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I saw a few of you posted a few weeks ago about an increase in tics in your childeren. My son has been doing really well since about March and the last few weeks has been REALLY bad. He was so upset last night saying he is tired of dealing with tics and when are they going to go away. It is so heartbreaking. I really think it is environmental allergies but not sure what to do about it. Has anyone had any luck with allergy shots? For those of you that noticed an increase, are you still seeing an increase or have things settled. Any insight is appreciated. Thanks so much.

 

Leslie

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We are still seeing an increase here after doing really well since January. This is the longest waxing period we have had in 4 years and I am really starting to worry that it will not ever settle. I am pretty certain that food is not an issue for him but I also wonder if he has some seasonal allergy that triggers his waxing periods. We just started him on Clonidine about 5 days ago. I am hoping and praying that it will bring him some relief.

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We are still seeing an increase here after doing really well since January. This is the longest waxing period we have had in 4 years and I am really starting to worry that it will not ever settle. I am pretty certain that food is not an issue for him but I also wonder if he has some seasonal allergy that triggers his waxing periods. We just started him on Clonidine about 5 days ago. I am hoping and praying that it will bring him some relief.

 

How is he doing on the chlonidine? We are currently on Topamax which was doing a good job but I lowered the dose in July and I think that may be why we are seeing an increase. I am thinking of trying the chlonidine if when I increase the topamax again he gets the side effects- makes his eyes sore. Hope is is giving your son some relief. It is so hard to medicate and I am still looking for alternatives, but sometimes it must be done in order for them to function. I wish you the best.

 

Leslie

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My daughter's tics are the worst I have ever seen them right now. They started waxing a few weeks ago and have yet to subside. Her neurologist suggested Intuniv (but it's $100 a month even after insurance!)so he wrote her a script for Tenex/Guanfacine (the short acting version of Intuniv). I haven't started her on it yet, but am wondering if Clonidine or Topomax would be a better medication to try. Are your kids having success with them? How old are they and what dosage are they taking? Meds has always been our "last resort" but after these past few weeks I am really starting to consider our option.

 

Thanks in advance and best wishes for your children!

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I saw a few of you posted a few weeks ago about an increase in tics in your childeren. My son has been doing really well since about March and the last few weeks has been REALLY bad. He was so upset last night saying he is tired of dealing with tics and when are they going to go away. It is so heartbreaking. I really think it is environmental allergies but not sure what to do about it. Has anyone had any luck with allergy shots? For those of you that noticed an increase, are you still seeing an increase or have things settled. Any insight is appreciated. Thanks so much.

 

Leslie

 

Years ago when my son started with horrible frequent vocal and motor tics- I started him on a Inositol/choline supplement. The vocal tics were very similar to bird like noise- heeing, hooting and peeping and it was driving me CRAAAZY!! Hee- Hee- Hoo repeatedly. At the time- he was not very aware of it and it did not seem to really bother him. Meanwhile, I thought I was living in a bird sanctuary. :wacko: I did not use the tremendously high doses like you see recommended by many psychiatric med sites. I think those sites say one can go as high as 12 GM= 12,000 mg a day! I found Source Naturals at a local supplement store that contained 400 mg Inositol and 400 mg of Choline in tablet form and gave it twice a day. He was 9 (now 11) at the time and probably weighed about 75 lbs. His tics went away within 2 weeks on the supplement!

 

I read somewhere once and have never been able to find it again that Inositol should be given with Choline because they are somewhat like synergenistic ions (need Vit D with calcium type thing). Not good to have one without the other. I have read on forums that some parents don't like to use choline for different reasons....however, our experience was he tolerated it fine, no side effects and tics went away.THAT's what I was looking for!! That was first venture into any alternative supplements and I was really scared to try it, however, it was either try it or lose my sanity. I kept him on it for about 2 months then weaned with no return of bird like noise tics.

 

We did Intuniv for 1 year- did well for 5 months then started having too many side effects (sleep issues). And, following each Strepisode- even on Intuniv- he would still get motor/vocal tics. He is no longer on Intuniv. We have never tried Clonidine. Topomax is no-go due to strong family history (both sides- me and DH)of kidney stones. His brother had 6 mm kidney stone at 10 years old and Topomax has increased risk of stones so we have never "gone there." Luckily, his vocal tics now cause voice pitch breaks with some peeping before words but we have never returned to what we had the summer he was 9.

 

 

I am a firm believer that the Inositol/Choline was responsible for making the tics go away. DS is on SSRI now-which according to research- Inositol does not seen to have same effect once those are used?? If not, I think I would put him back on it??

 

HTH

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I saw a few of you posted a few weeks ago about an increase in tics in your childeren. My son has been doing really well since about March and the last few weeks has been REALLY bad. He was so upset last night saying he is tired of dealing with tics and when are they going to go away. It is so heartbreaking. I really think it is environmental allergies but not sure what to do about it. Has anyone had any luck with allergy shots? For those of you that noticed an increase, are you still seeing an increase or have things settled. Any insight is appreciated. Thanks so much.

 

Leslie

 

Years ago when my son started with horrible frequent vocal and motor tics- I started him on a Inositol/choline supplement. The vocal tics were very similar to bird like noise- heeing, hooting and peeping and it was driving me CRAAAZY!! Hee- Hee- Hoo repeatedly. At the time- he was not very aware of it and it did not seem to really bother him. Meanwhile, I thought I was living in a bird sanctuary. :wacko: I did not use the tremendously high doses like you see recommended by many psychiatric med sites. I think those sites say one can go as high as 12 GM= 12,000 mg a day! I found Source Naturals at a local supplement store that contained 400 mg Inositol and 400 mg of Choline in tablet form and gave it twice a day. He was 9 (now 11) at the time and probably weighed about 75 lbs. His tics went away within 2 weeks on the supplement!

 

I read somewhere once and have never been able to find it again that Inositol should be given with Choline because they are somewhat like synergenistic ions (need Vit D with calcium type thing). Not good to have one without the other. I have read on forums that some parents don't like to use choline for different reasons....however, our experience was he tolerated it fine, no side effects and tics went away.THAT's what I was looking for!! That was first venture into any alternative supplements and I was really scared to try it, however, it was either try it or lose my sanity. I kept him on it for about 2 months then weaned with no return of bird like noise tics.

 

We did Intuniv for 1 year- did well for 5 months then started having too many side effects (sleep issues). And, following each Strepisode- even on Intuniv- he would still get motor/vocal tics. He is no longer on Intuniv. We have never tried Clonidine. Topomax is no-go due to strong family history (both sides- me and DH)of kidney stones. His brother had 6 mm kidney stone at 10 years old and Topomax has increased risk of stones so we have never "gone there." Luckily, his vocal tics now cause voice pitch breaks with some peeping before words but we have never returned to what we had the summer he was 9.

 

 

I am a firm believer that the Inositol/Choline was responsible for making the tics go away. DS is on SSRI now-which according to research- Inositol does not seen to have same effect once those are used?? If not, I think I would put him back on it??

 

HTH

 

 

We have been on the clonodine for 12 days now. We have slowly increased the dosage to limit the side effects. Right now he is taking .075 (1 pill in the morning, 1 after school and 1 before bed). we have yet to see any improvement. His vocal tic is the worst it has ever been and this has also been the longest waxing we have ever had. I was told by my neurologist that it could take up to 3 or 4 weeks to see if the clonodine is working. I am trying to be patient but this noise is just driving me crazy. If the clonodine doesn't help, i really don't know what we are going to do.

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We have been on the clonodine for 12 days now. We have slowly increased the dosage to limit the side effects. Right now he is taking .075 (1 pill in the morning, 1 after school and 1 before bed). we have yet to see any improvement. His vocal tic is the worst it has ever been and this has also been the longest waxing we have ever had. I was told by my neurologist that it could take up to 3 or 4 weeks to see if the clonodine is working. I am trying to be patient but this noise is just driving me crazy. If the clonodine doesn't help, i really don't know what we are going to do.

 

Three Clonidine pills is 0.075mg?

 

Does that mean they are 0.025mg each?

 

I take 0.025mg at night but we only have 0.1mg pills so I have to break them into quarters. They have the smaller doses in Canada right?

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I saw a few of you posted a few weeks ago about an increase in tics in your childeren. My son has been doing really well since about March and the last few weeks has been REALLY bad. He was so upset last night saying he is tired of dealing with tics and when are they going to go away. It is so heartbreaking. I really think it is environmental allergies but not sure what to do about it. Has anyone had any luck with allergy shots? For those of you that noticed an increase, are you still seeing an increase or have things settled. Any insight is appreciated. Thanks so much.

 

Leslie

 

Years ago when my son started with horrible frequent vocal and motor tics- I started him on a Inositol/choline supplement. The vocal tics were very similar to bird like noise- heeing, hooting and peeping and it was driving me CRAAAZY!! Hee- Hee- Hoo repeatedly. At the time- he was not very aware of it and it did not seem to really bother him. Meanwhile, I thought I was living in a bird sanctuary. :wacko: I did not use the tremendously high doses like you see recommended by many psychiatric med sites. I think those sites say one can go as high as 12 GM= 12,000 mg a day! I found Source Naturals at a local supplement store that contained 400 mg Inositol and 400 mg of Choline in tablet form and gave it twice a day. He was 9 (now 11) at the time and probably weighed about 75 lbs. His tics went away within 2 weeks on the supplement!

 

I read somewhere once and have never been able to find it again that Inositol should be given with Choline because they are somewhat like synergenistic ions (need Vit D with calcium type thing). Not good to have one without the other. I have read on forums that some parents don't like to use choline for different reasons....however, our experience was he tolerated it fine, no side effects and tics went away.THAT's what I was looking for!! That was first venture into any alternative supplements and I was really scared to try it, however, it was either try it or lose my sanity. I kept him on it for about 2 months then weaned with no return of bird like noise tics.

 

We did Intuniv for 1 year- did well for 5 months then started having too many side effects (sleep issues). And, following each Strepisode- even on Intuniv- he would still get motor/vocal tics. He is no longer on Intuniv. We have never tried Clonidine. Topomax is no-go due to strong family history (both sides- me and DH)of kidney stones. His brother had 6 mm kidney stone at 10 years old and Topomax has increased risk of stones so we have never "gone there." Luckily, his vocal tics now cause voice pitch breaks with some peeping before words but we have never returned to what we had the summer he was 9.

 

 

I am a firm believer that the Inositol/Choline was responsible for making the tics go away. DS is on SSRI now-which according to research- Inositol does not seen to have same effect once those are used?? If not, I think I would put him back on it??

 

HTH

 

 

We have been on the clonodine for 12 days now. We have slowly increased the dosage to limit the side effects. Right now he is taking .075 (1 pill in the morning, 1 after school and 1 before bed). we have yet to see any improvement. His vocal tic is the worst it has ever been and this has also been the longest waxing we have ever had. I was told by my neurologist that it could take up to 3 or 4 weeks to see if the clonodine is working. I am trying to be patient but this noise is just driving me crazy. If the clonodine doesn't help, i really don't know what we are going to do.

 

We are parents of a 12 your old daughter recently diagnosed with TS. This really just came at us like a freight train since she seemed perfectly "normal" up until 5 weeks ago. She had minor little tics as a younger child that went away quickly but this is unimaginable. Her tics are violent body spasms with snorting and yelling. We went to ped neurologist who put her on chlonidine. It has been just 8 days but her tics seem to be getting worse. I am looking into natural avenues and don't know what to think. There are no environmental physicians in my area of Ohio. I've read some things about chemical sensitivities and wonder if she might have that and the meds are making it worse? We are heartbroken and are trying to figure it all out. Doctor says keep taking meds - doesn't know anything about homeopathics. Right now she has just increased her doseage to 1/2 tab in morning and 1/2 tab at night. She is so depressed and angry, confused, doesn't know why God doesn't help... HELP!

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we have had our son on clonadine for 3 days and we are using the patch. Looks like his tics are less severe but still there but he is very tired and falling asleep at 5 pm and I was told at school he was very tired Im hoping this goes away. Its going to be a hard decision to choose to have tics or a child that has no energy. Going from completly normal and fine into this rapid onset of tics 6 weeks ago is really making me sad for him.

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