Jump to content
ACN Latitudes Forums

Vocal tics


911RN

Recommended Posts

My DS11 suffers mainly from vocal tics- simple odd noises and some complex vocal tics according to Neuro. Complex vocal tics can mimic echolalia in the form of copying cartoon phrases repetitively. May have somewhat of a OCD component to complex, vocal tics. "Being stuck on a phrase." We tried weaning Lamictal thinking some of it was coming from AED (which, is research proven- higher dose Lamictal- increased tics), however, he has failed Lamictal wean. He is on low dose Prozac 20 mg which has helped the OCD tremendously.

 

He has an underlying abnormal, nocturnal EEG, although, no history of seizures... so AED is ordered for that. As we tried to wean Lamictal lower- had noticeable cognitive loss. Brain fog, disengaged, reluctance to talk, poor school performance, irritability etc. Indicative of return of abnormal EEG. Although, tics did lessen! Cognitive status has improved with bumping back up. However, with the bump comes the vocal tics....unforunate, fine balancing act. Not willing to compromise cognitive functioning for tic suppression.

 

So.....my question is to the masses that have explored the supplement world for vocal tic suppression ;) What ONE supplement have you tried or continue to use that has proved useful in diminishing vocal tics? These seem to bother him, at times. It is intermittent- waxes and wanes. Worse at times, better at times. But, always present in some form. Often, come in the middle of speech so it makes it difficult for him to communicate coherently. I usually only add one supplement at a time so I know what is causing what (and we don't take that many) so I am looking for that one,that reaches concensus from the group, that may be helpful to start with....or, maybe my thinking is wrong on this and I need a combo of things? Or, does nothing really work and I am barking up a bare tree :D

 

His tics have really become "the" big issue in the last year. Neuro states they should diminish with puberty but they seem to be hanging with him....if tics are going to diminish- he seems to wanting to go out with a bang!!! Supposedly,tics peak about age 8-10. Yet, his have seemed to worsen from 10-11. All, in conjunction, with suspicion of PANDAS??? Neuro says he is NOT TS.

 

Dr Weil recommends the following: Taurine...which, we have never tried. Vit B 6- which he takes 50 mg daily. Mag- Taurate- never have tried. Quinine- never tried. Epsom salts- have tried a few times in past- did not apprciate much difference. Idebenone- ?- never tried or heard much about on this site. Sure I have looked it up in the past since I have it written in "my book" but have forgoten whatever I read. SAMe- have never tried.

 

Any thoughts on these or have a different supplement you have found that works well for vocal tics???

 

Interested in any feedback. TIA!

Link to comment
Share on other sites

My DS8 had major vocal tics. Last year he disrupted his classroom daily, and eventually was unable to attend school. He also repeated cartoon sounds, animal sounds, random squeaking, and high-pitched squealing ALL DAY LONG. We found out in July that he tested positive for lyme in addition to PANDAS. Within weeks of starting lyme treatment the vocal tics have completely disappeared. I have only heard them once since, and only for a few days about a month ago when we added another antibiotic and he had a temporary flare up of symptoms. His lyme/PANDAS treatment is 5 prescription meds, a dozen supplements, exercise, and diet changes. Not sure if you're interested or not, but if you are you can PM me and I'll share what specifically he is taking. I have no idea what one thing is making the difference, but I suspect it is a combination since we are doing an integrative approach. So far it is working wonders!

Link to comment
Share on other sites

I don't recall the history on your child regarding pandas treatments - did he have abx and/or ivig treatments?

 

I ask because we went through a vocal tic period early in our pandas journey - My son's "BIG" pandas episode at age 11 was almost all vocal tics. Started with throat clearing and a little laugh, and over several months developed into full blown echolalia, repeating sentences continuously up to fifty times. This was back when we didn't yet know about PANDAS, and once we found that diagnosis he was treated with abx (penicillin for twenty days) and all vocal tics disappeared. So, at that time there was no particular supplement other than the abx that fixed it.

 

Recently, when ds (now 16) and I went to Chicago for IVIG treatment, we met another PANDAS child with vocal tics. My ds described what this boy was doing as a compulsion. " He has to do it until it sounds right in his head." I thought this was interesting, as I had always assumed it was "just" a tic, not OCD. My son's more recent pandas episodes have not involved any vocal tics.

Link to comment
Share on other sites

Hi Momcap, Can you please message me what meds your son is on for the lyme and Pandas? I am unsure how to pm you. A friend directed me to this thread. I live in Canada and we have no Pandas doctors here that I know of. My son does have lyme and co-infections but the natural treatment plan he is on does not seem to be helping. He was just diagnosed with vocal tics, possibly tourettes, OCD and ADHD. So now we are wondering if he also has PANDAS. We have an LLND that can prescribe antibiotics so I am trying to gather as much information as I can. I really want to get my son better. Thanks for your help if you can.

Link to comment
Share on other sites

I don't recall the history on your child regarding pandas treatments - did he have abx and/or ivig treatments?

 

I ask because we went through a vocal tic period early in our pandas journey - My son's "BIG" pandas episode at age 11 was almost all vocal tics. Started with throat clearing and a little laugh, and over several months developed into full blown echolalia, repeating sentences continuously up to fifty times. This was back when we didn't yet know about PANDAS, and once we found that diagnosis he was treated with abx (penicillin for twenty days) and all vocal tics disappeared. So, at that time there was no particular supplement other than the abx that fixed it.

 

Recently, when ds (now 16) and I went to Chicago for IVIG treatment, we met another PANDAS child with vocal tics. My ds described what this boy was doing as a compulsion. " He has to do it until it sounds right in his head." I thought this was interesting, as I had always assumed it was "just" a tic, not OCD. My son's more recent pandas episodes have not involved any vocal tics.

 

We did high dose Azithro for 90 days in the Spring but no long term antibiotics. Tics did improve greatly but can't say they disappeared entirely. Not the cartoon vocal complex tic OCD stuff. I could not "prove" PANDAS once Cunningham lab closed research study. His specimen sits untested in OK lab. No Strep since then. Although he had ear infection on 9/14 that I susupect was also Strep. Never complained of ear infection or pain. Just sore throat- since ear was infected- docs were going to treat anyway. Never tested for Strep. Mini exacerbation on 9/14- came out of it. Now, seems to be ticcing up again. Likely due to just bumping up Lamictal?? I am thinking of starting with Taurine then adding NAC. See what happens??

 

I have some Azithro stock piled but he's had no signs of being sick...I try to save them to add on few weeks of treatment to what doc prescribes when he does get sick :P

 

Thanks for replies everyone!

Link to comment
Share on other sites

Hi Momcap, Can you please message me what meds your son is on for the lyme and Pandas? I am unsure how to pm you. A friend directed me to this thread. I live in Canada and we have no Pandas doctors here that I know of. My son does have lyme and co-infections but the natural treatment plan he is on does not seem to be helping. He was just diagnosed with vocal tics, possibly tourettes, OCD and ADHD. So now we are wondering if he also has PANDAS. We have an LLND that can prescribe antibiotics so I am trying to gather as much information as I can. I really want to get my son better. Thanks for your help if you can.

 

just bumping this new member post up

Link to comment
Share on other sites

We use NAC. Vocal tics almost non existent 2 months on. We also use 2 cups of Epsom salts in a bath most nights {6 out of 7}. The NIMH did a study in 2010 with Tourette's patients. Results were that hair pulling urges (like the tic urges) had reduced after 6 weeks and no negative side effects were found. My son stopped his NAC for one week without me realising. When the verbal tics started again I became distressed an discovered his stash. It took only 3 days for the verbal tics to disappear again and about a week and a half for the stubborn facial and shoulder tics. My son also takes 2 600mg turmeric capsules and alternating night 500mg zinc but not for tics as such. Hope this info helps a little.

Link to comment
Share on other sites

We use NAC. Vocal tics almost non existent 2 months on. We also use 2 cups of Epsom salts in a bath most nights {6 out of 7}. The NIMH did a study in 2010 with Tourette's patients. Results were that hair pulling urges (like the tic urges) had reduced after 6 weeks and no negative side effects were found. My son stopped his NAC for one week without me realising. When the verbal tics started again I became distressed an discovered his stash. It took only 3 days for the verbal tics to disappear again and about a week and a half for the stubborn facial and shoulder tics. My son also takes 2 600mg turmeric capsules and alternating night 500mg zinc but not for tics as such. Hope this info helps a little.

 

Thanks, that is helpful....now, I'm torn whether to start NAC first of Taurine??? :unsure: What dosage to you use and how much does your child weigh?? He is on low dose Prozac and I was reading on another thread one must be careful with too much NAC with SSRI.Same with Inositol and SSRI's.

 

Lamictal and Prozac are his only Rx meds. OTC- Multivitamin, B6, Vit D and CoQ10. That's it. The tics are driving me craaazy and I know they bother him at times. It has to be difficult at school for the other children. Occuring during speech makes it hard for him to communicate and socially he is challenged, anyway, so...it makes him reluctant to talk and speak (further isolating him socially).

 

I just feel like I need to try something to see if he and everyone else can get some relief from the tics!!

 

Thanks!

Link to comment
Share on other sites

Hi Momcap, Can you please message me what meds your son is on for the lyme and Pandas? I am unsure how to pm you. A friend directed me to this thread. I live in Canada and we have no Pandas doctors here that I know of. My son does have lyme and co-infections but the natural treatment plan he is on does not seem to be helping. He was just diagnosed with vocal tics, possibly tourettes, OCD and ADHD. So now we are wondering if he also has PANDAS. We have an LLND that can prescribe antibiotics so I am trying to gather as much information as I can. I really want to get my son better. Thanks for your help if you can.

 

I sent you a PM

Link to comment
Share on other sites

My son is 7. Weighs 70.5 pound. 4.4 ft. [going to be 6ft6 to 6ft8 we have been told.] No excess fat in fact underweight for height not age. NAC Dosage is 500mg X2 daily (Starts out at one daily for 2 weeks.) I am afraid I can't help with any advice as just know how the NAC seems to be working for him. I was a bit upset that I noticed the difference so quickly when he decided to skip it that week but I guess we are only 8 weeks in now not long term users yet. I do think the Epsom salts make a difference too but haven't got proof as he knows I'll do my nut if I find he hasn't used it.

 

I hope that you have success with whatever you next try. I hate hate HATE the tics. They don't help socially or emotionally at all. Our poor boysdon't need extra hurdles.

Link to comment
Share on other sites

My son is 7. Weighs 70.5 pound. 4.4 ft. [going to be 6ft6 to 6ft8 we have been told.] No excess fat in fact underweight for height not age. NAC Dosage is 500mg X2 daily (Starts out at one daily for 2 weeks.) I am afraid I can't help with any advice as just know how the NAC seems to be working for him. I was a bit upset that I noticed the difference so quickly when he decided to skip it that week but I guess we are only 8 weeks in now not long term users yet. I do think the Epsom salts make a difference too but haven't got proof as he knows I'll do my nut if I find he hasn't used it.

 

I hope that you have success with whatever you next try. I hate hate HATE the tics. They don't help socially or emotionally at all. Our poor boysdon't need extra hurdles.

 

Do you supplement with Vit C as suggested by much of the literature/research in a 1:3 ratio? I've read that if one take 500 mg NAC should take 1500 mg Vit C? I'm not a big fan of high dose Vit C for other reasons- strong family history for my son of kidney stones on both sides (mine and Dad's)-Vit C can contribute to stone forming. My son is 11.5 and weighs 120 lbs.

 

Thanks!

Link to comment
Share on other sites

He takes the NAC tablets with a mixture of juice (with some apple cider vinegar in it) and he takes a Vit C chew and a omega 3 chew each morning. Haven't done the larger supplementary dose as yet. We see a MINDD doc (BioMed) and at this point has not asked us to increase the Vitamin C. I am trying very hard to keep his water consumption up.

Sometimes I think I'm spending too much time trying to juggle it all, but when the tics came back I realized that something positive had been happening (and i hadn't even noted when they had disappeared!) i had forgotten how much my heart breaks when he tics while talking to a friend or trying to sit and listen... So now I am continuing to research and trial. They only have one life and I am going to try to make my son's as normal as I can.

Sorry off my soapbox now. :mellow:

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...