I feel for you and your family. It is tough to see someone you love, so young, go through something like this. There is hope. It can take some time though, so be patient. Switch doctors if you feel they are not giving you answers to all your questions.
My son started having seizures when he was one year old. For us, he kept having them everytime he was sick so they were classifying him as having complex febrile seizures. They were complex because he stopped breathing when he had them. He was having mild ones at home every half hour or so, so we took him to CHOP where, thank god, he had a severe one and stopped breathing for 12 minutes which seemed like an eternity. After that they prescribed me diastat (Rectal valium) to use in cases that he that he did not come back on his one after 4-5 minutes! I have ahd to use it too!
Anyway he started having seizures when he was 2 without being sick and now he is classified as epileptic-complex partial seizures. My mom is also epileptic but she has gran mal seizures. She takes tegretol. It took time to find the right medicine and dosage but she has been seizure free for 25 years. Her only complaint with tegretol is the foggy memory! My son has damage to the left temporal lobe. Through testing they found he has damage there and his left side is smaller than the right. He had a traumatic delivery at birth and they found that he had a mild stroke at birth. HE had several EEG's and differnt types and his activity was always normal. They tell me he could have a learning disabilty or speech problems. So far he has never been behind so maybe I will fall into the 1% for something good!!
I did not want my son on a medicine that the levels needed to be checked regularly. They first placed him on Trileptal but was removed due to speech problems. He was stuttering horribly and really struggling to get words out. He was removed from that med and in the process of getting him on his full dosage of Keppra he had 2 more seizures. He was on Keppra for 4 months. The problem with this med was that it made him aggressive and restless. He mood change was 360 degrees. We tried adding B6 along with the Keppra because that can in some cases counteract the aggressiveness. After four months we decided to try another med, Lamictal. This med took 3 months to get to his full dosage twice a day. Then we weaned him from the Keppra to help him not have anymore seizures. This worked. No seizures and my sons temperment was BACK!!!!!! We see minimal side effects! He has been SEIZURE FREE for 11MONTHS !!! YEAH!!!! With all of the meds his was on he never had to have levels checked which was great! He will be four at the end of next month and if you were to see him, you would never know that anything was wrong with him. He is in preschool 5 days a week and is on track with all the other kids. I also know this because he is a twin and him and his sister are developing the same. He does have a lot of energy and am told that their brains are always going!!!! Once he gets waund up it is hard to get him to calm down. The school knows to pull him aside and give him an activity to work on ex. coloring, puzzle to stop him from running. It has worked. The key is communictaion!
If he needs help when he is in school I will get him help. You just need to be your sons advocate and question EVERYTHING. There are a million drugs out there and you know your son. Trust your gut and if you feel the drug is not right for him, demand another one. It never can hurt to get a second opinion either. At the end of the day just try your best to do want you can and give him a chance but HE CAN FUNCTION IN THIS WORLD AND BE NORMAL!!! (WHATEVER THAT WORD MEANS)!!! Good luck to you and your family and stay strong for him! I am confident that you will eventually get there.