[tri-med] Re: Need Input on Clonidine

----- Original Message ----- 
From: "plugginalongpv"
>> 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???

Penny,
Alex has been taking Clonidine for years but NOT for the reasons you are 
considering it. We have seen the good and bad sides of Clonidine though.

Clonidine is also known as Catapress. Its a Beta blocker - so yes it's 
original design will always be as a blood pressure lowering drug. Its just 
that as a medication its one of those drugs thats often used for its side 
effects rather than its main purpose. (eg Tylenol, is a pain reliever BUT a 
side effect is that it lowers temperature as well). In fact these days there 
are much better blood pressure drugs so Clonidine is not used very often for 
lowering blood pressure, its used more often for behaviour, especially 
hyperactive type behaviour, sleep and obsessive compulsive issues.

Don't let the blood pressure side of the drug deter you too much, treat it 
as a side effect that needs to be watched. The plus side of things is that 
low blood pressure is far less dangerous than high blood pressure. Another 
thing that may be of interest with regard to the blood pressure side is that 
although Clonidine is known as a blood pressure lowering drug, with Alex, it 
actually INCREASES his blood pressure, or has no effect - it doesn't lower 
it. Just one of those unique things about our kids.

Alex does however not take Clonidine regularly. He did, long ago but the 
side effects of slowing him down outweighed the benefit for which he was 
taking it, which was reducing the number and severity of his Shapiro's 
crisis (as a beta blocker its also a GABBA inhibitor and its GABBA that Alex 
produces too much of). So these days we use it as a stat (immediate) 
medication only as needed to reduce his GABBA output after the fact.

However remembering back to the days of using it regularly. Alex was about 4 
I guess and started on a doseage of 1 milligram a day in divided doses (he 
now has 1mg as a stat dose simple because he is bigger). A much smaller dose 
in the morning than at night because of the sedating effect. It is often 
used only at night for sleep.

We had to fiddle with it for a while to work out the right doseages for Alex 
but we did wean him up to what the neurologist wanted, 1 milligram a day. 
Here in Australia we cannot get the Clonidine patches. They are not illegal, 
they just don't distribute them here. I heard about the clonidine patches 
and thought, as did his doctors, that the more even doseage would be much 
more benificial for Alex and the reason that we were using it. So we ordered 
the Clonidine patches from New Zealand. My BIG mistake.

Just because a child can tolerate a doseage orally do NOT automatically 
assume that changing the route of giving the drug will mean the same thing. 
Alex's metabolism is such that he absorbed much more of the Clonidine 
through the patch than he did orally AND because he is unique he absorbed 
the entire 1 milligram in a few hours instead of over 24 hours like he 
should have. So within 3 hours of placing the patch on Alex he was 
unconscious and fighting for his life. Its a rare occurence BUT if its rare 
I know I can expect Alex to do it :-))

That experience also taught me that Clonidine has no antidote and it has a 
VERY long half life, 36 hours to be exact. That means that it takes your 
body 36 hours to metabolise (get rid of) half of the drug you have ingested. 
So all we could do for Alex that time was wait for his body to get rid of 
the drug naturally. I say all of that not to scare you but because it means 
that missing a single dose should NOT make a huge problem with blood 
pressure. In fact because it lowers your blood pressure slightly missing a 
dose will only bring it back to "normal" and because our kids aren't taking 
it for blood pressure normal is fine. It doesn't have a rebound effect of 
increasing your blood pressure above normal. And because it has such a long 
half life it stays in your system a long time.

Another way that you can judge that is the way so many people take it. Some 
take it as a single dose at night, some take it in two, three or four doses 
through the day and some take it via a patch for even distribution over 24 
hours. I think that shows you that missing a single dose is not a huge 
issue.........

As Nan said, you take it in VERY small incrememnts until you get to the 
doseage thats right for Devon. If you start with the tablets and then switch 
to the patches, titrate the patches up again just like you do the tablets.

I am considering putting Alex back on a regular doseage for his obsessive 
compulsive issues, but being me I am trying to put that day off as long as 
we can. Plus at the moment Alex is going through a very rough patch with his 
Shapiro's crisis and all sorts of other nasties are happening that we can't 
explain (eg he is back to needing 14 hours sleep a day, his appetite is gone 
again, he is have more hypoglycemic issues etc) and we arent really sure 
why. We see the endo next week so maybe they can shed some light on the 
subject. But in the meantime I wont add a new something until he is stable 
in other ways. However Clonidine will be our first choice to trial for the 
obsessive behaviours (lip and finger picking and now the annoying trait of 
sitting and double jointing his fingers (he laces his fingers and bends them 
into all sorts of weird positions).

But we still go with the Clonidine during a Shapiros crisis. He can now 
easily have 1mg in a dose and can actually have up to 2mg within a few 
hours. In hospital they will give him more, but if he has more we like to 
keep an eye on his blood pressure just in case. And thats way more than you 
would be considering giving Devon. In my not so humble opinion I think its 
probably worth a try, just work with your doctor and go slow with doseage. 
Don't panic about missing a dose either, its unlikely to mess with his blood 
pressure too much and if it does its only going to bring it back to normal. 
In fact I would hazard that you would be reminded that he had missed a dose 
from his behaviour and your blood pressure before it did anything nasty to 
HIS blood pressure. :-))))

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (11 years, T-18 Mosaic)
http://members.optushome.com.au/karens

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

Other related posts: