Guest guest Posted May 13, 2004 Report Share Posted May 13, 2004 Hi Barb, Glad Jake is home and you all will hopefully be able to catch up on some sleep. I think it is a conspiracy by the hospital staff to come in the room while you are sleeping. I didn't know Jake was going in, I guess I missed something. Was this planned for some intensive testing, or was it a result of a bad stretch of seizures? I'm glad you are starting to get some answers....sometimes they lead to other questions, too, though! Hopefully you'll have it all figured out soon and Jake can get some relief from the nasty siezures. Take care, Glenna > Jake got home today around 5pm. He did well on Tuesday night and into Wed, with only three very short seizures (15 seconds or less). Yesterday we pulled his morning and evening meds, in order to capture more seizures on tape. Capture we did. He had a drop at 6:30pm, then had 8 more seizures, an assortment of grand mals, drops and the jack-knife seizures between 10:00pm and 2:30am when we finally gave him some Ativan. He seized again at 6am and we gave him a second dose of Ativan, along w/ his Keppra and Depakote from the night before. He was then sedated for a spinal tap. We were done with everything by 1pm today aside from being observed for complications, but we had an exhausted little guy on our hands. He hasn't eaten a full meal all day and has slept much of the afternoon and evening. > > The mitochondrial DNA was negative/normal, which is good, but we are checking into more mitochondrial pathways and also doing more genetic tests. They are restesting the neurotransmitters, also looking at chromosomes, Fragile X, and other stuff which we hadn't done. Most blood and spinal fluid labs will take a month or so to get back. As of now we have neither ruled in or out the mitochondrial disease. All seizures were broad and generalized w/ no obvious focal point, so it looks as if surgery is still not an option. So....that's the news. It was good that we did it, we got a lot accomplished, but we are both tired. Jake handled it all pretty well, and was quite tolerant and content. He only really rebelled when we took his leads off and had to give him a shampoo in bed...THAT he didn't like!!!! > > You'll be amused to know that he spent the better part of two days and nights kissing every nurse who he came into contact with. Even during the spinal and sedation, he was blowing kisses until he finally passed out. He won over a lot of hearts at Children's this week. Interestingly enough, no kisses for any of the doctors (all men). I suppose that's a good thing! > > Barb Swoyer, Jake's mom > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2004 Report Share Posted May 13, 2004 Thanks Barbara for the update. I've been wondering about what you have found out. Keep us updated on what you find out. Hope you guys get some rest. I love the part about the kisses. What a little flirt!!! Precious! Kathy - 's Mom On Thu, 13 May 2004 21:26:19 -0400 " Barbara Swoyer " writes: > Jake got home today around 5pm. He did well on Tuesday night and > into Wed, with only three very short seizures (15 seconds or less). > Yesterday we pulled his morning and evening meds, in order to > capture more seizures on tape. Capture we did. He had a drop at > 6:30pm, then had 8 more seizures, an assortment of grand mals, drops > and the jack-knife seizures between 10:00pm and 2:30am when we > finally gave him some Ativan. He seized again at 6am and we gave > him a second dose of Ativan, along w/ his Keppra and Depakote from > the night before. He was then sedated for a spinal tap. We were > done with everything by 1pm today aside from being observed for > complications, but we had an exhausted little guy on our hands. He > hasn't eaten a full meal all day and has slept much of the afternoon > and evening. > > The mitochondrial DNA was negative/normal, which is good, but we are > checking into more mitochondrial pathways and also doing more > genetic tests. They are restesting the neurotransmitters, also > looking at chromosomes, Fragile X, and other stuff which we hadn't > done. Most blood and spinal fluid labs will take a month or so to > get back. As of now we have neither ruled in or out the > mitochondrial disease. All seizures were broad and generalized w/ > no obvious focal point, so it looks as if surgery is still not an > option. So....that's the news. It was good that we did it, we got > a lot accomplished, but we are both tired. Jake handled it all > pretty well, and was quite tolerant and content. He only really > rebelled when we took his leads off and had to give him a shampoo in > bed...THAT he didn't like!!!! > > You'll be amused to know that he spent the better part of two days > and nights kissing every nurse who he came into contact with. Even > during the spinal and sedation, he was blowing kisses until he > finally passed out. He won over a lot of hearts at Children's this > week. Interestingly enough, no kisses for any of the doctors (all > men). I suppose that's a good thing! > > Barb Swoyer, Jake's mom > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 ((((((((((((((Barb and Jake))))))))) Barbara Swoyer wrote: > Jake got home today around 5pm. He did well on Tuesday night and > into Wed, with only three very short seizures (15 seconds or less). > Yesterday we pulled his morning and evening meds, in order to capture > more seizures on tape. Capture we did. He had a drop at 6:30pm, then > had 8 more seizures, an assortment of grand mals, drops and the > jack-knife seizures between 10:00pm and 2:30am when we finally gave > him some Ativan. He seized again at 6am and we gave him a second dose > of Ativan, along w/ his Keppra and Depakote from the night before. He > was then sedated for a spinal tap. We were done with everything by > 1pm today aside from being observed for complications, but we had an > exhausted little guy on our hands. He hasn't eaten a full meal all > day and has slept much of the afternoon and evening. > > The mitochondrial DNA was negative/normal, which is good, but we are > checking into more mitochondrial pathways and also doing more genetic > tests. They are restesting the neurotransmitters, also looking at > chromosomes, Fragile X, and other stuff which we hadn't done. Most > blood and spinal fluid labs will take a month or so to get back. As > of now we have neither ruled in or out the mitochondrial disease. All > seizures were broad and generalized w/ no obvious focal point, so it > looks as if surgery is still not an option. So....that's the news. > It was good that we did it, we got a lot accomplished, but we are both > tired. Jake handled it all pretty well, and was quite tolerant and > content. He only really rebelled when we took his leads off and had > to give him a shampoo in bed...THAT he didn't like!!!! > > You'll be amused to know that he spent the better part of two days and > nights kissing every nurse who he came into contact with. Even during > the spinal and sedation, he was blowing kisses until he finally passed > out. He won over a lot of hearts at Children's this week. > Interestingly enough, no kisses for any of the doctors (all men). I > suppose that's a good thing! > > Barb Swoyer, Jake's mom > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 Nope, Boston Children's. A planned visit. Barb Fw: Jake is home Jake got home today around 5pm. He did well on Tuesday night and into Wed, with only three very short seizures (15 seconds or less). Yesterday we pulled his morning and evening meds, in order to capture more seizures on tape. Capture we did. He had a drop at 6:30pm, then had 8 more seizures, an assortment of grand mals, drops and the jack-knife seizures between 10:00pm and 2:30am when we finally gave him some Ativan. He seized again at 6am and we gave him a second dose of Ativan, along w/ his Keppra and Depakote from the night before. He was then sedated for a spinal tap. We were done with everything by 1pm today aside from being observed for complications, but we had an exhausted little guy on our hands. He hasn't eaten a full meal all day and has slept much of the afternoon and evening. The mitochondrial DNA was negative/normal, which is good, but we are checking into more mitochondrial pathways and also doing more genetic tests. They are restesting the neurotransmitters, also looking at chromosomes, Fragile X, and other stuff which we hadn't done. Most blood and spinal fluid labs will take a month or so to get back. As of now we have neither ruled in or out the mitochondrial disease. All seizures were broad and generalized w/ no obvious focal point, so it looks as if surgery is still not an option. So....that's the news. It was good that we did it, we got a lot accomplished, but we are both tired. Jake handled it all pretty well, and was quite tolerant and content. He only really rebelled when we took his leads off and had to give him a shampoo in bed...THAT he didn't like!!!! You'll be amused to know that he spent the better part of two days and nights kissing every nurse who he came into contact with. Even during the spinal and sedation, he was blowing kisses until he finally passed out. He won over a lot of hearts at Children's this week. Interestingly enough, no kisses for any of the doctors (all men). I suppose that's a good thing! Barb Swoyer, Jake's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 Glad Jake's home, but sorry about all the complications. No fun. Looks like Nate has some competition for the nurses' affection at Children's. He won't like that ;-) He's got tons of girlfriends there. One calls him her " secret boyfriend. " Meredith > Nope, Boston Children's. A planned visit. > Barb > Fw: Jake is home > > > > Jake got home today around 5pm. He did well on Tuesday night and into > Wed, with only three very short seizures (15 seconds or less). > Yesterday we pulled his morning and evening meds, in order to capture > more seizures on tape. Capture we did. He had a drop at 6:30pm, then > had 8 more seizures, an assortment of grand mals, drops and the > jack-knife seizures between 10:00pm and 2:30am when we finally gave him > some Ativan. He seized again at 6am and we gave him a second dose of > Ativan, along w/ his Keppra and Depakote from the night before. He was > then sedated for a spinal tap. We were done with everything by 1pm > today aside from being observed for complications, but we had an > exhausted little guy on our hands. He hasn't eaten a full meal all day > and has slept much of the afternoon and evening. > > The mitochondrial DNA was negative/normal, which is good, but we are > checking into more mitochondrial pathways and also doing more genetic > tests. They are restesting the neurotransmitters, also looking at > chromosomes, Fragile X, and other stuff which we hadn't done. Most > blood and spinal fluid labs will take a month or so to get back. As of > now we have neither ruled in or out the mitochondrial disease. All > seizures were broad and generalized w/ no obvious focal point, so it > looks as if surgery is still not an option. So....that's the news. It > was good that we did it, we got a lot accomplished, but we are both > tired. Jake handled it all pretty well, and was quite tolerant and > content. He only really rebelled when we took his leads off and had to > give him a shampoo in bed...THAT he didn't like!!!! > > You'll be amused to know that he spent the better part of two days and > nights kissing every nurse who he came into contact with. Even during > the spinal and sedation, he was blowing kisses until he finally passed > out. He won over a lot of hearts at Children's this week. > Interestingly enough, no kisses for any of the doctors (all men). I > suppose that's a good thing! > > Barb Swoyer, Jake's mom > > Quote Link to comment Share on other sites More sharing options...
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