Just needing a little encouragement today....

[laster99]

I don't know anyone else personally who deals with TS so I come here to read and remember that I am not alone, although sometimes it feels like it.

 

I know you guys must deal with this too, but sometimes it is so hard to be patient with your child's tics when they are driving you CrAzY!

Well, that's how I feel today.

 

SOme days I feel so patient and it's easier for me to ignore, but other days (I'm not sure if it is worse or just SEEMS worse because it builds up and we've been going through this for so long), I want to do something....ANYTHING to make it stop!

 

Some days it's just SO HARD for me to understand that it can't be controlled. I just want to believe that he could control it if he really wanted to. I guess it's just so hard to comprehend if you don't have it.........

 

His common ones right now are a squeal (sort of sounds like a bird and he does it at a volume that literally makes my ears hurt each time), a vocal "TKKK , TKKK, ", a slinging straight of the arm or leg (he does it so hard it looks like it hurts), and my absolute favorite......I don't know how he even does it, but he can move his torso in such a way that I can audibly hear a growling sound inside his belly. It just sounds disgusting! Oh...and I can't forget the constant eye blinking/rolling ritual he must do before he can even begin speaking. Most of the time, if you ask him something , it can take a while to get the answer because he has to do the "eye thing".

 

Please don't think me a horribly impatient mom. Do you guys ever feel this way ?? And how do you deal with it on the days it really grates on your nerves??

 

-Melissa

[ilovedogs]

(((Melissa))), my son's tics aren't near as bad as what you describe and I get frustrated by them. You are being a great mom by coming here to vent instead of exploding at home(which is probably what I would do at some point!). Are you doing anything to control the tics; meds, natural therapies, supplements, etc? Hang in there! I'll be thinking of you this evening and will send happy thoughts your way, along with some prayer!

 

Bonnie

[patty]

Melissa,

 

So sorry to hear that you are feeling this way and having a hard time. It all sounds so familiar as many of us here can relate. Just be assured that by making the necessary changes, implementing supplements and/or seeking other modalities, the tics can be manageable.

 

Keep reading here, you will find something that can help your son.

 

Pat

[laster99]

I have done allergy testing on him...all came back negative...

 

I used to have him on several things (Magnesium, probiotic, DHA, Vit D, B...I'm sure there are several things I am forgetting). When I firts started him on those, he seemed to get a lot better, and then over time, it seemed like it all came back as bad as it ever was. And he was SO SICK of taking all of it, I finally gave up.

 

Right now I am considering the possibility that it could be Candida related. It seems like it may get worse with sugar/carbs. Not sure what I am going to do about it yet, though. Anyone else think a candida problemis related? I actually made a connection with some other problems he was having and read a couple of articles that it could be related!

 

Thanks for the happy thoughts, Bonnie. I am feeling much better today. SOme days it just gets overwhelming and frustrating. I want to do something to help him, but I feel lost. I will definitely keep reading!.....and praying for patience. :-)

 

-Melissa

[CSP]

Melissa,

 

I know just how you feel. My son's tics could just send a chill up one's spine. I noticed I would lose it more with him when I was trying to do something and he would stand over me and screech. It was very hard not to want to tell him to go away. I felt bad but I would get upset with him because he did not see it was too hard to do any work around him. I would then be very mad when he would get mad at the rest of the family for talking or having fun anywhere near him while he was watching footall. He just did not seem to get it.

 

I had to just walk away when he was not doing anything wrong and it was just me.

 

I see now that it really could be an age thing he does much better at trying now. I feel bad that I expected more from him at 12yo.

 

You are only a limited human and only God is Perfect Love. You are not to know, or fully understand this perfect love here on earth. But He will show you today maybe tomorrow that He is visible in every miracle, every healing, and every need. Only God knows the magnitude of your needs, they may seem overwhelming, but His healing is even greater.

 

God Bless,

CP

[Megs_Mom]

Hi Melissa - Sounds like a rough day! I can really empathise, although my daughter has OCD not TS. But it sounds like some of these tics might acutally be compulsions (Oh...and I can't forget the constant eye blinking/rolling ritual he must do before he can even begin speaking. Most of the time, if you ask him something , it can take a while to get the answer because he has to do the "eye thing"). Have you had him evaluated for OCD? There is a great therapy, called ERP (Exposure & Ritual Prevention) that can help. It is actually now being tested in clinical trials for some TS - but is proven with OCD. Best -

[laster99]

CP, I understand that for sure. He often stands beside me, looking over my shoulder at something and does that loud screech in my ear. I KNOW he doesn't do it on purpose, but WHEW! It can send a ringing through my eardrum! I hope he can learn to control it as he gets older. I have encouraged him to try....not sure if that is the right thing to do or just asking waaaayyy too much. Thank you for your thoughts. I know God will help me through, but it's nice to have people that can relate to us.

 

Meg's mom, I do think he displays some OCD things. I have considered the eye thing to be one, but he also has a few things that he has to do and count the number of times he does it. It's not an overwhelming factor in things, which I am glad of, but it is there. And I do worry about it getting worse. He has not been officially diagnosed with the OCD, but I feel it is there. Do most people have a Neurologist they are working with or what? I am curious. When he was diagnosed by a Neuropsychologist, we were mailed the papers and that was it. They diagnosed him and didn't offer any further help, really. Is this how it works? I will look up the ERP thing...it sounds interesting!

 

-Melissa

[Megs_Mom]

CP, I understand that for sure. He often stands beside me, looking over my shoulder at something and does that loud screech in my ear. I KNOW he doesn't do it on purpose, but WHEW! It can send a ringing through my eardrum! I hope he can learn to control it as he gets older. I have encouraged him to try....not sure if that is the right thing to do or just asking waaaayyy too much. Thank you for your thoughts. I know God will help me through, but it's nice to have people that can relate to us.

 

Meg's mom, I do think he displays some OCD things. I have considered the eye thing to be one, but he also has a few things that he has to do and count the number of times he does it. It's not an overwhelming factor in things, which I am glad of, but it is there. And I do worry about it getting worse. He has not been officially diagnosed with the OCD, but I feel it is there. Do most people have a Neurologist they are working with or what? I am curious. When he was diagnosed by a Neuropsychologist, we were mailed the papers and that was it. They diagnosed him and didn't offer any further help, really. Is this how it works? I will look up the ERP thing...it sounds interesting!

 

-Melissa

 

Hi Melissa - yep, that is OCD - is is VERY often comorbid with TS and a lot of times, people find that a decent amount of the TS is actually OCD. Once you are diagnosed with OCD, you would use a therapist for ERP therapy (Exposure & Ritual Prevention) - they can be hard to find on a pediatric basis, but you can go to www.obsessivecompulsivefoundation.org and check the list of doctors there that do ERP. Medication does help severe cases, but for kids the first line reco is therapy especially for milder cases. You may want to start getting ready by reading "What to do When Your Brain Gets Stuck" (avail on Amazon) with him - it is very helpful to understanding OCD, the tools that are used to fight, and how to retrain your brain. Also for your reading, I'd suggest What to do when your Child has OCD: Strategies and Solutions - by Aureen Pinto Wagner. I found it SO helpful to start to understand the full range of possibly symptoms/compulsions of OCD. It is not logical, so you just have to learn a ton. I also really like www.OCDChicago.org.

[laster99]

Hi Melissa - yep, that is OCD - is is VERY often comorbid with TS and a lot of times, people find that a decent amount of the TS is actually OCD. Once you are diagnosed with OCD, you would use a therapist for ERP therapy (Exposure & Ritual Prevention) - they can be hard to find on a pediatric basis, but you can go to www.obsessivecompulsivefoundation.org and check the list of doctors there that do ERP. Medication does help severe cases, but for kids the first line reco is therapy especially for milder cases. You may want to start getting ready by reading "What to do When Your Brain Gets Stuck" (avail on Amazon) with him - it is very helpful to understanding OCD, the tools that are used to fight, and how to retrain your brain. Also for your reading, I'd suggest What to do when your Child has OCD: Strategies and Solutions - by Aureen Pinto Wagner. I found it SO helpful to start to understand the full range of possibly symptoms/compulsions of OCD. It is not logical, so you just have to learn a ton. I also really like www.OCDChicago.org.

 

 

Right...it seems to intermingle and sometimes I am not sure which is which because they are so similar! I seem to notice more things that lean toward the OCD side. And it makes a ton of sense that a therapy for OCD would help TS patients too.

 

I just looked it up and there are 2 drs. within 50 miles of me that do ERP. I really don't want to do medication, so ...... that might be a good alternative to look into.

 

And I have seen the "What to do when your brain gets stuck" book on Amazon and wondered if it would be helpful, so thanks for the recommendation. I am an avid reader and always looking for something else to absorb! I will check out all you suggested! Thanks for so much helpful info on that!

 

-Melissa

[Megs_Mom]

Ok, well if you are a freakish reader like I am, then here are three more books to put on your list for later:

 

Talking Back to OCD: The Program that Helps Kids and Teens say NO WAY - and Parents Say Way to Go - by John March (if the OCD is mild, and you are up to it, this one will help you put together your own ERP program at home - used in combo with "What to do When Brain Gets stuck")

 

Freeing Your Child from OCD: Powerful Practical Program for Parents - by Tamar Chansky (this is another great read for parents - more perspective on what OCD really is, how it can be treated, and how it looks in a variety of forms).

 

Brain Lock by Jeffrey M. Schwartz (This is more for adults - but I liked the model a lot, and it helped me understand OCD more intellectually. I really like the analogy of "gates in the brain that are stuck open" and found it helpful for putting together an explanation for our daughter about what was happening in her brain that she could understand.)

[Chemar]

Right...it seems to intermingle and sometimes I am not sure which is which because they are so similar! I seem to notice more things that lean toward the OCD side. And it makes a ton of sense that a therapy for OCD would help TS patients too.

 

I just looked it up and there are 2 drs. within 50 miles of me that do ERP. I really don't want to do medication, so ...... that might be a good alternative to look into.

 

And I have seen the "What to do when your brain gets stuck" book on Amazon and wondered if it would be helpful, so thanks for the recommendation. I am an avid reader and always looking for something else to absorb! I will check out all you suggested! Thanks for so much helpful info on that!

 

-Melissa

 

Hi Melissa

 

this merging and morphing of TS tics and OCD is termed "tourettic OCD"

 

it is the aspect of TS that bothered my son the most before the series of alternative and nutritional treatments that we introduced some years back, that have stabilized both his tics and OCD. The OCD was so bad that it totally controlled his life almost 10years ago. he will soon be 20yo and doing just great. He still has minor tics that wax and wane, and his OCD is far more of a mild eccentricity than the overpowering obsessions and compulsions that used to rule his life

 

In addition to the nutritional methods (diet and supplements) he has found acupuncture very helpful. As he has grown up, we have found interestingly that his OCD responds differently to different supplements, so it has been trial and error sometimes, but such a relief when the right supp at the right dose "fits"

We did try meds initially but with disastrous results as the side effects triggered many severe problems for him, so do approach any prescription drug intervention with great caution and foreknowledge

 

He also had Cognitive Behavioral Therapy (CBT) with a therapist who had many OCD patients, and some with TS too. He learned tremendous coping skills during those sessions.

 

Many CBT specialists do incorporate aspects of what ERP therapy uses, so you may find it easier to locate a CBT therapist close to you

 

whichever therapy you decide on, do please be sure the therapist has an understanding of TS as well as OCD and is a compassionate personality.

We did encounter one who was very domineering, and more interested in molding my son into her concept of who he should be, rather than helping him be himself, without being plagued by the OCD. If you find your child isnt relating well to the therapist, it is best to move on to hopefully find one with a better level of communication as that makes all the difference IMHO

 

hope you find ways to help your child too

[laster99]

Meg's Mom, I am definitely a freakish reader, as you put it. Amazon.com and bookstores are my favorite pasttime! Thank you for all the book suggestions. That should keep me busy for a while and hopefully help me understand the OCD side of it!

 

Chemar, I had no idea there was actually a term for it! I had tried some supplements a while back (magnesium, multi, C,D, probiotic, DHA, B complex) and they seemed to help for a while and then it all seemed to gradually come back. He got so tired of taking all of that and begged me to stop and I finally gave in since it seemed to stop working.

 

Thanks for the info on the CBT. I will try to check into some therapies to help him cope. Glad your son is doing so much better. I'm sure it's been a long road for all of you!

 

I am checking out the possibility of the relation to candida. HAve any of you run up on that before. I found this article:

 

Tourette's and Candida

 

-Melissa

[CarolynN]

Hello,

 

First I am so sorry for your discouragement. I had put together my theory as to what was ultimately going on with my son's tics and why I thought Daniel was reacting to food chemicals a while back. I had put together my theory as to what was going on with why I thought Daniel was reacting with these food chemicals back in January. Here is the link http://www.latitudes.org/forums/index.php?showtopic=2946 . Here are some follow up posts to that posting http://www.latitudes.org/forums/index.php?...Carolyn+N\ and http://www.latitudes.org/forums/index.php?...hl=Carolyn%5C.N .

 

 

We have been dealing with tics with my son since he was 3. I have posted on here many times about all the supplements he is on. The only thing I can say is he is almost 9 and pretty much tic free now as long as we keep up the supplements and he mostly avoids those things that bother him. He is heading into the peak time for tics for his age and with all of the supplements and diet change I truly believe his intestional track and liver are getting what they need now to help process out what he could not do by himself prior which was food chemicals (MSG, food dyes, high fructose corn syrup). It takes time for the body to heal once on the right supplements.

 

B6 has been a HUGE part of what helps Daniel. He gets anywhere from 50 mg's to 100 mg's a day. He get the 50 mg's from Bonnie Grimaldi's vitamins TS-Plus. Anyway when Daniel's tics get going I always give him an additional 50 mg's.

 

Speaking of the TS-Plus vitamin for Daniel it has helped him so much. He has been on it since he was 5. I did not realize how much it was helping him until I tried switching to a different product and within a month his tics came back full force. Another time I tried cutting his dose in half, just to save some money, and he seemed fine for a while. Then again I think his body became depleted of the vitamins and minerals, from not getting enough, and the tics have came back. So I realized I could not "cheat" and try to save money. He is on the recommended dose for his wieght now and doing great. It is an expensive product but well worth it. The biggest pain is it is so many vitamins for him to take but it is such a part of his life and he realizes now the benefit of the vitamins which makes it so much easier.

 

Another thing that has been sooo helpful too is Glycine. Glycine helps the neurotransmitters run more smoothly. He gets anywhere from 2500 mg's to 5000 mg's a day. When he is has really bad tics I give him 10,000 mg's for several days in a row. I use Carlson brand glycine.

 

Also when his tics get really going I increase his B6 to up to 150 mg's a day for about 3 days. Then I go back to the 50mg's a day.

 

Another product that he takes that has been really good for him is NAC (N-Acetyl-L-Cysteine). I buy the Vitamin Shoppe brand generic form. He currently is on 600 mg's a day along with 1,000 mg's of vitamin C a day. The vitamin C is helpful when taking NAC to help prevent kidney stones from building up from what I have read. Although my doctor told me this really is not too great of a concern. But the NAC helps the body remove chemical toxins and other toxins from the body. It supplements the liver. The vitamin C is important one way or another for many reasons. But one primary reason is to lower histamine levels.

 

Back to the NAC I know of at least 2 other people on the forum who had really good success with the NAC. It certainly would be something to run by your doctor.

 

Have you tried giving her Benadryl or some other anti-histamine to see if her tics reduce? I know I and many others have seen a reduction in tics with Benadryl. Some people, however, will have an increase in tics when taking it but not for most. My thought is if you see a reduction in tics you know that her histamine levels are elevated which more then likely they are elevated one way or another.

 

The other thing that really helps is taking Epsom Salts baths. Use 2 cups of epsom salts in a bath and soak at least 20 minutes. I noticed with my son that I don't see a sudden reduction in tics after the bath it is usually a couple hours later.

 

Hang in there. I know how discouraging this can all get but I know I have read enough testomonies of people that you certainly can lessen the tics with the right combination of supplments and also by finding out what the person's triggers are. One way to do this is to keep a food journal and make notes of when you realize the tics increase and what foods had been consumed around the time of the increase.

 

Carolyn N.

[Chemar]

Chemar, I had no idea there was actually a term for it! I had tried some supplements a while back (magnesium, multi, C,D, probiotic, DHA, B complex) and they seemed to help for a while and then it all seemed to gradually come back. He got so tired of taking all of that and begged me to stop and I finally gave in since it seemed to stop working.

 

Thanks for the info on the CBT. I will try to check into some therapies to help him cope. Glad your son is doing so much better. I'm sure it's been a long road for all of you!

 

I am checking out the possibility of the relation to candida. HAve any of you run up on that before. I found this article:

 

Tourette's and Candida

 

-Melissa

 

Hi Melissa

yes, there are many posts on the forum related to Candida. We used Candida Clear by NOW very effectively, along with specialized diet (great book is The Yeast Syndrome by Walker & Trowbridge that has excellent recipes at the back)

 

the supplements you mention are great for helping with tics, but wont do too much to make a dent in the OCD stuff

My son used to take mainly 5HTP and Methionine for his OCD, and it made a dramatic difference for him!

but now finds Inositol optimum (we use the Jarrow powder from iHerb as most cost effective.) He takes around 8gm daily when in wane mode and ups to 16 gm daily when he feels waxing.

 

The Natural Calm magnesium citrate powder mix has proven to be best form of magnesium for him, along with epsom salts (magnesium sulfate) tubs or foot baths

 

if you take a look at the link I have in my signature you will see what helped him. I need to update it with his current info as he no longer takes all those supps but instead uses an excellent Jarrow multi powder that he blends into a smoothie each morning, and the Natural Calm at night.

 

He has Crohn's Disease as well, and interestingly, one of the anti-inflammatory blends he takes for that, contains Boswellia, which we have learned also helps with OCD