New here to the board....

[Tybudsmama]

Hi, my 6 year old son is newly diagnosed with Tourettes. We actually have been dealing with it for 3 years, but we just didnt' have a name for it at the time. One thing I can agree with my neuro is that the baggage of tourettes is much worse than the tics. My son has many tics (head shaking and lip licking-his 2 biggies!), belching, squealing, spinning, walking in circles....but I think the bad part is the emotional junk. We are dealing with a lot of anxiety/adhd/up and down emotions/moodiness. I know the neuro is going to suggest a mental health eval and I am trying to avoid it. No offense to any mental health proff's on the board, but I just don't trust them. I am hoping to talk to him about some natural remedies for this stuff....what has everyone else used? We go back to the neuro on 4/25 and I would like to go in with lots of ideas! We have a good doc, he is not opposed to any natural stuff, he says "I just would hate to see you spend lots of $$$ for just a small amount of relief." The only med my son takes is CLonidine at night to help him sleep. It doesn't seem to work all the time, but most nights it does. ALso, does any one elses child suffer from leg pain? My son has lots of leg pain mostly at night, but during the day also. We homeschool our kids so we have been able to avoid meds for the tics and adhd stuff. We originally tried some meds when his tics really peaked and the meds were horrible (I basically lost my little boy!) It was horrible. So, if anyone would like to share some info with me, I would greatly appreciate it. Thanks so much!

-Lori

[Calicat]

Well, I'd say you are definitely in the right place! Welcome!

 

To answer some of your questions...

 

First, I would read through as many old posts as possible and take notes. There is so much great information buried in here, that what I am able to give you as a quick answer will not even scratch the surface of what you will find when you go digging around this board. Start with Essential Threads, if you haven't already, which is a sticky thread at the top of the forum.

 

In brief, though... some combination of the following seems to have helped many children tremendously:

 

Magnesium citrite (my fave brand: "Kids Calm"), especially at night as it calms the body and muscles and aids in sleep.

Omega 3 oil, or if not tolerated, flax seed oil.

Taurine, or carnitine (possibly the acetyl-l version).

Digestive enzymes.

Probiotics.

Natural food, taking out artificial colours, flavours, preservatives.

For some, taking out gluten and/or casein.

For some, reducing amines and oxalates... and one more, can't remember the name.

Reducing allergens in the home.

 

You can try some of these things, or you can get testing to lead you in a helpful direction. Be extra careful when mixing drugs and supplements... be sure to get professional guidance.

 

Hope this gives you a starting place.

Calicat

[CSP]

Welcome Lori,

 

So glad you found this place, lots of good info here. Have you tried the epsom salts baths yet. that might help on those nights you feel he is not getting to sleep.

 

It sounds like you have been dealing with a lot and you are not overwhelmed. Sometimes with those of us who had the tics explode we try to much to fast. Glad your homeschooling that will help with any stress he might feel, and keep tics down.

 

Good luck and read as much as you can, diet would be the first step I would clean up if you haven't started that yet. My son was on Clonidine (patch) for 1 month, after we started with the diet his body calmed down so much we were able to take him off.

 

Let us know how things are going.

C.P.

[Chemar]

Hi Lori and welcome

 

I have a link in my signature here on the natural methods of treatment that have helped my son over the 8 years since his TS dx

 

do also take a look thru our Essential Threads 101 as you are sure to get much info there

http://www.latitudes.org/forums/index.php?showtopic=2459

 

the book written by our administrator, Sheila Rogers is an excellent reference

http://www.latitudes.org/book.html

[JennyC]

I dont have Isa on any supplements or anything like that, as she gets older that will come Im sure. The thing that helped her big time though was taking her off dairy, anything with casein (the protein in the milk) she cant have. Within a week of doing that her tics were greatly reduced. She still has them but not nearly as much as she did. This may or may not work for your child, I guess it depends if he is sensitive to it or not. Also, look into the Feingold program, it has done wonders for her hyperactivity, night terrors and issues such as chewing on herself.

[lurker]

Hi, Lori,

 

Welcome. I would suggest Epsom salt baths and/or Natural Calm (magnesium citrate) and/or melatonin as alternatives to Clonidine for a bedtime aid. You may find them equally effective without the risk of Clonidine's side effects.

 

Read as much as you can as fast as you can and ask as often as you like. This place is frequented by some of the best friend/perfect strangers you will ever meet.

 

If I may ask, do you have genetic family history, or did his onset at three coincide with his vaccination schedule, or a viral or bacterial infection?

 

Don't feel bashfull about your distrust of Western medicine, it is somewhat common around here. When I asked my ped what I could do about my son's tic disorder, he told me, "start drinking." In his defense, it wasn't bad advice .

 

Regarding the "leg pain" has or is your son having a growth spurt? I do recall my son complaining about left lower leg pain in the first week of his onset of tics, which was approximately 4 days after his DTaP vaccination. LEG PAIN, ANYONE? Aside from that, various sources have tenuously connected Tourette's or tic disorders to restless leg syndrome.

 

Again, welcome,

 

Tami

[myrose]

My family is visiting us right now, its been a LONG LONG day at Disney and I can barely keep my eyes open but I just wanted to stop in quick to say that I did alot of reading over the past few months or so and I could have sworn that I read something about milk/dairy allergy and leg pain....give it a google search, if I get back on here tomorrow I will see if I can find what I am almost positive I read.... Hang in there...its devasating...but everyone here is going through the same thing and everyone works together to help everyone else's child. Please replace the clondine for melatolin!!!!!!!!

AFTER taking it they are asleep within 1/2 hour and sleep soundly till morning. Also has a ton of other benefits as well and the best part is that its NATURAL!!

[patty]

Hi Lori,

 

Welcome!

 

Just a quick few suggestions.

 

Do a food sensitivity test, IgE ( I always get confused with IgG ). Avoid food that are tested sensitive or desensitize them to raise tolerance.

 

In the meantime avoid food colorings, additives and perservatives, MSG, artficial flavoring & sweetner as these may be triggers for hyeractivity.

 

Eat organic whole food, like grains, fruits & vegetables. If not able to eat organic meat, next best thing would be Natural Beef free from hormone and antibiotic. Also, IMO, grass feed beef is better than organic beef. The best would be organic grass fed.

 

Drink plenty of purified water and excercise.

 

Limit TV, computer and computer video games.

 

Hope this gives you a starting point. Good luck!

 

Pat

[JennyC]

Just one quick note, make sure you thoroughly research whatever you decide to give your son as far as contraindications and side effects.

 

I saw someone mentioned melatonin, great stuff for sleep, Ive taken it myself. Its important to note that SOME individuals can have vivid dreams and nightmares on it so keep a look out.