Chemar

(((hugs))) to you. Remember you are a wonderful mom dealing with extraordinary difficult circumstances. Hoping you find extra strength and peace to persevere.

Hi deep breath and remember........this too shall pass! It may be a good idea to do some sleuthing and try to detrmine if anything may have triggered this tic and then work to eliminate it I am not sure if you had ever tried the L-Carnitine? Many find it really helpful for vocal tics, including the screaming ones

Hi and welcome. As tics can be caused by a variety of things, it may be best to first try to determine why he is ticcing. Magnesium is usually helpeful for people who tic due to Tourette Syndrome, and usually they take around 300mg of supplemental magnesium a day. Many here use the ionic magnesium citrate form as found in Natural Calm powder, that gets dissolved in water or juice etc. But most magnesium supplemts are also ok except for magnesium oxide, which is very poorly absorbed. I would suggest you take a look at our Helpful Threads link pinned to the top of this forum to get some more info on what can cause tics as well as various treatments. The book by Sheila Rogers on Natural Treatments for Tics & Tourette's has a wealth of info

Hi and welcome If tics run in the family you may be looking at genetic TS, but that does not mean PANDAS/PANS may not also be a factor, so you are very wise to also pursue that path. The very best group to advise on the best ways to evaluate for PANDAS are the members on that forum. I know there is no "one test" that is absolute for PANDAS, but there are blood tests, clinical evaluations etc that can give pointers. Also ask them about the Cunningham Test Here is that forum http://latitudes.org/forums/index.php?showforum=17 I do just want to caution that IF there is a chance that your child does in fact have TS, do avoid the steroid bursts that some PANDAS docs use to see if symptoms subside and so point to PANDAS. People with TS do not tolerate steroids as they interfere with dopamine levels, which can exacerbate tics.

Yes, I would definitely suggest you post on our PANDAS forum now that you have those results. Be careful in the choice of probiotics as some kids do not tolerate all of them equally...again the PANDAS members can hopefully offer some guidance on this. (my son cannot take supplement type probiotics so gets his from foods like Kefir and saurkraut etc....but he is TS not PANDAS)

Seems a bit of a paradox to what many on the TS board have noted...that their kids actually tic LESS when given anti-histamines like benadryl etc. FWIW..........My son cannot tolerate high histamine foods (and has genetic TS)

Hi and welcome Most of us here have opted for a more natural approach for managing tics, rather than the medications which almost always seem to have side effects. There is a Helpful Thread pinned to the top of the board (also linked in my post signature below) where you will find a lot of interesting info My son is now 24 and has had tics since very young, with genetic TS. We started out on meds, but the side effects were very severe, and then found the info on magnesium, diet etc and it was life changing for my son! People meeting him now would never know he has TS as the tics are almost non-existant....and that for someone who had it so severely as a child.

Could it possibly be more to do with what he is eating rather than what is being eliminated?

Sometimes the pesticides/fertilizers used on sports fields can also be tic triggers....

Hi there I moved your post from the TS forum to here as it seems you are asking a PANDAS related question? Also, the thread you had posted it to on the TS/tics forum was related to a specific dental procedure so not in any way relevant to this post, which may just have confused others there.

Hi so sorry you have not received a reply. It would be best to post this on our PANDAS forum http://latitudes.org/forums/index.php?showforum=17

Cervical vertebra being out can actually trigger tics...at least for my son with TS that has been the case. It is one of the reasons that he has consistently seen NUCCA chiros as when he has had gentle NUCCA adjustment it does seem to have calmed the tics. (http://www.nucca.org)

If the tics go away when she lies down, and started after that fall I would INSIST the neuro do more testing related to anything that may have been caused by the fall....they should at the very least do an MRI and possibly even a brainCT scan??

Hard to answer this Mar, as I am not aware of H.Pylori being passed on that way. I do know the presence of any bacterial infection always has the possibility to trigger tics and of course GI issues. An excellent natural treatment for H.Pylori is the supplement Mastic Gum aka Mastica along with DGL-liquorice (MUST be the DGL form not the regular)

Hi and welcome so sorry to read of all your family is going through! With all the stress factors plus her fall, it would not suprise me if these tics are more related to that than TS, especially with no family history. I know it will be hard, but try the best you can to relax around her and not add to her stress levels by showing your own anxiety or letting her know you are conscious of her tics. Often that in itself is a trigger. There are many other things that can trigger tics apart from TS so do take a look at our helpful threads pinned to the top of this forum (also linked in my signature) You could also try doing the Epsom baths that many find helpful....2 cups of Epsom salts (magnesium sulfate, available at most supermarkets and drugstores) dissolve in tub of warmest water confortable and soak for around 15-20 minutes. The magnesium in the salts is known to releive tics and also helps with relaxation while the sulfates are excellent for detox Best done before bed as it can male one sleepy.

?? I agreed there was no "definitive" test? Said so in the first words of my last post. What I was mentioning was that there were testing and clinical criteria that knowledgable physicians employ to at least attempt a baseline evaluation. As there is no definitive test, surely one can only do everything known to check for the possibility. And yes, I have always agreed that one should look into PANDAS when a child meets any of the criteria for it. That is why my own child was evaluated by Dr Murphy, even though we knew there was a family history of TS. I wanted to be sure to check everything, and in those days, PANDAS was relatively unknown. So we drove from Orlando to Gainesville weekly for continued testing and clinical evals from Dr Murphy and her team. My son responded badly to abx, as he always has, and had zero improvement from the trial runs, nor subsequent periods on them. No steroids allowed as they exacerbate TS SSRIs made him psychotic! Then when we took him off all the meds and went onto the dietary modifications and supplements, he had dramatic improvement! ( I actually read about Bonnie's protocol back then in a print version of Latitudes magazine, which is what first brought me here) My son was still a patient of Dr Murphy's team at that time, and they saw the amazing improvement and felt this was further verification that he was not having his symptoms due to PANDAS albeit maybe a PITANDs component so we also included many natural antibiotic foods and supplements (He had Epstein Barr virus when younger so we have always known there may be some form of infection connection) Anyways, I am not sure what we have to agree to disagree on, as it seems that we are saying the same thing maybe just differently.

I do need to clarify something....my position is not related just to the *outcome* of the interventions for my son, nor to his specific circumstances. It is related to the *willigness* of some school districts to do everything they can to help their students who have special needs....as opposed to those who seem to do everything they can to put obstacles in the way, and then get rather aggreessive and challenging toward the parent trying to just get help for their child. The 2 school districts (who are overseen by their County schoolboard) were not only willing in our case, but they went out of their way to accommodate and provide services that were even beyond my expectations. As I had contact with the other parents, I know this was not soemthing unique for my child. However, a close friend in an adjoining county had nothing but horrible problems, and her son had a recognized LD, nothing else. The number of parents who have posted on the TS forum over the years about struggles to get anyone to even listen, nevermind test and accommodate have been telling! Even after TS was classified an educational disability, the struggles continue for some, whereas others get what is needed with not much effort. Again, it seems to me it is the school administration and or district that makes all the difference. As I said before, seems to me some are willing to do what is needed and some are not, or just do not know. Yes, I am thankful my son had a good "outcome"....but that was a direct result of the schools being willing to pave the way to make it smoother to reach that outcome.

There may be no "definitive" tests, but the strep titres plus other clinical evaluations are freqently used as "testing" criteria, are they not? There is also the Cunningham test now as far as I know, which, though not definitive, certainly does give some valuable pointers. My own son was evaluated many years ago by one of the forefront PANDAS researchers, Dr Murphy, and based on his bloodwork and having no history of strep at all, plus some additional clinical evaluations by her and her team, she felt he was not PANDAS, especially as there was generational TS on his father's side of the family. His tics and OCD responded very favorably to dietary and supplement treatments etc

Well all I can say is my son recieved excellent special ed services under his 504 in 2 different counties from K4 all the way till he finished school. They provided all of the accommodations he needed starting with the early dx of ADD/COPD/SID, then advanced it all when the TS dx came and again when the Chron's dx was added some years later. They took heed of all the doctor's letters I had, plus the evaluation I provided from a special ed psych that we had privately hired. I had regular meetings with all his teachers, and the school nurse plus head of special ed were always present, and they went out of their way to ensure that all of the teachers were following the accommodations to the letter. My son was a straight A student, but could well have lagged far behind were it not for all the invaluable help and accommodations he received. When the Chron's got so bad that he had a lot of absences...they helped him get on the home/hospital plan which co-ordinated with the State online school. I cannot sing their praises enough and again, this was spread over elementary, middle and high in 2 counties as we had a home move during that time. Yet, I have heard so many nightmare stories from many parents in different school districts around the country! So my question Jag is....if it can be done in my area....why not in others? I have the greatest respect for special ed systems as they do provide invaluable services. But it has become clear to me over the years that some of them either do not know what they are supposed to do....or actively try to avoid doing it! The latter, frequently to the great detriment of their students!! The former at least are willing to try once an advocate or other informed party presents them with what is required. ok I guess that is more than my 2c worth

I agree you need an advocate...if your child already has a 504, then the school is not correctly implementing it....which btw they are legally bound to do!! It sounds to me like they either don't have a clue, or are trying to dodge their responsibility. An advocate will help you get what your child is legally entitled to at school.

Hi Nipper How old are you? There are so many things that could be causing the symptoms you have so it really is impossible to say if it could be TS. Neurologists are usually the doctors that diagnose TS But many people are told they have TS whgen in fact their tics are caused by something sle...like food or environmental allergies and even things like strep or other infections

I did reply to this on your other thread. There really is no definitive answer yet. Perhaps as we grow more in genetic analysis, they may have clearer answers I think actual TS is genetic, and that often those who do not have hereditary TS are misdx and that their tics are more likely caused by somethings else. It is also important to note that just because someone has the genes that predispose them to TS, does not mean they will mainfest it. My personal belief is that it is likely something that triggers the manifestation. So having genetic TS does not preclude the possibility of allergies, toxins or infections etc etc from also being a causative factor

Hedgie if you suspect PANDAS/PANS I would suggest starting on our PANS forum to get info http://latitudes.org/forums/index.php?showforum=17 also look at the helpful threads section there, pinned to the top of the forum One of the most informative sites on PANDAS imho is http://www.pandasnetwork.net (blakes_mom also linked it for you) Be sure, if you investigate PANDAS/PANS, that you go to a doctor who actually knows about it as many do not! TS is not always hereditary according to the "experts" but I often wonder if that is just because many cases of tics caused by other factors are being misdx as TS.....my personal feeling is that TS is genetically inherited, but even there, often other factors can act as the trigger to "switch it on"

ps this may also be helpful info for you http://pandasnetwork.org/resources/for-the-school/

Hi I just noticed the title and wanted to mention that possibly a 504 plan may be the way to go? http://www.ncld.org/students-disabilities/iep-504-plan/is-504-plan-right-for-my-child