Thursday I got a call form the neurologist's office. Geri's EEG results are back, and they show "mild epileptiform activity" during sleep. Translation - she has some mild form of epilepsy. That was, in fact, a seizure. She will, in all likelihood, have another in the future.
Of course, this put us into a discussion of treatment. Although the MRI has not been taken yet, the docs thought the results of this test warranted treatment at this time. The nurse informed me that they want to put her on a drug called Keppra. "It's what we're using for most kids now, "she informed me. "It's very well tolerated, and it's most common side effects are aggression, irritability, and anxiety."
This is the part where my heart just about stopped in my chest.
Aggression? You mean the only damned problem we DON'T have?? Irritability? The defining characteristic of our daughter at this time? Anxiety??? Her constant view of the world around her right now? You want to make these things WORSE???
"I'm not going to survive this," I remember thinking.
She started telling me that the risk of any of these side effects occurring is really quite low. "Although it is higher in children under 5," she says. "And in kids who already have behavioral problems."
Oh for crying out loud.
I pointed our that this basically describes my daughter and she sort of ignored what I said. She told me that we can give 50mg of vitamin B12 daily to counteract the effects of the drug. She was sure it would all be fine, and if not then we can just take her off it! Simple! Prescription is going out today, titration schedule is in the mail. Have fun!
I should have asked more questions right then, but I was too overwhelmed to even begin. For some reason, this upset me a bunch. Maybe it's because we seem to get a new diagnosis for our daughter every other week, and it gets overwhelming because I manage it all. Maybe it's because she also informed me that geri has "diffuse slowing" of her brain waves that could indicate permanent delays and retardation. Maybe I just need more sleep. I hung up the phone and cried the whole time I was trying to put Geri down for her nap.
Nick and I talked about the diagnosis and the planned drug, and he shared my apprehension. I was google searching like a madman, and finding no real information about the prevalence of what some forums called "Keppra rage." I was researching the B12, researching seizures... and feeling overwhelmed and confused. I put a call into Geri's pediatrician for advice and help. Could I have called the neurologist? Sure, but the problem, as I saw it, was that she doesn't know my daughter. She pooh-poohed my concerns that Geri carries all the risk factors for the side effects because she only ever met my daughter for less than an hour in her office. Dr. Kim knows my daughter better, and I wanted his insight.
While I was waiting to talk to him, I did as much research as I could. I found some interesting stuff about the use of vitamins B6 and B12 for treating anxiety. I saw some interesting info about magnesium deficiency being a possible underlying cause of seizures. There was a bit about B12 and magnesium for autism. Some friends recommended a ketogenic diet. My head was swimming. I felt almost certain that we would not be using the Keppra. I was way too scared, and not sure that her seizures were bad enough to use it.
In the end, when I talked to Dr. Kim, he answered my questions far better than the neurologist's nurse had. He reassured me that Keppra is very safe, and that he has patients with autism and Down's syndrome and other conditions that take it and are perfectly fine. He let me know that any side effects would leave with the drug, no permanent damage. He agreed that Geri's condition is mild, so mild that it's reasonable to question the validity of using any medication at this point. We could just wait and see.
But at the same time, he wanted me to be very clear that seizures are damaging to the brain. Untreated epilepsy often gets worse over time, and can turn into status epilepticus - a constant seizure that can be deadly. There's also the possibility of SUDEP, or SUdden Death in EPilepsy. It's very rare, but it happens primarily in the case of untreated epileptics. There is a risk of injury during the seizures, and no telling how severe the next one would be. He pointed out that, although her EEG was mildly abnormal, she will definitely have another seizure in the future. It's not a question of "if" so much as "when" and "how bad." He also mentioned that there could be additional low-level abnormal impulses going on for her more frequently. They may present as staring spells or tics, perhaps so brief and benign as to be totally unnoticed. This low-level behavior could cause damage over time, and could interfere with mood and cognition.
It was a good talk, even if the phone did die towards the end of it!
He stated that he agrees that it's a tough call, that it's good we're trying to make it knowledgeably, and that it wouldn't be unreasonable to wait a while before starting the meds.
We decided to start them, but we want to slow-roll her titration schedule so we have more time to watch for side effects as we increase the dose. Instead of increasing weekly, we'd rather go every two weeks. I still need to notify the neurologist. We also started the accompanying B12 dose.
This was a really hard decision for us, one I've been agonizing over for the past few days and am still a bit worried over now. I don't think there's any way I could make this decision and feel totally happy with my choice. If we medicate, she could have those side effects. If we don't, she could worsen and maybe even have a fatal episode. I'd rather she be cranky than dead, those being the worst-case scenario for each decision. It's more likely she gets cranky, but we can just take her off the Keppra and try something else if that is the case. There's no exit strategy for dead.
So there you have it, the thought process of a mom trying to decide the best medical care for her kid. My biggest lesson learned? Don't believe everything you read on the internet, and don't feel rushed in your decision making (unless there's a good reason.) It's okay that we took a few days to make up our minds. Also, use your whole team. Contact the pediatrician if a specialist tells you something you aren't sure of. Talk to other docs if you don't feel comfortable with the answers you're getting.
And cut yourself some slack if you don't have the presence of mind to ask all the right questions immediately after getting the bad news. You have every right to take some time to process, mentally and emotionally, before asking the right questions.
Sigh... I'm just hoping this gets better instead of worse. I really am. My stress level is very high right now. If her behavior worsens, I think I might go off the deep end. I already snapped a bit tonight. I don't need any of the kids to get worse!
I think I'm going to self-medicate... with chocolate.