Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 Hi- I haven't had a chance to look at the video yet, but my son Noah has myoclonic-astatic epilepsy or Doose Syndrome. You may want to check that out to see if that sounds familiar to you, or have your neuro check to see if that could be a diagnosis. It seems to be a common syndrome brought out by meds sometimes. I will check the video later & will let you know if I recognize it. Mom to Noah, age 3 & seizure-free on keto diet Mahler ksmahler77502@...> wrote: Mike, My Joe has seizures like that and my neuro said that they are a mix of myoclonic and atonic seizures at the same time. I don't know what your neuro would say but that is what mine said. Hope you get some other replies. During Joe's tonic seizures he just becomes very stiff and his eyes roll. Hope this helps. Mom to Joe 33 months LGS is@... wrote: I just uploaded a video of the current seizures that Broc is having to his website, infantilespasms.com . It is under the Photos and Videos section and is called Broc's Seizures Summer 2004. Does anyone know what type of seizures these are? My guess is myclonic or tonic but I am not sure. Mike Bartenhagen mike@...> mike@... www.blackcows.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 Hi- I wrote in earlier when I couldn't view the video yet. I did see it, and do recognize the seizures. My son Noah would have them, and we would call those the " narcoleptic " ones.- that was our term for it as it would look like he would " nod off " out of nowhere. He used to have those most commonly at first in the morning. After a while, when I think he was toxic from his medication, he would have hundreds a day- mixed with myoclonic, absence, twitches, etc. He was diagnosed with Doose Syndrome also known as Myoclonic-Astatic Epilepsy or MAE. I would recommend asking your doctor about that, if he still has the myoclonics as well. Noah's seizures started as grand mals in November of last year & then spread to many seizure-types before he started the ketogenic diet on March 2 of this year- He haas been 100% seizure-free since March 5. He is also currently medication- free. The diet was our miracle and I do hope the very same for you!!! The diet has a super success rate for myoclonic, absence, astatic, atonic, etc. seizures. Hoping only the best! Mom to Noah, age 3 & seizure-free on the ketogenic diet > I just uploaded a video of the current seizures that Broc is having to > his > website, infantilespasms.com . It is under the Photos and Videos > section > and is called Broc's Seizures Summer 2004. Does anyone know what type > of > seizures these are? My guess is myclonic or tonic but I am not sure. > > Mike Bartenhagen > mike@b... > www.blackcows.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2004 Report Share Posted July 23, 2004 I had seen information about Doose Syndrome and how closely it resembled Infantile Spasms and I did ask the neurologist about this and he said it did not apply to Broc although I can't remember why. Mike _____ From: Sent: Thursday, July 22, 2004 4:40 PM To: ketogenic Subject: Re: New Video of Broc's Seizures - What Type?- Mike Hi- I wrote in earlier when I couldn't view the video yet. I did see it, and do recognize the seizures. My son Noah would have them, and we would call those the " narcoleptic " ones.- that was our term for it as it would look like he would " nod off " out of nowhere. He used to have those most commonly at first in the morning. After a while, when I think he was toxic from his medication, he would have hundreds a day- mixed with myoclonic, absence, twitches, etc. He was diagnosed with Doose Syndrome also known as Myoclonic-Astatic Epilepsy or MAE. I would recommend asking your doctor about that, if he still has the myoclonics as well. Noah's seizures started as grand mals in November of last year & then spread to many seizure-types before he started the ketogenic diet on March 2 of this year- He haas been 100% seizure-free since March 5. He is also currently medication- free. The diet was our miracle and I do hope the very same for you!!! The diet has a super success rate for myoclonic, absence, astatic, atonic, etc. seizures. Hoping only the best! Mom to Noah, age 3 & seizure-free on the ketogenic diet > I just uploaded a video of the current seizures that Broc is having to > his > website, infantilespasms.com . It is under the Photos and Videos > section > and is called Broc's Seizures Summer 2004. Does anyone know what type > of > seizures these are? My guess is myclonic or tonic but I am not sure. > > Mike Bartenhagen > mike@b... > www.blackcows.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2004 Report Share Posted July 23, 2004 I had seen information about Doose Syndrome and how closely it resembled Infantile Spasms and I did ask the neurologist about this and he said it did not apply to Broc although I can't remember why. Mike _____ From: Sent: Thursday, July 22, 2004 4:40 PM To: ketogenic Subject: Re: New Video of Broc's Seizures - What Type?- Mike Hi- I wrote in earlier when I couldn't view the video yet. I did see it, and do recognize the seizures. My son Noah would have them, and we would call those the " narcoleptic " ones.- that was our term for it as it would look like he would " nod off " out of nowhere. He used to have those most commonly at first in the morning. After a while, when I think he was toxic from his medication, he would have hundreds a day- mixed with myoclonic, absence, twitches, etc. He was diagnosed with Doose Syndrome also known as Myoclonic-Astatic Epilepsy or MAE. I would recommend asking your doctor about that, if he still has the myoclonics as well. Noah's seizures started as grand mals in November of last year & then spread to many seizure-types before he started the ketogenic diet on March 2 of this year- He haas been 100% seizure-free since March 5. He is also currently medication- free. The diet was our miracle and I do hope the very same for you!!! The diet has a super success rate for myoclonic, absence, astatic, atonic, etc. seizures. Hoping only the best! Mom to Noah, age 3 & seizure-free on the ketogenic diet > I just uploaded a video of the current seizures that Broc is having to > his > website, infantilespasms.com . It is under the Photos and Videos > section > and is called Broc's Seizures Summer 2004. Does anyone know what type > of > seizures these are? My guess is myclonic or tonic but I am not sure. > > Mike Bartenhagen > mike@b... > www.blackcows.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2004 Report Share Posted July 23, 2004 I had seen information about Doose Syndrome and how closely it resembled Infantile Spasms and I did ask the neurologist about this and he said it did not apply to Broc although I can't remember why. Mike _____ From: Sent: Thursday, July 22, 2004 4:40 PM To: ketogenic Subject: Re: New Video of Broc's Seizures - What Type?- Mike Hi- I wrote in earlier when I couldn't view the video yet. I did see it, and do recognize the seizures. My son Noah would have them, and we would call those the " narcoleptic " ones.- that was our term for it as it would look like he would " nod off " out of nowhere. He used to have those most commonly at first in the morning. After a while, when I think he was toxic from his medication, he would have hundreds a day- mixed with myoclonic, absence, twitches, etc. He was diagnosed with Doose Syndrome also known as Myoclonic-Astatic Epilepsy or MAE. I would recommend asking your doctor about that, if he still has the myoclonics as well. Noah's seizures started as grand mals in November of last year & then spread to many seizure-types before he started the ketogenic diet on March 2 of this year- He haas been 100% seizure-free since March 5. He is also currently medication- free. The diet was our miracle and I do hope the very same for you!!! The diet has a super success rate for myoclonic, absence, astatic, atonic, etc. seizures. Hoping only the best! Mom to Noah, age 3 & seizure-free on the ketogenic diet > I just uploaded a video of the current seizures that Broc is having to > his > website, infantilespasms.com . It is under the Photos and Videos > section > and is called Broc's Seizures Summer 2004. Does anyone know what type > of > seizures these are? My guess is myclonic or tonic but I am not sure. > > Mike Bartenhagen > mike@b... > www.blackcows.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2004 Report Share Posted July 23, 2004 Ok- just wanted to make sure it was something you did look into. I do hope you have as much success with the diet as we have! You'll do great! is@... wrote: I had seen information about Doose Syndrome and how closely it resembled Infantile Spasms and I did ask the neurologist about this and he said it did not apply to Broc although I can't remember why. Mike _____ From: Sent: Thursday, July 22, 2004 4:40 PM To: ketogenic Subject: Re: New Video of Broc's Seizures - What Type?- Mike Hi- I wrote in earlier when I couldn't view the video yet. I did see it, and do recognize the seizures. My son Noah would have them, and we would call those the " narcoleptic " ones.- that was our term for it as it would look like he would " nod off " out of nowhere. He used to have those most commonly at first in the morning. After a while, when I think he was toxic from his medication, he would have hundreds a day- mixed with myoclonic, absence, twitches, etc. He was diagnosed with Doose Syndrome also known as Myoclonic-Astatic Epilepsy or MAE. I would recommend asking your doctor about that, if he still has the myoclonics as well. Noah's seizures started as grand mals in November of last year & then spread to many seizure-types before he started the ketogenic diet on March 2 of this year- He haas been 100% seizure-free since March 5. He is also currently medication- free. The diet was our miracle and I do hope the very same for you!!! The diet has a super success rate for myoclonic, absence, astatic, atonic, etc. seizures. Hoping only the best! Mom to Noah, age 3 & seizure-free on the ketogenic diet > I just uploaded a video of the current seizures that Broc is having to > his > website, infantilespasms.com . It is under the Photos and Videos > section > and is called Broc's Seizures Summer 2004. Does anyone know what type > of > seizures these are? My guess is myclonic or tonic but I am not sure. > > Mike Bartenhagen > mike@b... > www.blackcows.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2004 Report Share Posted July 23, 2004 I also agree with Steph. My son, has Doose Syndrome as well and he was having these types of seizures as well before he started on the " correct " medication for him. He doesn't have them anymore but I have to say these were the worst for me because he couldn't move around at all. We have stairs in our house and even though we put up baby gates, would just clinb them. He was old enough to know how. Ahhhh Good luck onthe diet and I really hope it works well for you. I have heard so many people have luck with it! Allyson Re: New Video of Broc's Seizures - What Type?- Mike > Hi- I wrote in earlier when I couldn't view the video yet. I did see > it, and do recognize the seizures. My son Noah would have them, and > we would call those the " narcoleptic " ones.- that was our term for it > as it would look like he would " nod off " out of nowhere. He used to > have those most commonly at first in the morning. After a while, when > I think he was toxic from his medication, he would have hundreds a > day- mixed with myoclonic, absence, twitches, etc. > > He was diagnosed with Doose Syndrome also known as Myoclonic-Astatic > Epilepsy or MAE. I would recommend asking your doctor about that, if > he still has the myoclonics as well. Noah's seizures started as grand > mals in November of last year & then spread to many seizure-types > before he started the ketogenic diet on March 2 of this year- He haas > been 100% seizure-free since March 5. He is also currently medication- > free. The diet was our miracle and I do hope the very same for you!!! > The diet has a super success rate for myoclonic, absence, astatic, > atonic, etc. seizures. > > Hoping only the best! > > Mom to Noah, age 3 & seizure-free on the ketogenic diet > > > > I just uploaded a video of the current seizures that Broc is > having to > > his > > website, infantilespasms.com . It is under the Photos and > Videos > > section > > and is called Broc's Seizures Summer 2004. Does anyone know > what type > > of > > seizures these are? My guess is myclonic or tonic but I am not > sure. > > > > Mike Bartenhagen > > mike@b... > > www.blackcows.com > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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