side effects of clonodine

[bev]

Hi all,

 

My son (11) has tics which appear to be worsening. He only started them properly in August last year. This coincided with him starting secondary school and starting on an insulin pump for diabetes. The doc has suggest using clonodine if it gets worse - but i am unsure of the effects of this drug? Is it safe? How drowsy does a child become whilst taking it? He needs to be fairly 'with it' in case he suffers a 'hypo' and needs to treat himself with glucose etc - so i need to know just how 'sleepy' this drug makes your children? The doc said he would prefer him to have this drug than any of the others as it has less side effects. Is this true? I have started giving him some bach's potion - but havent seen any difference yet.

 

Also, can i ask what levels determine mild, medium severe etc? (TS). My son has throat clearing, makes a tiny noise in the back of his throat, pulls his tummy in. and blows in a funny way. He also stretches his neck forward and ocassionally does a face grimace. He mostly does these seperately, but i have noted that on ocassion lately he does 2 or 3 of them together or in sequence. Would you say this is severe?

 

Also, the doc said that as he is waking 3 times a night having hypo's this wont help with the tics - is this correct?

 

I give him magnesium 500mg a day and omega 3 daily. I have not noticed that these make any difference - but he has only been taking them for 3 weeks - how long does it normally take to notice a change?

 

Diabetics are often coeliacs - he is having a test done at next clinic in march. Do you think its possible that this is linked to tics at all?

 

1 year before he was diagnosed with diabetes he had a huge absess on his genital area and required an operation on it. Do you know of any link that may cause tics and this condition?

 

 

Are the clonodine patches better than taking the pill?

 

Sorry for so many questions - my head is spinning at the moment - i am just so grateful that you lovely people are all here to advise (although of course i wish your children didnt have this).

 

Thankyou. Bev x

[rysmom58]

clonidine is extremely sedating. My son takes the majority of his dose at night and he is asleep within an hour of taking it. After about 5 mos. on it I broke up his dose and he takes 1/4 of a pill about an hour before school (and he's fine) and the rest of his dose at night. I know that when my son takes his 2 pills at night, he is out and does not wake up for much of anything. This is the only side effect we have experienced. He is not sleepy at all with his 1/4 pill in the morning, but he's been on clonidine for a year and its used to it. as for his tics, he hasn't had any for at least 7 mos.

[faith]

hi bev,

I can't say much about the clonodine because I have not tried that with my child, but I do know it is quite possible for them to become sleepy on it. I think some hve found starting at a very low dose and giving it at night might alleviate that symptom or at least get it to work in your favor. you may have to experiment somewhat to find which dose and what times to give it. again, I don't have experience so that's all I can say.

Edit: I see rysmom has replied, so she gave you her experience of the dosing and timing....

 

don't know about the patch, but CP on here has tried that in the past, so maybe she'll give something about that.

 

Your son does not sound severe, no. those symptoms are mild, however, I know that when one tic vamps up a little, it may seem that way to us. I believe tho, that we as mothers, probably see way more than others see and pay attention to. they are not looking at your child for long times at a stretch, so many things may go undetected as an actual tic or repetitive behavior.

 

What is 'hypo', ?..do you mean he wakes up and hyperventilates at night, as from anxiety?

 

don't know anything about celiac and diabetes, (but I know someone who might, lol.. )

 

One other thing,...when you say the tics have gotten worse lately, do you mean in the past few weeks, or just tthis time of life in general? I see you are using omega 3? some of us here feel fish oil seems to cause an increase in tics, for what reason, don't think we know. By all accounts, it is a good supplement and should provide benefits, however most probably stop using it if it seemed to cause an increase. It may be an initial worsening before getting better, don't really know, so you'll have to weigh how you feel about that. Do you feel the tics started to worsen after you began the omega 3? if so, this supplement may be the culprit.

 

Sorry, don't recall if I asked this before, but since you say he is 11, has he had the vaccines that are given at this age? Tdap, varicella, flu shot? if so, how long ago? this can be another factor that may cause increase. basically, anything that compromises the immune system.

 

hope that helps.

Faith

[michele]

I gave my son clonidine for a few months. He was 7 and weighed about 55 lbs. He took .01 mg cut in half twice a day with 15 mg of Abilify. In the beginning he fell asleep so fast it was scary. I mean where ever he was he just layed down for a nap, a the pool, car etc. I looked into the patch but was told it could not be cut in half(don't know if the psychiatrist was right, since she had never used it) We then stopped it and added tenex and prozac and switched to risperdal. He still goes right to sleep at night but is not as tired during the day. We took it over the summer and I couldn't imagine him sitting through school without falling asleep. I would worry about it with the diabetes that he may be to out of it and not know his suger was off. My son has tics and takes the tenex. Your son's tics sound minor like my son's and are more noticeable to us because we watch for them. Maybe he doesn't need meds for them at all unless they are bothering him or interfering in his life. My son was butt picking and sniffing, licking and eye rolling and making noises, cracking fingers and toes. They change over time and are never more then a couple at a time. They are better now on tenex though. Good luck to you.

Hi all,

 

My son (11) has tics which appear to be worsening. He only started them properly in August last year. This coincided with him starting secondary school and starting on an insulin pump for diabetes. The doc has suggest using clonodine if it gets worse - but i am unsure of the effects of this drug? Is it safe? How drowsy does a child become whilst taking it? He needs to be fairly 'with it' in case he suffers a 'hypo' and needs to treat himself with glucose etc - so i need to know just how 'sleepy' this drug makes your children? The doc said he would prefer him to have this drug than any of the others as it has less side effects. Is this true? I have started giving him some bach's potion - but havent seen any difference yet

 

Also, can i ask what levels determine mild, medium severe etc? (TS). My son has throat clearing, makes a tiny noise in the back of his throat, pulls his tummy in. and blows in a funny way. He also stretches his neck forward and ocassionally does a face grimace. He mostly does these seperately, but i have noted that on ocassion lately he does 2 or 3 of them together or in sequence. Would you say this is severe?

 

Also, the doc said that as he is waking 3 times a night having hypo's this wont help with the tics - is this correct?

 

I give him magnesium 500mg a day and omega 3 daily. I have not noticed that these make any difference - but he has only been taking them for 3 weeks - how long does it normally take to notice a change?

 

Diabetics are often coeliacs - he is having a test done at next clinic in march. Do you think its possible that this is linked to tics at all?

 

1 year before he was diagnosed with diabetes he had a huge absess on his genital area and required an operation on it. Do you know of any link that may cause tics and this condition?

 

 

Are the clonodine patches better than taking the pill?

 

Sorry for so many questions - my head is spinning at the moment - i am just so grateful that you lovely people are all here to advise (although of course i wish your children didnt have this).

 

Thankyou. Bev x

[laurena82]

Also, the doc said that as he is waking 3 times a night having hypo's this wont help with the tics - is this correct?

Bev,

I am a CDE (certified diabetes educator)....and, from reading your post...I would be more concerned re: getting the BS under control right now than the tics.

 

My son was on clonidine when he was younger, and yes, it made him drowsy, so, like the others, I gave him it at bedtime and it helped him get to sleep. If your son is having low BS during the night, I would be hesitant on doing a similar (night time only) clonidine regime with him.

 

Are you able to get a CGM (continuous glucose monitor) system for your son? That would help relieve anxiety re: night time lows. Also, as you know, the basal rate can be changed .....so working with your MD or CDE to get basal that's not causing lows would be my first priority.

 

If you do try clonidine, I'd consider starting with just am dose, so you saw level of drowsiness....then move to twice a day with half dose am and pm, so you kind of know how sleepy it is making him.

 

However, regarding:..

 

Also, can i ask what levels determine mild, medium severe etc? (TS). My son has throat clearing, makes a tiny noise in the back of his throat, pulls his tummy in. and blows in a funny way. He also stretches his neck forward and ocassionally does a face grimace. He mostly does these seperately, but i have noted that on ocassion lately he does 2 or 3 of them together or in sequence. Would you say this is severe?

 

 

....there is no real medical reason to start the clonidine, especially if he isnt bothered by the tics.

 

so......if he isnt bothered by the tics....you dont need to do anything.......

 

 

However, if/when you do try a med, I would agree with your MD re:

The doc said he would prefer him to have this drug than any of the others as it has less side effects. Is this true?

 

((((((hugs))))) and Best Wishes!!

[bev]

Also, the doc said that as he is waking 3 times a night having hypo's this wont help with the tics - is this correct?

Bev,

I am a CDE (certified diabetes educator)....and, from reading your post...I would be more concerned re: getting the BS under control right now than the tics.

 

My son was on clonidine when he was younger, and yes, it made him drowsy, so, like the others, I gave him it at bedtime and it helped him get to sleep. If your son is having low BS during the night, I would be hesitant on doing a similar (night time only) clonidine regime with him.

 

Are you able to get a CGM (continuous glucose monitor) system for your son? That would help relieve anxiety re: night time lows. Also, as you know, the basal rate can be changed .....so working with your MD or CDE to get basal that's not causing lows would be my first priority.

 

If you do try clonidine, I'd consider starting with just am dose, so you saw level of drowsiness....then move to twice a day with half dose am and pm, so you kind of know how sleepy it is making him.

 

However, regarding:..

 

Also, can i ask what levels determine mild, medium severe etc? (TS). My son has throat clearing, makes a tiny noise in the back of his throat, pulls his tummy in. and blows in a funny way. He also stretches his neck forward and ocassionally does a face grimace. He mostly does these seperately, but i have noted that on ocassion lately he does 2 or 3 of them together or in sequence. Would you say this is severe?

....there is no real medical reason to start the clonidine, especially if he isnt bothered by the tics.

 

so......if he isnt bothered by the tics....you dont need to do anything.......

 

 

However, if/when you do try a med, I would agree with your MD re:

The doc said he would prefer him to have this drug than any of the others as it has less side effects. Is this true?

 

((((((hugs))))) and Best Wishes!!

 

Wow - thankyou all! Laurena, what a coincidence that your an expert on diabetes! My son is on the medtronic pump with sensors - so we do use the alarms at night - but the problem is that sometimes there is quite a big difference between what the pump says and the 'real time' blood check! So we do random checks through the night and we have found him hypo - well the lowest was 2.1 so not too bad - but if we hadnt checked then he would have gone lower i think.

 

We are very new to pumping and diabetes - only been one year and pumping for 4 months - so still learning! Last night i adjusted his basals and he stayed on 5mmols through the night which was great - so i dint wake him or test him and he looks very refreshed today. (sorry i dont know how to convert the mmols to your system?)

 

I do think he has reacted since taking the omega 3 and think i may take him off it. He isnt bothered really about his tics - other than when he knows i have noticed and this can upset him. I need to learn to not look at him when he is doing it.

 

I am thinking that if he goes on meds now it will stop him getting any worse - but is there any truth in this or can it make matters worse?

 

Hypo - means a low blood glucose level - under 4mmols and if left untreated can cause a siezure or fit or even coma.

 

Thankyou for all your advice - i am worried that this may make him too drowsy - but if the doc is ok with it i might start him on a quarter tab and see what happens - i can always take him off it.

 

He had his flu jabs in November - this was after the tics started showing really. In fact , things started to get worse once he was on the pump - i wonder if there is any relationship with this and tics? Thanks all. Bev x

[Chemar]

Hi Bev

great that Laurena can give you input from the perspective of diabetes as I would think that truly is far more important to have under correct control

 

My husband and son have TS and tho my son has never had clonidine, my husband did with rather alarming side effects. The doctor gave it to him for the dual purpose of helping his tics, which had waxed after many years of being very minor, as well as to bring down his high blood pressure(which is the main use of clonidine medically)

 

my husband became totally psychotic while on the clonidine and it was very scary. Thankfully those symptoms went away as soon as he came off it.

 

I wonder if there is cause for concern about the impact of its blood pressure lowering and heavy sedative effect given the fact that you son has diabetes to deal with too

[kim]

laurena,

 

I'm wondering if you have any knowledge of type one appearing after, or along side a strep infection? If yes, is it commonly known to appear after other infections or illness too?

[laurena82]

laurena,

 

I'm wondering if you have any knowledge of type one appearing after, or along side a strep infection? If yes, is it commonly known to appear after other infections or illness too?

 

Kim,

I live in a real rural area, and work primarily with adult type 2's, ....so I'm not really up on type 1 things. I do know they definitely have been suspecting such a thing, and I think beginning to substantiate it.....but, again...I dont follow the research. I know epidemiological studies find certain areas where higher incidence of type 1 during certain time periods, which supports some sort of communicable disease that folks in that area got, then those susceptible progressed to type 1. And, since type 1 is immune system related, it seems reasonable that responses to other diseases could be related....

 

But, again...I really dont follow that and know....

 

I believe JDRF is the acroynm for Juvenile Diabetes Reseach Foundation, and you could google them up and probably look around there and find info/links to current research findings.

 

Sorry I'm not of more help ...!

[PKM]

My son was diagnosed with Sydenham's Chorea about 1 year ago (had a sudden onset of severe chorea and tics post strep infection). He is still having some issues. In the fall the neurologist wanted to try him on clonidine to see if it would help him with the movements. His movements became worse on it and he had trouble communicating verbally while on it (the movements were so bad that they kept interfering with his flow of speech). Moreover, he had a lot of trouble sleeping while he was on it (trouble falling asleep and trouble staying asleep). I do believe that it is rare for a child to respond to clonidine in this way (usually they have an easier time falling asleep and I don't think it generally makes movement issues worse!). We also found that my son responded in a very similar way to magnesium (Kid's Calm) - it just seemed to make his movements a little worse and it kept him awake at night. Maybe this is because the etiology for TS and post-strep issues is different??? I really don't know but whatever we try that often works for kids with TS only seems to backfire and do the opposite for him.

 

This was our experience with clonidine. That being said I wouldn't be afraid to try it because some kids do very well on it (and if your child doesn't do well on it you can always take him off - just make sure you taper him off slowly otherwise you can really mess with his blood pressure).

[laurena82]

Hi Bev,

 

I am thinking that if he goes on meds now it will stop him getting any worse - but is there any truth in this or can it make matters worse?

 

Something like clonidine (catapres) wont do anything towards "curing" the tics....it's basically suppressing them for a day or so while the med is working (kind of like a pain pill is removing the sensation of pain for a few hours, but not actually doing anything to treat the underlying cause of the pain).

 

So, there's no guilt to not giving the med, ...it is just to relieve the discomfort (physical or psychological) of the constant ticcing. Lots of folks on here have found "alternative" ways to reduce the tics....admittedly, it is very time consuming trying to figure out the correlation between foods/supplements/other environmental things and the manifestations of the tics.......because, as you're aware, ....there is such a waxing and waning quality to them....one goes away, and you think ...."wow!GREAT!...."....but then....sigh....a DIFFERENT one starts......and you're bummed again.

 

If you do wind up trying catapres, I'd definitely give it first thing in the am, and start it on days he's home with you and you can see how much drowsiness it causes. Also, I think it's something that when he's on it for a couple of weeks, you'll see a bit less drowsiness then when he's first on it......so, you might give it a bit of time. As I recall, at age 11 (and my son was a featherweight), he could be taking 1 of the 0.1 mg pills at bedtime, and 1/2 of one in the am without being too drowsy. (usually he was OK on only 1 tablet a day, and since he had trouble getting to sleep anyhow, I always opted to give that at bedtime.....but in your case, I'd be inclined to do morning dosing .....)

 

((hugs)) and BEST WISHES!!

[faith]

could anyone say how long it takes for the clonodine to go to work? a day or two? or is this something that has to kick in after about 3 weeks or so? just wondering.

 

thanks

Faith

[trggirl]

I would just add to what Faith said, Omega's of any kind make my daughter tic. I put her on fish oil and she went from mild tics to very noticable tics. I finally figured it out and quit the fish oil, but I have noticed I can't buy anything at all with Omega's added. I have accidently bought eggs, cookies, and a few other items with the added omegas in fine print and she reacted. I really have to be careful because they put it in everything these days.

 

It is quite possible that if you get rid of the omegas, you won't even have to consider clonidine.

[trggirl]

Onset of action is quick Faith.

[Chemar]

Trg girl

have you tried her on flaxseed oil for omega 3?

 

my son reacts with more tics to all other forms, especially fishoil, but responds very well to flaxseed oil