Seizure Update

We had a follow up appointment two weeks ago with Dr. Patel, his new Neurologist, to see how he was doing with the increase of Keppra and decrease of Topamax. We hadn't seen a change in the seizures at that point, he continued to have 3-5 per week, even with the increase. He also still seemed very sedated. It was clear he didn't have the energy he usually had and would sit and hang his head almost all day long. I told Dr. Patel I thought it was the Topamax, because he began acting that way when the nurse practitioner we used to see kept increasing it. Despite my asking her not to and pushing to have the Keppra increased.

Here's the story behind why I wanted her to try increasing the Keppra, NOT the Topamax, in the first place. When Truitt was in the NICU and was having seizures right after birth, they put him on Phenobarb. It worked for a few days and when the seizures came back, they added Keppra and he never had another seizure. So it worked great for him from day one. Then, when he was 6 months old and started having what we thought were seizures, the nurse practitioner added Topamax over the phone and "assumed" it worked. Well an EEG showed those weren't seizures, and only muscle spasms. So, yes, we could all agree Topamax worked for his muscle spams. Not necessarily seizures!!

So back to where I started, the whole reason I fought for a new Neurologist is because our old Neurologist always scheduled us with his nurse practitioner. Who I wasn't fond of and who also didn't listen to my concerns and my input about MY son and what meds I felt worked best for him. I understand the decision wasn't mine, but I did know what I was talking about. Instead of listening to me, she increased the Topamax. Again. And again. Until our son was as sleepy as a lion. Until I, my friends, was furious. I had it. He was on such a high dose of Topamax, that insurance was denying that dose for a child, and then...SHE INCREASED IT AGAIN!! Mind you, it still wasn't doing a darn thing.

So, that is where our lovely new Neurologist comes in. He increased the Keppra the very first time we met him, and 100% agreed with me that there was never any evidence that showed the Topamax worked for Truitt's seizures, since it was added when he was seizure free. Thank you! Also he wanted to decrease the Topamax because he was unhappy with how high of a dose he was on. Ughhh, shot in my heart! He was telling me everything I was feeling, and everything I tried to do and not do. I knew I didn't trust that nurse practitioner. And he was reminding me why.

Truitt was up to 100mg of Topamax twice a day. Dr. Patel, first decreased it to 75mg, then decreased it one month later to 50mg twice a day. And guess what? Truitt went two whole weeks without one single seizure!!!!! Apparently the high dose of Topamax was not helping his seizures, but possibly making them worse! Best of all, Truitt is much more alert and back to himself again. Seeing the happy, squealing, kicking and loud little boy again makes me realize the fight for a new Neurologist paid off. And, I can't thank him enough for being a fantastic doctor.


Truitt did have one seizure a few days ago, after the two week stretch. But, he missed half of his dose of Keppra the night before, didn't get enough sleep, and was in pain again from more constipation :( So I'm gonna go ahead and assume that it was caused by all of the above, and remain hopeful that his new med cocktail is working!!!