Seeking Ted's Help For 8 Year Old Son With Brain Tumor

Dear Ted,

I have a 8 year old son who was diagnosed with pilomyxoid astrocytoma WHO grade 2 when he was 3 years old. ( May of 2010). My son had a seizure for the first time 05/10/2010. This is how we discovered there was a tumor in his brain on the left side behind his eye. They said this is a rare case because the tumor is on the left side, and affects his left side. When he had his big seizure in 2010 his left side jerked not his right. Only part of the tumor was removed. The surgeon was unable to distinguish the good and the bad brain.

We were then sent to a cancer treatment center for continued care. Of course they scared us and mentioned chemo. We quickly told them we did not want that. The board met and decided no chemo was needed. My son was put on triliptal to make sure he wouldn't have seizures after surgery. He had all the side effects. After a year of being on 7ml in the morning and 7 ml in the evening, I began to wean him slowly. To see how he would do. I refused to believe that my son was going to continue having seizures and needing this medicine that made him sleep a lot. I weaned him to 5ml only at night. He stayed on this dose with no issues except small left eye twitches, until January 2014. In January he had his first absent seizure. He had one a month until March I believe. Then they became more. He has facial movement and grunting now. The seizures are becoming more. He's already tried three medications. They may slow them down, but they do not stop them. He had 21 seizures this February. I know there are children who have it worse.

We saw a surgeon 2 days ago. Of course they sound like the best salesmen in the world. Telling us they can remove 80%. I don't see what this surgeon will do the last one didn't. They are partners. We do not want to open him back up, and we don't want to use harmful chemicals. We asked the surgeon if this should be the last surgery or were we going to have to have surgery every three and half years, he said we might. There is no plan to kill the tumor that would remain.
The tumor has grown slightly since surgery in 2010. We are thinking that's why the seizures got worse.

I've been giving him cold pressed flax seed oil since he was three, and if he doesn't take it he twitches every 5 minutes. So we really don't know what the meds do beside make him confused, and he doesn't have a very good memory now. He forgets how to unlock doors and gets confused on simple things. Before the meds he was bright and smart. Now he is below grade level, angry, and hyper. He is unable to exercise due to the twitching and seizures. So he is probably 15 pounds over weight. He does play on our trampoline, but it's not too one before he Twitches. We know that sugar, illness, and activity can bring the seizures. He is also home schooled now. He's currently taking:

9am
3 Levetircetam 250mg AM
900mg oxcarbazepine
2400 cold pressed flax seed oil

500 mg vitamin c
400 IU Vitamin

2pm
2 Levetircetam 250mg

9pm
3 Levetircetam 250mg AM
900mg oxcarbazepine
1200 cold pressed flax seed oil
500 mg vitamin c
400 IU Vitamin e

The supplements were not recommended by the doctors. I added them from my own research. The doctors did not object to them. We don't eat bad foods, and are very strict with our children's sugar intake. We want the tumor gone without harsh chemicals or another surgery. Any advice is appreciated. We hope to hear from you soon.

Thanks for your time.