Lynn777

Yes, I am post happy today. Do any of you get a real tree? Any issues with the smell of the tree bothering tics? DS doesn't seem to have sensitivities to chemicals, smells, etc. But honestly it hasn't been long enough for me to know for sure, so I worry about every new possibility. This is just so hard, I keep wondering if it will EVER get easier. Thanks again, hope everyone had a Happy Thanksgiving!

Last week DS told me his allergies (a.k.a tics) are worse at home then school. Then he was away for four days over the holiday, still ticcing a lot since the mouth injury, but his cough/ throat clear seemed better. He said today his allergies felt better while he was away. I am now sadly thinking about the dog. She is a golden and has a ton of hair all over all the time? The thing is we have had her since his birth & before the tics he never showed any allergy towards her. Is it possible for the reaction to have started at the time as the tics? Since onset, I don't burn candles or use air fresheners anymore. I use all natural cleaning products in his room & bathrooms. We live in a new (2 years old) house, so I don't think it's mold or anything like that. Any thoughts...

Chemar, Thanks so much for the quick reply. We have taken him to the movies once before with no issues, but it wasn't 3D. So, when my husband mentioned 3D, I started to panic, I thought -- this is not something I remember reading ANYTHING about. Since he is already in a waxing period, I didn't want to perpetuate anything. So, hubby drove to a theater 20 minutes further that was showing the movie in digital, but not 3D. I figured better safe then sorry. I'll probably have the bath ready for him anyway when he gets back, just in case regular movies while waxing don't mix! Thanks again, hope you are having a nice weekend. ~Lynn

If anyone happens to be logged on, I need a quick answer on this one. Any history on 3D movies being bad for tics? Husband was going to take him & I started to worry... Thanks, Lynn

I will absolutely pray for you & your daughter because I could have written every single word of your post myself, other then the fact that my husband calls them "tics". I think this board is part of healing, I truly do. I've been having a really hard week and just spent two hours in the therapists office and she told me my breakthrough will come when I stop holding onto my anger and holding out for a cure or complete recovery that might never come. She told me I need to be there for DS, help him cope and give him the love & guidance he needs to have a good life. Also, I am slowly trying to remind myself that just because God hasn't cured my DS of his tics, doesn't mean he can't still "heal" him (& me for that matter). I think healing comes in different forms. Anyway, I get home from the therapist and read these words from Chemar to you... I stopped insisting on a "cure" as being the only answer to my prayer...and instead prayed for guidance and strength to help him have the best life possible, even if he was not "cured". Coincidence? I doubt it... God Bless & take care of yourself! You are not alone. ~Lynn

Hi CWS, I know you didn't ask me, but I just want to say that my son started with excessive eye blinking that the pediatrician said was nothing. It went away and returned 6 months later. We had his eyes checked, everything was normal and then two months later the tic onset occurred. We went to the neuro and she said, it almost always starts with eye blinking. Well, why is it that no other doctor even mentioned that to us. I am not telling you this to scare you, Chemar is right - there are many other things that can cause tics. I am telling you because I wish at the first eye blinking episode I would have known enough to at least clean up my son's diet, start him on a good quality multi vitamin, give him the recommended magnesium for his weight and even start occasional Epsom salts baths. Hindsight is 20/20, which is why I felt the need to share. None of those things are "harmful" to a child. Oh & it's true you should have his eyes checked first! Just my unsolicited 2 cents Best wishes, Lynn

See, I learned something! Cheri, I never knew your son was diagnosed with some of those issues before the dramatic onset. So, when your DS was younger did you do any alternative treatments or did you only start once he was 10? Honestly, how did you cope with all of that? Really, what brought you threw all of this? PLEASE share your wisdom... Sometimes I wonder if I'm just weak, my son has not shown signs of those other issues (yet) and even still there are days I just want to leave and check myself into a clinic somewhere. At the very least heartbreak hotel, if in fact it was a real place! LOL! I would never punch you, there are way too many people that need you around, but that therapist or one of my family members are in danger of a good pop one of these days Vigilant, I'm sooooooooooo trying!

Yes, just recently. First, my son was doing extremely well for over two months; I honestly had the nerve to believe we were really onto something with the supplements & diet. Then he had a mouth injury and of course his most hateful (IMO) tics came back - the grimacing & low grunt. He doesn't usually notice his tics, but today he told me he's trying to stop doing it, he said it doesn't really bother him, but I still wanted to drive a stake through my heart! So, his mouth starts to heal & of course he get's a cold and exact same thing as you, the cold is pretty much over but the pattern of coughing and sniffing have stayed. As for the elbows, I never experienced it, but did read about a girl in one of the TSA newsletters that said that was one of her tics. We are plugging on with the vitamins and supplements, but honestly now I think it's more my husband then me. I still do the work, but he wants to keep pressing on. Personally I'm about ready to check myself in to the nearest psych ward (and please understand, I truly don't mean that with any levity or disrespect). Best Wishes, Lynn

Thanks Megan, Right now my son mainly just has tics, his therapist keeps telling me to stop worrying about something that might never happen (i.e. comorbidies). Some days I swear if one more person tells me to stop worrying I'm going to punch them . Anyway, there was nothing unusual about my son as a baby or toddler (until the tics that is). Other then he had a slight speech delay. I'm just always so curious about other peoples "stories". How things progressed or didn't progress. The night terrors with your DS must have been very scary, then hallucinating on top of it. I'm sure as a mom I cab somewhat imagine how you felt, but how did he handle all of that? How old is he now? ~Lynn

Hi Everyone! I'm sure this has probably been discussed here before, but for those of you that have children with Tics/TS + comorbidies, when did the comorbidies start? At the same time as the tics, whithin weeks, months, years of the tic onset? Also, did you notice anything that wasn't "typical" about your child (baby/toddler/youngster) before the onset? Maybe not even at the time, but in retrospect? As usual, I'm trying disect things, which is what us TS mom's seem to spend an awful lot of time doing and I'm just curious of other's experiences. Thanks, Lynn

Again, interesting. Have to learn more about this. Still think it' s interesting that my son doesn't (noticeably) tic with his mouth guard in!

Mary, my son (actually both of my sons & me) has an overbite, is this the same idea - bringing the lower jaw forward so it lines up? I'm still trying to figure out how all this TMJ/dental stuff can possibly be connected to tics, but I do know for sure the dental stuff is a trigger for my little guy!

Yes, I think you would be on the right track with the IgE and IgG to start. Good luck!

Hello! We did the IgG blood test. My son came back with alot of food intolerance, but mostly dairy/gluten. I had a "gut" feeling the dairy was going to be off the charts. Our neurologist said if you want to know for sure if food is truly a culprit that the elimination diet is the best way to go. However, we have just completely eliminated everything that came back moderate & high on his IgG profile. We still give him the stuff that came back "low" but even avoid some of that too. Personally, I think the supplements are as important as the diet & no matter how much elimination you do, tics will sometimes still find their way back through other types of triggers. We just learned this with a mouth injury & trip to the dentist. It's all a learning process. Best wishes! ~Lynn

Okay, as you all know, my son had a mouth injury lately. Since then, his dentist recommended he always wear a mouth guard playing sports and he's a sports fanatic. Now, when we first started this practice there was boo-ku anxiety (change/didn't like the feel). However, he got used to it pretty quick & I've been noticing when he wears it he doesn't tic. I'm going to keep a diary of this and let you all know the outcome. His dentist told me he never heard of a correlation between tics and TMJ issues, but I'm sure you all feel the same way as me about that... Also, as Dalit mentioned in her original post, the dental injury resulted in increased tics, which STILL have not subsided. Why can't tics & TS be easier?!?!?!?!?1

That is just unbelievable. What's interesting, is my son was getting little prickly heat type marks on his arm from the silly bands, but I told him it was probably because he had them on up to his elbow. I can't say I noticed a tic increase, but who knows. I have now hidden them & hope he doesn't ask for them. Halloween was such a success. We went to our 10 closest neighbors and asked them to give him things like matchbox cars, markers, sidewalk chalk (that we provided of course). Then I switched out some of the whole foods candy with the regular brands and the rest we told him he could exchange for a gift. He was overjoyed. I felt so bad this was the first year he was the most excited about trick or treating & the first year I'd have to crush his spirit... Guess what? He had a blast & loved the whole night. He only knows he has "sensitivity" to certain foods right now. But, he was far from crushed when he was able to get "some" candy & a new present! Thanks for the heads up on the silly bands. These Tics sure are sensitive little buggers aren't they!?!?!?!?!?!

Ok, I have much to say about this post. My son's tics have definetly increased since the mouth injury & Halloween, but are you serious about the silly bands? really? really? He is up to 83! I'm sick of them & now you're making me think he's sick from them. Do you honestly think silly bands can increase tics?

Just wondering if anyone is familiar with this woman, her story or her literature? If so, anything different in her approach, etc then S. Rogers or anything else "we" already know?

Thank's again to all of you for the thoughts & prayers. It's amazing how quickly he healed. We still need to go back to the dentist in a week or two for one more follow-up (which I'm dreading). However, I truly believe all the thoughts & prayers got him through this His therapist looked at him and said "I'm shocked how good his mouth looks already, he healed so fast - must be all those vitamins you give him". Dalit: I absolutely wonder about the dental connection. My son's first filling is what set off his initial "major" exacerbation. Also, before this injury his tics were at their lowest & his vocals had been non-existent for 2 months. They are now back, slowing down again, but still back. What is it with the teeth/jaw/mouth? So, strange, but honestly this whole disorder is one big mystery... CSP: Thanks for checking in on the 22nd, somehow I missed that one.

Thanks Cheri, I will definitely order from them in the future. We are friendly with many of our neighbors, so we had it preplanned for them to give him things like matchbox cars, sidewalk chalk, and other fun (non-candy) things he liked and then we were able to find some alternatives at the health food store as far as candy. My son handled it so well & had an awesome time regardless of knowing he had to "donate" some of the "nasty candy" that slipped through the cracks. He still made out quite well.

Okay, so the first time something happens you think, maybe he's just waxing; The second time something happens you think, maybe it's just a coincidence; But by the third or fourth time you start to think, this is crazy, but true... I am telling you that candy makes my son act hyper (which he normally is NOT) and always brings out his verbal tics (which are practically non-existent. His main tics are motor). We were just out to eat and one of the waitresses gave him a Kit-Kat (his favorite candy). Once again, instead of saying "no thank you" I bit my tongue and let him have it. Seriously, it's been about an hour and he's lowly grunting/humming all over the place. (I'm sure it doesn't help that he's been clean of gluten, dairy, peanuts, etc also for almost 2 months) My husband and I had a deal to let him keep some of his Halloween candy and "donate" the rest, but I just said, unless it's organic, clean & HFCS free he's not getting it. I'm sorry, but I can't deal with weeks of this.... I was such a doubter, but this crap really impacts these kids! "Tic or Treat" here we come (ugh). ~Lynn

I agree with Cheri (Chemar). I started that stuff with my husband. I went through all the reasons it was my fault. I was on bed rest for five weeks during my pregnancy and was really stressed out = I gave him Tourettes. I rub my legs together before I go to sleep = I gave him Tourettes. I "yell" alot, not at my son or mean nasty yelling, it's just my personality. If I get irritable or I'm cranky about something I let it out. I don't hold things in = I gave him " internal stress" which gave him Tourettes. I didn't breast feed = I gave him Tourettes. I was on different antibiotics during my pregnancy for chronic sinus infections = I gave him Tourettes. I could go on, but you get the drift. My husband looked at me & said "you're not really serious are you?" and then he said "even if you did - stop obsessing over the past & the "what if's" and let's just be the best parents we can be to him now." So, that's my advice. Relax. ((Hugs)) I know it's easier said then done, believe me!

BTW, I noticed you mentioned "hereditary". Do you have a family history of tics, Tourettes or OCD?

I felt EXACTLY the same way you do. HELPLESS. Where do I start? What do I start with? which kind of doctor should I see? First I want to say that every child is different and you will have to be the main detective and advocate for your son. Here is my personal advice. First, the majority of conventional doctor's aren't going to run the tests we talk about on this board. So, look for a good environmental, integrative or DAN doctor in your area. In the meantime, go organic and cut out all artificial colors, flavors, preservatives, high fructose corn syrup & MSG. Second the neurologist is usually only good for one thing - traditional meds, so don't expect too much additional help from him or her. I don't know if your child is bothered by the tics or has any anxiety issues, but if so I highly recommend getting him hooked up with a Cognitive Behavior Therapist (CBT). Not for the Tics themselves, but for any underlying issues. Here is a quote related to Epsom Salts: What are Epsom salts? Epsom salts are magnesium sulphate. Salts are just molecules that come together based on having a positive and negative charge. Magnesium has a positive charge. Sulphate has a negative charge, and they dissociate (or go their separate ways) in solution. Sulphate is a sulphur atom surrounded by four oxygen atoms and it has a negative charge. It has all sorts of unique biological functions. Epsom salts can be very beneficial for individuals with neurological conditions and can help remove toxins from the body. In addition it provides a calming effect to the muscles. As for the Bontech. I started my son only on the ts-PLUS CONTROL WITH VITAMIN D. My regular pediatrician didn't believe they would help, but said they wouldn't hurt him. My integrative doctor said he thought the formula of vitamins, etc was fantastic! I started him very slowly and worked my way up because I too didn't want to overload him with vitamins. I then added in Nordic Berries chew-able Omega-3's, again very slowly because some kids tic more on fish oil, but it is a critical supplement for kids with neuro issues. If you see any increased ticcing switch to flaxseed or I think "Chemar" (another poster & the brains of the outfit here) can give you some other options too. I have to run & pick up my little guy from Kindergarten, but if you have any more questions fire away...

Welcome! Sorry to hear what you are going through. I agree with everything Megan said. If the conventional medication is not working, which from experience (not personal, but from reading many people's stories) many times they don't for this condition. I would definitely suggest starting your son on a high quality multi vitamin, magnesium, omega-3's (or flaxseed, if he doesn't react well to fish oil), clean up his diet & also Epsom salts baths (I swear by them) - 2 cups dissolved in a warm bath, soak for 20 minutes. Also, we use the Bontech Supplements & personally I believe they are what took the head off the tics for us. My son improved dramatically after being on the full dose 2-4 weeks. His doctor approved them. Here is the website: http://www.bonniegr.com Lastly, we just started a strict diet in September based on the results of his IgG blood test. He is now off of gluten, dairy, peanuts, citrus fruit and a few other things. It's overwhelming in the beginning, but you do get used to it. My son is 5 and had his first major exacerbation in April. By last week, he was finally at a point where only we (his parents) were noticing his motor tics and his vocals had been gone for two months. Unfortunately, he had a traumatic injury on Monday night and that has stirred things back up again . That said, I still have faith in the natural process. Unfortunately with tics and Tourette’s we have to rely more on our own determination then many of the traditional doctor's out there. Best wishes to you & your son. You are NOT alone. ~Lynn