Vocal tics and options....

[Sunshine]

Hello everyone (old and new)!

 

I shall call you all angels, as your posts (past and present) are so valuable in helping us (and others) solve our puzzles. Thank you!

 

My son continues to improve. I can hardly attribute the differences to specifics. Is it lack of t.v, antibiotics, supplements, diet...?? We will find out as time goes by. We're just glad that things are improving. Yeah! We are certain that allergy testing for foods will bring continued improvement.

 

Interesting note: I gave my son his calcium/mag at night for the first time yesterday. He slept right through the night! He hasn't done that for well over a year. Coincidence? Maybe. Or maybe it's another piece to our puzzle. Thanks for the advice ad_ccl!

 

Good luck to wewillbeatthis... a 20 page report to analyze... hope you find some answers. I am not yet familiar with the TRIAD blood/urine test so I look forward to reading your posts and learning.

 

Cheers!

[wewillbeatthis]

Kim,

 

I will be sure to get you that info from the Metametrix TRIAD test results. (I just don't have the report handy right now!)

 

Re whether it requires a Dr's signature, I do not know for sure. In our case, our MD recommended it and gave us a prescription which was what we used to have the hospital draw the blood, freeze it (and the urine sample) and mail it to Metametrix, etc. That's a good question, though... could the answer be on the Metametrix website? (Interestingly, our MD forewarned us that some hospitals would not handle/administer the TRIAD kit for some reason -- I wonder why? Hmmm.)

 

Sunshine -- glad to hear you and your child had a good night! Those are blessed events, indeed!

 

I will report more after our appt tomorrow, for all who may be interested...

 

Best wishes to all,

Wewillbeatthis

[wewillbeatthis]

Hi Wewillbeatthis,

 

I was wondering if you could answer a few questions for me. If you had urine through Metametrix, could you share the # of the reading for D-Arabinitol that your son showed? I'm assuming this would have been tested. On my test it was found under the yeast/fungal section. My son showed 51 for this marker. ...

 

 

Kim,

I just looked at the Metametrix report and my son posted a 23 on the D-Arabinitol reading, which (if I am reading the report correctly!) puts him in the first quintile (where the apparent break-point in the 4th and 5th quintiles was a reading of 57). Hope that helps! It is all still Greek to me... hopefully, we'll learn more at our Dr.'s appt tomorrow.

Best to all,

Wewillbeatthis

[kim]

Wewillbeatthis,

 

Thank you, thank you, thank you. I too will be looking forward to hearing how your appt. and explanations of your test results go. Do you know shorthand? Take fast notes? Interesting that your D arabinitol is low. Maybe if your son has any gut issues, it's more along the lines of bacterial/ clostridia?

 

Since the urine test for yeast/fungal/bacterial at least, is something that can be ordered and performed without a Dr., it may be really helpful here. The Alt. Dr. I saw was not very interested in the results of my Met. test, as he was more fimiliar with the Great Smokies stool test.

 

I have been at this for a little over a year, but compared to some that have had many tests, and really good Dr.s guiding them, I'm still a newbie too, although a newbie that has seen some pretty good results.

 

I sure hope you get some useful info. on how to help your son today!

 

Kim

[JAC]

Wow! I really feal for you. My son's vocal tics have been so disruptive that people make comments about the "barking sound", and he was almost removed from a children's matinee at a local performing arts center because someone was annoyed by his disruptive noise (at a children's matinee!!).

 

My son took Orap, which really helped to decrease his vocal tics. SIDE EFFECTS were unbearable. Once we realized that the side effects were making him so uncomfortable and not the TS, we took him off.

 

Since we removed dairy/sugar/environmental and personal perfumes, he has gone from 10-20 vocal tic (barks) per minute to fewer than 2. We were simply amazed that in such a short time we could see such change in him. I took the advice of a friend, whose son has cerebral palsy, and from my aunt since my first cousin is autistic. It was excellent advice!

 

I've posted several times tonight. I've said the same thing in each posting. (It's been a while since I've logged on! I've been so busy with my son!) Good new is so great to pass on though!

[wewillbeatthis]

Wewillbeatthis,

 

Thank you, thank you, thank you. I too will be looking forward to hearing how your appt. and explanations of your test results go.

 

Hello, Kim and others

 

Quick report on our recent visit with our naturopathic/homeopathic MD this week, for those who may be interested.

 

She (the MD) began by explaining that she'd spent 45 mins. on the phone earlier that day talking with the folks at Metametrix so that she'd better understand the results of my son's tests (she is admittedly somewhat new to their reports). In short, my son has a high sensivity (Q: what's the difference between that and an allergy? ) to egg and milk (and less so to gluten), so we have strarted the removal of those (to the greatest extent possible -- we are trying to be somewhat realistic!) 2 days ago, along with some supplements (fish oil, complex B and multivitamins) that she recommended.

 

I can't say that we had the highly detailed, technical discussion with the MD that I was anticipating -- while it was an 1hr 45 min session, she spent most of it was my wife, me and my son "getting to know" us and getting some direct feedback from our son about what he eats, how he feels, etc. Not that I am complaining about this approach(!), but the point is (sorry, Kim!) I did not have many of the technical questions asked/answered yet....

 

In sum, she said (in laymans terms -- and that's all I know so far!) that his body was not having "gut" problems, but that he was reacting to the sensivities noted above and was also lacking in some of the essental vitamins that are necessary to assist his body in breaking down proteins, etc. Because we have been trending in the right direction (his last few weeks have been better, overall), we agreed to move slowly and try our best at making some of these dietary changes and following a modified rotation dite for 4 wks -- then we're going back to the MD.

 

Interestingly, yesterday he did have a bad day (esp with the OCD stuff) -- we are trying to figure out why. My son thinks it was the supplements (I don't think so -- I think he just wants any excuse not to take them), but I think it was the fact that we'd used a gas-motor leaf blower to clean out our garage yesterday morning (he was helping) and the exhaust fumes were a little intense, even with the garage doors open... I wonder if that wasn't the culprit... hmm. Where is Sherlock Holmes when you really need him??

 

Best to you all,

Wewillbeatthis

[Chemar]

Hi wewillbeatthis

glad you are getting some answers

 

PLEASE NOTE that some people with TS/tics tic MORE when given fish oil as their source of omega-3 EFAs

 

this may be happening with your son and so you may want to try substituting the fishoil with FLAXSEED OIL( actually best to get a combination of flaxseed/borage and evening primrose oils)

 

My son tics increase on fish oil but not on flaxseed combos, even tho he can eat fish with no problems. This is documented for many other people too.

[wewillbeatthis]

Thank you, Chemar!

 

Yes, we're now assuming that the fish oil is the "guilty party" for his recent step backwards w/re to his tics/OCD (or least guilty until proven otherwise at this point), based on what you've posted here and given what we've read in the other strings re fish oil. If the fish oil were the source of his recent setbacks, is it reasonable to think that a single dose could have lingering effects for a few days?

 

We're thinking that if his setback continues for a few mores days, maybe there is another guilty/responsible factor to be uncovered... hmm.

 

Thanks to all,

Wewillbeatthis

[Brenda1972]

wewillbeatthis,I gave my daughter fish oil for about 8 days and it caused tics.She stopped taking them a little over 2 weeks ago and her tics are just now starting to go away.I think you should give it at least a week to see if it was the fish oil.It does stay with you for awhile.Brenda

[wewillbeatthis]

Brenda,

Thank you for sharing your experience...

 

While I know it is ideal to change only one thing at a time so we can be sure to see what is affecting what, in our case we did the following simultaneously on Day 1: (1) eliminated dairy and eggs, (2) started on a good multi-vitamin (without dyes, etc.), and (3) started the fishoil.

 

After Day 2 when our son (boy, age 12) had a sudden "step backward", we eliminated the fish oil. After Day 3 -- with the same step backward -- he begged us to stop the multivitamin, which he thought was also contributing to the returning tics/OCD (personally, I'm less suspicious of the multivitamin than the fish oil). Now, on Day 4, all we're keeping in place (for the time being) is the elimination of the dairy and eggs. (It's so hard to keep the cooperation going )

 

I think we're going to try to explain to him that if, in fact, his body is cleansing itself of the dairy and eggs sensitivity, it would be normal to have a "withdrawal" type of reaction/temporary setback for the first few days...

 

Chemar, Kim, Brenda and others -- do you think that is a fair and accurate statement??

 

Thanks and bless you all,

Wewillbeatthis

[mmazz]

Hi,

 

It is called the healing crisis. I am all to familiar with it and that is one reason why you must take things slowly. I know as a parent all you want to do is quickly find a cure but for the most part I see that this journey is a mulit-piece puzzle that through time and trial and error only things can be discovered. I am 14 months on this journey and I am still finding things that my child is sensitive to. Since I started construction we have had many things including vocal stuff. So whatever it is paint or water proofing materials it seems to trigger a reaction. The more harsh the smell or dusty the house becomes the more he tics. Fish oil is a tricky thing. My little one was just down right mean when he was on it. So I backed off and his emotional behavior changed before my eyes. When he eats white breads, pasta, etc. in large quantities he tics. So with all of this rambling I guess I am telling you to take it slowly. Give half doses of supplements and work you way up and be on it for a week or two before adding to the mix.

 

Good luck and if I can help just post.

 

Be Well;

 

Marie

[kim]

wewilbeatthis,

 

I'm really curious as to why you would have strong IgG reactions (food sensitivities) if the intestinal tract is in good shape. I'm not disputing this, it's just that everything I have read in relationship to food allergies/sensitivities is based on the premise that there is permeability of the gastro tract where the undigested food particles pass through to the blood stream.

 

You may want to read through this site. http://216.114.78.114/webcenter/sites/hni/ As Mazz pointed out in an earlier post, digestive enzymes are a necessary part of digestion, and this site may provide some answers as to why you have this problem without any "leaky gut." I totally agree with her on the point of getting any healing/help with natural foods and diet if possible. The juicing Mazz is doing is wonderful, but not an option for our limited eater. I have used the enzymes in the past from Houston, and am using them now again for the boys.

 

If your test showed only the need for a good multipurpose vitamin, you may want to look at this site. https://www.juiceplus.com/nsa/pages/Home.soa This is a product that I have always been interested in, but couldn't find the info on what they actually contained. I'm told it IS on the site, but I've never been able to find it. Haven't looked in a long time though.

 

I noticed this saved to my favorites when I was looking for the Houston site

http://www.metametrix.com/TestServ/default...ID=40&TabID=117

 

Looks like a pretty comprehensive test. Was the dairy and egg sensitivity, and Omega 3 (fish oil) and a multi vit. all that were recommended due to these test results, or just a starting point with other supplements yet to come?

 

Dairy is said to have an addictive quality. I think what you told your son is a fair statement. I think this article talks about the caisen addiction, the opiate effect, and gives a good overview of a lot of the things that are helping our kids too. Edit...removed because it's not the article I meant to post. I'm looking for the right one

 

I would love to hear more specifics of your sons test results if you get a chance. I see where Methylation sufficiency status, is listed. Were the values here in the green? Zinc/copper ok?

 

Kim

[Guest]

 

Re whether it requires a Dr's signature, I do not know for sure. In our case, our MD recommended it and gave us a prescription which was what we used to have the hospital draw the blood, freeze it (and the urine sample) and mail it to Metametrix, etc. That's a good question, though... could the answer be on the Metametrix website? (Interestingly, our MD forewarned us that some hospitals would not handle/administer the TRIAD kit for some reason -- I wonder why? Hmmm.)

 

 

 

I wanted to mention that to order a kit from Metametrix it requires a doctor. You can get it without a doctor's signature from direct labs. Here's their website: http://www.directlabs.com/triad.php

I suggest if you can get it from a doctor to do that because you usually save money and its more likely to be covered by insurance.

 

Carolyn

[wewillbeatthis]

Kim,

 

Thanks VERY much for the response -- your questions alone reveal to me how painfully little I really understand at this point!

 

I will post some more detail from our test results soon (when I have them handy), as well as try to get that second "sit down"with our MD to learn more about what she gleaned from those results (and what she learned in talking with the folks at Metametrix). Hopefully, I can ask her more intelligent questions next time... especially with your help!!

 

Thx again and bless you all,

Wewillbeatthis

[Sunshine]

Hello all!

 

I have been swamped at work, and have only had time to read briefly (not post). Does anyone else feel like this search for answers constitutes a full time job (albeit very worthwhile!)? I'm overwhelmed, but taking the sage advice of "take care of yourself". It's NOT easy!

 

Chemar - Thank you for bumping up the threads for us newbies. I've bookmarked it for easy access.

 

Wewillbeatthis - I too realize that I have lots to learn. I read your posts with such interest and compassion as we seem to be in a similar boat. I'm sorry that I can't offer advice, but I do offer best wishes to you and your family!

 

Anyone - My son finished his antibiotics for strep last Friday. We have seen an increase in clothing sensitivity (socks and sleeves), emotional lability (hyper ups and sad downs), tics, and interrupted sleep. I am more convinced than ever that he is a PANDAS boy. The naturopath wants to boost his immune system by giving him more of what his body already produces. In theory, his body should start to produce more of what he doesn't have. Has anyone tried this or heard of this approach before? Any feedback would be greatly appreciated!

 

Cheers!