momofgirls Posted September 2, 2009 Report Share Posted September 2, 2009 Hi I am new to the forum but have been spying on you guys for a while. I am always too overwhelmed to put the energy into posting but here I go... My daughter started ticcing a year ago and she is now 6. We are seeing a DAN dr and have found a lot of underlying problems. She doesn't have the yeast overgrowth like so many kids and had a good amount of good bacteria in her gut. However she did have H pyloria. I don't know at this point if it is related to her tics. She has food sensitivity to egg, wheat, and dairy. We saw great improvement 2 wks after starting the diet. Its really hard though we have been on it for 5 months. She also tested high in organic solvent toxins like xylene, styrene, benzene, and toluene! Dr has her on amino acids and B vits. Then they started a course of herbs for the pylori. We finished the herbs and went to a GI specialist to recheck stool and for possible antibiotics. Even after finishing the herbs her tics have not improved in fact they maybe a little worse. GI dr ran a Quest stool test for pylori and it was negative. I was so hoping it was actually still there so I could get antibiotics. I didn't really believe the herbs would do the trick. So now I don't know if I should believe the Quest test or maybe the pylori had nothing to do with the tics and the herbs killed the pylori and we are still left with tics. What do you guys think? I am desperate and heartbroken. Does anyone ever really "cure" their child or is this diet and supplement forever? Has anyone ever heard of pylori being related to tics and leaky gut? It seems most kids have the yeast but my daughter does not. Lastly I guess tourettes doesn't run in the family as far as I know. Do you guys think it matters and is there a difference in the prognosis? I am exploring medication options for my daughter now just for some relief but will continue to work on her health. But from what I read this stuff goes on for years. Does anyone ever get better? Any words of wisdom are welcome Kim Link to comment Share on other sites More sharing options...
Chemar Posted September 2, 2009 Report Share Posted September 2, 2009 Hi and welcome where I cant claim that our son with genetic TS is "cured" by dietary and supplement modifications, I certainly can attest to the dramatic improvement this approach has made for him. we do have other members whose children's tics have fully resolved (ie not TS) from dietary changes or other treatment resolving their tic triggers Caryn can attest to this going gluten free Link to comment Share on other sites More sharing options...
momofgirls Posted September 3, 2009 Author Report Share Posted September 3, 2009 Chamar thanks for your response. What do you make of the H Pylori? Do you know anything about this bacteria or if it has ever been associated with tics? I was thinking that perhaps the bacteria caused dysbiosis and spiked the allergies to gluten egg and dairy. Does that make sense? Link to comment Share on other sites More sharing options...
Chemar Posted September 3, 2009 Report Share Posted September 3, 2009 any infection can trigger more tics so yes, H pylori could too IMO Mastic gum (mastica) is an excellent way to get rid of pylori and DGL-liquorice root (must be DGL) heals the ulcerated areas caused by pylori. which herbs did they give to treat the pylori? I noticed you mention that the Dr has her on "amino acids" do you know which? I ask because some amino acids can increase tics for people with TS has she been treated for the solvent toxicity? Link to comment Share on other sites More sharing options...
momofgirls Posted September 4, 2009 Author Report Share Posted September 4, 2009 Hi chemar They used berberine and something called GI revive which I think has the mastic gum and DGL in it among others. I felt like she did well on the herbs but then worsened towards the end. Now that we have completed them she is back to baseline again. She also still complains of frequent tummy aches. She is taking taurine, glyceine, argenine and 5HTP. Also something called BAM which is a balanced blend. Lots of B vitamins too. They said these supplements would naturally support her detox but it was not a true detox. We have currently stopped all supplements and are retesting organic acids, amino acids, and doing a porphryns test to check her levels. Honestly I don't see any difference in tics with or without the supplements. Colleen from the PANDAS forum suggested we rule out strep. I had her titers checked a while back and they were negative so I moved on but colleen suggested we look further into it because kids don't always test positive. We have talked to the dr about a trial of antibiotics to see if she reacts. I hope this helps. Thanks again hope all is well with your family any infection can trigger more tics so yes, H pylori could too IMO Mastic gum (mastica) is an excellent way to get rid of pylori and DGL-liquorice root (must be DGL) heals the ulcerated areas caused by pylori. which herbs did they give to treat the pylori? I noticed you mention that the Dr has her on "amino acids" do you know which? I ask because some amino acids can increase tics for people with TS has she been treated for the solvent toxicity? Link to comment Share on other sites More sharing options...
laurena82 Posted September 6, 2009 Report Share Posted September 6, 2009 Does anyone ever get better?Any words of wisdom are welcome Oh....more {{{{{{{hugs}}}}}}}}}} ...sigh.... I dealt with all of this ...eh....? 20 years ago..... ...sigh.... my son is 24 1/2 years old now....and NOT bothered by tourettes anymore...YEA! So....yes....it DOES (can ) get better.... bactk then, ...latitudes was barely a newsletter yet....I think it started out as an "alternative" treatment arm of tourette foundation....then they kinda/sorta didnt want much to do with it...and it became lattitudes newsletter......eventually a website..... after I was no longer involved. but...anyhow...my son had TS at pre school ages....I "realized" it/had it diagnosed at about age 7....spent from age 7 to 9 researching "alternative" treatments..... ages 9 to 11 doing them (supplements and food allergy avoidance) age 11 to 14 doing clonidine (catapres...it worked on motor but not vocal tics) age 11 to ? 13 with speech therapy for vocal tics/stuttering age 14? quit catpres ....and he was OK... TODAY....... age 24....no tics/no stuttering......a great kid/young man YES there is hope....... I'd like to help anyone I can here... It is SOOOOOO painful as a mom to see it all happening to your child....... ((((((((((((((((((((((((((((((HUGS!!)))))))))))))))))))))))))))))))))) to all!! !! !! Link to comment Share on other sites More sharing options...
momofgirls Posted September 6, 2009 Author Report Share Posted September 6, 2009 Laurena82 Oh thanks for that response. It made me cry. Knowing there is hope is comforting. It just feels like such a long road. Kim Does anyone ever get better?Any words of wisdom are welcome Oh....more {{{{{{{hugs}}}}}}}}}} ...sigh.... I dealt with all of this ...eh....? 20 years ago..... ...sigh.... my son is 24 1/2 years old now....and NOT bothered by tourettes anymore...YEA! So....yes....it DOES (can ) get better.... bactk then, ...latitudes was barely a newsletter yet....I think it started out as an "alternative" treatment arm of tourette foundation....then they kinda/sorta didnt want much to do with it...and it became lattitudes newsletter......eventually a website..... after I was no longer involved. but...anyhow...my son had TS at pre school ages....I "realized" it/had it diagnosed at about age 7....spent from age 7 to 9 researching "alternative" treatments..... ages 9 to 11 doing them (supplements and food allergy avoidance) age 11 to 14 doing clonidine (catapres...it worked on motor but not vocal tics) age 11 to ? 13 with speech therapy for vocal tics/stuttering age 14? quit catpres ....and he was OK... TODAY....... age 24....no tics/no stuttering......a great kid/young man YES there is hope....... I'd like to help anyone I can here... It is SOOOOOO painful as a mom to see it all happening to your child....... ((((((((((((((((((((((((((((((HUGS!!)))))))))))))))))))))))))))))))))) to all!! !! !! Link to comment Share on other sites More sharing options...
laurena82 Posted September 7, 2009 Report Share Posted September 7, 2009 She has food sensitivity to egg, wheat, and dairy. We saw great improvement 2 wks after starting the diet. Its really hard though we have been on it for 5 months.Oh...hugs to you! Sounds SOOOO familiar to what I went through with my son....yes...it works...but, sigh..SOOOOO difficult to maintain in the real world. If you havent tested corn/fructose/etc, I'd suggest trying that also....as my son had the eggs, dairy, wheat.....but turned out corn/corn sweeteners were the HUGE triggers.... And corn is in almost EVERYTHING....sometimes it just says "food starch" ....but that is corn based....sigh.... if others are having issues with corn allergies...I do have some links to info on all these "other" names for corn products.... maybe there is a place on this website to post this kind of info? BEST WISHES! PS: Just saw this: Laurena82Oh thanks for that response. It made me cry. Knowing there is hope is comforting. It just feels like such a long road. Kim Believe me, reading all these posts brings back such feelings..... you know, your kids grow up and move out (mine have now)...yet you still worry about them forever..... I'd sure like to help anyone here any way I can. It IS a long road....((((((more hugs!!))))))))))) Link to comment Share on other sites More sharing options...
patty Posted September 8, 2009 Report Share Posted September 8, 2009 laurena82, So glad you log on & share your experience w/us. Thx for your encouragement. Pat Link to comment Share on other sites More sharing options...
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