Helping son's tics/anxiety get back under control

[CarolynN]

Hello everyone,

 

It has been a while since I updated everyone regarding how my son Daniel is doing. I wanted to share some things I think you will find interesting and I have learned some new things that have really helped out Daniel in the past couple months. As a reminder, Daniel has had tics since he was 3. He is now 8 and about 56 pounds. Through a lot of research and prayer we have discovered his triggers which are food chemicals (MSG, food dyes, and high fructose corn syrup) .

 

Again to remind everyone 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?...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 .

 

Anyhow, back in in the beginning of the year since I started Daniel on the N-Acetyl-L-Cysteine (NAC) and Postassium Bicarbonate I cut back on the TS-Plus (Bonnie Grimaldi's multivitamin for Tourettes). The key ingredients in this multi B vitamins and Magenisium Taurate. So I cut back from 12 to 6. I also, for the lack of $$$$$, cut out the enzymes because everything was getting so expensive. I also had cut out the Glycine. But I have to tell you what happened and you will see I found out I cannot cheat his body so to speak.

 

Daniel was doing amazingly well through the summer. I noticed literally no tics and we were allowing him a lot more liberal diet then before. No MSG up to this point but allowing him to have food dyes and high fructose corn syrup in small amounts. Amounts that before certainly would have set him off. But he was doing great.

 

Well no comes the month of September. We went camping and he had a lot of "junky stuff" that weekend still no tics. I am thinking wow this is great we really found the right answer for him and his tics!!! So that weekend we went to Dairy Queen. Remember I had allowed no MSG so this had not been tested against the NAC or the Potassium Bicarbonate. I thought ok this is the time I am going to test him. I allowed him to have 1/2 a chicken nugget with MSG. Yes just 1/2. On the way home his eyes started to bother him. Which it consistently has in the past with MSG. Within 48 hours he was having horrible anxiety. To the point I really did not know what to do. I am seriously not joking it was 1/2 a chicken nugget that set this whole thing into motion. He was having a bad head shaking tic too.

 

I then started thinking what has happened. How can a boy be that thrown by 1/2 a chicken nugget? After thinking about it for several weeks this is what I really believe had happened. I cannot prove it but it really is what makes sense to me. I also ran it by my Natupathic doctor and he agreed with me.

 

So what I think happened with Daniel went something like this. He eats the 1/2 a chicken nugget, his body cannot process it with the enzymes he is naturally lacking in, there is a build up of free glutamate, the free glutamate caused an increase in the neurotransmitters (dopamine ultimately), his sulfation system of his liver cannot keep up with what is going on with processing the toxins and the excessive neurotransmitters, his body that had been drained of magnesium taurate over the months of not getting enough could not help calm his system nor help process out the free glutamte from the MSG. This may be very elementary but this is my basic understanding.

 

I don't know if you realize this but magnesium is needed in so many functions of our body. So it is very easy to drain the body including when we eat chemical foods, foods we are allergic to, and when we get stressed or excited. What happened in Daniel's case is he must have been on the tipping point back in September with his body not having what it needed since I had backed off on it months prior. It just set off a whole chain of reactions.

 

It was interesting that prior to him going on the TS-Plus and additional magnesium taurate supplement, two years ago, he would grind his teeth horrible at night. After he was on the magnesium for the first couple months all this came to an end. Well after the chicken nugget episode the teeth grinding came back. I had read articles on the Internet with this being a sign of magnseium deficiency so all this fit the picture of his body getting depleted again.

 

But what I have learned is I need to keep him on the enzymes for breaking down protein. By having the enzymes help break down the proteins it is less taxing on his intestinal system. Some people just simply lack or are naturally low on certain enzymes. There are many, many types of enzymes in our bodies. Certain enzymes help break down certain types of foods. MSG for example needs an enzyme called diamine oxidase (this one is not one you cannot buy as a digestive enzyme unfortunately) and another one called phenolsulfotransferase. I am convinced Daniel is severely low in these enzymes. Here is a really good article I found on people who are Chemcially Sensitivity to foods and why they are. Also what you can do to help a person who is sensitive to chemcial foods. http://www.diet-and-health.net/Diseases/Ch...lAllergies.html .

 

One thing I learned and I have not followed through on any reading of this is over 80% of people who are sensitive to chemical foods has a chromium deficiency. What this means I really do not know but it is something I want ot explore.

 

Ok, on with my story, I now have a boy who is basically afraid to death to go to school. Daniel is convinced a boy in his class is going to kill someone because this boy is in class is somewhat erratic. His tics are now back in a fairly high level and I am completely panicked myself.

 

Within a few weeks I was able to get into the Naturopathic doctors. I am going to share something with you that I have been a little nervous on sharing. I am going to share with you what did amazing things to get his tics under control and the anxiety. But I am nervous because Daniel is a very healthy boy with no other complications. I don't know what conditions would not allow a person to do this so I would just ask you run it by your doctor first. But my Naturopathic doctor told me to give Daniel 150 mg's of B6 for 3 to 4 days. I divided it up during the day in smaller doses and I even woke him up at midnight to give to him. His anxiety was highest first thing in the morning so the doctor suggested getting some in him in the middle of the night to help alleviate. I had to consider how much B6 he was getting in his multi-vitamin so I would empty out some of the B6 in the capsules to make sure he was not getting over the 150 mgs. After the three to four days I was to go back to my normal dose of just over 50 mg's a day.

 

The other thing I did for him is give him 10,000 mg's of Glycine for eight days. Glycine is an amino acid (again broken down throughout the day and even at midnight). Glycine helps the neurotransmitters run more smooth. After eight days I was to go back to the normal dose of 4600 mg's a day. Like I said earlier I had stopped giving this earlier this year but I realize now how much it was helping him.

 

All I can tell you is by the third or fourth day of doing this I had a COMPLETELY different child on my hands. I could not believe it. I was so excited. Before I would dread my son waking up in the morning because he was clinging for dear life to me about going to school. Prior to doing this regimen, it was almost to the point where he was so obsessed over this boy at school he was paranoid. He was also getting depressed and did not want to get off the couch at all in the morning to get to school. It was all such a horrible effort. But now the boy did not bother him. Again this was after just 3 to 4 days.

 

I will share I am still having some issues with him going to school. But I would say it has improved by 90%.

 

Just the past week Daniel got sick with strep. I was wondering how he would do especially with all I have read about strep on this website regarding PANDA's. His tics picked back up, I think because of simply being sick and having a fever not due to PANDA's, but I did the same deal with the B6 and glycine but this time I just did 100 mg's of the B6 and today he has no tics. I did not put Daniel on anti-Biotics for the strep I did an all natural treatment my Naturopathic doctor had taught me. It involves grapefruit seed extract gargling with it, using grapefruit seed extract tablets, probiotics, a small amount of collodial silver, an I added olive leaf.

 

Again I want to caution everyone please run the B6/Glycine treatment by your doctor. My doctor knows all about Daniel's health and what supplements he is taking. There are things he probably did not share with me regarding the side effects because he knew Daniel could handle it. He did tell me with the B6 with that high of a dosage 150 mg's it was a possibility of Daniel getting neuropathy in his hands in feet. He said it would be temporary if it happened. It did not happen. But again it is something to be aware of.

 

My doctor also told me to give Daniel at least 50 mg's of B6 immediately if he comes in contact with MSG (obviously I would have to calculate how much he already had for the day to make sure he did not go over 150 mg's). He explained to me this is what he does for his patients who get MSG headaches. He said the B6 pushes out the effects of the MSG free glutamate attack.

 

To recap this is what Daniel is currently taking. I am completely aware with a growing boy, again he is 8 and approaching quickly the peak of tics which is around 10, I may have to change this again in the near future. Daniel again is about 56 pounds.

 

I have listed where I purchase these items but I am sure you can get them from many different sources on the Internet and just at other retail stores.

 

He takes 1/2 of these supplements in the morning and the other 1/2 at night. Also note the there may be some of these supplements that certain people with certain health concerns should not take. For example the Acetyl-Cystiene can be hard on some peoples body, for example someone with kidney issues or diabetics, so you want to do your research and talk to your doctors.*************

 

* Bonnie Grimaldi's TS-Plus (12 a day (I order these from her from this website http://www.bonniegr.com/ . You have to either call her, e-mail or fax her the order. She is also a very helpful lady).

* additional Magnesium Taurate 250 mg a day. (I buy the brand Cardiovascular Research from the Vitamin Shoppe)

* Glycine 4600 mg a day (I buy the brand Carlson from the Vitamin Shoppe). I mix this in the lemonade brand "Simply Lemonade". It just takes a little to disguise the taste and get it down.

* additional 1000 mg of vitamin C a day (I buy American Health Non Acidic with citrus bioflavonoids from the Vitamin Shoppe).

*Omega 3 (Nordic Naturals Junior I buy at the Vitamin Shoppe)

* Dr. Houstons No-Phenol enzyme. I am using about 1 a day. This is to help process artifical food dyes and salicylates. (I buy these through their Internet site http://www.houston-enzymes.com/ )

* Dr. Houstons AFP-Peptizyde (to help process proteins and carbs. It also helps improve "gut" health) (about 2 a day) (again I buy them through their internet site)

* Phosphatidylserine (PS-100) 1 capsule 2 x a day (this one my Naturopathic doctor really thinks is beneficial to the brain. He said he has seen tremendous results for all kinds of things with brain function. But it is not an overnight result it takes, I believe up to two months to build in the system. Also it is rather $$$$$. I read it also helps counteract the side effects of MSG to a point). (I buy this through Sprouts and I use a brand called MRM)

* pro-biotic called MindLinx (it also helps with processing gluten and getting the gut healthy). (You can purchase it through this website in either capsules or powder http://www.rockwellnutrition.com/HLC-MindL...S_p_0-1458.html )

*GABA for anxiety 1200 mg's a day. (I buy it through my GABA through my Natuopathic Doctor)

*NAC (N-Acetyl-L-Cysteine) 1200 mg's a day. Make sure you take high levels of vitamin C while on this product. From what I read it will help reduce the risk of developing kidney stones. (I buy the Vitamin Shoppe brand generic version through their store)

*Potassium Bicarbonate 1/4 tsp broken down into 1/8 2 x a day.

*Apple Cider Vinegar capsules 2 x a day (I buy Natural Factors at Sprouts but I am sure you can buy on the Internet)

*Additonal B6 on a an needed basis. But the TS-Plus has what he needs in it and as long as things are going well I do not need to supplement in any extra. (I buy my B6 in 50 mg' amounts from Vitamin Shoppe and I buy their brand)

 

So with all this said you can tell I have one very expensive son. We spend at least $150 or more a month on vitamins. I also have a boy who is SICK of vitamins. Who can blame him. But he is starting to understand what it means it if does not take them. The good thing is he swallows the pills so if he is just does it he can get it over with in about 3 minutes.

 

I am truly trying to figure out where I can cut back on some of these supplements. The problem is Daniel's body just does not detoxifiy correctly. He needs all these things to help the process along. It is very frustrating but it is what it is and we just have to accept it.

 

I have tried joining a vitamin co-op where you can get these vitamins a lot less expensive. I have been unsuccessful but would love to get involved in one if anyone knows of one that is accepting new people.

 

I also save money when the Vitamin Shoppe does there semi-annual sale on their generic brand of vitamins. I think it is in April and September it is buy one get one 1/2 off. Also I have found their website to have better sale prices then the store for some reason.

 

I am starting to explore other options for Daniel. I am considering taking him to an Environmental Doctor who understands more the bodies reaction to these chemical foods. I really want to see if there is a way to rebuild his body back stronger so we can do away with at least some of these supplements. What I have read is other then supplements the best thing you can do is avoid those things that are bothering your system, in Daniel's case all the food dyes, MSG, and high fructose corn syrup, to allow the enzymes to rebuild without getting damaged again. It can take months and months to rebuild it even to a minimum.

 

I am also considering Bio-feedback. I had done some reading prior and I was just discussing this with a doctor this past week I talked to on the phone. She thought it could really be of benefit to Daniel but it is VERY, VERY $$$$$$. It can run easily $3,000 to $5000. So I would really want to do my research on this before jumping in on this one.

 

I know this is so long but it has been quite a bit of time since I posted and I have found out so much. I hope it helps someone understand what is going on with them or their child.

 

God Bless,

 

Carolyn

[abbe]

 

Carolyn,

 

thank you. that was so sweet of you to respond and take the time to write everything out. I see some similarities in behavior with our sons..Anxiety re: school etc. This morning was bad because it is Monday I guess. Last night before bed he was saying he couldn't breathe well and keep trying to catch air out of his mouth and not his nose. I gave him afoot massage and got him to bed early. Does your son get frightened ever when you leave a room?? I put my sons "stuff" in yogurt. You are so lucky he swallows pills!!! I know I can't add much more to Nick's program so I might just introduce GABA and maybe the Glycine . My biggest problem is all of a sudden I took Nicky off diary and gluten and limited tv and videos and he feels punished in a way. It is such a delicate balance.. I put on that movie last night for 5 minutes and watched the boy do his head tick. My sons is not like that it is just like a mild stretch and his head looks off center at times. His throat clearing is almost gone???? and eyes come and go with the neck.

 

 

Biofeedback is a good idea. I actually wanted to open up a center in my area between my 3 kinds , 2 dogs, 1 chinchilla and job ha ha

 

 

 

abbe

[CarolynN]

Hi again Abbe,

 

You are so welcome. It is a joy to me to be able to pass along things that can help others. I know when I first started this journey I read every bit of information I could get my hands on.

 

Daniel does not get frightened about me leaving the room. But this morning was a tough morning getting him to school. He was off almost all last week being sick and he just enjoys being in the comfort around his parents. He just plain does not care for going to school and it really does get very frustrating.

 

Daniel started swallowing pills about 6 months ago. Prior to this I mixed everything in peanut butter. The poor kid was sooooo sick of peanut butter. But I would make little peanut butter balls and he would eat them. I finally convinced him to just try to swallow supper small pieces with out chewing. Finally it progressed to where he could do this and very quickly he started swallowing the pills. You could practice doing this with little raisins cut in half or any soft type of food. It is just the practice of not having to chew. I also think using a straw to practice swallowing can help.

 

My son also feels like he is an "outcast" for not being able to eat certain foods. He feels like everyone else can eat these "normal" foods but him. I cannot tell you how many times I have gone through the list of people in our lives with restricted diets trying to explain to him that many people have sensitivities to different things. So I understand what you are saying with the punishment feelings your son is experiencing.

 

 

Have a great day!

 

 

Carolyn

[ilovedogs]

Hey Carolyn,

I just wanted to add that we mix Grif's glycine in a supplement called Kidz Superfood by Amazing Grass. It's chocolate flavored mix and doesn't taste at all like the greens that are in it! This is one way that I cut down on the pills and I can mix other supplements in, as well, if needed. Currently, we are using the Kavinace that Dr Orona has him on from Neuroscience, 25 mg of Vitamin B6, 4600 mg of glycine a day, 100 mg of Vitamin C in the form of a proflavanol tablet, and a multi vitamin from Thorne Research. The pills from Thorne are very small and are a childrens formula so it's easier for him to swallow.

 

We just had our follow up with Dr Orona for the NEAT testing. Ds is doing well and has been very mild in his ticcing since August(except when he wore his mouth guard in football which lasted the first few weeks of the season). Dr P. has me trying to give him a liquid supplement of licorice and catmint to help calm his anxiety which is still sky high. I noticed that the kavinace works on his OCD type symptoms but doesn't really work for him in situational anxiety ie. going out to dinner, separation anxiety, and performance anxiety so Dr. P wants me to try this liquid along with the glycine and B6. Also, Dr Orona didn't suggest any other supplements from Neuroscience either, so I guess she's happy with his progress with the NEAT stuff, too. I'm not sure how I got off track here! Anyway, just wanted to update and thought that some folks might find it helpful to see what we're doing, as well. I am trying to add in the PS100(phosphaditylserene) soon and I want to get back on enzymes more regularly, too. Dr. Orona says that she is more and more convinced that these tics and issues are an immune system problem and how the body processes or doesn't process toxins, etc. Anyway, I'm glad to hear that you guys are doing better and that he made it through the strep incident without too much reaction, too. Keep in touch!

 

Bonnie

[guy123]

Glad you found something that works.

 

Did you say you got the chicken nuggets from Dairy Queen? They use MSG? I thought only Chinese places used MSG

[abbe]

 

Carolyn,

 

 

Hey, tried to get the glycine yesterday at whole foods but they didn't have it. I can't wait to give it a try. I realized this morning that Nicholas clearing of his throat tic is almost gone even when eating. I guess I didn't notice because he head tilt bothers me so much more because he looks crooked and in pain when he is doing it. I look forward to the mag cream coming in. He is suppose to go tho Chiro. on Thursday. My husband is nervous that it will bring to much attention to his neck and make it worse but I think he neck needs a chance to be "straight" even for a little while. This is why I got a new puppy so I can concentrate on him and pull away from every detail of Nicky's day. You can ge obsessed!!!!!

 

 

abbe

[patty]

Abbe,

 

I think chirop is a good idea. We did that as well. The neck tic can misalign the neck and cause pain. The chirop adjustment actually reduced my son's neck tic, not immediately but over time.

 

Pls keep us post it as i am very interested in using alternative treatments and responses. Thx!

 

Pat

[abbe]

Abbe,

 

I think chirop is a good idea. We did that as well. The neck tic can misalign the neck and cause pain. The chirop adjustment actually reduced my son's neck tic, not immediately but over time.

 

Pls keep us post it as i am very interested in using alternative treatments and responses. Thx!

 

Pat

 

 

pAT,

 

i WILL. i will FIGURE THIS OUT AND HELP EVERYONE WITH I CAN !!

[CarolynN]

Hello Guy123,

 

Oh how I wish MSG was just in Chinese food. Here is a post I did a while back about how MSG is hidden in so many different foods. http://www.latitudes.org/forums/index.php?...aded&start=

 

Have a great evening,

 

Carolyn

[treysmom]

Hi everyone,

 

I am brand new to this forum. Wow, I am not alone! I thought I would share my son Trey's story, in a nutshell. He is 8 and we live in Arizona. At the age of 5 he developed, what the doctors finally called, Cyclic Vomiting Syndrome-CVS. Basically, he had what presented itself as a 24-hour stomach flu, every 3 weeks; fever, vomiting every 30 minutes for about 8 hours. For a while, we just thought he kept getting the flu. He was not ever in daycare, and now in Kindergarten, he was bound to catch a bunch of things. Well, finally, I spoke to the doctor about the frequency and started keeping a record. Sure enough, this is not normal, saw a Ped GI doc, did upper GI test, could not find anything, so it has the name of CVS. (which by the way, has its own forum, and found a mother who directed me here). Eye ticking began this year. Thought it was allergies, as he does suffer with that. First grade, CVS a bit farther and fewer between, eye ticking comes and goes. 2nd grade, CVS even farther and fewer between, but tics begin in neck, shoulder. His tics come and go. Ped Doc sent us to neurologist, who says "Yes, he has tics, not tourrettes, quite commom, nothing to do about it". Through last year (2nd grade) they did come and go thru various parts of his body. 3rd grade, this year: Began major head jerking tic about 3 months ago. This is the first time for him that people have noticed it. Went from head to stomach, to legs, head bob, and so on. It has not gone away this time, only traveling throughout his body. Really upsetting to him and of course to us as parents. Saw a naturopathic doctor 2 weeks ago. I have taken him off of dyes/addititives/preservatives; well, I am working on it. I have always been a bit nutso over this anyways, so it is not a drastic change. This doc wants to do a certain blood test to check food/ metal levels in his body. Not sure if I should do it or not, as it costs $600. Besides the tics, Trey is actually pretty good. A bid OCD, but does well in school, lots of friends, plays sports. I also started him on fish/omega 3 oils and probiotics. Should I try the b vit/magnesium/NAC on my own? Any thoughts? Thank you for your time and thoughts and care in writing your stories and treatments. What a blessing!!

 

Dana

[ilovedogs]

Hello Dana! Just wanted to welcome you and let you know that myself and Carolyn are both here in the Phoenix area. We also both see the same naturopathic doctors(I actually got the names from her and started my son down this natural path about 9 months ago). If you have any questions or would like to trade notes, let me know!

 

Bonnie

 

 

Hi everyone,

 

I am brand new to this forum. Wow, I am not alone! I thought I would share my son Trey's story, in a nutshell. He is 8 and we live in Arizona. At the age of 5 he developed, what the doctors finally called, Cyclic Vomiting Syndrome-CVS. Basically, he had what presented itself as a 24-hour stomach flu, every 3 weeks; fever, vomiting every 30 minutes for about 8 hours. For a while, we just thought he kept getting the flu. He was not ever in daycare, and now in Kindergarten, he was bound to catch a bunch of things. Well, finally, I spoke to the doctor about the frequency and started keeping a record. Sure enough, this is not normal, saw a Ped GI doc, did upper GI test, could not find anything, so it has the name of CVS. (which by the way, has its own forum, and found a mother who directed me here). Eye ticking began this year. Thought it was allergies, as he does suffer with that. First grade, CVS a bit farther and fewer between, eye ticking comes and goes. 2nd grade, CVS even farther and fewer between, but tics begin in neck, shoulder. His tics come and go. Ped Doc sent us to neurologist, who says "Yes, he has tics, not tourrettes, quite commom, nothing to do about it". Through last year (2nd grade) they did come and go thru various parts of his body. 3rd grade, this year: Began major head jerking tic about 3 months ago. This is the first time for him that people have noticed it. Went from head to stomach, to legs, head bob, and so on. It has not gone away this time, only traveling throughout his body. Really upsetting to him and of course to us as parents. Saw a naturopathic doctor 2 weeks ago. I have taken him off of dyes/addititives/preservatives; well, I am working on it. I have always been a bit nutso over this anyways, so it is not a drastic change. This doc wants to do a certain blood test to check food/ metal levels in his body. Not sure if I should do it or not, as it costs $600. Besides the tics, Trey is actually pretty good. A bid OCD, but does well in school, lots of friends, plays sports. I also started him on fish/omega 3 oils and probiotics. Should I try the b vit/magnesium/NAC on my own? Any thoughts? Thank you for your time and thoughts and care in writing your stories and treatments. What a blessing!!

 

Dana

[CarolynN]

Dana,

 

Hello and welcome!!! Like Bonnie said I live in Arizona too. I live in the Goodyear area but go to Scottsdale and Surprise for my Naturopathic care. If you need any ideas of additional doctors just let me know.

 

Bonnie and I have actually had a chance to meet. It is amazing how the Internet is able to connect people together.

 

Carolyn

[MARYANN]

Hi Caryolyn, Can you tell me how many capsules you give for mindlinx probiotics. It's kind of expensive but it does sound like the perfect probiotic. What I really want to know is how long 1 bottle last.

[CarolynN]

Hi Maryann,

 

The bottle contains 60 capsules. The bottle says to take two capsules daily but seperate from each other.

 

However, if I am remembering correctly my friend who told me about Mindlinx explained that you do this for the first two to three months. So you would go through a bottle a month for the first few months. After that you can go to one time a day. She had spoken to the man who developed them. I do not know if this suggestion was just for her situation or this is a general recommendation. It does not say this on the bottle. When I see her again I can ask her.

 

Have a great evening!

 

Carolyn