family mum

New Member
Hi,
I've been off the site for a little over a week now. partly because I just could not get it to respond, it just wouldn't load properly ( anyone else experience this?). Secondly, We have had a crazy difficult time, which included my daughter and I fleeing house last Wed. heading to office of social worker and another urgent care social worker coming to our house for several hours that same night. Things pretty much continued like that adll week. My oldest pretty much stayed away from the house all weekend( thank G-d for amazing friends) and I shipped my daughter off for an overnight play date to try to get her some R&R and give some space to everyone. On Monday husband and i had an appointment with difficult children psychiatric. but we had to cut it short when my daughter texted and called in panic. Anyways husband flew home immediately and I followed shortly. I got home to multiple police cars in my driveway, followed by an ambulance drive to hospital, and overnight stay in the emerg. observation room, and being sent home following noon with new prescription of clonidine, to be given, for this week anyways, in addition to the Risperidone. Our case social worker, who had been on vacation for 2 weeks came by Mon. evening for 2 and a half hours. We have a big meeting planned for next Tues. with all the various players to see what we can do to get this situation under control.

Any ways, enough of my sad tale,i could go on forever describing what's been happening and how many appointments we have had and will have in the week to come...
My question is what experience has anyone had with clonidine? difficult child has to take it every 4 hours so he has to take it himself during school day.
 

JJJ

Active Member
I'm so sorry that you are dealing with all this. Clonodine helps take the edge off my sons hyperactivity.

The school nurse should control his medications while he is at school. In most schools he could get suspended for having the medications on his person.
 

buddy

New Member
Usually they can't give themselves medications except after a certain age they can sometimes, with signed permission take a tylenol or advil type of medication (our district does that). No way he would be allowed to give himself clonidine, imagine if he dropped one and another kid took it? Or if he had a blood pressure issue and the school didn't know???

Anyway, my son has been on clonidine for a long time. If it works for him and want a more even administration of it, we use patches (changed weekly).

Even before I adopted Q, this was the medication they were using with him as a toddler (very very small dose). We didn't need it for a long time then started it again in fifth grade. As hard as things can get around here, without that medication...he can't be not aggressive. It is the one that has helped the most with that issue.

Of course everyone has different experiences and like with any medication you will hear some kids have issues and some don't.

Anyway, I am so sorry there was so much drama. We had a police/ambulance ride last Sun too and I am still recovering....just really a lot to go through --- wanting them to be in a better place so desperately.

I hope the medication helps at least for now until you figure out what to do next.
 

Tiapet

Old Hand
Clonidine every 4 hours? I didn't know it could be given so much (though I don't know the dosage). My 3 difficult children have all been on it, 2 still on it. I was told the highest dosage could only be .4 mg (hope I have that right). Maybe I'm wrong, and I'd love to learn more on this if so, but seems off that it can be done every hours.
 

buddy

New Member
Q takes .1 tabs three times per day PLUS wears TWO TTS 3 patches (which is the equivalent of .6 mg steady state as I understand it). Now that said, he does have a drug processing problem (liver enzyme deficiency) and it affects how he processes medications so sometimes he needs higher doses and other times he needs minute doses or can't tolerate a medication at all. He has never had any blood pressure drops or anything. One time the nurse misunderstood and gave him three tabs and so frantically had to monitor BiPolar (BP) all day every 15 minutes and it did nothing to him, his body seems to have acclimated to it.

We have been warned to not stop it suddenly of course, that can cause a blood pressure spike.
 

keista

New Member
((((HUGS)))) I don't have personal experience with Clonodine.

Is this behavior escalating? How long has he been on the Risperidone?
 

family mum

New Member
Clonidine prescription is for 1 tablet (.025mg) 4 times a day every 4 hours during the day for the first 3 days then doubles to 2 tablets 4 times a day every 4 hours during the day. He has been on the Risperidone only since Dec 22 and on current dose of 1.5 mg daily only since beginning of March. Yes, the behaviour has definitely been escalating. yesterday was the first day on Clonidine as so far so good. We actually had a day without a meltdown and almost no unwanted behaviour at all. (I have completely dropped homework from the agenda, I'll ask him if he has any to do but I don't push if he says no or that he left it at school etc., )

I just brought my oldest for a blood test and he mentioned that he thinks the new medication. is already making a difference in difficult child.. Jo's usually pretty intuitive about these things, so hear's hoping that he is right!
 

keista

New Member
He has been on the Risperidone only since Dec 22 and on current dose of 1.5 mg daily only since beginning of March. Yes, the behaviour has definitely been escalating.
So maybe it's the Risperidone? Has anything gotten better since he's been on it? I'm not a fan of medicating the side effects of medication. I know that some times it's necessary and required.
 

Malika

Well-Known Member
I don't wish to scare-monger but the French forum for parents of ADHD kids I belong to has recently had a lot of material about the horrendous potential side effects of Risperdone, one of which is causing aggression and violent behaviour, that have (it is claimed) been repeatedly hushed up by the manufacturers. I offer this for whatever it is worth and obviously without any direct knowledge of the truth or otherwise of this.
 

helpangel

Active Member
Yes when come home to drive full of police cars its usually a sign to make sure have coffee creamer & a good book in your purse because its gonna be a long night. (french vanilla makes even vending machine coffee drinkable.)

We didn't have much success with Clonidine but as others mentioned it shouldn't be discontinued quickly. It would concern me if they wanted to increase either one of his medications - wondering if a 3rd might be needed.

Looking at your signature - ends with "currently no anti seizure medications" do you suspect maybe he needs anti seizure medications?

All of your posts that I've read I always looked at medications and wondered why no mood stabilizer? It turns out many 1st line mood stabilizers are anti-seizure medications.

Just throwing it out there hope you can find some stability in your life soon.
 

family mum

New Member
He was on Lamictal up until Sept. which is, as you mentioned, a mood stabilizer as well as an anti seizure medication. While the behaviours have been getting worse, they did start escalating even before the Lamictal was weaned.

He came home from school today as happy as a clam and headed right back out with his friend to buy supplies for their scout camping trip. They had even made it to the store before he realized that he had forgotten his money on the table, they came back, picked it ip and left again all without so much as a peep of complaint. if this is the effect of the Clonidine then I'm all for it.
 
B

BeachPeace

Guest
my son is on a long acting version of clonidine called Kapvay - it has been a great addition to his medications and seems to take the edge off of the rages
 

Wiped Out

Well-Known Member
Staff member
My son has been on Clonidine for years. First he took it for sleep and later to help with his hyperactivity. I remember one time he was in the psychiatric hospital and they wanted to start him on a new medication that would involve him going off the clonidine. After hours off the clonidine he was so hyper they ditched that idea.
 

buddy

New Member
So maybe it's the Risperidone? Has anything gotten better since he's been on it? I'm not a fan of medicating the side effects of medication. I know that some times it's necessary and required.

I know kids this has been a miracle medication for. For Q.... it sent him off the deep end. I was working at the child development clinic where he was attending daily 4 hour intensive autism early childhood classes....they called me and here were four adults restraining my teeny tiny little boy and he could have taken them all out! He was just in the worst state I had ever seen to that point. doctor took him off and it was gone the next day. Then in grade 4? approx.... he tried Seroquel... same thing happened and he nearly ran my car off the road. I couldn't even get out of my car because he was pulling my seat belt so hard I was stuck. Took hours to calm. Then doctor took him off and two days later he was back to his usual upsets, nothing like that level.

Now in that same class I was desperate so let them try Zyprexa and thank you God, it is helping quite a bit. I am still dealing with rages but he is overall doing much much better. When he is in a good place he is in a very very good place. He just finished his whole state testing (he does the special needs version) in three days! Last year it took weeks.

Anyway, just saying... I know others have had issues with Risperdal/Risperadone (sp?) too but of course for lots of kids it is amazing.
 
My son was on risperdal for a week and I took him off. Didn't stop the ticks but made him so mean. Awful. Took him off and it went away instantly (24 hours). doctor said rage isn't a side effect but it was for my kid.
:smile:
 

BusynMember

Well-Known Member
Count me in on one who is not thrilled with what Risperdal did to my kid. Not only did he have tons of physical symptoms and the beginnings of ticks, which can be tardive dystonia, but he was so depressed that all he did was cry and sleep, which was NOT like him. I have no idea how Risperdal is for other kids, but I'd never try it on mine again.
 

IT1967

Member
I'm going to say that I'm thrilled that we are starting to wean difficult child 2 off of Risperdal. We're down to .75 from originally being at 1.5 and already the nighttime peeing has stopped. I'm praying I'm not jinxing myself, but I'm seeing no bad mood changes with-the decreased dose. *please let it stay this way!!* Now, if I could only start tapering my difficult child 1 off of it too..... hopefully soon. I hate that medicine. It scares me to death.
 
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