Son has had seizures since he was two weeks old

Nathan was born full term and healthy weighing in at 9lbs 5oz.  When he was two weeks old I noticed what I thought may have been a seizure.  While I was feeding him he would get very still, his eyes would look off to the right and his left arm would shake slightly.  It was so slight that I thought maybe I was just being paranoid. 

Nathan then started doing another strange movement he would lift his head and shoulders foreward, his arms would lift and he would make a grunting sound.  I taped the episodes and showed them to his pediatricain who assured me that they were not seizures but, a benign movement that he would outgrow around three months.  So I took Nathan home and we watched him continue to do these strange things. 

When he was five weeks old he had what I knew was a seizure.  I took him immediately to the pediatration where Nathan was set up to have an EEG and see a neurologist in three weeks.  I took him home and that night he started having seizures every fifteen minutes.  We rushed him to the hospital.  Nathan continued to have seizure after seizure.  During the seizures his oxygen saturation would drop into the 60's and I was very concerned that damage was being caused from lack of oxygen.  The nurses and doctors assured me that the oxygen deprivation was not lasting long enough to cause any damage.  Nathan's seizures were lasting about two minutes. 

The doctors feared that Nathan had infantile spasms.  You could see the sadness on the doctors face every time they came into our room.  Nathan had an MRI and a CAT scan, both of which were normal.  His bloodwork was also normal.  Nathan's EEG showed right focal seizures but no infantile spasms.  He was admitted to the ICU step down unit, started on phenobarbitol.  He was discharged after about 24 hours seizure free. 

We were home for one day when the seizures started again. So back to the hospital we went. Nathan was in the hospital for two weeks.  He was poked and tested.  He was sent home on an increased dose of phenobarbitol.  He continued to have seizures and many trips to the emergency room.  He was then started on Dilantin along with the phenobarbitol.  Nathan could not hold his head up and he would barely repond when spoken to.  We were constantly calling the doctor and taking him to the ER I refused to accept that this was okay. Nathan was waiting to see another neurologist that we had heard good things about but had to wait months to see. 

In the meantime we took him for a second opinion and had an appointment at Johns Hopkins.  The neurolgest we were seeing said he could not do anything else for Nathan so I think he got tired of us calling him everyday so he called the neurologist we were waiting to see for some advice.  At this point Nathan was also on keppra.  He was then admitted to the hospital for more tests and his keppra dose was increased.  Nathan immediately got some personality after the keppra was increased.  Nathan could not hold his head up until he was about six months old.  He walked at fifteen months old with the help of physical therapy.  

Nathan then developed what we called twitches.  He would have hundreds of them a day and he stopped advancing with his developmental milestones.  The twitches were seizures.  Nathan was taken off the phenobarbitol and started on Lamictol.  Lamictal did not help he was then weaned off Lamictal and started on Depakote.  The Depakote stopped the twitching however he still has breakthrough seizures about 4 a month. 

Nathan is now three years old, he has some minimal speach delays and very low muscle tone.  He falls alot and is unable jump, run, or go up and down stairs by himself.  He has had one concusion and a broken arm due to his falling.  He was started on the modified atkins diet about three weeks ago.  He seems a lot clearer and more verbal on the diet.  He was sick this week with a fever so he did have some seizures. 

Nathan is such a happy little boy, it is so hard to watch him have seizures and to worry about what the future holds for him.  Our neurologist has recomended he have a surgery consult to see if surgery is an option.  They would like to try Topamax next.  The Ketogenic diet is also an option.  I'm not sure what is the right choice but if there is one thing I have learned from this whole experience it is that we are our childrens advocate and as a parent you should trust your instincts.