I need advice please!

[mamajan]

Hi everyone

My 6 year old has been having partial complex seizures since June. They are slowly increasing in frequency and severity. I decided today to put him on Tegretol - 100mg twice a day. We are still waiting to see neuro. I would love any advice you could give me. About the drug or what questions I should be asking. Also, what precautions should I be taking? Does he need a medic Alert bracelet? I guess I just need a place to start. I appreciate any and all help.

Thanks

 

[Nakamova]

Hi Mamajan, and welcome to the forum!

Some folks here have had success controlling or reducing seizures using special diets and/or neurofeedback. You can search for information on those topics here, but it's also worth asking your neurologist about those options. You should definitely ask about any potential side effects from the Tegretol, both short term and long-term.

The medic alert bracelet is a good idea, as well as letting people (like teachers) know what to expect and what to do in the event of a seizure. There are a lot of misconceptions about epilepsy out there, so the more information everyone has the better.

Best,
Nakamova

 

[epileric]

Welcome mamajan

I've been on tegretol for at least 3 decades. This site should help inform you about the drug. http://www.drugs.com/search.php?searchterm=tegretol&is_main_search=1

All drugs have side-effects. The challenge is finding what one has the least side effects on your son since all anti-epileptic drugs react differently to different people.

Someone else posted this link here but I bookmarked it so that I could reference it. It might help somewhat with how to deal with your doc & what to ask http://psychcentral.com/lib/2009/taking-medication-16-ways-to-become-a-smart-self-advocate/.

Hope this helps.

 

[Cint]

Hi everyone

My 6 year old has been having partial complex seizures since June. They are slowly increasing in frequency and severity. I decided today to put him on Tegretol - 100mg twice a day. We are still waiting to see neuro. I would love any advice you could give me. About the drug or what questions I should be asking. Also, what precautions should I be taking? Does he need a medic Alert bracelet? I guess I just need a place to start. I appreciate any and all help.

Thanks

Hi mamajan,

I'm sorry to hear about your son having seizures. If the seizures are increasing in severity, do you know what to do if they were to go into a generalized seizure? How many seizure is he having in a day? How long do they last? These are questions the neuro will be asking. And if the seizures are increasing in severity and frequency, call the neuro's office and see if you could get in sooner. If he is in school, does the school know about his seizures and what to do if he were to have a seizure in class? I'd say it would be a good idea to get him a Medic Alert bracelet.

 

[Rae1889]

MamaJan, As i recently found out, if you go to an ER in Canada, They dont let you go until you see the neurologist (at least in MB)

How do you know he is having complex partials?
has he been diagnosed with epilepsy or seen his family doctor,
or have you come across the term on the internet and it is comparable to what he is doing? *I dont mean for that to sound rude, like your playing google doctor, but just wanted to know to try and help you out. I tried re-writing that 4 times but it sounds the same*

also has he had an EEG or CT scan or even blood tests yet? those would be your first steps to make sure this isnt something more serious and teh seizures arent just a side effect of another nasty thing.

Who prescribed him the tegretol? and does this doctor know that they are getting worse? If not talk to him first as he can probably make a quick call to the Neuro to get more advice or bump the appointment *there are always last minute cancellations usually about a week away when someone decides to change plans*