tag:blogger.com,1999:blog-33052404.post1041368134032961925..comments2024-02-13T21:31:57.980-04:00Comments on Facing Autism in New Brunswick: Our Happy Conor is Back! And Dad Is Happy Too!Anonymoushttp://www.blogger.com/profile/05838571980003579163noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-33052404.post-91418007008636879652015-02-06T00:47:25.077-04:002015-02-06T00:47:25.077-04:00Both of my children, girl and boy, with autism wer...Both of my children, girl and boy, with autism were on a plethora of anti seizure medication and mood stabilizers. And each time a new behavior raised or a different seizure showed, they either upped the dosage or tried a new medication. Felt like I signed up my kids to be guinea pigs and I was just the tester administering all these new drugs. Meanwhile the mad scientists behind the pharmaceutical desks think of new drugs that may or may not help a child but more then likely have nasty side affects. This was my life in a nutshell. I had my children's neurologists on speed dial, next to schools, hospitals and insurance companies. Occasionally I used the phone to call friends and family. <br /><br />For many years I lived the lifestyle of drugging my children for the necessary need to keep them alive. Even if it meant one of them would suffer kidney disease or the other would develop a thyroid condition leading to some nasty behaviors. I had to keep their behaviors contained. They had to be able to attend school and not attack their schoolmates or teachers. Had to have them sleep at night so I could "survive". It was crucial this all had to happen. I look back at those days and just wish I went down another route. My children are 26 and 23. Both extremely compromised by medical conditions developed from the side affects of certain behavioral and anti seizure medication. Doctors just look at what's in front of them and automatically diagnose without truly digging to find out the exact problem. My daughter had a vitamin b deficiency that caused seizures. My son had a genetic condition causing autistic features, seizures and a movement disorder. This particular condition was caused by a missing protein. Also a unusually high potassium deficiency that mimicked colitis disease. It's like you have to be not only their voice and advocate but their nurse, doctor, and behavioral therapist. I fought real hard to find these small medical discoveries. We are now finally on the right track to keeping both my kiddos alive but without the extra side affects that go along with it. Keep digging. I'm sorry you had to go thru this. It's disgusting how doctors just do the bare minimum these days.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-33052404.post-87809452408933450522015-01-23T01:29:06.108-04:002015-01-23T01:29:06.108-04:00My autistic son was on depakote for years. There w...My autistic son was on depakote for years. There was always the suspicion that by first taking it, it caused so many side effects that it led to self injurious behavior. Then, one day, after years of taking this drug, he suddenly developed hyperammonia, which led to the most savage self abuse we've ever seen. Depakote is the worst drug for individuals with autism. It is most baffling why drug manufacturers and autism researchers have still not exposed why depakote is one of the worst drugs for autism and epilepsy. My guess, from what I've seen with our autistic child, is that this drug causes extreme stomach upset in autistic individuals, and as such leads to self abuse.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-33052404.post-10689848693191685182015-01-22T19:19:28.782-04:002015-01-22T19:19:28.782-04:00Sadly, trying to find effective seizure meds is so...Sadly, trying to find effective seizure meds is somewhat like playing a form of Russian roulette. I am thankful my gal does well on a bit of good old Valproic Acid and a tiny bit of Clobazam. Hope you can find a good balance for your young gentleman soon. (Teen years are the hardest, that's for sure.)Clairehttps://www.blogger.com/profile/13070297384173508509noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-38555475571408206392015-01-22T13:39:51.071-04:002015-01-22T13:39:51.071-04:00Which is why the medical community must listen to ...Which is why the medical community must listen to parents, who are most in tune with their children...WendyMcLeodMacKnighthttps://www.blogger.com/profile/04830981147524921562noreply@blogger.com