I had to take Henry for lab work yesterday. He’s been having clusters of seizures and they wanted to test his Topamax levels before increasing the dose on this evil drug, his 9th seizure med, once again. I’m going through the motions because frankly I don’t know what else to do at the moment. A fight is coming with his doctor on Monday, a game plan is formulating, but I’m not there yet… so we went about our way.
The lab is in the same building where Henry used to receive speech therapy and occupational therapy. The receptionists still recognize him and love to see him whenever we come in. If we are really lucky he can see Melissa, his wonderful speech therapist from before he started pre-k. It’s a busy place and there is always a wait. It gives you some time to reflect, I guess. I don’t know why, but it really hits me in the gut every time I go in there. I remember the intense year when I made the drive to that clinic 3x a week and our biggest fear and concern was if Henry would ever talk. I was fighting hard for Henry and I was determined we could overcome this “thing”. I was so worried, but grateful to know we were taking steps in the right direction and doing everything in our power to help Henry find his words.
I couldn’t have imagined back then where we are now. It was a different life in that waiting room two years ago. Who ever thinks it’s going to get worse, much worse? Sometimes I wish I could go back and tell myself to take it easy and say… you need to rest, honey, you have an even bigger fight ahead of you.
This trip to the clinic was even harder because Henry has changed on this most recent medication. Seeing him engaged in his typical routine make these changes more painfully obvious. He wasn’t the usual entertainer and center of attention, chatting up the security officer or flirting with the nurses. He was holding onto my leg with his tongue in his cheek, afraid to leave my side. There was a confusion with the lab paperwork (of course) and so we did even more waiting around. A lot of people were watching Henry, commenting on how cute he was in his plaid shirt and cardigan (which was very true :). This only made him retreat further. Who was this shy boy, I wondered, and where has my Henry gone?
A few minutes later this very nice woman came up to me and said, “Excuse me, I just want to say good job, Mom. I have enjoyed watching your son. He is so well behaved and quiet, I have never seen a child that age with such good behavior. You must be so proud”. I smiled and said thank you. Of course I’m proud, but honestly I wanted to burst into tears. I wanted to say well that’s because my child is essentially sedated. He is on this shitty, mind altering drug that has made him timid, that makes it hard for him to find words that he worked so hard for and therefore often loses his confidence to say much of anything at all. This drug has made him sensitive, scared and he cries at the drop of a hat, it’s essentially robbed him of some of his personality. He can’t sleep at night because he’s tortured with nightmares and nocturnal seizures. The list of side effects goes on. If she had seen him a year ago, heck even two months ago, he would be running around the waiting room touching every magazine and book, taking out every toy, talking to every patient waiting their turn and I can tell you he wouldn’t be using his “inside voice”. I’m embarrassed to say back then I had thoughts where I wished he would calm down a little, not be so fragmented and allover the place, and I wondered why he couldn’t still for just five minutes? And now I look to my left and there he is, sitting quietly, pouring over his book and ducking his head behind me every time someone walks by. He doesn’t go to the playroom although he eyes it shyly. He doesn’t go talk to the receptionist who has been waving at him from across the room. I have to coax him over to the desk where he mutters a quiet “hi” and nothing else. The receptionist wondered where the boy is that couldn’t stop talking last visit. I’m wondering the same thing.
What is the bigger evil, the drugs or the seizures? No one knows. No one can tell me anything. I never thought a year and a half ago we would be trying drug number NINE! My husband controlled his seizures with the first medication he tried. I naively thought that is the way it works. I couldn’t have anticipated this roller coaster of meds, tests and hospital visits. This topamax I complain about, it isn’t the only evil seizure drug out there, but I would consider living with it’s side effects if it actually stopped his seizures! (well Henry is living with them, isn’t he?) I actually believe he’s having a ton of smaller seizures all day long in addition to his bigger ones. He is constantly checking in and out of life. Sometimes stopping mid walk or play and just sitting on the floor and zoning out. He may be hallucinating on this drug as well, which isn’t an unheard of side effect. He is afraid to go to the bathroom or his bedroom by himself even during the day. He asks me at least ten times a day, unprovoked and relating to nothing in the moment, “There’s nothing to be afraid of right, Mommy?” as he looks around. Or he jumps up from bed while reading stories and is completely freaked out saying “Those voices scared me!”. What voices Henry?!
Can you hear my heart breaking?
I’m constantly worried what all of this is doing to my son and if I’m making the right choices for him. How I wish he could describe how he’s feeling, describe his seizures, tell me when he’s about to seize, and tell me what he sees at night when he closes his eyes! This poor boy doesn’t have a say in the matter. It seems he’s been more a lab rat than anything this past eighteen months. I have heavy guilt about this. I carry it and I wonder, what am I doing?? Every test and path we take tends to create more questions than answers. When things seem to get better for a short while, they come out of the gates next time faster, harder…worse.
We changed doctors and hospitals six months ago and now we are apparently at the best of the best for children’s neurology. Aside from one recent comment, I can say I love his neurologist and really feel like she is trying to find an answer, she wants him to be well. But I never would thought that all of these high tech and advanced tests would lead to a bunch of brainiacs scratching their heads. They figure, hey, we will just throw another drug at it and see what happens. Well, I’m not okay with not knowing… not being able to plan, know what to do next, and what to do to make my baby feel well. It goes against every grain of my being, especially in the role of mom. I keep trying to figure everything out and then realize, if the doctors can’t figure it out how would I? Don’t put that pressure on yourself, you are doing everything you can. But then a small voice starts telling me, “you’re his mom, you know him better than anyone else…find the answers!”. I can’t ignore it.
We have an appointment on Monday at Boston Children’s. I’m dreading it. I used to look forward to the appointments because I was eager for answers and hope. I feel like this visit is going to be that awful conversation where they tell you, listen, drugs aren’t working… Henry is refractory and will always have seizures. We can keep slamming with him with more drug increases, hoping by some remote chance that we will find the magic bullet while Henry becomes less and less himself. Or she will recommend the ketogenic diet, which I know she isn’t enthused about in Henry’s case, but it may be a last ditch effort. We’ve already been told he’s not a surgical candidate.
I’ve always looked to these doctors for confidence in their choices for Henry and a feeling of security that they knew what they were doing. Neurologists have to be the smartest of all doctors, right? The brain is so complicated. But it is amazing how much falls back on the parent. Every day is essentially watching and journaling everything. With every appointment or near daily phone call to the doctor I hear: how much did he sleep, eat, drink, poop…any tremors, dizziness, unsteady gait?… is he complaining of headache, has he lost any skills… are his eyes deviating to one side, dilated, is he having blurry vision? How many seizures did he have today, how long was it, what did it look like, what was he doing before, what was he doing after, is this a typical seizure for him? How long was his post ictal?
Then finally it’s my turn for questions. What do we do? How do we fix this? You can almost hear the crickets. They say let’s increase this, decrease that, let’s do more tests. Any results? Any answers? More crickets. That’s what it feels like. Why am I doing so much of the talking?
Well, I’m mentally preparing myself for all I listed above on Monday. Then gearing up for asking once again about VNS, medical marijuana (I learned they aren’t dispensing it, but who is and where can I get it?), and what are our real chances on the ketogenic diet? Is their more genetic testing to be done? Should we do a PET scan? If no, why not??
Plan B, a visit to Dr. Chugani at The Children’s Hospital of Michigan in Detroit. He is supposed to be a rock star in the world of hard to treat epilepsy and infantile spasms. He has a grant for a new kind of PET scan that measures the seratonin levels in the brain, whereas the traditional PET measures glucose. Somehow increases and decreases in these help pin point the “hot spots”, i.e.: where these damn seizures are coming from, and maybe… why? Unfortunately all of Henry’s seizures are different. Sometimes they start focally and quickly generalize. Sometimes they are general and quickly focalize. Sometimes on the left side of the brain. Sometimes on the right. Sometimes the front. Sometimes the back. Dr. Chugani has his work cut out for him.
Henry’s brain lesions still can’t be identified by the oncology team. We were told last visit it could take a few years for a tumor to grow…it takes time. Awesome. Let’s just say we aren’t waiting on pins and needles for gliomas to pop up and say hi. The MRI’s and appointments immediately following at the Dana Farber Cancer Center every six months literally make me want to vomit. Waiting for something to grow in your child’s brain so it can be identified is not fun. Instead we want someone to tell us they are definitely not brain tumors or cancer. But they can’t. Four MRI’s later. Do you see what I mean about no one being able to tell us anything?
Bitter, pissed and exhausted… party of one!
I’m going to bed. I’m sure I will be more positive tomorrow and have my boxing gloves back on. Thanks for reading the longest…post…ever.