update on son and clonidine

[rysmom58]

Hi,

I've gotten a few pm's about how my son has been doing so I thought I would update you all...

Ryan started clonidine in Jan. and has been on it since then. His tics have been under control unnoticeable most of the time since starting the clonidine. I have had to change the dose since starting and also the times he gets it so that it works best for him.

Now he gets 1/4 tablet in the morning and 2 at night. This seems to be the magic formula for him. He is happy, not ticcing, and not tired with the 1/4 pill in the morning (I tried a 1/2 and he was emotional and exhausted). With this I don't notice any ticcing during the day, maybe a few here and there in the evening.

It took us a while to get here though. Towards May (after he'd been on clonidine for 2 mos) the ticcing seemed to come back. I waited until the summer to spread out the dose b/c it does make him very tired. It did take him about 2 weeks after starting the morning dose for his body to get used to it and not be tired or emotional. Now, he's great! I'm sure I'll notice some tics when school starts, this always brings them out. Just thought I'd give an update on our experiences with the clonidine.

[mommyof2]

Hi

Is your son still doing well....does school soon start for you? Ours is in 2 weeks and our son is doing well, just wish I could get his hmmm noise to stop. It has been going all summer now. We tried L cartine and Acelyt L cartine...one for about 10 days, nothing stoped so the other for 10 days nothing stopped so stopped them both recently. Hoping to soon figure it out....was hoping it would stop in time for school...hoping he can keep it under control when in school. He knows how to change it by going through his nose and not being so obvious but just doesn't do it very often guess it is more satisfying than to force it to do something else...

Mary

 

 

Hi,

I've gotten a few pm's about how my son has been doing so I thought I would update you all...

Ryan started clonidine in Jan. and has been on it since then. His tics have been under control unnoticeable most of the time since starting the clonidine. I have had to change the dose since starting and also the times he gets it so that it works best for him.

Now he gets 1/4 tablet in the morning and 2 at night. This seems to be the magic formula for him. He is happy, not ticcing, and not tired with the 1/4 pill in the morning (I tried a 1/2 and he was emotional and exhausted). With this I don't notice any ticcing during the day, maybe a few here and there in the evening.

It took us a while to get here though. Towards May (after he'd been on clonidine for 2 mos) the ticcing seemed to come back. I waited until the summer to spread out the dose b/c it does make him very tired. It did take him about 2 weeks after starting the morning dose for his body to get used to it and not be tired or emotional. Now, he's great! I'm sure I'll notice some tics when school starts, this always brings them out. Just thought I'd give an update on our experiences with the clonidine.

[rysmom58]

He is doing very well. School starts here it two weeks too, but I really haven't mentioned it to him. He gets very anxious so I'll let him know a few days before it starts. No reason to get him nervous now. usually at the beginning of the school year (for about the first 2 weeks) his tics get very active. This is the first back to school while he is on clonidine, so we'll see how it goes.

As for Claritin, my son can't handle it, it makes his tics come out. We have been using Zyrtec for allergies with a much better result.

[guy123]

When you say "and 2 at night" do you mean 2 full tablets?!!! Or 2 quarter tablets (so 1/2)?

[rysmom58]

When you say "and 2 at night" do you mean 2 full tablets?!!! Or 2 quarter tablets (so 1/2)?

 

 

Ryan (who's 7 ;65 or so pounds) takes 1/4 a tablet around 7:15 a.m. and 2 and 1/4 tablets at 7:15 p.m. He also takes Kids Calm at night (1tsp) along with a flinstone's vitamin and a gummyvites echinachia/ vitamin c.

When I say he's been tic freee since August, he's been almost totally tic free. It's actually improved even more since I last posted. It is very rare that I notice him ticcing at all. I was worried that his tics would get a bit crazy with school starting (they have for the past 2 years), but nothing. I am almost scared to type this b/c I don't want to jinx this.

It did take him a while to adjust to taking the morning pill. He was tired and a bit moody. I've found that if I give it to him at 7:15 am and 7:15 pm, its enough time between doses where he's not tired in the morning. Also, it seems to be staying in his system. He is really tired about an hour after his p.m. dose, but that's b/c it's the majority of the medicine and he's been active all day long.

[guy123]

so he takes 2.5 total per day? wow, that's a lot!! what's his resting blood pressure?

 

im glad you've found something that works for you

[rysmom58]

so he takes 2.5 total per day? wow, that's a lot!! what's his resting blood pressure?

 

im glad you've found something that works for you

 

I don't know his blood pressur off the top of my head, but the last time he was at the ped. it was fine. As for it being " a lot" it's what his nuero at Boston Children's hospital perscribed and we worked up to it. He's been doing more than great. The next time we go to a cvs I'll check his blood pressure and post it here. Sorry I can't give you more specifics.

[PKM]

I'm just wondering how many milligrams each pill is?? (I'm pretty sure that Clonidine pills are sold in different sizes in Canada than they are in the USA. Each pill in Canada is only .025mg) I'm curious because my son just recently started taking Clonidine .05mg in the am and .05mg in the pm. He hasn't been diagnosed with Tourette's at this time but has been diagnosed with Sydenham's Chorea / possible PANDAS. When he first started taking the Clonidine he had a severe increase in movements and insomnia. Now......about 2 weeks later things seemed to have settled down a little. What were things like for your son when he first started with Clonidine?

 

PKM

 

 

so he takes 2.5 total per day? wow, that's a lot!! what's his resting blood pressure?

 

im glad you've found something that works for you

[rysmom58]

Hi,

Each tablet is 0.1 mg. He has been on it since last Jan. and it took me a while to figure out the doses/ times etc.. He would do great for a month or two and that his tics would come back (not as much before the pills). It was a process. I also waited to give him the 1/2 tablet in the morning until the summer b/c I was worried about his being tired in school. It did take him a couple of weeks for his body to adjust to this. Ryan was very emotional at first and a bit spacey about an hour after taking the pill. However, he now does not experience that at all. I hope things work out for you. My experience is that you need to give it time so that your child can adjust and if it's not working I would talke to the neuro. GOOD LUCK.

[PKM]

Thanks for sharing your experience. I find it odd that my son would experience insomnia and an increase in movements with the clonidine - but then we also had the same result with magnesium (Kid's Calm). It seems that these things that are supposed to be calming the brain (and even make you sleepy!) actually do the opposite for him. I wonder if it is because the etiology of the movements is different in Sydenham's / possible PANDAS than it is for other movement disorders? Anyhow - things do seem to be settling down a little - so we will just wait and see for a little while longer - hopefully he can catch a break one of these days.

 

PKM

 

Hi,

Each tablet is 0.1 mg. He has been on it since last Jan. and it took me a while to figure out the doses/ times etc.. He would do great for a month or two and that his tics would come back (not as much before the pills). It was a process. I also waited to give him the 1/2 tablet in the morning until the summer b/c I was worried about his being tired in school. It did take him a couple of weeks for his body to adjust to this. Ryan was very emotional at first and a bit spacey about an hour after taking the pill. However, he now does not experience that at all. I hope things work out for you. My experience is that you need to give it time so that your child can adjust and if it's not working I would talke to the neuro. GOOD LUCK.

[guy123]

I'm just wondering how many milligrams each pill is?? (I'm pretty sure that Clonidine pills are sold in different sizes in Canada than they are in the USA. Each pill in Canada is only .025mg) I'm curious because my son just recently started taking Clonidine .05mg in the am and .05mg in the pm. He hasn't been diagnosed with Tourette's at this time but has been diagnosed with Sydenham's Chorea / possible PANDAS. When he first started taking the Clonidine he had a severe increase in movements and insomnia. Now......about 2 weeks later things seemed to have settled down a little. What were things like for your son when he first started with Clonidine?

 

In USA the smallest pill form is 0.1mg, (which is why I have to break mine into 1/4s). I wish we had a 0.025mg pill here! The pills are scored across the middle so they're easy to break in half, but then I have to break the halves in half again and sometimes they don't break evenly and I end up having to toss the pill. Fortunately, it's between $4-10 for 30 pills so it's not too expensive so I don't care if I have to throw away some of them that don't break right.