Guest guest Posted April 22, 2007 Report Share Posted April 22, 2007 We have done a double dose of IVIG every 21 days for 10 months now and his " staring off into space " went away almost immediately. The EEG was done 3 months later and we had no episodes the entire time they monitored him, so it was a waste of the hospital's time, but they couldn't schedule him a bed sooner. There is an immumologist in Louisiana who would probably prescribe it for your son if you wanted to do more. The neurologists here consider it " liguid gold " and " look for reasons to px it " (my neurologist's words), so it is interesting how the opinions differ. I am in Phoenix, AZ. My son gets it covered because of his low IgGs (and an immunologist prescribes it), but the neurologists are in full support and even re-run his cytokine profile prior to our visits, so they can watch his elevations drop! If you need to come out here, I can recommend a few neurologist as the hospital here is " internationally recognized " for neurology. It's often worth it to travel. There is a RMH, so you stay for $10/night and you can usually get a free flight for medical travel. We added HBOT to the IVIG, and are seeing the best result ever. HBOT enhances IVIG, which was one reason we wanted to try it. I see your child also has apraxia. The HBOT really addresses the fine motor control, so it might especially help there. We noted with our neurologist that at one point our son developed a drooping lower jaw, and completely lost all articulation in his speech at the same time. Thus far, HBOT has helped my son with fine-motor control of his fingers and hands and he now crosses midline. We are watching and waiting to see if the muscle control in his jaw improves. He doesn't drool, just has a lazy lower lip and it appeared " out of the blue " -- which is always a scary thing. We are trying to get my son on SCD, but at this point he is grain-free and working towards 100% SCD. He will take some time due to his feeding issues. - Lake wrote: Dear , I believe that definitely it could have affected the outcome of the EEG. IVIG is used sometimes to treat intractable epilepsy, plus it is used to treat LKS, so this would make sense. Is he still on IVIG? My son was on for 9 months with good results, clean EEG, but I could not convince the Canadian medical system to continue, and have not been able to convince any neurologist since I moved to the SE United States to start IVIG again, even though it definitely worked and I documented that with speech therapy testing results before, during, and after. Within three months after stopping IVIG, the EEG started showing spiking again, with a corresponding regression in language. With SCD, I'm seeing some of the same improvements as on IVIG. Are you doing both at the same time? What results have you seen? Thanks, Mother of Virya age 16, autism, LKS, apraxia, aphasia, on SCD since March 07 Rob or Sunseri wrote: Recent Activity 26 New Members 1 New Files Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2007 Report Share Posted April 22, 2007 As I read all of this, it makes me wonder if I should have iel tested for any kind of seizure disorders or stuff you guys are discussing. He's never had a noticeable seizure. He does stare off into space, but it has improved dramaticly since starting SCD and all of our biomedicals. I just figured it has always been part of the ASD thing with him just zoning out into his own world. However, my husband is epileptic, so it wouldn't be a shocker if iel had some sort of seizure disorder. My father-in-law is also epileptic. Do you think it is worth doing any testin for, and if so, what tests would I ask for and what would I give for a reason? Meleah OT - LKS We have done a double dose of IVIG every 21 days for 10 months now and his " staring off into space " went away almost immediately. The EEG was done 3 months later and we had no episodes the entire time they monitored him, so it was a waste of the hospital's time, but they couldn't schedule him a bed sooner. There is an immumologist in Louisiana who would probably prescribe it for your son if you wanted to do more. The neurologists here consider it " liguid gold " and " look for reasons to px it " (my neurologist's words), so it is interesting how the opinions differ. I am in Phoenix, AZ. My son gets it covered because of his low IgGs (and an immunologist prescribes it), but the neurologists are in full support and even re-run his cytokine profile prior to our visits, so they can watch his elevations drop! If you need to come out here, I can recommend a few neurologist as the hospital here is " internationally recognized " for neurology. It's often worth it to travel. There is a RMH, so you stay for $10/night and you can usually get a free flight for medical travel. We added HBOT to the IVIG, and are seeing the best result ever. HBOT enhances IVIG, which was one reason we wanted to try it. I see your child also has apraxia. The HBOT really addresses the fine motor control, so it might especially help there. We noted with our neurologist that at one point our son developed a drooping lower jaw, and completely lost all articulation in his speech at the same time. Thus far, HBOT has helped my son with fine-motor control of his fingers and hands and he now crosses midline. We are watching and waiting to see if the muscle control in his jaw improves. He doesn't drool, just has a lazy lower lip and it appeared " out of the blue " -- which is always a scary thing. We are trying to get my son on SCD, but at this point he is grain-free and working towards 100% SCD. He will take some time due to his feeding issues. - Lake wrote: Dear , I believe that definitely it could have affected the outcome of the EEG. IVIG is used sometimes to treat intractable epilepsy, plus it is used to treat LKS, so this would make sense. Is he still on IVIG? My son was on for 9 months with good results, clean EEG, but I could not convince the Canadian medical system to continue, and have not been able to convince any neurologist since I moved to the SE United States to start IVIG again, even though it definitely worked and I documented that with speech therapy testing results before, during, and after. Within three months after stopping IVIG, the EEG started showing spiking again, with a corresponding regression in language. With SCD, I'm seeing some of the same improvements as on IVIG. Are you doing both at the same time? What results have you seen? Thanks, Mother of Virya age 16, autism, LKS, apraxia, aphasia, on SCD since March 07 Rob or Sunseri wrote: Recent Activity 26 New Members 1 New Files Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2007 Report Share Posted April 22, 2007 Well, here's the informal seizure test our neurologist told us to do. When was zoning, she told us to stick a " wet willy " in his ear (wet finger). If it is a seizure, they will not react. If it is zoning for other reasons, they will likely snap out of it. It's not a bad idea to rule out seizures IMO since over 30% of our kids have them. Just make sure you do a minimum of a 24-hour EEG. The 1-2 hour ones almost never pick anything up. We just told the doctor we wanted seizures ruled out, and they ran the EEG. They shouldn't give you a problem since he has ASD. One parent of a child in our community did the same and it turned out they were having 36 seizures in 24 hours. The child was just thought to be spacey all day long, but it was really seizures. - robin wrote: As I read all of this, it makes me wonder if I should have iel tested for any kind of seizure disorders or stuff you guys are discussing. He's never had a noticeable seizure. He does stare off into space, but it has improved dramaticly since starting SCD and all of our biomedicals. I just figured it has always been part of the ASD thing with him just zoning out into his own world. However, my husband is epileptic, so it wouldn't be a shocker if iel had some sort of seizure disorder. My father-in-law is also epileptic. Do you think it is worth doing any testin for, and if so, what tests would I ask for and what would I give for a reason? Meleah OT - LKS We have done a double dose of IVIG every 21 days for 10 months now and his " staring off into space " went away almost immediately. The EEG was done 3 months later and we had no episodes the entire time they monitored him, so it was a waste of the hospital's time, but they couldn't schedule him a bed sooner. There is an immumologist in Louisiana who would probably prescribe it for your son if you wanted to do more. The neurologists here consider it " liguid gold " and " look for reasons to px it " (my neurologist's words), so it is interesting how the opinions differ. I am in Phoenix, AZ. My son gets it covered because of his low IgGs (and an immunologist prescribes it), but the neurologists are in full support and even re-run his cytokine profile prior to our visits, so they can watch his elevations drop! If you need to come out here, I can recommend a few neurologist as the hospital here is " internationally recognized " for neurology. It's often worth it to travel. There is a RMH, so you stay for $10/night and you can usually get a free flight for medical travel. We added HBOT to the IVIG, and are seeing the best result ever. HBOT enhances IVIG, which was one reason we wanted to try it. I see your child also has apraxia. The HBOT really addresses the fine motor control, so it might especially help there. We noted with our neurologist that at one point our son developed a drooping lower jaw, and completely lost all articulation in his speech at the same time. Thus far, HBOT has helped my son with fine-motor control of his fingers and hands and he now crosses midline. We are watching and waiting to see if the muscle control in his jaw improves. He doesn't drool, just has a lazy lower lip and it appeared " out of the blue " -- which is always a scary thing. We are trying to get my son on SCD, but at this point he is grain-free and working towards 100% SCD. He will take some time due to his feeding issues. - Lake wrote: Dear , I believe that definitely it could have affected the outcome of the EEG. IVIG is used sometimes to treat intractable epilepsy, plus it is used to treat LKS, so this would make sense. Is he still on IVIG? My son was on for 9 months with good results, clean EEG, but I could not convince the Canadian medical system to continue, and have not been able to convince any neurologist since I moved to the SE United States to start IVIG again, even though it definitely worked and I documented that with speech therapy testing results before, during, and after. Within three months after stopping IVIG, the EEG started showing spiking again, with a corresponding regression in language. With SCD, I'm seeing some of the same improvements as on IVIG. Are you doing both at the same time? What results have you seen? Thanks, Mother of Virya age 16, autism, LKS, apraxia, aphasia, on SCD since March 07 Rob or Sunseri wrote: Recent Activity 26 New Members 1 New Files Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2007 Report Share Posted April 22, 2007 Hi , I talked to you during Rok's meeting. Could you post me the name of neurologist. Ritvik stares blankly a lot. I have problem of seizures too.I will try your wet finger method too. He stares for 10-11 seconds. If you shake him or say loudly his name , he is back to normal. I was doubting if he has absence seizures. Thanks.. Kavita > Recent Activity > > 26 > New Members > > 1 > New Files > > Visit Your Group > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 Does the child have to stay in the hospital during that 24 hours period of testing? I guess I would contact a pediatric neurologist about this? I will watch for a chance today to try the wet willie. Thanks. Meleah ----- Originalsage ----- From: Rob or Sunseri To: pecanbread Sent: Sunday, April 22, 2007 9:38 PM Subject: Re: OT - LKS Well, here's the informal seizure test our neurologist told us to do. When was zoning, she told us to stick a " wet willy " in his ear (wet finger). If it is a seizure, they will not react. If it is zoning for other reasons, they will likely snap out of it. It's not a bad idea to rule out seizures IMO since over 30% of our kids have them. Just make sure you do a minimum of a 24-hour EEG. The 1-2 hour ones almost never pick anything up. We just told the doctor we wanted seizures ruled out, and they ran the EEG. They shouldn't give you a problem since he has ASD. One parent of a child in our community did the same and it turned out they were having 36 seizures in 24 hours. The child was just thought to be spacey all day long, but it was really seizures. - robin wrote: As I read all of this, it makes me wonder if I should have iel tested for any kind of seizure disorders or stuff you guys are discussing. He's never had a noticeable seizure. He does stare off into space, but it has improved dramaticly since starting SCD and all of our biomedicals. I just figured it has always been part of the ASD thing with him just zoning out into his own world. However, my husband is epileptic, so it wouldn't be a shocker if iel had some sort of seizure disorder. My father-in-law is also epileptic. Do you think it is worth doing any testin for, and if so, what tests would I ask for and what would I give for a reason? Meleah OT - LKS We have done a double dose of IVIG every 21 days for 10 months now and his " staring off into space " went away almost immediately. The EEG was done 3 months later and we had no episodes the entire time they monitored him, so it was a waste of the hospital's time, but they couldn't schedule him a bed sooner. There is an immumologist in Louisiana who would probably prescribe it for your son if you wanted to do more. The neurologists here consider it " liguid gold " and " look for reasons to px it " (my neurologist's words), so it is interesting how the opinions differ. I am in Phoenix, AZ. My son gets it covered because of his low IgGs (and an immunologist prescribes it), but the neurologists are in full support and even re-run his cytokine profile prior to our visits, so they can watch his elevations drop! If you need to come out here, I can recommend a few neurologist as the hospital here is " internationally recognized " for neurology. It's often worth it to travel. There is a RMH, so you stay for $10/night and you can usually get a free flight for medical travel. We added HBOT to the IVIG, and are seeing the best result ever. HBOT enhances IVIG, which was one reason we wanted to try it. I see your child also has apraxia. The HBOT really addresses the fine motor control, so it might especially help there. We noted with our neurologist that at one point our son developed a drooping lower jaw, and completely lost all articulation in his speech at the same time. Thus far, HBOT has helped my son with fine-motor control of his fingers and hands and he now crosses midline. We are watching and waiting to see if the muscle control in his jaw improves. He doesn't drool, just has a lazy lower lip and it appeared " out of the blue " -- which is always a scary thing. We are trying to get my son on SCD, but at this point he is grain-free and working towards 100% SCD. He will take some time due to his feeding issues. - Lake wrote: Dear , I believe that definitely it could have affected the outcome of the EEG. IVIG is used sometimes to treat intractable epilepsy, plus it is used to treat LKS, so this would make sense. Is he still on IVIG? My son was on for 9 months with good results, clean EEG, but I could not convince the Canadian medical system to continue, and have not been able to convince any neurologist since I moved to the SE United States to start IVIG again, even though it definitely worked and I documented that with speech therapy testing results before, during, and after. Within three months after stopping IVIG, the EEG started showing spiking again, with a corresponding regression in language. With SCD, I'm seeing some of the same improvements as on IVIG. Are you doing both at the same time? What results have you seen? Thanks, Mother of Virya age 16, autism, LKS, apraxia, aphasia, on SCD since March 07 Rob or Sunseri wrote: Recent Activity 26 New Members 1 New Files Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 Dear , Thanks so much for this info. I'm printing out your email so I can follow up with you later. Would like the name of your neurologist. I'll have to find out how out of state insurance coverage works. Fine motor issues are a big thing for my son too, as well as dropping his mouth open and a lot of difficulty with motor coordination at all levels, including speech. What is HBOT? Sounds like you have a very good treatment program going and it would be worth a trip out of state for us. Best, Rob or Sunseri wrote: We have done a double dose of IVIG every 21 days for 10 months now and his " staring off into space " went away almost immediately. The EEG was done 3 months later and we had no episodes the entire time they monitored him, so it was a waste of the hospital's time, but they couldn't schedule him a bed sooner. There is an immumologist in Louisiana who would probably prescribe it for your son if you wanted to do more. The neurologists here consider it " liguid gold " and " look for reasons to px it " (my neurologist's words), so it is interesting how the opinions differ. I am in Phoenix, AZ. My son gets it covered because of his low IgGs (and an immunologist prescribes it), but the neurologists are in full support and even re-run his cytokine profile prior to our visits, so they can watch his elevations drop! If you need to come out here, I can recommend a few neurologist as the hospital here is " internationally recognized " for neurology. It's often worth it to travel. There is a RMH, so you stay for $10/night and you can usually get a free flight for medical travel. We added HBOT to the IVIG, and are seeing the best result ever. HBOT enhances IVIG, which was one reason we wanted to try it. I see your child also has apraxia. The HBOT really addresses the fine motor control, so it might especially help there. We noted with our neurologist that at one point our son developed a drooping lower jaw, and completely lost all articulation in his speech at the same time. Thus far, HBOT has helped my son with fine-motor control of his fingers and hands and he now crosses midline. We are watching and waiting to see if the muscle control in his jaw improves. He doesn't drool, just has a lazy lower lip and it appeared " out of the blue " -- which is always a scary thing. We are trying to get my son on SCD, but at this point he is grain-free and working towards 100% SCD. He will take some time due to his feeding issues. - Lake wrote: Dear , I believe that definitely it could have affected the outcome of the EEG. IVIG is used sometimes to treat intractable epilepsy, plus it is used to treat LKS, so this would make sense. Is he still on IVIG? My son was on for 9 months with good results, clean EEG, but I could not convince the Canadian medical system to continue, and have not been able to convince any neurologist since I moved to the SE United States to start IVIG again, even though it definitely worked and I documented that with speech therapy testing results before, during, and after. Within three months after stopping IVIG, the EEG started showing spiking again, with a corresponding regression in language. With SCD, I'm seeing some of the same improvements as on IVIG. Are you doing both at the same time? What results have you seen? Thanks, Mother of Virya age 16, autism, LKS, apraxia, aphasia, on SCD since March 07 Rob or Sunseri wrote: Recent Activity 26 New Members 1 New Files Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 There are two ways to do the extended testing -- in the hospital if they want video of any potential seizure events, or overnight portable pack you can take home -- usually Digitrace EEG. The overnight take-home kind should be fine. A note on the wet willie -- my son's absence spells were always very short and by the time I did the wet willie he did react and snap out of it -- however, he was having seizures. robin wrote: Does the child have to stay in the hospital during that 24 hours period of testing? I guess I would contact a pediatric neurologist about this? I will watch for a chance today to try the wet willie. Thanks. Meleah ----- Originalsage ----- From: Rob or Sunseri To: pecanbread Sent: Sunday, April 22, 2007 9:38 PM Subject: Re: OT - LKS Well, here's the informal seizure test our neurologist told us to do. When was zoning, she told us to stick a " wet willy " in his ear (wet finger). If it is a seizure, they will not react. If it is zoning for other reasons, they will likely snap out of it. It's not a bad idea to rule out seizures IMO since over 30% of our kids have them. Just make sure you do a minimum of a 24-hour EEG. The 1-2 hour ones almost never pick anything up. We just told the doctor we wanted seizures ruled out, and they ran the EEG. They shouldn't give you a problem since he has ASD. One parent of a child in our community did the same and it turned out they were having 36 seizures in 24 hours. The child was just thought to be spacey all day long, but it was really seizures. - robin wrote: As I read all of this, it makes me wonder if I should have iel tested for any kind of seizure disorders or stuff you guys are discussing. He's never had a noticeable seizure. He does stare off into space, but it has improved dramaticly since starting SCD and all of our biomedicals. I just figured it has always been part of the ASD thing with him just zoning out into his own world. However, my husband is epileptic, so it wouldn't be a shocker if iel had some sort of seizure disorder. My father-in-law is also epileptic. Do you think it is worth doing any testin for, and if so, what tests would I ask for and what would I give for a reason? Meleah OT - LKS We have done a double dose of IVIG every 21 days for 10 months now and his " staring off into space " went away almost immediately. The EEG was done 3 months later and we had no episodes the entire time they monitored him, so it was a waste of the hospital's time, but they couldn't schedule him a bed sooner. There is an immumologist in Louisiana who would probably prescribe it for your son if you wanted to do more. The neurologists here consider it " liguid gold " and " look for reasons to px it " (my neurologist's words), so it is interesting how the opinions differ. I am in Phoenix, AZ. My son gets it covered because of his low IgGs (and an immunologist prescribes it), but the neurologists are in full support and even re-run his cytokine profile prior to our visits, so they can watch his elevations drop! If you need to come out here, I can recommend a few neurologist as the hospital here is " internationally recognized " for neurology. It's often worth it to travel. There is a RMH, so you stay for $10/night and you can usually get a free flight for medical travel. We added HBOT to the IVIG, and are seeing the best result ever. HBOT enhances IVIG, which was one reason we wanted to try it. I see your child also has apraxia. The HBOT really addresses the fine motor control, so it might especially help there. We noted with our neurologist that at one point our son developed a drooping lower jaw, and completely lost all articulation in his speech at the same time. Thus far, HBOT has helped my son with fine-motor control of his fingers and hands and he now crosses midline. We are watching and waiting to see if the muscle control in his jaw improves. He doesn't drool, just has a lazy lower lip and it appeared " out of the blue " -- which is always a scary thing. We are trying to get my son on SCD, but at this point he is grain-free and working towards 100% SCD. He will take some time due to his feeding issues. - Lake wrote: Dear , I believe that definitely it could have affected the outcome of the EEG. IVIG is used sometimes to treat intractable epilepsy, plus it is used to treat LKS, so this would make sense. Is he still on IVIG? My son was on for 9 months with good results, clean EEG, but I could not convince the Canadian medical system to continue, and have not been able to convince any neurologist since I moved to the SE United States to start IVIG again, even though it definitely worked and I documented that with speech therapy testing results before, during, and after. Within three months after stopping IVIG, the EEG started showing spiking again, with a corresponding regression in language. With SCD, I'm seeing some of the same improvements as on IVIG. Are you doing both at the same time? What results have you seen? Thanks, Mother of Virya age 16, autism, LKS, apraxia, aphasia, on SCD since March 07 Rob or Sunseri wrote: Recent Activity 26 New Members 1 New Files Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 Dear Meleah, I sent this message before but it bounced back. Trying again: I think a lot of protocols now call for any child with ASD to have an EEG, so that should be a good reason to have one if you need to tell the doctor the reason. To detect LKS, you would have to have an overnight EEG, and you would need a neurologist who is open to looking for ANY types of abnormalities, not just the classic LKS patterns they have read about. Sometimes a 20-minute EEG in the daytime won't show the problem, but sometimes it will. It's absolutely essential that the child falls asleep, because LKS abnormalities only show up during sleep, not waking time. Also, they should not use a sedative like chloral hydrate, because it masks the abnormalities. You have to just sleep deprive your child and then get him to fall asleep naturally. It can be quite an ordeal because kids don't like having the leads put on their head, so I hope it wouldn't be traumatic for you. Dr. Chez uses a sedative called Elavil that works great and does not mask the EEG, but many doctors have never heard of using this and just point blank refuse. Do I sound frustrated? A key question is whether iel ever has had regressions where he lost skills or language he previously had. A history of regressions is typical of LKS. With my son, we got the EEG done and then we sent the actual tracings (not just the report, which is open to interpretation) to Dr. Chez in Chicago area, a world specialist. More than half of neurologists are very resistant to the LKS diagnosis, in my experience, and it's very difficult to get anywhere with them. Or you could ask around on the LKS list on yahoo groups for a good neuro in your area. That is great news that the SCD diet is helping with the staring spells. I used to think my son was just doing an autistic space out, until I found out those were absence seizures. They went away when we started anticonvulsants and then I saw the difference. This SCD diet makes so much sense to me, based on things I've observed about my son over the years. It seems like now the pieces are falling into place, or at least some of the pieces. robin wrote: Does the child have to stay in the hospital during that 24 hours period of testing? I guess I would contact a pediatric neurologist about this? I will watch for a chance today to try the wet willie. Thanks. Meleah ----- Originalsage ----- From: Rob or Sunseri To: pecanbread Sent: Sunday, April 22, 2007 9:38 PM Subject: Re: OT - LKS Well, here's the informal seizure test our neurologist told us to do. When was zoning, she told us to stick a " wet willy " in his ear (wet finger). If it is a seizure, they will not react. If it is zoning for other reasons, they will likely snap out of it. It's not a bad idea to rule out seizures IMO since over 30% of our kids have them. Just make sure you do a minimum of a 24-hour EEG. The 1-2 hour ones almost never pick anything up. We just told the doctor we wanted seizures ruled out, and they ran the EEG. They shouldn't give you a problem since he has ASD. One parent of a child in our community did the same and it turned out they were having 36 seizures in 24 hours. The child was just thought to be spacey all day long, but it was really seizures. - robin wrote: As I read all of this, it makes me wonder if I should have iel tested for any kind of seizure disorders or stuff you guys are discussing. He's never had a noticeable seizure. He does stare off into space, but it has improved dramaticly since starting SCD and all of our biomedicals. I just figured it has always been part of the ASD thing with him just zoning out into his own world. However, my husband is epileptic, so it wouldn't be a shocker if iel had some sort of seizure disorder. My father-in-law is also epileptic. Do you think it is worth doing any testin for, and if so, what tests would I ask for and what would I give for a reason? Meleah OT - LKS We have done a double dose of IVIG every 21 days for 10 months now and his " staring off into space " went away almost immediately. The EEG was done 3 months later and we had no episodes the entire time they monitored him, so it was a waste of the hospital's time, but they couldn't schedule him a bed sooner. There is an immumologist in Louisiana who would probably prescribe it for your son if you wanted to do more. The neurologists here consider it " liguid gold " and " look for reasons to px it " (my neurologist's words), so it is interesting how the opinions differ. I am in Phoenix, AZ. My son gets it covered because of his low IgGs (and an immunologist prescribes it), but the neurologists are in full support and even re-run his cytokine profile prior to our visits, so they can watch his elevations drop! If you need to come out here, I can recommend a few neurologist as the hospital here is " internationally recognized " for neurology. It's often worth it to travel. There is a RMH, so you stay for $10/night and you can usually get a free flight for medical travel. We added HBOT to the IVIG, and are seeing the best result ever. HBOT enhances IVIG, which was one reason we wanted to try it. I see your child also has apraxia. The HBOT really addresses the fine motor control, so it might especially help there. We noted with our neurologist that at one point our son developed a drooping lower jaw, and completely lost all articulation in his speech at the same time. Thus far, HBOT has helped my son with fine-motor control of his fingers and hands and he now crosses midline. We are watching and waiting to see if the muscle control in his jaw improves. He doesn't drool, just has a lazy lower lip and it appeared " out of the blue " -- which is always a scary thing. We are trying to get my son on SCD, but at this point he is grain-free and working towards 100% SCD. He will take some time due to his feeding issues. - Lake wrote: Dear , I believe that definitely it could have affected the outcome of the EEG. IVIG is used sometimes to treat intractable epilepsy, plus it is used to treat LKS, so this would make sense. Is he still on IVIG? My son was on for 9 months with good results, clean EEG, but I could not convince the Canadian medical system to continue, and have not been able to convince any neurologist since I moved to the SE United States to start IVIG again, even though it definitely worked and I documented that with speech therapy testing results before, during, and after. Within three months after stopping IVIG, the EEG started showing spiking again, with a corresponding regression in language. With SCD, I'm seeing some of the same improvements as on IVIG. Are you doing both at the same time? What results have you seen? Thanks, Mother of Virya age 16, autism, LKS, apraxia, aphasia, on SCD since March 07 Rob or Sunseri wrote: Recent Activity 26 New Members 1 New Files Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 Thanks for the info. Yes, he has had regression where he lost language. He was developing completely typically up until around 14 or 15 months. He had about five or six words, was interacting with his brother, ect. I kept very detailed records in his baby book of his monthly development, habits, ect. Everything was normal until some time around 14 or 15 months. I was concerned at his 12 month check up that he wasn't pulling up yet and he was self stimming by bumping his head on the wall gently. However, our pediatrician said this was still normal for a 12 month old to do, and my sister-in-law said her daughter was still doing it as well. She is only a week older than my son, and she is completely neurotypical. His interaction was good though. There were a couple of things to be concerned about like I mentioned, but his language and motor sskills were on track. He didn't have any 15 month vaccinnes, so I can't contribute the regression to those. We do believe that the flu vaccinne was a kicker for him, but I won't go into all of that right now. Anyway, do you think it merits having an EEG done? If I sent the results to a world specialist to interpretted, would it really matter which pediatric neurologist performed the EEG? Does iel need to remain asleep the entire time of the 24 hour EEG? I think he would fall asleep on his own even though he would certainly be bothered by the leads on his head before he went to sleep. He is a sound sleeper at night, too, and only wakes if he needs to use the bathroom. He usually sleeps 10 or 11 hours. What do you think? I can ask my husband's neurologist if he can recommend a really, really good pediatric neurologist for me. We know him outside of the doctor/patient relationship, so I can explain the whole reasoning why I'm even wanting to have the test run without him thinking I'm a nut case. Give me any thoughts and suggestions. Meleah OT - LKS We have done a double dose of IVIG every 21 days for 10 months now and his " staring off into space " went away almost immediately. The EEG was done 3 months later and we had no episodes the entire time they monitored him, so it was a waste of the hospital's time, but they couldn't schedule him a bed sooner. There is an immumologist in Louisiana who would probably prescribe it for your son if you wanted to do more. The neurologists here consider it " liguid gold " and " look for reasons to px it " (my neurologist's words), so it is interesting how the opinions differ. I am in Phoenix, AZ. My son gets it covered because of his low IgGs (and an immunologist prescribes it), but the neurologists are in full support and even re-run his cytokine profile prior to our visits, so they can watch his elevations drop! If you need to come out here, I can recommend a few neurologist as the hospital here is " internationally recognized " for neurology. It's often worth it to travel. There is a RMH, so you stay for $10/night and you can usually get a free flight for medical travel. We added HBOT to the IVIG, and are seeing the best result ever. HBOT enhances IVIG, which was one reason we wanted to try it. I see your child also has apraxia. The HBOT really addresses the fine motor control, so it might especially help there. We noted with our neurologist that at one point our son developed a drooping lower jaw, and completely lost all articulation in his speech at the same time. Thus far, HBOT has helped my son with fine-motor control of his fingers and hands and he now crosses midline. We are watching and waiting to see if the muscle control in his jaw improves. He doesn't drool, just has a lazy lower lip and it appeared " out of the blue " -- which is always a scary thing. We are trying to get my son on SCD, but at this point he is grain-free and working towards 100% SCD. He will take some time due to his feeding issues. - Lake wrote: Dear , I believe that definitely it could have affected the outcome of the EEG. IVIG is used sometimes to treat intractable epilepsy, plus it is used to treat LKS, so this would make sense. Is he still on IVIG? My son was on for 9 months with good results, clean EEG, but I could not convince the Canadian medical system to continue, and have not been able to convince any neurologist since I moved to the SE United States to start IVIG again, even though it definitely worked and I documented that with speech therapy testing results before, during, and after. Within three months after stopping IVIG, the EEG started showing spiking again, with a corresponding regression in language. With SCD, I'm seeing some of the same improvements as on IVIG. Are you doing both at the same time? What results have you seen? Thanks, Mother of Virya age 16, autism, LKS, apraxia, aphasia, on SCD since March 07 Rob or Sunseri wrote: Recent Activity 26 New Members 1 New Files Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 This is where my son has always been atypical -- in the regression department. He was entered into EI at 23 months, but found to have no social delays only speech. He had been using sign language from the age of 9 months had a normal vocabulary for a child his age -- but it was all signs. Then he began to speak at 2 and took off verbally. Suddenly at almost 3, he regressed and lost all of his words and social skills and began starring off into space and had a few funny head movements as well. He also stopped growing at that time. He had another huge regression at almost 4 and a smaller one at almost 5. Then we started on IVIG and my fingers are crossed. He resumed growing again once we got on the IVIG. I guess I need to learn more about LKS (which is what they were looking for with his 4-day EEG). They did say, " well if he was having the type of seizures we were looking for, we would have put him on IVIG anyway -- so maybe that's why he's doing so well. " - Lake wrote: Dear Meleah, I sent this message before but it bounced back. Trying again: I think a lot of protocols now call for any child with ASD to have an EEG, so that should be a good reason to have one if you need to tell the doctor the reason. To detect LKS, you would have to have an overnight EEG, and you would need a neurologist who is open to looking for ANY types of abnormalities, not just the classic LKS patterns they have read about. Sometimes a 20-minute EEG in the daytime won't show the problem, but sometimes it will. It's absolutely essential that the child falls asleep, because LKS abnormalities only show up during sleep, not waking time. Also, they should not use a sedative like chloral hydrate, because it masks the abnormalities. You have to just sleep deprive your child and then get him to fall asleep naturally. It can be quite an ordeal because kids don't like having the leads put on their head, so I hope it wouldn't be traumatic for you. Dr. Chez uses a sedative called Elavil that works great and does not mask the EEG, but many doctors have never heard of using this and just point blank refuse. Do I sound frustrated? A key question is whether iel ever has had regressions where he lost skills or language he previously had. A history of regressions is typical of LKS. With my son, we got the EEG done and then we sent the actual tracings (not just the report, which is open to interpretation) to Dr. Chez in Chicago area, a world specialist. More than half of neurologists are very resistant to the LKS diagnosis, in my experience, and it's very difficult to get anywhere with them. Or you could ask around on the LKS list on yahoo groups for a good neuro in your area. That is great news that the SCD diet is helping with the staring spells. I used to think my son was just doing an autistic space out, until I found out those were absence seizures. They went away when we started anticonvulsants and then I saw the difference. This SCD diet makes so much sense to me, based on things I've observed about my son over the years. It seems like now the pieces are falling into place, or at least some of the pieces. robin wrote: Does the child have to stay in the hospital during that 24 hours period of testing? I guess I would contact a pediatric neurologist about this? I will watch for a chance today to try the wet willie. Thanks. Meleah ----- Originalsage ----- From: Rob or Sunseri To: pecanbread Sent: Sunday, April 22, 2007 9:38 PM Subject: Re: OT - LKS Well, here's the informal seizure test our neurologist told us to do. When was zoning, she told us to stick a " wet willy " in his ear (wet finger). If it is a seizure, they will not react. If it is zoning for other reasons, they will likely snap out of it. It's not a bad idea to rule out seizures IMO since over 30% of our kids have them. Just make sure you do a minimum of a 24-hour EEG. The 1-2 hour ones almost never pick anything up. We just told the doctor we wanted seizures ruled out, and they ran the EEG. They shouldn't give you a problem since he has ASD. One parent of a child in our community did the same and it turned out they were having 36 seizures in 24 hours. The child was just thought to be spacey all day long, but it was really seizures. - robin wrote: As I read all of this, it makes me wonder if I should have iel tested for any kind of seizure disorders or stuff you guys are discussing. He's never had a noticeable seizure. He does stare off into space, but it has improved dramaticly since starting SCD and all of our biomedicals. I just figured it has always been part of the ASD thing with him just zoning out into his own world. However, my husband is epileptic, so it wouldn't be a shocker if iel had some sort of seizure disorder. My father-in-law is also epileptic. Do you think it is worth doing any testin for, and if so, what tests would I ask for and what would I give for a reason? Meleah OT - LKS We have done a double dose of IVIG every 21 days for 10 months now and his " staring off into space " went away almost immediately. The EEG was done 3 months later and we had no episodes the entire time they monitored him, so it was a waste of the hospital's time, but they couldn't schedule him a bed sooner. There is an immumologist in Louisiana who would probably prescribe it for your son if you wanted to do more. The neurologists here consider it " liguid gold " and " look for reasons to px it " (my neurologist's words), so it is interesting how the opinions differ. I am in Phoenix, AZ. My son gets it covered because of his low IgGs (and an immunologist prescribes it), but the neurologists are in full support and even re-run his cytokine profile prior to our visits, so they can watch his elevations drop! If you need to come out here, I can recommend a few neurologist as the hospital here is " internationally recognized " for neurology. It's often worth it to travel. There is a RMH, so you stay for $10/night and you can usually get a free flight for medical travel. We added HBOT to the IVIG, and are seeing the best result ever. HBOT enhances IVIG, which was one reason we wanted to try it. I see your child also has apraxia. The HBOT really addresses the fine motor control, so it might especially help there. We noted with our neurologist that at one point our son developed a drooping lower jaw, and completely lost all articulation in his speech at the same time. Thus far, HBOT has helped my son with fine-motor control of his fingers and hands and he now crosses midline. We are watching and waiting to see if the muscle control in his jaw improves. He doesn't drool, just has a lazy lower lip and it appeared " out of the blue " -- which is always a scary thing. We are trying to get my son on SCD, but at this point he is grain-free and working towards 100% SCD. He will take some time due to his feeding issues. - Lake wrote: Dear , I believe that definitely it could have affected the outcome of the EEG. IVIG is used sometimes to treat intractable epilepsy, plus it is used to treat LKS, so this would make sense. Is he still on IVIG? My son was on for 9 months with good results, clean EEG, but I could not convince the Canadian medical system to continue, and have not been able to convince any neurologist since I moved to the SE United States to start IVIG again, even though it definitely worked and I documented that with speech therapy testing results before, during, and after. Within three months after stopping IVIG, the EEG started showing spiking again, with a corresponding regression in language. With SCD, I'm seeing some of the same improvements as on IVIG. Are you doing both at the same time? What results have you seen? Thanks, Mother of Virya age 16, autism, LKS, apraxia, aphasia, on SCD since March 07 Rob or Sunseri wrote: Recent Activity 26 New Members 1 New Files Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 Yes, our neuro just asked us to do that and keep a log as we couldn't get a bed for the EEG for 3 months. She wasn't going to not do the EEG based on the wet willy test! - Lake wrote: There are two ways to do the extended testing -- in the hospital if they want video of any potential seizure events, or overnight portable pack you can take home -- usually Digitrace EEG. The overnight take-home kind should be fine. A note on the wet willie -- my son's absence spells were always very short and by the time I did the wet willie he did react and snap out of it -- however, he was having seizures. robin wrote: Does the child have to stay in the hospital during that 24 hours period of testing? I guess I would contact a pediatric neurologist about this? I will watch for a chance today to try the wet willie. Thanks. Meleah ----- Originalsage ----- From: Rob or Sunseri To: pecanbread Sent: Sunday, April 22, 2007 9:38 PM Subject: Re: OT - LKS Well, here's the informal seizure test our neurologist told us to do. When was zoning, she told us to stick a " wet willy " in his ear (wet finger). If it is a seizure, they will not react. If it is zoning for other reasons, they will likely snap out of it. It's not a bad idea to rule out seizures IMO since over 30% of our kids have them. Just make sure you do a minimum of a 24-hour EEG. The 1-2 hour ones almost never pick anything up. We just told the doctor we wanted seizures ruled out, and they ran the EEG. They shouldn't give you a problem since he has ASD. One parent of a child in our community did the same and it turned out they were having 36 seizures in 24 hours. The child was just thought to be spacey all day long, but it was really seizures. - robin wrote: As I read all of this, it makes me wonder if I should have iel tested for any kind of seizure disorders or stuff you guys are discussing. He's never had a noticeable seizure. He does stare off into space, but it has improved dramaticly since starting SCD and all of our biomedicals. I just figured it has always been part of the ASD thing with him just zoning out into his own world. However, my husband is epileptic, so it wouldn't be a shocker if iel had some sort of seizure disorder. My father-in-law is also epileptic. Do you think it is worth doing any testin for, and if so, what tests would I ask for and what would I give for a reason? Meleah OT - LKS We have done a double dose of IVIG every 21 days for 10 months now and his " staring off into space " went away almost immediately. The EEG was done 3 months later and we had no episodes the entire time they monitored him, so it was a waste of the hospital's time, but they couldn't schedule him a bed sooner. There is an immumologist in Louisiana who would probably prescribe it for your son if you wanted to do more. The neurologists here consider it " liguid gold " and " look for reasons to px it " (my neurologist's words), so it is interesting how the opinions differ. I am in Phoenix, AZ. My son gets it covered because of his low IgGs (and an immunologist prescribes it), but the neurologists are in full support and even re-run his cytokine profile prior to our visits, so they can watch his elevations drop! If you need to come out here, I can recommend a few neurologist as the hospital here is " internationally recognized " for neurology. It's often worth it to travel. There is a RMH, so you stay for $10/night and you can usually get a free flight for medical travel. We added HBOT to the IVIG, and are seeing the best result ever. HBOT enhances IVIG, which was one reason we wanted to try it. I see your child also has apraxia. The HBOT really addresses the fine motor control, so it might especially help there. We noted with our neurologist that at one point our son developed a drooping lower jaw, and completely lost all articulation in his speech at the same time. Thus far, HBOT has helped my son with fine-motor control of his fingers and hands and he now crosses midline. We are watching and waiting to see if the muscle control in his jaw improves. He doesn't drool, just has a lazy lower lip and it appeared " out of the blue " -- which is always a scary thing. We are trying to get my son on SCD, but at this point he is grain-free and working towards 100% SCD. He will take some time due to his feeding issues. - Lake wrote: Dear , I believe that definitely it could have affected the outcome of the EEG. IVIG is used sometimes to treat intractable epilepsy, plus it is used to treat LKS, so this would make sense. Is he still on IVIG? My son was on for 9 months with good results, clean EEG, but I could not convince the Canadian medical system to continue, and have not been able to convince any neurologist since I moved to the SE United States to start IVIG again, even though it definitely worked and I documented that with speech therapy testing results before, during, and after. Within three months after stopping IVIG, the EEG started showing spiking again, with a corresponding regression in language. With SCD, I'm seeing some of the same improvements as on IVIG. Are you doing both at the same time? What results have you seen? Thanks, Mother of Virya age 16, autism, LKS, apraxia, aphasia, on SCD since March 07 Rob or Sunseri wrote: Recent Activity 26 New Members 1 New Files Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 We can continue off-list then! - Lake wrote: Dear , Thanks so much for this info. I'm printing out your email so I can follow up with you later. Would like the name of your neurologist. I'll have to find out how out of state insurance coverage works. Fine motor issues are a big thing for my son too, as well as dropping his mouth open and a lot of difficulty with motor coordination at all levels, including speech. What is HBOT? Sounds like you have a very good treatment program going and it would be worth a trip out of state for us. Best, Rob or Sunseri wrote: We have done a double dose of IVIG every 21 days for 10 months now and his " staring off into space " went away almost immediately. The EEG was done 3 months later and we had no episodes the entire time they monitored him, so it was a waste of the hospital's time, but they couldn't schedule him a bed sooner. There is an immumologist in Louisiana who would probably prescribe it for your son if you wanted to do more. The neurologists here consider it " liguid gold " and " look for reasons to px it " (my neurologist's words), so it is interesting how the opinions differ. I am in Phoenix, AZ. My son gets it covered because of his low IgGs (and an immunologist prescribes it), but the neurologists are in full support and even re-run his cytokine profile prior to our visits, so they can watch his elevations drop! If you need to come out here, I can recommend a few neurologist as the hospital here is " internationally recognized " for neurology. It's often worth it to travel. There is a RMH, so you stay for $10/night and you can usually get a free flight for medical travel. We added HBOT to the IVIG, and are seeing the best result ever. HBOT enhances IVIG, which was one reason we wanted to try it. I see your child also has apraxia. The HBOT really addresses the fine motor control, so it might especially help there. We noted with our neurologist that at one point our son developed a drooping lower jaw, and completely lost all articulation in his speech at the same time. Thus far, HBOT has helped my son with fine-motor control of his fingers and hands and he now crosses midline. We are watching and waiting to see if the muscle control in his jaw improves. He doesn't drool, just has a lazy lower lip and it appeared " out of the blue " -- which is always a scary thing. We are trying to get my son on SCD, but at this point he is grain-free and working towards 100% SCD. He will take some time due to his feeding issues. - Lake wrote: Dear , I believe that definitely it could have affected the outcome of the EEG. IVIG is used sometimes to treat intractable epilepsy, plus it is used to treat LKS, so this would make sense. Is he still on IVIG? My son was on for 9 months with good results, clean EEG, but I could not convince the Canadian medical system to continue, and have not been able to convince any neurologist since I moved to the SE United States to start IVIG again, even though it definitely worked and I documented that with speech therapy testing results before, during, and after. Within three months after stopping IVIG, the EEG started showing spiking again, with a corresponding regression in language. With SCD, I'm seeing some of the same improvements as on IVIG. Are you doing both at the same time? What results have you seen? Thanks, Mother of Virya age 16, autism, LKS, apraxia, aphasia, on SCD since March 07 Rob or Sunseri wrote: Recent Activity 26 New Members 1 New Files Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 Dr. Kara at Barrow's Neurological Institute at St. ph's Hosp. We also picked up another one when we were in-patient. His name is pronounced " stir-tracey " as in Dr. " stir-tracey, " but it has a wierd spelling. I liked him too, and he attends our follow-ups with Dr. since he followed us in the hospital. They will try to schedule you with someone else at the front desk, but you can insist on seeing her & get the appointment. Her primary interest is autism and epilepsy, although she is their migraine specialist. - kavi_jain wrote: Hi , I talked to you during Rok's meeting. Could you post me the name of neurologist. Ritvik stares blankly a lot. I have problem of seizures too.I will try your wet finger method too. He stares for 10-11 seconds. If you shake him or say loudly his name , he is back to normal. I was doubting if he has absence seizures. Thanks.. Kavita > Recent Activity > > 26 > New Members > > 1 > New Files > > Visit Your Group > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 Dear , Definitely an LKS type of history, especially the sudden and repeated regressions. Glad you got the IVIG started. I'll be in touch soon to learn about your doctors--you have been lucky to find them. Rob or Sunseri wrote: This is where my son has always been atypical -- in the regression department. He was entered into EI at 23 months, but found to have no social delays only speech. He had been using sign language from the age of 9 months had a normal vocabulary for a child his age -- but it was all signs. Then he began to speak at 2 and took off verbally. Suddenly at almost 3, he regressed and lost all of his words and social skills and began starring off into space and had a few funny head movements as well. He also stopped growing at that time. He had another huge regression at almost 4 and a smaller one at almost 5. Then we started on IVIG and my fingers are crossed. He resumed growing again once we got on the IVIG. I guess I need to learn more about LKS (which is what they were looking for with his 4-day EEG). They did say, " well if he was having the type of seizures we were looking for, we would have put him on IVIG anyway -- so maybe that's why he's doing so well. " - Lake wrote: Dear Meleah, I sent this message before but it bounced back. Trying again: I think a lot of protocols now call for any child with ASD to have an EEG, so that should be a good reason to have one if you need to tell the doctor the reason. To detect LKS, you would have to have an overnight EEG, and you would need a neurologist who is open to looking for ANY types of abnormalities, not just the classic LKS patterns they have read about. Sometimes a 20-minute EEG in the daytime won't show the problem, but sometimes it will. It's absolutely essential that the child falls asleep, because LKS abnormalities only show up during sleep, not waking time. Also, they should not use a sedative like chloral hydrate, because it masks the abnormalities. You have to just sleep deprive your child and then get him to fall asleep naturally. It can be quite an ordeal because kids don't like having the leads put on their head, so I hope it wouldn't be traumatic for you. Dr. Chez uses a sedative called Elavil that works great and does not mask the EEG, but many doctors have never heard of using this and just point blank refuse. Do I sound frustrated? A key question is whether iel ever has had regressions where he lost skills or language he previously had. A history of regressions is typical of LKS. With my son, we got the EEG done and then we sent the actual tracings (not just the report, which is open to interpretation) to Dr. Chez in Chicago area, a world specialist. More than half of neurologists are very resistant to the LKS diagnosis, in my experience, and it's very difficult to get anywhere with them. Or you could ask around on the LKS list on yahoo groups for a good neuro in your area. That is great news that the SCD diet is helping with the staring spells. I used to think my son was just doing an autistic space out, until I found out those were absence seizures. They went away when we started anticonvulsants and then I saw the difference. This SCD diet makes so much sense to me, based on things I've observed about my son over the years. It seems like now the pieces are falling into place, or at least some of the pieces. robin wrote: Does the child have to stay in the hospital during that 24 hours period of testing? I guess I would contact a pediatric neurologist about this? I will watch for a chance today to try the wet willie. Thanks. Meleah ----- Originalsage ----- From: Rob or Sunseri To: pecanbread Sent: Sunday, April 22, 2007 9:38 PM Subject: Re: OT - LKS Well, here's the informal seizure test our neurologist told us to do. When was zoning, she told us to stick a " wet willy " in his ear (wet finger). If it is a seizure, they will not react. If it is zoning for other reasons, they will likely snap out of it. It's not a bad idea to rule out seizures IMO since over 30% of our kids have them. Just make sure you do a minimum of a 24-hour EEG. The 1-2 hour ones almost never pick anything up. We just told the doctor we wanted seizures ruled out, and they ran the EEG. They shouldn't give you a problem since he has ASD. One parent of a child in our community did the same and it turned out they were having 36 seizures in 24 hours. The child was just thought to be spacey all day long, but it was really seizures. - robin wrote: As I read all of this, it makes me wonder if I should have iel tested for any kind of seizure disorders or stuff you guys are discussing. He's never had a noticeable seizure. He does stare off into space, but it has improved dramaticly since starting SCD and all of our biomedicals. I just figured it has always been part of the ASD thing with him just zoning out into his own world. However, my husband is epileptic, so it wouldn't be a shocker if iel had some sort of seizure disorder. My father-in-law is also epileptic. Do you think it is worth doing any testin for, and if so, what tests would I ask for and what would I give for a reason? Meleah OT - LKS We have done a double dose of IVIG every 21 days for 10 months now and his " staring off into space " went away almost immediately. The EEG was done 3 months later and we had no episodes the entire time they monitored him, so it was a waste of the hospital's time, but they couldn't schedule him a bed sooner. There is an immumologist in Louisiana who would probably prescribe it for your son if you wanted to do more. The neurologists here consider it " liguid gold " and " look for reasons to px it " (my neurologist's words), so it is interesting how the opinions differ. I am in Phoenix, AZ. My son gets it covered because of his low IgGs (and an immunologist prescribes it), but the neurologists are in full support and even re-run his cytokine profile prior to our visits, so they can watch his elevations drop! If you need to come out here, I can recommend a few neurologist as the hospital here is " internationally recognized " for neurology. It's often worth it to travel. There is a RMH, so you stay for $10/night and you can usually get a free flight for medical travel. We added HBOT to the IVIG, and are seeing the best result ever. HBOT enhances IVIG, which was one reason we wanted to try it. I see your child also has apraxia. The HBOT really addresses the fine motor control, so it might especially help there. We noted with our neurologist that at one point our son developed a drooping lower jaw, and completely lost all articulation in his speech at the same time. Thus far, HBOT has helped my son with fine-motor control of his fingers and hands and he now crosses midline. We are watching and waiting to see if the muscle control in his jaw improves. He doesn't drool, just has a lazy lower lip and it appeared " out of the blue " -- which is always a scary thing. We are trying to get my son on SCD, but at this point he is grain-free and working towards 100% SCD. He will take some time due to his feeding issues. - Lake wrote: Dear , I believe that definitely it could have affected the outcome of the EEG. IVIG is used sometimes to treat intractable epilepsy, plus it is used to treat LKS, so this would make sense. Is he still on IVIG? My son was on for 9 months with good results, clean EEG, but I could not convince the Canadian medical system to continue, and have not been able to convince any neurologist since I moved to the SE United States to start IVIG again, even though it definitely worked and I documented that with speech therapy testing results before, during, and after. Within three months after stopping IVIG, the EEG started showing spiking again, with a corresponding regression in language. With SCD, I'm seeing some of the same improvements as on IVIG. Are you doing both at the same time? What results have you seen? Thanks, Mother of Virya age 16, autism, LKS, apraxia, aphasia, on SCD since March 07 Rob or Sunseri wrote: Recent Activity 26 New Members 1 New Files Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 Dear Robin, What I've been told is that any child with ASD and especially history of regression needs to have an EEG. I think it's in the protocols. He would not need to stay asleep the whole time, just his normal night's sleep would be fine. The hard thing is finding an experienced neuro to read the results, and it's hard to get the attention of the world specialists, so finding a recommended pediatric neuro who is open minded is a good first step. Try to get the tracings or at least a copy of the report that you could send to specialists or take to appointments if you want a second opinion. It shouldn't be too hard to justify, since it's in the CAN and DAN protocols as far as I know. LKS was also written about as the lead article in Pediatrics medical journal in September 1999, and Dr. Chez was one of the lead authors. (The article is about brain surgery but don't worry, that really is not necessary. Meds and more natural treatments work just as well if not better. I'm just mentioning it because Pediatrics is a very prestigious journal and it was the lead article, and all the top guys came together as authors of the article, even the guys who don't normally get along with each other. So the idea of having an EEG has a lot of research behind it.) Getting the EEG done is a bit of trouble but hopefully it would be worth it to find out. robin wrote: Thanks for the info. Yes, he has had regression where he lost language. He was developing completely typically up until around 14 or 15 months. He had about five or six words, was interacting with his brother, ect. I kept very detailed records in his baby book of his monthly development, habits, ect. Everything was normal until some time around 14 or 15 months. I was concerned at his 12 month check up that he wasn't pulling up yet and he was self stimming by bumping his head on the wall gently. However, our pediatrician said this was still normal for a 12 month old to do, and my sister-in-law said her daughter was still doing it as well. She is only a week older than my son, and she is completely neurotypical. His interaction was good though. There were a couple of things to be concerned about like I mentioned, but his language and motor sskills were on track. He didn't have any 15 month vaccinnes, so I can't contribute the regression to those. We do believe that the flu vaccinne was a kicker for him, but I won't go into all of that right now. Anyway, do you think it merits having an EEG done? If I sent the results to a world specialist to interpretted, would it really matter which pediatric neurologist performed the EEG? Does iel need to remain asleep the entire time of the 24 hour EEG? I think he would fall asleep on his own even though he would certainly be bothered by the leads on his head before he went to sleep. He is a sound sleeper at night, too, and only wakes if he needs to use the bathroom. He usually sleeps 10 or 11 hours. What do you think? I can ask my husband's neurologist if he can recommend a really, really good pediatric neurologist for me. We know him outside of the doctor/patient relationship, so I can explain the whole reasoning why I'm even wanting to have the test run without him thinking I'm a nut case. Give me any thoughts and suggestions. Meleah OT - LKS We have done a double dose of IVIG every 21 days for 10 months now and his " staring off into space " went away almost immediately. The EEG was done 3 months later and we had no episodes the entire time they monitored him, so it was a waste of the hospital's time, but they couldn't schedule him a bed sooner. There is an immumologist in Louisiana who would probably prescribe it for your son if you wanted to do more. The neurologists here consider it " liguid gold " and " look for reasons to px it " (my neurologist's words), so it is interesting how the opinions differ. I am in Phoenix, AZ. My son gets it covered because of his low IgGs (and an immunologist prescribes it), but the neurologists are in full support and even re-run his cytokine profile prior to our visits, so they can watch his elevations drop! If you need to come out here, I can recommend a few neurologist as the hospital here is " internationally recognized " for neurology. It's often worth it to travel. There is a RMH, so you stay for $10/night and you can usually get a free flight for medical travel. We added HBOT to the IVIG, and are seeing the best result ever. HBOT enhances IVIG, which was one reason we wanted to try it. I see your child also has apraxia. The HBOT really addresses the fine motor control, so it might especially help there. We noted with our neurologist that at one point our son developed a drooping lower jaw, and completely lost all articulation in his speech at the same time. Thus far, HBOT has helped my son with fine-motor control of his fingers and hands and he now crosses midline. We are watching and waiting to see if the muscle control in his jaw improves. He doesn't drool, just has a lazy lower lip and it appeared " out of the blue " -- which is always a scary thing. We are trying to get my son on SCD, but at this point he is grain-free and working towards 100% SCD. He will take some time due to his feeding issues. - Lake wrote: Dear , I believe that definitely it could have affected the outcome of the EEG. IVIG is used sometimes to treat intractable epilepsy, plus it is used to treat LKS, so this would make sense. Is he still on IVIG? My son was on for 9 months with good results, clean EEG, but I could not convince the Canadian medical system to continue, and have not been able to convince any neurologist since I moved to the SE United States to start IVIG again, even though it definitely worked and I documented that with speech therapy testing results before, during, and after. Within three months after stopping IVIG, the EEG started showing spiking again, with a corresponding regression in language. With SCD, I'm seeing some of the same improvements as on IVIG. Are you doing both at the same time? What results have you seen? Thanks, Mother of Virya age 16, autism, LKS, apraxia, aphasia, on SCD since March 07 Rob or Sunseri wrote: Recent Activity 26 New Members 1 New Files Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 Thanks a lot.........Kavita > > Recent Activity > > > > 26 > > New Members > > > > 1 > > New Files > > > > Visit Your Group > > Quote Link to comment Share on other sites More sharing options...
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