Well we trialed Reglan for almost a full month and decided to take Oliver off the med. After a great first week he ended up eating less, being fussy more and having long bouts of inconsolable crying. He's still not eating great OFF the Reglan but he is MUCH more happy, comfortable and able to enjoy life. He has had 7 clusters of seizures so far in July, and we're not pleased with that number but we're hoping it's because of the Reglan and that things should settle down soon. If not, it could be the decreased calories because he hardly eats, the higher ketones we've been seeing, or something else entirely. Back to the guessing game!
Thursday, July 28, 2011
Saturday, July 16, 2011
A night in the life of Epilepsy
2:50 am: I hear a scream coming from the family room, where Oliver sleeps on the couch. Did I imagine it or is he having a seizure? I wake Jason and ask him if he heard anything. He didn't. A few seconds later I hear it again. We both jump out of bed and run to the family room where Oliver lays with his right arm stiff , convulsing.
2:51 am: I scoop Oliver into my arms and whisper "I"m sorry". I repeat this over and over again for the next five minutes. What am I sorry for? That he's having a seizure. That he was awakened from a peaceful sleep by a seizure. That I can't fine tune the diet well enough to stop the seizures. That doctors don't know which meds, if any, would help our son. Most of all, I'm sorry that I have a gene in my body that's been passed down through generations and generations resulting in Oliver having CDG. Isn't that silly? I had no idea, I had no control over this. But if Jason and I had somehow known we were carriers and that our children might be affected, well, Oliver might not be here to suffer like this.
2:56 am: I look at Jason and tell him "I'm really scared, he's been non stop shaking for over 7 minutes now. Get the Clonazepam".
2:58 am: Jason returns with Oliver's "rescue med" which is really just a benzo that his body is fairly used to and will likely help calm his brain but take 20 minutes to do so, it's our best bet at the moment though, to give him some relief.
3:00 am: Oliver is still having spasms , shaking in between. With each spasm he yelps like a wounded animal and lets out a little cry. Whoever says seizures don't hurt our kids has obviously not sat with Oliver in their arms while he seizes.
3:03 am: Oliver is still shaking but the spasms are smaller and getting further apart. I'm still in tears, sobbing and wondering how I'm supposed to do this for the next 10-20-30 years. I start apologizing to Oliver again. For things beyond my control, and things I think I should be able to control. I glance into my bedroom to make sure Tobin is still asleep and has not been disturbed by his brother's screams. Tobin is still sleeping on the air mattress on our floor most nights. He says he doesn't like to sleep upstairs in his room alone while we are downstairs because he gets scared, but I think it's really his way to be close to us since we spend so much of our time taking care of his brother.
3:10 am Oliver is still shaking and I contemplate calling an ambulance. With this new diagnosis of LGS I don't know what the protocol is. Wait it out or call for help? Then I think they probably wouldn't be able to stop the seizures any sooner. So I wait.
3:20 am: Oliver's spasms are few and far between and the general shaking seems to have subsided. He looks incredibly exhausted and sleepy. I hand him off to Jason to blow my nose and get a drink of water. My throat is raw from crying and my eyes are bloodshot. I look at myself in the mirror and think I've aged 3 years in the past 30 minutes.
3:25 am: Jason lays Oliver down to change his diaper. Oliver rolls to his left side which is his signal that he wants to go to sleep. Every 30 seconds another spasm rocks his body and he jerks awake, then settles back down.
3:30 am: Oliver's spasms seem to be gone and he is sleeping again. I notice the cat is almost out of cat food so I fill her bowl. I put away some clothes I had folded earlier in the evening. It's amazing how much our lives just "snap back to normal" once the seizure passes. Jason and I talk about the seizure Oliver just had and how it compared to the other ones we've had this month. We wonder if it's from the Reglan we started a few weeks back. Jason says "I hope it is, because the alternative is that his seizures are increasing/progressing because of the LGS".
3:35 am: We turn off the lights and crawl back into bed.
3:50 am: Tobin wakes up crying and asks to sleep in our bed with us. As he crawls in I grab him tightly and apologize to him as well. He asks "what for?". I tell him: "For everything".
2:51 am: I scoop Oliver into my arms and whisper "I"m sorry". I repeat this over and over again for the next five minutes. What am I sorry for? That he's having a seizure. That he was awakened from a peaceful sleep by a seizure. That I can't fine tune the diet well enough to stop the seizures. That doctors don't know which meds, if any, would help our son. Most of all, I'm sorry that I have a gene in my body that's been passed down through generations and generations resulting in Oliver having CDG. Isn't that silly? I had no idea, I had no control over this. But if Jason and I had somehow known we were carriers and that our children might be affected, well, Oliver might not be here to suffer like this.
2:56 am: I look at Jason and tell him "I'm really scared, he's been non stop shaking for over 7 minutes now. Get the Clonazepam".
2:58 am: Jason returns with Oliver's "rescue med" which is really just a benzo that his body is fairly used to and will likely help calm his brain but take 20 minutes to do so, it's our best bet at the moment though, to give him some relief.
3:00 am: Oliver is still having spasms , shaking in between. With each spasm he yelps like a wounded animal and lets out a little cry. Whoever says seizures don't hurt our kids has obviously not sat with Oliver in their arms while he seizes.
3:03 am: Oliver is still shaking but the spasms are smaller and getting further apart. I'm still in tears, sobbing and wondering how I'm supposed to do this for the next 10-20-30 years. I start apologizing to Oliver again. For things beyond my control, and things I think I should be able to control. I glance into my bedroom to make sure Tobin is still asleep and has not been disturbed by his brother's screams. Tobin is still sleeping on the air mattress on our floor most nights. He says he doesn't like to sleep upstairs in his room alone while we are downstairs because he gets scared, but I think it's really his way to be close to us since we spend so much of our time taking care of his brother.
3:10 am Oliver is still shaking and I contemplate calling an ambulance. With this new diagnosis of LGS I don't know what the protocol is. Wait it out or call for help? Then I think they probably wouldn't be able to stop the seizures any sooner. So I wait.
3:20 am: Oliver's spasms are few and far between and the general shaking seems to have subsided. He looks incredibly exhausted and sleepy. I hand him off to Jason to blow my nose and get a drink of water. My throat is raw from crying and my eyes are bloodshot. I look at myself in the mirror and think I've aged 3 years in the past 30 minutes.
3:25 am: Jason lays Oliver down to change his diaper. Oliver rolls to his left side which is his signal that he wants to go to sleep. Every 30 seconds another spasm rocks his body and he jerks awake, then settles back down.
3:30 am: Oliver's spasms seem to be gone and he is sleeping again. I notice the cat is almost out of cat food so I fill her bowl. I put away some clothes I had folded earlier in the evening. It's amazing how much our lives just "snap back to normal" once the seizure passes. Jason and I talk about the seizure Oliver just had and how it compared to the other ones we've had this month. We wonder if it's from the Reglan we started a few weeks back. Jason says "I hope it is, because the alternative is that his seizures are increasing/progressing because of the LGS".
3:35 am: We turn off the lights and crawl back into bed.
3:50 am: Tobin wakes up crying and asks to sleep in our bed with us. As he crawls in I grab him tightly and apologize to him as well. He asks "what for?". I tell him: "For everything".
Thursday, July 14, 2011
LGS
After recently talking with our neurologist's office, we learned that Oliver's seizures and EEG pattern have progressed from Infantile Spasms with hypsarrthmia pattern to a slow spike and wave pattern consistent with Lennox Gastaut Syndrome (LGS). LGS is a devastating childhood epilepsy that can continue into the teen and adult years. Seizures come in many forms, can be hard to control and the constant background chaos in the brain leads to severe learning and developmental disabilities.
When Oliver first developed infantile spasms we were told he might never have another seizure disorder beyond Infantile Spasms, or they may progress into other seizure types/seizure disorders. At that moment, we had to hold on to the hope that our battle with IS would someday end and we would never see another seizure again. When Oliver was diagnosed with CDG, we were told he would likely always have seizures and that it was much more likely that his IS would be hard to control. IS that is uncontrolled generally turns into another seizure type down the road.
We started the ketogenic diet when Oliver was 11 months old, hoping that by the time he reached the age where IS turns into other seizure types (18-36 months usually), we would have things well under control with the diet and thus avoid other seizures types. As we went on with the diet, seeing improvements but not seizure freedom I began to feel the clock ticking faster and faster...against us. When we went in for our most recent EEG I had a feeling we'd get some bad news at the outcome. Somehow the "mommy intuition" never fails me even though outwardly I am hopeful and optimistic. I suspected all along, however, that some day we'd hear the words "LGS" in relation to Oliver's EEG.
So now we move forward, knowing that our son has just been given a life sentence for seizures. No matter how much we can help him to have fewer seizure episodes, he'll always have them. This chaotic brain pattern which can be worse than hypsarrthmia, will stick with him for a long time making every thing in his life that much more of a struggle. He's still our little guy and we'll continue to do every thing in our power to help keep him comfortable. And now that he's been given a pretty grim prognosis it means that each little inchstone he achieves will be that much more of a victory.
To read more about LGS: Click Here
When Oliver first developed infantile spasms we were told he might never have another seizure disorder beyond Infantile Spasms, or they may progress into other seizure types/seizure disorders. At that moment, we had to hold on to the hope that our battle with IS would someday end and we would never see another seizure again. When Oliver was diagnosed with CDG, we were told he would likely always have seizures and that it was much more likely that his IS would be hard to control. IS that is uncontrolled generally turns into another seizure type down the road.
We started the ketogenic diet when Oliver was 11 months old, hoping that by the time he reached the age where IS turns into other seizure types (18-36 months usually), we would have things well under control with the diet and thus avoid other seizures types. As we went on with the diet, seeing improvements but not seizure freedom I began to feel the clock ticking faster and faster...against us. When we went in for our most recent EEG I had a feeling we'd get some bad news at the outcome. Somehow the "mommy intuition" never fails me even though outwardly I am hopeful and optimistic. I suspected all along, however, that some day we'd hear the words "LGS" in relation to Oliver's EEG.
So now we move forward, knowing that our son has just been given a life sentence for seizures. No matter how much we can help him to have fewer seizure episodes, he'll always have them. This chaotic brain pattern which can be worse than hypsarrthmia, will stick with him for a long time making every thing in his life that much more of a struggle. He's still our little guy and we'll continue to do every thing in our power to help keep him comfortable. And now that he's been given a pretty grim prognosis it means that each little inchstone he achieves will be that much more of a victory.
To read more about LGS: Click Here
Friday, July 1, 2011
June
Oliver did pretty well during the month of June. Back down to 3 big clusters for the month, which is much better than May so we're pretty excited. He did have some questionable seizures, small startles, staring spells and a possible complex partial seizure as well but we're still waiting to hear back about his latest EEG.
We started Reglan for his delayed gastric emptying last Saturday. So far we haven't seen a big difference in his eating or cranky episodes so we're not sure it will work. Luckily he hasn't suffered from any major side effects, so that's good.
He started July out with a bang and had a huge 45 minute seizure this morning that continued well after the administration of his rescue med. We'll see how the rest of the month goes, too early to tell if it's related to starting the Reglan or not.
Developmentally he's made some small strides, or "inchstones" as we like to call them. He has been doing a great job with our speech therapist, Emilie, trying to bring a rattle into his mouth when he's holding it in his hands. It's just the one rattle so far, so we have to go to Kohl's and see if we can find the exact one she brought over. It was so great to see him doing this though! He's also started to vocalize more and seems to be "taking turns" talking with us when he's in a vocal mood. He is just as smiley and cute as ever when he's happy and when he's cranky he gets very sad, but is still adorable.
We have both been very busy at work and Tobin is enjoying summer being here so that he can go to the pool and the beach and get Italian ice down the street!
We started Reglan for his delayed gastric emptying last Saturday. So far we haven't seen a big difference in his eating or cranky episodes so we're not sure it will work. Luckily he hasn't suffered from any major side effects, so that's good.
He started July out with a bang and had a huge 45 minute seizure this morning that continued well after the administration of his rescue med. We'll see how the rest of the month goes, too early to tell if it's related to starting the Reglan or not.
Developmentally he's made some small strides, or "inchstones" as we like to call them. He has been doing a great job with our speech therapist, Emilie, trying to bring a rattle into his mouth when he's holding it in his hands. It's just the one rattle so far, so we have to go to Kohl's and see if we can find the exact one she brought over. It was so great to see him doing this though! He's also started to vocalize more and seems to be "taking turns" talking with us when he's in a vocal mood. He is just as smiley and cute as ever when he's happy and when he's cranky he gets very sad, but is still adorable.
We have both been very busy at work and Tobin is enjoying summer being here so that he can go to the pool and the beach and get Italian ice down the street!
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