Guest guest Posted June 29, 2010 Report Share Posted June 29, 2010 Jaundice poisoning is a rule out dx, but there are tests that help. One symptom that is helpful is dx'd by an ABR test. This shows auditory neuropathy-AN. The ENT group runs this test under sedation or a 'cooperative quiet child' sits in a chair while positive and negative polarity clicks ate made in the ears. The test is checking for auditory nerve damage. The same is true for vision CVI - cortical vision impairment. Fine motor issues, constipation, swallowing difficulties are a related to athetoid CP. Now I thought, not my kid, he's not that bad! But imagine if you couldn't move quite right or vision and hearing was confusing. Wouldn't you throw fits? Wouldn't security in your schedule be something that you would hold on to for dear life? Call me Elliott 217-778-5493 Sent from my iPhone On Jun 23, 2010, at 9:44 PM, Randy son <randy.191@...> wrote: > , how was your son diagnosed,,,both my boys have issues and we are > hoping to start treatment with Dr, this summer. Both my boys had > jaundice at birth and my youngest (now D'd autistic) was VERY sleepy for the > first six months of life.I thought it was a blessing! ( > > > > _____ > > From: [mailto: ] On Behalf Of > Elliott > Sent: June 21, 2010 10:41 AM > > Subject: Re: Note to other " old timers " > > > > > > I would like to respond to your rant. I am a parent of a " D'd " > autistic child. We investigated only to find out later my son had > Kernicterus- jaundice poisoning. > > Parents are overwhelmed, disappointed, detected and confused with this > disease. It is no wonder that they do not 'jump on the band wagon' > > Elliott > > Sent from my iPhone > > On Jun 21, 2010, at 8:15 AM, Ann/ MacLaren > <annmaclaren@... <mailto:annmaclaren%40comcast.net> > wrote: > >> OK, this email is for all the old timers out there. I am usually a >> lurker so now I will write:} I am feeling a little jaded these days. >> I need a vent session on how utterly frustrating it is when parents >> want help with their ASD kids yet they don't want to educate >> themselves or invest in the time to learn more :} Like Marsha Hinds, >> I too have twins going off to college, driving and doing all the >> things I never expected after being a " kid " . I try to spread >> the word and champion the cause but I have also had to pull away at >> times and take a mental holiday because it does become so frustrating. >> >> I live in Indiana so no local doctors (We see ). I get >> lots of inquires about my boys because they are poster children for >> what can be achieved with kids on the spectrum. BUT, I have also >> found most people just want that superficial " fell good " image but >> don't want to do anything that becomes an inconvenience on their >> part. It amazes me how parents will continue to do things they >> aren't satisfied with the results yet do nothing to change that- >> not even educate themselves when information is given directly to >> them. They also feel it is the school and local doctor's job to fix >> their kid. I know ASD students with CFS who are on every sleep/awake >> drug out there. The parents acknowledge this but they " fixed " the >> problem by manipulating the environment and allowing sleep time. >> Even knowing my son no longer has that problem and even directly >> giving them Goldberg's website with CFS they do nothing. They are >> amazed how well my boys have done 5 years later after we are " living >> proof " . These parents continue to adapt the environment with extra >> sleep time and see the same doctor. It is really hard for me to >> accept an invitation to speak on autism from these people because it >> really doesn't mean anything. Argh! >> >> I also find it interesting that the majority of parents won't travel >> for autism treatment yet they will travel to go on a vacation to >> Disney World or Cancun. Umm priorities.. As soon as you say a doctor >> is out of state, the parent looses interest and comments " Too bad >> the doctor is out of state, I would have seen him if he was closer " >> Umm, would the response be the same if their child had cancer or HIV >> and had to go out of state for tx?.So these parents flounder on the >> side lines not really happy with their current neighborhood >> physician yet very vocal within the school and local autism support >> groups on what other people need to do for their kid. >> >> I find it interesting that most support groups shy away from any >> medical intervention discussion-it's all about services and the >> school. The cop out answer is " Every parent needs to make their own >> choices on what is best for their child " . I totally agree with that >> statement within text. When my kids were younger, I wanted to hear >> EVERYTHING that was out there so I could get educated and know >> quackery from medically sound. Knowledge not ignorance is the >> foundation of good choices. It is surprising how many people really >> don't know anything about a program or therapy they send their kid >> off to. The scarier thing is the person giving a recommendation >> doesn't have a good grasp either. Again, people don't want to do >> their homework. Therapy and medical intervention has to be >> " convenient " . OK, you'll have to wait another generation for that >> to happen. I know parents who do some medical intervention that is >> HARMFUL and they know little about the procedures or long term >> effects. Yet, >> they have done incredible research regarding IEPsand have a vast >> knowledge of what the school and everyone else should be doing for >> their child. I wish they put that same enthusiasm and effort into >> helping their child medically. Somehow the big picture is missing a >> few pieces:} >> >> I vacillate between wanting to save every child and tired of beating >> my head against the wall. I get renewed energy when I get that phone >> call or email from a parent you know has that " spark " and desire to >> help their child and will do something. I also email Dr. Goldberg's >> website to those searching for more information and willing to offer >> up my experience. BUT, if parents don't invest their own time to >> read and learn to help their own child, then I am also less inclined >> to spend time away from my own kids to teach them because I know it >> will go nowhere. I don't want to feel the way I do. I just ache for >> those kids who will never reach their own fully potential-whatever >> that might be. I'll go back to lurking now:} >> >> >> Quote Link to comment Share on other sites More sharing options...
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