Seizure type question

[mamarush]

My son is 9. He was born 7 weeks early due to me developing HELLP syndrome. He's APGAR score at 1 minute was a 1. He was blue and limp. It took them 10 minutes to get a score of 6. At six months he was diagnosed with infantile spasms. We went through the steroid treatment and got those taken care of. I don't remember right off hand how long it was before they started treating him for epilepsy. I know we had to have an EEG and that's when the medications started. He has spastic quad cerebral palsy as well. He is non verbal and non ambulatory.

Paperwork from the neurologist shows a diagnosis of complex partial seizures. This has been the case all these years. His seizures have not improved. We have gone through several EEGs and a couple of MRIs over the years. Last fall he started staring to the right and would never turn left, unless seizing. He developed myoclonus. The doctor asked which medication I would like to drop and I chose the Keppra because it was the one he'd been on the longest and also it was maxed out on the dosage anyway. So we dropped the Keppra and started Onfi. After about three months on Onfi, he was seizure free for two whole months. I thought we'd finally got everything worked out. Then he got sick and the seizures started back. They haven't stopped. Neuro upped his dosage of Onfi. No change.

Now his myoclonus is affecting everything. He's having trouble eating because he jerks so many times a day. It's particularly rough after he has a seizure. We are on week 5 of our change from Onfi to Banzel. No improvement. I had been watching seizure videos on youtube and realized the type of seizures that were listed as complex partial were NOTHING like what my son has. So I searched for more and came upon videos of tonic-clonic. They looked exactly like what my son goes through. Last time we were at the neuro, I talked to his assistant and asked her about it. I even logged onto my youtube account where I had recorded several examples of his seizures and showed her. She tried to explain that yes he did have complex partial and that the partial part is him stiffening and the complex part is the jerking. O...k... Everything I have read is saying complex partial are more unconscious actions like lip smacking or fiddling with clothing. My son doesn't do that. His actions are usually a quick intake of breath and simultaneously turning to the left (which he doesn't ever do) and then repetitive jerking lasting anywhere from a couple of seconds to 2 minutes. We have taken him to the emergency room twice in the past 2 years for seizures lasting longer than 30 minutes.

I guess my question is am I wrong to think the doctor doesn't know what he's talking about? Does my son have tonic-clonic epilepsy? They have never caught a seizure on EEG. The only thing they've ever seen on EEG is spikes in the brain activity while he sleeps. The EEGs usually lasted about an hour to two hours. I am calling the neuro tomorrow because there has not been any improvement in seizure activity since we started the Banzel. Not to mention in the past week there have been four occurrences of him crying inconsolably because the myoclonus is so severe that it keeps him awake.

 

[Nakamova]

Hi mamarush --

The explanation the neuro's assistant gave you is incorrect. "Partial" just means that the seizure activity involves part of the brain rather than spreading to the entire brain. "Complex" refers to the fact that there is some impairment of awareness or consciousness (usually resulting in some of the automatic behaviors like lipsmacking). (In a Simple Partial there is no loss of consciousness or awareness).

What you describe does sound like your son is experiencing a tonic (tensing) phase followed by clonic (convulsing) phase. Most tonic-clonics are what people associate with "classic" epilepsy -- convulsions and loss of consciousness. Does your son lose consciousness during the seizure activity? If he doesn't, that could be part of the confusion. It is possible to have tonic-clonic seizures without loss of consciousness, but it isn't common. Either way, as noted above, the assistant's explanation was wrong.

Seizures types can progress over time. Maybe your son's initial diagnosis may have been complex partial seizures, but they have progressed to tonic-clonics? If so, that should be noted in his medical record, and taken into account when considering his treatment. You should ask to speak to the neurologist directly (not the assistant) to get this cleared up.

Did you get a chance to do so today? Was the neurologist receptive and clear? If not,
and you are unhappy or uncomfortable with the care your son is receiving, you shouldn't hesitate to seek out a second or third opinion from a different neurologist.

I hope you can find a a treatment will help control your son's seizures and provide relief.

 

[mamarush]

Heard back from neuro

I was actually able to get in touch with the neuro office today. Of course it was just the nurse. I called for two reasons.

1. My son is about to start week 6 of our 6 week transfer from Onfi to Banzel. Nothing has changed. Myoclonus is so bad that it wakes him up at night and he doesn't get much rest. He's having trouble eating and drinking because of it. Between October 1st and October 7th he has had 23 visible seizures lasting from 5 seconds to almost 2 minutes.

2. To ask again about the seizure type.

In regards to question 1, the nurse just looked at his records and read that if the Banzel was not effective that the next step was the VNS. "Would you like to get that process started?" is what she asked me. No, not really. That's a completely last resort that I want to consider. Please tell me there is something I can do to alleviate the myoclonus so he can sleep. No real help there.

In regards to question 2, I told her I had been trying to read up on exactly what type he had. Again, referring to his medical record she reads the findings from his most recent EEG (August 2012) and says they recorded generalized spikes on the left side of his brain. Said that his diagnosis according to EEG is complex partial. I told her that they have never actually caught a seizure on EEG, and explained exactly what he does during a seizure. She proceeds to tell me that the clinical presentation of a seizure is not what they go by to diagnose seizure type, that the EEG is what is used. She said he may have different types of seizures, but the epilepsy condition is complex partial. So I asked her if he would be considered complex partial with secondary generalization. I think I blew her mind because she really didn't seem to know what I was talking about and I felt like she was just trying to talk over me.

She said she was going to get with the physician's assistant (the one that told me the improper information about complex partial) and touch base with her. The neurologist is out of the office until Wednesday. We are scheduled to go back on the 23rd.

I can see if maybe he does have complex partial with secondary generalization, but I would just like for his doctor to give me a straight answer so I know EXACTLY what we have been dealing with all these years.

There is an Epilepsy Symposium coming up November 9th in Atlanta. I plan to be there to get as much info as I can, even though it's a four hour drive for me. I need answers. I'm tired of feeling like people see my son as disposable.

 

[Nakamova]

She proceeds to tell me that the clinical presentation of a seizure is not what they go by to diagnose seizure type, that the EEG is what is used. She said he may have different types of seizures, but the epilepsy condition is complex partial.

Wow, this is soooooooooo not right. The EEG is NOT the primary diagnostic tool. It's meant to suggest, supplement, or confirm a diagnosis made on the basis of actual clinical symptoms. In other words, what happens when your son seizes should be considered far more relevant when making a specific epilepsy diagnosis than what shows up on the EEG. Both the nurse and the phys. assistant you've talked to are talking out of their backsides. You and your son deserve better.

 

[mamarush]

update

The nurse called me back again today. Again she says she spoke with the physician assistant and that he does have complex partial. Then said the next step is the vagus nerve stimulator, when do I want to schedule that referral? I told her I would just keep the appointment for the 23rd and decide then. I'm honestly thinking about a second opinion. I was told by my son's occupational therapist today that there is a neurologist in Augusta (2 hour drive) that specializes specifically in seizures. I really want to take my son there, but I'd still have to keep using the current neuro for my son's CP issues. So how would that relationship change when I tell him I want a second opinion? Maybe I should just change all together. I just feel like something's not right, like the VNS is a last resort and I don't want to go that route. I emailed the seizure specialist anyway and asked what I'd need to do to get a second opinion and told him I would email him video of the seizures my son has. Now if he will actually respond to me. I haven't talked it over with my husband yet either. I'm just frustrated with everything right now.

 

[Nakamova]

I agree that you shouldn't consider any "next step" until you are fully comfortable with and confident in the neurologist providing your son's care. Go with your gut, seek out a neurologist who will be clear and up front with you, and consider your concerns about the appropriateness of the VNS.