Friday, May 28, 2010
Thursday, May 27, 2010
Ben's EEG Results
Well, it's complicated! A lot has happened since Ben's hospital stay last week. Let me give you the rundown:
Wednesday: We catch a seizure on the EEG during the night. It is an awful seizure and Ben ends up crying inconsolably afterwards and then while the leads are being removed. I've never seen him cry like that. Nana and I are both almost in tears ourselves.
Thursday: We get the bad news from Ben's neurologist, Dr. Sullivan, that Ben's brain is showing abnormal spikes during sleep - actually, during the period before the seizure. Dr. Sullivan strongly recommends starting ACTH injections. ACTH is a steroid, and is used to treat this abnormal brain activity that babies sometimes develop in the presence of seizures. It is incredibly hard on a baby's body, and requires almost twice the adult dose. No one understands why steroid treatment can sometimes result in normalizing brain activity. We had been through a milder version of this treatment back in November. That time, Ben had no seizures during the course of steroid treatment. But the day after the treatment ended, the first day off of steroids, he started seizing again. The steroids led to sleeplessness (Ben was sleeping only 3-5 hours a night), constipation, weight gain and bloating. I cry thinking that he will have to go through all of this yet again. He is just now starting to get back on a regular schedule after the ketogenic diet. He's been subjected to treatment after treatment since he was 3.5 months old and all of these treatment have put him through the ringer in one way or another. They disrupt his entire body's functioning. They screw up his digestive system, his sleep cycles, his appetite, his liver and kidney functions. I am dreading what a month-long course of daily steroid injections will do to his overall well-being, and am wondering if it is really worth it. Ben does not show this abnormal brain activity during his awake time, or even during all of his sleep time. It's just in the period leading up to a seizure.
Saturday: We see Dr. Liu, Ben's acupuncturist. His view of Ben's seizures is that they are an indication that the underdeveloped part of Ben's brain is continuing to develop and make new connections. He tells me not to worry, that he can tell that Ben is getting better, and that we just need to give it time. Time without drugs. He thinks that steroids are the very worst thing we could do to Ben right now. They deplete the body's energy stores and lead to decreased kidney and liver function. Ben needs all of his organs to be as healthy as possible right now in order to give all of his energy to developing the affected areas of his brain. He predicts that Ben will not have seizures while on the steroids but that they will return as soon as the steroids end - which is exactly what happened last time Ben was on steroids.
Monday: I ask Dr. Sullivan if there is anything else we can do besides ACTH treatment. I tell him that I do not want to do this to Ben. He listens and understands, and says that we need to do something. Dr. Sullivan emphasizes that this abnormal brain activity can result in a plateau-ing of Ben's development. He says it is in Ben's best interest to treat it as soon as possible. He gives me another option: Klonipin (a Valium-like drug) for a week and then recheck his EEG. We agree to this course of treatment. Dr. Sullivan has just written a chapter on Infantile Spasms (these are seizures in babies that are accompanied by abnormal brain activity even when the brain isn't actively seizing). I ask him if I can read this chapter to learn more about it.
I start Ben on klonipin.
Wednesday: We go back to see Dr. Liu. I tell him that we did not start steroids. But I also have to tell him that we did start another drug - klonipin. He asks when Ben last had a seizure. I say, Thursday. "And you started the additional drug on Monday? Why?" I tell him that Dr. Sullivan thinks that the abnormal brain activity during a non-seizure period is detrimental to Ben's development. Dr. Liu says Ben doesn't need drugs. They will interfere with his brain's ability to heal itself and make the right connections. He says that Chinese Medicine has been treating seizures for 5000 years. I ask him if he treats all seizures the same. He says no. He can tell what's going on with Ben based on taking his pulse and feeling his skull. By the way, he could tell from feeling Ben's skull where his brain was malformed and it matched the MRI that I saw. He could tell that the right side was more severly affected than the left (that also matches the MRI). He can tell that Ben's skull is filling out above the affected brain areas. I know this sounds crazy. I told him that I've been trained as a neuroscientist and that I know this western, reductionist way of thinking so well. I want to believe him but I need to learn more about acupuncture. He smiles and says he understands. He refers me to a book called, The Web That Has No Weaver: Understanding Chinese Medicine. He is very calming and reassuring. I ask him what his success rate with seizures has been. He says, "Very good". But he doesn't give me numbers.
These two ways of thinking about Ben's seizures are so different. In one case, his seizures are seen as a symptom of a malformed brain. Dr. Sullivan wants to stop the seizures completely, that's his stated goal. He is reasonable about weighing the benefits of complete seizure control versus the side effects of the drugs/treatments. But he is a pediatric epileptologist and his main focus is seizure control. In the other case, Ben's seizures are seen as the brain's attempts to heal itself. Dr. Liu sees Ben's brain as underdeveloped (not malformed), and sees the seizures as an indication that his brain is continuing to develop and form the right connections. I would bet that he believes that the structure of Ben's brain will change, if allowed. So, here I am. In the middle of these very opposing views of Ben's seizures and brain. I do not feel qualified to make the call. I just want to do what's best for Ben. I wish I knew. I wish I had a crystal ball that would tell me which course to follow. The stakes are so high.
Right now it is 10:30am on Thursday. Ben hasn't had a seizure in 6 days and 11.5 hours. That's the great news! If this keeps up, then maybe I won't have to make the call. Fingers crossed.
Wednesday: We catch a seizure on the EEG during the night. It is an awful seizure and Ben ends up crying inconsolably afterwards and then while the leads are being removed. I've never seen him cry like that. Nana and I are both almost in tears ourselves.
Thursday: We get the bad news from Ben's neurologist, Dr. Sullivan, that Ben's brain is showing abnormal spikes during sleep - actually, during the period before the seizure. Dr. Sullivan strongly recommends starting ACTH injections. ACTH is a steroid, and is used to treat this abnormal brain activity that babies sometimes develop in the presence of seizures. It is incredibly hard on a baby's body, and requires almost twice the adult dose. No one understands why steroid treatment can sometimes result in normalizing brain activity. We had been through a milder version of this treatment back in November. That time, Ben had no seizures during the course of steroid treatment. But the day after the treatment ended, the first day off of steroids, he started seizing again. The steroids led to sleeplessness (Ben was sleeping only 3-5 hours a night), constipation, weight gain and bloating. I cry thinking that he will have to go through all of this yet again. He is just now starting to get back on a regular schedule after the ketogenic diet. He's been subjected to treatment after treatment since he was 3.5 months old and all of these treatment have put him through the ringer in one way or another. They disrupt his entire body's functioning. They screw up his digestive system, his sleep cycles, his appetite, his liver and kidney functions. I am dreading what a month-long course of daily steroid injections will do to his overall well-being, and am wondering if it is really worth it. Ben does not show this abnormal brain activity during his awake time, or even during all of his sleep time. It's just in the period leading up to a seizure.
Saturday: We see Dr. Liu, Ben's acupuncturist. His view of Ben's seizures is that they are an indication that the underdeveloped part of Ben's brain is continuing to develop and make new connections. He tells me not to worry, that he can tell that Ben is getting better, and that we just need to give it time. Time without drugs. He thinks that steroids are the very worst thing we could do to Ben right now. They deplete the body's energy stores and lead to decreased kidney and liver function. Ben needs all of his organs to be as healthy as possible right now in order to give all of his energy to developing the affected areas of his brain. He predicts that Ben will not have seizures while on the steroids but that they will return as soon as the steroids end - which is exactly what happened last time Ben was on steroids.
Monday: I ask Dr. Sullivan if there is anything else we can do besides ACTH treatment. I tell him that I do not want to do this to Ben. He listens and understands, and says that we need to do something. Dr. Sullivan emphasizes that this abnormal brain activity can result in a plateau-ing of Ben's development. He says it is in Ben's best interest to treat it as soon as possible. He gives me another option: Klonipin (a Valium-like drug) for a week and then recheck his EEG. We agree to this course of treatment. Dr. Sullivan has just written a chapter on Infantile Spasms (these are seizures in babies that are accompanied by abnormal brain activity even when the brain isn't actively seizing). I ask him if I can read this chapter to learn more about it.
I start Ben on klonipin.
Wednesday: We go back to see Dr. Liu. I tell him that we did not start steroids. But I also have to tell him that we did start another drug - klonipin. He asks when Ben last had a seizure. I say, Thursday. "And you started the additional drug on Monday? Why?" I tell him that Dr. Sullivan thinks that the abnormal brain activity during a non-seizure period is detrimental to Ben's development. Dr. Liu says Ben doesn't need drugs. They will interfere with his brain's ability to heal itself and make the right connections. He says that Chinese Medicine has been treating seizures for 5000 years. I ask him if he treats all seizures the same. He says no. He can tell what's going on with Ben based on taking his pulse and feeling his skull. By the way, he could tell from feeling Ben's skull where his brain was malformed and it matched the MRI that I saw. He could tell that the right side was more severly affected than the left (that also matches the MRI). He can tell that Ben's skull is filling out above the affected brain areas. I know this sounds crazy. I told him that I've been trained as a neuroscientist and that I know this western, reductionist way of thinking so well. I want to believe him but I need to learn more about acupuncture. He smiles and says he understands. He refers me to a book called, The Web That Has No Weaver: Understanding Chinese Medicine. He is very calming and reassuring. I ask him what his success rate with seizures has been. He says, "Very good". But he doesn't give me numbers.
These two ways of thinking about Ben's seizures are so different. In one case, his seizures are seen as a symptom of a malformed brain. Dr. Sullivan wants to stop the seizures completely, that's his stated goal. He is reasonable about weighing the benefits of complete seizure control versus the side effects of the drugs/treatments. But he is a pediatric epileptologist and his main focus is seizure control. In the other case, Ben's seizures are seen as the brain's attempts to heal itself. Dr. Liu sees Ben's brain as underdeveloped (not malformed), and sees the seizures as an indication that his brain is continuing to develop and form the right connections. I would bet that he believes that the structure of Ben's brain will change, if allowed. So, here I am. In the middle of these very opposing views of Ben's seizures and brain. I do not feel qualified to make the call. I just want to do what's best for Ben. I wish I knew. I wish I had a crystal ball that would tell me which course to follow. The stakes are so high.
Right now it is 10:30am on Thursday. Ben hasn't had a seizure in 6 days and 11.5 hours. That's the great news! If this keeps up, then maybe I won't have to make the call. Fingers crossed.
Wednesday, May 19, 2010
Catching a seizure at the hospital
We have checked into the hospital for EEG monitoring of Ben's brain activity. His neurologist would like to get some information on the type of seizure that Ben is having right now, and this information will help us decide which course of treatment to pursue next. This is our third hospital stay, and though we are old hats at it, we still have a hard time on the pediatric floor. It is always sad to see sick babies and children - and to be here ourselves. It is not a good feeling. Thankfully, uncle Brac and Nana stopped by to see us and cheer us up!! And, of course, we have our Captain chauffering us to and fro. What would we do without our family? We will not be giving him his evening dose of anti-seizure medication so that our chances of having a seizure tonight increase. So far the good news is that Ben's brain activity, while awake, looks completely normal. He does have some abnormal spikes during sleep but they are only mildly concerning, unless his seizing brain looks like he's having spasms. We will keep you posted!Friday, May 7, 2010
Happy Birthday Ben!
Ben started a new playgroup this week and they celebrated his birthday with us. This is a wonderful playgroup run by some fantastic therapists at the Child Development Center here in San Francisco. Ben loved it! Seeing these pictures made him look so grown up to me. He loved watching the other kids - he talked the whole time at that table. He explored colored yoghurt with his hands, listened to songs during circle time and even ate corn chowder at snack time!
Wednesday, May 5, 2010
Seizure Update
Ben had another seizure last night and it is truly heartbreaking. He's aware of when it starts now and sobs. It's the worst position a parent can be put into - not being able to help your sobbing child. We have been decreasing his topamax - the only medication he's on - to see if he really needs to be on the very high dose he's on. We initiated that decrease with his doctor after hearing from an adult who has taken topamax that it made him feel "stoned". Not a great medication for a developing brain to be on, eh? So far he has tolerated a 33% decrease really well. In the last 4 days, he's only had one seizure. That's great news!
Monday, May 3, 2010
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