Posts posted by faith
I do have Natural Calm, it's the flavorless kind; however, I found the taste off-putting and didn't think my daughter would tolerate it. She is very sensitive to tastes (and swears something is totally going to make her puke )
I looked at the d-hist reviews. It sounds exactly right for my daughter. Is there anywhere locally that it can be purchased, or do you find you always have to order it? Locally we have: Vitamin Shoppe, GNC, and a store called The Natural Grocer. I also have every normal drug-store (ie. cvs, walgreens, walmart).
Thanks so much for your input.
I'm sure you could find it at the Vitamin shoppe or the health food store...if they don't have it they could probably order it for you.
You could mix the Natural calm with a very small amount of boiled water, and then add some natural fruit juice, just a splash so she doesn't have to drink too much, I know my son doesn't like the sour taste either. If you could find capsule form, you could open the capsule and hide the powder in a tablespoon of apple sauce.
We give her 120mg of Attentive Child, which is Magnesium Aspartate. This dose was based on her size: she is a small 10 year old. (she only weighs about 54 pounds).
I did want to note that she has been off dairy for 9 days and she has shown some pretty obvious improvement. Her eczema has cleared and her tics have decreased. She still shows signs of nasal and eye allergies. We give her Nasalcrom for the nose and Alaway for the eyes and these both help a lot. They both wear off and have to be given twice daily. When those wear off she begins to tic more because her allergies start going again.
I would love to control her allergies better, but previous experience with allergy medications (zyrtec, claritin, nasonex, singulair) have had positive results for allergies but negative results for her tics. Ofcourse, I've never tried any of those when she was on a restricted diet (ie. non-dairy).
Has anyone had success with removing dairy and then been able to give an antihistamine with no ill effects?
If you feel the Attentive Child helps her, then by all means stick with it, however I would like to point out that sometimes things that have a good effect for attention, sometimes have negative effects on the tics. If this product contains magnesium in the form of aspartate, perhaps try a different form, as sometimes people find aspartate being more of an exitotoxin rather than a calming. so maybe try a product that is magnesium citrate or another form. avoid oxide as it is poorly absorbed. Also, it might help to up that dose a little, 120 mg. is pretty low, you could give 3 to 400 as long as it doesn't have an laxative effects.
Only suggestion I could give for the antihistamine is maybe try a more natural product, there is one called D-hist jr. that you could google, it is made of quercetin and some other supplements. you could experiment to see if it helps. I think the no dairy trial is a good one, and may very well help, but you'll have to experiment to see what effects the antihistamines have.
My son had some of the same tics for about two years. Some of things I believe helped are chiropractic adjustments weekly,accupunture,calm kids,omega w/D3,probiotics and good multi-vitamin.I also believe in no dye,dairy,high frutose,msg and artificial free diet. My son head tic was so bad two and half years ago....we rushed him to the ER. He has been 100% symptom free for the last 7 months. My heart aches for you because i know what a daily struggle it is...i hope it gets better for you.
how old is your boy now? tic free for seven months? you've said what you think helps,.do you think it was accumulative? how did it go, one day it just stopped, or got less and less? how much kids calm to you give?
how much magnesium do you give and what type? just wondering. you could try upping it a little.
I think my brain is shutting down! I thought I was doing so well to make a chart of all the new meds and supplements, get my gluten free cookbooks back out, and notify the school of some of the changes. Ryan's liver is not releasing any bile to digest his foods. He is not getting any of the benefit of the fats. We are supplementing his diet with OxBile to make up for his natural bile. Also, his liver enzymes are elevated.
My mother died from Hepatitis C seven years ago, so I know what end stage liver failure looks like. It is a horrible death. My mother and I were very close, I was the last of seven children, the baby. I freaked out yesterday because I thought of losing my son in the same way. I know we are a long way from death and I am probably over dramatizing, but I am just beside myself.
Ryan was tested for Hep C and tested negative. Thank the Lord. But he tested positive for so many other things that are hard on the liver like Epstein Barr virus, HHV1 and HHV4.
I guess I just needed to vent and ask for reassurance. Did anyone else have liver problems with their Lyme? Did it go away?
how did you find that your boy is not releasing bile? did you have any blood tests recently? does it show any problems with liver or you are just worrying?
could I ask what meds he is on presently? could you list?
but your child is being treated for lyme, right? you have stated that he has had some flairs of symptoms since, which you call herxing...how do you really know it is from that and not from being exposed to strep or even 'having it', (albeit showing no symptoms of it, which can apparently be possible in pandas).....??
great and thanks!
I'm shedding a few tears tonite too..I will be praying for all of us....
could we get an update on how your child is doing on the Progressive multi? just wondering. are you stil giving it? how are the vocals? and how are the mood/crying spells? can't think of why that
Also, just looking the ingredients, I was noting that even tho there is not a high amount of magnesium, those other 'green food supplements' are probably a source of magnesium as green vegetables are usually high in magnesium....so that may be a reason why this multi is working out well for your child. just a thought
I was looking at this as I've started playing around with magesium more lately, actualy trying out different forms and higher amounts. not having any great results, but trying to be patient, not expecting any immediate results. So being that I don't give any other vits at this time, I wonder if I should start (wondering if the reason the mag doesn't seem to help him so much is because I'mnot balancing with other vits, as this multi may be doing).....I don't usually like high dose vits for my son, I always think he doesn't do well on them, so I just keep them out. but wondering if it is a good idea to just give mag alone, I know that the Bonnie Grimaldi vits were formulated as even tho she thought magnesium was key, it needed to be balanced with other vits.
what kind of herxing is your child experiencing? is this just since the abx for lyme?
what did Dr. Cunningham say about the Igenex results?
telling her to "stop it" is not the answer. If anything, it can make it worse!
Children can have tics (which these sound like, vocal and motor tics) for a number of reasons, from having Tourette Syndrome, to having an infection (like strep) to having allergies to foods or things in the environment.
when it is associated with a compulsive drive (which seems is occurring when she describes it as being "told" to do these tics, then it may be a form of what is known as tourettic OCD (obsessive compulsive disorder merged with Tourette Syndrome)
there are other instances of compulsive or obsessive tics, seen in Aspergers Syndrome (high functioning autism spectrum) and also with kids who have chronic infections (again like strep, a condition known as PANDAS, or other microbes, known as PITANDs, which can also include Lyme Disease etc.
Some children may show these symptoms after vaccines, including flu vaccines, as well as an asortment of other "triggers"
So, as you can see, there are many things that can be causing these tics for this girl, but she is unlikely to be able to just "stop" doing them as they are likely neurological and not within her control! The stress of being told to control something happening beyond a child's control can in turn trigger even more of the tics. It would be like someone telling you not to blink. You can hold it for a bit but then you simply *have* to....same for a person with tics!
The parents should rather try to find out what is causing the tics so as to best treat them. If they or the child are not bothered by the tics, and if the child is not showing signs of illness and seems content, then you may have to actively try to not react to them yourselves, if you are able to ignore it and just enjoy having her around. But especially don't add to the problem by telling her to "stop it ", as it is more than likely that she simply cannot.
hope that gives a bit more perspective for you
our main page has a bit of info about tics and tourettes http://www.latitudes.org and also has a link to a very helpful book about natural ways to treat tics and tourettes
If you want to learn more about Tourette Syndrome, here is a good website http://www.tourettesyndrome.net
Thankyou for you reply
We only stoped telling her to stop kissing her teeth as people kepted looking at her like what a rude child
She has had a urine infection and then a chest infection in the past 2 months
As far as we know her food as not changed She dont live with us and we dont get told much from her mum/nan this problem was only brought up when we said we was worryed about her and they then said they know
Could this tics be caused by the infections ?
I just feel the need to point out that just because a child has any childhood 'infection' such as urinary or bronchial, etc. does NOT mean that these necessaryly 'cause' tics. I think its important for those seeking advice to undertand this is only a factor if one has an 'autoimmune' reaction or condidtion such as PANDAS (pediatric autoimmune neuropyschiatric disorder, associated with strep). Strep has been the one most studied, and some other bacterial infections are being investigated, but I do want to point out that just having one of these infections does NOT just cause tics in most kids. could it play a role? maybe. but it that is to be determined by your doctor and in context of the other symptoms and medical work up of your child. I just don't want people to think that any ordinary infection 'causes' tics...in most of the pediatric population, it does not. If it is playing a role, there is somehting more going on with the chld, and that needs to be investigated.
Dr.L. will talk with you and your dd for a while and taking family history, etc. When we saw her,I was used to talking with docs first before my son joined us, but she had him stay and asked him if he wanted to. Actually I had not really used the word 'tics' with him prior to that appt. last year, and she was the first to introduce that word to him. i wasn't totally comfortable, because I wanted to explain first, we had just called them habits or problems, it was just a word that stuck, I hadn't ever said tics. So just a heads up for that, .. he was fine with it and understood, and after that it kind of made it easier for us to just refer to them as tics. but I was nervous in the appt. because I had not been comfortable talking about this stuff in front of him, I didn't want to upset him and yes, make him think something was 'wrong' with him. But he knew we were seeing a doctor about this issue, as we have been to many other type docs before, so what we told him is that we are trying to find out if there is a reason that he has this and this doctor might be able to give us a certain type treatement and we just wanted to talk to her.
Ask all the questions you have and hear her answers, jot them down if you have to, have a pen and your folder of notes in front of you. she probably will ask your daughter some questions, maybe about how she feels about her tics, etc. You'll be right there the whole time and Dr. L. is a very professional normal type woman, nothing quirky about her, so I'm sure your dd will be comfortable.
There is the Washington Zoo nearby, so if you are staying overnight, you could spend the next day doing some site seeing, we did that and it helped to just incorporate the doc appt. with some family time. good luck!
I think you and I are in pretty much the same exact boat, symptom-wise and test results are very similar. I have investherigated Pandas all of last year have seen two of the top Pandas docs talked about on the forum and have tried the antibiotics (actually this was the second time and I was revisiting it and trying again due to some urging of pandas parents)... I have much of the same questions and concerns as you. We did try the augmentin and after that, the azith...i did not like the azith, I did feel he was worse off on that, so I did not continue. Some will say it takes being on abx for some time to see it working, but I personally do not see that as being so, one, because I would think abx should eradicate the infection if there was one, and if not, it is just there to prevent the next one...and even then, I see that kids are still getting strep after that, I hve seen reports of. so I just don't know. rememember too that abx can contribute to yeast and gut problems, thus possibly causing more and more food intolerances due to leaky gut, all of which can ALSO contribute to symptom increase. I think it is not at all a stretch to see that abx can be part of the problem. Now that said, IF the abx are definitely helping and are being used to eradicate the bacterial infection that is obviously and definitely causing exacerbation in these kids, than I beleive it is then warranted and the benefits outweigh the cost.
My advice is that if you are comfortable at the level of tics or ocd that your child has, I see no harm in trying out and employing other means to manage the symptoms. I think it should be said here that if your child is 'just simply tourettes'...that should be okay. I would hate to see someone plod along and shoot in the dark with the different pandas treatments that are not exactly benign if it is not definitvely pandas. I think someone needs to say this. it is okay if your child just has some tics or ocd, there ARE other ways to manage.
That all said....we have talked before...I do think it okay to do a trial of some abx, just to see. I personally think everyone should try it out just to see what the reaction is. I don't think it should take months to see a difference, I think if it going to help, a month would be enough to see an improvement. more if you like, but go with what the doctor says. If you are afraid of azith, understandable, that is actuallly one of the last abx they give, and I think Dr.T. gives it because usually some come to him after having already tried others and azith seems to be one of the strongest. So if I were in your shoes, and I WAS, I would try amoxycilin first for whatever time you are comfortable, a month if you like. The next would be augmentin, which is just amoxycilin with an additional ingredient called clav acid which I beleive helps it take effect better, you'll have to read up on that, I'm a little rusty there. But anyways, those two abx, I don't think cause too much of a problem,, these are the ones used when someone has strep or even bronchitis, so if your child was sick wtih something like that, its what they would give, and sometimes I think its just doc's preference of what abx to give. If you see any adverse reaction, you just stop giving it, and it should be okay.
sorry to write so much here and hope I'm not confusing you...but just because your child doesn't show concrete evidence of Pandas doesn't mean you have to dig to the center of the earth to find something to prove it, sometimes it just isn't there, and I think it should be okay for some of us parents to accept that our kids have tics and some ocd and maybe some other behavioral issues that may be managed in some other way There IS a such thing. This is not considered giving up, but looking at other angles and even if it is illness, there are other ways to manage some of this. I don't regret having traveled the road of Pandas, but I am personally not willing to keep on when there is just nothing there,..if something surfaces, I will be ready, but I just don't have a kid that gets strep, so what to do? pull it out of thin air? I don't have a need to call it something else, but I can assure everyone here and there that my eyes are WIDE open, I am looking at EVERYTHING, illness included.
Caryn...if you see this, do you have anything to add re the abx? thanks.
eljo, what are your child's tics presently? if you had to give a number from one to ten of the severity of your daughter's symptoms (all), what would you give. would you gauge it as mild, moderate or severe? I would say my son was mild until he started a couple years back with a more noticeable vocal tic and so I say he is moderate, but only because of the vocal.
So bottom line, I would try some abx and just see what happens.
My son has vocal tics, where its basicall a 'ahUH' type grunt or sometimes a higher pitched squealy thing.... does your child ever make any grunts or sounds when not speaking? what you describe sounds like my son, as when he is doing his vocals (which btw, are pretty frequent for him, quite noticeable)....and then he says something, he will sort of repeat the first word or a word that he is saying in tht same high pitched tone, ..its sort of a way to get the sound out by making it seem as tho he is just saying the word in a funny way, kind of a 'masking'.... like he'll say "oh Yea, and the Yea will go up in pitch....he's doing that to get out his sound. I know this becausue he's told me, as he got upset when I mentioned it and questioned him why he was doing that...
I know its hard not to worry about what course this will take, but I don't think it necessarily goes in a worse trajectory, it could very well resolve and not go any further.
thanks for posting on this.
What did you mean by when she rests her head, the tics cease? do you mean when she lies down?
I remember when several of us were persuing this theory and seeing Dr. Sims... We did wind up going to the appt, but I was not convinced it would help our child, since a couple others had gotten the device and it did not seem to help. In the office, the stick test didn't seem to prove my son's tics could stop, so I did not know if I should persue it, and ultimately did not. Really, the 'theory' makes a lot of sense to me too, altho I wish I could understand it much better.
But I am very interested in hearing from those who did, so thanks for the update. Do you think the jaw allignment has been corrected? why do you think things started going downhill? I guess I'm thinking if things were good in the current position of the jaw/skull etc.....does the losing of the teeth change that in any way? Also wondering how you get it to stay in that one great position, not sure if I'm explaining that right. Do you think this looks like natural waxing and waning in general or do you think it is directly because of the tmj issues? really hard to know. how old is your girl again?
For vocal tics, at least minor ones such as clucking, throat clearing and maybe a hmmm sound, I always think eliminating dairy and milk products could help with that, only thinking is because dairy causes mucous build up in the throat, and I once read that in the book "Is this Your Child" by Doris Rapp. her book ahs to do with foods and environmental being a possibility for symptoms of ADHD and behavioral problems., so you might want to look that book over if you can find it in the library.
could you do a trial of dairy free? its worth a shot. I have vocal as our primary tic for some years now, have not been able to fully do dairy free for my little guy, but I do feel if he has milk and too much ice cream, it does kick up. hard to know really since I've been dealing with this for some time.
how long have you been doing the bontech vits?
good to hear all that.
did you feel the clonodine did anything re the tics, or no? I did not think so....but I would take the weight gain....i got a 63 pound eleven year old.
Your confusion on what to try is definitely overwhelming, but yes, unfortunatley you will have to try and tackle it one or two at a time. whatever you can that seems reasonable, and then add on from there. for some, certain supplements may make a difference, and great that you did the allergy thing already, its just another something to look at. read as much as you can and just go from there. cleaning up the diet is a first good start. i've not had much success maintaining good diet, for the reason of my kid being so skinny all this time, and also some non-compliance due to age....but I can tell you this...since i have somewhat abandoned the dietary restrictions (not completely, but i am not diligent)....my son is probably at his worst....wether it is due to not sticking to a good diet and eliminating the candies and junk, don't really know...but i do know he was better when I was more diligent. So my advice is to start now with dietary for him, so he gets 'used' to this way of eating and won't necessarily rebel later on, that's what I kind of got. If i had known about this type thing when he was more like 5 years old, it probably would have been easier.....
just a couple things....you say you think the meds are not working, but being that you say the motor tics are away, you never know, it might be helping with that and you don't realize...maybe the vocal needs a tad longer? not sure, just wondering....I am not exactly an advocate of meds, but after a long road with TS symptoms (even after exploring Pandas and trying out some antibiotics to no avail)....i have had to resort to clonodine this past summer, due to a big wax on vocals. It did not help at all, only served to make my son drowsy and lose appetite, which he cannot afford. That said, I do think vocal tics seem to be the hardest to eradicate for some odd reason. Are you taking him off now, or still on the topo and resp?
So i am in the same boat as you with the huh huh in school...its pretty constant right now...altho my son is older (11) and has been dealing with this a while, so he can sometimes try to do it lower, and even try to hold it for a time, but it is not easy. I realize suppression is not necessarily a good thin, and I don't want him to do this at home, but sometimes in social situations, i think its okay to find a way to make it less obvious if at all possible. I don't think it wrong to make them aware of their social surroundings little by little, if only to serve for them to be aware and mindful of thier tics, if that makes any sense at all. .... that said, your boy is only 6, so i'm pretty sure kids at that age are not zero-ing in on his sounds, kids that age are kind of noisy and bouncing around so it shouldn't be too obvious. you will have to be adamant with his teacher that you are working on this, but that your son cannot help this right now and to please be patient while you figure out the best thing for him.
funny you mention the hypnotist thing, i was recently researching hypnotherapy...anyone here know much about this?
how long on the naltrexone?
If you think it is any of this supplementation, which do you think helped the most? do you mean you just started something new and it seemed to help the tics, or has this been a while? Is he still on antibiotics?
I'm not sure I understand what I'm reading about the myelin sheath? Is that more of the OCD part of TS?
the myelin sheath is i think the protective wall surrounding the nerves? i don't think it has to do with any symptom in particular, just that the nerve endings are damaged in some autoimmune disease, such as MS....so it is a thought that if this can be repaired, it can help in nervous system disfunction. hving said that, in the DAN community, it is thought TS is autoimmune in nature, so hence, trying to repair that is something they are working on. If you recall, I once talked of the diabetic drug called ACTOS, and that is being used off label for autism to do just that, repair the myelin sheath, and our DAN has prescribed this to us a couple times, i finally have him on it, and it seems okay, but it takes about a year for the reparation, so not sure at all where we stand or if it is doing anything. So with that, i don't know if thre is anything else that can help with this, but if the omega 3 or fish oils help, than i suppose that is a good thing.
(and wondering, who knows, maybe the process of 'repairing' causes the nerves to be stirred up a bit and this is what causes the increase in tics or symptoms with fish oils? who knows...)
About the krill oil, its been about a week here i guess, not seeing anything one way or another, we are still ticcing. i am tempted to stop, but he was ticcing before, so i guess i can't blame it on that. i'm going to keep going. how are things at your end?
I am a definite no on the flu shot, especially the mist (I think that is live? not sure)....but if a child has asthma, I can see where that might be a special circumstance and the risk of the flu might be worse, so you'll have to carefully weigh that with your doctor.
could i ask you more about the CBT? how does one go about finding this? and how does that help with TS exactly? thanks.
great to hear this alan.....
would you say it took about hte three weeks or did you see some waning before this? if you don't see anything adverse, then i would say that is success right there as some don't do well on fish oil, because of increased ticcing, so that is a very good thing. being able to give this to him is great, it does supposedly have anti-inflammatory effect and that is a good thing here. i owuld think three weeks enough to get in there and take some effect, yes.
I know alot use magnesium for tics, mostly in the form of citrate. I have read that the lactate form is better absorbed without giving a laxative effect. I'm trying it out for my son now...i actually thought the first week was good, but it did not sustain, so not sure if it had anything to do with the mag lactate. I have used Natural Calm in the past (citrate)....don't think i can say anything one way or another, but i know i can only give so much or he has a laxative effect, so not sure if it is absorbing good enough. i got to thinking maybe he just needs to absorb more?
anyone use it or have any further info?
"....struck out 8 players with his curve ball........so sweet to his sisters....."
well now you are just showin off CP!, lol.
oh how I'd love to report the same......
okay, i am giving the krill oil a try, three days now. we have vocals and some facial grimacing stuff going on, too early to tell, but i don't think i see anything adverse anyway. his sounds were kind of a high pitched shrill almsot exaggerated hiccup thingy, so i'm kind of gauging that. i still here it but see he makes more of a huh sound yesterday and today, so i'm not looking for overnight success, but i am going to wait it out and see what happens here. even if i have a day or two of good type behavior, i don't put much to it, i want to see sustaining. i don't think i saw any direct increase like i thought with regular fish oil, so at least thats good.
thanks cp, hopefully we'll both see something good from this. Bonnie, did you say you will try too? Let us know.
how are things for your boy BigAl?
Whats better DHA/EPA
in Tourette Syndrome and Tics
how are things going with your girl? (
From what I've followed back a ways, there was discussion that the EPA should be higher for ticcers, that's what seemed to be the consensus. you can look back on some old threads. so loks like you're on the right track. I know they use higher dha for adhd type, and that seems to maybe not be so good for the ticcers. so hopefully higher EPA will be a better formula. I don't give it and havn't for a long time, just don't want to take the chance and then even if it is not because of that, I will think it is, lol!
let us know how it goes if you use it.
(not spending too much time on the forums lately, but hello and best regards to all my old friends that I havn't talked to in a while... I do still think of you all..... )