Chemar

Hi Caz we had my son's testing done(2001) at the Shands Clinic, where Dr Tanya Murphy is one of the physicians at the forefront of PANDAS research. I must confess I dont recall exactly what tests they ran as all came back negative for him, but I do recall that they drew blood and explained that they were going to be testing for evidence of all and any strep activity in his system, as well as checking on other viruses too. I know that the diagnosis of PANDAS is clinical in that the throat swabs and blood tests give information that leads to the diagnosis but arent the diagnosis per se, if that makes sense. The combination of the test results, coupled with clinical observation and the presence of sudden onset tics, OCD etc all work together to bring about the diagnosis, which is often only confirmed by the diminishment of the symptoms with prophylactic antibiotic treatment. I found the old thread on Ronna's info on PANDAS which I hope will give clearer info. In the second post, Ronna goes into detail about the throat and blood tests http://www.latitudes.org/forums/index.php?showtopic=374 since then, there has been an explosion in further knowledge on PANDAS and so hopefully other posters here may have more recent info. I am sure Ronna has much more, but it may be a while before she pops back in after the birth of her baby son last weekend

Hi Sarah somewhere along the way I think I may have missed that your child is on a soy formula. Where soy may be good for some people, there is growing evidence that it can cause health problems for others I would definitely check whether your child has a soy allergy or sensitivity In addition, if you do a search for soy formula on http://www.mercola.com you will find a lot of info from Dr Mercola who has become very vocal in his anti soy warnings This may have no relevance to what is causing the shaking in your child, but it is worth checking as part of your path to helping him

Hi Robin yes, I would urge testing for strep even if he has a genetic TS diagnosis. Not only can PANDAS exascerbate the TS, it can actually be the trigger for it. And PLEASE be aware that to test for PANDAS a throat swab is really not what you need. They need to take blood and test for ALL the strep viruses, not just the type that causes the strep throat. When we had our test they also did a momo spot (for Epstein Barr) and a couple of the other "stealth" viruses Frequently doctors do throat cultures and declare that there is no strep, when a blood test reveals a very different situation! Especially as you say your son has had strep throat twice in the last 6 months...I would strongly urge you to have bloodwork done to check re a PANDAS connection. if your doc doesnt accept or understand PANDAS, use another one for this. There are a number of times that I have encountered parents who were persistent in getting complete virology testing done and found a hidden viral cause for their child's sudden surge in tics or OCD...and immediate relief when the correct anitbiotic treatment was started.

well said Andy. Chlorella is a green algae and, in addition to its detoxifying properties, research has shown remarkable benefits in cancer treatment etc. I was quite astonished to read that this person was dismissing it as "a sulphur food" I used it to detox from the excessive mercury overload I had from dental amalgams, and my son used it to mop up his mercury. Both of us had excellent results from it, and noticed a very positive effect in our overall health and digestion too from it. It was recommended by our Integrative Doctor who also has vast experience in chelation and other detox treatments, but felt that chlorella was by far the best treament for us. I do agree that one should be very careful with those jumping on the alternative bandwagon who dont have the correct qualifications or experience to administer these treatments, and fully agree that just because something is natural doesnt automatically mean that it is safe! That is why I stress using natural treatments under the guidance of a qualified physician. Integrative doctors and DAN doctors are fully qualified MDs who have gone further to specialise in alternative medicine. There is a wealth of information on the Internet and that is good. However, we always need to carefully analyse what we find!

Hi Robin just wanted to let you know that you remain in my thoughts and prayers. I have absolutely no experience with DAN doctors and so I cant comment on them or their protocol, but certainly all I have heard seems to be very positive overall. As I have mentioned before, we have an Integrative physician who certainly was able to give advice on treatment of OCD/anxiety/depression and we were then able to check all this with the psychiatrist who was also knowledgable about alternative treatments. Basically we had the same answers from all.......that OCD is best treated by elevating serotonin, and there are a number of ways to do this naturally. The results were dramatic for my son and his OCD quickly became a negligible factor. Robin, even tho your son may be very healthy, you may still want to have a comprehensive strep titre done if you havent already done so. My limited understanding of PANDAS is that even when there is no indication of strep throat or obvious strep infection, yet there may be "stealth" strep or other viruses (eg Epstein Barr/mono etc) that may also cause a sudden onset of tics and/or OCD Hoping you get rapid answers and even more rapid results! God Bless Cheri

Just wanted to share the good news that Ronna's son was born on Friday Lots of love to you Ronna from all your friends here

Hi Matthew and welcome although there are many of us here who have had success with using alternative/complementary treatments for tics/TS, I would urge you at the outset to try to find an Integrative doctor to guide you thru all this. (a doctor trained in conventional medicine with additional training in alternative medicine.) From the list you give, the only supplement that I am familiar with as a TIC reducer is l-carnitine. It works well for many people, but some do find that it has unpleasant side effects. seroquel is a prescription drug. 5HTP and Inositol are helpful in elevating serotonin levels, and so, are more beneficial for helping with the depression and /or OCD that sometimes accompanies TS. I have personally not heard them described as actual tic reducers tho. Inositol is one of the B vitamins and is considered relatively safe. 5HTP should really only be used under physician guidance as it is a potent serotonin stimulator and, although it worked wonders in reducing my son's OCD, some people get very "edgy" on it, and it should never be combined with SSRI medications or with other serotonin elevating supplements without a doctors guidance, as serotonin spiking can result, which is very dangerous. I have no personal knowledge of the other substances you mention as being used to treat tics, so I honestly cant comment on those. It is generally believed that MAGNESIUM is by far the most beneficial supplement for diminishing TS tics, especially when it is used in a compounded form with taurine(an amino acid) as magnesium taurate. However it too needs to be balanced with calcium (in a calcium: magnesium ratio of 2:1 B vitamins are important too, as are the essential fatty acids (omega 3 and omega 6) Some people benefit from fish oil as the omega 3 source, but others have found it increases their tics and do better on flaxseed oil. Omega 6 comes from borage and evening primrose oils. What many of us here have found is that the best results from supplements have come when we have also focussed on boosting the immune system, detoxing the body and removing any allergens and strengthening the digestive system. In addition it is a good idea to start identifying your specific tic triggers and try to avoid them. here is a very helpful article by Sheila Rogers on tic triggers http://latitudes.org/articles/finding_triggers.htm My own son benefitted enormously from this natural appraoch and went from having very severe TS/OCD etc to very mild in just a few weeks after we began alternative treatments. I have put together a thread on what we did to help him http://www.latitudes.org/forums/index.php?showtopic=687 Many others here have additional very useful treatments that have worked best for them or their children and so I do encourage you to start doing some back reading here, especially of the very helpful threads that Claire has put together on a variety of treatments protocols. all the best to you and dont hesitate to ask questions...everyone here is always very supportive and willing to help and share their experiences and research.

http://www.mercola.com/2005/jun/25/alternative_medicine.htm

good for Scarborough for having an open dialogue with RFKjr I have a feeling that AT LAST this issue is going to stay on the front burner

I am so pleased to see this action being taken We were really miffed at the slanted coverage that ABC gave last night, and so pleased to see the NAA following up on it! thanks for the info Sydsmom

Hi Sarah what a kind and caring person you are! I know how you feel about this as I also have encountered people with tics and so long to be able to point them in a positive direction. It is a fine line tho between helping and interfering isnt it. Maybe just take a steady approach to this and pray for the opportunity to open a dialogue with this person. You could print out maybe that article that Sheila has done on Tic Triggers http://latitudes.org/articles/finding_triggers.htm as well as other info you have found simple and useful and keep them in your purse when you visit the store....if the opportunity arises to share the info, then at least you have it. And just keep him in your prayers too....when God brings people into our lives for a purpose, and we are open to acting on it, He WILL make a way

Hi Sarah it is so hard to advise on this because it all depends on the approach and attitude of the doctor. Some are thankfully very open to discussing and considering complementary medicine, but others are not, and in some cases vehemently so (just ask Kim ) It may be best to first let the doctor do the examination and present the findings to you and then you can maybe open the dialogue to talk about what you have learned here....that often a weakened immune system/compromised digestive system/ heavy metal and or other toxic overload can be a major trigger for tics, along with questions on PANDAS etc. See what the doctor's reception is to these issues and if it is open, then hopefully they will be willing to conduct the right tests. if not, I would simply take whatever diagnosis you receive and try to find an Integrative(MD/PA) or DAN doctor to go further with. It is good for you to ask as many questions as you can, but do remember that most conventional doctors arent receptive to alternative/complementary medical therapy, and so dont be disillusioned if you cant get support in those areas. You are beginning your journey toward helping your child and there will be many stages....make the most of each one and learn as you go along. Let us know the outcome of tomorrow's visit........

Hi Karen yes, for my son there definitely was, and even tho it is now all so mild for him, yet the waxing of the moon still seems to be a trigger period for him I am not trying to suggest that this is a finite thing for others or that there is any quotable scientific research to prove this...but I have heard and read that healthcare workers do note the correlation. Theories that I have heard range from the lunar effect on body fluids in a similar way that it impacts the ocean tides, as well as electromagnetic impulses at full moon and a lot more. However, nothing beyond speculation and anecdote at this point. Once we had noted the intense waxing of his tics and OCD during a couple of full moons, I decided to keep the calendar, without telling him tho as I didnt want to have autosuggestion influencing anything. The results from my records were enough to convince me that, at least for my son, there was a very real connection. Now that he is so stabilised, we have discussed it and he is quite fascinated by it and aware of it too. Strange but true............

thanks for the heads up on the news segment Kim I just watched it. So glad that they at least covered it, but of course, as is to be expected, those who have a vested interest in denying the whole thing were vociferously doing so!

hi Daniel Generation Rescue is a very informative and organized group....we had a thread about it here recently....excellent resource on so many things http://www.latitudes.org/forums/index.php?showtopic=1234

When I read the article this morning in Rolling Stone by following the link in the ACN newsletter, I went thru so many mixed emotions. Rage at the greed and corruption that would permit children to be harmed this way, and a deep sorrow for the little ones whose brains suffer damage because of it. And an undescribable frustration because of the people who still scoff at us for even suggesting the link between mercury and neuro disorders. Thanks for posting the full article here Andy. And three cheers for Bobby Kennedy Jr. for striving to draw attention to this tragic coverup.

Sheila was very warmly received and it was a real treat to hear her speaking firsthand on the many things that we discuss here. She is probably still making the long drive back to her home, but she was surrounded by folks wanting to know more after the meeting, and graciously stayed on to speak to them one on one. So nice too to meet a really nice lady who reads here tho she doesnt post...HI Lurker To sum it up, a smalll turnout but a BIG impact. I am so delighted to have met Sheila and for my son and I to have been able to give testimony to the truth that there is hope and success to be found in complementary and alternative treatments.

I received this via a PM and I am assuming from the first line that sophieschoice would like me to post it openly.... WELCOME SOPHIESCHOICE. I am so glad you have found solutions here it is with great emotion that i send this message ,i hope it goes somewere that people will read it. i am a great internet surfer but when it comes to typing and emailing i am hopeless.anyway here goes- i live in sydney australia and two months ago or maybe more ,everything has been such a blur,i self diagnosed my eight year old son with tourettes with one dr google search.all my friends and family thought i was insane.'dont be ridiculous, get off the computer!!!,he is divine, georgeous ,clever ,funny ,sensitive; mildly eccentric perhaps but he doesnt walk around swearing etc.' they all thought i was losing it.im his mum, i know him ,he is part of me, i see more than even his dad. all his adorable little quirks ,things that we loved about him and infuriated us about him started to make sense .the more closely i now looked with my new knowledge , the more tics i saw. finger clicking , pulling of clothes smoothing the homework page, knuckle cracking .i saw a child psychatrist ,an exceptionally highly regarded one ,first, who was marvellous with him and decided that he was reluctant to diagnose him with tourettes as he was successfully flying under the radar as his vocal and motor tics at this stage were not socially 'strange',well for a little boy , even his teacher had not noticed.i knew . he was clever , he was trying to protect us from too much knowledge ,to protect our son , in a way from me . it was too late, i knew too much.it was around now that i had read vague references to food intolerances and heavy metal problems.my son had been a severe asthmatic which he had since grown out of but i knew there were unaddressed intolerances and i organised blood tests and hair analysis; which for my family is seen as quite alternative as i come from a very conventional medical background,mother nurse, father dentist ,brother psychiatrist, one of five children ,nothing ever wrong with any of us.etc.before i got results i discovered these forumsand started printing off information and hilighting things with my little yellow highlighter.back came the blood test results , intolerant to ; wheat ,gluten,corn,msg,aspartamine ,cane sugar yeast oysters tuna,sunset yellow 110 ,;;; then back came the hair sample ,copper through the roof!!!!!!!!!!!every thing i had highlighted except cassein he seemed to register for. if i had not found you guys here at latitude forums, in particular chemar and claire ,you are so kind and generous in sharing your knowledge, you have saved a small boy whose tics did get worse and he ceased to fly under the radar ,you have saved a family , and a classroom, a football team and a school band. i immediatly introduced a sue dengate style diet and eliminated screens for two weeks; any thing to keep off medication. the effects were virtually immediate.all my children have responded positively,you have changed the course of my life and my sons and i thank you,and i speak for all the other people around the world who have benefited from your generousity and don't email-that is usually me-xxxxx

dear Robin thank you so much for your defense of me after that slanderous attack on another forum I decided that it was wiser to simply report the attack to the moderator rather than try to answer it and risk disrupting the peace of that board, and I am thankful to see that the moderator acted swiftly in response to my request and deleted the thread. I really appreciate you posting what you did. thank you

Brenda, yes we certainly found the OCD going thru waxing and waning phases. I dont know if this is just the subtype that is comorbid with TS or all OCD. Once my son's seratonin levels were stable, the wax-wane stabilised too and the overall intensity decreased dramatically I have raised this issue before and I know it sounds sci-fi ...... but many health care pros can also vouch that certain neurological and psychiatric etc symptoms DO seem to wax with the full moon. We definitely noticed a correlation with my son's tics and also with the OCD. I honestly dont know what the actual scientific basis is, but we kept a lunar calendar for many months and it was a clear and uncanny fact.

Hi Nick I must say I havent heard of anything similar to what you are describing in terms of a full blown hallucination setting of TS. However, I certainly do know of kids who have begun ticcing after a very stressful even or period. When my son was still suffering with severe TS/OCD he did have very intense phobic periods, but I dont believe they were anythi ng like what I understand an actual hallucination to be. Have you ever spoken to a therapist about it? This may be totally unrelated, but I do know that exposure to certain chemicals or toxins can produce hallucinatory experiences. Could you accidentally have had such an exposure? bye now

Hi Brenda what you are describing (pulling out hair) is known as Trichotillomania, and it is very much a recognised symptom of OCD. OCD is waaaaaaay more than just doing something a certain number of times and is a very complex disorder, mainly caused by a deficiancy in seratonin, amongst other things. Here is some helpful info on OCD from Leslie packer's excellent TS website http://www.tourettesyndrome.net/ocd.htm People with TS often exhibit some OCD behaviour that is unique to this subtype where tics and OCD symptoms sometimes interact so that it is often hard to determine whether one is dealing with a tic or an OCD. I have lots of info on OCD if you need more.

Hello John I really think the best advice would be to see and ENT (ear/nose/throat) doctor. It may be something as simple as a wax buildup (happened to my eldest son once on a plane trip)....but you really should seek professional advice with something like your hearing. all the best

yes, I agree with Andy on that. Regular Tap Water has LOADS od chlorine in it and just a shower or tub can deliver quite a chlorine punch. Either a whole house water purification system, or individual filters on faucets and shower heads makes a really big difference. And again in agreement about the Epsom Salts tub in pure water asap after swimming to eliminate the chlorine effects. Robin, my son's sensitivity to chlorine became so intense that he really just became afraid of swimming pools ....not only was he ticcing badly, but eventually he also got hives whenever he entered a chlorinated pool. It was enough to just put him right off!!

Hi Sarah and a big welcome. With a little one that young it really is hard to give any advice other than that you are doing the right thing by seeing a specialist, and to encourage you to keep his diet as natural as possible and avoid all articifial ingredients. Also, if at all possible, when he gets his vaccinations, if possible try for ones that are not preserved with thimerisol which contains mercury, and to have them separate the MMR into 3 separate vaccinations, measles, mumps and rubella rather than doing the 3in1 shots. A good pure liquid multivitamin ( no artificial colors or flavors) is also a good idea. Till you have the neuro's input there really isnt much more to do other than this I dont think...tho others here may have further input on anything I have missed. Once you have the neurologists take on things, there are a lot more pointers we may all be able to give. try not to worry tho....this may all have a very simple explanation and solution.