New and Scared

[Karib]

Hi all, I am new to posting on the site but not new in reading and getting information. My son who Jonathan is 11 years old and was diagnosed with Absence Seizures in 2006 just as he was starting first grade. He has been on Lamictal, Zarontin, and Keppra. He was doing pretty good on a combo of Keppra and Methosuximide (zarontin) and then he needed some immunizations for school, did not feel comfortable but went a head and had them done, a week later he went into a Mycolonic type seizure, basically tremors that would not stop however he was conscious and aware of them. Dr. increased Keppra to 750 mg 2 x a day and started him on narontin for the tremors, no success and seems to be getting worse especially in the mornings. Finally had a telephone appointment with Dr. yesterday and posed the question of does he now have Myoclonic seizures???? Most likely yes! We are going today to try out Neurofeedback therapy which I found out about on this site. Has anyone else out there tried it?

[Nakamova]

Hi Karib, welcome (officially)!

I hope you feel free to post comments and ask questions. A number of people have used neurofeedback. Here are some threads from the archives:

neurofeedback
Attended Neurofeedback seminar in Dallas
Neurofeedback - Rebecca's Story
EEG Neurofeedback

Another thing you might want to explore is the use of diet. the Modified Atkins diet in particular has had success in dealing with absence seizures. It might enable you to lower your sons meds a bit. More info here:http://www.atkinsforseizures.com/

By the way, Neurontin can CAUSE tremors, so you might want to ask your doctor about discontinuing it. The below quote is from http://www.ehow.com/about_5407987_tr...eurontin_.html

Neurontin can cause tremors, conditions that mimic a seizure or tremors (such as Tardive Dyskenisia), and twitching in patients.

Best,
Nakamova

[Endless]

Hi, Karib,

I just want to welcome you to the forum. There are lots of parents in here, so you'll feel right at home. Tons of good information and support.

[Karib]

Thank you for the insight on the Neurontin, he wants to up the does at night for a few days to see if it helps with the tremors in the morning.......makes you question why do they prescribe something to help with a sympton when the side effects are the symptom?? Argh!

[Endless]

Karib,

Yes, there are drugs to treat the tremors. But the drugs to treat the tremors can have side effects themselves. Some docs will prescribe propranalol (Inderol) or mysoline (Primadone).

Taking drugs to control side effects is a slippery slope. You can end up on 20 meds.

I'm on Lamictal and Diamox. To keep me on those two drugs I'm on a ton of other drugs. I'm on:
antacid,
anti-nausea,
ultra-high dose of potassium (30M a day, equivalent of 180 bananas per day),
inderol,
gabapentin for nerve pain (from diamox),
diuretic,
sleeping pill,
special toothpaste to protect teeth, and
occasional anti-rash creams.

That's 9 prescription drugs just to keep me on my seizure/IIH meds.


All this garbage is prescription required, and expensive. Most of those meds have their own side effects. Add in enough supplements to choke a horse. Ugh.

Yes, there are drugs to treat symptoms. Do ask your doc. But don't end up on nine of them like me.

[BigWill]

Welcome to the forums! You will find plenty of help and support here! I am thankful every day for this site! All you have to do is ask a question and you can bet someone will respond.

[Karib]

We went to our first Neurofeedback Therapy Session yesterday with Dr. Noel Jones, she was really through in her questions and covered everything. She is starting with the Lens therapy and we will go once a week. I did notice that his tremors were worse last night and he had one moment in the car that he was having a hard time with speech and even said hope I am not getting a stutter. The Dr. did say it could make things worse before better as things are adjusting. Only time will tell.

[Karib]

Endless, have you tried a good digestive enzyme? They really help with stomach issues. Just a thought. Sorry you have to take so many meds. My son on top of the 2 Seizure meds and the tremor I give him a B complex, Omega 3, digestive enzyme, Calcium-Mag-Zinc, and CQ10.

[Endless]

Karib,

Thanks for the idea. I have papaya enzymes on the shelf and had forgot about them. I'll give it a try....