faith

Kim, Thanks for that interesting info--I want to read up a little more to understand better, it takes me a little while to absorb Carolyn, Thanks for that reply, that does give me a lot more info than I had. That's an interesting site--is that connected to the Dr. Robbins that you see? It mentions something about a forthcoming book on the topic of TS and environment/allergy connection? -do you know of it? Also, what is the Capital Hill trip? Is that something you do for TS awareness? Very impressive. Hope you are feeling better -- maybe all the cherry blossoms in bloom? Charlie, (I mean C.P.) Oh yes, I often think, if we were all in the same room, what a cocktail party that would be! Thanks for the laugh... Faith

Kim, The allergy testing we did was called "Serial End Point Therapy", and here is the site. Funny, but when trying to find info on how it works, the only site I could find on it was the one from our dan docs practice. I can't figure out if this is the same way other environmental allergy testing is done. What, did these doctors invent it? Well, if it helps any, here it is. http://www.autismny.com/allergy.htm If someone has the usual respiratory type allergy symptoms, I guess then it would be obvious if the treatment was working, but my son never showed that that I am aware of. Faith

I wanted to ask what type test this was--like what type things it measured and by what means, blood, stool, etc.? And what type of doctor ordered these? And C.P. I going to ask you too, what exact kind of tests you all did and from who, since you've mentioned you are following a program to correct some things too. I ask, because the blood tests we used were just the common ones done by pediatrician and dan doc, but they didn't have all these vits and mineral type things on them, just the B12 and folic acid. Were they done with the intent of finding deficiencies? It sounds really comprehensive. itsme- was your son like that before in school (the spacey)? or the teacher just noticing this recently? Maybe some supplement he's taking that's having that effect? How long on Bonnie's vits, and are you at the full dose yet? You may need to cut back. I don't know much about that sigA you mentioned, but it probably just sort of ties into the antibodies not being adequate? That kind of goes hand in hand with imbalanced gut flora, impaired immunity, etc. Thanks Faith

Can those of you who are using allergen neutralization treatments, wether it be shots or nasal spray--I'm just trying to understand how this exactly works. I mean I understand what the premise is--that the allergen remedy is a dilution of the things the person is allergic to? When my son had his environmental allergy testing, he was moderate to mold, cat and dustmite. We were given a nasal spray that I guess has some kind of dilution of the allergens and so I thing that is supposed to build up some kind of immunity? Now the little problem I have is that I'm worried that if someone is showing any kind of allergy to something, then is the fact that the treatment contains some of the allergen in its solution--isn't that like getting exposed to the allergen? Could someone get worse, or do you always get better? I don't know why, but I'm feeling apprehensive about continuing it. I did use it for him in November, December, and January, but I have been a little lax on it last couple of months. With all the references to Spring allergies, I renewed it a couple of weeks ago and started to give it to him again. But now that he is doing better in the tic department right now, I'm wondering what to do. I guess I am imagining that something will start up again if I start giving it to him regularly again. I know it sounds a little stupid. His vocal is much better, kind of sporadic and I am noticing a subtle like eyebrow raise. Am I crazy to think that the allergy treatment could trigger ticcing? If some of you could explain the premise of the allergy treatment a little better for me, I'd really appreciate it. I'm not talking about antihistamines, just the neutralizaion treatments. Am I just being paranoid? Thanks Faith

C.P. and others, I had this saved on my favorites list I think when trying to figure out what and if my son had some sensory issues.............thought you might like to peruse this site since it mentions that "gut being the second brain" ..........it touches on some subjects being discussed here..... http://www.spdbayarea.org/nutrition_and_SPD.htm Faith

Kim, Do you think using soymilk at any time during childhood could have the same effects as described in all that above, not just in infancy via soy formulas? I'm just wondering now. As I said, my son was not on soy formula, but last year about this time I took him off dairy for a time just on a hunch of it contributing to his vocal at that time and started using soy milk. Things improved for a time until end of summer the vocal started again. I don't know, maybe the soy wasn't good for him after all and over time (about 6 months of use) it reached its saturation point? I'm just totally speculating here, based on the above reading. Its a little comprehensive, and I have to admit a little hard to grasp totally, but I'm trying. I did stop using soymilk and switched to rice milk, which we have been using now for about 7-8 months. So is the bottom line that soy is a trouble maker? Faith

I think I'd just be afraid that treating with antibiotics of any kind would be good in short term, and then what about after the course is over? That's when I'd be afraid the tics would come back full force? Has anyone who's gone the route of using the antibiotics for the tics ever been able to stop the antibiotic and then all is okay, at least until next bout? I think maybe, colleenrn treats her daughter that way (on and off antibiotic/azith only when ill?) colleenrn? I just wonder if its like what came first, the chicken or the egg? (The strep infection or the antibiotics) Faith

hello azlsmom, that is interesting what you describe. May I be nosey and ask what your child's other learning disability is? Sometimes the tics may just be a comorbid issue, like some kids with ADHD have nervous tics as a side issue, I don't know if it is categorized as tourettes? I think they call it stimming? Some sort of behavior they find comforting (self stimulation). You should definitely explore that allergy connection. If it is as you say with the spring, summer--possibly something bothering him at that time of year. I get what you're saying-you think the throat clear/cough is a tic, not allergy--that may be, BUT, maybe its possible the tic is just triggered by allergy, (not the cough being the reaction, but the cough being a TIC that's triggered). Don't know if I'm explaining that correctly.... If your son is asking if it could be allergies, I find that interesting. Maybe he feels something is making him feel like doing that at that time of year. I think having some allergy testing by an environmental or DAN doctor is worth exploring. (I think that is covered by insurance.) Faith

Now you are all just scaring me. My son is a little guy, and has weighed like 40-43 pounds for about two years (8 yrs. old) Is this normal? He really never gains any kind of significant weight. Height is about 47 inches. Oh, I pray he doesn't get a big growth and the problems with it.....I mean I want him to gain and grow, but I hope that doesn't start more tics. P.S. he's doing nicely presently. Vocal is way spread apart. We were with my mother past weekend and if she didn't notice anything--that's a good thing! Faith

Kim, You can add my guy to the list of limited/picky eaters. I had this problem with him forever. It was very stressful, I'm the mom who's following the kid around with a forkful of food. BUT, he was never on soy formula. We used the regular similac and then at around one year and change switched to whole milk. So I'm not sure if you were looking for the soy connection, but if so, my son never had soy as infant. (we use rice milk now.) Now that we have cut way back on commercial junk food, he is eating way better. I notice, over time, I don't have to fight with him to eat anymore. Itsme -- Forgive me, I'm just a tad confused. But I got the impression from previous conversation that "itsme" was the dad posting? I'm assuming, Pam, you are the mom and you are both posting on same username? Faith

Hi Kim, I think what they are saying here does have some merit. Sore throats and strep do resolve on their own and I personally feel the risk of r. fever is minimal. BUT, yea, I do understand that with this pandas related issue, well, that's a separate issue and should be dealt with accordingly. Who knows, maybe giving out antibiotics too easily could even be a factor for some here. Does anyone here dealing with the strep connection know if their child had antibiotics for anything BEFORE the tic emerged as an issue? Maybe too many antibiotics too soon in a child's life causes some unforseen problems...maybe weakening the immune system or antibody reactions in the future. One other thing I feel the need to put out there, and I'm no expert, but I'm just wondering if anyone newly dealing with tics has a misunderstanding about the PANDAS. In that last thread about azithro that kkver just posted, here is something that stands out for me....and its a long article so much of it could go over someone's head. "The acronym PANDAS (Pediatric autoimune neuropsychiatric disorder associated with streptoccocal infection) describes a subgroup of children with OCD and/or tic disorder that experience symptoms of EXACERBATION following strep infections. We HYPOTHESIZE that the prevention of strept infection among children in PANDAS subgroup would decrease symptom exacerbation. I think Ronna has tried to express this in her replies, too. Now, what I mean to point out is that I'm wondering if some have the misconception that PANDAS is an illness in and of itself. What I believe the premise to be is that ocd or tic disorder does exist on some level (maybe even latent), however the introduction of strep infection (and all that comes with it, i.e. antibodies attacking, etc.) is just something that well, yea, EXACERBATES, or brings it out, more suddenly and distinctively, as opposed to subtely. It's the infection that causes the problems, not the disorder itself. I'm not debating the way to TREAT it, just that I'm somehow getting the impression that some think it is a totally separate issue and is a kind of disease in and of itself. I'm betting there are many people out there who have these high titers, but do not have any symptoms to show for it, because tics or ocd are not an issue for them... but then, maybe something else is. So, my point is just to point that out....and the article that Kim posted is not really off the wall, it makes sense. But the issue concerning strep as a factor in some children regarding their tic disorder or ocd, well that is something different that, I agree, has to be dealt with separately. Now, my son has had those titers tested twice, and seems not to be an issue, HOWEVER, I am not necessarily dismissing all I know about that connection. As I mentioned before, he had an exacerbation once last year at this time, and coincidentally had a strep throat infection and was treated with antibiotics, and lo and behold, his symptoms did subside right away. So, I'm always on my guard for that, even tho we had the tests. If that ever happens again, I'll get those antibiotics one way or another, even if I have to get Anna Nicole Smith's doctor to prescribe them for me! Don't know if I made any sense, but there it is. Faith

kkver (and others) re pandas connection I can't give you any answers about how long later to test, but I am guessing any time, since if one has infection, then that's a good a time as any. BUT, I know I keep mentioning this to anyone looking to do titers testing, and hate to keep on, but I really think anyone dealing with this possibility must look for a specialist, not just a regular pediatrition. I think some docs possibly in major cities may know something about this, but not all. If you see that is the case, then you should get out the yellow pages and make some calls, namely an Infectious Disease doctor. I can't see anyone having to convince their doctor of something--you should be talking to someone who knows. Please forgive me for this frank advice, but it is paining and frustrating enough, I know, and we need to make it less so. I agree, doctors should be aware of things like this, but if they are not, well, they need to refer you to someone who is. Faith

Mountaineer, hello and welcom, Just out of curiousity, since you never posted before, how did you come to know and implement natural treatment for ts? Do you do this on your own knowledge or see a integrative doctor? Any things other than going organic and reducing stress that you could share with us would be helpful too. Thanks Faith

Hi everyone, I know we've probably touched on this before, but we can beat a dead horse, can't we? My son (and myself) had virus last two days, he woke up and after breakfast he said he wanted to stay home as his stomach was feeling sick, and sure enough he spent all day laying in bed and threw up several times, even after only drinking a little water. He also has a stuffy nose, but no sore throat. He ate only breakfast and basically nothing else all day, and I didn't bother with usual supplements (and didn't give any medicine). Now, funny, he was doing so well, especially last few weeks, all his usual symptoms to a bare minimum. And even the day of ill, I heard no vocals, since I was laying with him mostly all day. Then, next day (yesterday) he felt better and it seemed to be over, but i kept him home anyway since he did have slight fever previous nite (100.). Now I shouldn't be surprised that his vocal is more apparent yesterday and today, but I think its interesting that he was good right before being sick and the day of being sick. Is this something I don't understand too good? Do you think his immune system is depressed now, even though he is better? Any advice? Just when things seemed so much better................. Thanks Faith

JMT, hello and welcome. May I ask how long your daughter has had this chronic tic? I assume by chronic tic, you mean the same tic always? Have you started the klonopin (or is it clonodine?). Has she ever had any other symptoms? I am in NY also. If you go into any health food store, they usually have some literature up front. If they have a a little directory called "Natural Pages", that is a good place to start. Otherwise follow the link that Chemar posted, and it will suggest sites to look up. Since you seem at the very beginning of research, have you looked into the book "Tics and Tourettes" in the above topic? You could probably find this at one of your libraries. Faith

Hi Patty, I think I can give you a little about this. I'm not familiar with the brand "Smart Water", but did look it up and I think it may be the type of thing we are using for my son that was recommended by our naturopath. I don't have that filter machine, but we just get our jugs filled up in her office. It's called the Ionizer Plus Water Electrolyzer. I'll just quote a couple things and you decide if its the same type thing: "How can the ionizer plus help? The solution is to return the body to a state of balance where it can heal itself of the other problems. The IP, through a process of electrolysis, concentrates minerals (calcium, magnesium, potassium) already present in your water. In process of doing so, the minerals get split into the highly bioavailable ionic form and rthe resulting water is alkaline (has a pH greater than 7.0)......Not only does this water help fight and reverse on-going acidity, but it also is a rich source of the very minerals robbed by acitdity in the past." http://www.hightechhealth.com/html/ionizer_main.htm ... (yay i did it - thanks cheri!) Now, we use this, as I've mentioned before, my son had a little higher level than desired acidity noted on a blood chem panel. So this is one of the things we are doing to balance that out. (we also add some other thing called pleo drops, one is lactic acid and one is citric acid.) I believe the idea is that slightly alkaline state is best, as disease has a hard time thriving in that environment. That book "Natural Cures" by K. Trudeau mentions this. I think it is a very good thing to use, but if you are just looking at it for the extra magnesium, I think the magnesium supps are alot cheaper! As far as steamed distilled water, I've always read in health books in the past for that to be the recommended purest water to drink over tap and bottled spring water, and I used to buy it in the gallon containers, but am not aware if that view has changed. Faith

Okay, I think I know what I'm going to do. Tell me if this sounds good. I'm going to make a call back to the school psychologist thanking her for the meeting and her input, and will tell her I'm going to send a letter requesting any considerations, i.e. type of teacher, etc., as she suggested I could do (although didn't confirm it would be definite), and any other suggestions she may have. I'll be comfortable with this as she seemed a lovely girl. In that letter, I'm going to refer to the meeting and the suggestions of the psych and express my hope that these will be honored. I am also going to subtley allude to the fact that I am going to see how things go and if my son's issue becomes problematic, then I will go forth and request formal diagnosis (and testing if necessary) with the intention of obtaining the 504 plan for him. I think that will put at least the paddle in my hand for now, and hopefully at least the school (principal) will know I am aware of my options. This way, I will have time to see how things go for him for now, but have the bases covered should I decide it is the necessary way to go for next year. Does this take a long time to put in place, or is it a fairly quick procedure? C.P. yes, this is a public school, and I wish I could say the same thing about teachers being afraid of the parents, but I think its way the opposite--principal always backs up the teachers. I get the impression they want to keep school in the top percentage academically, and don't like it when any student does not fit the ideal--seems like they bug every other parent about the child's shortcomings. Cheri and Andy - thanks, tho may I ask what plan your kids have, the IEP or 504? And how is everything presently going? Are tics much better now? Thanks again Faith

Thanks so much for that advice guys. Now you have got me thinking and wondering. I'm getting the feeling you are thinking it is a good idea to maybe push the envelope with getting the 504? My worry was always that they were going to insist on a whole psych testing and then he'd have all these labels on him. Forgive me for putting it that way, its just I think we are all frightened about how others will perceive our children, in any instance. I know that the tics are a definite issue, although to date it has not been any kind of problem issue for him or the class. The impression I got was that they wanted to cover the base of implementing the first step of when a teacher is concerned about a health or learning issue for a student, and having the meeting to see what page we were all on concerning it. That was accomplished, for they know I am aware and what I am doing to treat it. And I know they are aware of it. When all was said and done, the psych stated that the teacher didn't feel his "learning" was impacted, for he does seem to hold his own academically, although she agrees he could probably be capable of so much more if he didn't have his lollygagging issue. Now is that "just him" or IS it a comorbid issue, such as OCD,SID or ADD tendency? (I am just wondering-- they probably did too--but for now did not insist on testing (and I was not against it, I asked several times if they thought we should do that). Now I am wondering if possibly the principal was made aware of this forthcoming meeting and advised them on how to handle that aspect of it. The school psychologist and the teacher seemed totally on my son's side, but I do not know this principal (a female) well, but I'm aware that some parents are not total fans (she admonished me once for peeking in the window of my son's first grade class while I was up at the school to attend one of the PTA meetings ). I have been feeling he has been doing so much better, the different tics he has had this school year are definitley on the minimal side as far as I can tell, however the teacher stated during our meeting that the previous day he "exploded" (her words). I was very surprised--is it possible for him to do that in school at a certain time, but I don't see any evidence of that at home? Does anyone feel she may have exagerated for the record? I kind of did, I mean, I feel either he's ticcing alot or not. I don't usually see bouts of heavy and then better the rest of day. Maybe he does get ticcy when she's giving instructions or talking sternly to him, and she perceives that as an explosion. (Remember what we were saying on another thread, about it depending on what one considers "severe" (as in tics)...) So far, I was going to devise a letter stating the type of teacher I feel would be suitable for him due to his tic disorder, and was pondering about asking for him to be paired with a couple of his current buddies (as well as as many from his previous class as possible, since they are already "used" to him, along with maybe not being in a class with a so-so friend of his who he does not always see eye to eye with. Are you guys feeling they might like to have the ball on this so they can do things "their" way if they want? It really is a very good school, however, I do get the impression that the consensus among parents is that they are not very what we call "parent friendly". They kind of like the parents to offer their services and money, and then leave the rest to them. I always ask the Lord to "show me the way", so I think I have to pay attention to what is before me right now. If this is the path I should take, I'm thinking maybe I should listen to that "squeaky wheel"............................................... I just don't even know how I would go about this, so any directions for this zombie would be appreciated. Thank you all so much for your caring, it means the world, and this advice is also great for others who may have to go down this route too. Faith P.S. I remember a while back, there was a topic post about 504 being approved for TS, I think, but couldn't seem to find it? I think it may have been Chemar's post? I'd like to peruse that.

Thank you Cheri, my son and husband are freeeeeeked by this! We caught the mom back in the nest around 7:30 p.m. Sat nite. My son doesn't want to close the screen! And I'm having fun cause I just downed a cocktail before we go out to dinner! Faith P.S. Funny, do you see the sybolism? Momma protecting her baby chicks...that's us!

Hi all, Well I had that meeting with the school this morning. I only teared up a little at the beginning . I feel alot better about it now. It wasn't so bad, the school psychologist was very nice. I didn't know what to expect, but I think they just wanted to have this meeting to discuss what his issues were and I guess to make sure we were all on the same page, as she put it, about everything. We talked about the tics, and pondered about some comorbid issues he may have (I questioned a little OCD tendencies and a little sensory issues). So, in a nutshell, the teacher didn't feel he needed to be tested for anything right now, since his tics didn't seem to be impacting his learning, and we wouldn't go into talking about a formal 504 plan right now, but we would try some strategies for him such as checklists right now, to help keep him on task. And surprise --she did think that for next school year, that due to the tic issue, I could request certain accomodations, even without the 504, like the type of teacher that would be suitable for him, preferential seating (which teacher does now) and I suppose little things that would make it easier for him, (and the teachers). So I am grateful that they seemed open to that. I just hope they follow through with it when time comes. What I decided to give them was a letter from our naturopath basically stating that my son was previously diagnosed with a mild tic disorder and was currently under her care. I also copied pages explaining what naturopathic medicine is and what type of credentials and education naturopathic doctors have, and also one on how naturopaths are lobbying in Washington to be licensed. So I think I got my point across that I was aware of my son's tics and am doing what I can to manage it without having to resort to medications. I think the psychologist had heard of Lattitudes website. Oh yea, I copied that page where Sheila introduces the Tics and Tourettes book and what it contains to show her where I got alot of info. Now they know I am no chump! So, I'm thinking now that it's "out there", its a little like a monkey off my back. I pray this never gets any worse than it is right now, but I'm thankful that they really did seem to want to do what they could to help. So thanks again for all your advice and support, it really helped get me through this part. Faith

Gina, Last you posted you were going to add back B6 and B1--how is that working out? Any improvement with your son? Have things gotten a little better? Faith

Re: Natural Calm Oh, I just posted about this on the other thread, but I'll do it here too, since you are all talking about this product. I mentioned that today i found Peter Gillham's "Natural Calm, PLUS Calcium. Same type of thing you dissolve in hot water. Thought some of you might like that since it has the calcium built in. It says 2tsp. contains: Magnesium (citrate and gluconate) 300 mg. Calcium 200 mg. Potassium 99 mg. Vitamin C 250 mg. Vit D3 100 IU. Boron 500 mcg. I suppose its available on the order site too. So maybe good for those struggling with the calcium issue. And it says on the label "3 parts mag to 2 parts cal which will prevent a surplus of calcium robbing the body's vital mag supply and avoid the symptoms associated with depleted levels of magnesium" So I think the idea is not to get too much calcium with it, because calcium depletes mag in the body? Yeesh,...am I smarter than a 5th grader yet? .... (It's a new show) (P.S. I dissolve the tsp. in smallest amount of boil water in a cup and then add a little fruit juice. Best to mke the drink as small as possible (like a shot glass) so they can just down it fast and not keep sipping it if they don't like it.) Oh, and thanks Dr. C.P. -- that is good observation. Possibly something to that. The label on the above mentions "includes boron, pottassium and vit D for better absorbtion". I suppose that goes for the vit C too. Faith

Re: Natural Calm... Patty, you are ahead of me! I found today in a small health food store Peter Gillham's "Natural Calm, Plus Calcium". It says 300 mg. magnesium, calcium 200 mg., Potassium 99 mg., Vitamin C 250 mg., Vit D3 100IU and Boron 500 mcg.........First time I came accross this mag/cal in combo powder form to dissolve in hot water. Is this same product you are referring to? I just mention it as some are struggling to find which calcium to put with the magnesium. As I've mentioned before, I like this product called Super Mag which also has a little vit C in it too like the kids calm, but thought this one might be good to try too since it has the calcium added. (Pricey too, at $21.95 for 6 oz. cannister.) Just to make sure, why were a couple of you saying you thought the vit C was increasing tics in the previous posts? Any confirmations, or just suspicions? I don't give extra vit c, just what is in that magnesium drink. Faith

Hi all, Now I am curious again, has anyone used the adult Natural Calm, and NOT felt it was beneficial? I ask since you all are talking about the kids calm which includes vit C in the formula, and the mom using the carnitine who mentioned something about using vit C along with that too. I havn't used the kids calm, but do have the regular Natural Calm (doesn't have vit C in it). Now I have given my son this, but I was always thinking this other brand that I usually use seemed more beneficial to him--I've mentioned it before called Super Mag. And IT contains 200 mg. of Vit C. SO, I think that's interesting, maybe something to the combination, don't know? Maybe vit C helps it absorb better, wonder why its in there anyway? Faith

Hello Dedee, I'm no yeast expert, but I think I have a few suggestions. When you say your daughter has yeast, the way you describe, are you referring to gut yeast or vaginal yeast infection due to the antibiotics? If it is the latter, the obvious is to give lots of yogurt if she likes that (the kind with live cultures). As far as giving the probiotic in powder form, the easier way is to open capsule onto a spoonful of apple sauce and hide it in there. That's how I give my son capsule form supplements when he doesn't want to swallow it. Then wash down with any drink. Another thing (again if it is yeast infection type thing) I remember when I have had that it was usually due to that area being too alkaline (for me), so of course I used a feminine product with vinegar and water , but you can't do that so I would just add some white vinegar to the bath water, maybe a half cup. It's diluted, so it won't burn. Now that's just my experience, but I think it can't hurt. The idea is to have the proper PH balance in the vag environment. IF that's what we're talking about. If not, sorry -- but the yogurt and the way to give the probiotic still goes. Faith