Some things to think about

Hello reader, my son is 7 and has had seizures since 20 months. First, just an occasional, short seizure, then later after being on Tegretol for a year, frequent myoclonic seizures. We added Topomax, then Keppra and tried various other combinations trying to subdue the seizure frequency. At times we had decent sz control for weeks on new meds, but gradually they would come back more & more, and stronger & stronger until he would start getting injuries and we would beg the doctor to do something! At one point he was on 3 sz meds at the age of 5 and having 20-30 myoclonic "events" daily. Plus he was not doing well in school, each year he was falling farther & farther behind (he started preschool at 3). When he was 6 he was still having 5-8 seizures a day, no matter what medicine or combination we tried, so we wanted to try to take him off some of the drugs - Topomax was dropped, then Trileptal was weaned in to replace the supposedly older version of carbamazepine - Tegretol. This horrible medicine, while it seems to work well on others, caused my son to have drop seizures, and he would suddenly slam into the ground, causing numerous head & facial injuries. When we quickly got him off THAT, we tried him just on Lamictal only - and I started seeing more of my son's soul shine through. He was talking more (some of the drugs made him stutter badly and/or revert him back to babytalk and pointing at things). And he was much more awake - previously, he would sleep 10+ hours a night, plus a nap every day - and falling asleep if he was in the car for more than 5 minutes. He did well for a while on Lamictal only, then the szs started coming back, so we added the former Tegretol, only to see even more seizures and he was getting injured again (he has had 2 broken noses & numerous bloody noses or bloody lips since last September!) It was obvious carbamazepine was no longer helping him, so we regretfully we put him back on Topomax in addition to the Lamictal. I say regretfully because it is true that Topomax impairs one cognitively, but in truth, they probably all do. The great thing is that we now have the best seizure control in years - and he is talking lots and much better (he has fine motor skill problems from a form "scarring" on his left temporal and frontal lobes, which in addition to causing seizures, make it difficult for him to use his tongue correctly to speak clearly). Anyway, he is currently having an average of ONE 10-15 second seizure a day!!! However, being 7, he is starting to really become aware that he is not like most of the other kids around him. Also, as far as behavior, he is a very loving, thoughtful, kind and sweet young man. But he has occasions where he is just not himself, sort of spazzing out, being out of control, making loud noises, swinging his arms, kicking. Other times he just reacts very impulsively, sometimes hurting his baby sister by shoving her too hard, etc. Usually after episodes like these he is very contrite and often cries like his heart will break, sobbing that he doesnt understand why he does these things. It is so hard for me to tell which of his difficulties to blame on the seizures, the medicine, or the brain damage he has (scattered scarring throughout his left temporal & frontal lobes). So now I have a dilemma: We were about to try the Ketogenic diet, which was looking like a lifesaver in spite of the fearsome food restrictions my son would have to endure. But we were willing to do it to keep him safe (by stopping the seizures) and hope for improved cognitive ability and/or increased motor skills. But in the meantime we have seen so much better seizure control on the Lamictal-Topomax combination, that the diet doesnt seem like such an emergency. Also, he is now being seen at Shands Hospital in Florida and the doctor there, after reviewing his MRI & EEG, feels that surgery may be able to help my son! This was amazing news, as we had been told by a previous, very well-esteemed epileptologist, that surgery could NOT help him. So the idea that he has a chance to be seizure-free or greatly-reduced is very alluring despite the scary words "BRAIN SURGERY". I realize tho, that brain surgery is so much safer than ever…that my son is young and so his brain will be able to compensate & retrain itself much easier…that being seizure-free is probably his greatest desire and I should do whatever I can to help him to do that. But still, you think to yourself, someone is going to cut my son's head open and take out little pieces of his brain! What if they take the wrong pieces, what if something bad happens, what if, what if?! What if it does no good and he has to go thru that for nothing? And now that he is only having 1 seizure a day compared to the 5-8 or 20-30, he is doing really great! It may stay this way or it may not. Should I submit him to BRAIN SURGERY now, or wait to see if the seizures get worse again? Or maybe, I should forget about bad old brain surgery altogether and try the diet. But that doesnt sound very good either - he is skinny already, and the diet is a DIET after all, - I saw children at Shands that were very, very thin. He LOVES pasta, brownies, milk & juice - I really dont want to prevent him from eating all that and no birthday cake or Halloween candy for the next 2 years, that's part of the whole "quality-of-life" thing too. He is going to be admitted for his second in-hospital video EEG in the coming month or 2, to further determine the likelihood of whether surgery will help, so I dont need to decide yet. So parents, have you ever tried your child's medicine? My son was taking 200 mg a day of Tegretol, plus Topomax and Lamictal. One day I took 50 mg of Tegretol, just to see what I felt liked and get an idea of how HE might feel. It was nasty! I definitely had a much harder time thinking things thru, I felt foggy & slow and irritable - because I hated how I felt and I knew I could do better! My point is, I think we should do whatever we can to stop the seizures without drugs. The drugs may subdue the seizures for a while, but cause a myriad of other problems. We give them to our kids because the seizures have to be stopped or they will keep getting hurt - both from accidents and from eventual brain damage caused by repeated seizure activity (the seizures DO damage the brain, dont let your doctor tell you different). Also, parents new to all this - be aware that the drugs will sometimes make your child worse. 3 days of Depakote made my son drool, be incontinent durin the day and lash out, he was totally not himself. Trileptal, as I said, caused him to have dangerous drop seizures. Tegretol initially stopped the 10 second seizures, but made him have more frequent 1-second seizures. Later, when he took it again after being off it for 6 months, it made him have stronger 10 second seizures. Clobozam made him very, very sad. The end of that one was when he cried for a half hour because his sister moved the letter magnets on the fridge! Zonegran made him hallucinate!! The first night he took it he thought he had bugs in his underwear. I will never forget the terrified look in his eyes. So be aware & beware. Another thing I learned: Do not switch out drugs!! My son was on Tegretol (carbamazepine) for 4 years. He was gradually changed over to a Trileptal (oxycarbamazepine). When we realized it was causing the drop seizures, the doctor told us to "switch out" the Trileptal for the Tegretol. He thought that because my son had been on Tegretol for so long & because it was the same milligrams as the Trileptal and because Trileptal is similar to Tegretol in form, that he would be fine. WRONG! Shortly after my son had his 3rd dose, he quickly became dizzy & uncoordinated until he couldnt even walk, he seemed drunk, but then he started vomiting, was unable to respond to me, turned white and his eyes were rolling around in his head!! I had no idea what was wrong and have never been so scared in my life!