Mere days after my last post, my son had a seizure. Sigh. It completely blindsided us as he'd gone 1.5 years without one. We were at a gross rib fest, it wasn't a hot day, everything was normal and great up until a few minutes before the seizure.
I knew something was up when he refused a french fry. Fries aren't an every day thing for the kids and are NEVER turned down so my guard was up. What kid of mine would refuse a fry? After the fry refusal, I offered him some bread which he slowly started to munch on as his eyes began doing that funky pre-seizure thing. I knew it was go time so I shouted for my husband who came running. Our son started convulsing and I managed to get him out of the stroller and lie him down under a pinic table for some shade. Gawkers ensued. It lasted around 4 minutes but felt more like 400 hours. Thankfully this time around I didn't melt into a hot mess of freakout though I was tempted to freakout on the gawkers (PSA to all potential gawkers: this is not appropriate behavior.)
Despite the yuck factor of the traveling rib festival* we quickly summoned the event medics who arrived in a flash with an oxygen tank. Whew. After a little oxygen, my son started breathing again, his lips weren't blue anymore, and the color came back to his face. We later got checked out at the hospital and then sent home with instructions to raise his phenobarbital dose to his previous level. If we hadn't been at this place then we wouldn't have received such prompt attention and it would have been a much more serious situation.
So, it doesn't look like we'll be getting him off the meds anytime soon but we are at about 65% of his original dose which is still less than before and now his new holding dose.
* Yes, they travel from place to place! How do they safely store their food? Where does it even come from? And more importantly, WHY?
Showing posts with label seizures. Show all posts
Showing posts with label seizures. Show all posts
Sunday, June 26, 2011
Monday, June 13, 2011
Weaning..
A few months ago, in consultation with my son's neurologist and developmental pediatrician, we began weaning him off his anti-seizure medication (phenobarbital). For obvious reasons we were very nervous at the prospect of another seizure (tonic-clonic is his signature seizure). My mind often wanders to a slow motion replay of him convulsing, foaming at the mouth, turning blue and stopping breathing. My heart goes silent and it feels like I am witnessing him die, over and over again. Memory can be a terrible thing at times.
So why are we weaning him? Well despite trepidation we're anxious to see how being off the medication affects his development and behaviour (if at all). His last overnight EEG was crystal clear (though perhaps the phenobarb had something to do with that) which is comforting. Either way, we're now at the halfway point, down to 22.5mg/day, and so far there have been no ill effects. We're weaning very slowly, going down 7.5mg per month.
Of course whenever he's sick (like the horrific stomach flu/strep throat combo we all had last month), hungry or overtired, I'm on high alert for seizure activity. Much to my surprise and delight, he has had none. I suspect the true test will be when we enter flu and cold season this fall as he'll be fully weaned by then.
I wonder, do all kids with Creatine Transporter Deficiency have seizures? Is this just a little kid thing that he'll grow out of? Does the creatine/arginine/glycine treatment do anything to control the seizures? I don't know.
So why are we weaning him? Well despite trepidation we're anxious to see how being off the medication affects his development and behaviour (if at all). His last overnight EEG was crystal clear (though perhaps the phenobarb had something to do with that) which is comforting. Either way, we're now at the halfway point, down to 22.5mg/day, and so far there have been no ill effects. We're weaning very slowly, going down 7.5mg per month.
Of course whenever he's sick (like the horrific stomach flu/strep throat combo we all had last month), hungry or overtired, I'm on high alert for seizure activity. Much to my surprise and delight, he has had none. I suspect the true test will be when we enter flu and cold season this fall as he'll be fully weaned by then.
I wonder, do all kids with Creatine Transporter Deficiency have seizures? Is this just a little kid thing that he'll grow out of? Does the creatine/arginine/glycine treatment do anything to control the seizures? I don't know.
Tuesday, June 22, 2010
Relax, they're just fever seizures
The seizures began when he was 13 months old and it completely blindsided us. To see your child turn shades of blue, foam at the mouth and shake uncontrollably while you look on, completely useless, is terrifying. I had no idea what was going on and the doctors told us that it was likely just a febrile seizure. He had 2 more in the emergency room and 3 more after they admitted us, the last one lasted 10 minutes. After running a gamut of tests, including spinal tap and CT scan of his brain, they found nothing and the neurologist labeled the seizures as febrile and discharged us. "Don't worry, they're common in young children, he'll grow out of it".
The seizures came back with a vengeance in December. We had a series in mid-December, then more between Christmas & New Years followed by a 6 minute seizure at home in early January. By then it was agreed that his seizures weren't just infection related and he was put on medication and an MRI was ordered.
The MRI happened in March (thanks, wait lists!) and the results were reviewed with his neurologist. The scan showed some damage to the white matter in his brain, something they usually see with low-weight pre-term babies or with babies who may have been stressed during birth and lost oxygen (which wasn't my son's case). The damage, combined with his delays, led the neurologist to diagnose him with cerebral palsy. I was shocked, I didn't understand what cerebral palsy really was and what it meant for our little boy.
One month later, when our son was 19 months old, we saw the metabolics team at our childrens' hospital. We knew that his MRI/MRS showed an absence of creatine but we didn't know what that meant. Our neurologist at the time said that it was unlikely that he had a creatine deficiency (we've since changed neurologists). After consulting Dr. Google we determined that it wasn't anything to worry about, not something that could happen to us. Creatine deficiencies are very rare, those affected usual have some level of intellectual disability, severe speech & language problems, autistic-like behaviours and so on. There was no way our son had this metabolic disease. Sure, he was a bit behind and didn't have any words but he'd most likely catch up, right? I was absolutely convinced that this meeting would turn out to be nothing.
Imagine my surprise when we were led to a private room where four professionals greeted us and proceeded to tell us that our son had Creatine Transporter Deficiency. I didn't understand how or why he could have this rare metabolic disease and I didn't (and still don't) understand what this means for my child. Will he be a kid who might need extra help in math class or will he be a kid who won't be going to math class? I think I know the answer but since I don't have a crystal ball and don't happen to know of anyone in possession of one (do you?) I'm just going to focus on the here and now.
The seizures came back with a vengeance in December. We had a series in mid-December, then more between Christmas & New Years followed by a 6 minute seizure at home in early January. By then it was agreed that his seizures weren't just infection related and he was put on medication and an MRI was ordered.
The MRI happened in March (thanks, wait lists!) and the results were reviewed with his neurologist. The scan showed some damage to the white matter in his brain, something they usually see with low-weight pre-term babies or with babies who may have been stressed during birth and lost oxygen (which wasn't my son's case). The damage, combined with his delays, led the neurologist to diagnose him with cerebral palsy. I was shocked, I didn't understand what cerebral palsy really was and what it meant for our little boy.
One month later, when our son was 19 months old, we saw the metabolics team at our childrens' hospital. We knew that his MRI/MRS showed an absence of creatine but we didn't know what that meant. Our neurologist at the time said that it was unlikely that he had a creatine deficiency (we've since changed neurologists). After consulting Dr. Google we determined that it wasn't anything to worry about, not something that could happen to us. Creatine deficiencies are very rare, those affected usual have some level of intellectual disability, severe speech & language problems, autistic-like behaviours and so on. There was no way our son had this metabolic disease. Sure, he was a bit behind and didn't have any words but he'd most likely catch up, right? I was absolutely convinced that this meeting would turn out to be nothing.
Imagine my surprise when we were led to a private room where four professionals greeted us and proceeded to tell us that our son had Creatine Transporter Deficiency. I didn't understand how or why he could have this rare metabolic disease and I didn't (and still don't) understand what this means for my child. Will he be a kid who might need extra help in math class or will he be a kid who won't be going to math class? I think I know the answer but since I don't have a crystal ball and don't happen to know of anyone in possession of one (do you?) I'm just going to focus on the here and now.