Vocal tics and options....

[ad_ccl]

Hi Kim,

 

We give our son probiotics with food although I have not read either way if it matters - we do it for convenience, he gets his antibiotic with breakfast and a probiotic with lunch and dinner. I have to say the change in probiotic to a different brand with much higher doses as well as more strains has made a world of difference. We started just before the holiday and that last week of school he was there every day and stayed for lunch everyday ( usually he would miss a couple of mornings a week as I would see tics starting to come and keep him off as he was seeming run down) Since being back at school he has only been late one morning and has stayed for lunch every day. He is pretty much tic free - he has a nasal sound that is very subtle and he does seem to have some congestion in his nose so I am assuming when that clears up so with the subtle tic ( if you can even call it a tic) He has been in good spirits as well - not the same emotional lability we would sometimes see. I do think yeast was the final piece of the puzzle for us - and by dealing with it more aggressively we have seen him doing very well consistently.

 

Sushine - I would highly recommend you use a probiotic while your son is on the amoxycillin - as Ronna has said you don't want to trade a strep problem for a yeast problem - which I think is in a nutshell what we did. When my son was initially on antibiotics we would see a dramatic improvement by day three on antibiotics. Look forward to your updates. Also, with PANDAS it is important to do blood work ( strep titers) not just throat swabs - the titers will indicate if you have had a recent strep infection. Regarding naturopaths etc - if you read through the posts here you will see a pattern of what supplements generally have been suggested by naturopath and many here have found helpful.

 

Regarding the screens - we also saw a great improvement with no screens - then we went to an LCD screen - the florescent lights are off in his classroom and he uses an LCD screen at computers at school and I bring in our Tv when they are watching a movie. Currently my son is not limited at all with TV and on Saturdays he watches many many hours of tv in between his hockey. At this point even when he is a little sick it does not seem to trigger tics at the tv - it did at the beginning.

 

Please feel free to ask any questions. I did a thread called New Here - PANDAS which was in a way a running log of what we were going through.

[Sunshine]

Strike two today. The doctor disagreed with all of my approaches. I spotted the post re: finding medical help, but I don't live in the US. Can I attempt the natural approach alone? This is so frustrating!

[Sunshine]

to ad_ccl

Thank you for your reply. This is my second post tonight, as I am a rookie here. I didn't know there was a page 2 that would access your reply. I appreciate your comments (and others) SO much, and it brings a smile to my face to see a response to my writing. You and the others are amazing people!

 

I am worried about developing/enhancing a yeast problem with use of antibiotics. We have seen no improvement in his tics thus far. Perhaps PANDAS is not our dragon, or perhaps continued patience is of essence. I am aware that his recent sickness could be viral, and could also cause an increase in tics. These past few days we have seen the first complex motor tics (body scruching and limbs ticcing). The doctor still maintains that it's anxiety, despite the fact that his only anxiety is separation from me! She would like to recommend a psychiatrist... any thoughts on that?

 

Here are a few questions to any one who can help:

Does 'natural flavour' on a label mean that it's ok to use?

Why does Feingold say a McDonalds cheeseburger is ok? Doesn't the cheese have colouring?

We've been following a restricted diet for almost 2 weeks, and have noticed very little change. He is a good eater, although he must metabolize food well, as he is small. We've also pulled dairy out of his diet (possible allergy). He still has little rashy bumps on his cheeks and jaw line. Is this a typical symptom of any allergy? How about shiners under his eyes? He tested positive to dust 2 1/2 years ago (pre tics). Last question: can anaesthetic cause yeast/mercury/any immune problems? He has been put under 3 times for various operations, and I wonder if there's any correlation.

 

Thank you!

[mmazz]

Hi Sunshine:

 

The way I view these tics is if they are not a genetic issue than they are caused by some sort of short wiring within the nervous system. The path I chose was not medicinal thus far but a more natural approach. Scared by the vitamin wall and with little/no knowledge of nutrition I found myself turning toward diet and food. My little one was moody, distant and had a hatred for being left behind at pre--school. His anxiety was at an all time high by 4 years old. THe interaction he had with us (his family) was minimal because he like to lose himself in TV. His complextion was pale. He was skinny and small for his age. His hair was dull and the appetitie was horrible. It consisted of cheese, milk, and pasta with junk food mixed in. By the time he was 6 our relationship was just upsetting. He was a jealous boy who did not want to participate in sports or have friends. He just wanted to watch TV with a plate of fod in front of him while the rest of the famly talked around the dinner table. WHen these tics appeared I has just blown away. With a dr. who want to place a script in my hand and no place left to turn I came here. I pulled strength from these great people and started a new life for us. First I cleaned the diet and removed the TV. With little results I turnhed to my health store keep who taught me about vitamins and finally I started to read a great little book about nutrition. With that I turned to organic veggie juice of which we all do daily as a family. Adding in acidopholus and a good multi we were able to take this child back. TOday he is 7. He is a cross country runner who came in the top 13 out of all the children in his age group in our county. He joined hockey. THe last time we forced him to join at age 5 he vomitted all over the ice because he did not want to leave the comfort of his home and TV. He now swims. His grades in school are above average. He loves his family and eats dinner at the table with us. He now eats a great diet with carefully selected goodies instead of junk. His hair is shinny and full, his complextion is great, he gained weight and grew and now is a little above the average for his age group. He laughs, giggles and expresses himself normally. And is just an all around happy boy. Does he still tic? The answer is yes. Noticable to me. Sometimes his cough/sniff tic is noticable to others but it is just apssed off as allergy. This is much better than the tensing, ticcing bending stretching facial grimmacing every few seconds that we experienced last year for a few months. But remember that curing by diet takes years and I am prepared to withstand the test of time for a good diet is key to an overall healthy lifestyle regardless of the tics.

With all that being said always keep in mind that the body is a complex thing and that it can naturally detox itself if given the right tools. Preservatives, artifical colors and injectable vaccines cannot be detoxed naturally without proper nutrition. THe body must eliminate waste at least 2 times daily otherwise it reabsorbs these toxins and creates havic on the digestive system as well as creating cells that can ultimately damage the nervous system or any other organs. This is true, just look at just how many illinesses people have today. Our bodies are more polluted than Exit 13 on the New Jersey Turnpike. The body creates new cells every 28 days. If our bodies do not have the minerals and vitamins it needs it will create sick cells which than will cause illness. Our digestive tract breaks down our food and without proper enzymes our bodies cannot absorb the vitamins and minerals. Some people will supplement enzymes while others like me will juice. I hope what I posted helps but always remember to take things slowy.

 

Be Well:

 

Marie

[Sydsmom]

Marie,

As I read your post I found myself nodding. My daughter is a totally different girl after a year of dietary changes and supplements. She is HAPPY, interacts and is NICE to her brother. She used to ignore him and if she did pay attention to him she was mean both emotionally and physically. Her grades are going up - we had a bit of a set back at the beginning of this year because of Middle School. But, I feel I have a happy normal daughter. Yes, she still tics though not as bad. A year ago she had like 5 big ones going on at the same time, now there are 2 or 3 small ones that most people probably don't notice. I think she's accepting them now and who she is. All I can say is fight for your kids and stay in the game. It's overwhelming and we still have bad days but the good days far out number the bad days. And lots of PRAYER!!!!! Not just for my daughter but myself too

[lacovcit]

 

Hi, I am new here:

 

I was recently diagnosed by a neurologist, as of January 2006, with a tic disorder, not tourettes. I have vocal tics. The only other symptoms that I have are irritability and repetitive thoughts. For 15 years I was misdiagnosed with four different psychiatric disorders, bipolar disorder, major current depression, schizo effective disorder, and atypical psychosis. I first started having vocal tics at the age of 20. I am now 36. I was on various psychiatric medications. I would like to treat this disorder naturally. The reason for this is that I had so many bad experiences with psychiatric medications, as far as side effects and withdrawal. My neurologist wants me to try keppra or topamax. If I choose to take keppra or topamax, I will have to wait for my HMO to approve payment for these medications; they are not in their formulary. Currently, I am being weaned off of klonopin 0.5 mg, which was prescribed to me by a psychiatrist when I was diagnosed bipolar disorder.

 

My diet consists of the following:

Soy milk and tofu (magnesium chloride)

Yellow soybeans and lentils

Barley and brown rice

Peanuts and almonds

Flax seeds and sunflower seeds

Olive oil and canola oil

Bananas and oranges

Collard greens and cabbage

I am going to search this forum for natural remedies. My last psychiatric diagnosis was bipolar disorder. I had began taking supplements for bipolar disorder before I was “officially" diagnosed a tic disorder. Until I learn more information about tic disorders I will continue taking the supplements I used for bipolar disorder.

My current daily supplement regiment is as follows:

Fish Oil 4000 mg

GABA Relaxer twice daily:

Niacin (as niacinamide) 200 mg

Vitamin B-6 (as pyridoxine HCI) 20 mg

Taurine (free form) 600 mg

Inositol 600 mg

Glycine (free form) 400 mg

GABA 200 mg

Probiotic Blend (L. acidophilus, L. rhamnosus, S. thermophilus and L. bulgaricus) 50 mg

B-complex plus vitamin C twice daily

Multivitamin

Melatonin 12 to 24 mg and Benadryl 25 to 50 mg for insomnia in anxiety\panic attacks do to klonopin withdrawal.

Does anyone have any suggestions or criticisms?

 

Thank you for your support.

 

 

 

 

Hi and welcome

 

vocal tics sure are the toughest ones to deal with socially arent they!

 

as you read around here you will find tons of helpful info........one thing I would highly recommend is that you avoid artificial foods, especially coloring (food dyes) and artificial sweeteners like nutrasweet(aspartame) and splenda(sucralose) as many find they intensify tics, and my own son has found them to be vocal tic triggers for him

 

I have a thread on what we did that helped him , which may give you some pointers

http://www.latitudes.org/forums/index.php?showtopic=687

 

THE SUPPLEMENT SOMETIMES HELPFUL WITH VOCAL TICS IS L-CARNITINE which is an amino acid.

 

I am sure the other folks here will have lots of helpful info to add

 

all the best

[Chemar]

hello lacovcit

 

the best way to make a post on this forum is to use the "add reply" button and N OT the "reply" or "quote" buttons

 

 

I hope you will return to make your post again.

[Jeff]

Hi Lacovcit, The one thing about your diet that jumps out at me is the Fish oil. Many people react to fish oil, including myself. I tried to take it, but found that it increased my tics.... You might try switching to Flaxseed oil instead....

Jeff

[Sunshine]

Hi Lacovcit

I am new here too. I have little advice to offer, but share in your search for answers. The one thing that jumped out at me is the dose of B6. It seems low... my son takes 50mg, and he's 5. Good luck!

 

Quick note to anyone familiar with PANDAS.

My son's tics have gradually decreased (but are still ever present) over the past week. He has been on amoxycillin (sp?) for 6 days, and tested positive for strep A. Should antibiotics clear up the tics completely if it is PANDAS? Will a blood test confirm PANDAS? Is is hereditary? Will tic symptoms increase aroung age 9/10 like regular TS?

 

Sorry for all of the questions. This seems to be the only venue for finding answers. Any response is greatly appreciated.

[lacovcit]

Hi, I am new here:

 

I was recently diagnosed by a neurologist, as of January 2006, with a tic disorder, not tourettes. I have vocal tics. The only other symptoms that I have are irritability and repetitive thoughts. For 15 years I was misdiagnosed with four different psychiatric disorders, bipolar disorder, major current depression, schizo effective disorder, and atypical psychosis. I first started having vocal tics at the age of 20. I am now 36. I was on various psychiatric medications. I would like to treat this disorder naturally. The reason for this is that I had so many bad experiences with psychiatric medications, as far as side effects and withdrawal. My neurologist wants me to try keppra or topamax. If I choose to take keppra or topamax, I will have to wait for my HMO to approve payment for these medications; they are not in their formulary. Currently, I am being weaned off of klonopin 0.5 mg, which was prescribed to me by a psychiatrist when I was diagnosed bipolar disorder.

 

My diet consists of the following:

 

Soy milk and tofu (magnesium chloride)

Yellow soybeans and lentils

Barley and brown rice

Peanuts and almonds

Flax seeds and sunflower seeds

Olive oil and canola oil

Bananas and oranges

Collard greens and cabbage

 

I am going to search this forum for natural remedies. My last psychiatric diagnosis was bipolar disorder. I had began taking supplements for bipolar disorder before I was “officially" diagnosed a tic disorder. Until I learn more information about tic disorders I will continue taking the supplements I used for bipolar disorder.

My current daily supplement regiment is as follows:

 

Fish Oil 4000 mg

 

 

GABA Relaxer twice daily:

 

Niacin (as niacinamide) 200 mg

Vitamin B-6 (as pyridoxine HCI) 20 mg

Taurine (free form) 600 mg

Inositol 600 mg

Glycine (free form) 400 mg

GABA 200 mg

 

 

 

Probiotic Blend (L. acidophilus, L. rhamnosus, S. thermophilus and L. bulgaricus) 50 mg

B-complex plus vitamin C twice daily

Multivitamin

Melatonin 12 to 24 mg and Benadryl 25 to 50 mg for insomnia in anxiety\panic attacks do to klonopin withdrawal.

 

Does anyone have any suggestions or criticisms?

 

Thank you for your support.

[ad_ccl]

Hi Sunshine,

 

I can only really give you info on our experience with PANDAS - I will also bump up my original thread when I started here - it may answer some of your questions.

We found with our first overnight onset of symptoms - they were so severe and remained until day 3 of antibiotics when they went away about 80% by day 10 they were very minimal - but a cough remained which had been there before the onset ( ultimately I am convinced this cough was due to a milk allergy as we have not seen it since removing milk from his diet - and he had that cough for 3 years) Our experience was that within a week off antibiotics tics emerged again fast and furious ( hope this does not happen for you) ultimately we went back on antibiotics and they decreased again, whenever we went off the antibiotics they came back - but eventually while on full antibiotics he was getting very up and down - PITANDS was clearly an issue for him - illness triggered tics - and now I think Yeast was a HUGE issue - caused by the antibiotics - which I think explains why over time the antibiotics seemed to stop working. I really believe the immune system is key - it took me a long time to figure this out - it should have been obvious - but I felt like his immune system was over reacting so I did not want to initially give vitamins etc - thinking it would make his immune system overreact more.

 

Regarding the blood tests - they will show if he has had a step infection - by increased strep titers - but you already know he did from the positive strep test. The strep titers are an issue for us - as they remain very high - last tested a year after the sudden onset - normal was under 65 and he was close to 800. I just wish they would go down - but we have not retested for 6 months. We decided to have our son on prophylactic antibiotics to prevent ( with hope) a strep infection. We still get symptoms with viral infections, but not at all as severe and as his immune system has improved he is tic free for longer periods of time and when he does tic they are so minimal no one would notice. We are considering going off the antibiotics this summer - he will have been on antibiotics for 2 years at that time. I am on the fence on this - there is good and back with the antibiotics for sure - we started treating the yeast more aggressively in December ( after a flare up after halloween and suggestions for members of this board it could have been the sugar) I have to say we have seen significant improvements on the new probiotics.

 

Regarding it being hereditary - I believe there is a genetic link to rheumatic fever - I have read this before - my aunt had RF. Looking back we also think my brother had PANDAS - and the good news is he is symptom free now - and has been since he was a teen - he probably had a mild case - he did some blinking for a while on and off - and it was more the attention, behaviour issues that he had. He has read info on PANDAS and sees many similarities to himself. I am hoping that my other two sons do not have to deal with all of this - I decided to do all the food allergy testing on them and found they were also allergic to many of the foods - I have tried to keep their diet as clean as possible in hopes of not taxing their immune systems.

 

I am hoping symptoms do not increase at age 9 - I think TS and PANDAS are two separate beasts - although ultimately it seems the same things help so many tic syndromes. I have not read about symptoms increasing with PANDAS at age 9.

 

Not sure if that answers your questions. Ronna has also dealt with PANDAS so her posts are good one's to look out for.

 

Please feel free to ask any questions.

[Sunshine]

to ad_ccl

 

Thank you SO MUCH for your quick reply, and for addressing all of my strange questions.

 

Thank you also for bumping up the report on PANDAS. I have so much to learn (from how to bump to how to heal my son). I had read the initial parts of the thread many times, but just realized tonight that there are 11 amazing pages of information to digest! I was "going to bed" two hours ago. I will continue to revisit the thread over the next few weeks.

 

You mentioned that Ronnas has dealt with PANDAS, and I have read many of her threads. It's hard to separate details out in my mental foggy state (overconsumption of information). Is there a way to search for threads written by Ronnas? The back issues that I read are listed by topic only, and I know pertinent information is burried, but I'm ruuning short on time and energy to search. My eyes burn from too much computer time.

 

I see myself mirrored in your early posts. I only hope to one day mirror your current posts! Our boys sound similar too. My sweetie is a loving, smart, sensitive 51/2 year old boy with strep, allergies, food sensitivities, and a compromised immune system (my humble opinion!). Like you, I'm Cdn. too.

 

Although we have seen improvement in our son, we know that we have a long way to go. It is hard to find Dr.s to support our notions re: tic triggers. I think we have found a naturopath who does vagen testing for food sensitivities. Is that the kind of testing which would be appropriate for our son?

 

Why do you give the cal/mag/zinc combo at night? How high is the dose? I am chopping my son's up, as it's way too big for him to swallow. He gets it mixed with his antibiotics and other food. Do you know anything about mixing vitamins and antibiotics?

 

Well, I must sign off and get a bit of sleep before it all starts again tomorrow. Thank you for posting, and helping me through our trials and tribulations!

 

Take care!

[ad_ccl]

Hi Sunshine,

 

Reading until the wee hours was where I was a year ago - remember to look after yourself as well as your son. Easier said than done I know!

 

You can search by posts - I think if you click on the top of the screen "search" you can type in the name and it will pull up all posts with that name - or word or whatever - I think I used to type in PANDAS to begin with. You can also click on the name which is underlined on a post - and then you have options of reading other posts by that person, or threads started - I eventually just started to make my way though every thread - tons of reading and so much went over my head - as I did not think it was relevant to my situation - but now I realize so much of it was - all the info on yeast, allergies. light triggers etc I did not think were an issue for us - I just assumed that eventually the antibiotics would work.

 

I don't know anything about Vagen testing - we did the ELISA testing - delayed food sensitivities - IGG - we had ours sent to Meridian in the States - the Naturopath sent it. We have been very lucky as our ped. is open to the testing we have done and has talked to our naturopath as well.

 

The cal/mag and zinc at night is because it is supposed to help you sleep - we are not really giving him it anymore ( I don't remember the doses - but it was from Shoppers Drug Mart - it was the smallest one I could find but it still was a bit big) , although we should as he is still up at 11pm right now - he has sooo much trouble getting to sleep. We started to limit vitamins a few months ago when he started fighting having to take so many - for the first 6 months he was taking a lot of vitamins - we are now on just B complex and multi, l-taurine and one fish oil in the morning, probiotic at lunch and dinner and a zinc before bed. He had tested high for pyroluria - deficiency in B6 and zinc - the last few night he has refused to take the zinc at night. I am mixing some liquid Cal and Mag into his juice through the day - small enough so he is not detecting it - liquid seems to be the best way to be absorbed - from what I have read. I have not read anything to indicate a concern with mixing vitamins and antibiotics.

 

Keep reading, taking notes, keeping a journal - patterns will emerge. It is hard at the beginning but it really does become easier. We all have our own puzzles to put together. One piece at a time.

[wewillbeatthis]

Dear ad_ccl and Sunshine,

 

On behalf of the many of us "watching in the wings" and hoping for some insights -- thx for your posts and good luck. Hang in there, Sunshine. We're in the same boat as you ("early in the learning") and trying to identify our dragons, too, thru one a one step at a time approach (though I must admit I was the one holding a garbage bag at 3AM and throwing out the Fruit Loops, etc. in our home a few short weeks ago when we were at rock bottom and I was just learning about the potential sources of our son's sudden increase in tics and OCD behavior!).

 

Fyi, we finally got our 20 page report back this week after taking the TRIAD blood/urine test thru Metametrix. We're meeting with our MD (homeopathic/"family wellness" focus) on Thurs to help analyze the same and (hopefully) map out a game plan. Due to other steps we've taken (or maybe due simply to blind luck!), our son has improved somewhat since our lowest point right around Christmas.

 

Wow... we are sooo tired but thankful we have the support of others. So I say: hang in there everyone!!

 

Best regards,

Wewillbeatthis

[kim]

Hi Wewillbeatthis,

 

I was wondering if you could answer a few questions for me. If you had urine through Metametrix, could you share the # of the reading for D-Arabinitol that your son showed? I'm assuming this would have been tested. On my test it was found under the yeast/fungal section. My son showed 51 for this marker. I had called Metametrix Monday to see if they had changed the testing method for yeast, as their website shows tartarate and citramalate, and the girl I spoke with said, "no" those were the old markers, that they used to use, and D-arabinitol is still what is currently tested. She said I must have found that info. on an older site of theirs.

 

I'm also wondering if your Dr. had to sign for you to have the blood drawn, or if you just ordered this test yourself, and took it to the lab, and had the blood drawn without question?

 

I have been dying to find someone else who has had the yeast testing done through Met. and to find out what kind of reading they got on the arabinitol, especially.

 

If you could share this info, it would be much appreciated.

 

Kim