have been under control with Phenobarb and it was just a dream. We thought we had this licked but of course the rug has been pulled and he has been having breakout focal seizures on the pheno and his dose his getting out of the therapeutic range and I do notice he has become much more irritable.

I believe the next step is Topamax and I was wondering if I could get some feedback on the medication especially from those who have little ones on it.

This is such a scary time for us, he is a beautiful little boy and I do hope we can find the right meds for him.

Thanks so much in advance,

Allison

[epileric]

It's good to have you here. Sorry about your son not reacting to the phenobarb anymore.

I can understand the anxiety of not knowing what to expect with a new medication but because everyone reacts differently to certain meds I wouldn't place too much weight on others reactions. I know when I tried keppra the effects on me were horrid but there are people on this site who got some good benefit from it.

My (humble) suggestion would be to be aware of the possible side-effects & watch for them. Also remember that quite often side-effects disappear as ones body gets accustomed to the drug.

http://chealth.canoe.ca/drug_info_de...nd_name_id=558

http://www.drugs.com/topamax.html

[Nakamova]

Hu Faris'Mom, welcome!

I agree with what Eric says above. Topomax works for som , but not for others. The main thing is to keep an eye on things that might be side effects and react accordingly.

And you might want to check out some of the others threads in The Nursery where other parents have posted: http://www.coping-with-epilepsy.com/forums/f42/

Best,
Nakamova

[Faris'mom]

Your responses are helpful. I am so new to all of this!

Allison

[epileric]

Because the Phenobarb initially worked, would Mysoline be a good consideration since it is turned into phenobarb and other chemicals in the body might that change things enough that your son reacts better to it or is that why it would not be a good choice? I would have to wonder

I know when I was on Mysoline & not having much luck the neurologist tried switching me to phenobarb but the side-effects were too strong (got violently angry at the drop of a hat).

In the body, Mysoline is converted into various other chemicals, including phenobarbital. Phenobarbital is a type of barbiturate and can help control seizures by acting as an anticonvulsant.

http://nervous-system.emedtv.com/mysoline/mysoline.html

[Faris'mom]

Thanks EE,

We have our neurologist appointment tomorrow. I will bring this up!

[epileric]

Excellent timing! Keep us updated on how things go.

[alivenwell]

I've been on Mysoline and Lamictal. Both have produced complete seizure control with the right amount slowly introduced into one's system. With you son being young, I'm not sure if Mysoline would have any effect on one of his children at some point in the future.

I'm always getting liver function tests and so far, everything has worked well. I know that barbituates can have an opposite effect on children by making them more irritable like you mentioned. That's why they introduced Ritalin as a stimulate for children so that their hyperactivity is more controlled.

Have they thought of surgery for him? My seizures started at the young age of 18 months due to an illness. With the advantage of youth, he may be able to regenerate new neurons based upon the theory of neuroplasticity. Neurofeedback is an option you may want to consider in the future. I also started a gluten free diet. Many parents in here have documented an incredible seizure control for their kids with epilepsy when they removed gluten from their kids diet. He is at the ripe age for the ketogenic diet, but that requires a measurement of keotins. That is supposed to also work well for young people.

[Faris'mom]

Thanks Alivenwell,

I actually asked about the Mysoline with my neurologist and she mentioned that my son is just too small to be put on this type of medication. She also noted that she does not think it would do the trick if pheno wasn't working as EE mentioned it is broken down into pheno and pheno isn't working.

RE: surgery, this is on the table but we have been told we are not there yet as it will only be considered once we have ruled out that the medication is not working. Pheno is his first med.

That said, if surgery is a viable option, we would like to have it done sooner rather than later due to the plasticity of the young brain.

Thanks!

Allison

[alivenwell]

Thanks Alivenwell,

I actually asked about the Mysoline with my neurologist and she mentioned that my son is just too small to be put on this type of medication. She also noted that she does not think it would do the trick if pheno wasn't working as EE mentioned it is broken down into pheno and pheno isn't working.

RE: surgery, this is on the table but we have been told we are not there yet as it will only be considered once we have ruled out that the medication is not working. Pheno is his first med.

That said, if surgery is a viable option, we would like to have it done sooner rather than later due to the plasticity of the young brain.

Thanks!

Allison

Interesting. I have done some research on the combo of Mysoline and Lamictal and they kind of conflict with each other. That combo has worked for me, so it must be a fine balance for most people. That gluten free diet would definitely be something I'd try. My parents were not aware of that one, and we always had cereal, bread, etc. without the knowledge of this diet.