tag:blogger.com,1999:blog-33052404.post4097237646239157596..comments2024-02-13T21:31:57.980-04:00Comments on Facing Autism in New Brunswick: Conor's 3rd Tonic Clonic (Grand Mal) SeizureAnonymoushttp://www.blogger.com/profile/05838571980003579163noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-33052404.post-57234634744385291282014-06-10T08:09:48.619-03:002014-06-10T08:09:48.619-03:00True. People should know and should aware of convu...True. People should know and should aware of <a href="http://www.ehealthcity.com/convulsions-in-children" rel="nofollow">convulsions in children</a>. Thanks for sharing.ehealth cityhttps://www.blogger.com/profile/17782219750969903651noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-14373301523922725472014-05-29T21:51:48.738-03:002014-05-29T21:51:48.738-03:00My son started getting seizures in July 2012, the ...My son started getting seizures in July 2012, the week before his 12th birthday. They became more severe and more frequent, and by the end of the year he was getting a seizure a week.<br />In mid 2013 we started giving him sea salt and methylation supplements (B12, methyl folate, TMG, B6/P5P, choline) and Enhansa, a powerful anti-inflammatory/anti-oxidant.<br />Almost immediately, his behavior and mood improved. The seizures became less frequent and less severe. His last seizure was in November 2013 and his functioning continues to improve. to read more about methylation, see http://mthfr.net/<br />Best wishes to you and Conor<br />Stevenoreply@blogger.comtag:blogger.com,1999:blog-33052404.post-86204284390174557092014-05-29T17:51:41.545-03:002014-05-29T17:51:41.545-03:00Anonymous re the ND crowd: I share your ("fru...Anonymous re the ND crowd: I share your ("frustration" isn't strong enough...) re this crew, but can't call them names: they do, after all, have a diagnosis. <br /><br />The problem lies in the APA, who are telling people "what autism really is" and shafting everyone in the process, with the smiling support of shrinks, gov'ts, Agencies, Schools... and the NDs.VMGillenhttps://www.blogger.com/profile/02923257331456662158noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-40470837390191752212014-05-28T12:52:38.993-03:002014-05-28T12:52:38.993-03:00Know you're not alone Harold. Same thing with ...Know you're not alone Harold. Same thing with my child. Tonic Clonic seizures with severe autism. Terrifying and heartbreaking for a parent to watch. Glad that Conor is doing better now. The most terrifying part is not knowing when they will happen. My child's seizures just happen out of the blue like this too. No warning at all. It is a very scary and stressful state way to live, always being on guard.<br /> <br />Will they increase his meds with this breakthrough seizure? Did he actually seize for 3-4 minutes? How long before he comes out of the post ictal state (if you don't mind me asking).<br /><br />The ND crowd is simply sickening. I think the worst offenders are the parents of high functioning kids writing blog after blog of how great and quirky and fun their "Auties" are (Jean W from the blog Stimeyland has to be the worst). Sorry but these parents are just complete ASSHOLES because they have no idea what autism really is IMO. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-33052404.post-65023826890885076882014-05-27T16:29:36.086-03:002014-05-27T16:29:36.086-03:00AMEN! My son is 14 and MUCH the same as Conor. S...AMEN! My son is 14 and MUCH the same as Conor. Stephen had his first seizure about 2 months ago.<br /><br />I, too, am SO TIRED of the media making out like autism is just a "quirky" thing. It's hellish and I want my son to get better. I'm sick of people acting like we're the bad guys if we don't spew the "I don't want my child to be 'CURED'" claptrap.<br /><br />My son is not potty trained, is obese from the Risperdal, and displays SIBs. It is often hell on earth to get through a day.MJnoreply@blogger.comtag:blogger.com,1999:blog-33052404.post-70423233995363104972014-05-27T14:56:29.461-03:002014-05-27T14:56:29.461-03:003-4 minutes! That's a long time - my guy's...3-4 minutes! That's a long time - my guy's been having seizures since he participated in the Risperdol pediatric protocols... but his haven't gone as long as two minutes. Meanwhile, he's been on so many different AEDs, at ever-increasing doses - which have a net effect of doping him up and significant weight gain. I feel the medications are as problematic as the seizures! I've never been able to get a direct answer when I ask what would happen if we stopped the meds... VMGillenhttps://www.blogger.com/profile/02923257331456662158noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-58285029393381490942014-05-27T14:19:45.144-03:002014-05-27T14:19:45.144-03:00Thank you so much for letting me post the link. I...Thank you so much for letting me post the link. I will have it on my blog shortly. All the best, HeatherMommie that Gets Ithttps://www.blogger.com/profile/04507449626509854193noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-66834999264088553382014-05-27T14:11:50.859-03:002014-05-27T14:11:50.859-03:00MTGI feel free to post a link if you wish, I thin...MTGI feel free to post a link if you wish, I think it is important for people, parents in particular, to know some of the realities that sometimes accompany an autism disorder. They aren't likely to be aware of those possibilities from listening to mainstream media.Anonymoushttps://www.blogger.com/profile/05838571980003579163noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-67241077629549037042014-05-27T12:25:58.486-03:002014-05-27T12:25:58.486-03:00I am so sorry to hear about Conor suffering anothe...I am so sorry to hear about Conor suffering another seizure. It is good to hear that he has recovered and did not have to go to the hospital. I would like to ask if I could post a link on my blog for this story. I think it is so important that people see that there is so many frightening and very real sides of autism that just do not get enough media attention, why, I do not know. Thank you! Wishing you all the best and Conor well! Best regards, HeatherMommie that Gets Ithttps://www.blogger.com/profile/04507449626509854193noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-22867640110215808972014-05-27T11:51:40.157-03:002014-05-27T11:51:40.157-03:00I hope this is an isolated seizure for Conor. My s...I hope this is an isolated seizure for Conor. My son-who also has classical autism-started to have seizures as a teenager also. Thankfully, he can take Lamictal without the rash reaction (so far). However, he does have breakthrough seizures at times and his dosage has increased. Around the time he turned 18, he had several unstable months. We're not sure if hormones, stress, etc contributed as he is non-verbal and can't tell us what was different then. You also have to weigh whether or not to increase meds or wait it out as high levels have their own drawbacks and it is near impossible to reduce after you raise. Right now, they have been controlled for about six months. Very grateful, but I always feel vigilant and wonder about sub-clinical activity when he is agitated or tired. <br /><br />As always, I agree that the neurodiversity crowd cannot speak for my son at all and they aren't here to help in a practical way either. I'm always glad when someone is able to function, but it is a disservice to imply that it is easy to escape the form of autism that our relatives have. <br /><br />In any case, Best wishes for Conor and your family.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-33052404.post-69649877502561905702014-05-27T01:56:16.600-03:002014-05-27T01:56:16.600-03:00I'm sorry to hear the news about Conor. I hop...I'm sorry to hear the news about Conor. I hope he's okay. I agree that members of the ND movement should not trivialize autism. I question whether they are truly autistic if they are not disabled by their autism.jonathanhttps://www.blogger.com/profile/14972394536850151087noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-77676406445850327562014-05-27T01:07:02.855-03:002014-05-27T01:07:02.855-03:00As much as you have hundreds of followers on line....As much as you have hundreds of followers on line. In situations like this you are alone. <br />I'm glad Conor is doing better but his future is scary at best.<br />I hope that change happens soon.Anonymousnoreply@blogger.com