Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Hello all. Just wanted to let you know that Lindsey ended her 14 month "big" seizure free run on Tuesday. We traveled up to Mayo to meet with Dr. Whiteman and had a good visit with him. We got home and 10 minutes later, Lindsey went into a status seizure. It came from nowhere. One minute she was walking around giving everyone hugs and kisses hello and the next she was having a horrible seizure. We transported her via ambulance to the local Children's hospital and spent the next 2 1/2 hours trying to get her to stop seizing. Finally after giving her enough ativan, versed, valium and phenobarbitol to knock out a herd of cattle, she stopped. They had to put her on a ventilator as she couldn't keep up with breathing given all of the medication she was given. She did have another seizure later that night but, it was pretty short. She spiked a fever during the night and ended up with an ear infection. Miraculously all of her labs came back normal, even her metabolic labs. So, 3 days later we are finally home. Lindsey is still trying to wake up and get the nasty meds out of her system but, is coming along slowly. has been able to stay seizure free through all of this and was most excited to see her "sissy" today. She dogpiled her when we got home. It was a very sweet sight to see. She really missed her. Darla if you are reading this, we were at Blank Hospital and I was very impressed as a number of the doctors actually knew what a mitochondrial disorder was and even asked me what type she had. You must have trained them well!!! I haven't had time to read my 400+ e-mails and get caught up on the happenings but, continue to keep you all in my thoughts and prayers. Blessings, Kim - Mom to and Lindsey (3) Partial Complex I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Hello all. Just wanted to let you know that Lindsey ended her 14 month "big" seizure free run on Tuesday. We traveled up to Mayo to meet with Dr. Whiteman and had a good visit with him. We got home and 10 minutes later, Lindsey went into a status seizure. It came from nowhere. One minute she was walking around giving everyone hugs and kisses hello and the next she was having a horrible seizure. We transported her via ambulance to the local Children's hospital and spent the next 2 1/2 hours trying to get her to stop seizing. Finally after giving her enough ativan, versed, valium and phenobarbitol to knock out a herd of cattle, she stopped. They had to put her on a ventilator as she couldn't keep up with breathing given all of the medication she was given. She did have another seizure later that night but, it was pretty short. She spiked a fever during the night and ended up with an ear infection. Miraculously all of her labs came back normal, even her metabolic labs. So, 3 days later we are finally home. Lindsey is still trying to wake up and get the nasty meds out of her system but, is coming along slowly. has been able to stay seizure free through all of this and was most excited to see her "sissy" today. She dogpiled her when we got home. It was a very sweet sight to see. She really missed her. Darla if you are reading this, we were at Blank Hospital and I was very impressed as a number of the doctors actually knew what a mitochondrial disorder was and even asked me what type she had. You must have trained them well!!! I haven't had time to read my 400+ e-mails and get caught up on the happenings but, continue to keep you all in my thoughts and prayers. Blessings, Kim - Mom to and Lindsey (3) Partial Complex I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Kim, how scarry, a 2 1/2 hour seizure. I'm glad to hear you are home. Geri-Anne and Wyatt > Hello all. Just wanted to let you know that Lindsey ended her 14 month " big " seizure free run on Tuesday. We traveled up to Mayo to meet with Dr. Whiteman and had a good visit with him. We got home and 10 minutes later, Lindsey went into a status seizure. It came from nowhere. One minute she was walking around giving everyone hugs and kisses hello and the next she was having a horrible seizure. > We transported her via ambulance to the local Children's hospital and spent the next 2 1/2 hours trying to get her to stop seizing. Finally after giving her enough ativan, versed, valium and phenobarbitol to knock out a herd of cattle, she stopped. They had to put her on a ventilator as she couldn't keep up with breathing given all of the medication she was given. She did have another seizure later that night but, it was pretty short. She spiked a fever during the night and ended up with an ear infection. Miraculously all of her labs came back normal, even her metabolic labs. > > So, 3 days later we are finally home. Lindsey is still trying to wake up and get the nasty meds out of her system but, is coming along slowly. has been able to stay seizure free through all of this and was most excited to see her " sissy " today. She dogpiled her when we got home. It was a very sweet sight to see. She really missed her. > > Darla if you are reading this, we were at Blank Hospital and I was very impressed as a number of the doctors actually knew what a mitochondrial disorder was and even asked me what type she had. You must have trained them well!!! > > I haven't had time to read my 400+ e-mails and get caught up on the happenings but, continue to keep you all in my thoughts and prayers. > > Blessings, > Kim - Mom to and Lindsey (3) Partial Complex I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Kim, how scarry, a 2 1/2 hour seizure. I'm glad to hear you are home. Geri-Anne and Wyatt > Hello all. Just wanted to let you know that Lindsey ended her 14 month " big " seizure free run on Tuesday. We traveled up to Mayo to meet with Dr. Whiteman and had a good visit with him. We got home and 10 minutes later, Lindsey went into a status seizure. It came from nowhere. One minute she was walking around giving everyone hugs and kisses hello and the next she was having a horrible seizure. > We transported her via ambulance to the local Children's hospital and spent the next 2 1/2 hours trying to get her to stop seizing. Finally after giving her enough ativan, versed, valium and phenobarbitol to knock out a herd of cattle, she stopped. They had to put her on a ventilator as she couldn't keep up with breathing given all of the medication she was given. She did have another seizure later that night but, it was pretty short. She spiked a fever during the night and ended up with an ear infection. Miraculously all of her labs came back normal, even her metabolic labs. > > So, 3 days later we are finally home. Lindsey is still trying to wake up and get the nasty meds out of her system but, is coming along slowly. has been able to stay seizure free through all of this and was most excited to see her " sissy " today. She dogpiled her when we got home. It was a very sweet sight to see. She really missed her. > > Darla if you are reading this, we were at Blank Hospital and I was very impressed as a number of the doctors actually knew what a mitochondrial disorder was and even asked me what type she had. You must have trained them well!!! > > I haven't had time to read my 400+ e-mails and get caught up on the happenings but, continue to keep you all in my thoughts and prayers. > > Blessings, > Kim - Mom to and Lindsey (3) Partial Complex I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 So I guess it's yippee, and bummer at the same time. But so glad that you had a good experience at the hospital and everything came out ok. Don't you just love those dogpiles? Take care and hope the end is now in site for you. Nerenhausen mom to Leah Kim Novy wrote: Hello all. Just wanted to let you know that Lindsey ended her 14 month "big" seizure free run on Tuesday. We traveled up to Mayo to meet with Dr. Whiteman and had a good visit with him. We got home and 10 minutes later, Lindsey went into a status seizure. It came from nowhere. One minute she was walking around giving everyone hugs and kisses hello and the next she was having a horrible seizure. We transported her via ambulance to the local Children's hospital and spent the next 2 1/2 hours trying to get her to stop seizing. Finally after giving her enough ativan, versed, valium and phenobarbitol to knock out a herd of cattle, she stopped. They had to put her on a ventilator as she couldn't keep up with breathing given all of the medication she was given. She did have another seizure later that night but, it was pretty short. She spiked a fever during the night and ended up with an ear infection. Miraculously all of her labs came back normal, even her metabolic labs. So, 3 days later we are finally home. Lindsey is still trying to wake up and get the nasty meds out of her system but, is coming along slowly. has been able to stay seizure free through all of this and was most excited to see her "sissy" today. She dogpiled her when we got home. It was a very sweet sight to see. She really missed her. Darla if you are reading this, we were at Blank Hospital and I was very impressed as a number of the doctors actually knew what a mitochondrial disorder was and even asked me what type she had. You must have trained them well!!! I haven't had time to read my 400+ e-mails and get caught up on the happenings but, continue to keep you all in my thoughts and prayers. Blessings, Kim - Mom to and Lindsey (3) Partial Complex I Please contact mito-owner with any problems or questions. This message scanned for viruses by CoreComm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 So I guess it's yippee, and bummer at the same time. But so glad that you had a good experience at the hospital and everything came out ok. Don't you just love those dogpiles? Take care and hope the end is now in site for you. Nerenhausen mom to Leah Kim Novy wrote: Hello all. Just wanted to let you know that Lindsey ended her 14 month "big" seizure free run on Tuesday. We traveled up to Mayo to meet with Dr. Whiteman and had a good visit with him. We got home and 10 minutes later, Lindsey went into a status seizure. It came from nowhere. One minute she was walking around giving everyone hugs and kisses hello and the next she was having a horrible seizure. We transported her via ambulance to the local Children's hospital and spent the next 2 1/2 hours trying to get her to stop seizing. Finally after giving her enough ativan, versed, valium and phenobarbitol to knock out a herd of cattle, she stopped. They had to put her on a ventilator as she couldn't keep up with breathing given all of the medication she was given. She did have another seizure later that night but, it was pretty short. She spiked a fever during the night and ended up with an ear infection. Miraculously all of her labs came back normal, even her metabolic labs. So, 3 days later we are finally home. Lindsey is still trying to wake up and get the nasty meds out of her system but, is coming along slowly. has been able to stay seizure free through all of this and was most excited to see her "sissy" today. She dogpiled her when we got home. It was a very sweet sight to see. She really missed her. Darla if you are reading this, we were at Blank Hospital and I was very impressed as a number of the doctors actually knew what a mitochondrial disorder was and even asked me what type she had. You must have trained them well!!! I haven't had time to read my 400+ e-mails and get caught up on the happenings but, continue to keep you all in my thoughts and prayers. Blessings, Kim - Mom to and Lindsey (3) Partial Complex I Please contact mito-owner with any problems or questions. This message scanned for viruses by CoreComm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 I am so sorry to hear about her seizure activity and everything. I was actually there visiting our other Mito family on the third floor on Tuesday at about 3 PM, but you probably came later on than that I suppose. The other Mito family (Hollister is 17 yrs. old) has been in the hospital for the past 45 days and has been there tons since he aspirated in August. I saw him in therapy downstairs and was shocked to see his decline. Sadly he had another major stroke covering most of his left occipital lobe and causing blindness which I think may slowly be resolving a little. He has MELAS. By the way, who did you see there that knew Mito the most? It isn't just me, Hollister was the beginning teacher for Blank Hospital. I am glad to hear they are learning for sure! Dr. Sealover and Dr. Metts are two docs that treat Asenath and Zipporrah in the hospital quite a bit, but several of the neurologists like Dr. Nara Wong and different residents also have treated her and Hollister as well. Let me know if there is anything I can do for you. Maybe I will try to give you a call in the next day or two in between the madness. Lots going on this weekend. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) the streak ends... Hello all. Just wanted to let you know that Lindsey ended her 14 month " big " seizure free run on Tuesday. We traveled up to Mayo to meet with Dr. Whiteman and had a good visit with him. We got home and 10 minutes later, Lindsey went into a status seizure. It came from nowhere. One minute she was walking around giving everyone hugs and kisses hello and the next she was having a horrible seizure. We transported her via ambulance to the local Children's hospital and spent the next 2 1/2 hours trying to get her to stop seizing. Finally after giving her enough ativan, versed, valium and phenobarbitol to knock out a herd of cattle, she stopped. They had to put her on a ventilator as she couldn't keep up with breathing given all of the medication she was given. She did have another seizure later that night but, it was pretty short. She spiked a fever during the night and ended up with an ear infection. Miraculously all of her labs came back normal, even her metabolic labs. So, 3 days later we are finally home. Lindsey is still trying to wake up and get the nasty meds out of her system but, is coming along slowly. has been able to stay seizure free through all of this and was most excited to see her " sissy " today. She dogpiled her when we got home. It was a very sweet sight to see. She really missed her. Darla if you are reading this, we were at Blank Hospital and I was very impressed as a number of the doctors actually knew what a mitochondrial disorder was and even asked me what type she had. You must have trained them well!!! I haven't had time to read my 400+ e-mails and get caught up on the happenings but, continue to keep you all in my thoughts and prayers. Blessings, Kim - Mom to and Lindsey (3) Partial Complex I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 I am so sorry to hear about her seizure activity and everything. I was actually there visiting our other Mito family on the third floor on Tuesday at about 3 PM, but you probably came later on than that I suppose. The other Mito family (Hollister is 17 yrs. old) has been in the hospital for the past 45 days and has been there tons since he aspirated in August. I saw him in therapy downstairs and was shocked to see his decline. Sadly he had another major stroke covering most of his left occipital lobe and causing blindness which I think may slowly be resolving a little. He has MELAS. By the way, who did you see there that knew Mito the most? It isn't just me, Hollister was the beginning teacher for Blank Hospital. I am glad to hear they are learning for sure! Dr. Sealover and Dr. Metts are two docs that treat Asenath and Zipporrah in the hospital quite a bit, but several of the neurologists like Dr. Nara Wong and different residents also have treated her and Hollister as well. Let me know if there is anything I can do for you. Maybe I will try to give you a call in the next day or two in between the madness. Lots going on this weekend. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) the streak ends... Hello all. Just wanted to let you know that Lindsey ended her 14 month " big " seizure free run on Tuesday. We traveled up to Mayo to meet with Dr. Whiteman and had a good visit with him. We got home and 10 minutes later, Lindsey went into a status seizure. It came from nowhere. One minute she was walking around giving everyone hugs and kisses hello and the next she was having a horrible seizure. We transported her via ambulance to the local Children's hospital and spent the next 2 1/2 hours trying to get her to stop seizing. Finally after giving her enough ativan, versed, valium and phenobarbitol to knock out a herd of cattle, she stopped. They had to put her on a ventilator as she couldn't keep up with breathing given all of the medication she was given. She did have another seizure later that night but, it was pretty short. She spiked a fever during the night and ended up with an ear infection. Miraculously all of her labs came back normal, even her metabolic labs. So, 3 days later we are finally home. Lindsey is still trying to wake up and get the nasty meds out of her system but, is coming along slowly. has been able to stay seizure free through all of this and was most excited to see her " sissy " today. She dogpiled her when we got home. It was a very sweet sight to see. She really missed her. Darla if you are reading this, we were at Blank Hospital and I was very impressed as a number of the doctors actually knew what a mitochondrial disorder was and even asked me what type she had. You must have trained them well!!! I haven't had time to read my 400+ e-mails and get caught up on the happenings but, continue to keep you all in my thoughts and prayers. Blessings, Kim - Mom to and Lindsey (3) Partial Complex I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 Sorry to hear about your daughter. Hope she if feeling better. I had the same thing happen to me yesterday. It was Adelines 3rd birthday yesterday and it has been 10 months that she had not had a seizure. I thought we would make it one year. She had a gran mal seizure in the afternoon, out of nowhere. She was taken to the Children's hospital, but couldn't find anything wrong with her and we were sent home later in the evening. I can't believe she had to spend another birthday at the hospital. heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 Sorry to hear about your daughter. Hope she if feeling better. I had the same thing happen to me yesterday. It was Adelines 3rd birthday yesterday and it has been 10 months that she had not had a seizure. I thought we would make it one year. She had a gran mal seizure in the afternoon, out of nowhere. She was taken to the Children's hospital, but couldn't find anything wrong with her and we were sent home later in the evening. I can't believe she had to spend another birthday at the hospital. heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 Kim, I am so sorry to hear that the good streak ended. I know how upsetting it is,when Logan has a flare up of his arthritis,after a long stretch,of being in remission. I can only imagine that a seizure would be so much more horrible. I hope she is feeling well,now Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY ________________________________________________________________ Juno Gift Certificates Give the gift of Internet access this holiday season. http://www.juno.com/give Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 Kim, I am so sorry to hear that the good streak ended. I know how upsetting it is,when Logan has a flare up of his arthritis,after a long stretch,of being in remission. I can only imagine that a seizure would be so much more horrible. I hope she is feeling well,now Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY ________________________________________________________________ Juno Gift Certificates Give the gift of Internet access this holiday season. http://www.juno.com/give Quote Link to comment Share on other sites More sharing options...
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