wewillbeatthis

Thank you, Kim!!!!!!!!!!!!!!! More weekend reading!!! Bless everyone else struggling through these challenges and bless you (and all of the others!) who are willing to help us so generously and so selflessly! -Wewillbeatthis

Sunshine, I, too, am swamped at work yet find myself (as I am doing right now!) sneaking into this site every so often during the day (or very, very late at night!) because it feels like there is a dark, brooding, threatening cloud over my son that I want so desperately to protect him from.... a sense of helplessness that many, many of this site undoubtedly share. I long for the success stories and input from others... it may be illusory, but it makes you feel like you are doing SOMETHING about it. It is GREAT advice, though, that others have generously given us based on their own experiences... "go slow"..."take care of yourself" .. I now see that if, in fact, this will be a many month-long journey (God willing, it won't be...), then one had better pace oneself. Easier said than done! Best, 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

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

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

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

JAC, I am VERY glad to hear of your son's improvement! And yes, quite a similarity in those stories! While we deeply regret the loss of a *certain* (not all, thank God!) level of trust when we made the difficult decision to tell his teammates, I think he might admit now that it was a relief for him. It's a tall order indeed to expect a 12-yr old to have the presence and maturity to address his friends and classmates about something like this, especially when the sudden spike in things included add'l anxiety for him, etc. Like you, JAC, we've seen a significant improvement since late Dec (except for a few days) -- since then, we have tried to eliminate artificial and synthetic flavoring/colors/preservatives, etc. (see Feingold.com), we have improved the air quality in our home (and gotten rid of his liberal use of body spray!), and had him treated for strep that we didn't suspect until we learned about PANDAS -- with so many changes, of course, we cannot yet point to one factor being the difference-maker (maybe it was blind luck!). We also did some bloodwork and discovered an allergy to egg and milk (and sensitivity 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 our MD recommended. We are keeping our fingers crossed that the few bad days were just blips in the road and that the road is heading in the right direction. Best to all, Wewillbeatthis

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, 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

Dear ad_ccl and Sunshine, On behalf of the many of us "watching in the wings" and hoping for some insights -- thx for your posts and good luck. Hang in there, Sunshine. We're in the same boat as you ("early in the learning") and trying to identify our dragons, too, thru one a one step at a time approach (though I must admit I was the one holding a garbage bag at 3AM and throwing out the Fruit Loops, etc. in our home a few short weeks ago when we were at rock bottom and I was just learning about the potential sources of our son's sudden increase in tics and OCD behavior!). Fyi, we finally got our 20 page report back this week after taking the TRIAD blood/urine test thru Metametrix. We're meeting with our MD (homeopathic/"family wellness" focus) on Thurs to help analyze the same and (hopefully) map out a game plan. Due to other steps we've taken (or maybe due simply to blind luck!), our son has improved somewhat since our lowest point right around Christmas. Wow... we are sooo tired but thankful we have the support of others. So I say: hang in there everyone!! Best regards, Wewillbeatthis

Hello, all I'm relatively new here and I've posted a few other times recently re our 12 yr old son, whose TS and (now OCD) took a sudden spike for the worse in Nov '05 after several years of very mild tics. My wife and would LOVE and appreciate some advice... Sorry for the lengthy post. Background -- In recent weeks, our son has started to do several new, more dramatic tics, including stretching his neck and then proceeding to spin around 2 or 3 times (he also now touches his shins and the floor alot, as well as pretty mild verbal grunts). We're trying to get educated (e.g., Sheila's book) and are in the process of waiting for results from some blood/urine tests (called TRIAD, thru a clinical lab called Metametrix in Atlanta) that were ordered by a homeopathic MD were getting started with... Hopefully, we'll learn from that if his body needs certain things, needs to rid itself of certain things, or if he has allergies we're unaware of, etc. We've also tried to take steps to clean the house better (including HEPA air purifiers) and are trying to ease the whole family into the Feingold Program foods to eliminate artificial flavoring, synthetic preservatives, dyes, etc. Lastly, we learned some about PANDAS and had him tested 10 days ago (even though he didn't have any classic strep symptoms) and learned that sure enough, he DID have strep in his system. He has just completed the 10 treatment of amoxicillen. We're also scheduled our first appt with a pediatric nero named Dr. Erenberg (who we've heard is highly regarded in the study of TS) at the Cleveland Clinic next month. So, here's where we'd love some thoughts/help from others out there -- things were so bad over the holidays that, in late Dec., I addressed his 6th grade baskteball team (and their parents) during a time when our son was NOT there. It was a tough decision, but we wanted to educate them about his condition and ask for there support. They (and their parents) have been great. However, my wife and I feel like we betrayed our son's trust in us in that we addressed his team/friends without him knowing it -- he did NOT want us to do that. We knew he'd be upset, but we concluded that sharing the information with his teammates (which is about 25% of his 6th grade class) was important and would, eventually, take much of the stress off of him in that he would not have to try to "hide" his tics (which is increasingly impossible!). But now, he is REALLY upset at us for doing that and said if we ever went into school to address the entire class he would "never ever speak to us again" or worse. Now we're stuck, b/c I think some of his classmates get on him and say, "Is that a Tourette?" whenever he makes verbal tic or motor tic. last night he cried and cried and said that "everyone hates me." We believe he is being somewhat overdramatic (his school teachers were ALL informed by us of his condition and we speak with them regularly re our son -- they've been great, too), but his pain is very, very real and we're just heartbroken about it... we're trying to help him be "empowered" to explain his tics to his classmates but he just tells us "I don't want to talk about it!" Like many of you, my wife and I do our best to love him alot (and unconditionally) and keep up our and his good spirits, but BOY is it HARD sometimes! Argggg! Thanks for any thoughts.... Bless you all, Wewillbeatthis

Hello, Noelle Please know that many people on this forum share your feelings and frustrations -- my wife and I have been comforted by listening to/reading others as they share their success stories -- I hope you're able to hang in there, as we are trying to do, too, as we help our 12 year old get over (or through) this period.... We recently ordered and read Sheila Rogers' new book: Tics and Tourette's:Breakthrough Discoveries in Natural Treatments. We are certainly not experts, but this seems to be as well-compiled a work as any on the topics of TS+, if not the best we've encountered thus far. Best wishes to you and your family, Wewilbeatthis

Hello, Marie We are new to this forum... My son (now 12, but diagnosed with mild TS in '99) recently had a turn for the worse starting a few weeks ago (showing much more complex tics and OCD behavior). My wife and I are still playing detective about the cause for the sudden change (poor diet, stress/excitement from the holidays, strep?), but we are pretty convinced that the air in our house wasn't helping (lots of holiday pot pourri/scented candles, lots of firewood burning, Christmas tree, my son's excessive (!) use of Axe body spray) . So, we got a few portable HEPA air purifiers, which seemed to help him alot -- at a minimum, he said it's easier for him to sleep now in his room. (Btw, I did some reserach on the air purifiers first and I'd suggest avoiding the "ionizers" out there, as consumer reports question their effectiveness compared to HEPA purifiers.) Just my 2 cents! Good luck with the renovations!

Hello, all I am a newbie parent of a 12 yr old with TS (and suddenly emerging OCD and ADD, which seemed to get much, much worse about a month ago) and am looking for some guidance re PANDAS. Last week (after reading this site and Sheila's new book), we decided to have our son tested for strep, even though he did not have the classic symptoms like a sore throat. Sure enough, he had strep in his systems and our pediatrician has put him on amoxicillen a few days. Are there other antobiotics we should be inquiring about? I have seen some posts refer to other types of antibiotics. Thx for any help!

Thanks, Jeff! This is a very very tough time for our whole family and your feedback helps a great deal. Adding to the stress of my son's situation is, of course, having mom/dad now suddenly telling him (and the other children) that some of their favorite things to eat are now off limits... I really hope this is only making things worse for the time being/temporarily, so I hope we have the patience and fortitude to stick with it... Thanks again, Wewillbeatthis

Giselle, I am a newbie and just read your post -- I hope things continue to be going well for you and your son! My son has had very mild TS since 1999 but now (at the age of 12) the last 3 mos things have gotten much worse (the tics have become more profound) and, in the last few weeks, the OCD has become a big problem, too. Among other things, we are getting a blood/urine test tomorrow that is called the TRIAD test that is supposed to do identify difficiencies in his system and allergies (and hopefully idenitify PANDAS related issues).. have you heard of this? The homeopathic MD we met with this week suggested that this test be done before we dive into supplements... Thx for any help/thoughts! Wewillbeatthis

Thank you, Chemar We are removing the deodorants, sprays etc and have purchased a few HEPA air purifiers. Another question, though: if these were the offending triggers, how long would you expect before the tics might improve once they are removed? Is there a few day lag in your experience? Happy New year to all

Hello, all I have spent the last few months reading much of the posting on this site (and on other TS-related sites). It is so very heartening to see such genuine and selfless efforts being made to share information and assist others. Thank you all (and bless you all) for your postings. Before I take my turn to ask for input from any folks out there, some background: My son is 12 and was diagnosed with very mild TS in 1999 -- my wife and I decided to take things very conservatively and slowly with the hope of him "growing out of it." Essentially, we did nothing and watched the tics classically wax and wane (only mild verbal and motor tics) -- we've always told him that the tics didn't bother us and he always said it didn't bother him -- so we agreed that we'd just live our lives and wait until (or if) HE ever said that the TS bothered him -- then we'd sit down and talk about options. Well unfortunately about 3 months ago, he (now in 6th grade) really started to exhibit signs of AD (in school and at home) and the complex tics began to get more pronounced. About 1 month ago, the tics got really bad for him (e.g., standing up and spinning around/constantly looking behind him), to the point where we said it was really bothering him and he was getting quitre depressed.... so, now my wife and I are on a mission, like many of you, to beat this thing (whatever this "thing" is)!! Before we explore the meds options more fully with a pediatric neuro, we want to exhaust alternative options. So, 2 main questions pertain to advice we got from a homeopathic MD, who suggested that we begin with a TRIAD Profile blood test and that, until we get the results back, to get him off of his "classic American diet" (e.g., sugary cereals for breakfast, school lunches, pizza for dinner and, red colored Gatorade after basketball) and onto a "Feingold Program Diet" that focuses on removing all artificial colors and flavors and preservatives and salicylates. Do any folks have experience with these? Ok -- one other question (!!) -- we have timed the recent spike in tics to when he started to use this new body spray that he and his buddies like to wear to dances, etc. called AX -- has anyone had expereince with sudden triggers from such things? Thanks and best to all....