Still in the first part of a long road, scared.

[Colts mom]

Hi, I am the mom of a precious 11year old boy who had his first tonic clinic seizure at 2. He would have them every time he got sick, sometimes a few of them. When he was six he was diagnosed with epilepsy, the neurologist had him on depakote for two years seizure free. So yeay! Homefree, all a rough memory... Until one day at work, Colt was 9, the school called me and told me that colt was in an ambulance on his way to the hospital. He'd had another seizure and a prety good head injury. Starting us back into a world that I had no idea what was awaiting us. We started the depakote again but it wasn't enough, so we had to add lamictal, still not enough so we had to add the keppra & up the lamictal again. The tonic clinics haven't reared since December 2010, but he can't remember anything from yesterday, he stutters and forces his mouth to form words. He gets the tremors and wow mood swings! The depression is what scares me the most but the defiance and refusal to perform necessary functions can't be overlooked. He weghs 73 lbs and I'm afraid if I hig him too tight I'm going to break him. He seems very emotionally detached most of the time. He's in the 6th grade but reading & writing at 2nd grade level. But an absolute genious as far as manipulation goes. I want to make certain that he learns what he needs in order to have a successful future and the medical expenses involved in this is unbelievable! The neurologist, pharmacy, Psycologist, psychiatrist, the pediatrician, shall I go on? Now the neurologist would like to admitt him into the hospital for a week lowering his meds and run a continuous EEG to see if we can find the cause of all our issues. I would love to, but I am already loosing my home in order to ensure the care that I have been able to secure. I do know that all will end well, but the road sure is scary!

[Nakamova]

Hi Colts mom, welcome to CWE!

Has the neurologist told you what he hopes the continuous EEG will show, and how that might change your son's treatment? It would be worth knowing what the end result of all this might be. Would the meds change? Would he recommend surgery?

I hope you and your son can find some answers. Three meds is a lot for your son to handle. Sometimes the meds can make seizures worse, and as you've seen, the side effects are no picnic. Keppra in particular is known to drastically affect mood, so it may be responsible for the depression and the defiance you son is showing.

If you are having trouble paying for your son's care, there are agencies and resources that can help. This thread has a lot of great info: Resources

Best,
Nakamova

[Colts mom]

Thank you for your input Nakamova,
It takes me alot to get a chance to come here. Yes, the neurologist was hoping to find that they can pinpoint where the seizures are generating from instead of just generalized everywhere in his brain. Opening up options to other medications or even up to surgery.
Unfortunately his behaviors have led us to place him in a program that is designed to work with him for about a year on redirecting the behaviors. However over the last week and a half, he has started having back to back grand malls again even while on all of these meds! He has been ambulanced several times and admitted to the hospital for non stop seizures, as well. Unfortunately he has only been in this program (that is half way across the country from home) for one month and has not yet become acquainted with the pediatric neurologist in the area. And the neurologist that he hasn't yet become acquainted with has left the office for a two week vacation. So, I contacted my pediatric neurologist here at home and unbelievably... She is on vacation! So we have been frantically trying to figure out what to do and of course it is the weekend. I have the phone number to the Epilepsy Foundation Center that is located where he is. I hope that they will have some ideas for me as I am still new to all of the resources and information out here. I am going to now clilck on the resources button that you sent to me! Thanks again and Happy Mothers Day to you or your Mom!

[Nakamova]

I'm sorry, what a stressful way to spend your Mother's Day, or any day for that matter. The pediatric neurologists should have back-ups for you to contact with questions. I hope you are able to reach someone who can help. And it's definitely worth pushing to have your son's treatment/medication re-evaluated if he is having so many seizures. Best of luck to you, and let us know how it goes.

[Colts mom]

So, gratefully I was able to pull together the resources necessary to make it to one of the greatest hospitals in the country to meet up with my son who is now receiving treatment from a team of doctors that are well acquainted with his type of epilepsy. "Intractable epilepsy." I am so grateful to have someone who can head us in the right direction, instead of frantically trying to figure it out. I am learning alot.

[Nakamova]

That's great, it sounds like you're making progress. Keep us posted, and all best to you and your family.