I'm new here - HELP!

[Peggy]

My husband has TS and we have known that my oldest son (now 9) had it since he was 3. His tics until now have been mostly mild. I feel so blessed because he has not had any accompanying conditions or learning problems. But for the past year his tics have not let up and at times he has up to 4 different ones at one time. His tics make him tired and are starting to get much more attention from the people around him. SO, I have spent hours and hours on the internet and in the library trying to figure out what steps to take for him. This website seems like it has so much information but I am overwhelmed by all that I don't know or understand. So for now I have a couple of questions for anyone who has a little bit of time.

 

I would like to find a doctor to work with. What kind of doctors do most of you see? I tried the resource on this website but it didn't give me too many options. The one doctor listed in my area has no experience with Tourette or tics. I am now talking to a couple of naturopathic doctors who do have some experience with Tourette. Any suggestions on questions to ask or how to decide on a doctor?

 

I have started making changes in Joshua's diet. I have removed most dairy, eggs, vinegar and peanuts. I have reduced wheat and sugar. He actually had 5 TIC FREE days a couple of weeks ago. It was beautiful. His tics are back but I am convinced that diet and supplements are key. But again, I am overwhelmed with where to start. I have read about Bonnie's products but I don't really understand them. Any suggestions of a resource for gaining knowledge and understanding on supplements and vitamins?

 

My husband is a wonderful and gifted man. His experience with TS is part of who he is. If given the choice, he wouldn't take it away from his life because of what he has learned through it. I know this in my head but I am broken-hearted as I watch my son struggle.

 

Thanks for being here,

Peggy

[itsme]

Hi Peggy,

 

My nephew's TS just started getting bad over the past couple months. So I recommended Bonnie's sups for him. He is now doing very well. We also take them for me and my kids. We are all doing well. We are also doing a strict diet - No artificial anything. My wife cooks everything from scratch, most of it is very good. It was kind of tough for the first couple weeks making these changes in diet. But the results were indisputible and the soon things just became routine for all of us including my wonderful wife!! who was and is still up at 5 am. cooking breakfast planning out lunch and preparing the evening meal. We're all in this together and when you see great results it makes the difficulty of change seem very small.

 

So, in brief, i would recommend bonnie's sups. And I would (as we do) go to a good environmental dr.

[juls]

I'm a regular reader of this site but I rarely post. My son (age 8) has TS and some of the issues that accompany it. When I first found this site a few years back I learned of Bonnie's vitamins but felt I could never get my son to take all those pills. I also wasn't ready for the expense. But slowly I began to add supplements to my sons life based on what I was reading. I was fueled by the results I was getting. At this point my son swallows 20 supplements a day and his tics are extremely mild, nonexistent on most days in fact. He is very compliant with taking these supplements because he has seem the results.

 

Just recently I looked at Bonnie's vitamins again and did an excel spreadsheet to compare what I was using to her program. I was shocked to see how close the lists were! The amount of supplements to swallow was almost identical too. Over time, I had come up with a very similar program for my son. Based on this I'd have to say that starting with Bonnie's supplements might be a great place to begin.

 

As for doctors I can't help. We've seen many doctors but none that I feel have the knowledge I am looking for. I keep pursuing this though.

 

We have cleaned up our diet as well, but we still have a long way to go. My son LOVES food and strongly resists diet changes. After the new year I am going to remove dairy for a few weeks and see what happens. I think extreme diet changes will be a huge challenge for us as this kid is prone to sneaking food. I have no doubt it is what he needs- not for the tics but for his other issues- but I'm not sure I'm ready for the huge battle that this is likely to bring about.

 

So keep up your research and take baby steps if you have too. You can make a difference in your son's life (and maybe you husband's too). I know the info is quite overwhelming but I'm sure glad it's available!

 

Juls

[LisaM]

Hi Peggy and welcome to latitudes! My best advice is to just keep reading, reading, reading. There is so much information here and other places on the web that it can be overwhelming. You will find that when you read the same thing a month or two later you will connect with the information.

 

We do the Bonnie's vits for my 5 year old and I think they are working well. My daughter's situation is almost definitely PANDAS (strep triggered) and there has been some debate about the grape seed extract in Bonnie's for people with autoimmune (PANDAS) issues so it is in the back of my mind to look for another alternative. But, I must say, that I have shown the Bonnie's vits to several doctors, both conventional and not, and all think they look like a really good multivitamin and have had no problem with them.

 

There are many natural aids that you will find here, many specific to specific kinds of tics and Cheri (Chemar) the facilitator can probably help you greatly with these if you tell the specific things you are seeing.

 

There are other energy treatments to consider as well like accupuncture, chiropractic and NAET (go to naet.com for more info). We are doing the NAET treatments in our family. The concept of it is really very interesting and I highly suggest you read about it and order the books for yourself. I come from a very conventional background but this whole situation with my daughter has really opened our eyes to alternative/energy/diet/lifestyle issues.

 

9 is the beginning of puberty for many kids and I have read here and been told that there really can be an increase in symptoms at this time. It is early though for your child - probably pre-puberty so anything you do now I can only imagine will help.

 

Good luck and keep asking questions. Your husband may even benefit from something you learn!

 

also, I am interested why you took vinegar out of his diet. Did you have specific testing done on him?

[Calicat]

Welcome Peggy!

This website has been the #1 best thing I have found on the internet. Before I found it, I would sit at the computer searching desperately for shreds of information and crying. Now it feels a bit like family. Bad day? Post here and cry on people's shoulders, and get some advice, and pick yourself up and start on the next step. Good day? Post here and people will share in your victories.

 

I personally have not tried Bonnie's supps. One of the reasons I decided to build my daughter's supplement list on my own (with the help of this forum) is that I wanted a sense of control and taking it step by step. Then, if something was helping or not helping, I could adjust. On the other side of the issue, when you are overwhelmed, maybe it would be helpful not to have to think about all those individual supplements.

 

Lots of people suggest keeping a food journal, which is helpful. Personally I like to keep a notebook, and I write down all kinds of tidbits of information I come across, so it is handy and all in one place.

 

I second the vote for an environmental doctor. I am on a waiting list for one right now, and should be in by late spring 2008.

 

When I first came here, it was overwhelming but also gave such relief to find the type of info I was looking for. I highly recommend reading through the pages of this forum, or at least all the topics in the "essential threads" post.

 

Every child is different, and what causes problems for one might not for another. For diet, I think taking away all artificial ingredients is a good thing. It is challenging enough, and not good for any of us anyway.

 

Best of luck to you in this journey.

Calicat

[Peggy]

I thank you all for your responses. It is so encouraging to hear from people who share in this experience. I guess I will go and research what an environmental doctor is. I will also keep reading on this site. Thank you for the tip on the "essential threads". I will start there. I am keeping a food journal which has been very enlightening. The reason I removed vinegar is that I have read quite a bit about the candida diet. My son loves pickles, olives, and aged cheeses and I wondered if they could be a trigger for him. After just 5 or 6 days of diet change, the results were amazing. But like I said, his tics are back and now I am just trying to see which foods really do make a difference. Joshua's tics are mainly facial, and he also sniffs and coughs. He shakes his head, his eyes roll back in his head, he opens his mouth very wide, and occasionally talks in a strange voice.

 

I'm gonna get to my reading! Thank you again for being here,

Peggy

[kim]

Hi Peggy Welcome!

 

I'm a little late here, but I wanted you to look at this too. We have a Dad here who has posted often about controlling tics in himself and his daughter's by following the feingold diet. If you search the forum for "Jeff" and click on his name, it will give you an option to click on to read his posts. Most people /parents here, find eliminating at least some of these things beneficial. Check this out from Dana's site.

 

http://www.danasview.net/phenol.htm

 

Symptoms of phenol sensitivity

 

Some typical symptoms indicating your child may have a phenol problem are [not all of these need be present]: dark circles under the eyes, red face/ears, diarrhea, hyperactivity, aggression, headache, head banging or other self-injury, inappropriate laughter, difficulty falling asleep at night, and night waking for several hours. The typical adult symptom of phenol intolerance is chronic fatigue syndrome, which is the opposite symptom that most children have, altho some children do present as always tired/lethargic, instead of hyper with sleep and other issues.

 

Symptoms of phenol sensitivity

 

Some typical symptoms indicating your child may have a phenol problem are [not all of these need be present]: dark circles under the eyes, red face/ears, diarrhea, hyperactivity, aggression, headache, head banging or other self-injury, inappropriate laughter, difficulty falling asleep at night, and night waking for several hours. The typical adult symptom of phenol intolerance is chronic fatigue syndrome, which is the opposite symptom that most children have, altho some children do present as always tired/lethargic, instead of hyper with sleep and other issues.

 

List of high phenol foods

 

Here is a short list of high phenol foods from Karen Seroussi's book, which you would want to eliminate or at least reduce to prevent overload, is food dyes, tomatoes, apples, peanuts, bananas, oranges, cocoa, red grapes, colored fruits, and milk.

 

Here is the Feingold list of highly phenolic/high salicylate foods: Avoid anything -- food, toiletries, cleaning supplies, art supplies -- that has any of the following ingredients: Synthetic/artificial colors and flavors [for example, FD&C colors, vanillin], BHA, BHT, TBHQ, [all the preceding are made from or related to petroleum], Natural Flavoring (may contain salicylate), Natural Coloring (may contain salicylate), Aspirin and products containing aspirin or salicylic acid, Salicylates, Almonds, Apples, Apricots, Berries (all), Cherries, Chili powder, Cider & cider vinegar (apples), Cloves, Coffee, Cucumbers & pickles, Currants, Grapes & raisins, Nectarines, Oranges, Paprika, Peaches, Peppers (bell & chili), Plums, Prunes, Tangerines, Tea, Tomatoes, Wine & wine vinegar (grapes), Oil of wintergreen (methyl salicylate). Other items to consider are perfumes and fragrances, nitrites and nitrates, monosodium glutamate [MSG], Hydrolized Vegetable Protein [may contain MSG], sulfites/sulfiting agents, benzoates, and corn syrup [made from hydrogen sulfide + corn starch and many other added chemicals].

 

Click here for a list of the relative salicylate content of different foods.

[Chemar]

Hi Peggy

welcome to Latitudes/ACN

 

I am in the thick of a busy work load so can post much now, but I have a link in my signature on what has been helpful for my son, who also has genetic TS

 

just take it a day at a time and step by step so as not to get overwhelmed with all the info.

[sherrysunshine]

Welcome on board Peggy. You are in the right place and will find answers and many friends here.

 

Definately the Environmental Doctor is the way to go. My daughter has had a transient tic disorder, off an on, and we have had great results with such a doctor who is also a DO. She takes supplements and we have definately seen the positive results. She is on magnesium, taurine, zinc and B vitamins and thank God she is doing quite well now.

 

I know how upsetting it is to watch your child struggle but there is hope. It is not easy and you will feel overwhelmed with all the information but after a short time you will be able to sift through it all and find the answers you need.

 

If I can be of any help to you please feel free to contact me.

 

All the best to you and your child.

 

Sherry

[Jeff]

Hi Peggy, My daughters and I are able to control our tics simply by eliminating artificial colors, flavors, and the preservatives BHA, BHT, and TBHQ. You might want to make any dietary changes gradually.... not too many at once. You might find that your son is fine with dairy, wheat, sugar, etc.... it could just be artificial colors. Read labels, and if you see anything like Red #40, Yellow #5, etc, then find an organic or all-natural substitute. You mentioned pickles... most pickles list Yellow #5 as an ingredient !!

As Kim mentioned, we started by following the Feingold program. That was a great learning experience for us, but we have since gotten less strict, and just try to keep those additives out of our house. We find that if we deviate once in a while, our bodies can handle it. If tics do surface, they don't last long as long as we keep our diets clean.

Keep a food diary... record everything he eats and his symptoms. That can be a good tool for identifying triggers, patterns, etc.

Regards. Jeff

[bmom]

Im just curious Jeff, I remember reading that you discovered this by just implementing it to see what would happen, but have you had the IGG done to see if it shows these things on the test? I was just wondering as I am going to have my son tested and was hoping that people have consistently had accurate results.

[Jeff]

Bmom, No, we have never had any testing done. We had such dramatic results when we started eliminating the additives, that we've never had to do anything else...

Jeff

[Peggy]

thank you all for your responses. I appreciate the advice to take it a step at a time and not to change too much at once. I am going to focus on the artificial coloring and sweeteners and the things I know are triggers and I'll keep up with the food diary. My son has been very open to trying new things and not eating what he is used to eating. He just asks "Is it good for me?" I find myself saying I'm not really sure, I'm just trying to figure it out!

 

Jeff, do you and your girls take supplements or just focus on eliminating the additives?

 

Like I was encouraged to do, I am reading, reading, reading! Thanks again,

Peggy