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I'm fifteen & have had TS & OCD for about eight years. Me & my Dad both have it. My Dad recently underwent a heart transplant & is on heart medication that heightens his OCD symptoms. Whenever we go on walks he has to perform certain rituals that include walking on other people's property or going up to their doors. So far, no one has noticed but sooner or later someone's going to & I'm wondering how I can explain OCD to them in a way they will understand because I'm not sure that my Dad can as he is not entirely familiar with it & may have a hard time explaining it, especially under all of his medication. Any advice? ;)

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hi jujubean and welcome ;)

 

that is a tough one !

 

perhaps it would be a good idea for your Dad to carry a note with him, preferably signed by his doctor, explaining his OCD and the fact that his current medication makes it more intense. That way, should an incident arise, the note can be produced for verification so that no one gets upset by his actions.

 

there are some good websites about OCD that can give you the basics so you can help your dad to understand it too.

this is the one from the NIMH

http://www.nimh.nih.gov/publicat/ocd.cfm#ocd1

 

There is also a very active OCD forum at BrainTalk

http://neuro-mancer.mgh.harvard.edu/cgi-bi...er=68&SUBMIT=Go

 

BTW, there is a really great website for TSers that has a good focus for teens

it is called Life's a Twitch, and Dr Dunc has TS himself and is a really nice guy who emails you back if you contact him. He has good info on OCD too

http://www.lifesatwitch.com

(I just checked and it looks like the site is down, but do keep trying as it is a special place)

 

I am so glad you have found Latitudes, as it is a really great place to share info and experiences and with many caring people.

Please stay in touch with us. I hope your dad makes a speedy recovery. He is blessed to have such a caring child to look out for him.

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Guest Guest_efgh

Hi

 

Good to know that you are coping well with your TS symptoms.

 

What are your motor and vocal tics?

How does it affect you in your academic/day to day school/social life?

What are your OCD symptoms?

Do you take any supplements?

Since TS in general wanes off by around age 15 or so, do you see any remission now?

At what age were your tic symptoms maximum?

 

Thanks for your replies.

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I have noticed that my tics aren't nearly as bad in comparision to when I was younger, but my OCD has done just the opposite. My main tic is cracking all of the joints in my body & when I'm at home I have throat clearing tics & I have to make a purring sound. My OCD symptoms- well there are too many to name but probably the most notable ones are: When I write, i can't put certain words under other words & I can't write the word '&' (I can't type it either so I use this >&) etc. It takes me a long time to write because I constantly have to erase & rewrite things, & even when I do, my handwriting is pretty atrocious. If I see the word '&' or the word 'the' or the word 'was' while I'm reading, I have to throw the book up into the air & catch it & then re-read the page so that I can skip over those words. I also have to touch things certain numbers of times & I have to turn lights on & off with a single finger without letting any other part of me come into the room. Sometimes I can't finish my sentences because all of the sudden I won't be able to say a certain word. These things can be very time consuming.

 

I get irrated pretty easily because when I get stressed out it just sort of feels overwhelming coping not only with the constant thoughts & obsessions in my mind, but with everything else. I have a really short temper because of it. For example; When I can't find something my mind becomes obsessed & I CANNOT do anything else until I find that thing. When I can't find it I get really upset & frustrated & i cry alot & yell which I'm sure annoys my family, but I know that they understand. The only other problem i have with it is that sometimes when i take tests, I can't read the questions because I know that I'm on a time limit so it's hard for my mind to think about anything else. Luckily, my teachers allow accomidations that I've requested. When people ask me about these things, I just explain TS & OCD to them & they just accept that.

 

As for medication, one of my 'obsessions' are that i think that it might poison me or that it will change me or harm me in some way (i usually can't even take common headache medicine) so it's hard for me to even try it. I'm hoping that I will get over this at some point. Woah I've just realized how much I've typed! It's just so good to vent all of this because i keep most of these things to myself- I feel like I can really open up in these forums because these people are going through alot of the same things I am! What about you? Do you have any tics or symptoms of OCD? Are you on medication!? :P

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jujubean, what you have described sounds so much like things used to be for my son, who is now 14.

He had very sever tics and OCD when he was 10, and he tried a bunch of medications and they really DID make things MUCH WORSE and brought a whole bunch of very nasty side effects too. So after a year he came off the meds, and immediately started to feel like himself again......not the psychotic zombie that he was becoming on those drugs!

 

Then we started on the natural types of treatments that you will hear about here at Latitudes, especially vitamins, minerals and some herbal supplements and things just got soooooooo much better.

 

You will hear me often talk about 5HTP....for my son this has been a life changing supplement..he takes 50mg of the Natrol brand which I buy at WalMart in the vitamin section....since he started taking it, his OCD is almost totally gone and doesnt interfere with his life anymore (before it totally ruled him and he HATED it)

He takes it at night cos it helps him sleep too. It increases seratonin in the brain and that is what is lacking for many people with OCD. It basically does the same thing that themeds are supposed to, but because it works in a natural way, it doesnt bring all the nasty side effects. There are some people who are react differently to it tho, like my husband, who gets too wired from it, so he prefers to take St John's Wort. we are greatful to have a doctor who prefers these natural things to the meds and so can guide us with all this.

 

My son also takes a lot of other healthy vitamins and stuff and that has helped his tics go from severe to mild.

he also tries to watch what he eats and drinks, cos he has found that artificial stuff tends to set off his tics and OCD

 

I am so glad you can vent here......it's really important to be able to talk to people who understand and know what you are going thru...it lightens the load :P

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Thankyou very much for your advice! Although I put up with TS & OCD, It's not something that I prefer living with. I can barely imagine what everything would be like without it & I've never been able to try. I'm going to talk to my parents about some of the natural remedies that you suggested. it sounds like a much better alternative to meds & I'd be alot more comfortable trying them! :P

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jujubean,

 

I consider your fear of medicines to be an intelligent choice, not an obsession.

 

The people on this board all typically shy away from medicine. Either they have heard negative experiences, or have had them. Folks here are seeking natural ways to reduce symptoms.

 

Chemar's 14 year old had remarkable success with those supplements. Each person is a little different, and it would likely take you some trial and error to see which ones worked for you. Unlike medicines, they aren't dangerous (of course you must take doses appropriate for your weight.)

 

Many here have children with tics and OCD symptoms, even if not clinically 'OCD', and some have gone through a series of diagnostic tests for other health issues. There are DAN doctors who do this--without medicines--if you want professional guidance through the process. It would be a challenge for a 15 year old to navigate on their own.

 

However the supplements might give you some early success and hope.

 

Claire

 

by the way, I use melatonin for my son also. only 1/3 mg a night.

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Thankyou for your response I'm glad to hear that my fear of meds isn't an entirely bad thing!

I wasn't completely aware of how great a range of effects different medications have on different people. I heard somewhere that it sometimes takes years to find just the right one. i would prefer to take natural supplements though, meds kindof scare me as I addressed earlier^ I've already talked to my mom about it & we're going to look into it :P

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Hi juju,

 

If you are going to do your own research, then Chemar's lists here on the site, supplemented by your own research are a great start.

 

If your parents want to do this under a doctor's direction (vs your own research), please note that most doctor's are unaware of the value of supplements!! (Though Chemar says some are starting to see 5HTP).

 

Here is a list of doctors who use natural methods to help a number of neurological symptoms, from tics to OCD to autism. They can run tests on you (urine stool, hair, maybe blood) and determine health issues that may contribute to OCD symptoms and tics. Then recommend supplements.

 

www.autism.com/ari.

Click on DAN on the left, then click on the list of doctors in your area.

 

Please don't be misled by the word 'autism' in the title--that was the starting point, but the applications cross multiple disorders. My son only gets tics from computers and yet one of these doctors ran tests on him and found imbalances that he is correcting with supplements.

 

 

Claire

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I'm so glad that you gave me that tip about the website! In the past few days everything about TS & OCD has just opened up- there is alot that I didn't know about. I'm curious about your son's tics- i didn't know that certain things could trigger them, like computers for instance- now that I think about it though, certain things trigger my tics too. Thanks again! :P

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Chemar,

 

I have read a lot about Duncan McKinley lately and he sounds like a fascinating doctor. I noticed from your post that your son has perhaps emailed him. I am curious if you know whether if he supports the natural supplement regime or has tried any of that himself?

 

I have never been in touch with any Tourettes Associations in the area and he lives not too far from us. Any medical doctor that I have visited has not supported natural supplements at all and I even got an extremely negative opinion about natural supplements from one psychiatrist that we visited early on (basically that I was wasting my money). I have wondered how the various Tourettes Associations feel about natural supplements and I know Dr. Dunc is quite involved in the one in our area.

 

Also, I noticed your reply to a new person seeking advice on another thread (as well as Claire) and I praise you both for all your knowledge and helpful advice to others. It has helped me tremendously in the past month.

 

Heather

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:P thanks for the kind words Heather.

 

I have generally found the TSA to be somewhat more med orientated than alternative, but, a lot of their recent funded research is at last moving into less conventional areas. AND, it was actually at a TSA meeting that I first heard about supplements, and was given a copy of Latitudes magazine!!

 

We emailed dr Dunc as he has some very interesting input with regard to the problems caused when people try to suppress their tics and how this tends to intensify OCD and other symptoms like rages, frustration etc etc....certainly something my son has also noticed.

I know folk on BrainTalk who have been to his seminars and speak very highly of him. He seems to have a special bond with younger people, and has a forum for them on his site ( http://www.lifesatwitch.com ) called the Haven

 

Many people maintain close ties with the TSA primarily for the support group meetings etc. Some areas have groups that are more active than others.

I certainly found that there was a very open-minded attitude and freedom to share experiences and information. They dont have many meetings in our area, tho i did see a brochure recently for a family camp out weekend.

 

I really do find the TSA website ( http://www.tsa-usa.org/ ) vey good and I also get the newsletter.

 

The literature that they provide for giving to schools is also excellent!

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