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Diagnosed with TS


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Hi Vicki and welcome to Latitudes :)

 

I absolutely agree that MOLD is a major tic (and general health) aggravator.

 

and

 

it is very likely that the carpeting or seat fabric in your new car is causing the problem...possibly via the formaldehyde in it.

Also

the plastic and other synthetics may be "leeching" (very common) and some chemical there may be causing a problem.

 

Detox and herbal treatments etc is best done under a physicians guidance and there is a very helpful list of doctors who practice alternative medicine at the top of this board

http://www.latitudes.org/forums/index.php?...p?showtopic=565

 

My son had tremendous help by undergoing accupuncture, reflexology and biofeedback (NOT neurofeedback) while he was going thru the detox procedure.

 

We have seen my son's tourette and OCD go from very severe to mild over the 3+ years that we have been using supplements(vitamins,minerals,amino acids,herbs) and other alternative therapy.

 

there is a wealth of information in the various threads on this forum, and a really good article on tic triggers

http://latitudes.org/articles/finding_triggers.htm

 

nice to see you here and hope you will stay in touch

:)

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Hi Cheri

 

Just a quick question regarding your use of vitamins, minerals, etc as per your earlier post:

 

"We have seen my son's tourette and OCD go from very severe to mild over the 3+ years that we have been using supplements(vitamins,minerals,amino acids,herbs) and other alternative therapy."

 

I was wondering how you were able to determine the right dosage for your son? Was this on the advice of his doctor? If so, did you do specific tests to determine what supps were needed? My daughter is 11 1/2 and she is now taking GNC's Animal Parade Supplements. I've read, however, of the benefits of the B vitamins and magnesium for tics but I'm unsure of how safe it is to give her more than is in the supplement she is currently taking.

 

Thanks!

 

Sherry

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Hi Sherry

 

yes, we determined doseage under Integrative physician guidance, using Bonnie's original research plan as a foundation

 

My son had blood, hair and radiogenics testing done to determine deficiencies.

 

Bonnie's orignal plan is here

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

and

her new Bontech Supplements ingredients and doseage guidelines are on her website at

http://www.BonnieGr.com

 

A multi is good (as long as it doesnt have artificial color and flavor etc in)

but the benefits of extra supps that target TS specific deficiencies are really worthwhile.

And there are many folks who can attest to the fact that the earlier you start a supp program, the better.

 

:)

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I just spoke with my mother, a certified herbologist, and she has given me some things to try that are natural. She has a friend with Tourette's who has had good results from them. One of the treatments is aromatherapy with lavender oil. there are a couple of herbal tinctures as well. After I get them, I'll keep you posted on the results. I really hate to put such a young child on the pharmaceuticals that are used for this. If anyone else has had any luck with natural remedies, please chime in! Also, has anyone noticed a hormonal connection. My son is at the age where he is starting to increase testosterone levels. My husband said his worsened at about the same time and I think my little brother had a similar trend with his. Any thoughts?

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Hi Vicki

 

yes, just about everyone who posts here uses only natural remedies, not prescription meds, and with much success.

 

Aromatherapy, as with the lavendar oil is very relaxing, and my son has this when he has his accupuncture/reflexology.

 

Please do keep us posted as to the specific things you are trying.

 

Also, the "hormonal" years do seem to be the years when the tics are highest, at least from the anecdotal evidence.

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Hi Vicki,

just a thought, your car doesn't have any of those smelly chemical air freshener things. Some kids are sensitive to the chemicals in them. Even if it says natural smelling NEVER TRUST THE LABEL!

 

I am unable to trust any labels, even in the health food shops. The worst problem Australia has with it's foods is an additive in bread

number 282 Calcium propionate It's supposed to be responsible for giving children ADHD symptoms and as they eat it everyday unknowingly, they are usually diagnosed with illnesses they don't really have. Apparently America uses it a lot as well but Europe rarely does.

hope this helps

LOL

Ausclare

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Guest Guest_teach1

John, Sorry this is so late in getting back, but i just read your reply, and wondered,what is Body TAlk? I hate to sound so unaware, but I've never heard of it before. Thanx for any info..teach1/Patty

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Sorry teach but I wasn't online either for the past few days. To learn more about Body Talk visit this website: http://www.bodytalksystem.com/index.cfm you can also find other information on the web by just plugging in "body talk systems". It is an interesting treatment which has worked for us and for others too. Wish you luck teach.

 

John

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:)

First - I'm new here - just found the site. This has been an exhausting day preceeded by 2 difficult weeks, and the past two years of diagnoses, changes, meds - etc.... for my 10 YEAR OLD SON - - (soon to be 11).

It started with ADHD DX.... he was on various meds, and shortly after was diagnosed with a seizure disorder after a 24hour sleep deprived EEG. He went on various meds including Gabitril, Provigil, and Neurontin. It was a confusing time, I'm a single mom, I was on a new job, new school for my son (then 3rd grade) and all these diagnoses? In my opinion one of these meds caused a side effect of eye rolling -immediately off these meds, on to a neurologist- and the eye rolling continued. We went to a pediatric neurologist, had 24 hour ambulatory EEG and an MRI - and after four months of Depakote and no improvement - changed doctors. We're now going to Texas Childrens in Houston - While I love our new doctor - the diagnoses are disheartening and confusing.

 

Anyone bored yet?

 

My son: He's great! Everyone says how smart he is (even though he struggles in school - he is a strong "B" average). He will go into middle school this year - 6th grade. I worry I didn't hold him back when he was little, but Pre-K -2nd grade he was honor roll "A" - - too bright to hold back. Now he is one of the youngest in his class, he will be 11 2 days after school starts - and his classmates will mostly be 12-13. He is 6-8 inches (or more) shorter than most of his peers, therefore he is not as athletic (feeling inadequate to play basket ball with them, or can't run as fast, or not as strong). Still - he is a strong character albeit too sensative. He does do Tae Kwon Do. He likes Rap Music. He is a "little adult" - he worries about adult things, puts things together in an adult way, had a strong sense of right and wrong, confesses anytime he hears or says a bad word, or thinks a bad thought... (he has been in here 3 times tonight to tell me the video game we rented says curse words - but promises not to repeat them). He is so honest - probably too honest. He has gotten in trouble in school (in fact 1 day out of school suspension) when he got emotional over a kid bad talking a little girl he liked. He made a remark, another child "told on him"... the teacher called him to the hall and asked what he had said - - and my little honest Abe repeated verbatium.... was taken to the office and suspended for a strong threat against another child (he said "I hope you get run over by a car" - I don't think my 4'2" 10 year old san was actually going to get the keys and run the kid over - but that is a conversation for the "is zero tolerance working against our kids" web site! (o; However said it to say - - he gets emotional, does wrong... but unlike "bad kids" he is very remorseful, apoligizes immediately, and "beats himself up" so much - it is hard to punish him.

 

Current diagnoses: ADHD, Tourettes (only tic eye rolling), OCD.

Current meds: 5mg Adderal am; 40mg Prozac and 18mg Strattera in pm

Therapy - Pschotherapy every 2 weeks (also diagnosed there with fear of abdondoment)

Family History (the things that keeps me worried so while I hate the meds and don't 100% agree with the diagnoses - I'm afraid not to pay very close attention - I'm on constant watch!!)... His father is Bi-Polar, possible other mental disorders, frequent RX Drug abuse (the reason we are no long together), has seizure disorders and migraines - , fortunately lives 700 miles away, (good because he is unstable - not good because Sam misses his dad). and feels - - yes - abandon.

Most Recent problems - Sam's best friend just moved away and Sam was so emotionally upset he cried uncontrollably and worked himself into an anxiety attack. We got past the first weekend, last week was a little rough, today was as bad as the first weekend. Tears, mad, hating God - questioning why God made him so emotional, why he took his friend away, why he makes his eyes roll. He's worried that I'll die because I'm "old" (he says - no offense mom - but you're almost 50)... I am 46 - my only son - had him late in life. He asked why I didn't have him when I was 25 instead. What if I get short term memory loss like my dad and forget about him (my dad had great memory until age 90 when he broke his hip and had to be put in a home - he didn't walk after his accident and lived to be 95) All of these BIG concerns from such a small child??

 

He gets teased by kids about his eye rolling, and I hesitate to call it tourettes in fear that my son is so bright and sensative, that if he hears "Tourettes Syndrom" and knows what it is (or looks into it), he will hear about much worse tics and they might manifest (can that happen??).

 

I read many postings on this site and read somethingabout PANDA's - - not sure if my son falls into that category - but will bring that up to my doctor. In looking back to his medical history the time line was diagnosed with Strep throat around the same time of so many other diagnoses and tics etc.??

 

Recently when his eye rolling was really bothering him, I called the doctor and he asked me to have a strep culture which I thought odd - but came back negative? Maybe he was looking into that?

 

I feel like Sam and I can deal with the ADHD and muttle through OCD - - but the tics bother him, kids tease him, it makes him feel bad about himself. If I roll my eyes in frustration about anything - Sam sees that as a personal attack on his problem.

 

Too many diagnoses? And his recent depression and adult worries and concerns, and emotional worries - -

 

Like I said - I'm a single mom, both of my parents are gone, my sibs are busy world travelers... I feel I'm stuck here in Houston Texas - alone and trying my hardest to be here for my son - to make him feel better, to calm his fears, to answer his questions..... the entire time needing answers of my own.

 

Now - - if any of you still muttled through this long description of my dilemma - any advice or comments are welcome.

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Sarah,

 

Please note that not many regulars post on the weekends, so do check back in in a couple of days.

 

Could you tell me more about the EEG? Was it a strobe test, or just measuring the EEG under normal circumstances? If it was a strobe test, I ask this because flickering lights are a trigger for some of us, and I have wondered if this might show up on an EEG and be misleading. 8% of non-epileptic children have an abnormal reaction to the strobe test. If it is not the strobe test, then never mind this point.

 

http://www.john-libbey-eurotext.fr/article...29-36/index.htm

 

My son will be 11 soon and is entering middle school.

 

If you are going to see a doctor, I would recommend someone from the list at the top of this forum.

 

http://www.latitudes.org/forums/index.php?...p?showtopic=565

 

Please note that the DAN doctors deal with an neurological spectrum of disorders, from ADHD, tics, OCD, aspergers, and/or autism.

 

Most of us here don't use drugs due to the potential side effects. I am sure for example that you have read that some believe that Ritalin for ADD can cause tics. Some of this is still being studied, and I don't know at all about the meds your son is on.

 

Therapy can be helpful for OCD. I should note that some of our kids fears improved along with the when we improved underlying health issues.

 

Our solutions have included one or more of the list below (others are still being evaluated and I am sure I have forgotten something).

 

correcting yeast overgrowth,

elevated metals (such as mercury),

food elimination diet for a couple of weeks (only the most non-allergic foods are allowed, then others are added in one at a time--or IgG testing is done for food allergies).

Removing artificial flavors and colors consistantly for several weeks is another. Removing screens (TV/Computer/Big screen movies/hand held computers) for a week is another thing to try.

supplements, including Omega 3 EFA (fish oil or flaxseed oil, and primrose/borage oil)

 

Chemar found certain supplements helpful for OCD, but I don't think they mix with certain meds, so I will let her comment there.

 

Good luck and keep us posted. Again, please read the threads, more details are there and it has helped so many of us. Many of our kids had the tics and OCD or fears combination of symptoms.

 

Claire

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Hi sarahass and welcome to Latitudes :)

 

I am so glad you found us and now you are not alone :)

 

Although you are facing a lot of extra challenges as a single mom, we do understand what you are going through, and have all been thru variations of it!

 

Just from what you have said, it really sounds that your son is having his biggest problems related more to the OCD and other mood/behaviour aspects of his neurology, and it sure doesnt sound like his meds are helping much!

 

In my case, my son, now 14, manifested severe TS and OCD and more! shortly after his 10th birthday.

We had known he had ADD (no H) since 5yo

 

Anyway, we also went thru a year of rollercoaster stuff with doctors and medications and things just seemed to get worse until eventually we decided to try alternative treatments, which I have always studied and followed for other illnesses. We were just so shattered by the severity and suddeness of my son's condition that we turned to medication as we had been told it was the ONLY route to follow.

 

Since going "natural", the improvent has been truly remarkable...so be encouraged...there is always hope :)

 

A few pointers which i hope will help you too

 

a strep culture (ie the kind for strep throat) does not accurately detect PANDAs as this can be caused by strep that is of a different strain than the one that causes strp throat.

 

PLEASE do some research on Adderall., especially as your ex has BiPolar. Adderall has been implicated in the development of biPolar symptoms and other stuff.

 

Your son is on a potent mix of drugs and none of them address TS.

Prozac is under investigation for problems in kids.

 

I do hear good things on Strattera helping the ADD and most folks who report on usiong it feel it doesnt make TS worse, which some of the ADD meds do.

 

I have so much I want to tell you about but have to leave now, but PLEASE feel free to email me and we can chat more. I do have a lot of info that i think may be helpful to you

 

God Bless you and please also stay in touch here at Latitudes and try to read thru the threads on the Forums and also the VERY valuable articles on the various disorders that you can reach thru the homepage.

 

You will find this to be a truly wonderful group of people who care for each other and share their burdons and triumphs.

 

I hope you will email me

Cheri

:)

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