jimTheBassPlayer

I am unfamiliar with the urine test for neurotransmitters .... when is it a good idea to have that test ? What do the results generally tell you ?

Did a consult via Skype with Angelica Lemke ... whose name I got on this forum I believe ... although it was the Pandas forum I think. Haven't tried the treatments unfortunately ... but I do believe there are some sucess stories with it.

I've read the book and am a firm believer ... anecdotally at least. I would love to try it but would need my ex to be on board 100%, which is quite a sell at this point. Fortunately his tics have been manageable ... perhaps at some point we can give it a try. I think all parents should read the book, it does an excellent job explaining how the gut, the immune system, and the nervous system are connected ... knowledge that is extremely important when making health decisions.

Mom kept the tick so we're good there. And found a place to test the tick, so we're starting that process. Local Urgent Care will prescribe preventative abx with 72 hours so we're good there. We're touching base the pediatrician, would prefer to have them on board for the process preferably. Need to look into possible interactions between his current Meds (Intuniv 2mg) and the possible abxs he may soon be on. Much thanks everyone.

Hi, My DS12 has Tourettes and we've been treating him for his tics for a couple of years now. We found a tick on him today, not sure if it is a deer tick or not. I am obviously concerned about Lyme, I certainly don't want him to have that in general, and especially so because he is already experiencing neurological symptoms which may or may not be PANDAS related. I am just wondering if there is anything I can apply topically which could reduce the chances of a lyme infection? Or anything else I should do. How long would I have to wait before a Lyme test is feasable? Thanks, -Jim

Our DS12 Started Intuniv around the start of the school year ... and it did help his tics ... he was having basically constant vocal and motor tics (head rolling, and a sort of grunting/snorting noise) we were concerned as he was starting a new school (middle school) and was ticcing badly. The intuniv did help. The head rolling stopped, the vocals were reduced ... he still had some vocal, and his motor switched to a less noticable tic ... we call in "banging" where he would basically punch himself in the hip ... After Dentist he had a flare up of his old breathing tic ... constant deep breathing with a sighing noise, one of my least favorite of his tics ... that thankfully only lasted a few days ... Recently his neck roll has come back, but milder and not as frequent ... his seasonal allergies are really acting up so hoping thats the reason and that theyll subside again ... wasn't aware of the diminishing effect with Intuniv, but I'll read up a bit more on it now. DS has put on a little weight, he has a little gut now, he has always been as skinny a rail though ... not sure if its related, but its possible. Didn't have too much trouble with sleepiness, probably was groggiest when he first started, but he was getting up at 630 for middle school for first time so it could have been that. All in all I've been happy with it, as its made his middle school transition more manageable and the side effects have been minimal ... hopefully it continues to help, we're not really fond of meds at all, so we'd be reluctant to try others ... Just started trying acupuncture ... he's done it once, more of a "warm up" session as he was very nervous about it ... and his allergies have been horrible, hopefully we get more of an indication of how much that will help after the next session or two. -Jim

Were the fillings a mercury amalgam ? Would be good to know if mercury is something that should be considered. There are natural chelators like Chlorella that can reduce mercury levels if that is the case, although I have not looked into its affects on TS, if any. Flouride is also a definite neurotoxin ... so that could also be contributing to the problem ... sufficient Iodine levels are needed for the body to remove excess flouride ... it is iodines job to rid the body of both excess flourides and bromides ... Just my two cents .. My sons last bad flair of vocal and breathing tics came after a routine dentist visit ..... -Jim

Interesting ... well there are certainly direct links between bowel health and many of these neurological conditions ... has your daughter had the surgery to repair the problem ??

Chemar I went and did a little looking, and contrary about what I had read about it ... you are correct ... olive oil has a higher smoke point than unrefined coconut oil ... I need to go back now to some of the sources I got my original sources and recheck ... I feel like there is some bad info out there on the issue. http://en.wikipedia.org/wiki/Smoke_point -Jim

I would also read up on the GAPS diet. As I think whether it is Pandas or non-genetic Tourettes it all starts in the gut, and as you mentioned your child has a very restricted diet ... I would assume it is a lot of carbs, starches, and sugars ... is a pretty standard thing for GAPS kids. The good thing about the GAPS book is even if you do not try the full diet, just incorporate a few things, or none it all, it still does a wonderful job of explaining how the digestive system is related to immune health and neurological health ... how things generally get messed up in the first place, and how to fix it. What is good for the gut and what is not ... etc. I think all people, or parents of people, with neurological symptoms should read and understand the concepts in the GAPS book. -Jim

Chemar, while all oils will oxidize at some temp during cooking ... and decreasing their health benefits, or even making them harmful, coconut oil is actually much more tolerant of heating than olive oil ...

We have not yet gone the environmental route ... I would like to find a good doc to rule out some other factors that we have not yet, so if anyone does know of a good one in NNJ the info would be appreciated. Currently we have DS12 on 2mg Intuniv ... and it has brought his tics down considerably ... while the vocal and motor tics are still present .. the more noticable ones are gone, and he is doing well socially in middle school, so we have not been as aggressive in seeking out alternative therapies ... his mom is less receptive to such things, so we have been staying the course for a while. Interestingly, DS had a flare up of his breathing tic ... which he takes almost constant deep breaths with a sighing sound ... out of nowhere, after months of stability ... we hadn't seen that tic since July ... Only two changes had recently occurred ... he has been grounded for some school homework stuff, so he had not had video games in 2 weeks lol, and he had been to the dentist THAT day ... although he swears it started BEFORE the dentist. (He was with mom) So this week for the first time in a long time we were starting to talk about next steps, because ONE DAY with the breathing tic and the kids in school were asking questions. So I was looking into accupuncture, and got a reference for a good one by me ... I have looked into homeopathy, and have consulted with Angelica Lemke, and have the remedies in my hip pocket but have not yet tried them, and we were discussing whether or not to try it ... And the third route would be the environmental doc ... and this thread popped back up at the same time (:^) Thankfully his tics were a little better yesterday, and much better today, so hopefully it was a minor flareup. But again, if anyone has any info on an Northern NJ environmental doc that would be great. On a different note I have some interesting thought (I think, anyways lol) about "hearing" tics ... after the experience we just went through with this flareup ... but I'll save that for its own post. Thanks! -Jim

This link, which I've posted before, I think is relevant to this conversation ... low ferritin stores can affect Tourettes. http://www.ncbi.nlm.nih.gov/pubmed/16816233 -Jim

Agree with Fixit ... mostly in the gut. The ABX is horrible for the gut, so it could start making things worse again. So definitely try and get that under control. Also, teeth grinding (bruxism) is a sign of magnesium deficiency, and as magnesium is a major tic reducer as well, you may want to get some Natural Calm and try and get your levels up. Sometimes absorbtion can be an issue to, especially if gut is bad ... Epsom Salts will help regardless of that. -Jim

Nothing really concrete to offer here, I've thought about it a bit ... seems oddly coincidental. So with a grain of salt I offer basic speculation ... The body in general will attempt to expel waste and toxins through the feces and the urine ... if for whatever reasons those methods are not sufficient or not working the body can expel toxins through the pores of the skin .. via sweat etc .. So all I can say is perhaps you have a fairly toxic condition and the body is trying to get rid of it in any way it can? Found this link ... http://www.mamapedia.com/article/daughter-tick-s-hair-smells-like-urine And some of it seems to indicate it could be related to kidney problems ... as I said, if the normal means for getting rid of toxins do not work, the body will compensate in some other way. So my inexpert analysis would be to rule out kidney issues ... suboptimal kidney function causing a toxic build up leading to tics ? Don't know if that's even possible ... it seems an odd symptom, but there is a reason for everything, I would certainly look into it a bit, at least.