Chemar

my goodness I have just read this and must say I cannot possibly see why you would feel you are hated here, myrose I have only ever seen much support for you all over these boards and I sure know I have offered it many times in posts and in many PMs to you too I personally go out of my way to stress over and over how what works for one may not work for another becasue there are so many different causes for tics, and to urge everyone to be careful to do research first on both supps and meds ( and all treatments for that matter). No one here has ever said one should simply not use medications, period.... my goodness the board has numerous PANDAS posts where antibiotics are very much the first line of treatment! Yes, this is a site for primarily exploring alternative therapies, but no one, including myself or Sheila Rogers, has ever said that we are anti medications. Suggesting caution and that members research side effects is not being dogmatically "anti". It is being careful as many doctors dont warn patients/parents of side effects. When your child was found to be having seizure activity it was absolutely the correct thing for her doctor to put her on medication. I didnt see one single post here disputing that. Also, I dont think anyone here has ever said that ALL kids who tic should not play video games or watch TV or eat a varied diet. some children are photosensitive and some posts related to that, not to every child here. My son has continued with his games and computers and TVs uninterrupted (we did find it very helpful to keep a daylight lamp on instead of darkened room with the flashing that comes from the screen, and ensured he was using LCD rather than CRT screens...and so I am most appreciative of all the research and sharing Claire posted on that) Similarly with diet...those with food allergies and sensitivities need to avoid certain foods not just related to tics but for their overall wellbeing. If you are allergic to penicillin you dont take it. Same with foods. Allergic reactions to foods can be very dangerous! but no one has ever said one should force every child who tics to stop having wheat or dairy or go on Feingold etc etc. as far as junk food goes, personally I dont feel one is depriving a child by not letting them eat chemical food additives that are more and more being shown to be dangerous to everyone's general health. but again that is a personal decision that each parent has to make. perhaps you were feeling sensitive when you made that post, but I sure do hope you will feel better and remember just how much care and support you have been shown here by all of us throughout all you went through with your child. I really am very puzzled by the post.

hi Patty I have no info on whether steroids can or do spike tics OTHER THAN TS tics, and so that is why I was real careful to stress in both my above posts that I was referring to TOURETTE TICS we were told of the negative effect of steroids on TS by a physician many years ago when my son was going thru puberty peak and tics in mega wax mode He also explained it is thought this is why more boys than girls seem to exhibit TS then when my son was dx with Crohn's and they wanted to treat with steroids I asked the GIT specialist to please check as I was concerned re the negative connection i had been told of before. He did and he confirmed it would be far too risky to use steroids to help the crohn's auto-immune inflammation when the downside could be a spike in TS tics an easily understood explanation is found in this article on the chemistry of TS. scroll down till you get to androgens and cortisol http://au.geocities.com/jones_kacm/chem.htm

My husband, who does have genetic TS, began severe ticcing by day 2 of a 5 day steroid burst treatment. By day 3 he was so severely impaired with intense tics that were affecting his entire body that he needed emergency treatment and had to be rapidly withdrawn instead of complete the taper normally required with a steroid burst. he has suffered serious and seeming permanent impairment as it is now months since the burst and his tics are far worse than they were even at their worst in childhood (having had many years of just a slight facial grimace and throat clearing) what troubles him most is the cognitive impairment that resulted.

Bonnie PLEASE be very cautious about any steroid burst! forgive me for not always remembering whose kids have what dx but IF your son has Tourette Syndrome then steroids will make the tics far far worse! I know the steroid burst can help kids with auto-immune illness greatly BUT one has to balance treatment with diagnosis. when my son was first dx Crohn's they wanted to start steroid treatment immediately until I was able to convince the specialist to please go research steroids and TS. Once he had done that he realized why I was emphatic that it would not be a good treatment option for my son after my hubby's car accident some months back, the ortho insisted on a steroid burst as he was in extreme pain from all the inflammation. I tried to explain re the TS that he also has and had rather rude and authoritarian response from the doc and hubby was so desperate for pain relief he decided to try it. I can only tell you it had horrible effects and he is now ticcing more than he has in YEARS and it has also messed up other stuff for him. it has also interfered with his cognitive functioning pretty seriously. again, I know that steroid burst can be beneficial for kids with PANDAS but if there is TS associated please think carefully and do research before going near this! I do want to stress again that it needs to be remembered that this board is represented by people dealing with very many and varied diagnoses and what works for some may actually be dangerous for others. We need to be VERY careful before suggesting treatments to others!

Hi CP bear in mind he is almost 19yo so takes adult dose based on age/weight he currently takes 12 grams inositol daily divided into 4 x 3gm servings 2000 MICROgrams (mcg) B12 as 1000mcg 2x day, 50 mg P-5-P per day divided into 2 x 25mg servings he also has around 500mg methionine each day when OCD flares he ups his inositol to 16 grams per day I forgot to say the B12 HAS to be methylcobalamin! the cyano form does NOT work the same for him and apparantly is poorly absorbed

Methionine or GABA may help samE is expensive. my son prefers plain methionine he used to take 5HTP but now it makes him edgy, as does the l-tryptophan he is finding that P-5-P plus vitB12 plus high dose Inositol are having a very positive effect on his mood/OCD/anxiety

yes from my understanding, I think increasing melatonin decreases dopamine and increasing serotonin also decreases dopamine. people with TOURETTE tics react to increased dopamine with more tics as a rule so therefore anything that decreases dopamine generally tends to also decrease tics...hence when increasing melatonin or serotonin to optimum levels, one often finds a damping of tics. However we have found that taking these to levels beyond what the individual needs can have opposite effect I dont know enough about dopamine and other tic disorders to comment on that too much but I dont think all tic disorders are dopamine related.I do know that the tremors and shakes experienced by those with Parkinson's are related to too low dopamine levels and dopamine actually helps stabilize theirs. so one needs to be careful here as dopamine levels may impact different tic/movement/neuromuscular disorders in different ways

Guy 50 views can incorporate forum guests (ie not registered members) so not everyone who reads has ability to post also, you posted over a weekend when the forum is usually quieter as most are busy with family stuff etc if you do a forum search (top of page) on PANDAS you will most likely find all the info you need. There have also been a lot of recent threads with the info so just searching the first few pages should bring results. also look at the "essential threads" sticky at the top of the board there is no one definitive "test for PANDAS" but rather a series of diagnostic criteria I am not a PANDAS parent so am not up to date on all the info based on your worsening with Mono, I would suggest also looking at PITANDS, not just PANDAS

no fasting here LOL that would cause stress induced tic waxing in my son ) but yes, there is lots of info in many threads on the benefits of the epsom salts detox baths

Hi Lyn I havent read noticed that kind of time frame pattern in the 9 years of knowing of my son's TS related tics. one thing that does occur like clockwork tho is that he waxes monthly with the lunar cycle (full moon = more tics) but in between those times I dont know that I have noticed a pattern in terms of wax/wane timing.

hi footballguy glad this has worked for you when my son tried this hot/cold contrast some years back he had a negative reaction and his skin broke out in hives!!!!!!!!!! so I would urge people to be very cautious especially with kids we have members here who represent a very wide spectrum of tic disorders hot/cold shower contrasts are used by athletes etc to help eliminate lactic acid buildup in muscles and can provide a lot of relief for aching muscles etc. and may well help in some to calm tics but if for example, a PANDAS child is running a high fever from strep and in crisis, a hot cold shower contrast is not what they want to do! and could IMHO be dangerous!! there really isnt an"everyone should" solution here because everyone is dealing with many different conditions

Hi Evol and welcome like CSP, I have a husband and youngest son (now 18yo) with genetic Tourette Syndrome I have a link in my signature here as to what has been helpful for my son for people who have genetically inherited TS, magnesium deficiency does seem to be a core issue and so supplementing that is a very good place to start. Many members here have found that a magnesium product called Natural Calm and the children's version of Kids Calm is very beneficial, as are those epsom salts baths (my son has footbath when not enough time for a full soak, and we also keep homemade epsom salts creme on hand) there are many other potential triggers that you can also begin looking into and we will all be here to try to help you take it a step at a time....trying to absorb too much info all at once can become very overwhelming. Maybe start with our Essential Threads sticky http://www.latitudes.org/forums/index.php?showtopic=2459 you will find a lot of different issues discussed here as the forum covers many things that can cause tics, in addition to the genetic disposition for the disorder that some of us represent. not everything discussed is relevant to all of us, but there are some unifying themes that do seem to link much, one of which is we have almost all seen much improvement by eliminating "junk" food from the diet, especially the chemical food additives there is a helpful article on Finding Triggers for Tics along with other helpful info on the Latitudes/ACN website http://www.latitudes.org/tics_tourettes.htm I would join in encouraging you to talk to your husband. The stress of the "secret" is not good for you or your relationship, and now that your kids are showing symptoms of the TS spectrum, being able to face the challenges in partnership with your husband will be so much better for your whole family we look forward to getting to know you and supporting you wherever we can

Praying for motherhood to be a great joy and blessing for you, Carolyn...and for all to go smoothly for the rest of this pregnancy and birth of your precious little one I already said Congratulations in PM but here is another

Hello Kannaeara and thank you for sharing here. I do just want to remind you though that many people who suffer with OCD and other neuro-psychiatric illnesses may be people of deep faith. Many of these illnesses are genetic, and also related to CHEMICAL IMBALANCES in the brain The people opening up on this thread are speaking of *thoughts* not actions. I am a Christian too, and I firmly do believe in Jesus Christ as Lord of everything. And I do believe in His healing power. It is also clearly evident from the many people of faith who suffer illness that He may not always heal the affliction, even when He heals our hearts and saves our souls sometimes, nomatter how we pray and beg for total healing, it does not come and one has to also use the medical or natural means to help the illness, while never ceasing to turn to God for the spiritual health that only He can give. Diabetics suffer illness because they lack a chemical called insulin, and frequently need counseling on diet and lifestyle changes needed to stay healthier OCD sufferers need serotonin and/or other chemical adjustments in their brains along with psycho therapy and/or counseling to help them God hears all prayers but does not always answer with miraculous physical healing. Often His touch is felt in other ways. No less miraculous! I urge everyone to seek both spiritual and medical/psychiatric help for OCD. I would not want anyone reading here who HAS prayed and sought divine intervention and yet still struggles to have to suffer even more guilt than they are already burdened with.

hi Brink I havent noticed the probs with spelling but so agree it sounds like he is having stress induced tics/behavior issues. the routine of school/homework is real hard for some kids and especially for one used to a homeschool schedule. my son has always struggled really hard with early mornings have you considered maybe reducing the melatonin dose some? if I take more than 300 MICROgrams it leaves me mega groggy in the mornings.

I noticed that iHerb.com now sells all Dr Rubin's Garden of Life products, including Vitamin Code. I got the booklet with my iherb order today Jordan's products are pricey IMO but very pure and carefully formulated Cost less at iherb than elsewhere (His book, The Maker's Diet was the turning point for my son in managing his Crohn's Disease. I use a lot of the recipes in the back too)

may I suggest that if any more personal issues need to be sorted out it gets taken to PM rather than posted to the board please. you are both valued members here, each with a very relevant point of view

just a gentle reminder that sometimes the written word does not convey the meaning as much as a face to face discussion can and misunderstanding can come from misinterpretation of what another has posted one of the things that makes this board so special is that we have so many and varied experiences and dx, yet a common theme of caring for one another and wanting to share in the hope that someone else can be helped along the way. I dont think we should ever see that as being anti one thing or pro another, but rather just the expression of different experiences, that in the end serve to help us all see a more holistic picture

Michele also remember that TSA can help, often with an advocate (some provide free service) http://www.tsa-usa.org/educ_advoc/educatio...ocacy_main.html big ((((Hugs)))) your son can sure be proud of you for all you are doing to help him

Hi Lori and welcome there are a number of supplements that elevate serotonin but do be sure to check with your physician before trying any and *especially DO NOT* combine them with any meds as dangerous interactions can occur. It is also not a good idea to combine these supps without guidance from a qualified professional and it should be noted that some people may still have side effects from supplements some of the supps that are used include inositol, methionine, samE, l-tryptophan, 5HTP, GABA, phenylalanine, vitB12 and vitB6 and also the herb St John's Wort(SJW) my son uses inositol, methionine, vit B12 and vit B6 (in the P-5-P form) he used 5HTP and SJW in the past but finds they make him edgy and feel weird now inositol is also a B vitamin and is generally well tolerated by most people

Hi Hope I sure understand your concerns and would be in a real quandary myself on vaccines if I had to do it all over again. The diseases are awful....but the growing evidence of harm from the vaccines cannot be ignored. A real dilemma I think most states have now removed *thimerosol* (the mercury containing preservative) from their vaccines but that isnt the only aspect of the vaccinations that is of concern. I am really not fully clued up on all the vaccine info but have heard that separating the MMR into the 3 shots is better than the all in one blast that a kid's immune system gets from the combo Kim might have more on this for you here is an article by David Kirby on the subject http://www.huffingtonpost.com/david-kirby/...mb_b_93627.html and here is more info http://www.evidenceofharm.com/index.htm

yes, DAN doctors are fully qualified medical doctors who are able to write prescriptions

yes, the urinary issues are clearly recognized as a PANDAS symptom, so that is not being in any way disputed. the concern is just that some new members read posts here and can become very confused, so Caryn and I were only suggesting that one has to look carefully at the whole picture, as the original post myrose made related to a child who does *not* yet have a clear diagnosis. Where discussing these things on forums the way we do often leads to invaluable insights that help with diagnoses and treatments, we still do have to urge everyone to consult with a qualified health practitioner for diagnosis and treatment. Doctors arent always clued up yes, and that is where taking the info gleaned here to them can often be so very helpful. But we do have to be very careful not to diagnose or prescribe for one another's kids.

Hi Michele yes there seem to be some kids with TS (and even some with PANDAS and other issues that manifest tics) who exhibit certain Aspergers sx (my son being one) .... have you ever taken a look at Leslie Packer's excellent website called Tourette Syndrome PLUS http://www.tourettesyndrome.net she covers a wide range of topics that were a real blessing to me when we were going thru the initial phases of my son's dx

Hi Michele do try to also balance all you are reading and hearing with the fact that often our kids can have a lot of symptoms in common with some disorders BUT that does not necessarily mean they have those disorders. Many of these neuro issues are spectrum disorders and syndromes, which means a number of things can overlap and sometimes make clear dx very difficult. and to all our members...... just a gentle reminder to be real careful when suggesting treatments or diagnoses...... forums like ours are so very valuable for sharing info and experiences, but we really do need to be very careful about crossing the line on diagnosing, as well as prescribing treatments