Please take a minute to help me

[LovingMJ]

Hi Everyone....I am new, just found this site last night. I am very scared....my thoughts are all over the place....please bare with me. I don't even know where to begin....

 

My son MJ will be 4 this January. He was always a runny nose and coughy kind of kid...the kid who was always sick. Every time I took him to the pediatrician he had a sinus infection. Always treated with antibiotics (NEVER was tested for strep). The ped recommends we go see an ENT...which we did last January. He suggested we go for a sweat test to see if he has cystic fibrosis (which was negative). He also suggested we go to an allergist to get tested for allergies. This is where things start to go down hill. He tested negative for all allergens, but he was SCARED to DEATH of the test. He cried like never before when the little needles went in to his back. Now, his fear of doctors begins. We begin to see the ENT regularly for his chronic sinus infections and each time we go he puts the scope in his nose...and he HATED IT!. Added to his fear or doctors. The ENT prescribed Singular on January 20th, 2008. From that date on....my little boy changed.

 

MJ had a very bad reaction to the Singular. He was only it for about 2 weeks when he became so fearful (to the point of trembling) and his blinking tic began. He also began to have frequent urination. The frequent peeing was the worst...broke my heart to see my baby like this. After we stopped the Singular...he slowly began to get better. The fearfulness/bad dreams stopped as soon as he stopped taking it. We went to urologists and eye doctors...all confirmed that he was fine. Just nervous tics that most boys have...he will grow out them. He ended up having his adenoids removed in April....and has been well in the sinus department since. All tics...peeing and blinking were gone at this point.

 

Everyone told me the fear of doctors made him so scared that is why the blinking started.

 

Flash forward to August....my husband and I are very excited for a family vacation at the beach. We talked about it every day to MJ and how much fun we were going to have (he is our only one so far). 2 days before we leave he is crying in raging pain that his ear hurts. Take him to the ped and he has an ear infection. Put on antibiotics. We left 2 days later and all is good until the drive there...I notice while MJ is watching his DVD in the back seat the blinking has returned. My heart instantly goes in to my stomach. When we reach the hotel and unpack he starts getting upset...saying that he misses his toys and is misses his house. He ends up having fun...but his behavior was off...acted up a lot and wasn't listening at all. The blinking continued for about a week two after we returned home and then life was back to normal.

 

Again...was told that the fear of going back to dr and the pain in his ear made him scared and stressed the blinking started again.

 

From August up until last week life was good for us all. My husband and I even commented how good his behavior has been and he has started to "grow up". Then BAM the eyes start blinking, he starts getting scared ALL THE TIME...will not go in his bedroom alone, will not go in any room with out a light on, will not sleep alone and will not sleep with a light on even with me. The frequent peeing has appeared at night too when he has bad dreams. Over the weekend he barely slept because he kept waking up crying about a hand hanging in a tree!! He also has been acting up again and doing things that he knows better not to. He also started a new tic...itching his butt! He does it constantly...I have made sure many times it was clean. It is just something he does and we try our best to ignore it.

 

As I was searching the net last night and came across some posts from this board...it HIT ME....MJ was just at the ped last week complaining his ear hurt. The doctor said he has swollen glands because when she felt his throat...he said OUCH! We left there with nothing...she said his ears were fine just some fluid in his ears it was just the start of a cold. At this point he was fine tic wise...no blinking or butt scratching.

 

Last night was a good night sleep wise. I have him Tylenol before bed and he only woke up once to pee. I asked him this morning..."Did you have a good sleep?" He said, "Yes Mommy...I didn't have any bad dreams". I think he was too tired of not sleeping the past few night it finally caught up to him. It breaks my heart.

 

All of you have been going through this longer than me and have experience. Do you think this PANDAS or OCD? His ped just feels his some nervous tics that will come and go and he will outgrow them.

 

I appreciate any and all feedback and I apologize that this is so long.

[CarolynN]

Hello and welcome to the forum.

 

First thing I wanted to recommend to you is that you copy your post, just go under the edit key and highlight your post and then hit control and the letter c at the same time, and repost it under the Tourettes/Tics section of the forum and also the PANDAs section. The Tourettes/Tics section, in particular, gets WAY more traffic then the OCD section. I think you will see you will get more responses.

 

Regarding your son and his illness it seems like there certainly could be a link. There is something called PANDA's which is a response due to strep in the body which creates OCD and tics. But there are many things that can create a situation of tics and anxiety related to either PANDA's or food allergies or even environmental allergies. So you can have different causes but with the same result tics and anxiety.

 

My son has tics and also anxiety. His are directly related to chemical foods that he is sensitive too. My son has had tics since he was 3. He is now 9 and about 90 pounds. The anxiety really started when he was about 4. Through a lot of research and prayer we have discovered his triggers for the tics/anxiety which are food chemicals (MSG, food dyes, and high fructose corn syrup) .

 

The anxiety thoughts and tics are very much interlinked. I have experienced this with my own son. When his tics are high so are the thoughts. I thought I would share with you some of his story. By the way, before I do that I want to tell you I have had OCD since I was a child. Recently I started taking some of the same supplements Daniel, my son, has been on and it has helped a lot. I have also started taking Inositol. That seems to be helping to. Another thing that really helped me is a book called "Brain Lock". It took me a long time, for some reason, to read it but it REALLY helped me understand how to control these unwanted thoughts. I think it would also help you understand OCD better. Although I have to say I completely disagree with the author in the respect of what is the underlying cause of the OCD since I have come to understand the diet/supplement connection.

 

Here is a post I did a while back that explains some of the other things I have found helpful in controling the OCD. It was a post a woman did calling herself "desperate". You can read my response to her if would like http://www.latitudes.org/forums/index.php?showtopic=2623 .

 

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 .

 

 

A while back I started Daniel on something called the N-Acetyl-L-Cysteine (NAC). I was trying to save money so I cut back on the TS-Plus (Bonnie Grimaldi's multivitamin for Tourettes/OCD). The key ingredients in this multi B vitamins and Magenisium Taurate. Anyhow, I cut back from 12 to 6. I also had cut out something called Glycine that had helped him so much prior. Glycine helps balance out your neurotransmitters. But again for money reasons I was trying to cut back. 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 his anxiety was low 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/anxiety!!! So that weekend we went to Dairy Queen. Remember I had allowed no MSG up to this point. 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 at that time he needed to go back 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 with you what did amazing things to get his tics under control and the anxiety. 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.

 

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 100 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 60 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 N-Acetyl-Cystiene (NAC) 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 500 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)

* He was taking but no longer is needing at this point....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/ )

* Again he was taking but no longer is needing at this point....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) 600 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)

*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 have just found a great website to buy most of the vitamins. It is called Vitacost. Also to 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.

 

One last thing I wanted to mention is I avoid Tylenol like the plague with my son. It is REALLY hard on the liver and when someone is having issues with tics the liver is a part of this picture. When you take Tylenol in it destroys something called your sulfate ions and these sulfate ions help you process out toxins and excessive neurotransmitters. When my son needs a pain/fever reducer we always use Motrin.

 

I just want to encourage you there are absolutely things that can be done for your son. I have no doubt at all. Keep digging for answers. I know through prayer God showed us what to do for my son. I am so grateful for that.

 

God Bless,

 

Carolyn

[mar]

Hi Everyone....I am new, just found this site last night. I am very scared....my thoughts are all over the place....please bare with me. I don't even know where to begin....

 

My son MJ will be 4 this January. He was always a runny nose and coughy kind of kid...the kid who was always sick. Every time I took him to the pediatrician he had a sinus infection. Always treated with antibiotics (NEVER was tested for strep). The ped recommends we go see an ENT...which we did last January. He suggested we go for a sweat test to see if he has cystic fibrosis (which was negative). He also suggested we go to an allergist to get tested for allergies. This is where things start to go down hill. He tested negative for all allergens, but he was SCARED to DEATH of the test. He cried like never before when the little needles went in to his back. Now, his fear of doctors begins. We begin to see the ENT regularly for his chronic sinus infections and each time we go he puts the scope in his nose...and he HATED IT!. Added to his fear or doctors. The ENT prescribed Singular on January 20th, 2008. From that date on....my little boy changed.

 

MJ had a very bad reaction to the Singular. He was only it for about 2 weeks when he became so fearful (to the point of trembling) and his blinking tic began. He also began to have frequent urination. The frequent peeing was the worst...broke my heart to see my baby like this. After we stopped the Singular...he slowly began to get better. The fearfulness/bad dreams stopped as soon as he stopped taking it. We went to urologists and eye doctors...all confirmed that he was fine. Just nervous tics that most boys have...he will grow out them. He ended up having his adenoids removed in April....and has been well in the sinus department since. All tics...peeing and blinking were gone at this point.

 

Everyone told me the fear of doctors made him so scared that is why the blinking started.

 

Flash forward to August....my husband and I are very excited for a family vacation at the beach. We talked about it every day to MJ and how much fun we were going to have (he is our only one so far). 2 days before we leave he is crying in raging pain that his ear hurts. Take him to the ped and he has an ear infection. Put on antibiotics. We left 2 days later and all is good until the drive there...I notice while MJ is watching his DVD in the back seat the blinking has returned. My heart instantly goes in to my stomach. When we reach the hotel and unpack he starts getting upset...saying that he misses his toys and is misses his house. He ends up having fun...but his behavior was off...acted up a lot and wasn't listening at all. The blinking continued for about a week two after we returned home and then life was back to normal.

 

Again...was told that the fear of going back to dr and the pain in his ear made him scared and stressed the blinking started again.

 

From August up until last week life was good for us all. My husband and I even commented how good his behavior has been and he has started to "grow up". Then BAM the eyes start blinking, he starts getting scared ALL THE TIME...will not go in his bedroom alone, will not go in any room with out a light on, will not sleep alone and will not sleep with a light on even with me. The frequent peeing has appeared at night too when he has bad dreams. Over the weekend he barely slept because he kept waking up crying about a hand hanging in a tree!! He also has been acting up again and doing things that he knows better not to. He also started a new tic...itching his butt! He does it constantly...I have made sure many times it was clean. It is just something he does and we try our best to ignore it.

 

As I was searching the net last night and came across some posts from this board...it HIT ME....MJ was just at the ped last week complaining his ear hurt. The doctor said he has swollen glands because when she felt his throat...he said OUCH! We left there with nothing...she said his ears were fine just some fluid in his ears it was just the start of a cold. At this point he was fine tic wise...no blinking or butt scratching.

 

Last night was a good night sleep wise. I have him Tylenol before bed and he only woke up once to pee. I asked him this morning..."Did you have a good sleep?" He said, "Yes Mommy...I didn't have any bad dreams". I think he was too tired of not sleeping the past few night it finally caught up to him. It breaks my heart.

 

All of you have been going through this longer than me and have experience. Do you think this PANDAS or OCD? His ped just feels his some nervous tics that will come and go and he will outgrow them.

 

I appreciate any and all feedback and I apologize that this is so long.

 

 

Just wanted to make a note about the Singular. My doctor told me to put my son on this for his allergies (constant stuffy nose and sneezing). I researched and asked around before I decided not to use it. Three close friends has the same experience that you had. All complained that their children had very bad dreams with uncontrollable tear and crying. Some would not even remember doing it in the morning. Also they mentioned it made them very hyperactive. Even the pharmacist mentioned her neighbor had the bad dreams. Needless to say I was afraid of putting my son on this and didn't. With the aniexty he was having at the time I dont know what it would of done to him. I also read on this post the steroids make tics worst.