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Nicholas' tests results in


abbe
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Hi everyone,

 

I haven't posted in awhile because I have been waiting and watching. As you may recal my son Nicky age 7 had an eye rolling tick this past summer. On October 31st it turned into a throat clearing, neck tick very bad. I put him on Magnesium, acetyl lcarnitine, b6 , b complex and glycine. I cut out wheat and diary eggs and oj.. We then saw a reduction in his throat tick to almost nothing except when eating and he still had the neck and eye tick. At the end of December we did half of his allergy testing. One day prior to that he developed a stomach tick also. He tested positive for dairy and slightly for soy. We put him on an antigen for dairy. We let him eat wheat and eggs again. no dairy and limit soy. On that Friday we drove 3 hours to a healer named Mietek Wertek. amazing guy who we have seen before. Nick saw him Friday and Sat. for two sessions. In two days my son was transformed into this nice little boy again and his neck and eye tick stopped completly. The stomach tich remained. I held my breath cryed tears of joy and got to see my little boy again with a still head. It truly was a christmas miracle. Last week 18 days later the neck tick came back. The only things I could attribute it to were a cold that came on for Nick, he ate peanut butter that day, he went back to school. So I was a mess crying again etc.

 

I just went to his nat. doctor and got his test results back. He wants me to add in Glutathine (smells like rotten eggs), b12/Methyl, b5, a better flora plan, vit e, l carnitine, and 3 supplements from Neuroscience Calm prt jr, trava Cor Jr. and Tyrosine spray,

 

Also he wants nick on Nystatin for yeast over growth.(also tasts like ___!)

 

HERE IS MY QUESTION Does anyone have any negative or postive stories on any of thes additional supplements. He told me I could take him off Glycine also. By the way a huge factor in this for Nick I feel is he doesn't sleep the night well. He is very, very restless. To prove a point to myself on Thurs. ngt I gave him a teaspoon full of Benedryl. When he woke up Friday he was pleasant, happy and the neck tick was gone. I feel that my sons nervous system is shot for what ever reason. You may recall from my prior posts that he had an accident when he was 5 and tore the artery in his neck and had 3 strokes. he recovered completly and you would NEVER even no it. He does have to take a baby asprin per day though . He is more athletic then his older brothers! I told the doctor about the sleep issue and he said I could give him a very small amount of melatonin before bed .5 mg.

 

I am sorry to ramble but I have no one to talk to about this. I want to move slowly and not overwhelm myself or him for that matter. I mix his herbs in applesauce because we can't use yogurt anymore.

 

I appreciate any suggestions or help you may give me. I won't be back online until Monday I am going to the Poconos

 

 

THANK YOU ABBE

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hello abbe,

hope you are feeling a little better by the time you read this after your weekend trip. :)

 

My first inclination was to ask what type practioner is the "healer" you mentioned, but I did go back over your first post and see it is someone who does energy work? That is good, I am on that path right now too, so I am glad to hear that you had some relief with whatever he does. What exactly does he do? accupressure, accupuncture? You said you have seen him before, did it provide the same type of benefits? Also, what type allergy testing did you do? Is dairy and soy the only things that came up? What is an antigen to dairy, btw? I do think the allergies play a role, so keep your eye on that ball too.

 

Re the supplements you mentioned, I think you should just try out this protocol, for it is the same with most things, basically trial and error. The list you mention seems sound to me, the neuroscience calm prt does contain glycine so I guess that's why he said to discontinue what you were giving. The only thing I am wondering about is the tyrosine, maybe you could ask what this is supposed to be beneficial for, because I'm pretty sure this is one to watch for those with tics, I think, so just watch for any increase if you do use that. (Is this all based on the testing results you mentioned? what type test is it?)

 

You mentioned in one of your posts your feelings re stress and adrenals. I think you are on the right track in finding and fitting the pieces of the puzzle totether, so focus on the things you have so far. Its all connected somehow. There is a recent thread where stress and adrenal function was discussed and the vitamin b5 (pathotenic acid) is mentioned, so that is good that it is on the list. here's the link to that thread:

 

http://www.latitudes.org/forums/index.php?showtopic=4248 (starting with post #5)

 

Also, what did you mean by him being "transferred back into a nice little boy" after the healing doctor visit? Are you just referring to the tics, or are there behaviors involved too?

 

Hope you had a relaxing weekend! Was there alcohol involved? :lol:

 

Faith

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Faith,

 

 

Ha ha there was plenty of alcohol involved. I think the first time I had a drink after this whole tic thing started my husband and I were at a Flyers game and drank so much for us (we don't drink) I forgot the game was playing. In any event to answer some of your questions. i did blood work and two urine tests to get the results. the allergy testing that I did was one needle at a time shot in his arm for a reaction. He was not allergic to wheat, corn or eggs. The healer I took Nicky to is world reknown I will post a link if you are close to MD> We drove 3 hours to him. When I said transformed back to a nice little boy after Nicky left wertek's office he was within 24 hours 100% more cooperatiove, he listened better, he didn't talk back. he was like a little angel. Nicholas has always been a little moody (he is a gemini) .I am not going to use the tyrosine if even one person said it caused more ticcing. end of story. Now for an update after the weekend. Nicky was getting a cold. He actually has such a strong immune system it was hard to tell. It settled in his chest a little though. But the news is my x gave him 1 teaspoon of benedryl before bed each night and tics are once again GONE>>>>>I feel that wehat I need to figure out is it that he sleeps better and his whole nervous system is more relaxed or is it a high histamine level. If in fact it is a high histamine level there is an herb that would help that called stinging nettle I use it as well as my older son for allergies.

 

 

 

I gave him his first teaspoon of nystatin for the yeast today????????????????????????????

 

 

 

 

 

 

 

 

 

 

If anyone else has any additional comments that would be great

 

abbe

hello abbe,

hope you are feeling a little better by the time you read this after your weekend trip. :)

 

My first inclination was to ask what type practioner is the "healer" you mentioned, but I did go back over your first post and see it is someone who does energy work? That is good, I am on that path right now too, so I am glad to hear that you had some relief with whatever he does. What exactly does he do? accupressure, accupuncture? You said you have seen him before, did it provide the same type of benefits? Also, what type allergy testing did you do? Is dairy and soy the only things that came up? What is an antigen to dairy, btw? I do think the allergies play a role, so keep your eye on that ball too.

 

Re the supplements you mentioned, I think you should just try out this protocol, for it is the same with most things, basically trial and error. The list you mention seems sound to me, the neuroscience calm prt does contain glycine so I guess that's why he said to discontinue what you were giving. The only thing I am wondering about is the tyrosine, maybe you could ask what this is supposed to be beneficial for, because I'm pretty sure this is one to watch for those with tics, I think, so just watch for any increase if you do use that. (Is this all based on the testing results you mentioned? what type test is it?)

 

You mentioned in one of your posts your feelings re stress and adrenals. I think you are on the right track in finding and fitting the pieces of the puzzle totether, so focus on the things you have so far. Its all connected somehow. There is a recent thread where stress and adrenal function was discussed and the vitamin b5 (pathotenic acid) is mentioned, so that is good that it is on the list. here's the link to that thread:

 

http://www.latitudes.org/forums/index.php?showtopic=4248 (starting with post #5)

 

Also, what did you mean by him being "transferred back into a nice little boy" after the healing doctor visit? Are you just referring to the tics, or are there behaviors involved too?

 

Hope you had a relaxing weekend! Was there alcohol involved? :lol:

 

Faith

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abbe,

Hi, when you say your sons tics are gone from using the Benadryl, do you mean all his tics are gone? You said before in one of your posts that your son had eye rolling. Is that totally gone? Just wondering because my son has eye rolling? Are you still giving your son the Benadryl? Thanks Char...

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Hello there,

 

I just wanted to through a quick word out. I tried the TravaCor Jr. over the past summer based on one of my Naturopathic Doctor's recommendation. I did some research ahead of time and was concerned about the L-theanine because it seemed to increase dopamine. But I went ahead and tried it anyhow. Sure enough it seemed to increase the tics. I also know Bonnie, on the forum, tried it for her son and saw the same thing.

 

But with that said if your son does not have the high dopamine, because the tics are being caused by some other reason, perhaps it will work for you. Both Bonnie son and my son have tics generated from too high of dopamine. The Neuroscience Test showed elevated dopamine for both of the boys.

 

Also with all of those supplements the doctor wants to try out just a small word of advice. I would do one at a time. With about a two week space in between. Because if you add all that in at once and you will have no idea of what he is reacting to or what he is not. The best thing is to keep a daily journal and make notes. I actually have a system of tracking my son's tics from a 0 to a 10. This way when I look back I can get a better feel of how he was doing each day. Sometimes I would have to make notes tracking him various times of the day. It is so hard because if you do not keep some sort of record keeping, when introducing these supplements, it gets real difficult to remember how they were doing during each phase.

 

Anyhow, hope this helps some.

 

Carolyn

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abbe,

Hi, when you say your sons tics are gone from using the Benadryl, do you mean all his tics are gone? You said before in one of your posts that your son had eye rolling. Is that totally gone? Just wondering because my son has eye rolling? Are you still giving your son the Benadryl? Thanks Char...

 

 

 

Hello again

 

 

Thanks for your responses. As far as Nicky's tics being gone yes they went away again, eye roll, neck tick, stomach tick, his throat tick has been away for some time. I am not interested in trying anything like trava cor if it will increase tics. I have already added carnitine, b5, vit.e, half milligram melatonin and now the nystatin. I am not planning on using the benedryl for more than one or two nights more just want his cold to subside. I believe that Nicholas is benefiting from getting more sleep not from the histamine level but that is just a mothers guess only time will tell. I can't believe how much calmer and happier I am when he is tic free. This whole thing seems like a nightmare to me at times and when he is tic free I can forget it ever even started. Just last Tuesday night he was at the dinner table and could not stop his neck tic crying to me that his neck hurt and please make it stop.......

 

abbe

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abbe,

Hi, when you say your sons tics are gone from using the Benadryl, do you mean all his tics are gone? You said before in one of your posts that your son had eye rolling. Is that totally gone? Just wondering because my son has eye rolling? Are you still giving your son the Benadryl? Thanks Char...

 

 

 

Hello again

 

 

Thanks for your responses. As far as Nicky's tics being gone yes they went away again, eye roll, neck tick, stomach tick, his throat tick has been away for some time. I am not interested in trying anything like trava cor if it will increase tics. I have already added carnitine, b5, vit.e, half milligram melatonin and now the nystatin. I am not planning on using the benedryl for more than one or two nights more just want his cold to subside. I believe that Nicholas is benefiting from getting more sleep not from the histamine level but that is just a mothers guess only time will tell. I can't believe how much calmer and happier I am when he is tic free. This whole thing seems like a nightmare to me at times and when he is tic free I can forget it ever even started. Just last Tuesday night he was at the dinner table and could not stop his neck tic crying to me that his neck hurt and please make it stop.......

 

abbe

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Hello all

 

 

I just looked at Nicks Dopamine level it says 264.5 They give you next to that an optimal range and a therapeutic range. His number falls under therapeutic. i am not sure how high this is? Do you remember your sons number?

 

 

abbe

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Hello all

 

 

I just looked at Nicks Dopamine level it says 264.5 They give you next to that an optimal range and a therapeutic range. His number falls under therapeutic. i am not sure how high this is? Do you remember your sons number?

 

 

abbe

 

 

 

 

OK so I just got Nick off to school and here are all of the results from Neuro science Epinephrine is elevated Norepinephrine is normal, serotonin is suboptimal-low,dopamine is elavated and gaba is elavated

 

 

Does anyone have similar results for there children? themselves? what worked? what didn't?

 

 

abbe thanks again

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Hi Abbe

youhad asked me to take a look at this so here is a quick comment:

 

I dont know anything re the NeuroScience supps so cant comment on those but I do kow that tyrosine can lead to increase in TS tics because it stim dopamine. If your child doesnt have TS then I dont know if it would trigger tics

 

I personally prefer Candida Clear by NOW to Nystatin, but then my preference is always to go the natural route before a rx drug. I have heard mixed reports on Nystatin...some love it, some hate it

 

I like kefir as a natural way to provide probiotics/good gut flora but not sure if it would be ok re the dairy allergy. I have been told that people who are lactose intolerant can still safely use kefir but check with your doc first on that

 

methylB12 is really good stuff and vit E is too

 

we dont use glutathion so no comment there

 

my son can only tolerate the 300 MICROgram melatonin on occasion and so even .5mg would be too much for him

I personally feel it is best to use as little of it as possible and not too often.

 

as mentioned on the other thread, my son used only L-carnitine not the acetyl form

 

if there was anything else you specifically wanted input on just let me know

I am in one of those mega busy work modes so tending to skim posts and may have missed something ;)

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Hello,

 

I just wanted to let you know I looked up Daniel's Neuroscience results to give you an idea. His Dopamine was at 266. The optimal is between 110-175 for the day. The therapeutic range, from what I understand, is for when the doctor gives you a supplement to increase that particular neurotransmitter and you would want the neurotransmitter to be up that high while on the supplement for it. The therapeutic range was between 200 to 350. But in Daniel's case since he is not on a supplement to increase dopamine, his is naturally way too high.

 

Unless your son is on something to increase his dopamine, which I would doubt, his dopamine is running naturally high. From the very minimal knowledge that I have I think they add in supplements to increase dopamine I believe for Autistic children. So that would be one example of a child which you would then look at the therapeutic range since that is a supplement being added into the child's diet.

 

I believe on Neuroscience, after being on their program for 6 months or so, they ask you to take the test again. This way they can look at the therapeutic range and see how the supplements are working for the patient.

 

I also wanted to mention you may want to talk to your doctor about using N-Acetylcysteine (NAC) instead of the glutathine. They both have the same effect in helping the liver process through toxins and neurotransmitters but my doctor told me the NAC in the long run is more effective. From what I understand your body will take the NAC and turn into glutathione. I just seem to remember him telling me, and I may be wrong, that people's bodies just don't respond as well in just directly putting the glutathione in. I will tell you the NAC has been very effective for my son and several others on this forum. I am giving Daniel a fairly high amount. He is 8 years old and he is getting on average 600 mg's in the morning and 600 mg's at night. Run it by your doctor and see what he or she thinks.

 

I know it is so overwhelming but just know you are doing all the right things for your son. Don't get discouraged. I can tell you it took me about 1 1/2 years of reading (especially on this forum), doctors visits, journaling foods, buying and trying various supplements to come up with a plan that works for Daniel. If I stick to it, which is the hardest part (meaning avoiding all the foods he is sensitive too), he is tic free. I do not regret a second of all the time I put into it because I have seen great results. If you are interested here is a link to all the supplements I am currently giving him you can check it out here. The supplement information is a bit down in the first posting http://www.latitudes.org/forums/index.php?showtopic=4194 .

 

I read something a while back on tics that really helped put a lot in perspective for me. It may have even been in Shelia Rogers book "Tics and Tourettes". But the basic premise what to think of tics similar to migraines. People get migraines for many different reasons. It is not just one set reason that sets off migraines in people. So you have to find the root of it for that particular person. It is the same thing with tics. There are many different variables that can ultimately case tics and it is discovering for that particular person which one or more of the variables needs to be addressed to help alleviate what is going on. But ultimately the tics are a response to something not being right within the system of the body. They are not happening just because like some doctors would like to say.

 

God Bless and hang in there. Remember what an awesome mom you are for doing what you are doing for him. It is so easy to get down on ourselves when we don't have the complete picture yet.

 

I have been praying for you and I will continue to pray for answers for you and your son.

 

Carolyn

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Carolyn,

 

 

I am so glad you responded. I feel like we are in similar situations because our boys are the same age. What I don't understand is why the dopamine levels are high and how to lower them. The Glutathine that Nick is on is a liqued form and it says it is being patented. I had him on the NAC awhile back and thought I saw some good results I had e mailed you then. I have still been giving Nick a teaspoon of benedryl at night (he has a cold). He has been tick free ( although I can still see a squirm here or there) again since the weekend (since on benedryl) don't know if it is a coincidence or not. I guess we will see because I will take him off in the next day or two. I am a little overwhelmed still because I like to solve things quickly. I have used herbs and vitamins my whole life and so have my kids so it frustrates me that I can't figure this out. I think my biggest concerns right now are do I keep him on nyastatin for the yeast or switch to an herbal program. (He already takes his herbs in applesauce and is fed up) Also is it safe or ok for him to have .5 mill. of melatonin to help sleep. the kid is so restless. His Gaba is high so that is out.

 

 

 

any more comments are appreciated. Take care...

 

 

abbe

 

 

 

 

 

Hello,

 

I just wanted to let you know I looked up Daniel's Neuroscience results to give you an idea. His Dopamine was at 266. The optimal is between 110-175 for the day. The therapeutic range, from what I understand, is for when the doctor gives you a supplement to increase that particular neurotransmitter and you would want the neurotransmitter to be up that high while on the supplement for it. The therapeutic range was between 200 to 350. But in Daniel's case since he is not on a supplement to increase dopamine, his is naturally way too high.

 

Unless your son is on something to increase his dopamine, which I would doubt, his dopamine is running naturally high. From the very minimal knowledge that I have I think they add in supplements to increase dopamine I believe for Autistic children. So that would be one example of a child which you would then look at the therapeutic range since that is a supplement being added into the child's diet.

 

I believe on Neuroscience, after being on their program for 6 months or so, they ask you to take the test again. This way they can look at the therapeutic range and see how the supplements are working for the patient.

 

I also wanted to mention you may want to talk to your doctor about using N-Acetylcysteine (NAC) instead of the glutathine. They both have the same effect in helping the liver process through toxins and neurotransmitters but my doctor told me the NAC in the long run is more effective. From what I understand your body will take the NAC and turn into glutathione. I just seem to remember him telling me, and I may be wrong, that people's bodies just don't respond as well in just directly putting the glutathione in. I will tell you the NAC has been very effective for my son and several others on this forum. I am giving Daniel a fairly high amount. He is 8 years old and he is getting on average 600 mg's in the morning and 600 mg's at night. Run it by your doctor and see what he or she thinks.

 

I know it is so overwhelming but just know you are doing all the right things for your son. Don't get discouraged. I can tell you it took me about 1 1/2 years of reading (especially on this forum), doctors visits, journaling foods, buying and trying various supplements to come up with a plan that works for Daniel. If I stick to it, which is the hardest part (meaning avoiding all the foods he is sensitive too), he is tic free. I do not regret a second of all the time I put into it because I have seen great results. If you are interested here is a link to all the supplements I am currently giving him you can check it out here. The supplement information is a bit down in the first posting http://www.latitudes.org/forums/index.php?showtopic=4194 .

 

I read something a while back on tics that really helped put a lot in perspective for me. It may have even been in Shelia Rogers book "Tics and Tourettes". But the basic premise what to think of tics similar to migraines. People get migraines for many different reasons. It is not just one set reason that sets off migraines in people. So you have to find the root of it for that particular person. It is the same thing with tics. There are many different variables that can ultimately case tics and it is discovering for that particular person which one or more of the variables needs to be addressed to help alleviate what is going on. But ultimately the tics are a response to something not being right within the system of the body. They are not happening just because like some doctors would like to say.

 

God Bless and hang in there. Remember what an awesome mom you are for doing what you are doing for him. It is so easy to get down on ourselves when we don't have the complete picture yet.

 

I have been praying for you and I will continue to pray for answers for you and your son.

 

Carolyn

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Cheri,

 

 

 

 

 

thanks for your responses. I am still weighing out all of my options and trying to figure his program out. I appreciate your comments.

 

 

 

abbe

 

 

 

Hi Abbe

youhad asked me to take a look at this so here is a quick comment:

 

I dont know anything re the NeuroScience supps so cant comment on those but I do kow that tyrosine can lead to increase in TS tics because it stim dopamine. If your child doesnt have TS then I dont know if it would trigger tics

 

I personally prefer Candida Clear by NOW to Nystatin, but then my preference is always to go the natural route before a rx drug. I have heard mixed reports on Nystatin...some love it, some hate it

 

I like kefir as a natural way to provide probiotics/good gut flora but not sure if it would be ok re the dairy allergy. I have been told that people who are lactose intolerant can still safely use kefir but check with your doc first on that

 

methylB12 is really good stuff and vit E is too

 

we dont use glutathion so no comment there

 

my son can only tolerate the 300 MICROgram melatonin on occasion and so even .5mg would be too much for him

I personally feel it is best to use as little of it as possible and not too often.

 

as mentioned on the other thread, my son used only L-carnitine not the acetyl form

 

if there was anything else you specifically wanted input on just let me know

I am in one of those mega busy work modes so tending to skim posts and may have missed something ;)

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