what if you can't find a trigger

[mommy11]

3 weeks ago we had our appt with our DAN doc. Everything under the sun has been tested. So far nothing has come back abnormal. What if there are no allergies, yeast issues, sensitivities etc....Is medication inevitable?

[Andy]

3 weeks ago we had our appt with our DAN doc. Everything under the sun has been tested. So far nothing has come back abnormal. What if there are no allergies, yeast issues, sensitivities etc....Is medication inevitable?

 

 

You may want to test for heavy metal poisoning that may have come from vaccination shots and you may want to test amino acid, vitamins and gluthione levels.

 

Why treat with medication if it turns out that your child body just might need its' chemisty boosted with supplements.

 

Good luck and hang in there.

[mommy11]

Amino acid levels were checked and hair for metals...i am just at my wits end. i want to help my son and i just feel helpless right now...

[Andy]

Amino acid levels were checked and hair for metals...i am just at my wits end. i want to help my son and i just feel helpless right now...

 

 

The hair might not show the heavy metals for that is for more recent exposure. The heavy metals over time sink into the muscles, the fat, the stomach/intestinal lining, and the bones of the body. There is a challenge test for heavy metals that puts a chelation into the body to pull it out. This treatment has been developed in the USA during World War II for the painters of warships. Hence the term"get the lead out" came from. It also has been developed in China and Russia to remove toxic metals like mercury that is used for most dirty bomb warfare. mustard gas as an example. However, if your child does not have a yeast issue then you might want to try a more natural detoxer like NDF or Chlorophyll. Chemar has had good results with the second one that I mentioned. Ask your Dan doctor about it.

 

I just want to add that there is no one treatment fits all with this issue.

It may take time and trial and error to find the right direction but don't worry in time you will find it as long as you look.

[Chemar]

Hi

if your child has Tourette Syndrome it may well be inherited ?? and where certain triggers make Tourette tics worse, there doesnt necessarily have to be "a" trigger, other than that the gene switched on

 

The best you can do is maintain a healthy diet, do the supplementing that has been shown to help and maybe also try acupuncture etc.

 

Best to just start healthy treatments than to fret over finding a specific trigger.

 

And no, meds are not inevitable, especially if you dont have a clear indication what you are medicating for.

 

I would strongly suggest just optimizing your child's diet and immune system and environment and go from there.....

[Ronnas]

Mommy11...I know I have read lots of your posts but I can't remember the "specifics" of your son...I just wanted to let you know that I really have probably done the least testing of anyone on the forum...we have done very minimal testing and I have relied alot more on my own observation skills. Rather than testing I would suggest trying a food elimination diet. I had to experiment with several essential fatty acids until I found the right combo and as for supplements I added them slowly one at a time to see what was helping and which were not.

 

If I had not seen such improvment with the diet and supplements I would have done more testing like for heavy metals and we did test for yeast but sometimes it is good to go back to the basics of looking at diet and supplements. I can not say enough about Shiela's book...it is fabulous and if you have not read it yet I would highly recommend it as even though I have been at this for a long time with each page I find useful information...

 

Anyways, please ignore me if you have done a food elimination diet etc...I really hope you will see an improvement soon...it has been my own personal decision to not do alot of testing on Kurt. It has worked for us but I know it is necessary for some kids. Again, Sheila's book is well worth the $ and time to read it...take care! Ronna

[Claire]

Mommy11

 

As Chemar commented, if there is a family history, it could be more classic 'TS' versus some of the immune related tic syndromes that can mirror it. It would be impossible to comment on what the issue might be without your listing *exactly* what tests were run and by which labs. Not all DAN doctors run the same tests.

 

Andy is right in that hair metal tests usually give false negatives (I have read up to 90%!). These children have trouble excreting metals, so it doesn't show. Andy commented on the challenge test as one method. As for his comment on glutathione, if you did the Great Plains or Metametrix yeast test, they have a area for glutathione (pyroglutamic) in the toxic area, which if on the low end can hint at metal issues. Low antioxidants on the Spectracell FIA 5000 test would also hint at metal issues. The Great Smokies/Genova has an elemental analysis blood test for metals that can help identify them.

 

There are blood serum tests for zinc and copper that I think are worthwhile, as I do the pyroluria test. Depending on which 'allergy' test they did (IgG for 100's of foods or IgE for just a few foods), Ronna's suggestion on the elmination diet might be worth considering.

 

Good luck.

 

Claire

 

Merry Christmas everyone!!

[Guest]

I wanted to add in that even if there's a genetic connection of TS in your family it doesn't mean alternatives won't work. In my family my dad had an uncle who would clear his through when he got upset, a cousin that clearly has tics, and my dad shows some eye blinking tics when he gets stressed. Even though there seems to be a connection of atleast tics in my family, meds did not work for me, but alternative treatments have worked wonders for me. Good Luck.

 

Carolyn

[mommy11]

My son has had the following tests:

 

Amino Acid-Urine

EEg

Metals-Hair

Yeast-Stool

IgG

Strep Test

Complete Blood Count

 

I have bought Sheila's book...I have tried elimation diet, I am constantly reading up on anything I can get my hands on.

 

I currently have my son on a and am seeing minimal results after 4 weeks:

 

good Multi vitamin extra B no colors etc

Omega 3,6,9

Calcium Mag Zinc Combo

Taurine

 

Again, I feel at a loss. His tics are mainly motor and often. His waning periods are less and less. He has had some shouting vocal tics, but not constant (yet) I just feel so discouraged that I can't find a cause that makes things worse and am being to feel like supplements just won't work for us....

[Andy]

My son has had the following tests:

 

Amino Acid-Urine

EEg

Metals-Hair

Yeast-Stool

IgG

Strep Test

Complete Blood Count

 

I have bought Sheila's book...I have tried elimation diet, I am constantly reading up on anything I can get my hands on.

 

I currently have my son on a and am seeing minimal results after 4 weeks:

 

good Multi vitamin extra B no colors etc

Omega 3,6,9

Calcium Mag Zinc Combo

Taurine

 

Again, I feel at a loss. His tics are mainly motor and often. His waning periods are less and less. He has had some shouting vocal tics, but not constant (yet) I just feel so discouraged that I can't find a cause that makes things worse and am being to feel like supplements just won't work for us....

 

 

The answers are out there and in time you will find them.

We found the stool test for yeast to be useless ourselves. I believe we did an Oats test thru the urine but I would have to check the paper work at home. Our kid has had many tests and over time and research and help from others we realize which tests are good indictators and which ones were a waste of money.

 

 

Do not give up on supplements. Supplements only work when other things are in place and when the right type and dosage are being given.

 

Everything we give our kid was based upon his body's chemistry needs.

The trick is not to over spend on the testing.

[Chemar]

i agree with Andy re the yeast stool test not being the best indicator, especially for those forms of Candida that are outside of the GIT

 

we had specific Candida bloodtesting done at the time when all the tests for the various streps and other viral/bacterial things were being run

 

I would agree it is better to use discretion on running the tests as often careful research will lead us to the right tests based on our child's specific symptoms.

 

I always feel it is so very important to remember that each persons metabolism and other vital physiology is almost unique and so the results and the remedies really will vary greatly from individual to individual

[mommy11]

Along with all of these...appointments, tests etc...My son has said to me, "Mom why are we doing this, I told you my habits do not bother me" Part of me feels like after all of these tests I should let it go and just hope for the best. I feel like maybe all of this is bothering me more than him. I really just want to get some sort of handle on it before it gets any worse.

[jeanchan]

I currently have my son on a and am seeing minimal results after 4 weeks:

 

good Multi vitamin extra B no colors etc

Omega 3,6,9

Calcium Mag Zinc Combo

Taurine

 

 

From my experience, sometimes it is the supplements that trigger the tics. My son reacted to taurine the last time we had him on "supplements trial." I also understand that some people do have allergies to fish oil too.. probably you can look into having your child be tested on these supplements too...

 

Take Care.

 

-jeanchan

[Guest]

Taurine also increased tics for me. Fish oil did too however I do well with flax seed oil.

 

Carolyn

[Claire]

1. The yeast stool test is mostly good for culturing yeast to see what antifungals are effective against it. It gives a ton of false negatives. The OAT (Organic Acid Test) urine test is the most accepted test for yeast--even Blue Cross has Great Plains as a network provider now. Our son was negative on the stool test 2X and he simultaneously had an OAT test done by the same lab which was positive. If your doctor won't order the Great Plains OAT test, you can get one from www.directlabs.com from Metametrics. Direct labs provides the doctor's signature. Both companies also show glutathione levels on that test--a good indicator of trouble detoxing metals.

 

2. The IgG test is worthwhile...how many foods did they test? Did they test gluten/casein also? What lab? So your son was allergic to absolutely nothing? Amazing...assuming that they tested for 300 foods as is common and not just 9-10. He is lucky.

 

3. I have already commented on the hair metals test not being a good diagnostic. Though Dr. Andrew Cutler has a counting rules system to come up with metals issues from that test. Pull out the test and check it against this. I can't comment on false negatives or not for his approach, as I haven't seen stats. http://home.earthlink.net/~moriam/HOW_TO_h...#counting_rules

 

4. In my opinon, many immune tests are missing from this. I wouldn't expect to see issues with blood count or an EEG. Surely some people do have strep issues, and that was worth checking. I am really surprised he did an amino acid urine test as a first round test. Below are some additional tests that I think should be done (our DAN doctor did them) and that we and others here have found positive.

 

pyroluriatesting.com urine test--no doctor's signature.

Labcorp has a zinc/copper test, also a histamine test for methylation issues

Great Smokies elemental analysis blood test. (not perfect, but another way to check for mercury, lead--less risky than the urine challenge)

Spectracell FIA 5000 (no doctors signature needed, but much cheaper if you do because of insurance).

 

Was your child photosensitive (ie did you ever test for screen elimination? I only ask because the kids in that sub-group may have a different set of immune issues. Also, I think that for some of them, some management of this (e.g. LCD monitor) is almost a requirement to keep tics at a manageable level. Just like those really sensitive to artificial ingredients, or chemicals (e.g. a newly painted house or carpeting or molds) need some environmental modification.

 

I haven't posted in a while and do need to disappear again, but I hope that some of this helps you. I should be getting Sheila's book anyday now. I was reacting to your comment that your DAN doctor had run 'every test' and your child was negative to them. He got you started, but missed a lot. DAN doctors aren't specialists in tic syndromes--they are just a great starting point for some. Every parent here has done a ton of their own research and had to educate even their alternative doctors on what they needed. I would be surprised if your child did not show positive to at least one of the tests mentioned in my post here. Just based on everyone else who has posted and what results they have had--most have multiple things. As Chemar said, every child is different and they benefit from and react to different things. Jeanchan's comment on Taurine is one good example.

 

As for whether you should let your child just tic, that is a personal decision of course. It takes a certain skill as a parent to keep this from taking over. But to me, collecting urine at home for example is so non-invasive that I don't consider it a hardship. It is (was) the restrictions that were more troublesome. As for the doctor visits, we found a DAN doctor who only required our child go to the first visit, so we weren't dragging him around all the time. We combined the blood tests so that it was once every 6 months and now once a year--in fact, after 2 years, most of our testing is annual now. We now spend $1000 on tests versus the many thousands we used to spend. We will see what our new insurance covers.

 

At every step of the way, my child would have taken tics over the restrictions and the supplements. But my own view is that the tics indicated a health/immune issue and as a mother it was my responsibility to return him to good health. He has shot up in height, and in great health now--no longer gets sick all the time and his mental stamina is great again. It was worth every bit of effort, including not just the research but constantly coming up with ways to offset the hoops he had to jump through for this issue with other ways to 'spoil' him. I always tried to keep the focus on his health.

 

My son is now a completely well adjusted, happy, popular middle school kid...and without a single tic in over 2 years, His 'restrictions' are minimal now. (food issues and minimal CRT screen viewing. His big 'difference' from his friends is that he takes supplements at home--but even those are compounded so the number of pills is minimized. With the advent of LCD screens, even that is becoming a non-issue as we move forward. Look at the folks here--the vast majority have had a big impact based on their own customized programs. But it did take a lot of time and effort, that is for sure.

 

Good luck.

Claire