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PLEASE HELP NICHOLAS IN CRISIS


abbe

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Hello, I need help !!!!!! Nicholas went off the benedryl on Thursday night. at school he ate snack food at a class party and woke up with his neck tic. By Sunday after being exposed to video games and fast food (he never ever has it) his neck tic became a huge neck jerk. It is so bad his body looks like it is being pulled by a force. I am completly in a panic. What can I increase or do to get him under control???? I am trying my best to stay calm but Nick is upset and he keeps saying my neck, my neck. What can I increase his supplement dosages to to calm it down. If I give glycine in the day will it make him tired?

 

 

 

abbe

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abbe,

Hi, I'm not an expert by know means but I'll tell you what I do when my sons tics start to increase a bit. I give him extra vitamin B6 and I give him a Epsom salt bath. My son gets 50 mg of vitamin B6 already in The Ts-plus so, I'll add 50 mg more of the vitamin B6. However, I do not do this everyday but, I will when his tics really increase. It seems to help a bit, and I'll take that. Also, I really try to clean up his diet as much as possible. I know it's so hard to see your child when the tics increase. I too find it very hard and I go into panic mode, I get knots in my stomach and it's all I can think about. But I do have to tell you that, I find that my sons tics seem to decrease to a milder form in time usually. So when I'm in this panic mode I try to tell myself, think on the bright side because hopefully the tics will get milder soon, which a lot of the time they do. I hope your sons tics calm down soon. Hope this helps a bit. Char...

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abbe,

I know how this feels, its happened to me, but like Char says, it does seem to calm down somewhere down the line. But I think the most important thing is to find what you think set him off, probably the garbage foods that you mention. Just get him off that, I feel the most important is high fructose corn syrup, that one seems to be what gives my son the more unusual tics. As long as I keep him fairly clean, I seem to be able to avoid those, but we do have the usual eye wink thingy and a vocal. Its all what you're used to.

 

yes, go with the B6 and epsom salts. I think the glycine would be fine to up if he has had that before (i don't use that so can't say from experience, altho I used NAC and there seemed to be no harm in that). Alka seltzer gold is something i use to sort of "counteract" acidity build up (aka alkalinizing) which is what happens with the bad acid forming foods. Having a better ph balance helps counteract any "allergies or intolerance reactions" better, at least that's how I understan it. And whatever else you think is a problem, could be something he has too much of everyday even if it is something normal and good like a certain fruit. I often feel that while something seems "okay" for him, once he starts consuming it everyday for a long period of time (and that happens alot around here), then i start to suspect that it is just too much and he starts to build a sensitivity to it. so pull back on anything like that.

 

Oh, and a few prayers are a good idea too. ^_^

 

Faith

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so sorry this has happened Abbe

 

it was dramatic reactions like those that finally convinced my son to never have another morsel or drop of any junk food or food with chemicals in it

 

I would agree on the Epsom salts bath to help calm things and also increasing the magnesium/B6 intake

 

if he has allergies, you may want to give some of his benedryl to calm the allergic inflammation that could be contributing to the increased tics...sorry but I can remember whether he was on it before for allergy or if you had just been testing the reaction to it

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Hello,

 

What has greatly helped my son to settle down his tics and anxiety is the high levels of B6 and glycine. My doctor told me to give Daniel 150 mg's of B6 for 4 to 5 days and then 10,000 mg's of Glycine for right about 8 days (he normally gets 50 mg's of B6 in a given day and 4800 mg's of glycine in a givin day). I spread this increased amount of these supplements up during the day in sets of 3 to 4 doses to make the amount he needs. You certainly do not want to give it to him all at once. I even give it to him at midnight so when he wakes up some is in his system. By the second to third day I notice a big shift in his tics. I no longer do the 150 mg's but do 100 mg's of B6 and it seems to do just fine. Daniel is 8 years old and 58 pounds.

 

I buy the Carlson brand of glycine at the Vitamin Shoppe. You can easily mix it in yogurt or into a juice.

 

I don't know what kind of health conditions would prevent a person from doing this. I know if you give too high of B6 for a period of time you can get neuropathy. But the doctor did not seemed concerned for this in Daniel's stiuation.

But I will tell you this has greatly helped settle down his tics. I wonder for people that have kidney or diabetes if that could be an issue. But I truly do not know what would be the reasons in avoiding doing it.

 

By the way the glycine by no means makes Daniel tired. I have never had any issues at all with that. I don't know that is a side effect of glycine anyhow. I have never come across that information.

 

I also do 2 cups of Epsom salts in his bath for 20 to 30 minutes. I do this, when they are bad, up to twice a day.

 

Another thing that really seems to help is drinking lots of water. I will give him ice chips and he seems to be able to eat one after the other. The water helps a lot too.

 

Also would you consider to keep him on the Benadryl until you get this figured out some more for him. It obvoiusly is helping keep his histamine levels down and helping control his neurotransmitters over all. I know it would not be a permanent solution but it could help him in the mean time. He can take the Bendadryl along with the B6 and Glycine. I have done this for Daniel many times.

 

Regarding the fast food, what did he eat? Soooooooooo much fast food has high levels of MSG. Especially chicken products. The MSG is really bad for the nervous system. It is Daniels worse trigger by far. He can eat very, very tiny amounts and get a big reaction. But the B6 helps to counter act this reaction to a certain point.

 

One trick that I have learned is to go online and eat at restaurants where they post the ingredients on their website. More and more restaurants post the ingredients. In general I have found Daniel can usually eat a hamburger with absolutely no seasoning and french fries (although McDonalds' french fries have a form of MSG and have to be avoided). The other thing he usually can eat at a restaurant is cheese pizza. However, I think Dominos pizza for example, has something in their pizza he cannot eat. That is why I only eat at restaurants where I have access to their ingredients. I have asked restaurants to bring out lables for me to read too. For example I was at Sweet Tomatoes and asked to read their soup label mixture. This was even after the manager said we do not add any MSG to our soups. Well I knew better because I know the various names and most people do not. I read the label of the soup mixture and right there "autolyzed yeast extract". It is basically impossible to eat soup out with an MSG sensitivity. It is in it probably close to 100% of the time because of the mixtures they use to get the soup base.

 

Here is the link to a post I did about MSG sensitivity and Daniel. Also about some of the hidden names for MSG http://www.latitudes.org/forums/index.php?showtopic=2598 .

 

By far the vast majority of time MSG is listed under some other name other then msg. Also products with soy sauce or parmasean cheese will affect Daniel. It is because of the way they are produced and as they are produced it makes something called "free glutamate". This free glutamate is what triggers the nervous system. I have researched many hours on the internet understanding the foods with free glutamate in it. We just have to avoid those foods with high levels of it in it.

 

Also I know after I would give Daniel a food that would set him off I would get so mad at myself for not knowing better. But it is a learning experience going through this. So don't be too hard on yourself. You will know for the next time what to avoid and it will be that much easier for you down the road. This is where it comes in very handy to keep notes so you can go back and reference those things that affect him.

 

God Bless,

 

Carolyn

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Hello everyone

 

I really really appreciate your responses. I really thought I was going to "lose it" yesterday when his head was jerking side to side. He looked like he was in so much pain and I couldn't help him. I did give him benedryl last night (I tried not to because now he can't have the allergy testing on wed. if antihistamines are in his body. Today the neck tick is there and it is a pull and it is happening very frequently but NOTHING like what I saw last night. Do you find the tics decrease the intensity before stopping. I did give him more magnesium but no glycine yet. He had all the other things he normally has though. As far as the school snack and the fast food I found myself giving in because I felt bad for saying no to everything. I woke up all night having night terrors and fears like you can't imagine...

 

I wish I could take on this pain for him. My husband just came home from work to support me emotionally. I want to write more and believe me I will never give my child anything to push him over the edge again. I took him off video games (he only get to play every other weekend for 1 hour tops but who knows what did it.

 

Do you ever feel that you could let this absorb your whole life? your whole being? I miss my other children . I feel like I am not there for them. My body is there but I just yes them and I am constantly thinking about what I did right, what I did wrong........

 

 

I am very down right now. I am sorry.....

 

 

abbe

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Carolyn,

 

Hi I was wondering what do you tell Daniel when his tics get bad? What tics does he have when they flare up? Do his friends know about them? I know tommorow is going to be hard to get him off to school so I was wondering how you handle it when his tics are flared up? I am sitting here with him while he is in the tub and it is a wonder what the epson salt baths can do . He just got a bloody nose which frightens me a bit because I don't want to be thinning his blood.

 

I was also wondering how long did it take you to get your son tic free and how long do the quiet times last? Anyway sorry to ask so many questions but I know our boys are the same age.

 

 

thx

 

abbe

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Just wanted to add that I don't think a bloody nose is a side effect to any of the supplements you are trying. It's always good to err on the side of caution but I don't remember anyone mentioning this. As for what my son goes through with his friends, it's been hard sometimes. He's old enough now and knows they are called tics so he tells them that's what they are. Most kids just leave it at that. Honestly, he's never been teased. Mostly the kids just want to know and once they know, they take it in stride.

Keep asking us all questions, it's the best way to calm your nerves and to realize that others are either going through this same thing or have been there, done that!

 

Bonnie

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Hello again,

 

Daniel is still at the age where he does not notice his own tics until they get uncomfortable. Most of the time they are as if it is just part of everyday Daniel. He has had a few children ask him and I have just told him to say it is because of allergies.Anymore most children have heard of allergies. I think the biggest thing is for a child not to make a big deal out of it. Just to explain and move on with other things. As he gets older I am sure we will come up with a more direct answer.

 

One of my friends knows a girl with Tourettes. But she has been so successful in school and socially. She has now graduated from high school. The way she handled it is she was just real graceful to people when they asked what was going on. She explained she had Tourettes just very matter of fact. I think when a person can explain what is going on it takes the sting out of the possible outcomes of people wondering.

 

I agree with Bonnie, also known as ilovedogs, the bloody nose is more then likely due to some other circumstance then the supplements or epsom salts baths. Daniel has been on these supplements since the age of 5 and has never gotten a bloody nose because of it.

 

The other thing I would mention is the tics are obvious to us as parents but not so much to others. There are times when I get real nervous about Daniel going to school and the teacher has told me time and time again she never noticed anything. We are so aware as parents and notice every detail where most people would never pay attention.

 

Daniel could be completely tic free all the time if it were not for Birthday parties, school parties, treats here and there, Christmas time treats, Halloween, etc. There always seems to be a reason for a treat. Daniel's triggers are the food dyes (especially yellow #5 and #6 and Red #40), caramel color, high fructose corn syrup, and MSG. So the long and short of it is if it is avoided no tics. But if he has had more then his body can tolerate, which believe me compared to most people, it is not much at all he gets tics. But like my naturopathic doctor said if Daniel had lived on a farm, back 100 years ago, he would probably never had one tic. He would have been eating perfect for his body back then.

 

Daniel has been on the supplements since 5. I have added to his supplements over time. But prior to me doing the B6 and glycine regimine my Naturopathic Doctor told me to do, I would notice this pattern. Daniel would take something in like MSG. The first day I would certainly notice an increase in tics. The second and third day after would be the worse. By around day 6 or 7, as long as I kept his diet clean, he would be doing fairly well with his tics.

 

Now with all that said if Daniel has had chemical foods and has tics if he gets excited or upset that will really set his tics off for a bit. They usually settle down fairly quickly because I know what to do for him now.

 

I hope this helps. Just realize this will not last forever. The other thing is I have read so many stories about Tourettes/Tics and how much stronger people become because of them as they mature in life. So I know it seems really hard now but down the road it will get easier.

 

The other thing I quickly want to mention is PLEASE, PLEASE do your research on vaccinations before you do any on him. Many on this forum have noticed quite the increase in tics after being vaccinated. The reason being is a persons body who already cannot handle toxins in general is now having to deal with the toxins from the vaccinations. You can do searches on this site for and find a lot of information regarding peoples opinions and stories. But I will certainly tell you that there that as long as I have control over Daniel's health, until he is 18, he will never receive another vaccination again. I have no doubt his body would have a real difficult time with it.

 

Another thing I just thought of is could you get him to take some Bendadryl tonight say around midnight? That might help settle his body down some for tomorrow. Also do you have any B6 you could give him tonight too say around midnight? At least 25 to 50 mg's. As long as you have not given him some today that would make him go over the limit. That would probably help him out.

 

Hope this helps some. If I left something out please let me know. I will also be praying for your family.

 

Carolyn

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Nose bleeds can be a sign of allergy. It is also a possible sign of anemia.

Low iron stores might cause that. Has your son been tested for that sort of thing? My ds did have occasional nose bleeds before we found out he is celiac and needed to change his diet.

What type of stuff was your son eating a lot of? Maybe that might give you an indication. If you think benadryl was helping and fast food (mostly filled with soy, corn, and wheat) triggered a flare up, I would consider allergy testing, specifically an IgG test.

When my son gets an exposure we go for the benadryl and it always helps. He has allergy induced tics.

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Hello again,

 

Daniel is still at the age where he does not notice his own tics until they get uncomfortable. Most of the time they are as if it is just part of everyday Daniel. He has had a few children ask him and I have just told him to say it is because of allergies.Anymore most children have heard of allergies. I think the biggest thing is for a child not to make a big deal out of it. Just to explain and move on with other things.

 

One of my friends knows a girl with Tourettes. But she has been so successful in school and socially. She has now graduated from high school. The way she handled it is she was just real graceful to people when they asked what was going on. She explained she had Tourettes just very matter of fact. I think when a person can explain what is going on it takes the sting out of the possible outcomes of people wondering.

 

I agree with Bonnie, also known as ilovedogs, the bloody nose is more then likely due to some other circumstance then the supplements or epsom salts baths. Daniel has been on these supplements since the age of 5 and has never gotten a bloody nose because of it.

 

The other thing I would mention is the tics are obvious to us as parents but not so much to others. There are times when I get real nervous about Daniel going to school and the teacher has told me time and time again she never noticed anything. We are so aware as parents and notice every detail where most people would never pay attention.

 

Daniel could be completely tic free all the time if it were not for Birthday parties, school parties, treats here and there, Christmas time treats, Halloween, etc. There always seems to be a reason for a treat. Daniel's triggers are the food dyes (especially yellow #5 and #6 and Red #40), caramel color, high fructose corn syrup, and MSG. So the long and short of it is if it is avoided no tics. But if he has had more then his body can tolerate, which believe me compared to most people, it is not much at all he gets tics. But like my naturopathic doctor said if Daniel had lived on a farm, back 100 years ago, he would probably never had one tic. He would have been eating perfect for his body back then.

 

Daniel has been on the supplements since 5. I have added to his supplements over time. But prior to me doing the B6 and glycine regimine my Naturopathic Doctor told me to do, I would notice this pattern. Daniel would take something in like MSG. The first day I would certainly notice an increase in tics. The second and third day after would be the worse. By around day 6 or 7, as long as I kept his diet clean, he would be doing fairly well with his tics.

 

Now with all that said if Daniel has had chemical foods and has tics if he gets excited or upset that will really set his tics off for a bit. They usually settle down fairly quickly because I know what to do for him now.

 

I hope this helps. Just realize this will not last forever. The other thing is I have read so many stories about Tourettes/Tics and how much stronger people become because of them as they mature in life. So I know it seems really hard now but down the road it will get easier.

 

The other thing I quickly want to mention is PLEASE, PLEASE do your research on vaccinations before you do any on him. Many on this forum have noticed quite the increase in tics after being vaccinated. The reason being is a persons body who already cannot handle toxins in general is now having to deal with the toxins from the vaccinations. You can do searches on this site for and find a lot of information regarding peoples opinions and stories. But I will certainly tell you that there that as long as I have control over Daniel's health, until he is 18, he will never receive another vaccination again. I have no doubt his body would have a real difficult time with it.

 

Another thing I just thought of is could you get him to take some Bendadryl tonight say around midnight? That might help settle his body down some for tomorrow. Also do you have any B6 you could give him tonight too say around midnight? At least 25 50 mg's. As long as you have not given him some today that would make him go over the limit. That would probably help him out.

 

Hope this helps some. If I left something out please let me know. I will also be praying for your family.

 

Carolyn

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Just want to add that Kirkman Lab makes a magnesium creme that is very helpful to calm the tics. Just apply the creme to the tic area.

 

I know this must be a very stressful time, but do try to relax alittle. I say this, because all the stress for the last 3 years has taken a toll on my mental & physical health.

 

Take care!

 

Pat

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[quote name='Carolyn.N' date='Jan 19 2009, 11:18 PM' post=

 

 

 

Carolyn,

 

As always thank you for your support and advice. I decided to keep Nicholas home from school today to get the anxiety down but to also load him up on supplements and keep his diet clean. I started a food diary also. Today so far he has had scrambled eggs with rice milk and a gluten free cereal. He tested clear on eggs at his first allergy testing. I read somewhere that the sulfites in eggs can be helpful??I forget where or when. As far as vaccinations go forget about it no more for any of my kids ever. I questioned my ped. dr. on all the kids years ago and gave half dose at a time. They told me why wold I be mean to my baby and give them mre needles not less...............

 

 

Well today his neck tic is almost not even there and when he does do it it is more of a stretch not the forceful jerking that was happening non stop for the past two days.

 

 

I feel like this is all starting to make more sense now though. Diet clean and benedryl Nick ok I think. I had him tic free without benedryl also . I need to get the allergy testing done next Tuesday but I have to have him off the benedryl to do it.

 

I will write back soon. thanks again

 

abbe

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Patty,

 

Thx I did buy and use the mag. cream. He doesn't like it so that can be an issue..

 

 

 

 

Update though I let Nick on a basic computer game like a pong game and his neck tick/jerk flared right up...............I think he needs off all video and computer games....

 

 

abbe

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