tips please

[efgh]

new to this forum totally.. have the following clarifications..

 

1) my 9.5 year old son who has been asthmatic (cough variant asthma) for many years shows TS symptoms since 6 months.. for the first three months he was shaking his head pretty frequently and now that is almost gone but he has started making some vocal sounds on and off like grunts and squeaks since two months.. the pitch of the sounds become high when he watches TV or when he reads a book or when he is in the bathroom... when he plays computer he does not have it.. have u come across trasient vocal tics?? why do the doctors say that for ts diagnosis one should have vocal tics too? thanks a ton to your forum, i am in the process of eliminating artificial stuff from his food. i know he has been allergic to milk since his asthma days but if i dont give him milk, yoghurt etc how will he get his calcium?? your advice on this please. can i give herbal tea? does that not contain caffeine? I have been giving flax oil 1 tspn twice a day since 3 months since I heard its very helpful. am i right? want to start him on a good multivitamin? does floradix company have a good multivitamin ideal for TS? HAve seen Chemar and Jennifer pretty active in this forum. Would appreciate your inputs on starting a good multivitamin with no artificial colours or flavours since I am new.. I obviously DO NOT want to follow the medication route and hence am asking for suggestions. thanks in advance for your patient replies. also when i saw feingold website, i understand that one has to avoid almonds, apples, oranges, peppers, chilli powder ,etc etc.. I follow a diet which is totally natural for my son without artificial stuff.. the people in the forum who follow feingold, do u also avoid the above mentioned natural food items.. I thought almonds are good in magnesium which is a good natural source for TS. any idea if Malt and aroma vanillin which is generally found in health drinks should be avoided too? thank you again. being new and anxious, would appreciate replies to all my questions .. read that TS generally is at its peak at age 10 whereas some say it peaks during adoloscence? also read vocal tics start at age 10 ....its contradicting.. from your experience what do you people feel?

thanks in advance for your precious time.

[Chemar]

Hello efgh

 

I am on my way out to an appointment so will post more later, but I just wanted to encourage you not to feel overwhelmed by all the info you are getting!

 

TS, although a disorder that has many commonalities in those who have it, still manifests differently too, and the response to certain treatments is also as varied.

 

One thing is for sure, a good, pure multivitamin/mineral supplement benefits everyone.

 

There can often be underlying factors associated with TS such as strep (PANDAS) and pyroluria and other infections or deficiencies. When these are diagnosed and addressed, the tics often subside.

 

Remember that the Feingold diet is not specifically designed for TS, and, although many have benefitted from it, others only need to avoid the things that they are specifically sensitive to.

 

ALL artificial stuff is bad for people ingeneral, and neurological conditions in particular....so it is great that you are eliminating those.

 

As to transient tics......that is characteristic of TS....tics wax and wane and sometimes the same ones return and sometimes new ones emerge.

The reason doctors stress vocal tics is that other tic disorders are characterized by motor tics too, but combined motor and vocal usually leads to a TS diagnosis.

 

My soon had what we now know to have been tics from a very young age, but his tics only became truly evident and severe around 10, when he was diagnosed with TS. He is now 14, and still ticcing, but mildly, which we attribute to the supplements and careful dietary and environmental control.

 

We have friends whose children have had strong tics from very young ages (3-4yrs) and know others where tics havent manifested until adolescence.....so, IMHO, this too is varied. However, ten does seem to be a rather common age for manifestation.

 

Hope this sheds some light for you.

Try not to be anxious .... there is lots of room for hope!

I will check back later

Cheri

[Guest Guest_efgh]

Hi Chemar

 

Thanks a lot for your kind prompt reply. would wait for your detailed reply soon. Also suggest or give me some tips in choosing a good multivitamin/mineral supplement which i can give along with the existing flax oil. For your info my son is a vegetarian who eats eggs but not fish, meat etc..

would await your advice and also from other members of this HELPFUL forum.

[Guest Guest_efgh]

One more question.. heard tourette is generally genetic.. in our case, none of us have tics or any aother associated problem.. would be interested to know if in your cases, it runs in the family or not?

since none of us in the family have it, could it be due to the fact that the kids were not breast fed or they were prematured etc?? would be interested to know your case histories with regard to genetics/prematured birth/formula fed babies etc... to identify some common cause if any..

[Guest Guest_efgh]

Chemar, you mentioned about careful dietary control for your son. can you please tell me what kind of food you give him during the entire course of the day. i am having a tough time in choosing natural food. your tips would help me to choose the right breakfast/lunch/dinner. What is the artificial stuff that you invariably avoid?

Also you mentioned your son's tics were at its peak at age 10. did he have vocal also then and since when has his ticcing been mild? does any one else have TS in your family?

[Chemar]

Hi again

yesterday was hectic re my work so i didnt get a chance to look in here again.

 

Yes, most cases of TS are genetic, and in our case it runs in my husband's side.We did not connect the dots till our son was diagnosed and then, as we learned about TS, my husband realised that the "habits" he had been chastised for as a child, were in facts tics and OCD. It also became clear that his late father's eccentric behavior was in fact TS associated.

 

However, there is strong evidence to suggest that some cases of "TS" or TS-like disorders may just be environmentally triggered....there may be a genetic disposition , tho some even suggest that in certain cases, genetics are ruled out.

Still, there are reports of vaccinations, Strep (PANDAS) and other infections, even Yeast (Candida albicans).....remarkably in these cases, when

the infections are treated, the tics subside.

 

It is a VERY good advice therefore to have a strep culture done to see if you are dealing with PANDAS......this is not just the strep throat test, it has to be a culture that pick up the other strep viruses.

 

There are also tests that can be run for Pyroluria,(severe mineral deficiency)

which has been found in many instances to bethe underlying cause for tic-disorders

 

(If you check out the BrainTalk TS Forum, you will find a lot of discussion on Pyroluria and PANDAS....just use the "search" feature...

http://neuro-mancer.mgh.harvard.edu/cgi-bi...er=99&SUBMIT=Go

 

If you are certain that there is no family history of tics or TS then chances are you may be dealing with either a vaccination or infection or deficiency induced situation.

 

 

As to the dietary control......the first thingsto eliminate are all artificials like food coloring, sweeteners(nutrasweet-aspartame, splenda-sucralose etc etc) MSG & other artificial flavor, preservatives, and if possible the ubiquitous high fructose corn syrup that now seems to be in almost everything man-made!

 

Have you checked out Bonnie Grimaldi's website at http://BonnieGr.com

She has formulated TS specific supplements.

I dont use her products anymore as my son needs somewhat different combos because his OCD is a bigger factor than his tics, but I HIGHLY RECOMMEND Bonnie's program if you are in fact dealing with TS......her products are pure and safe.

 

If you prefer, you can also build your own program based on her original research, which is what i have done for my son

http://www.geocities.com/Area51/5207/ts_ma...bonnie_sup.html

 

I have added flaxseed/borage/evening primrose to the mix and also specific supplements to address the OCD.

 

I use predominantly Natrol and Now products as they are easily available and fit my tight budget. I also use TwinLab for the more specialized supplements.

 

I try to make all foods from scratch and so avoid the artificial stuff. Time consuming, but it reaps rewards

 

My son's tics only levelled off once we had him on the supplements (He was on prescription meds for a year with DISASTROUS results!!)

 

We have also found accupuncture and biofeedback very helpful

 

 

Let me know if I can be of any further help.....

Cheri

[Claire]

Chemar, how long did your son do biofeedback (ie how many sessions)? Does he still? Did this help mostly for the OCD symptoms or the tics or equally. I think you know we have started this.

 

Any false paths during the biofeedback? I.e. made him too sleepy or too hyper? Did your son have any attention issues before or during the biofeedback process?

 

Did you do the biofeedback at a different time from the supplement testing, to know which of the two helped with what?

 

I am tempted to start supplements now for his minor OCD symptoms, but was hesitant to mix with biofeedback--I want to know what is really making each difference/success. One article here on Latitudes by Dr. Walsh said that supplements are more effective for people with OCD tendencies vs full-blown OCD, so this was encouraging.

 

Claire

[Guest Guest_efgh]

Thanks for your informative response. would take your advice on strep culture test , pyruloria and supplements.

Are your son's ocd symptoms under control too with supplements? At what age did his ocd start (before or after ts diagnosis?) Are they the washing kind or symmetry kind of symptoms?

[Guest Guest_efgh]

Chemar,

1)Just remembered that my son recently had a severe throat infection and we checked for strep and streptococcus bacteria was negative.. does that he mean he has no strep? may be as you suggested i should do the exhaustive strep virus test. what is that test medically called?assuming his tics are due to strep, would the approach for dealing with his tics be different???

2)Reg. diet what are the food items that contain MSG ? on reading in the net , I gather that MSG is present almost in every item. your suggestions on this please.

3)and one more thing.. his vocal tics are prominent mainly when he watches TV or is in the bathroom. does it give you any clues/triggers etc?

4)read your response on "day light lamps". will try to get one for him esp. in his study room and TV room. lets hope it helps. also from all your experiences , which is better for tics - flouroscent lamps or ordinary 60 W light bulbs??

[Chemar]

Phew! Lots of questions so let me try to answer in order......

 

starting with Claire's Qs

 

We started the biofeedback in combination with accupuncture when he was still on meds and only taking a regular daily multivitamin.

 

When he went on supps we continued. The biofeedback is done by our accupuncturist who is highly qualified in all this. He started boifeedback in 2000. He did become sleepy and relaxed after the sessions, and so we usually did them late afternoon so he could come back to sleep. It was also stressed that he should drink LOTS of water while having this treatment. I should also point out that our therapist worked in conjunction with a radiogenics expert to fine tune the treatment. Radiogenics is controversial in this country, but a recognised alternative medical practise in the UK and Europe. We were astonished to see how the radiogenic diagnostics consistently confirmed blood & other routine testing!!!

 

Once everything started to stabilise, we started to reduce the sessions (primarily for finacial reasons) so that we went from weekly to bimonthly to monthly.

 

Now, he only goes for 'tune-ups" ie if he has been ill or if in a major waxing phase of either tics or OCDs. As his system seems SO much stronger now (I believe because of the supps and diet etc) he hardly ever is ill and we dont see tic or OCD flareups that are severe enough to cause concern.

 

I personally would not wait to introduce supps for OCD, Claire. Yes, it is good to know what works for what, but the purpose is to bring relief, and so a two headed approach is surely beneficial.

My son had relief from both tics and OCD symptoms from the biofeedback COMBINED with the accupuncture, BUT it really wasnt till he started on 50mg 5HTP per day that his OCD subsided enough not to be interfering with his life. The OCD was always far more bothersome and actually dangerous for him.....yes, there were obsessive rituals etc, but it was more the self-injurious compulsions (skin picking, eye poking, lip biting, tooth grinding etc etc) that needed drastic attention.

The meds he was given only made that worse...and actually made him psychotic.

As soon as he started the 5HTP, it was an immediate positive result. Now, he still mildly likes to order things etc but nothing really bothersome. He also takes 500mg each of INOSITOL & GABA per day for OCD.

 

 

efgh

 

my sons OCD started long before the tics. When he was in severe TS mode, he would have tics that became OCDs and OCDs that became tics.....and this was often disabling and sometimes very disturbing. As I explained above, the supps that were recommended to help with this have been amazing in their positive results. I should point out tho that he does take the full range of supps recommended for TS so i do believe that they all work in combination to bring the good results.

 

YES! The strep of PANDAS is frequently different strains of the virus from the one that causes strep throat, and can be undetected other than by a blood culture which identifies any and all strep in the system. Our physician recommended a wide spectrum culture and so we checked for a vast group of viruses. My son was not infected with strep and so did not fall into the PANDAS group.

 

When strep is identified, the treatment is with antibiotics and the tics and OCD symptoms immediately die down If there is also a true TS Dx then the tics dont necessarily disappear completely, but the intensity is reduced.

 

As to tics increasing with TV etc.....you have possibly read that many people find this a trigger and Claire has clearly shown this to be a MAJOR trigger for her child

 

In our experience, fluorescent light is a BIG NO-NO!!! The subtle "flicker" that it produces sets my sons tics off and i have heard it from others too.

 

As to MSG...yes, just like with the dreaded High Fructose Corn Syrup, it is added to a lot of packaged and canned food. That is why i try to cook from scratch and rather freeze tubs of homemade food in individual servings, rather than buy the yuck stuff. It is easy once you start to even make your own snacks etc with pure ingredients....and my son now loves pure fruit juice mixed with Syfo seltzer water instead of sodas......we make our own frozen juice posicles, bake thin potato slices with olive oils and Nature's Seasoning etc etc

 

I read labels very carefully and thankfully there are still some companies that dont add nasties.

 

I forgot to mention that ALLERGIES can also be major tic triggers so you could either have tests done, or note by observation if your child reacts to certain foodstuffs either with increased tics, OCDs, hyperactivity etc. You mentioned asthma before, so you already are aware of dairy etc....also check gluten, some nuts etc.

 

BTW Pyroluria is characterized by a deficiency in VitB6 & zinc, and TS people who have this show immediate tic reduction when this deficiency is supplemented.

 

I have posted before on what I give my son, but thought I would copy it here too, efgh, for your interest

The combinations that I give come close to the overall doses recommended in Bonnie's original research http://www.geocities.com/Area51/5207/ts_ma...bonnie_sup.html

and I have added some other things that she also now recommends in her new program http://www.BonnieGr.com and ones that I have determined to be good for my son from my own research and enquiries

 

I give a basic morning group of

 

1 multivitamin/mineral (the multi has all the good antioxidants etc, and is high in the B group vits, and I add a B1)

1 combo flax/borage/omega-3(fish) oil plus 1 Lecithin blend acetylcholine

1 combo cal/mag/zinc

1 taurine

2 ginko biloba(for ADD)

1 St Johns Wort (for OCD)

1 l-Carnitine

1 Royal Jelly

1 GABA (for OCD etc)

 

 

in the evening he gets

 

1 5HTP (for OCD-)

1 Inositol(for OCD-)

1 Evening Primrose Oil

1 Methionine

1 coQ10

1 GrapeSeed extract

1 Bilberry(for vision)

 

(The doseage of the supps depends on age and body weight so I have not included it here as my son is 14yo and >150lb)

 

That is the basic outline of what he gets, and of course we watch the diet VERY carefully so he eats healthy good stuff, no artificial colors, flavors or sweeteners and NO HIGH FRUCTOSE CORN SYRUP, no caffeine and mimimal sugar(we only use pure Turbinado sugar) he likes pure dark chocolate, and is allowed some of that, and i try to make most things from scratch and use honey and maple syrup for flavor.

 

It sounds overwhelming but once you get into the routine, and start reaping the benefits, it is SO worthwhile. I actually dispense the pills into Ziploc snack bags and do a week's worth at a time then label them "morning" or "evening" and so it makes it easier

 

OK gotta go......I will check in again later

Cheri

[Guest Guest_efgh]

Chemar , that was a nice long useful reply. would try out all the suggestions.

what is 5 HTP? haven't heard of it. where will i get it and what is its actual name?

what is gaba? does bonnie's vitamin regimen include 5 htp and gaba?

claire and chemar, I also noticed that my son's vocal tics are prominent whenever he reads a book? did you too find this with your children?? if so, any tips on this? any idea why it happens then?

chemar, really good to know that your son is doing well now contrary to the normal belief that puberty worsens things. Did his tics (when it was severe) interfere with his normal school routine and stuff? how did you/he cope with that ?how was he basically doing academically/socially?

my son sometimes touches certain things like walls, papers, door handles etc.. is it a tic or a compulsion? should i ignore that too like a tic and assume that it would go away ??

I appreciate your patient replies . This forum helps a lot when one needs to "vent out".

[Chemar]

5-Hydroxytryptophan (5-HTP) is an amino acid that is the intermediate step between tryptophan and the important brain chemical serotonin. It helps to raise seratonin levels. People with OCD are often deficient in seratonin

 

Here are informative links for info on 5HTP

http://community.healthgate.com/GetContent...d=/tnp/pg000141

http://www.wholehealthmd.com/refshelf/subs...525,747,00.html

http://www.doctormurray.com/B5htpFAQ.htm

 

GABA (gamma aminobutyric acid) is a non-essential amino acid found mainly in the human brain and eyes. It is considered an inhibitory neurotransmitter, which means it regulates brain and nerve cell activity by inhibiting the number of neurons firing in the brain. GABA is referred to as the "brain's natural calming agent." By inhibiting over-stimulation of the brain, GABA may help promote relaxation and ease nervous tension.

 

more info on GABA here

http://www.wholehealthmd.com/refshelf/subs...5,10027,00.html

 

Bonnie does not yet have these supplements in her program as they are primarily for depression, anxiety, OCD etc.

She does include INOSITOL (vit B8) which is also very beneficial for OCD

more on Inositol

http://community.healthgate.com/GetContent...d=/tnp/pg000671

 

When my son was in the severe phase of his TS/OCD it most certainly interfered with academics and social life. The meds we tried for 1 year made things far worse.

 

He has been med-free and on the supps for 2 years now, and things are great.

Yes, he still has tics, but they are mild. his OCD/depresion/anxiety/phobias are almost non-existant and even the ADD and Sensory Integration Dysfunction is MUCH improved (I think this is thanks in part to the combo of Flaxseed & Borage oil)

 

Touching things repetitively is often OCD related, but some people also have touching tics.

 

We have come to understand that TS & OCD frequently overlap in such a way as to become intertwined, with tics becoming OCDs and OCDs becoming tics. That certainly has been my son's experience.

 

My son tics a lot less when he is very focussed on something and after excercise.

 

Hope this helps

 

Back again later!

[Claire]

Chemar,

 

Thanks a million. Maybe we need a dedicated thread on OCD/Tic supplements to keep you from reposting?

 

I still have this issue of my 10 year old not swallowing pills (his dad still can't to this day unless he is really forced to do so). I called Whole Foods and they say that they have liquid 5HTP and St. John's Wort in tincture form.

 

By the way, I saw that you mentioned lip biting in your son's past. I don't know if you read that when my son watched the movie 2 nights ago it immediately started a lip biting tic (or compulsion?) which hasn't completely run its course yet--I know it will though

 

I agree re exercise helping a ton with my son, and this is another reason I encourage exercise over computer. That expression about climbing walls applies. Weird, I just read (bummer, I lost the link) that exercise helps in the near term, but it depletes the source of whatever it is that it releases, so that over time more exercise is required for the same effect, or they go to higher risk thrills to get the same self-medication. I just can't believe this though, and it won't change my encouraging him to exercise.

 

Re the tics vs OCD compulsions being intertwined--I have noticed the same thing. And for my son also the OCD-type compulsions/fears are more problematic for both of us right now--since they didn't completely disappear with this recent bout of strep as they did in the past. So this is a new quest for me. I still remember the Dr. Walsh article that said OCD tendencies are easier to treat with supplements than full-blown OCD, so I am encouraged. OCD symptoms are more potentially 'personality' changing vs a few tics. And they require more constant decision making as a parent as to what to make allowance for and what not to. With fears, I ALWAYS make allowances. Once I didn't address them (only he didn't tell me about them so I didn't know) and they really got out of hand. Catching them immediately makes them manageable. His neurotherapist is a psychologist and is aware of this.

 

I will do vitamins in parallel. As for the accupuncture, I can see the potential benefit. My son's neurotherapist tried 'though field therapy' where he tapped on the same meridians that I believe accupuncturist target, and it seemed to relax my son a bit, but it only seemed like a temporary effect and by the 4th session it had no impact. He charges a ton for that ($300+/hr), and we just can't justify the expense for something so experimental.

 

Thanks again for all your help, Cheri!

 

Claire

[Chemar]

Claire

Excercise stimulates ENDORPHINS which are natural opiates in the brain and so bring about a tremendous sence of well-being.

 

Some kids self-injure to release endorphins to get that happy "rush"!

That IS why excercise is so good.

 

D-Phenylalanine(NOT L-) stimulates endorphin production, but the phenylalanines are not good for tics so.......

stick with the excercise....and as he gets older, real work outs help (my son uses the equipment at the YMCA)

 

 

YIKES!! Your neurotherapist is somewhat excessive in cost.

Our guy (highly qualified, also a lecturer at the local institute for alternative medicine, and guest speaker abroad at seminars etc) only charges $95 per hour and he does the biofeedback simultaneously with accupuncture and foot reflexology!!

 

BTW, have you heard about the method of swallowing pills by taking the water or whatever to get them down thru a straw. Highly recommended.

[Guest Guest_efgh]

hi,

 

Can you give me examples of tics becoming compulsions. I am not so clear on this..

any specific suggestions for vocal tics.. my son's vocal tics though infrequent are of variety including throat clearing, sniffing, mild murmurring, humming, saying "mmm", "uh", grunting, squeaks etc.. they occur only in some rare occasions. scared if the frequency would increase. all are rare but i am tooooooooo worried. can i still have some hope that all this may go off. i think i should slowly start assuming that its TS and not transient tics though his tics started off only 6 months ago. motor tics are ok as of now. he is around 9.5 now and I am too anxious. heard zinc is good for vocal tics and so started on zinc gluconate 15 mg till the time i start the multivitamin.

Chemar, reg multivitamin/mineral supplement , today i found a good (natural) one. Would write the ingredients to you in a couple of hours from now and you can give me your inputs on that so that i can buy the same and start him on that at the earliest.

what are the vocal tics that your children had and what generally is the waxing/waning period?I know it varies but still..

heard kids with TS have a very high IQ ... was it true in your son's case? also heard kids with TS have some sleep problems (that is they have a tough time getting into the sleep mode in the night). Was it true in your son's case too?

would check back again soon.

when your son had severe tics could he manage in the normal school system itself? did you have to inform the school authorities on this? more inputs on this would be useful.

thanks a million for your patient replies.

bye and take care