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My first post: ds 8


Cj60

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Hello, and thank you all. I have found great solace in this forum, and appreciate everyone's willingness to share and help others who are trying to sort things out for themselves and for their children.

 

Our story:

My son, now 8.5, first manifested tic behavior (he pulled at his eyelashes) in March, at age 4. We took him first to a ped. neur. (pn), who diagnosed mild ocd and recommended an SSRI reuptake if symptoms worsened. We took him second to a ped. psych., who diagnosed differently: transient complex motor tics.

 

The tic went away completely, with no meds, within 5 or 6 months of showing up.

 

This year, again in March, my son developed a neck jerk. It was prominent enough that his teacher noticed. This summer, he has developed arm jerks as well. So we took him to a pn, a different one this time, but with the expectation that the standard line would still apply. She did not let us down.

 

In the meantime, I had bought Sheila's book, and found this site, and have done lots of thinking (i.e., worrying and obssessing). While we are waiting for our appointment with an alternative practice, I have taken the following steps.

 

1) Eliminated dairy. Ds already showed signs of lactose intolerance. While not easy, this hasn't been too hard yet;

2) Eliminated HFCS (hard, I always have to have my reading glasses now) and cut way back on sugary foods (very very hard and demoralizing);

3) Started magnesium supplement (currently Kids Calm);

4) Started natural multi vitamins, with all the Bs (we had never been good with vitamins), but not Zinc which is a concern for me;

5) Given occasional flaxseed oil supplement;

 

What I am considering:

 

1) a probiotic;

2) subbing out the kids multi vit for another I saw referenced here (Jarrow Easy something), which has the zinc, as well as other goodies;

3) Royal jelly (not at all sure whether this is appropriate);

4) ...?

 

Before proceeding with questions that I hope some of you can chime in on, I'd like to give a little more background on my son:

 

1) Other tics I have noticed over the past two weeks: some of the classic facial tics, a breathing tic, finger movements, no obvious vocal tics yet, but I'm guessing there will be eventually.

2) His tics are most notable when he's in a state of tedium, and in the evening.

3) He has never displayed behavioral or learning problems. He has always been happy, social, bright, and enjoyed school.

4) His cousin, my nephew, now 18 and about to leave for college, was diagnosed with TS around 4 or 5 yrs. ago. I don't chat often with my sister, and never about her son's TS (I'm thinking this might change soon), but he has seemed to manage well enough to be an outstanding soccer player with a scholarship to a good college.

 

While I have been concerned for some time now, it was the visit with the pn (dagnosis of TS, excepting that 12 months have yet to elapse), and her attitude (drugs are your only recourse, alternative options are purely psychological), that threw me over the edge. Last night was the first night I've slept more than 4 or 5 hrs. in a week. Haven't eaten well. Classic anxiety depression stuff. But I hope to be turning the corner, realizing, as I read in an earlier post, that this isn't about me, it's about him.

 

Anyhow, here are my biggest doubts. Please feel free to respond to them if you are able.

 

1) Can magnesium exacerbate tic symptoms? Sometimes I get the sense that sense that his breathing and facial tics have increased with it. But I also sense that his neck jerks have decreased. His arm jerks are the most constant.

 

2) What is the realtionship between chlorine and tics? This past weekend, we had a very active day. Bike riding & swimming during the day, miniature golf / hitting golf balls after dinner. The miniature golf was a last minute substitution for his regular roller blading, because I screwed up the times. At miniature golf, his arm and neck jerks were noticeable to standersby (this was a first for me). They even interfered with his swinging the golf club on the range. I don't know whether to consider the afternoon's chlorine as a trigger (he was not ticcing while we were at the pool, he was relaxed and enjoying himself), or simply chalk it up to over exertion. After the golf when we were in the car heading back home, and back home relaxed and watching tv, his tics were greatly reduced.

 

3) Am I going overboard cutting out dairy without a doctor's recommendation?

 

4) Are all sugars bad, or just HFCS and refined sugar? I'm cutting back on my own, but can't imagine eliminating it all the way.

 

5) What about dark chocolate, and chocolate soy milk?

 

6) Should I try a probiotic on my own? (This is different than an anti yeast agent, no?)

 

7) Is the Jarrow easy mulit mix ok for an 8 yr. old boy (@65 lbs.)?

 

 

As a final note, we have only been experimenting for a week or so, but nothing we have done so far has shown any noticeable results. The onset of his most recent symptoms (facial and breathing tics) was pretty quick (over the ocurse of the past two weeks or so) and have not improved with the elimination of dairy or the magnesium supplement. I'm most suspicious of the effect of sugar, but can't even be sure of that.

 

Any hints or observations are more than welcome!

 

THANK YOU ALL!

 

Cj60

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[quote name='Cj60' date='10 August 2010 - 02:51 PM' timestamp='1281469917' post=

 

I'm new to the forum but have read on it for some time. I also have a son (9) with similar issues. He has never properly been diagnosed but we are quite confident we are dealing with chronic vocal tic disorder at the very least TS possibly. He was always sensitive to certain noises and textures, very tactile but nothing we were concerned with. Around the age of 6, we realized that his "habits" were increasing and it was impossible to pretend that the noises he was making were him just being a boy. At this time I came across this site and others alike and had my aha moment, I finally knew what this was. Very scary but also explained for my husband his own childhood "habits". I began exhaustively looking for a "cure" as I'm sure we all have, and realized although this wasn't a sure fix there were things we could proactively do. This also gave us a way to explain to our son that we finally understood and although we probably wouldn't cure this, there was hope in alleviating symptoms. ( I had recently heard my son begging that God would make this all go away) At this time his tics consisted of coughing, throat clearing , sniffing and others. The coughing in particular was driving him crazy! His grades were dropping and other people were asking him constantly if he had a bad cold, or allergies etc. So to cut to the chase, we began an elimination diet and have had good results removing wheat, milk,soy artificials of any kind, preservatives etc. WE also have have a daily regiment of Acidophilus, Vitamin D, Omega 3, massaging his neck at night with castor oil. He does well generally but if he has a virus, or is exposed to chemicals, in laundry, dishwasher, candles, CHLORINE, etc. his tics increase regardless of food. I am sorry you are feeling so overwhelmed, I completely get it. Within the last two weeks or so I have been fighting with my self to admit that my 7 year old daughter is also presenting with tics. Different than my son. His are mostly resperatory, coughs, grunts, squeals. Hers started in retrospect with snapping her teeth together(closed mouth) so easy to ignore, but has recently started sniffing and and making a small raspberry kind of sound. Trying to keep positive but hard enough keeping track of one childs food sensitivities and what is causing what. You can drive yourself crazy! In my experience if it niggles at the back of your mind like the questions you've asked like the chlorine, usually you're on the right track. My son was having a breathing tic I had never heard before after driving myself nuts reading ingredients and racking my brain for what was different we realized he'd been swimming everyday at his friends. We asked him to avoid the pool for a few days and the tics disappeared, assuming the chlorine was the issue. Sometimes you find the answers sometimes you just have take a breath and realize you can only do so much. If you're like me you feel it personally, like you should be able to do more and fix this for your child but in my more sane moments I know I can only do what I can do. Be proud of yourself for persevering thus far, we all know it is not easy. It's much easier to throw in the towel, hide your head in the sand but even the smallest victory makes it worth it. Didn't answer most of your questions sorry but wanted to let you know there's someone else who "gets it".

"

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I'm new to the forum but have read on it for some time. I also have a son (9) with similar issues. He has never properly been diagnosed but we are quite confident we are dealing with chronic vocal tic disorder at the very least TS possibly. He was always sensitive to certain noises and textures, very tactile but nothing we were concerned with. Around the age of 6, we realized that his "habits" were increasing and it was impossible to pretend that the noises he was making were him just being a boy. At this time I came across this site and others alike and had my aha moment, I finally knew what this was. Very scary but also explained for my husband his own childhood "habits". I began exhaustively looking for a "cure" as I'm sure we all have, and realized although this wasn't a sure fix there were things we could proactively do. This also gave us a way to explain to our son that we finally understood and although we probably wouldn't cure this, there was hope in alleviating symptoms. ( I had recently heard my son begging that God would make this all go away) At this time his tics consisted of coughing, throat clearing , sniffing and others. The coughing in particular was driving him crazy! His grades were dropping and other people were asking him constantly if he had a bad cold, or allergies etc. So to cut to the chase, we began an elimination diet and have had good results removing wheat, milk,soy artificials of any kind, preservatives etc. WE also have have a daily regiment of Acidophilus, Vitamin D, Omega 3, massaging his neck at night with castor oil. He does well generally but if he has a virus, or is exposed to chemicals, in laundry, dishwasher, candles, CHLORINE, etc. his tics increase regardless of food. I am sorry you are feeling so overwhelmed, I completely get it. Within the last two weeks or so I have been fighting with my self to admit that my 7 year old daughter is also presenting with tics. Different than my son. His are mostly resperatory, coughs, grunts, squeals. Hers started in retrospect with snapping her teeth together(closed mouth) so easy to ignore, but has recently started sniffing and and making a small raspberry kind of sound. Trying to keep positive but hard enough keeping track of one childs food sensitivities and what is causing what. You can drive yourself crazy! In my experience if it niggles at the back of your mind like the questions you've asked like the chlorine, usually you're on the right track. My son was having a breathing tic I had never heard before after driving myself nuts reading ingredients and racking my brain for what was different we realized he'd been swimming everyday at his friends. We asked him to avoid the pool for a few days and the tics disappeared, assuming the chlorine was the issue. Sometimes you find the answers sometimes you just have take a breath and realize you can only do so much. If you're like me you feel it personally, like you should be able to do more and fix this for your child but in my more sane moments I know I can only do what I can do. Be proud of yourself for persevering thus far, we all know it is not easy. It's much easier to throw in the towel, hide your head in the sand but even the smallest victory makes it worth it. Didn't answer most of your questions sorry but wanted to let you know there's someone else who "gets it".

"

 

Ditto on everything she said. Well, not everything but in general anyway. We've run the gamut of trial and error only to find that we do OK on just minimal supplements. If we want to be perfect and have NO tics at all, then I'd really have to get serious and cut stuff out. My AHA moment came when ds ticced like crazy in a hotel room that smelled musty and moldy. He exploded with weird tics and we haven't seen them since this trip so I finally said: It's allergy related! Elevated histamines really trigger his tics but I have seen no change while he was on allergy meds so again, I was left wondering, LOL! Hey, at least they keep life interesting. What would we do without this stuff to consume all our free time? I mean, who really has time for the beach right? HAHA! Just kidding. As for chlorine: we have a pool and we've been to quite a few waterparks this summer and I've personally seen no correlation between tics and the chlorine. Yet, many folks see a totally direct relationship between chlorine and tics and that's why this is such an individual thing. God did not create all their little brains to have the exact chemical makeup or neuro sensitivities so what may work for one, may NOT work for another. Talk about frustating to say the least. The best we can do is be the best moms we can be and be an advocate for our children.

 

B

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Hi and welcome

 

looks like you are off to a good start

 

to answer your questions

 

1) Can magnesium exacerbate tic symptoms? Sometimes I get the sense that sense that his breathing and facial tics have increased with it. But I also sense that his neck jerks have decreased. His arm jerks are the most constant.

It should not as long as it has no additives that may be triggering. Are you using the Lids Calm that is just magnesium?

 

 

 

2) What is the realtionship between chlorine and tics? This past weekend, we had a very active day. Bike riding & swimming during the day, miniature golf / hitting golf balls after dinner. The miniature golf was a last minute substitution for his regular roller blading, because I screwed up the times. At miniature golf, his arm and neck jerks were noticeable to standersby (this was a first for me). They even interfered with his swinging the golf club on the range. I don't know whether to consider the afternoon's chlorine as a trigger (he was not ticcing while we were at the pool, he was relaxed and enjoying himself), or simply chalk it up to over exertion. After the golf when we were in the car heading back home, and back home relaxed and watching tv, his tics were greatly reduced.

Chlorine is known to be a big tic trigger

 

3) Am I going overboard cutting out dairy without a doctor's recommendation?

it cant hurt to eliminate dairy to see if that helps, but is an unnecessary elimination if your child is not reactive to it

 

4) Are all sugars bad, or just HFCS and refined sugar? I'm cutting back on my own, but can't imagine eliminating it all the way.

we use turbinado sugar, honey and maple syrup with no problem

 

5) What about dark chocolate, and chocolate soy milk?

Dark choc has health benefits in moderation, provided one gets pure dark without additives

Some people are allergic/reactive to soy so that depends. Also would depend on how the soy milk is being flavored...real choc or artificial

 

6) Should I try a probiotic on my own? (This is different than an anti yeast agent, no?)

Probiotics are usually a good idea but I personally feel they should be food sourced rather than supplements ie best to use plain kefir or pure organic yoghurt. They do help with" yeast " ie candida, but are not able on their own to eliminate it

 

7) Is the Jarrow easy mulit mix ok for an 8 yr. old boy (@65 lbs.)?

sadly Jarrow has discontinued their multi mix

They do have a similar pill form but it is high potency and has a lot of additional stuff in it which may be generally good but ......

 

 

re Royal Jelly...it is good to add only if no allergy to bee products and primarily as a source of B vitamins and other nutrients. My son is currently using it, along with specialized diet, as his "multi"

 

zinc is very important to get in enough either via diet or supplemental form but if you supplement, be sure to use chelated zinc like the opti by NOW

 

hope that helps...this is based on our perspective so your child's individual needs may differ

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Mommyfor4, ilovedogs, Chemar: thank you very much for taking the time to help!

I think that, thanks especially to this forum, I have a good set of topcis and questions that I can address with the doctor this coming Monday. I'm hoping she/he will help us in our quest to provide the best alternatives.

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  • 3 months later...

Hi CJ60 - thank you for redirecting me to your original post. Appreciate it. You did such a nice write-up, definitely worth sharing and resending like you did. VERY detailed. Can I admit, I am so overwhelmed. I need to sit down, and look at all the posts - I printed them out. I had my consult call with the naturalpathic doctor this morning at 8am PST. Like he said to me, it's like I'm going to have to become a detective and try and figure out what is affecting my son and what changes need to be made by process of elimination. Quite daunting..to say the least. Last night I started looking at the ingredients and fear lots of changes ahead. My 4 year old is so stubborn and is not quite comprehensive like my almost 7 year old when i tell him that we need to stop eating these cookies or these foods - he won't even "get it". I can't even reason with him. What can you recommend I purchase in lieu of the milk - soy? Or is that also a no-go?

 

You mentioned: magnesium supplement (currently Kids Calm); Is this a liquid form or powder? When i do a search on Kid's Calm i keep coming up with Peter Gillham's natural - looks like a liquid - do you give like a couple of teaspoons in juice or something?

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IMPORTANT: The Kids Calm magnesium powder that many write about here has been discontinued and the liquid multivitamin that it has been replaced with is not the same thing!

 

The Natural Calm is the best for helping with tics now that the Kids Calm powder is no longer available (magnesium citrate powder that can be mixed with water, juice etc)

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Hi Cws,

 

I'm glad you've spoken with a quailified guide. As Chemar is always so good about reminding people when she shares advice -- one should always check with a qualified practitioner when implementing changes to a child's diet and when supplementing. And also that what may provide benefits for one child may not necessarily provide benefits for another.

 

We have been able to substitute some soy products for some dairy products because allergy tests confirmed that my son was ok with soy. As Megan said yesterday, this is not always the case; some kids have soy intolerance. So if you do decide to give the soy milk a try without testing, please pay close attention to how your son reacts.

 

Every one here knows the overwhelmed feeling. Hang in there, know that changes can be made and feel good that you're taking some important steps toward helping your son. With time and patience you will overcome that overwhelmed feeling.

 

Enjoy your weekend!

(Starting to get chilly up here. Ugh. But not too long till the ski slopes open :)

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CJ60/Chemar: Thanks for your recent post. I found the following in lieu of Kid's Calm: Peter Gillham Natural Magnesium Calm -- 16 oz - is this the one? It's about $22.77 on Vitacost.com website offering various flavors. I copied and pasted Nature's Calm into the search box and came up with this.

 

Chemar can you confirm exact Magnesium product name for me to investigate. With so many types/products, even one ingredient could be off on a wrong purchase.

 

During my quick consult today on the phone, I directed the Naturapathic Doctor to your website. He was unfamiliar with it...surprisingly. He got online and was looking at it while we were talking. I explained to him that i actually found his type of expertise by noticing this type of doctor title mentioned within this website/forum and worked my way towards him.

 

CJ60: You mentioned the one diagnosis your son was given: transient complex motor tics. Very interesting. Seems pretty close (again, I'm pretending I'm a doctor/mother's intuition at work here)to my son's behavior. Since his symptoms/tics are coming, going and changing....seems very similar. I read something today that using positive behavioral response - praise him when he tries to not i.e. blink or deep and sigh heavily - that that can work. Maybe I can promise him a nice big toy if he stops - maybe that will work?!! Heck I'll do anything to rid this problem!!! I am going to see how that pans out over the weekend.

 

Funny, I pinged/emailed my mom and was telling her a little about this "tic" situation with my son and she reminded me, that when I was like 5/6 years old, I had a minor blinking habit. I totally remember it. When she emailed me back her response, she reminded me that she basically kept yelling at me and telling me to "stop"!! I guess back then there was an easy fix!! Things were much easier back in the day!! Mom fixed it with a quick yell and a scream. It was OK to scream at your kid then too!!!

 

Thanks guys again - it has been so nice to talk with other adults, feel so comfortable asking questions and getting some super info without having to take too much time off work or not having any info at all. Not sure how i survived only a few years back without the internet. In one week I feel I am armed and ready.....I am preparing my folder of info and will go through it and decipher more. Still need to sit my hubby down, but i know he'll give me the 'i have no time' or 'it's not that big of a deal' or "stop diagnosing it..." whatever..... a mother knows believe me. I do know i need to get the blood test panel and allergy test..to see if there is an underlying symptom....that is my next doctor step. Too bad that this doctor is not under my current health plan. I just don't feel like jockeying around my Kaiser group/pediatrician and just hearing the 'it will go away' after multiple visits, time off work, gas wasted and pulling my little guy out of preschool...been there done that.

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CWS, telling your child to stop or giving them a reward for not ticcing is probably not a good idea. My ds has said that when we talk about the tics he gets the urge to do them more, not suppress them. It really bothers him and I've heard other parents say the same. My ds has gotten to the age where he can talk about his tics on his terms but I've never asked him to stop. Sometimes I ask him if what he is doing 'feels like a tic' or if it's just a habit he's developing. If he says, "I think it's more of a habit and I think I can stop.", then I encourage him to do so. If he says it feels like a tic, then I leave him alone and let it wax/wane as needed. He's hardly ever bothered by his tics but when he expresses concern I always remind him that tics come and go and that he can take an epsom salts bath, drink some chamomile tea, and do some breathing exercises to promote relaxation. This usually seems to work and the next day the tics aren't quite as bad. My ds hasn't had a tic free day in 3 years now and we did have co-morbid conditions.

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Hello and welcome!

Looks like everybody had some wonderful advice. Not sure if anybody mentioned, but it would money well spent to have him tested for allergies, not the traditional way, but rather with a test like ELISA/ACT (https://www.directlabs.com/OrderTests/tabid/55/language/en-US/Default.aspx). For us it was HUGE. We realized that the FLAXSEED OIL supp I was giving my DS was a MAJOR trigger. Plus some food items, additives, food colors, and chlorine. Particularly indoor pools are a major trigger for us. So basically doing a test like ELISA/ACT is a shortcut to figuring out things that he does not tolerate well, and that trigger a neurol. reaction. Once we figured this out, we started washing his nose out 2 times /day, and that helped further. Plus of course all the good supplements for which CHEMAR is the expert.....

Good luck !

Giulia

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