[tri-med] Need Input on Clonidine

Hi All :o)
Sorry I've been remiss in reporting on our Chicago trip...still recuperating 
really...will try this weekend :o) 
While at the medical clinics in Chicago our first Doc was the Developmental 
Ped. As a person/doc I wasn't overly impressed with the man...not a real 
personable guy and it seemed like he had kind of a canned response??? But 
anyways...he DID give me one pearl of wisdom...maybe...when he suggested we may 
want to try Clonidine for Devon. He said it would regulate sleep patterns which 
is what he takes Trazodone for...and it works. BUT he said the Clonidine can 
also help with hyperactivity and/behavioural issues. THAT got my attention. BUT 
as with all medications...they make us nervous. It just so happened that I was 
telling Michelle (TRIS) about his suggestion and she told me her daughter is on 
it and that it's done good things for her with regard to behaviour. She DID say 
it could knock him out for the first little while when he starts it but should 
be able to get used to it without it changing his personality...something we're 
not willing to part with :O) She told me that if we miss a dose it can mess 
with blood pressure...THAT worries us. What I've found about it online makes it 
sound like it messes with blood pressure even if ya don't miss a dose...is that 
true??? I'm NOT good with online searches as a rule so if anyone has something 
intelligent to add I'd love to hear it...pros...cons...etc..please keep 
personal judgements out of it. As I said...we're not wild about admitting 
defeat and going the medication way as it is...so personal judgements are only 
going to serve to make me very defensive and unlikely to take any 
advice/information in a good light. Don't mean to sound snotty...but I've seen 
it before :O)
I have spoken to Devon's Geneticist about it and he...along with his 
Fellow/Resident think it may be worth trying...they got to see Devon "having a 
cow" Monday when we went for our yearly followup :o( One of MY problems is that 
I care too much what other people think. I HATE the thought that people who may 
witness some of his behavioural issues and think he's like that ALL the 
time...he's not a bad child...but still I worry mostly that he'll whack someone 
and I'm not always fast enough to catch him. Some of you who met Devon at the 
conference got smacked...and depending upon how you handled it...he may have 
cut back on the smacking...but for some who tend not to want to get stern with 
him...he just keeps on smacking.  And that doesn't work real well anyway. It's 
exhausting running interferance all the time and makes me reluctant to go 
anywhere or have anyone come over as well :O( Most of the time he just laughs 
when we try to make him stop. It's not a maliscious act...more when he's super 
excited/happy, agitated, impatient or frustrated...but still unacceptable...and 
we're scared to death he will get out of control when he gets a little bigger 
so that we can't handle him :o( Devon is a loveable somewhat mischievous and 
happy kinda guy...he's very much loved...but he NEVER stops...he smacks and 
nothing we've tried as an intervention has worked...at least not consistantly.  
I have also spoken to our pharmacist and he says it's VERY popular with kids 
who have hyperativity/ADHD, etc...he too thinks it may be worth a try. I 
emailed our Ped today and explained the situation to her and she already called 
me back. She is calling in the lowest dosage...and said that we could try it 
once a day in the morning (the effects are not long acting from what she 
said...so if we gave it to him at night it would lose effectiveness for the 
daytime). She said to double check with the pharmacist about interactions but 
if there are none...still give him the Trazodone at night for the disordered 
sleep...and see if we can get away with one low dose in the morning of the 
Clonidine. I REALLY need some input here guys...as I write this I'm waffling 
back and forth (complete with quivering chin trying to hold back 
tears)...scared to death of it and saddened that we feel we need help anyway. 
It feels like failure as a parent...
Thanks in advance...
Love, 
Penny...loving & devoted wife to Joe, the best husband in the world...mom to 
Nick (15 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, Pooh, Elmo, & food in general. 
Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper the Wonder 
Dog...our 9 ? 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.htm      
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/
"We love the things we love for what they are" 
Robert Frost
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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