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Son's tics exploding, trying to figure out what to do


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My 10 year old son was diagnosed with tourettes almost two years ago. He also has mild/moderate ADHD and Generalized anxiety Disorder. Since the diagnosis, we have managed the tics well with Cod liver oil and occasional epsom salt baths. About 3 months ago, he started getting allergy shots for various environmental, non food, allergies. He usually gets the shots on Monday. His tics would usually get worse on Tuesday and be back to normal on Wednesday.

 

Last week though, his tics exploded on Thursday and have not stopped since. I'm not sure that it is due to the allergy shots. I'm thinking not, but perhaps. It is mostly just one tic. He shakes his head as if to get his hair out of his eyes. This tic actually started about a month ago when we let his bangs get too long. He does it about 8-10 times a minute.

 

I'm pretty paniced about this. I don't want this to be his new status quo. There are several things that I am looking into. I do have Sheila Roger's book and will go through it. But it will take a little bit of time. In the meantime, I've spoken with his pediatrician and his neurologist. I've also done considerable research on this website. His pediatrician is the most caring doctor you could ever imagine, but she doesn't support the type of integrative approachs discussed on this forum. So I don't think she will be of much help. Ok, so here is where I'm at. I'd appreciate any feedback:

 

Prescriptions - His neurologist suggested 1 mg (to start) of Guanfacine and/or .25 mg (to start) of Clonazapun. I really didn't want to go this route, but now that I'm watching my son tic this severely, I just want to get him relief. When I spoke to the Doctor, I told him I'd do some research, talk to my wife and get back to him. But an hour later, when I watched my son still ticcing severely in the schoolyard, I called the neurologist and told his hurse that I want a script for the Clonazapun. Clonazapun appealed to me more than Guanfacine because I would only give it to him when his tics were bad. As opposed to having him on permanent medication. So I asked for the script but I don't have the medication yet.

 

Fish Oil - I currently give him 1/2 teaspoon every morning. Perhaps I should increase that to a full teaspoon.

 

Bontech TS plus control with Vitamin D - I've read on this board that Bontech products have been helpful to some. The Vitamin D part scares me though. Several months ago, my son's pediatrician suggested that he should get more Vit D, saying that children in our area are not getting enough. I found a multi that had 400 (sorry, don't know the unit) instead of 200. His tics immediately increased.

 

Bontech Mag Taurate - I'm all for giving him a magnesium supplment. Epson salt baths worked well for awhile, but he doesn't take them consistently and perhaps he needs a more consistent source. But there are so many types of Magnesium that it's hard to follow. I've also read that taurine can be very helpful, but can be bad for some. So I don't know what to make of that.

 

I'm also wondering about hypnosis/hypnotherapy and metals testing/detox. Actually, my mind is open. So feel free to suggest away.

 

I guess I may also need to try to find food triggers. But honestly, I'm skeptical that food set this off. I don't think he has eaten anything out of the ordinary.

 

Any info or suggestions would be most appreciated.

 

Thanks

Alan

Edited by BigAl
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Have you thought about having a rapid strep test done? If your Doc is not on board, take him to a CVS minute clinic, if it's negative they'll send it to be cultured. Both my boys tested + this weekend. One has clear symptoms and had a + rapid, my other son rapid negative but + culture. Also Myco P is crazy bad this year. Both of these have been the lone contributor to my son's explosion of tics this year. He was put on antibiotics and they went right away.

Just a thought...

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fish oil increased tics for my son too and many others with TS have reported the same

we only use flaxseed oil now, along with salmon as the fish Omega 3 source

 

the allergy shot could have been a trigger...depends what is in it?

 

I am admittedly biased because of my son's horrid experience on meds, but if you feel they were needed, I hope you at least see improvement and no bad side effects

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Thank you for your responses.

 

I'll look into getting the strep test. FWIW, he had been tested for PANDAS awhile ago and it was negative. But I guess that's not what you are getting at.

 

He's been on fish oil for almost 1.5 years. When we first put him on it, his tics reduced by 90%. They stayed reduced for quite a long time.

 

Should I switch to flax seed (or krill) oil? Again though, for 1.5 years it helped a lot.

 

Chemar, what meds was your son on? Have you heard any success stories with Clonazapam or Guanfacine.

 

Anybody have any thoughts about the Bontech products that I mentioned below.

 

Thanks again

Edited by BigAl
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yes Al a child can have PANDAS induced tics without showing symptoms of strep throat. You may want to check our PANDAS forum here and also look at http://www.pandasnetwork.org

 

Many here have had success with BonTech for tics, but some did not, as some people may be sensitive to some of the ingredients. We never used them, but I did base my son's treatment on Bonnie's plan (see my signature link)

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Ok, so morning comes and it's a new day. Maybe his tic explosion is over. Very modest tics this morning. A couple of head shakes and a blink is all I noticed.

 

So if in fact this episode is over, does that negate the need for the strep test?

I'm also wondering if there is something in the morning routine that may be a tic protagonist. For the first half of the morning, I noticed no tics at all. It was only just before he left for school that I noticed a little. So I saw no tics at all until he had:

 

multivitamin, probiotic, a couple of packaged baby carrots, pancakes with 100% maple syrup, fishoil. Those are all part of his regular routine. He has had those exact things probably 2-3 days a week for the last two years. Although, we just switched back to this particular probiotic last week about the time the tics episode started.

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what is in that probiotic?

if using it correlates with the increase in tics...you may have found the trigger!

 

glad things have settled

 

remember too that sometimes with TS, waxing and waning can occur and you may never know why....it has been suggested it may be some "internal" trigger, maybe hormonal or a subtle shift in the dopamine dynamic?

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Hi Chemar

 

Yes, maybe the probiotic was the trigger. But I'm not sure because he'd been taking this brand for quite some time. My wife bought the wrong brand a few weeks ago. We used it up and then went back to this one. Ok here goes, it contains;

 

750 Million Organisms of bifidobacterium lactis, lactobacillus acidophilus, lactobacillus salivarius, and lactobacillus plantarum.

 

other ingredienta: xylitol, sorbitol, cellulose, Stearic acid (vegetable source), Natural berry flavors, malic acid, beet powder, magnesium stearate (vegetable source), Silica and FOS (fructooligosaccharides)

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oh ok so he was taking that probiotic before and now is back on it? I thought it was one that had been absent from his system a long time. Well, yes, a change in probiotics could have caused a subtle change in his system...and as we know with TS kids, sometimes even tiny changes can have enormous results!

If he tolerated it before then he is likely ok with those ingredients...the probiotics are fine but I know my son cannot handle sorbitol or xylitol or malate and he also has frustose malabsorption so we avoid it as any kind of additive in all forms...but that does not mean your child is sensitive to those things.

 

I guess the thing to do is document this for future reference

 

Thankful for you that it appears to be on the wane

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Hello,

I was about to post the same thing - but then I saw your post. My daughter's tics which have been really good for quite awhile have exploded as well. She waves her hand in front of her face over and over and over like she it batting at a fly. She can't get her work done for she has to keep doing it! It is so frustrating for her. She also came home today complaining of a headache and her throat feeling weird. I immediately thought strep and was almost relieved at the thought that there was a source for her tics - but the rapid strep came up negative. The doc gave me a prescription for Biaxin in case she got worse in the next few days. I wonder if I should give it to her?

Interestingly as well - her inattentive ADHD has been bad lately. So we doubled her her fish oils and vitamin D. I wonder if that is the problem. I have heard others say that vitamin D and fish oil can increase tics - so maybe she too now is reacting to it?

 

Good luck with your son. I am glad things aren't as bad as they were. I guess we never know what tomorrow will bring.

Edited by mythree
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Hello,

I was about to post the same thing - but then I saw your post. My daughter's tics which have been really good for quite awhile have exploded as well. She waves her hand in front of her face over and over and over like she it batting at a fly. She can't get her work done for she has to keep doing it! It is so frustrating for her. She also came home today complaining of a headache and her throat feeling weird. I immediately thought strep and was almost relieved at the thought that there was a source for her tics - but the rapid strep came up negative. The doc gave me a prescription for Biaxin in case she got worse in the next few days. I wonder if I should give it to her?

Interestingly as well - her inattentive ADHD has been bad lately. So we doubled her her fish oils and vitamin D. I wonder if that is the problem. I have heard others say that vitamin D and fish oil can increase tics - so maybe she too now is reacting to it?

 

Good luck with your son. I am glad things aren't as bad as they were. I guess we never know what tomorrow will bring.

 

Hi Mythree

 

How old is your daughter? Personally, I'm pretty bummmed about this. I had hoped it wouldn't get this bad. And I was a bit premature in thinking they were improving today. They are a little better than the last few days, but not much. The thing is, they were fine in the morning. Then just b4 he left for school, I saw a few tics. And apparently they continued to get worse.

 

Does your daughter have fewer tics in the morning? I wonder what I can glean from that. For one thing, I'm going to skip his morning routine of fish oil, probiotic and vitamin and see what happens.

 

I too don't know what to do about the fish oil. We started giving it to him about 1.5 years ago and it really helped. Do I switch to flax seed oil? Increase the amount of fish oil? Vitamin D is another mystery. 10 months ago or so, he started ticcing more when we gave a multi with 400 iu. But maybe it was a coincidence.

 

Are you considering the Bontech products? I am, but I'm confused about them. It's overwhelming. I wish a could find a doctor that would direct me through this.

 

I read somewhere that TS patients have a greater incidence of Migraines. That may explain the headaches. My son was complaining of headaches awhile back. We suspected migraines.

 

I've got a script filled for Clonazepam. We are starting at 0.25 mg as needed. My doctor assures me that it's safe and has been around quite awhile. But it can make him drowsy. I may give it to him tomorrow, but first I want to see what happens when he doesn't have his morning vitamin/supplements.

 

I wish you and your daughter the best.

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Hi Al,

My daughter is 11. We have been following our own regime that was given to us by an MD that also specialises in autisim, adhd - but with natural approaches.

She has been doing great on the supplements. Tic wise at least. But her adhd improvement has hit a standstill.

I understand your frustration. It is so exhausting and it feels like we live on a rollercoaster - analysing everything she eats or doesn't.

No, I haven't done Bonnies' vitamins - but rather followed those from the specialist doctor. We added methyl B12 and Folic acid into the mix as well (for her adhd) so perhaps that is what is causing the outbreak in her tics.

 

Yes, my daughter does have fewer tics in the morning - but I have always assumed it is because she isn't as tired. I think when I see her at the end of the day - she is worn out from suppressing them.

 

I have never considered giving medication to my daughter.....until now. I understand where you are coming from. Sometimes I think it should be quality of life in her young little day and I dream of her not having to worry about tics and adhd etc etc. I feel bad for her analysing everything she eats and being on countless elimination diets and supplements and vitamins. The side effects of the drugs that they list terrify me - so that is why I haven't done it yet. But sometimes I envy those people that have taken the plunge and it has worked out for them. We have been going the natural/diet/supplement route for about 6.5 years now. Today she asked me what it was like to be 'still' she asked me how it felt not having to worry while I was having coffee with my friends if I would make weird movements or have to think about holding them in. She wasn't saying it in a nasty way - more just inquisitive. It just really hit me though.

I wish you all the best. Hang in there. Sending good thoughts to your son too - that this will pass...

 

Hello,

I was about to post the same thing - but then I saw your post. My daughter's tics which have been really good for quite awhile have exploded as well. She waves her hand in front of her face over and over and over like she it batting at a fly. She can't get her work done for she has to keep doing it! It is so frustrating for her. She also came home today complaining of a headache and her throat feeling weird. I immediately thought strep and was almost relieved at the thought that there was a source for her tics - but the rapid strep came up negative. The doc gave me a prescription for Biaxin in case she got worse in the next few days. I wonder if I should give it to her?

Interestingly as well - her inattentive ADHD has been bad lately. So we doubled her her fish oils and vitamin D. I wonder if that is the problem. I have heard others say that vitamin D and fish oil can increase tics - so maybe she too now is reacting to it?

 

Good luck with your son. I am glad things aren't as bad as they were. I guess we never know what tomorrow will bring.

 

Hi Mythree

 

How old is your daughter? Personally, I'm pretty bummmed about this. I had hoped it wouldn't get this bad. And I was a bit premature in thinking they were improving today. They are a little better than the last few days, but not much. The thing is, they were fine in the morning. Then just b4 he left for school, I saw a few tics. And apparently they continued to get worse.

 

Does your daughter have fewer tics in the morning? I wonder what I can glean from that. For one thing, I'm going to skip his morning routine of fish oil, probiotic and vitamin and see what happens.

 

I too don't know what to do about the fish oil. We started giving it to him about 1.5 years ago and it really helped. Do I switch to flax seed oil? Increase the amount of fish oil? Vitamin D is another mystery. 10 months ago or so, he started ticcing more when we gave a multi with 400 iu. But maybe it was a coincidence.

 

Are you considering the Bontech products? I am, but I'm confused about them. It's overwhelming. I wish a could find a doctor that would direct me through this.

 

I read somewhere that TS patients have a greater incidence of Migraines. That may explain the headaches. My son was complaining of headaches awhile back. We suspected migraines.

 

I've got a script filled for Clonazepam. We are starting at 0.25 mg as needed. My doctor assures me that it's safe and has been around quite awhile. But it can make him drowsy. I may give it to him tomorrow, but first I want to see what happens when he doesn't have his morning vitamin/supplements.

 

I wish you and your daughter the best.

Edited by mythree
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Hi Mythree

 

I don't know what to say. It's got to be very hard to hear that from your daughter.

 

as for the medication, I just don't put that much weight in lists of possible side-effects. It seems like every pharmaceutical commercial has a huge list for every medicine. I trust my son's pediatrician. She agrees with the neurologist that it is safe. We are starting at a very low dose. And I will only be giving to him when he really needs it. If there is an adverse reaction, we'll stop.

 

Best

Alan

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