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robinjax

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My son developed tics a couple of weeks before his 4th birthday and they have come and gone over thepast year. It started with eyes rolling back in the head the day he was hit in the head with a tire swing. The next few days the eye rolling moved on to shoulder shrugging to throat clearing all within a 2 week period. After the first couple of days, we took him to the ER because it seemed so abnormal and they did blood tests, cat scans, etc. and were told nothing was wrong. The last year we have seen neurologists, child psycologists, etc etc and have gotten nowhere. One children's hospital had a PANDAS test done but it was part of a PANDAS study not necessarily a test (as they told us). The doctor we spoke to with the most knowledge (and interest) said that a TS diagnosis could not be made until he has one particular tic for at least a year (non stop) which was actually encouraging because they(tics) changed at such a rapid pace but after reading this forum, that seems to be untrue.

 

I have read this forum for some time now and have been encouraged but at the same time, I feel absolutely helpless because I don't know where to start with identifying tic triggers. My wife and I both work 40+ hours a week and are just worn out with work and then trying to keep our son calm and in bed by midnight. He has taken quite a bit of dimetapp to try and help a runny nose (that develops into a tic of constant sniffling) and this is probably doing more harm than good but we don't know what to do to get him to bed and to calm his tics that get rampant when he gets excited.

 

I want to try the magnesium supplements but he has become very astute at identifying medicine mixed in with juice or food. Most of the people on this board seem to have older kids that will change their diet or take pills (unwittingly sometimes) but I have a kid that only eats about 4 things and will not try any new foods (throws an absolute tantrum to the point of tears) and will not take medicine that isn't grape dimetapp ^_^ . I don't even know where to begin with this process, although I have bought Sheila's book so I guess that is a start. I hate to admit the fact that I cry every night thinking about what his future may hold since kids in his pre-k class are already making fun of him ("Daddy nobody will be my friend because I make noises" B) ). It consumes my thoughts every day and I cannot focus on anything these days...

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hello robinjax and welcome B)

 

we can all sympathise with how you are feeling as at one point or another we have all been through those emotions ourselves

 

yet, as most of us can also testify, things can and do get better for many people with tics, whether naturally or with specific treatments that help

 

most of our members are still away for the holidays, and so I am sure you will get more input in about a weeks time, however I did want to point out something your docotr told you that is absolutely INCORRECT

 

you quote the doc as telling you that

The doctor we spoke to with the most knowledge (and interest) said that a TS diagnosis could not be made until he has one particular tic for at least a year (non stop)

 

well....as you later remarked, that is NOT the case

TS tics wax and wane characteristically and different tics emerge either along with pre-existant ones or in their place.

One particular tic remaining consistently would therefore be more likely to suggest it is NOT TS

 

The standard dx for TS is that both motor and vocal tics be present for a year, with waxing and waning

 

I am so glad you have Sheila's book and hope it will give you much insight and inspiration. Our story is in there too.

 

Just remember that, whether this is TS or some other tic disorder, your precious son needs for you to focus on him beyond the tics. The more we focus on the tics, the more the kids pick it up and then they sense our anxiety and sorrow and it causes stress for them which in turn causes more tics ^_^

It is hard as a parent to appear nonchalant about something that we are worried about, but from experience I know that one needs to wait for them to be either out or asleep to release the feelings.

 

Just remember too that for a vast majority of kids, whether with TS or other tic disorders, the tics naturally reduce as they get older and past the "hormonal years"

 

In terms of school, the Tourette Syndrome Association has some excellent booklets and videos that can be used in school to educate both the teachers and the classmates about TS and so help to foster more acceptance and understanding

http://www.tsa-usa.org

 

I dont know if you have found Leslie Packer's very informative site on TS yet

http://www.tourettesyndrome.net

 

in the meantime, honestly, i would try to get away from dimetapp!! loaded with coloring and stuff that is just a no-no IMHO

 

if he likes grape, maybe try to get the supplements in to him by getting them in powdered form and dissolve in Welch's grape juice?

 

Also, to calm him at night, i highly recommend the Epsom Salt baths.....2 cups of epsom salts in a tub of warm water with a 20-30 min soak works wonders for relaxation, and allows the magnesium salts to be absorbed

 

lots more to pass on to you, but i need to start working so there is hopefully some stuff for you to take in for now

 

all the best

Cheri

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Hi Robinjax,

 

I just wanted to also say that you should really try to get your son off of the dimetapp. As a child, I took dimetapp night after night. My doctor didn't like the fact that it was a decongestant. Dimetapp was also a tic trigger for me, and my doctor at the time had my parents switch to Benadryl.

 

Carolyn

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robinjax,

 

I had read your post this morning, and wanted to give you the links for a product called Natural Calm. Then I see, Patty and Cum Passus discussing the same thing on another thread. ^_^

 

http://www.shopping.com/xDN?SEO=nutrition-...KW=natural+calm

http://www.thegoodsleepstore.com/insomnia_...s_quickshop.htm

 

If you decide to use this product, you may want to use, at least a good multivitamin too. Something with at a least a little calcuim, to help with the mag. absorbtion. If you are able to use it, long term, I think you will want to find a form of calcium to supplement with also.

 

The reason that I thought it might be helpful, is because it's made to be dissolved in water, and should be very easy to disguise in juice. I have not used it, but have read many posts, where it was helpful to someones child. It comes in a raspberry flavor and also lemon.

 

Magnesium is usually very calming. It very well, may help your son sleep, if given, maybe an hour before bedtime. You can also split it up during the day. If your son tends to have melt downs, at any particular time, you might want to schedule a dose for around that time.

 

I had recently told my oldest son, that I wanted him to taper off of his supplements for a few days. We have been trying to control an acid reflux type of thing. He said, "I'll back off everything, but the mag. taurate, I have to have that." He also, does not like to take mag. during the day, as he says, it makes him too tired. It's always good, to hear direct feedback from your child.

We started a probiotic again, and I bought some aloe vera water, and had him start a minimal amt. of digestive enzymes. Two days later, no acid problem. He is taking all of his supplements again. Don't have any idea, what helped so quickly???? Sorry to get off topic.

 

Anyway, I wanted to ask, if you would share what types of foods that your son will eat?

 

Is it crackers, pretzils, potatoes, french fries by any chance (carb. foods)? Or smooth foods, like pudding, yogurt (dairy). I think with the limited eaters, a big help, is to know if it's a sensory problem, or if candida overgrowth, may be dictating food choices. Does he crave sweets?

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I strongly suggest getting an alternative physician to help guide you through this.

 

For the bedtime issue, our alt. physician had us use Melatonin, which is a hormone the body naturally produces. He said there is no feedback cycle. For my 10 year old at the time, we dissolve .25 mg, or 1/4 capsule in a little water left no real taste (you can try it yourself).

 

It is a very powerful antioxidant and can also help with the oxidative stress that so many tic syndrome kids have. It worked miracles for us, and he doesn't need it anymore. But I would ONLY do it with an alternative physician's guidance, esp. since it is a hormone. People here know lots of things for sleep... tic syndromes and sleep issues can go hand in hand. Do you leave a night light on? That reduces the body's ability to produce its own melatonin.

 

The runny nose, that indicates allergies...

 

It is of concern that your neurologist knows so little about TS that he doesn't understand the common diagnosis criteria. However, I think it is common to misdiagnose TS anyway (with no family history), and am not big on the label at this age.

 

Good luck...this does take time, there is no denying that.

 

And if you have followed this board, you probably know my sentiments about the tic trigger of sitting in front of a large screen TV/computer, especially with a CRT screen.

 

Claire

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Thank You all for your respones, I am really excited to have such a helpful forum / group of people that understand what we are going through. I must say I am amazed that this is the most informative and most supportive group I have found, why is there so much resistance in the medical community? I guess this is a rhetorical question as they are so willing to write a prescription to keep our kids subdued, really sad I must say but God bless you all.

 

I am embarrased to say the food he eats are mac and cheese, PB and J, granola bars, grilled cheese, hot dogs. I know I know, we need to see if he is allergic to the dairy but he really won't eat much of anything, very particular and we are TRYING :P. I bought the epsom salts to try the bath time (which he loves).

 

I should also mention that we have taken in a 9 year old girl 2 years ago and they compete for attention which probably contributes to the stress/tics but how do you combat that :) ???

 

If anyone could be specific about foods in terms of name brands, it would be much appreciated. I have found the posts very helpful but I am so ignorant, I am unsure of where to start with grocery shopping. Also I know it is a touchy subject but if anyone could suggest a way to go about finding a doctor in our area (Florida) that is receptive to this kind of treatment, again it would be much appreciated.

 

Again, thank you all, you are an inspiration to a truly depressed father who is distraught and scared for my son.

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robinjax,

 

Welcome to the forum. When we first started food elimination, i cried because there weren't much my son could eat from your conventional grocery stores. It was so hard. But overtime, we found alternatives. So what exactly are you looking for? You mentioned you needed some food brands.

 

It would be easier to help if you can tell us what you are avoiding. In the meantime, i would suggest you stay away from food additives and perservatives, MSG, food coloring and corn syrup, as this is a tic trigger for some and also it is not good for you anyways.

 

Another easy thing to do now is to start eating organic vegetable, fruit and meat. It is not alway feasible for us to eat organic meat because of cost, so we alternate between natural meat and organic meat.

 

Hope this helps.

 

Patty

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robinjax

 

If you have any Whole Foods or Wild Oats grocery stores nearby they are great. They have a list of dairy free foods, etc.

 

Sheila has a topic posted called finding medical help which may be helpful when looking for a doctor that understands this stuff. Here's the link: http://www.latitudes.org/forums/index.php?showtopic=565

 

I don't live in Florida, but travel to see Dr. Robbins in south Florida which is listed on the Defeat Autism Now list. He is a very good doctor in my opinion. Chemar may also have some Florida doctor suggestions.

 

Carolyn

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Robinjax,

 

Glad your here this is a really great place to get support and sometimes just to feel you are in good company with people who really understand how you are feeling. I'm in the learning stage too, and I remember walking down the isles of the store so upset I didn't know where to start. I couldn't hold in the tears, but I can tell you it will get easier. I 'm not sure but maybe someone else can correct me, but there is an all beef hotdog with no nitrates I have seen in the health food store I believe it is not prossesed meat. I hope someone can let us know if that is an o.k. hotdog change you could try. I only tried them once the kids said they couldn't tell any difference in the taste. My son's tics were so bad at the time I didn't notice any worse tics from eating them.

Whole Foods is a great place too.

 

I really fell apart last year. I think it was because my son went to a private school K-2nd then I homeschooled him 3rd- 5th and last year was his first year in public school. Every negative thought you could have... I had it. Plus we had a really good time together homeschooling so I was very close to him and this really tugged on my heartstrings. God Bless, He will get you through this.

 

C.P.

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hi robinjax, I would echo what the others have said regarding the Dimetapp and any foods with artificial colors, flavors, and preservatives. In our family, those have been our biggest triggers.

If your son is eating a "popular" brand of Mac 'n Cheese, chances are it contains some Yellow #5, Red #40, etc... There are brands of all-natural mac 'n cheese that do not contain artificial colors or preservatives (e.g., Annie's brands).

If your son eats colored cereals, like Trix, Fruit Loops, etc, switch to some organic brands... may not taste as good, but they won't have those colors. Or change to pancakes, eggs, etc. We use Aunt Jemima original mix... just add milk, oil, and egg.

If he eats candies like M and M's, Skittles, Twizzlers, Starburst, etc..., try replacing them with some all-natural candies, or at least some that aren't colored.

And watch out for "fruit drinks" that aren't really fruit. For example, use Juicy Juice - not Hawaiian Puch.

 

If your son is indeed reacting to these kinds of food additives, it might take several weeks of eliminating them before you notice any improvement. On the other hand, it might be very soon and it might be very dramatic (as it was in our case).

 

Cookies and ice creams can also be contaminated with these additives. Look for brands that do not list in their ingredients things like "Red #40", Yellow #<>, Blue #<>, etc..., or preservatives like BHA, BHT, and TBHQ. "Vanillin" is an artificial flavor... look for items that say "vanilla".

 

Like Carolyn said, if you can shop at a Whole Foods store, just about anything they sell would be void of any of these addtives.

 

Glad you found this board... wishing you and your family the best.

Jeff

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C.P.

 

There are actually a few brands out there for hot dog that do not have nitrates or nitrites. I think i have tried just about all. One of the brands is Applegate, all beef and probably tasted a little better than the other brands that i have tried.

 

The best tasting one is from Niman Ranch fearless, uncured franks. However, it is beef & pork. I highly recommend this one because it is so yummy, but alittle bit salty. NR also has uncured bacon and ham. You can buy it from Trader Joe. Whole Food does not carry Niman Ranch products.

 

Also, there are deli meat that do not have Nitrates or Nitrites at Trader Joes and Whole Foods. Boar's Head is another brand that makes Nitrates or Nitrites free deli meat.

 

Patty

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I know how you feel, honestly, when our son had his first tics in Feb 06 just after he turned 7, they eventually tore me apart to desperation like you. The first sign was heavy eye blinking, that did not bother me too much, but then he started shoulder jerking one Saturday in May, I took him to ER and the on call Pediatrician did all the tests as well. They got better, but came on again in August of this year and got very bad in November. It affected me to the point that my work was affected and I was becoming very depressed and angry. Mainly because the doctors said nothing was wrong, and even though he was happy, it made me sick inside to see him jerk his body around. For the last couple weeks he has gotten better, he is on Magnessium and Calcium as well as Attentive Child by Source Naturals as well as a b-complex. We also took away TV for a week. I can't tell you what made him better totally, but now he tics so little that I just thank God continuously. He will tic very slightly when watching TV, but I don't even care. I shed so many tears over him and know it did him and me and everyone else around me no good at all.

I would try every trick to get him on Magnessium and Calcium. The Attentive child is a small capsule, so he may swallow that. All I can say is he will get better, it is NOT TS for sure. Try no TV as well for a week. We are also getting him tested for alergies next month. Hang in there

Lenny

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Thank You all for your suggestions and advice. I read all the posts and just have not had a chance to respond. Unfortunately my son's tics have been pretty bad since Christmas but I did start the epsom salt baths and am still trying to make a gradual diet change. I haven't seen a difference but I know there is no quick fix and it takes time. Unfortunately, patience is not a virtue that I possess, which is part of the frustration with my son. I know this is one of my true weaknesses and I have failed my son in that respect, sometimes my frustration comes out with me yelling at him and I am so ashamed of that immense character flaw.

 

I have heard people indicate that there is an actual PANDAS test but the specialist I went to see at Shands said that there was not an actual PANDAS test, just "studies", can someone advise me on this? From everything I have read, his symptoms are identical to so many of the case studies I have read on PANDAS. Hope you all have a great NEW YEAR and a great 2007. Again thanks for all your support, advice, and being a soundboard for me and everybody else on this board.

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