Laurensmom

Patty, just wanted to add that the natural course of TS is that tics become apparent around the age of 5 and are nearly gone by the age of 18 for many/most kids. If your daughter is having tics, it may not be TS, she may just have "childhood tics" and they may pass? Also from the ages of 8-12 tics are heavier than at any other period according to studies conducted by Yale. Best wishes to you.

Thanks all - for the kind replies. How great to know we can openly - yet respectfully disagree on various issues. Patty, what a marvelous comment/contrast to the medical community. The bird seed comment did make me chuckle. Have a wonderful weekend all.

Carolyn said: I hope that I didn't say anything to upset you. Heck no Carolyn, it takes lots to upset me. I guess that's why I tend to be a bit "blunt" in my own correspondence. In person, I'm quite inoffensive. believe it or not. Thank you Cum Passus and Carolyn for taking a moment to reply.

Hello all, I must apologize to you for the way in which I "carry myself" on discussion boards. I have to learn from experience, and "experience" tells me that I am abrasive when I disagree with people. I try to be open and tolerant, but I apparently do not come across as such. I must admit that I am part Irish and that must play a role, no? *wink* Anyhow, provided I stick around I will attempt to share more respectfully, but I do hope that I can disagree at times? If I do so in a manner that is perhaps more thoughtful? I plan to read the ACN book, as I said because I am "open" but it's only fair that I admit to my skepticism if I participate here. Thanks and again, sorry if I offended.

Tess'mom, I apologize for my role in turning you off. I think there are many great suggestions here and there is much hopeful information on TS. We all need that. I think I opened up "debate" by saying what I believed and didn't believe and that wasn't necessary. I should have stated my position differently in hind site. Had I done so, the discussion would have likely remained supportive? Take care, and please do stick around. Laurensmom.

If you don't mind me asking, could you tell me what made you decide to decline vaccines for your daughter? Don't mind at all Kim. Interestingly enough, I was sitting in the doctors office while Pregnant and picked up a copy of Mothering magazine to browse while in the lobby. The issue noted that vaccination was controversial and mentioned some of the reasons why. I was puzzled about the controversy, but then I recalled a news special I'd seen years before about severe vaccine reactions, and thought to myself, "I plan to look into this carefully" before I decide to vaccinate. After two years of trying to decide, I came out against vaccination for my daughter. Not because I don't think it's a valid option under certain circumstances, but because of how vaccines are made and marketed. I individually researched each vaccine, death rates prior to vaccination from various diseases, and contrasted that to the estimated number of deaths from said vaccines. Unfortunately, I came to the conclusion that vaccines are killing more kids in the US, than they save. I realize that's a VERY controversial statement, but that's what the numbers indicated. I was an accountant before becoming a full time mom, so I crunched the numbers and that was IT for me. It's also interesting that the US has a very high infant mortality rate, in spite of record high vaccination rates. There is so much to know about the ins and outs of vaccination. It's a topic in and of itself. I actually became very active in our local vaccine awareness chapter for a time, and did a great deal of research which was used in court to "try" to dissuade the state from mandating the chicken pox vaccine. Unfortunately, the state went ahead with the mandate. However, What I learned about the drug/vaccine approval process is really frightening. I still remain on the fence over vaccination (generally speaking) but I feel that for my child - with our family history of various issues, it was best not to vaccinate. My husband is diabetic, my nephew was given a drug in surgery as a baby that was later linked to cancer (he survived stage four neuro-blastoma) etc. I am fairly cautious about what we put into our body for many reasons. Thanks for asking. PS I have always been interested in "natural medicine" and more so, complementary medicine, and I feel that our "for profit" medical industry has a long way to go. Sorry to ramble. I don't wish to take up the issue of vaccination, and do respect each parents personal decisions regarding vaccination.

There are things with natural antibiotic properties you can try? http://www.shirleys-wellness-cafe.com/herbs2.htm#antibio Regarding going out of state, I know there are PANDAS clinics and many experts are now preferring that kids are treated under the guidance of such a clinic. Best wishes to you.

Carolyn said: All children and adults with tics and tourette syndrome are different. You don't say whether or not you you've taken foods out of your daughter's diet or not to see if it makes a difference. Even if you have consisentely removed certain foods from her diet, everyone's different. For most here supplements isn't the only thing that's helped their child or them. Thing that have helped include tv, video games, metals, avoiding trigger/allergy foods, along with many other tic triggers. Anyways when your trying to find tic triggers, you have to be open to anything, not just supplements, excitement, and stimulation. Carolyn, I started out in this manner, but my approach has been to increase certain foods, not eliminate any. We focus on eating healthy in general. But, I can't really eliminate foods to reduce tics, if my child isn't having tics. Further, I started out down this road, but realized that it wasn't our solution. My child has always been prone to over-stimulation, so her tics have been one of several means to express that. I did have an allergy test, and was sufficiently convinced that was not our issue. Thing that have helped include tv, video games, metals, avoiding trigger/allergy foods, along with many other tic triggers. ... you have to be open to anything, not just supplements, excitement, and stimulation. Actually, I do get to decide what I'm open to based upon research I've read. However, I did say I remain open minded in general. I am somewhat open to allergies upon reflection, but, I'm not open to someone telling me the rain causes their child to tic. Where do we draw the line, KWIM? People are exposed to more than 500 chemicals and toxic substances every day. I have stopped pursuing a needle in a haystack. But, if my child had severe tics, I might reconsider. Interesting article here: http://www.medicalnewstoday.com/medicalnews.php?newsid=9681 Here is a study which indicates that emotional stimuli can increase tics in some children: Résumé / Abstract To assess objectively the effects of emotional stimuli on the severity of tics and to determine if such effects were mediated by the autonomic nervous system, we carried out videotape ratings of tics and electrophysiological monitoring of heart beat and respiration on 4 children with Tourette's syndrome while they were watching a movie known to elicit emotional responses relevant to normal childhood events. Measured tic severity was highest during periods associated with anticipation, resolution of emotional changes, and lower concentration, lowest during periods of anger and happiness, and intermediate during periods of sadness and fear. Tic severity did not correlate with heart or respiratory rate. Thus, tics seem influenced differentially by various emotional states, but this effect does not seem to be autonomically mediated. I think if there is a connection to TV/video games, this is the connection. That doesn't mean some can't disagree with me. But, the bottom line is, if my child had tics from the tele, I'd leave it up to her if she wanted to trade Sponge Bob for a tic or two. Peace PS > as I said, I'm open to research. But, I am not open to dogmatism. Parents know their child best, I respect that but I also reserve the right to "think" for myself. If you want to start a new discussion on the matter, that might be best. I wish not to debate in a thread where a mom came to seek info/help.

"The thing about tics is finding the trigger." I've had great success as well. However, If my child has any "triggers" I feel that they are due to excitement and stimulation. Though I haven't formally pursued the notion of "triggers" personally. We do try to follow common sense when it comes to nutrition - which may be beneficial? I think that magnesium has been helpful in our case, but again given the (waxing and waning of tics) I can't say for sure? I take my childs word for it, however as she says it is.

Thanks for the uplifting story. Best wishes to you and your son.

As to the first order of business. Chardonnay! Alice White has a very inexpensive Chardonnay and it's rated as a best value by Wine Spectator. They also make a killer Shiraz. The Merlot is highly regarded as well, though I prefer the Shiraz and the Cabernet, personally. Regarding the kiddo you are here discussing. Your child sounds much like mine. My 8 year old dd has TS/OCD and qualifies for an ADHD dx, but I haven't pursued one. She has also had difficulty with anger management, frustration management and other "issues." But, we are seeing improvement. As to the question on medications. I'd answer no, you don't need her on Risperidone. But, I'm partial to magnesium and Inositol so that's a biased opinion. I will never say never when it comes to meds, but I try to avoid them and use vitamins for now. As for behavior management. I have felt like you many days. I have felt like a complete failure on some days. But, if I look at my child and compare her to where she was two years ago, she's made TREMENDOUS progress. I'm going to recommend a few things that have helped us with behavior. 1. TOKENS! We use poker chips and keep them in an old coffee can, but they work for "rewards" and "consequences." I would spell out the issues we're working on and let her know how she can earn a token, or lose one. She then saves the tokens for a trip to Target or??? for a small toy. I figure if you earn a paycheck as an adult, you can earn a token as a child. 2. I have used time outs, don't think they work in our case. But, what has worked is explaining expectations and consequences ahead of time for things that you feel need work. Again, it's not a magical solution, but it's helpful. 3. Library books on various subjects like "self control" etc. I home-school, and have a different topic each month. But, even if you don't home-school, you can find great books to help kids work on their "issues." I have two parenting books to recommend right off the bat as well. 1. Ross Green "The Explosive Child" 2. Mary Sheedy Kurcinka "Raising Your Spirited Child" The main issue with the meds is if the school meddles I suppose? Perhaps she's more easilly managed at school with the medication? But, the decision is yours regardless. Best wishes, and let me know what you think of that wine! Just my .02 - you'll get a wealth of information and opinions to mull over here. PS - I don't share the belief that TV, the flicker of lights, allergies, dairy, wheat etc.. are a large part of the "problem" when it comes to TS, but I do feel that good nutrition and vitamins can be helpful.

Perhaps you're craving nutrients that you're not getting with a limited diet? Are you finding limiting these foods helpful in any way?

http://www.tsa-usa.org/news/NewlyDiagWebstream.htm Though I have some critique, overall this is a great presentation. Be warned, some parents felt that Walkup was "blaming the parents" for behavioral issues they are not to blame for. However, he does give fabulous food for thought, regardless. He also goes over medications and side effects, which I found interesting. The presentation is very long - about 3 hours. But, it's really worth a watch. Again, I don't agree with all he says, but feel it's loaded with valuable info regardless.

Stuart, was your child dx'd with Tourette Syndrome? It's possible her tics will pass and if that's not the case. If she has "childhood tics" she'll not need a deep explanation. I would simply tell her she has "tics" and tell those she comes in contact with the same. You needn't say that she has Tourette Syndrome if your not sure just yet. Also, you needn't say she has TS until you're comfortable explaining it to her. I would try to be very matter of fact, and not overly dramatic when you do mention it, if that time should come. The first thing to do is care for yourself. Take time to adjust. Then, after a while, you can explain fully to her. I said something like: "Oh, you know those tics you're having, there is a name for them - Tourette Syndrome. It's a condition that effects lots of kids and some adults. Most people outgrow TS by the time they're adults...." ETC. I'd then ask if she has questions. But, I think presentation is very important. Thankfully we had a friend who had TS as a child, and my daughter adores him. So, we can keep things light by reminding her of this friend when she has felt like a bit of an outsider. Further, we tried not to appear "glum" when we told our dd. It was as nonchalant/unemotional as could be. Hope that helps?

Stuart, let me say that many kids have tics, and most outgrow them quickly. However if the tics persist for at least a year in total, then your child may have TS. I put this together shortly after my daughters dx. It helps me to have perspective, personally:

Keep in mind that flu vaccinations contain an weakened/inactivated flu virus. If the flu can increase bouts of tics (mercury aside) than the vaccine can do so as well (supposedly to a lesser extent.) The Flu-mist vaccine does not contain mercury, if that is your main concern. http://www.sunherald.com/mld/sunherald/liv...ss/15682357.htm Also, my daughter who has TS, has never had a vaccination. At least not to my knowledge. They were administering HepB at the time she was born, but I refused the shot. Not sure if the hospital complied or not, frankly as they did not comply with other requests I made.

Fascinating info Kim! I had NEVER heard that a wasp sting can be a factor in various illness? SHEESH! And fava beans?! Indeed swelling of the brain can lead to many issues, and many things can cause encephalitis. Also interesting to note that seemingly benign environmental factors can wreak havoc in some populations. On a similar note, my dad suffered from Malaria in the Vietnam war, he has never been quite the same. After a bit of research I found that it has been demonstrated that those recovering from malaria have had higher incidence of violent behavior, depression, post traumatic stress etc. I am certain that if I had more than one child with TS, I'd be less likely to ponder our birth experience. In fact, that experience is just one of many things I "ponder" from time to time. But, I don't "obsess" about it because it's pointless. However, I heard back from one of the original researchers on the article that prompted this discussion, and here is what she had to say: Dear XXXX, Thank you for your note and your question. Our research and this review are aiming at understanding which specific developmental processes help children with TS to control their tics. This research started with Petersons paper from 2001 showing that children with TS had a more prominent prefrontal cortex than control children. We know that executive functions that control our impulses and automatic behaviors are mainly located in this area of the brain. Further the volume of the prefrontal cortex correlated inversely with tic severity (meaning that children with TS with a more prominent prefrontal cortex experienced less tics). This may suggest that children with well developed self-regulatory control or executive functions also have a better capacity of controlling their tic behavior. There are, however, to date no follow-up studies that test e.g. measures of training, which could help parents of children with TS to understand which specific interventions may help their children to improve self-regulatory control. It is also important to realize that these processes generally take place unconsciously and probably it will only be possible to “train” such control to a certain degree, most of it is regulated by the brain’s own maturation. Another point that has to be taken into account is that some children with TS experience tic suppression as uncomfortable and in this group one would rather recommend letting them tic freely. In the future it will, however, be important to conduct studies that map which factors may help children to a positive outcome of their tics (most of them show a substantial improvement during their teenage years) in comparison to other factors that may prevent this adaptation to the condition. So we can hope that your highly relevant question may be answered more specifically in a few years time! Best wishes, K Plessen Thanks again for the interesting discussion Kim. I'm thankful I got an answer/clarification. PS I wanted to touch on the Metabolic Disorder issue you noted. My dd seems to get relief from Inositol and Magnesium supplementation. I try to give these vitamins on an "as needed" basis, but have found that they are both helpful along with good old fashioned common sense nutrition. I also have discovered epsom salt baths from reading here. She loves em! Also, my husband is a diabetic, and I recently read an article that indicates researchers are looking in the direction of "the nervous system" to explain diabetes? I can't find the blasted article now, but will post it when I can. Have a great day LM

If it's any consolation I just got this email reply (regarding the first piece of research I posted) from one of the worlds most respected TS experts: Very interesting, but there's no simple way to translate this gobbledegook, even for me! Heh! I guess I don't feel so bad not being able to make much sense of it myself.

I believe what they are saying is that genetics combined with experience effects outcome. For example > Twin studies are important because they give valuable insight into how genetics and environment affect diseases. Although it is clear that genetics play a powerful role in TS, environmental factors influence how affected one is by TS. Identical twins, whose genes are identical, may have tics that differ in the intensity, frequency and character. This means that non-genetic factors underlie these differences. The vast majority of TS is genetic in nature, everyone with any credibility knows that, thankfully. However what is unknown are the environmental factors that cause a different expression from child to child, with the same genetic make up. Some of the factors are birth weight, oxygen, nutrients etc. Some other interesting information resulting from twin studies show that the twin who weighs less at birth tends to have more severe tics later in life. This may be caused by a series of events that happen before the babies are born, such as differences in oxygen and nutrient levels in the babies' developing brains. Parts of the brain called the basal ganglia have been shown to play a role in TS and in other disorders involving involuntary movements (such as Huntington's disease and Parkinson's disease). Here's more: Brain imaging techniques have shown subtle abnormalities in the basal ganglia area of the brain in some people with TS. MRI has shown that in twins with TS, the more severely affected twin had about a 7% decrease in the size of the brain's right caudate nucleus. One study using PET (positron emission tomography) showed changes in activity in the basal ganglia and prefrontal cortex, but the authors noted that the data were not consistent, meaning it is too preliminary to draw any solid conclusions from this work at this time. Additionally, the roles of neurotransmitters such as serotonin and dopamine in TS are not yet fully understood. For example, I think our birth experience may have played a role in my dd's TS expression?. She was in danger and had to be put on oxygen during the birth because she was deprived in the birth canal. I can still see the panic on the faces of the medical staff. Though, I'll never know for sure if that was a factor in our case, the good news is that the brain is plastic and we have the potential "correct" some of the issues at various times (in some cases)? I just want to know HOW as you said. The question I have is could this research lead to an O.T. regimen specifically for TS? OCD has had marvelous benefits from CBT for example, and that is also a genetic issue. So, I find the research encouraging. However, I agree it can be a slippery slope if some people use this to BLAME THE PARENTS once again because as we all know that's hogwash. Though, if parents can do something in some cases, we all want to know what the heck that is. The idea is very empowering. I do want more information on what activity to encourge in our kids though. IF I read the information correctly, that is LOL. Thanks again Kim for the feedback, it's been great to have someone to bounce stuff off of. SOURCE FOR INFO ABOVE: http://faculty.washington.edu/chudler/ts.html

Well, look at these statements; This sounds like they think that some people never engaged in activities, that resulted in the proper formation of the part of the brain that is involved in "self-regulatory control," or possibly not during the correct time frame? I don't take that statement in the same way? The "expression" of TS is influenced by genetic and non-genetic factors > such as illness, birth weight, perinatal factors, birth issues etc??? If they were able to see changes in the brain, between people who did certain activities, and people who didn't do these activities, I wish they would have filled us in, on what the differences in activites were! Indeed! I took it that way at first, but now I think I misinterpreted "activity-dependent?" I think that's a technical term for brain activity? I'm still digging into that. Ok, that makes sense. But again, how might this be applied to TS? It applies to a number of adolescent conditions from what I've read? and So they kept a mouse in the dark, during a critical period of development, and they saw that it "perturbed the regulation of these age-specific gene sets." If you were to keep a child/baby blind folded, or in a dark room for an equivalent period of time =to 4 days in mouse life, I don't think anyone would be surprised, if it perturbed their gene regulation. I guess what bugs me about this, is it really reminds me of the old theory of "Refrigerator Mom's," in regards to Autism. Faulty gene or faulty parenting. Yea, that must be what happened sad.gif I have no idea what they are attempting to say with that research. I sent out a few emails, I'll let you know if I hear back. I'm going to re-read it and see what I can come up with. Laurensmom, I'm right there with you, on leaving no stone untured, but I get frustrated on "studies" that, in my minds eye, miss the mark so badly, in light of what the majority of us seem to see, in our children. I agree. I believe parents, always have always will. And, generally TIME has proven us parents right. The science is catching up, thankfully!

http://www.ncbi.nlm.nih.gov/entrez/query.f...t_uids=10395573 Adding this interesting tidbit. Calcium- and activity-dependent synaptic plasticity. * Zucker RS. Department of Molecular and Cell Biology, University of California (Berkeley), 111 Life Sciences Addition, Berkeley, California 94720-3200, USA. zucker@socrates.berkeley.edu Calcium ions play crucial signaling roles in many forms of activity-dependent synaptic plasticity. Recent presynaptic [Ca2+]i measurements and manipulation of presynaptic exogenous buffers reveal roles for residual [Ca2+]i following conditioning stimulation in all phases of short-term synaptic enhancement. Pharmacological manipulations implicate mitochondria in post-tetanic potentiation. New evidence supports an influence of Ca2+ in replacing depleted vesicles after synaptic depression. In addition, high-resolution measurements of [Ca2+]i in dendritic spines show how Ca2+ can encode the precise relative timing of presynaptic input and postsynaptic activity and generate long-term synaptic modifications of opposite polarity. PMID: 10395573 [PubMed - indexed for MEDLINE] I'm using this thread as an info dump. Sorry to confuse.

I have no idea if I'm interpreting this correctly at all, but - I don't think the attempt is to say that movement disorders are related to over or under stimulation? At least that's not how I read this info? What I think they are saying is that the OUTCOME of TS and other conditions may be positively effected if the brain gets a certain type of exercise. I think that what I posted initially indicated that the reason most people outgrow tics after adolescence, is because of the way the brain develops in that period? As parents I suspect we can try to facilitate proper circumstances to aid in the process? "Neuroimaging studies suggest that the expression of the genetic diathesis to TS is influenced by genetic and non-genetic factors affecting "activity-dependent" reorganization of neuroregulatory systems, thereby influencing the phenotype, illness severity, and adult outcome of tic disorders." Effects of visual experience on activity-dependent gene regulation in cortex There are critical periods in development when sensory experience directs the maturation of synapses and circuits within neocortex. We report that the critical period in mouse visual cortex has a specific molecular logic of gene regulation. Four days of visual deprivation regulated one set of genes during the critical period, and different sets before or after. Dark rearing perturbed the regulation of these age-specific gene sets. In addition, a 'common gene set', comprised of target genes belonging to a mitogen-activated protein (MAP) kinase signaling pathway, was regulated by vision at all ages but was impervious to prior history of sensory experience. Together, our results demonstrate that vision has dual effects on gene regulation in visual cortex and that sensory experience is needed for the sequential acquisition of age-specific, but not common, gene sets. Thus, a dynamic interplay between experience and gene expression drives activity-dependent circuit maturation. http://www.nature.com/neuro/journal/v9/n5/abs/nn1674.html I plan to keep digging into this. Curiosity is killing this cat! http://www.pitt.edu/AFShome/p/w/pwm/public...city/read3.html I may contact these folks too: https://register.nips.salk.edu/ Thanks for the info and feedback Kim. We are reading this information differently, apparently? Wow, that's amazing ! Thanks for sharing.

Another very interesting article: Be sure to see the glossary near the end. http://www.youngminds.org.uk/sos/brain.php ‘The frontal cortex [where this development takes place] is essential for such functions as response inhibition, emotional regulation, analysing problems and planning. Many of these aptitudes continue to develop between adolescence and young adulthood’ 3 , whereas spatial awareness functioning and sensory functions (such as hearing and language processing) are largely mature by adolescence. This pruning occurs on the ‘use it or lose it’ principle: this means that the activities undertaken by adolescents are critical to ensuring that circuits (or processing systems) which underpin adaptive, rather than maladaptive, functioning strengthen and grow. The frequency and intensity of experience determines the likelihood of particular synapses surviving this period of pruning. ... http://www.youngminds.org.uk/sos/brain.php Seems to me there must be something parent/professionals can do to strengthen/facilitate the necessary brain development?

MORE from Kim's link above: For other abilities (e.g., to learn a new language or a musical instrument) the window of opportunity would be more accu- rately described as a sensitive period in that it appears to remain open longer,perhaps a whole lifetime.This type of brain plas- ticity has been called “experience-dependent”—responsive to experiences that aren’t necessarily present in everyday life. From a policy perspective,many of the most important brain- based capacities of children are experience-dependent.Literacy is a complex set of skills that can be encouraged by being read to daily or being enrolled in early childhood education (which may not be available to everyone).The goal of policy and prac- tice should therefore be to ensure not only that all children develop functional sensory and motor skills, but that they are exposed to the experiences and social interactions thought to encourage the experience-dependent neural foundation on which literacy and other abilities can be built. Interesting. I practiced "attachment" parenting and read to my child daily. She was very verbal from a young age, and is musically inclined. Not sure if there is a connection to any long term "outcome" but I find this subject very intriguing.

FASCINATING KIM! I plan to check out both links today.