faith
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eeeeh!
Hi Carolyn,
that is alot to swallow. For all the knowledge I have about supplements, I hardly ever take them cause I hate swallowing them too, something about the aftertaste and feeling it go down into my stomach, especially the bcomplex. But like a robot, I religously dole it out to my son and he's real great about it, but the capsules I empty into a little juice and the minerals are liquid drops also put in juice. The only tablets he swallows are the B's and they are very small.
It seems not much you can do if you need all this. Maybe the ones that are in capsule form could be opened in a small shot glass together and then just add your favorite juice. Or maybe do ten at breakfast, ten at lunch, ten at dinner, and ten before bed just to break it up a bit. For my son, I'll give a couple supps at breakfast, than something at supper, and the magnesium right before bed in a little juice. He'd probably get annoyed if it was all at once, too.
Hope all is good otherwise,
Faith
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Hi Patty,
Interesting about the filling. Yes, she should have asked about that, I remember ours did.
I don't believe it caused any increase, I was worried about that too, and did my homework (about the DMSA) before we did the challenge (the naturo thought some actually felt better after the challenge test). If you do wind up doing that, has she started mineralizing him? We still take an aray of minerals because I believe that draws out minerals along with the metals, so that may be important.
How is your son doing presently? If all is well, I can see not rocking the boat. What treatment will the naturo use after the challenge? We don't use the DMSA to pull the metals (he showed lead and mercury coming out more than the others). We use a natural product called Metal-Free (not cheap!) She opted for a slow, gentle pull for him. Interestingly, when I updated our DAN doctor on what we were doing with our naturo, his opinion of the Metal-Free was that it did not work. However, I feel its best for us, I don't want to use the DMSA on him--if he was autistic, maybe more intervention would be needed, but with his level of tics, I'm comfortable with it. Although I feel the other things we have done have been more instrumental for him, mainly the dietary interventions.
Faith
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Hi mblack,
The DAN stands for (Defeat Autism Now) -- it is a doctor that has gone on to explore and find the reasons for autism, and many of these type tests and treatments, like supplementing, elimination diets, allergy and metals testing seems to be the same type things that may be beneficial for TS, as it is believed to be on the same spectrum. The environmental doctor is fine, I'm glad you were able to find one, I believe they do the same type things, and are probably allergists who specialize in environmental allergies (our DAN doctor is an allergest and I did find him from that aaem list too, I believe.) That is good, he should be able to do all the testing necessary. Just wondering how they bill for that, if it is covered by insurance. The allergy testing we had was covered, but we did the metals testing through our naturopathic doctor and it was out of pocket, it was a urine test that is done with at home collection after taking DMSA, a med which is supposed to draw out the metals and then they test the urine. Have you had any bloodwork done by that doctor? That could be useful too. You could also ask if they do a food sensitivity test, but I believe that will be an out of pocket cost. As far as deficiency testing, we have not had that, but others here have, so if you need that, someone could tell you those names, not sure myself. How did you like this doctor so far? Did he give an idea of what type of things he believed might help or uncover something?
Faith
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hermom,
what you are doing is very good, yes it is painful, but you are on the right path and know it will get easier. The reading is exhausting, but necessary to understand and absorb all the possibilities. It will get easier once you find something that resonates with your child, in other words "what ails him".
Yes, it must be hard with the referral thing, but if you could convince a doctor to get you to see an infectious disease doctor or an allergist who is also a DAN doctor, they could give those tests (the strep titers) and think they would be covered. I did it through both and it was covered, (but I can go to any doctor, don't need the referral). Maybe you could convince the doctor that he is having some symptoms of allergies and ask to see an allergist (who is an environmental or DAN doctor?). If you live in a small city, it will be hard to locate, but if near any big cities, that is where to look. If worst comes to worst, and push to shove, maybe you could just pay out of pocket for the viist. I know its hard, but we do this with our natural doctor, none of it is covered. But when I was at my lowest, I didn't care how much I spent, we had to do something. So maybe you could justify any costs by thinking how well worth it it will be if they could find some answers for you. Keep looking and have faith, I know God will lead you to the right place. Many if not all of us here have walked the same path.....
God Bless
Faith
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Thanks Jeff, it helps to know what has been working for others on a long term basis, and your observances with the artificial stuff is really helpful. It just boosts my confidence that this is not just all a coincidence.
I think after a few days, I think the vocal is diminishing, he seems to hardly do it all when others are around during the day now (I really thought he was that last few days after the ice), but I will hear him let some out at night alone in his room. And yes, I did see that the Edy's cherry flavor uses the red#40, so now I will justy get the natural grape.
Its hard to be so observant, but necessary, because I could see where something could be missed and it would be easy to just throw up your arms and say, "oh, this is not working".
thanks
Faith
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Now that you mention that, Jeff, I think (or bet) that eliminating the high fructose corn syrup (and whatever else) has probably been beneficial for my son in terms of high irritability and mini melt downs when he didn't get his way. I havn't totally focused on that since I was overwhelmed with his tics at the time, but again, now that I am looking back, I think he seems to not have those type episodes anymore--guess I was chalking it up to getting a little older. But other than the tics (which are pretty well stabalized right now, thank God), he seems to still have fussy habits that seem to do with sensory issues that drive me crazy (like being fussy about what he wears and just set in "his" usual way of doing things), so if anyone has any insight on what could help that, it would be welcome!
Mary, also I mentioned on other posts that inositol is supposed to be a supplement that could help with anxiety, and our naturopath has given that to us to further help with anxiety, but I have been experimenting and put it on the back burner for now since things are pretty good, and I get nervous if I see any extra tics, then I think its from that. I'll keep you posted if I try it soon. Also, massage therapy could be helpful if you wanted to try that, maybe you could find a local therapist who deals with children, or a chiro who does cranial massage. I havn't done either, but it is something you could explore if you think you need something extra.
Faith
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So glad to hear things are settling for your son Mike, and thanks for the update. Do you feel anything besides the antibiotics were beneficial for him, and are you doing anything to keep up his immune system?
hermom, just wondering, not clear if your daughter was given antibiotics for the strep? if so, did any tic symptoms diminish? What else are you trying for her? The neurologist may just give you the basics, please don't be discouraged any further if you do not get anything useful there. Are you trying any supplements or diet restrictions?
Thanks
Faith
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bmom,
Being that he was doing well for a while, just curious, have you relaxed on some of the precautions, (as you said, he was playing games again). It could be just a little too much for now and time to cut back on things (or eliminate totally, whatever the issues were), ie. games, diet, maybe up the magnesium supp a little. When I see a little blink starting, I give a little B1 with the magnesium for few days.
I might notice this at night while watching tv before bed, and I think some mom's notice a little eye twitching when the kids are tired--is he staying up much later than usual being that it is summer now?
I also think maybe you could have an opthomology check up, they can tell if there is some sort of eye allergy going on. I have a friend who's son was blinking during certain times of the year (years ago) and the opthomology exam determined an eye allergy and gave drops, he seemed to be fine after that, I don't think he ever had any other issues.
Faith
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Hi mblack,
sorry you are so stressed about all this. I totally understand and have been there too. I really think you will get a handle on this, you've done so much work already, please don't give up.
I've read your previous posts about the food allergies. Are these true food "allergies" or food intolerances or sensitivities? Because I havn't heard of food sensitivities being treated by shots, only true food allergies, so I'd be interested to know what kind of test this was. Have you eliminated at least the foods that showed the most allergic response? Was it that type of test? For instance, does it state "high", "moderate" and "mild" or something like that? I see it is a long list, and that may be why your son is having multiple tics at one time, I'm thinking there are several things there that are a real problem for him. Perhaps you could eliminate four things at a time for two weeks, see where you stand, and if no improvement, try four other things for two weeks, and so on until you seem to see an improvement.
Have you at least seen a little improvement, or at least a decline, such as how frequent he does the tics, or the intensity of it? That could be a clue that your are on the right track, I would think. I have noticed when we eliminated the "high" intolerances (for us it was corn, yeast and flax) after about two weeks I saw a decline and little by little the tic got less and less until it was about 90% gone. Now we are still dealing with a vocal, but that is not as prominent as once was, but are still working on that. Have you taken some of the suggestions that Caryn posted? she covered a lot of good points. I know this can be terribly difficult, but something you have to cover, just to be sure. I think by eating the cleanest diet he can, can only be a good thing in the long run.
Have you done any bloodwork on him, maybe the environmental doctor could do a complete bloodwork on him just to see if anything else is lurking. As far as heavy metals, we have done the urine challenge test, but this is only done by a DAN doctor, naturopath, or maybe the environmental doctor--you will have to inquire about that.........Yes, there may be something you are missing, be it some food ingredient that is his nemesis, or some other culprit, but you will have to dig in and find it, and I'm sure that you will. I know this is hard and will take a little time. We are all here to help, so keep asking and answering, I know things will get better soon.
God Bless
Faith
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Mom and Dad,
The part about the birthday parties rang a bell for me. You'd be surprised what junk is disguised in what you think is "food". Anyway, you said "he didn't have anything he doesn't normally eat", but having ALOT of stuff all at once could be a problem--like a little of this and a little of that adds up to alot of @#$%.! Even pizza could be a problem if he has a sensitivity to wheat or dairy. You may have to tighten up a little more to see some real results, not just the obvious candy and cakes. Please keep us posted, I'd be interested to know how he does.
Jeff,
Just curious, I know you are very well versed in the artificial stuff. I'm feel my son's vocal is getting a little more prominent than usual, and the day I felt that way I know I allowed a "red" ice stick at his recreation camp (he also said he had 5 pcs. of gum and smarties.). Do you think that could cause this problem and last for days (its been three so far)? Usually I give him Edy's fruit ices at home. .................Do your girls experience tics at times, but then subside pretty quickly after tightening up again? I know you have mentioned in the past that things have been well for about five years now. I feel my son is doing quite well, but this vocal is sticking around the most. I kind of felt he was winding down on it, but feel like he's doing alot more around the house (its like a fake loud laugh). What do you think about the "red" ice?
Thanks
Faith
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Thanks for that Janey,
Very interesting that you did not really know about natural treatments, but you did great in observing the improvement after taking away the gameboy and such--that is certainly part of it. I always like to get an idea of our kids' history with tics to see all the comparisons and where it all goes from here, if you know what I mean.
Since you seem to have really observed a definite anxiety problem with your child, the only thing I can suggest is finding some supplement or herbal treatment that works on calming anxiety. There has been some talk here of a product called "rescue remedy" by Bach that some use for that. Not sure what type of thing would be good for him, but you could ask one of your doctors. Our naturo gives us a product called "De-Stress" by Biotics Research and it says on the label "reduces stress and anxiety. Don't know exactly what is in it, but it seems to be some sort of "peptide". You could look it up on-line and think you could order it from the website. I can't say for sure how it helps my son, but it is just in his "mix" of supps that he takes, so I just go with it. My son doesn't outwardly show anxiety in an obvious way, but you never know what our kids are feeling internally, and calming the nervous system seems key for the tics.
Faith
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Hi C.P.
re the hyperness and more vocal tics? What brand of inositol are you using? I was just looking at the corn allergy "list" to look up some ingredients in a box of cookies, and was surprised to see inositol on it. (you are avoiding corn, right?) I guess that means some inositol could contain corn. The brand I have is Vital Nutrients given by our naturo and it states "no corn, etc." You might just want to check the label.
http://www.cornallergens.com/list/corn-allergen-list.php
I am waiting to experiment with that again too. Please keep us posted if you try again.
Good luck,
Faith
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Hello Janey,
I will be dealing with the same thing (stress of third grade) come September.... I am curious, you mentioned your son has various tics which go away for months at a time? Were you using any supplements in the past, or any natural treatments, or are you just looking into this now? I am guessing that your son's tics are not that noticeable when they are present? When you say "stress", do you mean he immediately tics in an uncomfortable situation (such as being called upon in class) or all the time during tough times, like leading up to an event or a test? And if you have given him any supplements such as the taurine you asked about, could you tell us if you've seen any effects?
My son has had the eye blinking and is currently doing very well with that, but I will notice him start twitching if someone in authority is speaking directly to him. I saw this prominently on his First Communion Day. But then it will subside and he hardly does it at all, maybe just a few while watching tv and night once and a while. I too, am not looking forward to the start of a new year, teacher and shuffle of classmates.
Thanks,
Faith
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Thanks for the info and updates, Chemar, and I'm glad I found you on the other forums.
I'm so glad all is working well again....I was convinced the crash was the evil work of some right wing activists ..........or is it left?
Regards to all
Faith
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Hello mblack,
my son who has tics does not seem to experience the restless legs, but I definitely do. It feels like I've probably had this for about 10 years or so, and it is just something I deal with and have not really tried anything longterm to relieve it. I only experience this at night in bed, it sort of comes and goes, and I have noticed it definitely flairs worse when I have consumed red wine that day, so I have been avoiding that. Perhaps you could start logging what your child eats during the day and when it is worse, maybe you could pinpoint a food or drink that seems to make it worse.
And I seem to remember that when I spoke on the phone to Bonnie Grimaldi's husband about their supplements, he did say that Restless Leg syndrome is related to TS ("on the spectrum").
Dedee, you mentioned inositol as helping your son -- do you mean it relieves the restless feeling or just helps with his tics (or is he not the one with tics?). Our naturo has added this supplement for my son to further relieve anxiety, although I gave a little about a month ago and of course, imagined more tics, so stopped. I am going to try again because he still has some lingering vocals and am worried about the anxiety of school starting at summer's end. Could you tell me more about your experience with the inositol (what effects it has had and who recommended that?). Also, does your son with tics take that too, and if so, has it helped at all with that?
Thanks
Faith
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Pam and Patty,
thanks so much for all that insight. I think I am now feeling a little more confident and am going to be able to dig my heels in a little deeper to keep this all up.
Yes, the nutrition and and absorbtion is definitely what I am trying to accomplish, so I think I will stick to that in that my son is a skinny guy and that is how I was able to convince my mother of all this -- that he eats real food so much better when he isn't constantly consuming junk (although I wish I could see a little weight gain to further boost my argument!). My mom and a couple of close friends are aware of the tic issue, and my mom for one is breathing so much easier when she sees him obviously better.
Thanks sincerely for taking the time to share your own wisdom and experience. .......... Yes, God does answer our prayers with so much more than we realize!
Faith
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Hi Carolyn,
Pharyngitis is another word for strep? I think? Maybe he could tell just by looking at it, if it was red and ugly. My son was prescribed amoxy last year the same way, not test, he could just tell because he saw red and red spots (along with my son saying throat hurt), and he said it looked like strep. They will prescribe antibiotic for bacterial pharyngitis, but maybe not viral? Although not sure how they know the difference.
Are you against taking antibiotics? I'd be curious to know if (even tho you have had pandas testing and was negative?) if your usual tics subside to any degree if you do get on the amoxy? Please let us know.
Faith
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Pam,
thanks for that, I totally understand, but I am still having a little time of it, so can I pick your brain a little more? ..........
Does anyone ask why you had lab tests done on your son? What reason do you state for insisting on better nutrition for him (I know this is obviously a good thing but the temptations and availability of the junk at social gatherings makes this hard to stay under the radar on it -- when I bring out my goody bag of healthy alternatives, I stick out like a sore thumb --but I try not to make it obvious). You see, I don't want to tell every mother I converse with about the fact that my son has tics--or that's just going to call attention to them, and why do that when it is not really noticeable to everyone? But my problem is how to deal with this when we are in the company of others, and they are all having pizza and hot dogs and juice pouches and I am limiting my (skinny) son's sweet intake and giving him alternatives. They hear me telling him he can't have this and that and I don't want to say the real reason, so I say he has a sensitivity to the foods, but sometimes they ask me what will happen and I get tongue tied so I just say he has mucous and stomach problems and he doesn't like to talk about it so I just wink and change the subject. It's only the people that I hang with often that I worry about, because the more we are together, the more curious they will be and eventually we will get to that conversation. I really try to keep it to myself, but it's getting hard when there are so many social situations.
I guess the hard part for me is being in others company over and over and I still havn't gotten that part down pat yet, and when my son doesn't exactly want to comply and he wants that big fat jelly donut that everyone else is eating, ....(and they'll say "oh one won't hurt him").... there's just no one easy way.
Any other suggestions on how to handle this once and for all?
Thanks
Faith
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Calicat,
You have beat me to the punch, I was thinking of asking for the same advice. My son is usually pretty compliant, but lately has been insisting on having certain things when it is around, and I have given in here and there, but it is starting to become an everyday thing (birthday cupcakes at school are a real thorn in my side!) I really believe keeping these things to a bare minimum is beneficial for his tics, for when there is too much, I can see something wanting to start. Luckily, he does not have immediate reaction, I think for him it is just when there is too much. (we have to keep corn and yeast out mostly, and that is a tough one).
In the beginning, after we saw the DAN doctor and he put us on the elimination diet, I just explained how we had to do this for a little while for his health because his blood test results said we had to. I found alternatives and he was not totally happy, but he was pretty good about it.
I felt so bad when they cooked hot dogs at his last baseball game, (the bun (yeast) hot dog and ketchup (high fructos corn syrup are all off the list) but I had to let him have one, he was like "but mom, it looks so good", and he sucked it down like it was his last meal. But the more I say okay, just this, he keeps trying to push it and cheat. I can't keep letting it happen, and then I can get very irate when he doesn't listen to me on this. I know what he can and can't have, I just don't know how long I can keep him cooperating. It isn't getting easier.
So, I'm up for any advice or suggestions too!
Faith
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Hello Becky and welcome,
I was wondering what type of natural treatments you have tried with your eldest--was it just for the asbergers symptoms or the TS? May I ask what ages your kids started with tics, and do they just have the tics you mention, or others at different times?
My son is now eight and he has a vocal sound he makes which has gotten less frequent in past couple months, but I still hear it a night, so I have been interested in trying carnitine too, but am a little shy on trying too many new things.
Yes, I would start with the magnesium. B complex and fish oil seem are ones that naturopath doctors would recommend too, but some don't do well on these so its a watch and see. I think you also have to look at their diets--do they eat lots of junk foods, especially the 12 yr old? I think I read somewhere in that someone found milk to be a trigger for vocals, so you could try removing dairy for a time. That seemed to work for my son last year, but when it started again, that didn't seem to help anymore, so again, try and see.
BTW, a good shampoo to try is Jason's brand (we use the natural lavender)--it has no sodium laurel sulphate, and they sell it at the Vitamin Shoppe and probably Whole Foods too.
Sorry, you have to go through this with all three of your children, though it sounds as though it is not too severe for any of them? May I ask if you or their father also has tics?
Faith
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Hi Itsmes,
So glad things are still going quite well.
Could I ask a few questions, please?
I am interested in what you believe attributed to your son's attention and irritability getting better as you mention, if that is the case. I'm starting to wonder if my son is having a focus/attention issue and he is very irritable in the morning, but just at me, so don't know if its just manipulation of mom.
Itsme, you are taking the Bontech vits too? Do you see any improvement/calming effect on your ticcing?
What kind of enzymes do you use (and why) and how do you think it helps?
Also, not trying to be cute, but how did you determine the 93% better? Did he ever have any vocal?
Thanks
Faith
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Hi Chemar,
Could I just ask what supplement your son takes for ADD? I believe you mentioned somewhere what he takes for that if I am correct. And how well would you say this works for him? (forgive me if I am wrong on this). My son is not diagnosed with that, but I am starting to wonder if there's not something there--he can't pay attention to anything to save his life. He always manages to do what he wants to do, sort of a passive-aggressive type personality. I'd like to try something to see if it makes any difference in his focus. Any suggestions? (He's not currently taking fish oil because I think I've noticed increase in tics and flax is a no-no food for him--do you know if evening primrose oil is good for this?).
And if anyone else has any suggestions, it would be appreciated.
Thanks
Faith
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Excellent Carolyn!
Very interesting about the test you gave. Jus curious, are your classmates and/or teacher aware of your TS now?
Faith
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Dylan's Mom,
May I ask if you have ever had PANDAS testing? I mean if you believe it is that, why did you choose to treat this way and not find a doctor who could test and provide treatment with antibiotic--or did you not know about that at the time? You say your son has had tics for a number of years now? But has he had strep over the years with flair ups at those times? I mean, how do you know it is definitely PANDAS related? You said a few months ago he was in constant ticcing--was he ill right before or during that? sorry for all the questions.
Also, could you explain what "check for blockages" means? How do they do that? And am I understanding correctly that after the treatments (what are the "treatments" by the way?), all his tics are not present right now?
Thanks for providing this info to us.
Faith
Update on Pandas son
in Tourette Syndrome and Tics
Posted
Welllll!
sorry,
yes, we are not really discussing PANDAS now....we'll continue in another corner of the room.
but its so good to keep opening up talk, you never know when it might give a clue or answer to someone.
Faith