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Help-my son has motor & vocal tics


patty

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Hi everyone.

 

I have been reading the postings in this forum for the past four months, but never had to courage to post. I am so frighten by my son's tics that I cannot talk or write about it without having an emotional breakdown. It has been about 6 months, I have finally start to realized my son's tics may be more than a simple childhood tic.

 

Shortly after my son turned 6, he had a sudden onset of acute head nodding tic. It was jerky, frequent and in multiple. The head tic lasted all day, regardless of what he was doing. It was worse when he is eating, doing reading, doing homework and at night. He also fridgeted alot, like he couldn't be still. About 3 weeks later, he started a vocal tic, "huh". He did that thru out the day and most noticeable while eating, watching TV and reading to him. In the meantime, I also noted some jumping, but that only lasted about a few days. Then shoulder shrugs developed and lasted for about 2/3 weeks.

 

My son's ped and neurologist both advised me to ignore the tics. If it becomes bothersome and painful, we can try Guanficine to reduce the symptoms. I didn't do it becasue the unpleasant side effects may follow.

 

Unfortunately, my son's head nodding was giving him headache and neck pain due to the intensity and frequency. So I decided to try alternative treatments instead of Guanficine. So we started acunpuncture to relax his nervous system, chiropractic to reduce pain and to realign his neck and craniosacral therapy all at the same time.

 

About 2 weeks into the above treatment plan, we start to see some improvement with the head tic and his body was more stable, but the vocal remained.

 

A month later, I decided to consult my son's Chinese doctor regarding his tics since he treated my son for his asthma and allergy and we had great results. The Chinese doctor recommended B1 & B12 and a month on the Chinese herb.

 

At this time, about 3 months later, the motor and vocal tics were slowly improving, that's when I read Tics and Tourette's by Sheila Rogers and wanted to see if there is a link between my son's allergy and his tics. Also, during this last 3 weeks, everytime he takes 5 steps forward, he takes 5 steps back. With summer approaching, I thought it would be a good idea to see a naturalpathic doctor along with a NAET doctor to desensitize his allergies.

 

We spent our summer treating wheat, gluten, oat, oat bran, brown and white rice, milk, casein, yogurt, cheeze, eggs and chicken. It was such an exhausting process! If anyone out there have tried the NAET treatment, you know what I mean!! In the meantime, the naturalpathic doctor put my son on 3 different unda numbers to detox him, which induced more symptoms. For example, increased head nods, increased facial tics that I haven't seen before. We managed to finished the first set of Unda #s. The 2nd set of Unda #s caused an explosion of head nods and jumping off his feet. We stopped and tried a 3rd set of Unda #s and again increased symptoms. So I finanlly stop all Unda #s. When my son's symptoms subsided, the naturalpathic dr. recommended giving him probiotic. We did and again, increased my son's tics. So now my son started school, I decided to take a couple of months off from all treatments and evaluate if all this is helping my son.

 

Sorry for being so detailed and long.

 

Anyways, here are my questions:

 

Any advice on what to do next?

 

Anyone have tried NAET and helped with tic?

 

Anyone have seen increased symptoms using a naturalpathic doctor?

 

Please help, any advice is welcome!

 

Patty

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Hi Patty and welcome

 

I dont have personal experience with NAET so cannot comment there

 

I just do want to mention that our experience over the last 7 years has been that once you find something that works...stick with it! and make any changes with caution and slowly!

 

Because we are all such unique individuals and because, if your child has Tourette's as opposed to tics induced by other factors alone, the fine tuned biochemistry can be turned upside down if we add substances that, although inherently good, may just not be suited to that particular individual

 

It is very possible that your child is reactive to one or more of the UNDA remedies being used. I know nothing about this type of treatment so I stress again I am just speculating...not saying this as a fact

 

you mentioned that at one point your son was responding favorably to the acupuncture, chiropracty and supplements recommended by the Chinese Medicine practitioner.....and that it was when the allergy remedies were added that the tics intensified. That would be a red flag to me!

 

anyway, I dont want to add to your confusion but rather just to let you know that this is a fine line we all have had to walk, and that yes, I think you are wise to stop everything and then GRADUALLY begin again, preferably with those things that proved helpful at the start...and then move slowly forward.

 

Please dont see this as a hopeless journey you have been on Patty....many times the right treatments are a trial and error thing and yes, of course you are upset, this is your precious child!....but as so many of us who have been thru the frustrations of trying to find what works can attest....it IS worth it.

Do stay in touch here too as I know our other members will add their experience and knowledge and always be here to support you whether it is info you need or just because it is good for you to be able to talk and have understanding listeners

 

a (((hug))) for you too...........you are clearly a very special mom :wacko:

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since you said there was a sudden onset of tics you may want to check into PANDAS - was he sick just before the onset?

 

Also - all the triggers you mention were always worse for my son too - being read too, watching tv, eating, bedtime and we also found driving in the car was another trigger.

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Hi Patty and welcome

 

I dont have personal experience with NAET so cannot comment there

 

I just do want to mention that our experience over the last 7 years has been that once you find something that works...stick with it! and make any changes with caution and slowly!

 

Because we are all such unique individuals and because, if your child has Tourette's as opposed to tics induced by other factors alone, the fine tuned biochemistry can be turned upside down if we add substances that, although inherently good, may just not be suited to that particular individual

 

It is very possible that your child is reactive to one or more of the UNDA remedies being used. I know nothing about this type of treatment so I stress again I am just speculating...not saying this as a fact

 

you mentioned that at one point your son was responding favorably to the acupuncture, chiropracty and supplements recommended by the Chinese Medicine practitioner.....and that it was when the allergy remedies were added that the tics intensified. That would be a red flag to me!

 

anyway, I dont want to add to your confusion but rather just to let you know that this is a fine line we all have had to walk, and that yes, I think you are wise to stop everything and then GRADUALLY begin again, preferably with those things that proved helpful at the start...and then move slowly forward.

 

Please dont see this as a hopeless journey you have been on Patty....many times the right treatments are a trial and error thing and yes, of course you are upset, this is your precious child!....but as so many of us who have been thru the frustrations of trying to find what works can attest....it IS worth it.

Do stay in touch here too as I know our other members will add their experience and knowledge and always be here to support you whether it is info you need or just because it is good for you to be able to talk and have understanding listeners

 

a (((hug))) for you too...........you are clearly a very special mom :wacko:

 

 

Chemar,

 

Thx for your wisdom and warm welcome. I have been feeling so alone, depress and frustrated by my son's tics that I can't imagine being happy ever again. It is just recently that I start to feel better because i learned acceptance. And also, he is not as bad as before. I am so glad that I found this site because now i can connect with people who have similar problems.

 

Patty

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since you said there was a sudden onset of tics you may want to check into PANDAS - was he sick just before the onset?

 

Also - all the triggers you mention were always worse for my son too - being read too, watching tv, eating, bedtime and we also found driving in the car was another trigger.

 

 

I believe my son's neurologist did that already. I remember he did some blood work for bacteria infection. And it was negative. He was not sick before the onset of his tics.

 

In looking back, since my son has allergy, he does this thing I guess is gramcing with his nose. And i have seen many people do that who has allergy, so I never gave it a second thought. I am wondering if this is a tic?

 

Does your son's triggers change? As my son's tics subsided, the triggers used to bring on more tics do not bother him. And when his tics get worse, some or all of his triggers seem to bother him again. And on a good day, with very little tics, all of a sudden he would have clusters of head nods, anywhere from 5 minutes to a few hours and then everything subsides again. Is this normal for tic disorder or TS?

 

I am trying to find triggers and am frustrated that I can't seem to find a pattern.

 

Thx!

 

Patty

 

Patty

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Patty,

 

First, let me say that I am far from an expert on this topic. In fact, I could have written your post. My life has been turned upside down when my son went through the same exact thing in April. It is very frightening, but it does help to know that you are not alone.

 

I agree with the poster that suggested the blood testing for strep titers. However, regardless of the outcome, I would see if your Dr. would prescribe a course of antibiotics anyway. Jordan has never tested positive for strep or even elevated strep titers. However, his neurologist, who has done a lot of the pioneering research on PANDAS, feels that there are many other strep-like infections that can have a similar impact. So, as an experiment, when this began for Jordan in April, he went on 7-days of Zithromax. Within 2 weeks, all symptoms completely disappeared. He had another onset in July, and again, after a course of Zithromax, they were gone. We are now on our 3rd onset. We have just completed the antibiotics, and are waiting to see if they will work again.

 

I would double check with your Dr. to make sure he ran the appropriate blood tests, and discuss a course of antibiotics. It may not work, but it's a low-risk option that could have a big reward. I'm really not sure if this is the answer, but it has worked for us 2 out of 2 times. Like I said, it's worth a try.

 

Good luck!

Julie

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Patty

I just want to mention that "bloodwork for bacteria" is not the same as blood test to assess elevated streptococcal antibodies (Anti-DNAse B and Antistreptolysin titers (ASO)).

 

The strep antibody titre tests are very specific!

 

 

Thx Chemar! I will call the neurologist and figure out what tests were performed.

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Patty,

 

First, let me say that I am far from an expert on this topic. In fact, I could have written your post. My life has been turned upside down when my son went through the same exact thing in April. It is very frightening, but it does help to know that you are not alone.

 

I agree with the poster that suggested the blood testing for strep titers. However, regardless of the outcome, I would see if your Dr. would prescribe a course of antibiotics anyway. Jordan has never tested positive for strep or even elevated strep titers. However, his neurologist, who has done a lot of the pioneering research on PANDAS, feels that there are many other strep-like infections that can have a similar impact. So, as an experiment, when this began for Jordan in April, he went on 7-days of Zithromax. Within 2 weeks, all symptoms completely disappeared. He had another onset in July, and again, after a course of Zithromax, they were gone. We are now on our 3rd onset. We have just completed the antibiotics, and are waiting to see if they will work again.

 

I would double check with your Dr. to make sure he ran the appropriate blood tests, and discuss a course of antibiotics. It may not work, but it's a low-risk option that could have a big reward. I'm really not sure if this is the answer, but it has worked for us 2 out of 2 times. Like I said, it's worth a try.

 

 

Julie,

 

I am so happy that the antibiotic works for your son. As a mom with a son with similar problem. I know it must be a relieve to know that there is a cure. I am just tired of all the not knowing. All the doctors told me that there is no cure, and the anticipation of not knowing what the tics willl become is enough to put me over the edge ( my son has various motor, facial and vocal tics that changes over time, with the exception of the head nodding that is always there). Most mornings I wake up with anxiety not knowing what the day is like. My son's tic has turned my life upside down. It has been a long 6 months, but I am so thankful that he is healthy, happy, doing well in school and making friends. Everyday I pray that I am closer to finding answers to my son's tics. I have so many questions....

 

Does your son's tic triggers vary from time to time? For my son, he started with the an acute case of head noddings. It was frequent and jerky. And it was most frequent while eating, watching TV, reading to him, doing his homework, and changing into a new environment. As the head nods subside, some or all of the tic triggers do not bother him. Or when he is on a good tic less day, out of the blue he would have clusters of head nods. Is this typical of a tic or TS?

 

I am so hoping that he has transcient tics that will eventually work itself out.

 

Patty

 

Anyways, does your son tic triggers vary from time to time. I am very frustrated that I am not really seeing a pattern.

Good luck!

Julie

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One thing caught my attention in your first post. The counting steps forward and backward. That can be a symptom of OCD and OCD is associated with Pandas. My daughter has Pandas and she has had all the facial and vocal tics you are describing: the huh sound every few seconds; eye blink; mouth stretching; coughing and they have been so severe they have caused her extreme pain. She also has ocd without the counting - but that was the first thing the doctor asked when they suspected ocd "are you counting anything?"

 

By now you probably know that Pandas symptoms include tics and ocd. My daughters onset was pretty sudden but more over the course of a week not overnight. Her titer levels are still going up even though we have had her on azithromycin -zithromax prophylactically the last four weeks. Her tics have improved and her ocd but we are also on other meds and there is some fluctuation with her symptoms. As a point of reference her most recent levels were ASO 244 and DNase 960.

 

She is now scheduled for surgery to have her adnoids/tonsils removed. The ent thinks there may be acting as a reservoir for the strep so she has an 80% chance of significant improvement - 20% no improvement.

 

Good luck

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One thing caught my attention in your first post. The counting steps forward and backward. That can be a symptom of OCD and OCD is associated with Pandas. My daughter has Pandas and she has had all the facial and vocal tics you are describing: the huh sound every few seconds; eye blink; mouth stretching; coughing and they have been so severe they have caused her extreme pain. She also has ocd without the counting - but that was the first thing the doctor asked when they suspected ocd "are you counting anything?"

 

By now you probably know that Pandas symptoms include tics and ocd. My daughters onset was pretty sudden but more over the course of a week not overnight. Her titer levels are still going up even though we have had her on azithromycin -zithromax prophylactically the last four weeks. Her tics have improved and her ocd but we are also on other meds and there is some fluctuation with her symptoms. As a point of reference her most recent levels were ASO 244 and DNase 960.

 

She is now scheduled for surgery to have her adnoids/tonsils removed. The ent thinks there may be acting as a reservoir for the strep so she has an 80% chance of significant improvement - 20% no improvement.

 

Good luck

 

 

One thing caught my attention in your first post. The counting steps forward and backward. That can be a symptom of OCD and OCD is associated with Pandas. My daughter has Pandas and she has had all the facial and vocal tics you are describing: the huh sound every few seconds; eye blink; mouth stretching; coughing and they have been so severe they have caused her extreme pain. She also has ocd without the counting - but that was the first thing the doctor asked when they suspected ocd "are you counting anything?"

 

By now you probably know that Pandas symptoms include tics and ocd. My daughters onset was pretty sudden but more over the course of a week not overnight. Her titer levels are still going up even though we have had her on azithromycin -zithromax prophylactically the last four weeks. Her tics have improved and her ocd but we are also on other meds and there is some fluctuation with her symptoms. As a point of reference her most recent levels were ASO 244 and DNase 960.

 

She is now scheduled for surgery to have her adnoids/tonsils removed. The ent thinks there may be acting as a reservoir for the strep so she has an 80% chance of significant improvement - 20% no improvement.

 

Good luck

 

Pandamon,

 

Oops! I wrote my original post at nite, so I was pretty tired. Anyways, what i mean with the "taking 5 steps forward and then 5 steps back" was his tic progression. In the first 2 mos., I saw a steady decline in tic symptoms, but in the 3 mo., everytime my son's tics decrease, it increase again in a few days.

 

Sorry for the misunderstanding.

 

Good luck on your daughter's surgery. Please keep me posted.

 

patty

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Patty,

 

I don't really know what triggers Jordan's tics - I wish I did. So far, the only thing we noticed is that stress seems to make things worse. It was ironic - he was tic-free the entire summer (while he was just in camp playing everyday), but then within 5 days of starting school again, the tics came back. When he is having tics, we do notice them more when he is sitting and concentrating, like while playing on the computer, doing homework, or watching TV. But, sometimes, he'll just have tic after tic when doing something simple like eating dinner.

 

The tics themselves has evolved as well. We never really know what to expect. The very first tic I ever remember was him sniffing. I used to tell my husband it was a problem, but he thought it was just a habit. Then the sniffing became snorting, and then he began jerking his head back and forth and side to side. It was then we really knew there was a problem. He's had other tics as well ... smelling his fingers, pursing his lips, srunching up his nose, clenching his hands in fists, etc. I think it's very common for the tics to evolve into different tics.

 

At this moment, we are practically tic free. Again, I don't know if the tics just went away on their own, or if it was the Zithromax that "cured" them again. He is still have mild tics, but I doubt they are noticeable to anyone but my husband and me (because we are CONSTANTLY watching him). But, I do lie awake at night just worrying about what the next day will bring. Everytime he does ANYTHING (makes a funny movement or sound, or burps or hiccups) my heart drops because I do not know if it is a tic or not. I just can't stand watching him go through this ... I know you know how I feel ... it's heartbreaking!

 

Hugs!

Julie

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Hi Julie,

 

Since your son seems to be photosensitive - the lights at school may be triggering some tics - since he was fine all summer - my son's teacher keeps most of the lights off - and we sit him near the natural light and with the flouresent lights that are on behind his head. This has helped him in school.

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Hi Julie,

 

Since your son seems to be photosensitive - the lights at school may be triggering some tics - since he was fine all summer - my son's teacher keeps most of the lights off - and we sit him near the natural light and with the flouresent lights that are on behind his head. This has helped him in school.

 

Thanks for your response! I never really thought about a connection with lights. I'll have to try some experimenting to see if it makes a difference. Excellent point ... thank you!

 

Oh, and I just saw your response to me above (somehow I missed it). I did forget to mention that Jordan has been on prophylactic antiobiotics. He's been taking zithromax - 1/2 pill 2 times per week. I want to talk to my neurologist about increasing that, though, since he's had a recurrence on that dosage.

 

Thanks!

Julie

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