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Success Story - Thank You!


QsMom

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First, I wanted to take some time to THANK many of you who have posted your ideas, successes and stories on this board. You have helped me to help my son regain his health and helped my family have some peace of mind. Because of the ideas I received here, I’m able to share our recent success with you. We went from “all day tics” to now – no motor tics and only peridoic throat clearing that is noticable to only me.

 

Here is my son’s story….

 

On April 20, 2007, I noticed my son’s first facial tic. He was four at the time. After I looked up tics on the internet, I found this site and realized that that throat clearing and coughing he was experiencing could also be a tic. When I consulted with my pediatrician, he diagnosed my son with transient tic disorder. His motor tics changed over the next few months to smiley tics, eye tics, shoulder tic, head bobbing tics, ect. I also should mention that we do not have a family history of tics.

 

Over the course of about four months, I tried a number of suggestions that I found here:

 

- Bought and read Sheila’s book (this has been a great source of inspiration)

- Studied this website and looked for anything that sounded like it applied to my son

- Changed his multi-vitamin (Kangavites) – it appears to have no die and junk

- Went organic with foods wherever possible

- Started Kids Calm – 1 tsp a day (his neuro said 250 mg b/n supps and multi vitamin)

- Phased out flonaise and claritan (he was taking these for what we thought were allergy issues)

- Had scratch test performed – he’s allergic to our cat and dust (my son had just turned 5 or I would have consider a test that requires a blood draw)

- Changed filters in house- we do this every 3 months anyway, Cleaned carpets, got Allergy free pillow/mattress cover

- Epsom salt bath – give every other night

- Epsom Cream- used when he had shoulder tics

- Use ALL free and Clear with no dryer sheets

- Went to a Jason shampoo/wash and dye free/fragrance free hand soap

- Implemented Feingold (with a few minor infractions) and then after observing that Milk could be an issue for him by patterns noticed in journal eliminated Casein

- Screens- for some time, we eliminated screens. Tics picked up significantly while watching screens. My son can now tolerate screens without a problem since we took casein away although we still watch TV in moderation.

- Journal: I’ve expanded my journaling to include a rating of the tics each day, notes on behavior and a list of what he eats and may be exposed to

- I emailed a DAN Rescue Angel in my area to ask about suggestions on environmental doctors. I found this on the DAN website. She was very helpful to making recommendations which included the nutritionalist (Dana Laake) who wrote the cookbook I recommended. She also shared with me that her daughter had tics and that a casein free- gluten free diet was helpful for her entire family in terms of helping them heal. This helped me make the connection that dairy could be an issue for my son.

 

Of these things, what I believe is his major trigger is casein. About a month ago, we implemented a casein free diet. We also cut back significantly (but have not completely eliminated) gluten. I saw a reduction in the frequency and intensity of his motor tics within days when we removed casein. Over the next few weeks, we continued to see a reduction. My son is now tic free for the first time since April. I also saw an immediate marked improvement in his behavior, the richness of his conversations and his attentiveness. His very light OCD behaviors are also gone and the very dark circles under his eyes have lightened. this all happened the week before he started Kindergarten, and it was a true blessing.

 

During family dinners, we now all eat casein free. I’ve learned to cook with milk substitutes. An aid for me was bought a book called “The Kid Friendly ADHD & Autism cookbook – the ultimate guide to gluten-free, casein-free diet.” This book has great recipes and also has an interesting section on why the diet works for many kids in the autistic spectrum. I also researched casein free diet on the internet and came up with many substitutes to my son’s favorite foods so that it makes the diet completely livable.

 

What I hope you’ll see in reading my post is the importance of keeping a journal and keeping the faith. There were times I was just beside myself with frustration but the one thing I knew I could do was take good notes and look for patterns in my observations. I poured my energy into this. In my daily journal, I noted what my son ate, what he was exposed to, his stress level and gave a ranking to both verbal and motor tics. After some time, I began to see patterns and clues as to what I should challenge. When I finally started to make sense of this journal was when I challenged myself to look over what I had noticed in different ways. For example, my son ate Popeyees chicken one evening and woke up the next day with his worst day of body tics. I was too busy drawing a conclusion about the MSG in the chicken to consider that the 4 bowls of cereal and 2 glasses of milk that same day could have been the antagonist. Once I made the connection that dairy could be a trigger for him, I saw a pattern of heavy milk consumption days followed by days of very bad tics.

 

We’ve been on quite a journey and while I know it is not over, I am finally sleeping again and hope to help someone else with what we have learned so far.

 

Keep the Faith-

Q’s Mom

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Pat,

 

My son does not have asthma but did have some croup each winter. The Flonase was for fluid in his ears and the Claritan was suggested by our pediatrician for his allergy symptoms during pollen season. It did seem to help with the throat clearing.

 

As far as wax and wane - he tic'd non-stop from April until August. The frequency, intensity and types of tics varied, but I think this had more to do with what he was eating than a wax and wane. In most cases, my theory is that I can tie the worst periods to food - i.e. the last week of school parties and ice cream. At the beginning of August, the tics slowed significantly, but I believe this was due to the multiple things we had implemented as opposed to it just being the cycle.

 

Thanks for the well wishes. Time will tell how this plays out but at least for now, we've found something that works!

 

Q's Mom

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Q's mom,

thanks for taking the time to share your son's history. "keep the faith"....... I am trying, but not feeling particularly confident these days....

 

May I ask what you have done regarding your cat? Was it a mild or moderate allergy, and how much do you think that factors in? We have a cat and my son showed a moderate allergy on intradermal testing, and I have been trying quercetin which is supposed to be a natural antihistamine, but not really seeing anything dramatic (he has a throaty sound, and sometimes 'ahuh" grunt). (the DAN doctor gave a nasal spray last year which is supposed to be a neutralizer to the things he is allergic to but again, I didn't feel it had any real effect especially on the vocal). I also do much of what you have stated regarding allergy precautions and don't give milk at all, but wondering how difficult it is to cut out hidden dairy in products? We already have to watch corn and yeast........

 

Thanks for your help and so glad your perseverence has paid off, appreciate your sharing.

Faith

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Thank you for sharing your story. So much of it mirrors my own with my 5 yr old son. He started with vocal and motor tics last April and has ticced nonstop for most of the summer. We've cleaned up his diet and done Feingold (strictly for about 3 weeks and now just try to keep things whole and organic). I've kept a journal but was never able to see any patterns. We are currently waiting for some test results that we did last week to give us some new direction with supplements and dietary changes. He was doing really well for the past 2-3 weeks and all of a sudden, his vocals started up again yesterday.

 

Thank you for your post and best wishes to you and Q for continued health. I really needed to read this today as I'm feeling really discouraged right now and wondering if there really is a way to control these tics.

 

tlk

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Faith,

 

The cat is a touchy issue, and we are trying to get a handle on how she is effecting my son. She's been with us for about 13 years. So, you can imagine my reaction to his scratch test! Right now the cat is confined to our unfinished basement until until we can figure this out. Since my son also has a dust allergy, we have vaccum really well several times a week. We also vacummed the furniture really well in places where the cat used to lay.

 

As far as dairy, I've gotten better at administering this diet over the past month and understanding how to read labels. I shop Whole Foods and they have a section on their website for allergy diets - I printed this off along with the gluten free shopping list (it is about 15 pages for each diet) and spent about 3 hours in Whole Foods on my first visit. I'm also doing Feingold (with a few infractions) and then layered the casein free on top. The Feingold website for members also helped me get started - They post lots of "safe" grocery lists. getting through the first few weeks, were the hardest part. Now, shopping is a lot easier because I know what brands I can use, and I buy those.

 

The cookbook I mentioned is giving me lots of great new recipies that the whole family is enjoying. I'm buying very little processed food and instead making my own. It is time consuming, but worth it for us. Through trial and error, we've found things that my son enjoys. He really like Rice Dream Ice Cream, we use rice and almond milk in recipies, and he eats a huge variety of fruit and vegetables. I've replaced coconut oil for butter which was a great find for us too.

 

For birthday parties, I've been taking my own ice cream (but I do let him have a peice of cake) and goodie bag items. Same with playdates and trips to grandmoms- I send "safe" food. I also have a shelf of "safe" foods just for my son in the frig and the pantry. In the frig, I also have a reminder list of the foods and juices that are safe. This way I know he is not going to be served something by accident by dad, grandma, or a babysitter.

 

If you had asked me a month ago, I could not have imagined that my son would sit still at dinner and not tic. I'm just hoping that the casein free proves to be a long term fix.

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trubiano

 

the magnesium sulfate cream is made by Kirkman Labs and does have a beneficial effect tho, just from my view, nowhere near the effect of the epsom salts baths.

but it is a useful aid for those times when a tub is not possible. It also really soothes aches and pains, and does have that good magnesium calming effect

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We used the epsom cream on my son's shoulders when he had a very bad shoulder tic. This seemed to help (I could not get him to soak his shoulders in the tub.) The epsom salt baths we use regularly, but the cream just "as needed" on the shoulders. It is also expensive, so you'd want to use it sparingly.

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Q's mom,

 

You are a wonderful mother, and your child is soooo lucky for your diligence. You know you have given him the opportunity for an easier life. Tics are stressful on those young bodies!

 

It is wonderful that you posted what worked for you. It is interesting to see how much casein has affected a number of kids with tics.

 

I love what you did, it is completely awesome!!!!

 

I hope your story is now an inspiration to others, just as you learned from others.

 

'Pay it forward', just like in the movie I loved

 

Best,

Claire

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Q's Mom -

Thank you for the post. I am new here as well. My son is 8 and has just started with an arm tic - doctor said they could not diagnose because it had to last for one year and had to be combined with other tics, etc. My wife and I went to this site and immediately started on crash diets - has been one week tomorrow. I was hoping you could tell me how you approached the diet. My son has been tested for allergies (none) and does not have any of the other mentioned conditions - such as ADHD or OCD. We have started multiple diets in unison (may be a problem) - we eliminated what he ate the most of (white bread, milk, and artificial add/pres.) - so we are following the Glutin Free / Caesin Free, Wheat Free, Dairy Free (I know some of these are the same) and Yeast Free. I think we have gone overboard and have see no change - again only been one week.

Can you tell me how you went about choosing what to eliminate, etc. - did you work with a nutritionist? Please help (from your experience) on how to approach..........or anyone else that see's this thread. I don't want to make things worse or aggrevate the condition. I would classify the tics (at this point) as mild - and really on the one in his shoulder (spasm in his upper arm - bicep/tricep).

 

Thank you

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Hi Help4Matt,

 

From a diet perspective, I joined/implemented Feingold. This cuts out dyes and junk in foods. If you sign up, they will send you a catalog of "approved" foods by brand. After doing Feingold for a month or so, I observed a trend (i kept a journal) that milk might be an issue for my son. So, I then eliminated Casein. From that I saw a difference within a few days. For us, over the course of about a month, the tics got lighter and fewer each week. By default, I was eliminating gluten because many of the products I was buying are GFCF too. I've read that if your child has a gluten issue, it can take some time for it to clear out of their system.

 

Since my son is only 5, i did have him scratch tested and milk, wheat allergies did NOT show up. But it was clear when we eliminated them that his body was reacting to casein for sure. I'm curious, what kind of allergy testing did you have done? Are you sure you have a yeast problem?

 

At this point, I've continued to eliminate more and more gluten as I'm learning to cook. I also have gotten better at reading labels so I don't create an infraction.

 

I have been in touch with my pediatrician on the supps - and have my son on Kid's Calm (which I believe is really helping him) and a calcium supp. My son responded so qucikly to the dairy elimination that I have not taken him to a nutritionalist yet, but have located a really good one in my area and have corresponded with her. I bought the cookbook she wrote on GFCF diet which has given me some great recipies and some additional tips on how to administer the diet.

 

I also wanted to add to make things easier for my son, we are all eating the same foods during meals so he does not feel singled out. I've actually found some great recipies that everyone is enjoying and the diet (which was very overwhleming two months ago) is now becoming part of life.

 

I applaud you for going right into the diet changes. They key will be to find what the triggers are for your child. In the end, it may be something unexpected so my best advice is to keep good notes and not just on food. You'll find the answers. It just may take time. Hang in there ...

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