[tri-med] Re: ? about altering neuron firing and serotonin


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Sent: Saturday, May 19, 2007 7:06 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: ? about altering neuron firing and serotonin

In a message dated 5/19/07 9:07:05 AM, plugginalongpv@xxxxxxxxxxxxx writes:


> And he'll see us again in 4 months.
> 

I think he meant four months if things settle down, but one month if you 
don't see some positive changes. 


Nope Nan...that's not the way CMS works. They do 1 clinic per month and he
wants us back in 4 months. To get in on the spur of the moment in next
month's clinic would be next to impossible. If something was going on that
we felt was a real problem that couldn't wait 4 months I would first call
our CMS case nurse and explain the problem who would then try to get to the
doctor through his regular practice (not CMS). The nurses and office staff
at his regular practice are like a pack of pitbulls (it's very hard to get
to the doctor) and they treat his CMS patients as lesser important
...probably because he makes little or no money from his time with CMS...it
may actually be donated time?? Sooo...anyway...if I absolutely needed a
doctors input I would call Devon's pediatrician or if it was outside of
regular business hours I'd take him to the ER. There are many things I like
about CMS...but this type of thing is one of the things I DON'T like :O(

When we tried the Clonidine it was prescribed by his pediatrician...so when
1/2 the smallest dose knocked Devon out, I called Dr. Thorpe's office and
she called me back very quickly. When I told her how it affected him she
agreed with us that he shouldn't keep taking it. I've toyed with the idea of
seeing if Devon's Trazodone needed the dosage to be increased...simply
because Devon was under a different pediatrician's care when it was
prescribed. 

I don't know of any seminars or conferences in the area that might address
the things I have questions about. I may ask his pharmacist...he's pretty
helpful most of the time. 


Love,
Penny...loving & devoted wife to Joe, the best husband in the world...mom to
Nick (16 yrs old...lover of Fishing, Dragons, Turtles, Blue Collar Comedy
Tour, RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (11
yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Elmo, & food in
general. Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper
the Wonder Dog...our 10? year old yellow lab adopted from FL Lab Rescue
12/13/02 :o) Please visit the webpage my wonderful friend Karen made for me
on our trisomy listserv at:
http://www.trisomyonline.org/victor.html      
AND...Devon's moment of glory in Exceptional Parent Magazine...
http://www.eparent.com/familiarfaces/ffaces_4_01.htm
AND...see our Trooper on FL Lab Rescue's website at:
http://www.labradorrescue.net/success/index.html (Look for the name Trooper)
AND :o) http://livingwithtrisomy13.org/album9.htm
AND http://web.coehs.siu.edu/Grants/TRIS/
"Those who matter don't judge me .... those who judge me don't matter."

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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