HELP! I DON'T KNOW WHAT TO DO!

[amyg]

Hello,

 

First I have to say I am so glad I have found this site! But I will get straight to the point. I have a son who will turn 8 in just a matter of days. Over the last 2-3 days we have been dealing with yet another of his "tics" ( we don't know what else to call them at this point). He can't seem to stop doing them, even though we have tried everything we can think of-from asking him about them (i.e. "why are you doing that?", "can you stop doing it?", "do you think something bad is going to happen if you don't do it?"), and now we are taking the approach that if we ignore it, will it go away?

 

So, let me give a little history: we have noticed these tics for about 3 years now. They seemed to have started off mild and very sporadic, but are progressively getting worse. The very first "tic" we ever noticed was an obsession about pointing his "bad finger" ( a classmate had made it known there was such a thing )-he was terrified he was going to point it! He absolutely flipped out on me that day!

 

Well, after that first episode it hasn't stopped. We have dealt with him saying "I think" after everything, on to strange eye blinking and rolling, "shrugging" shoulders, head "rolling", throat clearing, AND NOW...grimacing of the face, almost a stretch out of the bottom lip kind of thing, along with curling of fingers and "frozen" posture.

 

Each episode can last anywhere from 1 week to 1 month. Then he will go a little while with nothing, and then he starts another tic. When he does tic, it consumes his day. Watching TV, eating, reading a book, playing, and even in his sports.

 

I am heartbroken that my little man is having to deal with this "stuff" in his mind. The more I research, the more it sounds like Tourettes. Could someone please help me and give any advice on whether it may be Tourettes or something else? And what steps I can take to get him some help!

 

P.S. I have mentioned it to his pediatrician, and he just mentioned "maybe mild OCD", but I think it's deeper than that.

 

Thanks!

Amy (lvmy2boysinTN)

[Chemar]

Hi Amy

welcome to Latitudes/ACN

 

from what you have written it does sound like your son is having symptoms of OCD along with tics but obviously this is just a guess based on what you have written and not a "diagnosis"

 

many things can cause this in young kids, not just Tourette

 

often the best way to determine why this is happening is to begin a process of eliminations

 

usually (tho not always) Tourette Syndrome is genetically inherited so there would be others in the immediate or distant family with tics. OCD frequently (tho again not always) accompanies TS

 

many kids have what are called "transient childhood tics" that seem to appear and then disappear without clear cause or cure

 

acute or chronic Strep infections (not always manifesting as strep throat tho!) can cause tics and OCD too

For more info on that do see our new PANDAS board here too.

There is also a related condition of PITANDS where it seems other bacterial, viral, fungal or microbial/parasitic infection can trigger neurological symptoms including tics and OCD

 

many kids with untreated allergies (food or environmental) can display tics and other disorders that appear neurological/immuno etc yet once the allergies are identified and treated there is enormous improvement

 

there are a number of other things that have been implicated in tics and neuro issues for kids including the childhood vaccines, heavy metal and other toxicity, photosensitivity etc and we discuss many of those here too

 

I hope those may give you some pointers into what may have triggered this in your child

 

most of us here have decided to use natural/alternative ways to help our kids rather than prescription medications, and we have found that a careful diet free of artificial and chemical food additives along with correct supplements really helps. A unifying theme seems to be that magnesium helps a large majority of people with tics, and parents here often give something called Kids Calm or the Natural Calm magnesium drink

 

there is LOTS more info on all this in many threads here

maybe start with those grouped in our "helpful threads" sticky http://www.latitudes.org/forums/index.php?showtopic=2459

 

I have documented what has helped my son in this thread http://www.latitudes.org/forums/index.php?showtopic=687

 

many of the things you describe of your child remind me of my own. he does have genetic Tourette with OCD and some other stuff which started when he was very young. he is now 19yo and doing really well on his nutritional treatment plan so do be encouraged that nomatter what your child's dx there really is much reason to be hopeful that you can provide very helpful interventions

 

I know our other members will share their experiences too...we have many and varied ones here. the boards are quieter over the weekends but pick up again during the week so do keep checking back for replies

[CSP]

Welcome Amy,

 

I first wanted to tell you, glad you found this place too.

 

Is there some tics issues in family history? I would look into finding that out. I think it helps when you know if the tics are from a family gene of if he is the only one, you may have a better chance finding out if it is something he is eating or something he is having an allergy too.

 

I first saw my son's tics after his swim lesson. Do you remember anything about what he has been doing on the days you see the tics come back. My son is 15 and I have a hard time with food, I feel like he is allergic to everything. I have a better time seeing his triggers when they are stress caused. Like today will be a bad day until the Steelers win. He will be better until the Superbowl. If the Steelers lose he will get very quiet and then he will not really care too much about who is in the Superbowl.

 

I think in the past it really seem to me he worried about too much and everything. Do you feel your son is worried about a lot of stuff?

 

Have you given any vitamins?

 

CP

[ilovedogs]

Amy, Just wanted to add that CSP and Chemar's boys both have inherited TS. I have a 10 year old boy and I'm still trying to determine the cause of his tics and OCD. I know how hard it is to watch your child tic and to not know what to do about it. As Cheri mentioned, many of us have found relief with diet cleanups and magnesium supplements. I try not to allow my son to have ANY food colorings, no MSG, limited high fructose corn syrup( I allow a Sprite here and there), no nitrates(although I truly haven't seen him react to it, I think it's just a bad preservative for any human not just those who tic), etc. We also see a wax and wane and I'm still trying to put the pieces together these past 14 months. What I'd suggest is keeping a log: a diary of his tics, frequency, etc. and also of the food he is eating. Then if you start supplements or vitamins you can start writing those down, too. We saw an immediate help from magnesium in the beginning but I don't see it helping as much now, I know this b/c I can go back through my record keeping.

 

I have yet to get my ds a diagnosis. Personally, we have no family history of Tourette's on either side of the family. Both my family and dh's family has history of anxiety disorders and depression. But, I also look at the fact that ds had a bad birthing experience and had nerve damage on his facial nerves from the forceps. He also stopped breathing in the womb so I wonder if any of those things caused neurological complications for him. All in all, though, he's a great kid! Totally normal and loves sports and hates schoolwork! Most people don't even notice his tics right now, but during football he reacted to his mouthguard and had an awful tic. It would last for about 2 days after the game and then fade away, only to come back again the day of practice. It was really weird. But, many moms on here will tell you that things that deal with the teeth may trigger tics. So, that's something else to be writing in your log. I noticed that his jaw stretching tic this summer was b/c of a loose tooth he had all summer long it seemed. Once the tooth fell out, the jaw tic stopped. Weird, isn't it??? Anyway, I hope this was helpful. I know there's so much to think about and we're all on this journey in a different way, but together, as well.

 

Bonnie

[Caryn]

Amy,

We have a child (will be 6 in a few days) that has greatly improved with a special diet. So I guess that would put us in the allergy category.

I HIGHLY suggest you buy Sheila Rogers new book. (The host of this forum, actually.)

That was the very first thing we did and it proved to be VERY beneficial. I have even joined the Latitudes Online paid subscription and have taken advantage of all the hard work they do in reading all the most recent research and reporting it for us. (All those scientific studies are costly if you wanted to buy them on your own.)

The online subscription isn't necessary, but the book is.

It gives you a complete overview of all the possible treatment routes you can take, including the kinds of testing you should do and what kind of doctors are best.

I have a blog with specific info on allergies and I post safe foods and recipes. It is quite small, but if you think allergies might be contributing you are more than welcome to poke around there.

Our story is at:

http://healthy-family.org/caryn/289

 

and at:

http://healthy-family.org/caryn/704

[Chemar]

I HIGHLY suggest you buy Sheila Rogers new book. (The host of this forum, actually.)

That was the very first thing we did and it proved to be VERY beneficial.

 

came back to mention Sheila's book and found Caryn already had

here is link to more info on the book

http://www.latitudes.org/book.html

[guy123]

It could be transient childhood tic disorder.

 

Even if it's Tourettes, in the majority of cases it gets significantly better and/or goes away entirely as they approach adulthood. It sucks that they have to deal with it during their formative years (like in middle school when kids can be mean), but it's often NOT a life sentence.

 

And sometimes the opposite happens. I developed a tic at 17 (which completely baffles doctors as that makes me such a statistical outlier) and I still have it 10 years later.

 

Good luck. There's a lot of info on this site.

[amyg]

To everyone who has replied to my post THANK YOU!

 

I wanted to answer a few questions that were asked, and see if anyone had any furter suggestions.

 

His tics do seem to be more frequent under stress or excitement. We have kept the TV and games completely OFF today, and they have not been that bad, still there, but not nearly as bad. Which, in and of itself is an epiphany to me!

 

We do not have any "diagnosed" family history of Tourettes, but I do have to say that my mother-in-law does have an obvious tic of clearing her throat, and she has for a long time. Although, she HAS been clinically diagnosed with Celiac. And I have read some articles about tics being a side-effect of gluten being in their diet.

 

We do not have him on any special supplements, just your basic Flintstones vitamins.

 

I did go to our local bookstore to get the book by Sheila Rogers, but unfortunely, they didn't have it in stock. I will have to order it online.

 

If anyone has any suggestions on a course of action, please let me know. At this point I'm not sure if I should read the book first and try that, or if I should go ahead and make an appt. with a pediatric neurologist, or if I should do both!?

 

Again, thank you all for your posts! You guys are such wonderful advocates for your kids! Way to go!

 

Amy (lvmy2boysinTN)

[Chemar]

We do not have him on any special supplements, just your basic Flintstones vitamins.

 

 

Amy (lvmy2boysinTN)

Amy those are a problem!! they have a bunch of artificial things in them including the dye and flavoring which are known to be tic triggers for most kids.

 

Caryn will have lots of info for you re the gluten induced tics in those with celiac disease

[amyg]

We do not have him on any special supplements, just your basic Flintstones vitamins.

 

 

Amy (lvmy2boysinTN)

Amy those are a problem!! they have a bunch of artificial things in them including the dye and flavoring which are known to be tic triggers for most kids.

 

Caryn will have lots of info for you re the gluten induced tics in those with celiac disease

 

 

Thanks Chemar! They will be in the trash tonight!

[faith]

hi amyq and welcome,

have you tried any dietary restrictions yet? What is your child's diet like? does he eat alot of processed and commercial products? I would suggest removing as much garbage as you can (and you will soon realize most of the foods in the supermarket are just that), and this means packaged junkfoods with artificial colors and flavors and most importantly high fructose corn syrup. would you say he gets alot of that? I'd also try going without dairy for a week or two and see what that does. you say you have kept him off the video games and that seems to help somewhat? well keep him off for a week and see what that does. baby steps, and maybe one at a time. when you see some positive results, note it down and keep on the course as much as you can. Just having some improvement means you are moving in the right direction. its not easy, and there will be setbacks even when you think things are going well. but if you see something positive happen, it at least gives you confidence that you are on the right track and that diet and looking for triggers does have some credence.

 

Read as much as you can around here on different topics. Also, you may be able to find Sheila's book at one of your libraries.

 

could I ask where you think you read something about tics being an effect of gluten for people with celiac? if you find and link the article, that would be helpful to some here.

 

Faith

[lynnie1264]

Hi Amyg...

Welcome, you sure have found a good site here. I'm not one of the one's with valuable info, I'm still learning, but you will find so much great advice here.

 

It's really hard to know where to start, as there seems to be so many different triggers in different kids.

 

My son was diagnosed in May, but I already knew. He's had little tics for a few yrs now. I just never put the whole picture together til the head jerking started last April.

 

After reading here how it helps to get rid of all artificial stuff, that's what I did. I can say he was very mild after that. However I got slack. He's just coming down off an increase in tics since New Year.

 

Most will say that a magnesium supp is beneficial. Can't really go wrong there.

 

Some go good with Fish oil, others don't. It's pretty much trial and error, but it's helpful to know that you can do something.

 

Then if it is TS, there's always the wax and wane to consider, and there's not always a recognisable time frame. So when you find something may be working then you see an increase, it could just be a waxing.

 

Don';t be put off either by Dr's who say the natural approach is of no use. It can be a great help.

 

Either way , getting rid of the junk from their diets sure can't hurt. They say artificial sweeteners are a HUGE no no. Along with other things, {not sure where I read it} caramel colouring and flavouring is also not good. {read that on quite a few sites, including this one I think}

 

So, to help there are those basics you could start with before trying to eliminate further.

 

As I said, I'm an amatuer at this, but I sure wish you the very best. And, things will get better. Once you get your head around things a bit more you won't feel so overwhelmed by it.

 

Lyn.

[amyg]

Here is where I found some info about the gluten & tics. It was actually from Caryn's site!

 

http://healthy-family.org/caryn/704

 

 

Here is another:

 

http://www.celiac.com/gluten-free/index.php?showtopic=19280

[CarolynN]

Hello and welcome!

 

I am so sorry to hear your family is going through such a difficult time. This website has been amazing for me to understand what is going on at the root of my son's tics. My son is now 8 but has had tics since he was 3. We have had him on many different supplements and did a MAJOR overhaul of his diet. We have had great results. You will find from reading so many peoples posts here that diet has sooooooooooo much to do with it. There is absolutely no getting around it. The trick is finding out what the triggers are and one way to do that is by keeping a dietary journal. But of course allergy testing can help.

 

For example we found out that my son is highly sensitive to MSG, Yellow Dye number 5 and 6, Red 40, and High Fructose Corn Syrup. The problem with MSG is it is under so many different names. Here is a posting I did regarding the MSG problem and all of its various names http://www.latitudes.org/forums/index.php?...aded&start= . You will see this in the post but school hot lunches are a source of a lot of MSG. I can absolutely tell you one of the best places to start is by getting all MSG and food chemicals out of the diet. They are no friend to the nervous system and it is like pouring gasoline on a already burning fire.

 

I created a list of foods on another posting that I found my son could eat. Here is the list http://www.latitudes.org/forums/index.php?...;hl=trader+joes .

 

Here is a link regarding my research as to what is actually going on within my son's body regarding why he cannot process certain foods well http://www.latitudes.org/forums/index.php?...mp;hl=sulfation .

 

Here is a link with what has so greatly helped my son regarding N-Acetyl-L-Cysteine and the other is straight potassium bicarbonate (I believe you can only get the potassium bicarbonate through a Naturopathic Doctor. Although I think one person on the forum posted that Alka Selzter Gold has it in it. Anyhow here is the link (by the way this one lists all the supplements I have my son on ) http://www.latitudes.org/forums/index.php?...amp;#entry21736

and http://www.latitudes.org/forums/index.php?...hl=Carolyn%5C.N

 

After you have read the above posts you will see my son is on many different products. By no means could I ever say that these two supplements alone are doing the trick but they have given him GREAT improvement. He is also taking Bonnie's Grimaldi's TS-Plus which has magnesium taurate and high B vitamins. He is also on some others but they are listed in the above postings. Many people have had great success with Bonnie's Grimaldi's TS-Plus. You can read more about the product at her website http://www.bonniegr.com/ .

 

Magnesium and B vitamins are HUGE in terms of what helps people naturally. The TS-Plus product I mentioned is very well balanced with these for someone with tics. In that product is Magnesium Taurate. Magnesium Taurate seems to be a very good source of magnesium. The key to magnesium is you want to take a magnesium that ends in "ate" and not "ide". The "ate" ending is much more absorbable.

 

B6 vitamin is huge in helping. My son takes at least 50 mg a day that is in Bonnie's vitamins. Some people prefer not to do Bonnie's vitamins because they want to see individually how each one of these supplements effect their child or themselves rather then having them all lumped together. I can tell you my son has greatly benefited from them but some, I don't think many, actually see an increase in tics being on the vitamins. But I really do think a greater number of people are helped verses the number of people who see an increase in tics. The other "issue" so to speak with the vitamins is it is A LOT of vitamins to take a day. For my son he is taking 10 of the TS-Plus plus numerous other supplements. So he is so sick of taking the vitamins but he knows he needs to.

 

The other thing to consider is candida. This is an overgrowth of yeast in the intestinal system. This seems to be a pretty common problem for someone with tics. So you might want to do a search on the forum about candida because there have been many postings.

 

Epsom Salts baths are very helpful to those that have tics (2 cups in a nice full tub of water). You can even do this twice a day for around 20 minutes a time.

 

Have you read up about PANDA's on the forum? These are tics that are caused by the Strep virus. Not all people with tics, by any stretch, have PANDA's but there certainly are quite a few that do. You might want to do some reading about the possibility of that being the root of the issue.

 

The other thing to consider is obviously getting the right kind of doctor. One place to start are doctors called DAN doctors. These doctors looks at neurological disorders in a completely different way. They are known mainly for there work with Autism but many with tourettes have used them. They look to find the root of the issue rather then covering up the root with medicine. Here is some information http://autism.about.com/od/alternativetreatmens/f/dandoc.htm . But a really good Naturopathic doctor would be a good choice.

 

I would also HIGHLY recommend these two books for you. One is the Shelia Rogers book "Tics and Tourettes" and also "Enzymes for Autism and other Neurological Conditions by Karen DeFelice." Both those books helped me a lot.

 

Just know there are answers. You may not see a 100% difference with any one action. It may be a series of things that need to be done.

 

God Bless,

 

Carolyn