What should we do first?

[Guest danandmaureen]

Our 6 year old son has had motor tics since he was 4. We went to a Neurologist, who explained it was common among boys, and to monitor it closely. If it got very bad, he said to contact him. Well, they have worsened, or gotten more frequent and complex. In the past 2 years, Dylan has gone from a simple "cough" sound to a group of 4 different tics in any combination, including lifting his arms into the air, rolling his eyes, repeatedly opening his mouth very wide, coughing, blinking, etc. We have an appointment with the Neurologist, who mentioned he wants to start Dylan on Tenex. We are OK with that move, as from what we've read Tenex is very mild.

We're very saddened by the excessiveness of Dylan's tics, although he is a fantastic student and has a bright personality. My wife and I have ordered all of the Latitudes back issues to help us determine what else we can do for our son. In the meantime, we have read a lot of info about all of the methods that are discussed here, but to be honest, we don't know really where to start. We did make an appointment for this Friday for Dylan to get a RAST test, as well as others like lead screening, etc. We want to possibly change his diet, but shouldn't we wait until the RAST tests come back to do that? Should we cut out food coloring or preservatives in the meantime? Do we cut them out for a certain length of time? Do we setup an appointment with a Pediatric nutritionist?

We are bewildered at the amount of triggers that are discussed here. We have them all in our house and in Dylan's diet; mold, dust, TV, dairy, excitement, preservatives, etc., but we don't know what we are supposed to do. I mean, do we get an environmental team to come to the house and eliminate the mold in the basement, then observe Dylan? Do we eliminate dairy, then observe? Do we do them one by one until we find the trigger? Do we do them in groups? We have observed him and find that he wakes up with his tics, and we don't see anytime where they worsen due to environmental issues, other than when he gets excited about telling us a story about an event in his day.

Maybe some of our questions will be answered when we receive our package of back issues, but if any of you can help us out, we would greatly appreciate it. We're trying to keep a bright outlook on this, but my wife and I are sad for our boy and want to do everything we can to help him.

Thank you.

[Mustang Carole]

Hi,

My best advise is for you to take a deep breath and relax. This is life long disability that is just a part of your child's whole self. Is he different yes, but is he also very unique ...YES. He will have a compensated gift inside there that will pop up as he matures. He will surprise you!

I have 2 with TS and # 1 drove us NUTS, now he is going for his MBA. Number #2 is another unique story buried here in the archives under autism and TS.

Do one thing at a time so you can figure out exactely what you emilinated this week and he improves the following week. Read all that you can. Diet elimination for sensitivity is probably a good place to start. Make sure child gets plenty of rest, lots of love ane support at home and school, keep the self esteme strong. Warn new coachs, new teachers, etc about the tics..so they do not make unknowingly unkind remarks in front of classmates. Find a holistic docter that is willing to help you do the labs to find out what is going on and willing to help with vit. supps. The neurologists will order meds like candy. BEWARE that each drug has side effects that can be worse than the tics themselves. My son walks around with his eyes closed..called blephorspasms.. from Haldol...will he get better, hope so.....????

Read all you can in the archives and feel free to Email anytime. Hope we can all help each other.

REMEMBER YOU ARE NOT ALONE !!!!!!!

 

Happier trails for you,,

Mustang Carole

[Guest christie]

Hi - I'm a woman, 45, and I've been through everything you've discussed that your son is dealing with.

I have some thoughts about what to do first as I've had to learn by making mistakes, and recovering

from all of it -- including my tics being really, really reduced, and that's a miracle given my age and how

long I have had the assault on my system.

 

1. Latitudes back issues will be your first best source - read every one.

2. If you are comfortable, hold back on any meds at this time, especially since you are just finding all

this out. I was on meds for 10 years and was put on them at age 24. Looking back I wish I had never

gone on them. I have had to work very hard at recovering from the drugs, much less dealing with tics.

3. I don't believe this is irreversible. I know of kids who did not go into full blown TS - and have

recovered by finding the source of the problem. Since you are finding this out early his chances are good

that he can recover from them and not advance any more.

4. From what you indicated below, mold is critical here. Not just for your son, but everyone in the house.

When trying to get your hands around everything start with the most toxic things first. Mold can be

very toxic, espcially to those of us with sensitive nervous systems.

5. Food is important. I have found that the food plan that works best for me is the SCD Diet. This is

a food program that actually heals the digestive system of autistic kids. Plus those with other digestive

problems - from Crohn's disease to diverticulitis. I was born with digestive problems and my tics did not

appear until I had two traumas as a child - one dental and one emotional.

6. Build up his immune system - many kids start to get lots of infections, especially Strep Throat. I had

Strep many times starting from about age 6.

7. Safe bedrooms - in my research I have found that where we sleep is critical to our healing. Especially

when dealing with the nervous system. As we sleep our systems completely reboot. If you can put good

air filters in his room, organic sheets and mattress, no things to catch dust (carpets, rugs), and don't clean

that room with any chemicals, his little body will have a great chance to heal while he sleeps. There are

covers for beds to keep out dust mites, all kinds of stuff to help make his room healing and friendly.

 

This is a good start, and I would be happy to tell you my story any time you like. And to help you in

any way I can. There are good doctors to work with around the country, but it's important that you

select the right ones as early as possible.

 

Best regards,

Christie Dames

techtalk1@earthlink.net

[Guest Robin O]

Hi there, I am so glad you found this site. It has been a huge help for me and my son.

 

My son is 8 years old. He started having Tics when he was 6. He started out humming and then clearing his throat. He then started neck stretching. He would touch his ear to his shoulder(right and left) he would do this all day long. It is heart breaking!!

 

Me and my husband were not aware of "alternative treatements for TS" when my son got the official diag. of TS we were desparate for something to help his tics go away. The kids at school were not teasing him but asking alot of questions that my son could not answer. We put him on Clonodine for 3months. He started out on a very mild dose which was increased every 3 weeks for 2 months. We never saw any improvement at all and took him off the meds.

 

When i finally found this site my son was going through a waning period. His tics had nearly stopped and did not resurface for 5 months. At that time we started him on Bonnie G's vitamin plan.We also have eliminated alot of junk from his diet. We basically follow the Feingold Diet but we have cut out alot more sugar then they recommend.

 

Right now my son is doing pretty good. He still has some tics. He still hums very low when he eats and he was having heavy eye blinking up until 5 days ago. We have tried different supplement for that and they seemed to have helped. He has very very minor neck stretching every now and again. The back issues of Lattitudes are very very helpful. But you can read too much!! When i got my issues i had to force myself to stop reading for a few days. It can get very overwhelming. I know right now you just want this to all go away. You just want your son "back". People would say to me "it could be worse" and I would just hate that. You feel like your living in a bad dream and want to wake up and have everthing the way it was before TICS!!

Keep us posted on the Nuro visit. Your son will be in my prayers. Robin

[Guest danandmaureen]

My wife and I wanted to thank all of you for your replies. We appreciate your wisdom, kindness, compassion, and experiences. The realization that this is a lifelong part of our son is upon us now and is overwhelming. We are a lot calmer after reading your posts and after seeing his ped. for the RAST test. We await our back issues of Latitudes and will absorb them. We will let all of you know as things progress. Again, I can't tell you how much we appreciate the replies. You have given us a sense of calm, which is just what we needed.

 

Over the weekend, Dylan was a little under the weather with a cold. His tics subsided substantially. When he got back to feeling well, they started back up in full force. When he is himself he is VERY full of energy and is almost always very animated and excited. Maureen and I were trying to figure out how they subsided when he wasn't feeling well. I guess if his energy levels are low he will tic less...

 

We have a lot to learn, but thank you again for helping us not feel panicked.

 

-Dan and Maureen

[Guest Jeff]

Hi Dan and Maureen, Sorry to hear about what's going on with your son. I'll share my experience in hopes that it will help your family. I have had tics all my life. My two daughters started to tic when they were ages 5-7. At first it broke my heart to know that they would have to endure these tics all their lives. Well, one thing led to another, and we stumbled upon the Feingold Diet. Perhaps you've heard of it - the diet eliminates artificial colors and flavors and the preservatives BHT, BHA, and TBHQ. Following the diet can help children with myriad behavioral issues, like ADD, ADHD, etc. We have found it to be incredibly effective at controlling the tics. Since starting the FG diet 4 years ago, tics have become a non-issue - we hardly ever see them. And we've never had to use any medications. For us, the effects were noticeable within a couple of weeks. For others, it may take up to 6 weeks to see the effects. In fact, many go through a period of "de-tox" where the symptoms appear to be worse than before, but once the system is cleaned out, families claim to finally have their sweet children back!

Following the diet can be difficult, and overwhelming, especially at first. But once you establish a new shopping/grocery list, it becomes pretty routine. Difficulties always arise around the holidays, birthday parties, etc, when all the candies and cakes are available, but you find ways to work around them. To give you a basic idea of what we eat or don't eat: the worst culprits are things like Twizzler's, M&M's, gummy bears - any of that stuff that is loaded with colors, including Trix, Lucky Charms, Kool-Aid, etc. When we want candy, I go to the local "Natural" candy store and load up. We eat a lot of basics, like meat, potatoes, rice, milk, eggs, white cheeses, and some organic products. We eat Crispix cereal, some Barbara's brands, some organic cereals, Breyer's ice creams, real butter, potato chips, Smart Puffs, certain brands of peanut butter, etc. We do not eat processed foods, like Lunchables.

There is a web-site where you can find more info about Feingold (feingold.org). Membership costs about $75 for the first year, $48 for subsequent years, and includes an informative manual, a new food guide every year, and regular newsletters with updates. It also gives you access to the members bulletin board which is a very active and helpful forum. The food guide is the most important element. The organization does extensive research on food products, listing the "acceptable" ones in the guide. We depend highly on this guide and the research in choosing our products and doing our shopping.

Start reading labels - if you see things like Red #40, Yellow #5 (any of those colors), BHA, BHT, TBHQ, "artifical colors / artificial flavors", vanillin (an artificial flavor), then consider eliminating them from your son's diet. You might be very surprised at the results. Keep a daily food diary - record what he has eaten, and his level of tic'ing. See if you see any patterns. Eliminate those things from your own diets too, so he doesn't feel alone.

Certainly other folks have had success using other alternative methods, like supplements, certain therapies, etc. And many are having success with elimination of food additives. I hope you'll give this a try and I hope for the best for you and your son. If you have ANY questions, don't hesitate to ask.

Sincerely, Jeff

[Guest Jennifer]

Dear Dan and Maureen,

 

We know exactly what you are going through, but don't think for a minute that this is a lifelong disability. To make a long story short our now eight year old son started with minor tics when he was 3 yrs. old. They took a turn for the worse, however, after his DT@P booster shot. The latest study published in the Pediatrics Journal of November 03 admits that the incidence in tics among a study group of children seemed to be higher in fully immunized children. Immunizations and heavy metals can disrupt many systems of the body. We put our child on a strictly organic diet switched to organic household cleaners as well as a vitamin and mineral repletion program and put him on a natural detoxification protocol. It has been over a year that we've been working on this. Throughout the year he definatley improved, but for our son the key was fatty acid therapy. Whithin two weeks of a special combination of essential fatty acids his tics completely stopped. He has been tic free for 2 1/2 months now. The first time since he was 3. I never thought that anything like this would be possible, we would have been thrilled to have even "minor" tics tics to deal with.

 

Good luck to the both of you. There are many successful therapies out there. Don't get discouraged, the resuts are well worth the effort.

 

Jennifer

[Chemar]

Dear Dan & Maureen

Just to let you know that I truly feel for what you are going thru at this time!

I have been there myself, and just want to encourage you that there is much reason for hope!

 

Just as the other posters here have indicated...there are many ways to improve life with TS.

 

My son is nearly 14 now, and has shown a remarkable improvement over the last 2 years where he has been on the supplements recommended for TS.

 

He was on meds for a year, but they really did not help, and in fact made things much worse and brought many nasty side effects.

 

My best advice to you is to proceed very cautiously in the pharmaceutical area. There is such good feedback on success with proper diet & supplementation, allergen avoidance, environmental optimization, biofeedback, accupuncture and so much more.

 

Knowledge truly is vital in living with TS and so try to do as much research as you can. It can sometimes seem overwhelming but just take it one day at a time and dont stress out! There are MANY triggers to tics, and as you identify them, just gradually try to eliminate...but you cant do everything all the time....!

It gets easier as the understanding and wisdom grow, and you will gradually make progress.

 

And do stay in touch here for great support and shared experience.

I would also like to recommend the BrainTalk forum as a really great support group where you will learn a lot from other people's experience.

 

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

 

All the best to you.......your child is already on a positive track because he has such caring parents

[Claire]

Dear Dan and Maureen,

 

My own advice is that are many triggers to the tics, and it is absolutely worth spending time to track them down. My own son went from no tics to some tics to multiple tics in a short period, and I found out that eliminating computer/video game/TV for a week completely eliminated all the tics. I know I am thus biased, but you might try that with you son for a week. (It took that long for them to clear up)

 

For others here it is foods or some combination. My son never has caffeine or straight chocolate--what a stimulant!

 

You mentioned he was better when he had a cold--think hard on what was different that week? Was he getting more rest and/or downtime? That is important for many. What was different--somehow, I doubt it was the cold itself. Stresses induce the tics--whether from food allergies, chemicals, flicker...

 

Finally, strep throat is something to watch for for sudden onset of tics (and OCD). The NIH has studies on these. Watch out for sore throats, especially if a strep notice is going around the school.

 

There is way too data much to encapsulate--you just have to load up with knowledge, then watch your son and do some trial and error. Thank goodness for the internet. Lots of links here and via google. Write down those key words!

 

With many here, I see the drugs as a last resort--I am not aware of any time pressure to start them, other than impatience for results. How can you possibly assess natural ways to avoid the tics while he is medicated? He has all the time in the world to do drugs later if all else fails. It has been over 2 years since my son first had tics and he is tic free with no drugs. Also, we are going to try neurotherapy (biofeedback) to train his brain to find the calm zone, since avoiding computer/TV is not easy. http://www.brianothmerfoundation.org/emerg...ingfrontier.htm

 

Good luck.

Claire

[Claire]

Jennifer,

 

What fatty acids supplement do you give your child? What detoxification protocol did you use--do you have a link or book name?

 

Thanks,

Claire

[dan_and_maureen]

Hi everyone,

 

Dylan's RAST test and all other screenings came back at "normal" levels. My wife and I have decided to try the Feingold diet; we have read here and elsewhere of it's successes. We have been keeping a rough food diary (how detailed do you make it?), but we haven't been able to see any triggers except for Hi-C that had food coloring and M&Ms. He was ticcing pretty badly after those items. Since then, we have eliminated food dye from his diet. We don't expect immediate results, and in fact some of you mentioned a period of "detox" where the tics get worse; can you elaborate?

 

Today, Dylan's tics are really bad; full body jerking, arms raising every 3-4 seconds. I was doing some arts and crafts with him and he couldn't use scissors or a crayon. My wife and I were in tears after he went to bed.

 

Our ped. is aggressively trying to get us an appointment with our neurologist. Tonight Maureen and I were asking ourselves the question, "what's the real emergency?" We felt very anxious for Dylan tonight, but what is the neurologist going to tell us? We already know he wants to put Dylan on Tenex (please, anyone with Tenex experience share your info), but other than that, why are we so adamant in seeing the neurologist? I mean, we already know that the only conventional ways to treat it are meds, and from my conversation with the neuro a few weeks agao, he gave no indication of gravitating toward any unconventional or experimental treatments.

 

Maureen and I have sketched out a direction for treatment. It still seems strange to sort of be "self prescribing" a "home remedy" for him without leadership from a physician. Do any of you have any experience with a good doctor or practice who can assist in mapping out a plan for you or your kids? We have fortunately been in touch with Sheila Rogers and she suggested searching for an affiliate from aaem.com. Maybe this is the type of physician(s) we are seeking.

 

-We have all back issues of Latitudes and are reading what we can.

-We may consult with a practice in our area that specializes in Environmental medicine.

-We have ordered the materials and are going to try the Feingold diet first.

-This weekend, we're cleaning his room and putting our HEPA air cleaner in there.

 

Another question we had for all of you was; how long should we wait before our next move? We are considering mold removal-we have a lot in the basement, also possibly in wallboard or on wood. (The house is a 150 year old rowhome in the city) I don't want to call in the Cavalry until we've seen the results of the diet change, but still am unsure of how long to wait.

 

Thank you all so much. Again, we appreciate the openness and caring you have all shown in your posts.

 

Dan and Maureen

[Chemar]

Hi again

 

It is never too soon to get rid of environmental allergens like mold!

 

Even without a TS factor.....they are big time bad for everyones health!

 

Dustmite is another meanie....hard to live in a dustfree home, but every little bit helps lots

[Claire]

Chemar,

 

How does one get rid of molds--besides no potted plants in the house? As for dust, our whole family has allergies, and I have gotten those nailed down. Hardwood floors, air filters, and washing the entire bedding frequently. Also, we got a 'Roomba' automatic vacuum, which gets under the beds better and allows me to vacuum more often.

 

Claire

[Guest Jeff]

Hi Dan and Maureen, With respect to the mold and mildew, I agree that you need to do something about that no matter what!

With respect to the "detox" period and Feingold, some FG'ers have had a detox period of several weeks, during which their symptoms could be WORSE. But once they got through that, it was like night and day. So, stick with it for at least several weeks, even if you don't see improvement at first. When we kept our daily diaries, we recorded what they ate at breakfast, any snacks, lunch, any snacks, dinner, dessert, etc. - everything that they ate. In addition, we recorded their level of tics at that time, like Low, Medium, or High, and anything else we might have noticed. The FG materials will have a form that you can use for your diary. Keep the diary diligently for at least a few weeks, and watch for patterns. We made mistakes along the way, but weeded those products out as we discovered them. The diet can be overwhelming at first, as you discover that you need to replace so many items in your pantry, and you'll find some that you cannot replace. But stick with it and keep reading the labels. Don't let it get you down, it gets easier with time. I'm confident that you'll see improvements if you stick with it.

Good luck, and for any questions or if you need to vent or ask for support, be sure to log onto the FG Member's Bulletin Board. It's very active and very supportive.

Jeff

[Guest Jennifer]

Dear Dan and Maureen,

 

The Feingold Diet is an excellent way to start, that'what we did. I would, however, consider doing some other tests. Some of them which are reccomended are amino acid testing, fatty acid testing and checking for mineral imbalances. The fatty acids are what really helped our son. Many toxins such as nutrasweet are fat storing and about the only way you can get them out is supplementing with fatty acids. Keep in mind that the brain is 60% fat so there is quite the potemtial for toxic accumulation. Correcting a fatty acid imbalance actually gives the body what it needs to start healing. I didn't realize how critical they were until recently.

We have used a company called BodyBio, Dr. Patricia Kane has been researching this area for 20 years. We have been very pleased with them so far. The website is bodybio.com. You can request an information packet which they'll send out to you free of charge (it's full of great information). There is also a book called "Fats that Heal-Fats that Kill" by Udo Erasmus.

 

We too struggled for a long time with our now 8 year old son. It is all well worth the effort. He has been tic free for 3 months now. The greatest thing this whole ordeal has taught me is faith and patience!! Things don't change over night. There little bodies have gone through a fair amount of damage spread out over a period of time- so healing to won't happen quickly. We too experienced the detox symptoms. Because there nervous systems are compromised it seems to exagerate thier symptoms. Any kind of detox stresses the body. It's like someone who tries to quit smoking or drinking coffee....you don't feel good and your grumpy! Only our children tic more.

 

Best luck to the both of you. Your not alone in your struggle. What really helped me was to keep in contact wit parents on the forum you get some great tips and just knowing there are many others out there like you is of comfort.

 

Jennifer