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!
Wednesday, June 15, 2011
The Waiting Game
Today we met with our neuro to talk about Oliver's recent weaning of meds and next steps with the diet and seizure treatment. We shared with him that February, March and April were kick ass months for us because of reduced seizure activity and that May and June have not been so great, mainly because of the increase in clusters since fully weaning Vigabatrin. Oliver had a 25 minute very intense cluster yesterday that stopped about 5 minutes after his rescue med was given at school. Scary and it really knocked him out for the rest of the evening :(
However, because the seizures haven't increased too much, the neuro believes there isn't any reason to medicate right now. If we had gone from 3 clusters per month to 20 clusters per month, we might consider adding a medication or going back on his previous Vigab dose. But since we went from 3 to 6...he still considers Oliver to be doing "very well" and doesn't think it's worth adding a med for a little bit of benefit when it would come with very big side effects. I tend to agree with him but still feel like a quitter for saying it's ok for Oliver to have seizures, as long as he doesn't have too many. Though we can all agree he's shown great alertness and awareness since coming off the medications and I wouldn't trade those smiles for anything!
Oliver was actually awake in his appt and in a good mood for the first half (the 2nd half he spent crying in his stroller while Jason pushed him around the waiting room). The doctor got to see all his new moves (he rolled both ways! he held his head up while lying on his tummy! he smiled! he laughed! he had more spontaneous movement in his arms and legs!).
Unfortunately our most recent EEG report was not ready and in the system waiting for him (we expected it would be as it usually takes a week and the EEG was a week and a day ago) , so now we wait to find out how much worse it looks compared to before when he was having fewer seizures....hopefully we'll find out very soon as it may change our decision to not medicate him at the moment.
Will post back when we know more!
However, because the seizures haven't increased too much, the neuro believes there isn't any reason to medicate right now. If we had gone from 3 clusters per month to 20 clusters per month, we might consider adding a medication or going back on his previous Vigab dose. But since we went from 3 to 6...he still considers Oliver to be doing "very well" and doesn't think it's worth adding a med for a little bit of benefit when it would come with very big side effects. I tend to agree with him but still feel like a quitter for saying it's ok for Oliver to have seizures, as long as he doesn't have too many. Though we can all agree he's shown great alertness and awareness since coming off the medications and I wouldn't trade those smiles for anything!
Oliver was actually awake in his appt and in a good mood for the first half (the 2nd half he spent crying in his stroller while Jason pushed him around the waiting room). The doctor got to see all his new moves (he rolled both ways! he held his head up while lying on his tummy! he smiled! he laughed! he had more spontaneous movement in his arms and legs!).
Unfortunately our most recent EEG report was not ready and in the system waiting for him (we expected it would be as it usually takes a week and the EEG was a week and a day ago) , so now we wait to find out how much worse it looks compared to before when he was having fewer seizures....hopefully we'll find out very soon as it may change our decision to not medicate him at the moment.
Will post back when we know more!
Friday, June 10, 2011
June
We've had a lot going on in the past several weeks, hoping to figure out some answers for Oliver with his GI issues. After lots of phone calls and appts we finally got Oliver in for a gastric emptying study and determined he does have delayed gastric emptying. Basically the food sits in his stomach much longer than it should, and that is why he's never really hungry and also explains a lot of the reflux and GI pain he suffers. The full report is being sent to our GI doctor and then we'll find out next steps when we meet with him again.
Oliver also had an overnight 24 hour VEEG (Video EEG) this week. He did a great job but didn't have many of his staring spells while hooked up so I don't know that we'll actually know if those are seizures or not. He did have several of his small little random jerks and startles so it will be nice to see what types of seizures they are. He didn't have a big cluster while hooked up, which was expected because he never does...and because he was having a really good streak. Prior to today, his last big cluster was May 26th. Unfortunately, today the daycare called and said he was having a bad/long cluster and they were giving him Clonazepam to stop it. But this was his longest streak between big clusters since before he started the diet so that's good.
Oliver has been consistently rolling over just with his upper torso and always to his left side but it's a bit of progress. He also has been smiling a ton lately, which we're very grateful for. his bath chair arrived last night, woohoo! So we're excited to see if that helps him enjoy baths more. it will certainly make bath time easier on all of us.
Oliver also had an overnight 24 hour VEEG (Video EEG) this week. He did a great job but didn't have many of his staring spells while hooked up so I don't know that we'll actually know if those are seizures or not. He did have several of his small little random jerks and startles so it will be nice to see what types of seizures they are. He didn't have a big cluster while hooked up, which was expected because he never does...and because he was having a really good streak. Prior to today, his last big cluster was May 26th. Unfortunately, today the daycare called and said he was having a bad/long cluster and they were giving him Clonazepam to stop it. But this was his longest streak between big clusters since before he started the diet so that's good.
Oliver has been consistently rolling over just with his upper torso and always to his left side but it's a bit of progress. He also has been smiling a ton lately, which we're very grateful for. his bath chair arrived last night, woohoo! So we're excited to see if that helps him enjoy baths more. it will certainly make bath time easier on all of us.
Monday, May 16, 2011
next steps...
Oliver's seizures are increasing. We are holding our breath waiting to see if they will settle back down or if we will have to make a change to his diet or med plan. We finished the Vigabatrin on 4/28 and since then he has had 5 clusters of spasms, numerous random spasms and jerks at night while sleeping, staring spells before going to bed and some convulsing/shaking for 30 seconds or so randomly throughout the day. Aside from the big clusters of spasms, we're not sure if any of the other things are seizures or not but we're assuming they are.
Oliver did so great during his med wean but that last dosage drop seems to have really thrown him for a loop. I don't know if it is his brain protesting the last bit of the drug that we took away or something else. We have our next neuro appt June 15th and will be doing an overnight EEG just before that on June 7th. We will then plan our next step in the fight against seizures.
I got to a comfortable place. I was ok with his 3 clusters per month, happy to be taking steps toward more therapy and feeling confident in everything we could do to make him as happy and comfortable as possible.
Today I feel angry, frustrated and defeated. I feel bitter that I spent the weekend photographing and listing all of the baby gear and toddler gear for sale. Items that Oliver should have used like his exersaucer, bumbo seat and baby carrier that couldn't be used because he lacks head control. Tobin's old push car with a handle that we used to take him out for walks with. Oliver was supposed to be riding around in that this summer. He was also supposed to get Tobin's tricycle now that Tobin has outgrown it. All of those items were sitting in storage, taunting me every time I passed by them. I know it's healthier for me to get them out of the house (and maybe make a few bucks towards Oliver's savings account) but I can't help but think of the life that we imagined we'd live. Instead, we received a parking placard for our rearview mirror, to allow us to park in the handicapped spots when Oliver is in the car with us. It's official, the State of Illinois has granted our son "disabled" status. While the placard will certainly make it easier for us to get him out of the car and into his stroller or wheelchair, it is a concrete reminder that Oliver really isn't developing at all on the physical side. He's over 19 months old now and still can't hold his head up, sit, or roll over. Increased seizures on top of that are just not what we need right now.
We have a few options at this point. We can give his brain more time off the drug to see if it will settle down in the coming weeks, we can go back up to the small nightly dose of Sabril we were on before we lost control or we can increase his diet ratio. There are drawbacks to all of these options and I'm not sure which choice will be the right choice.
Once again I find myself angry that no one has answers for us, not even the experts. Epilepsy is totally unlike any other disorder because the brain is such a mystery. There isn't one solution for every situation. there are dozens, maybe hundreds of options/med combos/diet tweaks etc. It is mentally draining spending your whole day going through every little thing your son has eaten, drank, the time he ate or drank, what time of day he had his supplements, etc etc etc. I am tired. I am over it. There is still a long road ahead of us and some days I just don't have the strength to keep going. It's a lot of pressure as a parent to try and be your child's doctor, nurse, therapist, cheerleader, chef, teacher...when all you want most is to just be his mom.
Oliver did so great during his med wean but that last dosage drop seems to have really thrown him for a loop. I don't know if it is his brain protesting the last bit of the drug that we took away or something else. We have our next neuro appt June 15th and will be doing an overnight EEG just before that on June 7th. We will then plan our next step in the fight against seizures.
I got to a comfortable place. I was ok with his 3 clusters per month, happy to be taking steps toward more therapy and feeling confident in everything we could do to make him as happy and comfortable as possible.
Today I feel angry, frustrated and defeated. I feel bitter that I spent the weekend photographing and listing all of the baby gear and toddler gear for sale. Items that Oliver should have used like his exersaucer, bumbo seat and baby carrier that couldn't be used because he lacks head control. Tobin's old push car with a handle that we used to take him out for walks with. Oliver was supposed to be riding around in that this summer. He was also supposed to get Tobin's tricycle now that Tobin has outgrown it. All of those items were sitting in storage, taunting me every time I passed by them. I know it's healthier for me to get them out of the house (and maybe make a few bucks towards Oliver's savings account) but I can't help but think of the life that we imagined we'd live. Instead, we received a parking placard for our rearview mirror, to allow us to park in the handicapped spots when Oliver is in the car with us. It's official, the State of Illinois has granted our son "disabled" status. While the placard will certainly make it easier for us to get him out of the car and into his stroller or wheelchair, it is a concrete reminder that Oliver really isn't developing at all on the physical side. He's over 19 months old now and still can't hold his head up, sit, or roll over. Increased seizures on top of that are just not what we need right now.
We have a few options at this point. We can give his brain more time off the drug to see if it will settle down in the coming weeks, we can go back up to the small nightly dose of Sabril we were on before we lost control or we can increase his diet ratio. There are drawbacks to all of these options and I'm not sure which choice will be the right choice.
Once again I find myself angry that no one has answers for us, not even the experts. Epilepsy is totally unlike any other disorder because the brain is such a mystery. There isn't one solution for every situation. there are dozens, maybe hundreds of options/med combos/diet tweaks etc. It is mentally draining spending your whole day going through every little thing your son has eaten, drank, the time he ate or drank, what time of day he had his supplements, etc etc etc. I am tired. I am over it. There is still a long road ahead of us and some days I just don't have the strength to keep going. It's a lot of pressure as a parent to try and be your child's doctor, nurse, therapist, cheerleader, chef, teacher...when all you want most is to just be his mom.
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