7 years old boy has TS, Mom is heart broken

[dee45]

hI LeLe,

I am sorry you are having such a hard time dealing with this some days are better than others --hang in there the knowledge and insight on this forum is fantastic so many people who will gladly offer you help at any time. as far as Virginia you should start a new thread and see if you get some responses that way.

 

Deanna

[colleenrn]

LeLe-

How did your doctor rule out strep? I am asking this b/c some PANDAS children can have strep without any physical symptoms. Often the rapid strep test is negative, but if you do a full 72 hour culture it can be positive. Also, strep can hide in many other places in the body that a throat culture cannot test. Some children can have an active strep infection somewhere in their body, but still have completely normal strep titers (blood test).

 

Colleen

[lele]

LeLe-

How did your doctor rule out strep? I am asking this b/c some PANDAS children can have strep without any physical symptoms. Often the rapid strep test is negative, but if you do a full 72 hour culture it can be positive. Also, strep can hide in many other places in the body that a throat culture cannot test. Some children can have an active strep infection somewhere in their body, but still have completely normal strep titers (blood test).

 

Colleen

Colleen, I remember the docotor ordered a blood test for step, can't remember the name, something like TSA, and it was turned to negtive, my son did has several times strep infection before, but it was back to 2 years ago. Anything else e need to do for the PANDA test?

 

Thnaks for helping me, God bless you!

[colleenrn]

It was probably an ASO and/or antiDnase B, both looking for strep antibodies. Have you had a 72 hour throat culture? I would suggest that asap. You may want to also post on the PANDAS section of lattitudes.

Colleen

[CarolynN]

Hello and welcome to the forum. I am so glad you have posted here. I am sure you will be real encouraged by so many people who have found help through doing things naturally. Meaning changing diets and using supplements. Here are some things I wanted to share with you.

 

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. 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.

 

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. 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 .

 

 

 

B6 has been a HUGE part of what helps Daniel. He get the 50 mg's from Bonnie Grimaldi's vitamins TS-Plus. When Daniel's tics get going I always give him an additional 50 mg's for two to three days.

 

The magnesium taurate has been very, very helpful too. The magnesium helps calm the nervous system. It is essential for a person with tics to get magnesium going in them. There are different forms of magnesium. You want to buy one that ends in "ate". For example magneiusm taurate, magnesium citrate, magnesium glycinate. The ones that end in "ate" absorb much better in the body. The other ones do not absorb very well at all.

 

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.

 

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.

 

I hope this helps some. Don't get discouraged. I have read way to many testomonies of people that once they figure out their triggers (perhaps it is food chemical, dairy products, wheat, environmental chemcials like scented candles, new carpet, chlorine etc.) and get the right supplements their tics greatly are reduced. Your body is sending you a signal and now the detective work starts. One thing I did with my son is I kept food journals of what he ate. I would rate his tics that day (I would break up the day by morning and night) and assign a number from 1 to 10. I cannot tell you how much this helped me. Within a few months I started seeing the pattern of what was causing his tics.

 

Have a great day and I pray you find answers real soon.

 

 

Carolyn N.

[lele]

It was probably an ASO and/or antiDnase B, both looking for strep antibodies. Have you had a 72 hour throat culture? I would suggest that asap. You may want to also post on the PANDAS section of lattitudes.

Colleen

Yes, I guess it is ASO, it turned negtive result, do we really need to do the 72 hour throat culture? Thanks a million!

[colleenrn]

My children have had positive throat cultures, but normal ASO's. They have hardly ever had a positive rapid strep test. The 72 hr. culture is b/c some kids strep cultures do not turn positive by 48 hrs. I would have to say a big yes to doing a culture.

Colleen

[lele]

My children have had positive throat cultures, but normal ASO's. They have hardly ever had a positive rapid strep test. The 72 hr. culture is b/c some kids strep cultures do not turn positive by 48 hrs. I would have to say a big yes to doing a culture.

Colleen

Got it.I will make the doc. appointment for checking that.

 

By the way, how much epson salt do you suggest to put in the hot tub for a 7 yo one?

[lele]

Hello and welcome to the forum. I am so glad you have posted here. I am sure you will be real encouraged by so many people who have found help through doing things naturally. Meaning changing diets and using supplements. Here are some things I wanted to share with you.

 

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. 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.

 

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. Here is the link http://www.latitudes.org/forums/index.php?...mp;hl=sulfation and also some follow up links to this post http://www.latitudes.org/forums/index.php?...Carolyn+N\ and also http://www.latitudes.org/forums/index.php?...hl=Carolyn%5C.N .

 

B6 has been a HUGE part of what helps Daniel. He get the 50 mg's from Bonnie Grimaldi's vitamins TS-Plus. When Daniel's tics get going I always give him an additional 50 mg's for two to three days.

 

The magnesium taurate has been very, very helpful too. The magnesium helps calm the nervous system. It is essential for a person with tics to get magnesium going in them. There are different forms of magnesium. You want to buy one that ends in "ate". For example magneiusm taurate, magnesium citrate, magnesium glycinate. The ones that end in "ate" absorb much better in the body. The other ones do not absorb very well at all.

 

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.

 

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.

 

I hope this helps some. Don't get discouraged. I have read way to many testomonies of people that once they figure out their triggers (perhaps it is food chemical, dairy products, wheat, environmental chemcials like scented candles, new carpet, chlorine etc.) and get the right supplements their tics greatly are reduced. Your body is sending you a signal and now the detective work starts. One thing I did with my son is I kept food journals of what he ate. I would rate his tics that day (I would break up the day by morning and night) and assign a number from 1 to 10. I cannot tell you how much this helped me. Within a few months I started seeing the pattern of what was causing his tics.

 

Have a great day and I pray you find answers real soon.

 

 

Carolyn N.

"I kept food journals of what he ate. I would rate his tics that day (I would break up the day by morning and night) and assign a number from 1 to 10. I cannot tell you how much this helped me. Within a few months I started seeing the pattern of what was causing his tics. "

Yes, this is a wonderful idea! I will try it asap, but I have a question on that, how would you control the lunch he takes in the school? I hate to do that but maybe pack the lunch box for him is the only solution. My son just want some sandwich with ham, I know it is not good for his tics. please tell me how do you solve this problem, thanks in advance

 

Thanks for the encouragement.

[faith]

lele,

as far as a lunch sandwich, ham shouldn't be too much of a problem. the "boar's head" brand is pretty pure. when we did elimination diet thru the DAN doc to see what foods were a problem, I know boars head meat cold cuts were on the list of foods he could eat as they do not contain gluten or artificials.

 

Faith

[lele]

lele,

as far as a lunch sandwich, ham shouldn't be too much of a problem. the "boar's head" brand is pretty pure. when we did elimination diet thru the DAN doc to see what foods were a problem, I know boars head meat cold cuts were on the list of foods he could eat as they do not contain gluten or artificials.

 

Faith

what about the food preservatives and the food additives in the ham? Sounds really scary to think about that.

 

Thanks for your kindly help, Faith. what kind luch box do you normally pack for the kid? I would like to try dampling for my son, but he said his classmate teasing him a lot b/c he is the only chinese in the school, I am really suffering from that since, especially after he has TS, can't face that

[faith]

I could be wrong, but I think that the boars head brand doesn't have artificials. I'll have to look that up tho. I wish I could help with the lunches, I'm still trying to figure that one out! most of the time, I send him with a snack, usually Utz brand potato chips, and then I just feed him as soon as he gets home from school. He's always been picky and even when there is something he will eat at home, he doesn't want me to pack it for lunch.

 

Do you know what kind of foods are possibly giving your son a problem? Does he eat much chinese style food? do you prepare chinese style food at home? is it possible the msg that Carolyn N. has posted about could be a factor for your son? I would start by getting rid of as much artificial ingredients as possible first. If you are avoiding gluten and corn products, the poster "caryn" could give you some ideas, she follows a strict diet with her child. you could look up some of her posts, or she may come on to give some advice.

 

Please don't think that just because your son fits the criteria for TS now, that he will always exhibit these symtoms and they may not necessarily get worse. you have some work to do and you may very well be able to control and manage the course that this will take. and I will say again that I am sure that his habits will not be so noticed by children at this age, I think you will be surprised by how oblivious kids are.

 

Faith

[CarolynN]

Hello again!

 

Your right....school lunches are a real problem. I have done a lot of investigating of labels and the majority of them have some form of MSG in them. I pack my son's lunch every day. Here is a food list I created to give you an idea of what I feed Daniel http://www.latitudes.org/forums/index.php?showtopic=2976 .

 

Regarding the ham, I give Daniel Hormel's Natural Choice ham. There are no nitrates in this meat. The least expensive place I have found it at is Walmart. They usually have it "on sale" for $2.98.

 

Here is a posting I did regarding MSG and information on various names it is listed under. Also some of the foods to avoid. http://www.latitudes.org/forums/index.php?...d&pid=17225

 

Have a great day!

 

Carolyn

[patty]

lele,

 

you said you are in virginia. can you find a wholefoods or trader joe's?

 

here is a sample of things i pack for my kids' lunches.

 

1. Deli sandwiches (w/o anythings) on sour dough. or you can make your own roast beef, chicken or turkey meat.

 

2. beans, cheeze & rice

 

3. brown rice smoked salmon/avocado roll

 

4. brown rice fried rice using tamari instead of soy sauce

 

5. rice pasta w/spagatti sauce

 

6. bagel w/creme cheeze

 

7. refried bean w/corn chips

 

8. any vegetables: carrots sticks, broccolini, corn, broccoli, cauliflower

 

9. mashed potatoe w/choice of meat

 

10. hot dog on flat bread

 

11. any fruits

 

Hope that is helpful.

 

pat

[laurena82]

{{{{{{{{{{{{{hugs}}}}}}}}}}}}}} to you lele!

 

(or is lele your son's name?)

 

Anyhow......

 

I was in the same position as you (very similar) ........my son is now 24 yo and doing fine

 

 

"latitudes" was a newsletter then.....and it helped me alot!

 

I dont have alot of time to write today, but want to send you hugs and support!

 

This was my experience as well:

 

I have a seven year old boy with similar tics. He does a no dye,dairy,gluten,msg and perservative free diet. He doesn't eat high frutose syrup for the most part. I have him on supplements and probiotics daily. He does cognitive behavior therapy. He is 95%better.

 

 

e.g...what I found most useful was not so much what we ADDED (e.g. nutritional supplements, etc) but what we ELIMINATED: food allergans...ESP corn .

 

(corn is in EVERYTHING as "corn fructose" , "high fructose"....and tons of other names.)

 

I took him to a chiropractor who did APPLIED KINESEOLOGY muscle testing for food allergies. That identifed foods that were a problem....then we elimated those.

 

YES....it is DIFFICULT. I had to drive into the next county (back then) to find "health foods" that didnt have things like corn sweeteners/wheat etc.

 

HOWEVER.....when we DID close to 100 % eliminate these allergans.....his MOTOR tics were virtually eliminated as well!

 

 

His VOCAL tics, however, manifested as stuttering...and was not as easily treated.

 

Avoiding all the foods was SOOOO difficult, we eventually (age 9) resorted to catapres (clonidine)....it DID eliminate the motor tics similar to the food elimination.

(I'm not sure why your MD doesnt want to treat it?....have you consulted a neurologist?) Catapres has minimal side effects...mostly sleepiness....so we gave at bedtime.

 

Regarding the stuttering/vocal tics.....a few years later (age ? 11) I learned that not all speech therapists have "dysfluency" training......and took him to one that did.....and in less than a year...he was no longer stuttering.

 

The neurologist told us that he might "outgrow" the tourettes in adolescence......and....he did! We stopped the catapres at about age 14....and he's been fine since!

 

 

He is a wonderful boy/young man......and yours is as well!

 

 

 

When I signed in today, I said other members could contact me through email....so I'm assuming there is a way you can contact me through that if you want...

 

 

{{{{{{{{{{{{more hugs}}}}}}}}}}}}

and best wishes!

 

 

THINGS WILL WORK OUT

 

 

(ps: FWIW: most ham has corn products in it)