Off the Train

[Guest guest]

The doc we saw was a medical doc doing biomed. I believe I said that the Amantadine intereacted with Seroquel XR, which I damn sure told the psych who prescribed the Seroquel. I had no way of knowing they intereacted while I was in the doc's office, and I've spent enough sleepless nights second guessing myself to not dig out their interaction *before* we took it. So much for trusting a Board Certified doc.

After a week at Memorial Herman with too many teams of docs to count, *they* came to the conclusion that the long term use of the top three TD causing psychotropics (in addition to the interaction, overdose and cold turkey which kick started it) is the culprit and muddies the AU\ADHD diagnosis. I'm thinking I'm listening to them.

As for the legal issues involved, I was a civil litigation paralegal for nine years....and thanks to Tort Reform I can't get any lawyer to take the case. Don't think that the intimate knowledge I have on both ends of that spectrum doesn't cause me to want to throttle someone.

I apologize if it offends folks (and I'm thrilled for the folks for whom all of this worked), but the smartest thing I ever did was listen to one Neurologist at UT and took him off of every psychotropic; Hydrocortisone; Oxytocin; Methylated Vitamin D; Anti Virals; Milkshake and god knows what else. It was the scariest decision I've ever made..I was soo afraid. Once it all cleared out, I got to see my kid at ground zero for the first time in years. I also got my kid out of a fog and actually got lucid days, every day with zero aggression. He went two *years* of reading levels in six months; 1st to 4th Grade Math in six months, and passed every TAKS test.

Sure, there's significant issues still there but nothing so bad that I can't accept, love and work with where he is today and certainly no reason to ever go back down that road. We have too many oddball medical issues that deserve tracking down the underlying medical conditions....but I'll not make it the "be all end all."

If all this means we're not the kind of folks that should be on the AU list..well then.....I wish there was a place for families who got off the train.

~C

Crystal,Sent you a private email about Koenig. I do not know her stance on supps or mito cocktail however. Dr. Frye is very open to supplements and understands adverse reactions ( or at least acknowledges it - which is big in my book!) He does not push meds and LISTENS to Moms who report adverse effects. I have heard from parents whose children have seen Dr. Koenig that she can be dismissive of such. I have no stake in which doctor you see, but my son having been a long term patient of Dr. Frye, I can honestly say he has been there every step of the way for us. I know my son is not his most severely affected patient and is relatively healthy compared to many he sees, but when medication problems come up or issues I am not sure how to handle, he has always responded promptly. Feel free to write me back to discuss further if you like... > > > > > > > > > >  > > > > > > We had testing done a few years ago with Dr Frye. It was a bunch of bloodwork and it took about 6 weeks for it to come back because it had to be sent out to a special lab. We had to do it at the hospital because Quest and Labcorp wouldnt do it. > > Dara> > > > > > > > > > > > > > > > From: Crystal <singleparentasd@>> > To: Texas-Autism-Advocacy > > Sent: Thu, June 9, 2011 4:55:14 PM> > Subject: Mitochondrial Testing> > > >  > > > > > > > > > > > > > > Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS?> >  > > Anyone have any information re: mitochondrial testing for adults in Houston?> >  > > Thanks> >  > > ~Crystal> >>

[Guest guest]

I'm confused. I don't believe that vitamin D, Oxytocin (a hormone) or Amantadine are psychotropics? Here is the list I have...http://en.wikipedia.org/wiki/List_of_psychotropic_medications#A

I know many children take at least some of the drugs on this list at least from time to time, and in some cases they are necessary. I have eliminated all prescription meds as well and was very concerned about a Pediatric Neurologist who prescribed my ten year old child 75mg of Zoloft. With that said it's important to note that when I removed the Zoloft I did it slowly.(He was first prescribed Zoloft from this Ped Nuero at age 4)  We have replaced all psychotropic drugs with things like Amantadine, and B-12 and Oxytocin with results that were more beneficial than all the ADHD meds and psychotropics we ever tried. We did so slowly and carefully and we monitor his improvement and remove things as he improves. Not taking drugs to treat Autism should not worry you about not being on this list, we all do what we feel is right because there is no magic bullet. The doctors don't know it or we'd all be cured. A very small percentage of children recover. But many do improve. Unfortunately each path is different. We need each other to be open minded if we are ever to be guided. I am really glad your son is better it's so hard to know from where the behavior comes. At least now you have a baseline. I hope he continues to improve.

Trina

 

The doc we saw was a medical doc doing biomed.  I believe I said that the Amantadine intereacted with Seroquel XR, which I damn sure told the psych who prescribed the Seroquel.  I had no way of knowing they intereacted while I was in the doc's office, and I've spent enough sleepless nights second guessing myself to not dig out their interaction  *before* we took it.  So much for trusting a Board Certified doc. 

 

After a week at Memorial Herman with too many teams of docs to count, *they* came to the conclusion that the long term use of the top three TD causing psychotropics (in addition to the interaction, overdose and cold turkey which kick started it) is the culprit and muddies the AU\ADHD diagnosis.  I'm thinking I'm listening to them. 

 

As for the legal issues involved, I was a civil litigation paralegal for nine years....and thanks to Tort Reform I can't get any lawyer to take the case.  Don't think that the intimate knowledge I have on both ends of that spectrum doesn't cause me to want to throttle someone. 

 

I apologize if it offends folks (and I'm thrilled for the folks for whom all of this worked), but the smartest thing I ever did was listen to one Neurologist at UT and took him off of every psychotropic; Hydrocortisone; Oxytocin; Methylated Vitamin D; Anti Virals; Milkshake and god knows what else.  It was the scariest decision I've ever made..I was soo afraid.  Once it all cleared out, I got to see my kid at ground zero for the first time in years.  I also got my kid out of a fog and actually got lucid days, every day with zero aggression.  He went two *years* of reading levels in six months; 1st to 4th Grade Math in six months, and passed every TAKS test. 

 

Sure, there's significant issues still there but nothing so bad that I can't accept, love and work with where he is today and certainly no reason to ever go back down that road.  We have too many oddball medical issues that deserve tracking down the underlying medical conditions....but I'll not make it the " be all end all. "   

 

If all this means we're not the kind of folks that should be on the AU list..well then.....I wish there was a place for families who got off the train. 

 

~C

 

 

Crystal,Sent you a private email about Koenig. I do not know her stance on supps or mito cocktail however. Dr. Frye is very open to supplements and understands adverse reactions ( or at least acknowledges it - which is big in my book!) He does not push meds and LISTENS to Moms who report adverse effects. I have heard from parents whose children have seen Dr. Koenig that she can be dismissive of such.

I have no stake in which doctor you see, but my son having been a long term patient of Dr. Frye, I can honestly say he has been there every step of the way for us. I know my son is not his most severely affected patient and is relatively healthy compared to many he sees, but when medication problems come up or issues I am not sure how to handle, he has always responded promptly. Feel free to write me back to discuss further if you like... > > > > > > > > > >   > > > > > > We had testing done a few years ago with Dr Frye.  It was a bunch of bloodwork and it took about 6 weeks for it to come back because it had to be sent out to a special lab.  We had to do it at the hospital because Quest and Labcorp wouldnt do it. > > Dara> > > > > > > > > > > > > > > > From: Crystal <singleparentasd@>> > To: Texas-Autism-Advocacy

> > Sent: Thu, June 9, 2011 4:55:14 PM> > Subject: Mitochondrial Testing> > > >   > > > > > > > > > >

> > > > Anyone had experience with pediatric mito testing at UT in Houston?  We're waiting to hear the barrier questions before getting an appointment.  Any idea on Federal BCBS?> >   > > Anyone have any information re: mitochondrial testing for adults in Houston?> >  > > Thanks> >  > > ~Crystal> >>