No idea where or how to start eliminating my daughter's tics!

[candikane]

I recently purchased "Natural Treatments for Tics & Tourette's: A Patient and Family Guide" and have been reading it non-stop. I have a 5.5 yr old daughter who has had numerous motor and vocal tics for 1.5 years now. She was diagnosed with a tic disorder, possibly Tourette's, and we were told there's nothing that can be done to help her. The DR told us about medications but that they are brutal and wouldn't be prescribed unless the tics were severely affecting her life. We have yet to go back.

 

I've been researching online and visiting different forum boards for different ideas and approaches being used. I found this website in the book I mentioned earlier and figured this was the place to be.

 

I'm willing to do any hard work that needs to be done as far as changing her diet, lifestyle, etc. Mine included. I'm just so overwhelmed with what I've read that I don't even know where to start! Do I do allergy & environmental testing first? Is it covered under my Dean insurance? I'm not sure I could get a conventional doctor to "just do it". They haven't up until now seemed to care about any sort of treatment available for my daughter, and from what I've read numerous times online, they're not too keen on "natural" treatments of any kind being successful. I'm pretty certain that the kind of Dr I would need is probably not covered under Insurance!?

 

I feel like if I try to just start with changing her diet I'm going to be way too overwhelmed to make progress with it and pinpoint what is causing the issues. Do I just pull a random food from her diet? For how long? What do I start with? I hear gluten and dairy are the two biggest food triggers, followed by artificial colorings/flavorings, etc....

 

How DO you even find foods that DON'T contain these products? Do you just spend 15 hours in the grocery store searching every single label? I know a lot of things are also listed by NUMEROUS different names (such as sugar, and high fructose corn syrup), so how can you honestly know exactly what to look for?? Are there any "shopping lists" possibly that others have created with specific foods, and brands, that are usable?

 

What about vitamins? I've read of a few different brands offered, but I'm not able to find those specific ones to buy. Could someone offer a children's chewable vitamin/mineral supplement that I could find? Do I start this right away? We haven't been vigilant about vitamins, but currently have "Disney MultiVitamin Princess Gummies", and I never realized these might have additives that are affecting her! Here's the ingredients list I took from offline: Corn Syrup , Sugar , Grape Juice Concentrate , Gelatin , Modified Corn Starch , Citric Acid , Lactic Acid , Purple Berry Color Concentrate , (Maqui Berry Juice Concentrate , Sugar) , Maltodextrin , Fractionated Coconut Oil , Beeswax , Dicalcium Phosphate , Natural Flavors , Black Carrot Juice Color Concentrate , Silica , Annatto Color , Mannitol -- No artificial flavors or colors

 

I feel so lost and hopeless right now and I hope this forum will help give me a little hope. I'm a single mother, working full time, and I feel completely desperate right now. I really want to find answers before the tics begin to affect her social life as well. She's at the age where kids are starting to become mean and I really hate to think of how her school life will become if this isn't brought under control soon.

 

Sorry for the essay, I just felt a tiny pinch of hope when I found the book, and this forum, and really hope I can get something going for my daughter. It's refreshing to feel like my daughter and I might be understood as well, and have a place to call "home" for support, tips, ideas, and positive outcomes.

Edited April 21, 2011 by candikane

[Cj60]

Hi,

 

I think you'll find this website helpful!

 

My quick recommendations: read the "Helpful threads..." and "Finding medical help" links at the top of this forum. You'll get information for two of your main concerns (what kind of dr. you might seek out, and what kinds of tests to start with).

 

We found an environmental dr. who has helped guide us through some important testing. Most beneficial to us were the food allergy tests (the skin prick kind). Armed with information from those tests, modifying our son's diet was more of a manageable task. But it was still hard, and indeed overwhelming at times. And yes, it starts by spending twice as much time (at least) making your shopping list and doing your shopping. Every detail on the ingredients list is relevant. But, if you stick with it, you develop a routine and it's not long before it's part of your lifestyle.

 

The other most important findings I have had have come directly from the very very helpful people on this forum: eliminating all artificials and all preservatives, eating as organic as we can, supplementing with magnesium (and incorporating epsom salt baths), and supplementing with a potent multivitamin. If you read around you'll see lots on all of these important starting steps.

 

Good luck; I'm hoping things will be better for you and your daughter soon.

 

Chris

Edited April 21, 2011 by Cj60

[ameecram]

Hi,

 

I see you have Dean Insurance?? Are you located in WI...you can pm me if you feel more comfortable. We are in Madison.

[candikane]

Hi,

 

I see you have Dean Insurance?? Are you located in WI...you can pm me if you feel more comfortable. We are in Madison.

 

 

Yes! I'm about 25 miles from Madison!!

[candikane]

Hi,

 

I think you'll find this website helpful!

 

My quick recommendations: read the "Helpful threads..." and "Finding medical help" links at the top of this forum. You'll get information for two of your main concerns (what kind of dr. you might seek out, and what kinds of tests to start with).

 

We found an environmental dr. who has helped guide us through some important testing. Most beneficial to us were the food allergy tests (the skin prick kind). Armed with information from those tests, modifying our son's diet was more of a manageable task. But it was still hard, and indeed overwhelming at times. And yes, it starts by spending twice as much time (at least) making your shopping list and doing your shopping. Every detail on the ingredients list is relevant. But, if you stick with it, you develop a routine and it's not long before it's part of your lifestyle.

 

The other most important findings I have had have come directly from the very very helpful people on this forum: eliminating all artificials and all preservatives, eating as organic as we can, supplementing with magnesium (and incorporating epsom salt baths), and supplementing with a potent multivitamin. If you read around you'll see lots on all of these important starting steps.

 

Good luck; I'm hoping things will be better for you and your daughter soon.

 

Chris

 

Thank you! I'll definitely get to reading and hopefully find a good doctor in the area for help. I've planned to start cleaning out my cupboards today and replacing with organic foods. It's pretty insane to see some of the ingredients in some snacks of my daughters that I THOUGHT were healthy... like our Welch's fruit snacks for instance. I never realized it had so many additives Thanks for the reply!

[ameecram]

Hi,

 

I see you have Dean Insurance?? Are you located in WI...you can pm me if you feel more comfortable. We are in Madison.

 

 

Yes! I'm about 25 miles from Madison!!

 

I'm not sure where you are located, but Dean does have some doctors that are more open to alternative treatments. We have used a DAN doctor in the past, and currently work with a naturopath in Madison for the past 2 years. My son is 6, and our pediatrician is understanding of what we are doing, he knows we work with a naturopath as well, and it feels like we have a good team. But it did take a long time to find the right docs. We shop at Whole Foods and Trader Joes, the co-ops are great as well. We are GF, CF, and soy free. The diet completely changed our life, we emptied our cupboards, there was nothing left! But slowly we figured things out, and the diet became much easier. We could never go back, we are all so much healthier because of our son. My son does not have tourettes, just tics mainly associated with food and outdoor allergies. Do you have any family history? Let me know if you have any questions, I know how completely overwhelming and depressing your situation feels right now - but it will be ok, you will do what you need to do, and this forum will provide you with answers and hope!

[candikane]

Hi,

 

I see you have Dean Insurance?? Are you located in WI...you can pm me if you feel more comfortable. We are in Madison.

 

 

Yes! I'm about 25 miles from Madison!!

 

I'm not sure where you are located, but Dean does have some doctors that are more open to alternative treatments. We have used a DAN doctor in the past, and currently work with a naturopath in Madison for the past 2 years. My son is 6, and our pediatrician is understanding of what we are doing, he knows we work with a naturopath as well, and it feels like we have a good team. But it did take a long time to find the right docs. We shop at Whole Foods and Trader Joes, the co-ops are great as well. We are GF, CF, and soy free. The diet completely changed our life, we emptied our cupboards, there was nothing left! But slowly we figured things out, and the diet became much easier. We could never go back, we are all so much healthier because of our son. My son does not have tourettes, just tics mainly associated with food and outdoor allergies. Do you have any family history? Let me know if you have any questions, I know how completely overwhelming and depressing your situation feels right now - but it will be ok, you will do what you need to do, and this forum will provide you with answers and hope!

 

 

I work in Madison and we spend most of our time there (entertainment, shopping, etc) so a Dr in Madison is no problem at all. I've seen numerous doctors and it seems like I can't find one to really listen and care, and try to help! I feel like I have to be her doctor and just tell the Dr we see what to do and what tests to run. It's insane. I want someone who cares enough and knows what to do and what will help!

 

My daughter doesn't "officially" have Tourettes, but she's had a tic disorder for over 1.5 yrs, so I'm sure it would be diagnosed as that if I continued to bring her to different doctors. I gave up the dr search because I received the same information.... nothing can be done. It might go away. It might get worse. --- REALLY?! How helpful. (Atleast it was a better answer than the guy who told me that my daughter had tics for attention, because I didn't "give her enough love, or attention"!!!!)

 

I'm not aware of any history of Tourettes or tics, but definitely a history of food and other allergies (myself included). I wouldn't be surprised to find out she had allergies as well. Possibly the cause of these tics, stomache aches, constipation, and lately aggressiveness. She was always such a calm, VERY well-mannered, very loving child. She basically has mood swings now of aggressiveness, I don't know where it comes from. I blame myself for the all the pre-processed foods now

 

Is the Naturopath doctor you see covered with insurance? I don't think the state of WI allows any to be covered under insurance, right? Or are their certain procedures/tests they do that are covered with some insurances? I've read both ways. What a hit to the high I was feeling. Out of pocket would be really difficult for me, being a single mother.

 

Do you mind me asking which Dr you use? I've tried probably 10 pediatrician and family medicine Dr's for my daughter and have yet to find one that I feel really cares, reads charts, wants to help, etc. It's sad really

 

I felt some hope the second I found this board, and even more upon finding you... a local! Thanks for all the great info so far! I'm getting that basically to be free of all artificial perservative, colors, and flavors... I could go all Organic? How would you compare between Whole Foods and Trader Joes (selection, price), and have you been to the Willy St co-op at all? I'm North of Madison.... so Whole Foods is a good hour+ away for me. If it's by far the best though then I'll be heading that way!

 

Thanks again for all the info!!

Edited April 23, 2011 by candikane

[pasha20]

Hi,

 

I'm from Waukesha, Wi and just read your post. My daughter was in the process of being diagnosed with Tourettes early last year, so I wanted to share with you our journey, as she now has minimal tics, so minimal that the average person would not even notice.

 

We started noticing very minor motor tics in my daughter around 2nd and 3rd grade...nothing major, just some raising of the eyebrows and other minor facial movements. During the summer of 2009, right at the end of 3rd grade, her tics took a turn for the worse. She started head and neck jerking, painful enough that we had her treated by our chiropractor once every week or two. We started her on Tic Tamer, which seemed to help lessen the motor tics a bit. A few weeks later, the vocal tics started. They ranged from throat clearing, changes in her vocal pitch, and eventually loud bark-like yelling. I had her bloodwork sent down to the University of Oklahoma, where it was tested for PANDAS. Her titer levels were consistent with other children with PANDAS, but we were never able to get a neurologist locally to diagnose her with it, nor treat her for it. She was seen by a top pediatric neurologist in the area, who prescribed her with Clonidine. By Labor Day weekend, the swearing tic started. I pulled her out of school for 2 days, terrified and feeling helpless at the same time. The principal wanted her back in school, and ended up having a presentation with both 4th grade classes to educate the children on her disorder. My daughter and I both cried many tears during that presentation, even more at the end, as the kids started welcoming her back, telling her how much they missed her, and all asking if they could sit next to her at lunch. Those 2 classrooms of kids banded together and protected her from the teasing of others. It was comforting to say the least. The side effects of the Clonidine were starting to affect her in school, as she was falling asleep. Her personality was also not the same anymore...my energetic, talkative daughter was now coming home from school and simply falling asleep on the couch. Tired of the side effects, we eventually switched her to Topamax. This seemed to help a bit, but not much. We tried eliminating gluten and dairy with no changes in her tics. I also had her allergy tested, which only came back with grasses.

 

I was introduced to Isotonix OPC-3 (a very strong antioxidant) by a neighbor earlier in summer to help my oldest son with his allergies. By the end of September, she urged me to try it with my daughter. As skeptical as I was, I figured I had nothing to lose at this point. After 3 days on the OPC-3, the swearing tic stopped completely. By this time, she was now seeing a new pediatric neurologist in the area that specializes in movement disorders. I tried explaining the approach that we were trying, but we were instead told that we should now stop the Topamax, as it was suppressing her appetite. The only suggestion I was given to treat her remaining vocal tics was to put her on heavy medications, and these came with hefty side effects...risk of a permanent tic disorder, risk of an allergic reaction that would require a trip to the ER, and she would need to have cardiology tests done prior to and every 3 months after beginning the medications. I knew at that point my only option was to stick with the nutritional supplements, and find a way on my own to help my daughter. I then started diving into research on how her diet may be affecting her, as she still had some vocal tics, which also consisted of stuttering her speech. We eventually started eliminating as much of the food dyes as possible, along with nitrates, High Fructose Corn Syrup (HFCS) and caffeine. I gave Bonnie's Vitamins a try for several months...my daughter was a trooper about having to swallow so many pills a day. I found out the hard way that fish oils are not good for vocal tics...quickly switched her to a flax seed Omega. Fast forward to today, she takes only the following: Isotonix Might-A-Mins Spectrum OPC-3, Isotonix Might-A-Mins Multivitamin, a Flax Seed Omega, and Advanced Co-Q10. Her speech is now very fluent, her personality is beautiful, witty and shining. I cannot think of the last time I saw a motor tic. She continues to avoid food dyes, nitrates, HFCS and caffeine. We shop at Good Harvest if she ever asks for salami, bacon or beef jerky. We switched to organic meats, eggs and milk to avoid the hormones and antibiotics. We carefully read labels, and believe me, food companies are catching on - many will display "no HFCS" right on the front of their packages. There are plenty of name brand products that you can buy that are "safer" than others...ie: Breyers Ice Cream, Log Cabin Syrup, Hormel lunch meat with no nitrates, Oscar Meyer Angus Beef hot dogs with no nitrates, bakery cookies, Sierra Mist Natural soda or Jones Cream Soda, etc. It does take time in the beginning to read labels and find what's acceptable, but once you know, it becomes much easier. My daughter is now 11 and in 5th grade, and she will actually read labels for me faster than I can. She has taken ownership of her health. At her Valentines party at school, I watched her give away her "bad" candy - she knows her tics increase if she caves in and eats it. Don't get me wrong, there are times that things slip into her diet, and other times that we give her a "break" and let her have something that is normally forbidden. But I truly believe if body is healthy and strong, it can handle those occasional treats.

 

My daughter's victorious moment was late last year at her follow-up appointment with the neurologist...she is stumped with my daughter's amazing progress, and no longer needs to see her.

 

Good luck with everything and please let me know if I can be of any help!

Kristine

[ameecram]

My son has had tics for 3-4years, we didn't even realize what we were seeing for a very long time. After testing food allergies, our naturopath has been treating him for a leaky gut...he can back with 23 food allergies which really pointed us in the direction of leaky gut. We also did the Cunningham test to rule out Pandas. There are so many directions to explore, it is so hard to know where to begin. The allergy tests were most helpful, gave us direction, and brought positive results. Our son is also on many supplements to heal his gut and boost his immune system. As far as doctors, I'll pm you a doctor who I think would be worthwhile to see. I'm not saying she will be your one and only, I think it would also be a good idea if you can afford it to see some sort of naturopath or environmental doctor. Our naturopath is not covered, but we order labs and tests through our Dean doctor, and he understands we need to do it that way to get it covered. Our situation is different, because thankfully my husbands job covers all of our expenses, including our naturopath and my son's supplements, but it wasn't always that way and I know how incredibly expensive it can be...we were selling off furniture to pay for things. As far as shopping, I would have a hard time doing without Trader Joes or Whole Foods...I go to both every week. Woodmans actually carries quite a bit as well, it's just too hard to go to that many grocery stores every week. I have never been to Willy St. Co-op, but need to get there, heard it's great! There is so much to discuss, explore, research...it's a neverending battle to figure things out. I will pm you!!

[Momto2]

Hi,

 

I hope you don't mind me jumping in here, but this thread really hits close to home. I too have a daughter with a tic disorder and we also live in Wisconsin. We live between Milwaukee and Madison (about 10 minutes from Waukesha.) My daughter has had tics for over 5 years and I actually thought they were "phasing out." However, things for some reason have changed in the past few weeks and she has had many different kinds of tics show up. However, they are coming and going very quickly. I really don't understand it and I don't know what I should do next. I am just so worried for her. I am thankful for this forum, as I don't know of anywhere else to find any support.

 

Amy

[ameecram]

Hi,

 

I hope you don't mind me jumping in here, but this thread really hits close to home. I too have a daughter with a tic disorder and we also live in Wisconsin. We live between Milwaukee and Madison (about 10 minutes from Waukesha.) My daughter has had tics for over 5 years and I actually thought they were "phasing out." However, things for some reason have changed in the past few weeks and she has had many different kinds of tics show up. However, they are coming and going very quickly. I really don't understand it and I don't know what I should do next. I am just so worried for her. I am thankful for this forum, as I don't know of anywhere else to find any support.

 

Amy

 

 

Has she been checked for food or environmental allergies? The hardest time my son ever had with tics was during a time when his outdoor allergies were out of control, multiple tics happening and it was very scary. Just a thought!

[Momto2]

Hi,

 

I hope you don't mind me jumping in here, but this thread really hits close to home. I too have a daughter with a tic disorder and we also live in Wisconsin. We live between Milwaukee and Madison (about 10 minutes from Waukesha.) My daughter has had tics for over 5 years and I actually thought they were "phasing out." However, things for some reason have changed in the past few weeks and she has had many different kinds of tics show up. However, they are coming and going very quickly. I really don't understand it and I don't know what I should do next. I am just so worried for her. I am thankful for this forum, as I don't know of anywhere else to find any support.

 

Amy

 

 

Has she been checked for food or environmental allergies? The hardest time my son ever had with tics was during a time when his outdoor allergies were out of control, multiple tics happening and it was very scary. Just a thought!

 

No she hasn't been checked for any allergies. Would there be more obvious signs if she had allergies - like stomach issues or sneezing, coughing, etc.? She doesn't have any symptoms like that. Also, what kind of doctor/provider do you see if you want allergy testing done?

Thx!

 

Amy

[ameecram]

Hi,

 

I hope you don't mind me jumping in here, but this thread really hits close to home. I too have a daughter with a tic disorder and we also live in Wisconsin. We live between Milwaukee and Madison (about 10 minutes from Waukesha.) My daughter has had tics for over 5 years and I actually thought they were "phasing out." However, things for some reason have changed in the past few weeks and she has had many different kinds of tics show up. However, they are coming and going very quickly. I really don't understand it and I don't know what I should do next. I am just so worried for her. I am thankful for this forum, as I don't know of anywhere else to find any support.

 

Amy

 

 

Has she been checked for food or environmental allergies? The hardest time my son ever had with tics was during a time when his outdoor allergies were out of control, multiple tics happening and it was very scary. Just a thought!

 

No she hasn't been checked for any allergies. Would there be more obvious signs if she had allergies - like stomach issues or sneezing, coughing, etc.? She doesn't have any symptoms like that. Also, what kind of doctor/provider do you see if you want allergy testing done?

Thx!

 

Amy

 

My DS6 has symptoms including puffy eyes, sneezing, itchy eyes and throat - very obvious symptoms! He also has food allergies, which were not so obvious. He was sensitive to many foods that we had no idea he was sensitive to. We first did the RAST testing on the skin, which showed no food allergies. The blood tests showed us the food sensitivities and gave us some direction. An allergist can do these things, but we did them through our naturopath. Food sensitiities can be very tricky to figure out, but it's definitely something to rule out when looking at tic triggers.

[Cj60]

Just a note that environmental allergies may not have readily noticeable symptoms that we most typically associate with them (sneezing, coughing, eye itching, etc.). The first appearance of tics in my son was in the Spring, as it was last year (4 yrs. after the first time). Again, this year the Spring has bought with it a slight increase.

 

When we allergy tested with an environmental dr., we only tested for food sensitivities. What we learned from those tests was significant in how we went about addressing tic issues. Now I'm starting to think it's time to do the tests for inhalants, even though my son never sneezes coughs itches etc. due to allergies.

 

Chris

[proudmomma]

I agree completely!! I too just read the book and am very confused as to what to do next which is exactly why i joined this website. I have convinced our family Dr. to read the book because all other doctors i have tried to talk to will not help us. So far, we have eliminated dairy, artificial colors, flavors, and most preservatives to our sons diet and within a month almost all of his vocal tics have stopped. But i am not sure if it is from what we are doing or not, and he is still has some motor tics. If anyone out there knows where we go from here, some information would be much appreciated! Thanks