My DD10's Journey - Blogging her treatment

[KazBax]

Hi everyone,

 

I just officially joined this forum yesterday, although I have been lurking for a couple of weeks now when I have time, reading other posts and gathering information. First of all, I want to begin by THANKING each and every person who has posted on this forum! Just reading through different topics and posts has been so helpful, and I'll admit, I am overwhelmed right now by the abundance of information, recommendations, treatments, what works for different people, etc. I am eager to try anything and everything to help my daughter, but I realize I need to take things slow, one step at a time, to truly find out what works, what the causes are for her tics, etc.

 

So I recently, within the last couple of weeks, have self-diagnosed my 10 yr old daughter with tics and mild Tourrette's. It all began over this past summer, when I started noticing facial tics: eye-twitching, nose twitching, grimacing. By the end of the summer, they increased. (She broke her nose in May and so by the time we started noticing the facial tics, we thought it might have been as a result of her surgery or something). By the time school started in August, I was getting concerned, and started my preliminary search on "facial tics" on the internet. The first few sites I came across were just trying to sell books on "cures to get rid of facial tics 100%". I was not about to buy into that. Too many people were selling book that I would have to read to cure my daughter. No thank you. Then I came across a website that talked about Bonnie Grimaldi and displayed her original initial plan of supplements for her child. It also had a link to her website of supplements she now sells. Instead of buying those, I decided to try her original plan so I went out and bought nearly all the different kinds of vitamins that she indicated. See here for the guide I have been following: http://www.oocities.com/torcha.geo/ts_main_bonnie_sup.html

 

I'll admit, I am HORRIBLE about remembering to take pills myself, and so of course making sure my daughter takes them. So take that and the fact that right around the same time, my elderly father who lives with us was hospitalized for a traumatic head injury, and since he got home from the hospital 2 1/2 months ago, I have been his primary caregiver, having to do everything for him like making his meals, coffee, giving him his medication twice a day, dealing with his anxiety, memory loss, etc. So my DD's supplement care kind of got put on the back burner in my mind. Meanwhile though, as I did a bit more research, I found that facial tics are a sign of Tourrette's, and when I read that it typically begins with vocal tics, the lightbulb went off!!

 

To give you her full history, ever since she was a toddler, she always banged her head against the carseat, a chair, etc. We had always attributed it to the fact that we rocked her too much when she was a baby, because we did rock her a LOT. My mother used to worry that she was autistic because she rocked so much, but the pediatrician assured us that no, she was fine. Then when she was about 4 yrs old, she developed a cough that wouldn't go away. After months and months, maybe even nearly a year of her constantly clearing her throat and little coughs, I took her to an allergist. They did an environmental allergy test on her (and found she is allergic to nearly everything), and said she had asthma. He prescribed Advair and Singulair and said she would be fine. After months of seeing no improvement, I stopped giving her both medications and determined that doctor really didn't know what he was talking about. Her cough/throat clearing would wax and wane with the different seasons, and we just got used to it. Over the years, the head banging continued, and humming, especially when she is in the car, or going to sleep. She used to bang her head extremely hard on the pillow while falling asleep, but eventually she stopped doing that. I guess she grew out of it?

 

Well so now after my research, I realize that all that slight coughing and throat clearing was really vocal tics all along, as well as the head banging, all signs of TS. I wish I had labeled the vocal tics as "tics" years ago so that I would have identified this earlier, and learned earlier what triggers them.

 

So now... with all the supplements I've been giving her, and trying to be more regular about, I have seen no change at all. After reading so much about the Natural Calm over the last couple of weeks, I am going to try that instead. I ordered it on Monday and am waiting for it to come in. Perhaps the Magnesium pill I was giving her before isn't the right kind. I am also definitely going to try Epsom Salt baths to see if that does anything. I had never realized that would help before until reading about it yesterday on here.

 

Also, seeing that others are using the Bontech products, I may try buying the Bontech ts-PLUS CONTROL and ts-PLUS Grape X in substitution of all the other pills I am giving her. Once I get her on Natural Calm and the Bontech, then I plan to monitor for a couple of weeks to see if those have any effect on the tics at all. If not, then I may start slowly easing her into a new diet by eliminating things one by one. I definitely want that to be the last resort as she is already such a picky eater, and I just know that all the things that may be triggering this are the things she loves. We'll see though.

 

Thank you in advance for your suggestions and support! I am just glad to have found this site, and look forward to trying out different things. Even if things are not successful for her, at least I will know I have tried.

 

I look back now on all the years of reprimanding her for the head-banging, the focal tics, and now the facial tics, and I feel so guilty and wish I had done more research. It wasn't until the facial tics that I realized that she has no idea that she even does them, and doesn't realize it, and that she can't stop when I tell her to. It is so sad to see. The facial tics now are every few seconds or constant. Even if we can just relieve those, I will be happy. My fear now is that she will start getting teased as more people notice, and as she enters middle school next year.

 

Anyways...I'll continue to post/blog our progress on here!

[KazBax]

I just want to add that I want to hold off on seeing a doctor about all this yet, until I have first tried the Magnesium, supplements, and diet changes first. From everything I've read, she isn't extreme enough to necessarily benefit from any medications they might prescribe, and I don't want her to take any unnecessary medications. In addition, I don't even know yet where to begin as far as which kind of doctor to go to. I have heard neurologists, pyschiatrists, pediatricians, etc. I think if I had to, I would start by consulting our pediatrician first, and seeing what he recommends. I contacted a local Tourrettes support group here and the rep there was not much help as recommending a doctor at all. She said that she just recommends psychiatrists instead of neurologists, but didn't recommend anyone.

 

Also, my daughter is extremely active in dance. She dances competitively (ballet, modern, jazz) and so I want to make sure to keep energy in mind along with any diet changes I may make along the way, etc.

 

I'm going to go through other threads now to hopefully read more about the Bontech products, etc. I was just looking on her website and is the dosage for the ts-PLUS CONTROL really up to 20 tablets a day? Sheesh!!

[Lynn777]

Hello,

 

Welcome! Sorry to hear what you are going through. I don't have a lot of time to write, but wanted to mention two quick things about the Bonnie's.

 

1. If you do start them, I would give it much longer then just a few weeks before trying something else (unless of course you think they are working against her) it took us 2-4 weeks to notice any change then it progressed from there.

 

2. I make my son a smoothies in the a.m. & one in the p.m. & that is how we get all the pills down. He actually likes them now!

 

Lastly, I would clean up her diet as much as possible right away. No artificial colors, preservatives, sweeteners. No msg, high fructose corn syrup, etc. Stick with whole foods.

 

Best wishes.

 

Lynn

[KazBax]

Lynn, thank you so much for the tips ! I definitely plan on trying them for at least a month before any extreme dieting, but going ahead and beginning the elimination of the artificial stuff and sweeteners is a good idea. I talked to her a bit about it today, and she of course is not excited at all. I love the smoothie idea!!! I wouldn't have time to make them for her in the morning, but I definitely could every p.m. So do you just break open the capsules and mix them in the smoothie?

 

I'm going to take her to Trader Joe's and Whole Foods this weekend and have her shop with me to see if she can find some snacks and stuff she likes (to replace stuff she currently eats). When I mentioned the possibility of maybe eliminating dairy, she kind of freaked out a bit because she LOVES cheese they make her drink milk at school everyday, and she didn't want to only drink water instead. This will definitely be a battle for her!

 

Anyone have any recommendations or ideas for healthy snacks to get for her that I could find at grocery stores or Trader Joe's or Whole Foods, that your kids have liked? She normally loves fruit roll-ups, string cheese, Little Bites, yogurts, Chewy Granola Bars, Goldfish and some other general snacky stuff. She has to take snack to school everyday so I need to find some alternatives (that she won't hate). I've tried to get her to like rice cakes before but she didn't like them at all.

[ilovedogs]

Adding to what Lynn said here; changing a few things in the diet are always positives even if they don't help with tics. Getting rid of MSG, high fructose corn syrup, nitrated meats, and food colorings are easy changes to make.

My son finds the epsom salts baths very relaxing and will specifically ask for one if he's had an active day. Actually, we all do epsom salt foot soaks a few times a week as a family since we're pretty active and our feet ache often, LOL!

 

Welcome to the boards, too! I forgot to do this first. I have to be honest and tell you that my 12 year old son has been ticcing for 3 years now and I haven't seen a benefit from any changes I've made. But, I have to also be honest and say that I haven't been as diligent as I needed to be in terms of cleaning up his diet or in keeping up with supplements. His tics really don't bother him so much, not as much as they bother me(being honest here). We have never seen a doctor of any kind for his tics except for our naturopath. Personally, I might try a psychiatrist of some sort but mainly for cognitive behavior therapy, not necessarily for a diagnosis. Also, I wanted to tell you that my son plays competitive tennis. He travels around the country and holds a national ranking in the boys 12 division. He trains hard and works out, and spends a lot of time on the court. I have found the tennis to be one of the best things for him: it builds his confidence, he's made friends from all over the country, and it gives his very active body an outlet.

 

Allergies can play a huge role in tics. We have found that ds tics the most when exposed to allergens, mostly environmental( we see more tics in the fall and spring). Histamine increasing in the body can also increase norepinephrine which, in turn, increases dopamine which can contribute to tics. Most people who tic have higher levels of dopamine but have lower levels of seratonin. You may also want to start her on some probiotics or eating yogurt daily, etc. Seratonin is produced in the gastro system and a healthy gastro system can only benefit overall physical and mental health. Other things that can contribute to tics are reactions to chlorine, new carpet or cleaning products, etc. Basically, environmental or chemical sensitivities including mold can raise those histamine levels and disrupt the neurological pathways. Hope this helps!

 

Bonnie

[KazBax]

Thanks Bonnie. Yes, I have been thinking about trying a probiotic, and have just been slacking about getting one. I read somewhere on here that someone recommended a kids probiotic that they sell at CVS, so I have been meaning to get over there to buy it, but since CVS is the farthest pharmacy from me (compared to others), I just haven't done it yet. She loves yogurt, but if I am going to try and cut out dairy at all, she'd have to give that up too.

 

So I didn't notice any different yesterday after her Epsom Salt bath. She actually had two of them, one in the afternoon and another one when she got home from dance.

 

Today, our Natural Calm was delivered so she got her first dose of that.

 

Based on everyone's comments on how much allergies affect tics, it looks like I am really going to have to focus more on the environmental allergens around her. We'll see how it goes. I want to introduce one change at a time though...mainly so I can know what affects the tics and what doesn't, what helps and what doesn't. If I change her diet and remove allergens all at once, I may never know what aggravates the tics the most.

 

I'll post again in a day or two after she has had a few doses of the Natural Calm to report if I notice any changes.

[ilovedogs]

kat, you're right: do one change at a time. If you try to change too much at one time you won't know exactly what it is that's working. Cleaning up the diet and then adding magnesium is a great first step. Then try elimination diets, tackling the allergens, etc.

 

B

[KazBax]

Okay, well we have been doing pretty well at remembering to take the Natural Calm everyday, and she has had the Epsom Salt baths several times a week, and I have not seen any real improvement yet. She had a Ballet performance last night, and another one again tonight...and thankfully, when she is on stage and "performing", I have not noticed the tics. But aside from that, they are there.

 

I am going to go ahead and order Bonnie G's supplements and start those. Also, this weekend we are going shopping at Trader Joe's and Whole Foods so she can pick out some snacks and foods to try. I have slowly been trying to decrease her intake of any sodas, juices, etc that may have anything that would trigger. The actual food she eats will be harder, and I am going to gradually phase those changes in.

 

I am also thinking about taking her to have a food allergy test done. The more I read up on things, the more it seems that food allergies can have a lot to do with the tics, so it would be nice to know at least if there is anything she could eliminate such as corn, wheat, etc.

[Cj60]

Sounds like you've got yourself a plan.

I'm glad that your're keeping diet on your radar. I just figure that once a diet is as clean as possible, even if you still aren't sure what's contributing to a tic or a behavior, at least you know what's not causing them. And the shorter the list to keep an eye on, the better chance you have of identifying triggers. We've been at this around five months now, and we still have daily wonderings about this food item or that food item.

 

For what it's worth, with the exception of a few of the prime instigators (hfcs, for example), it took us at least a couple of months before we were confident that dietary modifications had begun to have an overall positive effect. And we're hoping that over time they will continue to do so.

 

Good luck with your efforts,

Chris

[KazBax]

Well on Friday, the day after my last post, DD came home from school with a 103 degree fever. (The Flu is going around her school, DH's work, and everywhere). Anytime she is sick, she barely eats. Saturday I went to Trader Joe's and Whole Foods on my own to do some grocery shopping, and I was in awe at all the options we have for substitutions. I spent a ton of money and bought a lot of different things for her to try out.

 

All weekend, I did not see a decrease in tics at all. Of course, she also has been sic with a fever all weekend, and I think I read from various people on here that they can increase with fevers? So not sure on whether I can even count this weekend. I have kept her home today as she still had a slight fever this morning.

 

Amazing Grass's "Green Superfood Chocolate"

At Whole Foods I saw a chocolate drink mix to add to milk called "Green SuperFood" made by Amazing Grass. They had a kids and adult version, is gluten-free and helps you get your daily servings of fruits and veggies. When I first saw it, I thought, "This would be great for her to add to rice milk, give her a sense of being able to have chocolate and a sweet drink, give her vitamins, and it is healthy for her!" So instead of buying the canister of the kids version, they had little 1 serving sample envelopes you could buy of the adult versions. So I bought a chocolate envelope, a lemon-lime energy one, and a berry flavored one. This morning she tried the chocolate one added to Rice Milk, and loved it! After she drank it, and I hope I am not jinxing myself here, but I feel like I noticed less tics. So I am of course going to keep observing her throughout the day.

 

I also gave her some gluten-free waffles from Trader Joe's this morning with organic maple syrup, and she really didn't like the waffles at all. I tried them as well and will admit they are not tasty, even with the syrup. Next time I go back to Whole Foods I am going to look for a different kind.

 

Overall, her appetite has been very low this weekend, as it normally is when she is sick. She has barely eaten anything, but has been doing great about drinking lots of water.

 

Natural Calm

We have been doing pretty good about drinking Natural Calm each day. I still have her at 1/2 tsp for now, but plan to increase is by 1/4 tsp to see if that does anything.

 

Bach's "Rescue Remedy"

At Whole Foods I also saw that they had the Rescue Remedy (along with a TON of other Bach products), so I went ahead and bought some. I gave her a dose last night but did not notice any decrease in tics or anything at all. I am going to reserve that for use on days before school exams, dance performances, etc.

 

Multivitamin

I have ordered Kirkman's "Spectrum Complete" and am still waiting for it to arrive.

 

Other Supplements

I said the other day that I was going to go ahead and order the Bontech supplements, but I have decided to wait a little bit on that. Since I have so many bottles of pills to finish up of ingredients already in her supplements, I decided to wait and finish those out first, then order her's later when we run out of what we already have.

[CDNRaider]

Hi Kat and welcome to the forum, it is exceptional. My son is just about 8 and we have had tics for about a year and a half. My approach to Zack is to have no stone unturned and I have tryed alot of things!! The best things for us have been adding the magnesium supplement (the kids calm) and changing our diet to the Feingold diet -- no artificial colours, preservatives etc -- I remember when he was on a different diet and we gave him a handful of red grapes and his tics went crazy, since we have been on the diet more or less. I also found that the Jarrow 1-3 multi vitamin has been a good vitamin as most vitamins had very little B vitamin content. It's a long and frustrating path but you will find things that help you guys and this forum contains amazing information. Best of luck, Craig

[KazBax]

Well it has been 2 months since I last posted. My DD went to visit her dad for 2 weeks during Christmas, so I was unable to really control what she ate or how well she took her vitamins there.

 

So since the beginning of January, we do pretty well taking her morning dosage of vitamins and Natural Calm (it is easy for me to grab them for her to take/drink on the way to school), but since our evening schedules are SO busy....we often, usually, miss the evening dosage.

 

Also, I backed off the restrictive diet thing because it was stressing her out so much, and I wanted to see how well the new Multi, the Natural Calm, and the regular intake of all the vitamins would do. The tics are always still there, and lately seem to be getting worse. Of course...she is also gets candy from random people all the time which I am sure certainly doesn't help!

 

I definitely do not buy anything from the store that would cause them, but it's what she gets everywhere else that she is.

 

So...I think that this week I am going to try to have her go dairy-free again, to see if that has any impact at all. Then I think we'll have to slowly start elminating things again and see how things go. I'll check back in a week to let you all know the results.

[mommyfor4]

Well it has been 2 months since I last posted. My DD went to visit her dad for 2 weeks during Christmas, so I was unable to really control what she ate or how well she took her vitamins there.

 

So since the beginning of January, we do pretty well taking her morning dosage of vitamins and Natural Calm (it is easy for me to grab them for her to take/drink on the way to school), but since our evening schedules are SO busy....we often, usually, miss the evening dosage.

 

Also, I backed off the restrictive diet thing because it was stressing her out so much, and I wanted to see how well the new Multi, the Natural Calm, and the regular intake of all the vitamins would do. The tics are always still there, and lately seem to be getting worse. Of course...she is also gets candy from random people all the time which I am sure certainly doesn't help!

 

I definitely do not buy anything from the store that would cause them, but it's what she gets everywhere else that she is.

 

So...I think that this week I am going to try to have her go dairy-free again, to see if that has any impact at all. Then I think we'll have to slowly start elminating things again and see how things go. I'll check back in a week to let you all know the results.

 

Best of luck Kat,

An elimination diet can be really intensive but we found it made remarkable changes. Our son still tics but generally it is easier to find the trigger. Dairy took some time for us to see changes so hang in there for a while before eliminating it as a trigger, I wish you the best. It is highly frustrating when you are feeding your child all the best things and others keep introducing candy etc. you may need to come up with a list of acceptable treats to help others transition...seems alot of people feel they need to treat our kids because they feel we are depriving them somehow! I found giving those people a list of things that seem like treats helped some...

 

Megan