[tri-med] Re: Need Input on Clonidine

In a message dated 7/27/06 4:46:06 PM, plugginalongpv@xxxxxxxxxxxxx writes:


> 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,
> 

I am the clonidine expert. When my now 25 year old son had it subscribed for 
him, I was really nervous. After he had been on it for a week, I happened to 
run into our pharmacist in a restaurant and we talked about it as a medication 
for kids. This was over 15 years ago. He told me that as a medication, it had 
been in use for many years and was one of the safest with the least side 
effects that he had seen prescribed for anyone. The trick was to start on a 
very 
low dose and titrate up very slowly. Is Devon starting with the pills? They can 
and as far as I am concerned, should be quartered to start. Chris started on 
1/4 of the Catapress patch and it worked really well. Starting in January over 
the next two months we went up a fourth of a patch each week until he was 
wearing a whole patch that was supposed to last for a week. It did not and we 
started changing them every five days or so, but he had a skin reaction to the 
adhesive so we switched over to the pills. If I remember correctly, we started 
on 
a half pill, three times a day and we worked up to a whole pill three times a 
day in a couple of weeks. Ali has been taking clonidine since she was about 
eight and the one time we took her off, it just seemed as if her other meds did 
not work as well, so we put her back on. For her we started with the pills 
because she was not one to leave adhesive patches alone anyway. LOL Try to 
imagine. She started with 1/4 pill morning and night and then we added 1/4 at 
noon 
and eventually started giving her 1/4 a pill five times a day (every three 
hours) when she was getting other meds anyway. After a few weeks, that worked 
up 
to a half pill five times a day and eventually a whole pill five times a day. 
She has continued on that since she was about 10. The trick was to titrate up 
very slowly to make sure it did not make her tired, but helped keep the tics 
down and it has a calming effect.....along with the moban and wellbutrin. Many 
folks start with too high a dose and the kids get zombie tired so they give up 
on the med. Chris elected to stop taking it when he was about 20-21, but has 
gone back on it a couple of times since mostly at night if he had trouble 
sleeping. I think he should be taking it morning and night, but since he is 
married and has a child of his own, he does not listened to his mother anymore. 
But 
I did tell his wife.....When Chris had been on the medication for about two 
months, I asked him what he thought it did. There had been such a change that 
his older sister asked where her "real" brother had gone and who was this 
stranger in his skin. LOL Anyway, he was still on the patch and he told me that 
he 
thought the medicine went from the patch, through his skin and straight to his 
brain and helped him think better. Both of the kids, after they had been 
taking it for some time, missed doses occasionally and it had no adverse 
effects, 
but they did have a built up blood level, so probably had some cushioning. I 
love what clonidine has done for my kids, but my advice would be, start low and 
go up slow. Dom did try it for awhile, but it never worked for him like it did 
for Ali and Chris. Our doc said it worked on the ADHD/TS stuff about 60% of 
the time, so I guess my kids sorta prove the stats.



Nan
mom to:
Dom, 9/16/83, Tri 18 mosaic and Bipolar Disorder.
Ali, 6/12/83, Autism, Tourette Syndrome, ADHD


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

Other related posts: