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Do tics always return?


Becky G

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I am wondering if tics are always going to be a part of my children's lives even with diet change and supplements. Will there be waxing even if they are abstaining from offending foods and such and taking their supplements regularly? I was so relieved to see my son's dramatic improvements last summer but the tics got so, so bad for a while this fall. He wasn't being as strict with diet change and supplements but I had never seen him so bad. They seemed to get better with the introduction fo L Carnitine for the first time (only seemed to need it for a few days) I guess my basic question is: do tics resurface no matter what?

Thanks.

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Hi Becky

 

*if* there is a *correct* diagnosis of Tourette Syndrome, then one needs to be prepared for waxing and waning of tics, although the good diet, supplements etc seem to keep those waxing periods less frequent and less intense. My son had some tics when he was younger that manifest once and have never been seen (or heard) again, whereas some of his tics have been around to a greater or lesser degree for 7 years.

 

 

if the tics are being caused by something other than TS, then there is often complete remission or dramatic improvement once the root cause is found and correctly treated. (eg allergies, infection, heavy metals, candida, PANDAS, pyroluria, photosensitivity, etc)

 

many kids have what is known as childhood transient tic disorders, which seems to resolve on its own as they get older, frequently helped by dietary modifications, detox etc

Even those with genetic TS often show diminished tics as they pass the puberty years

 

so

I guess the short answer on whether tics always return is "depends" on what the root cause is.

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Becky,

How is your son doing? About a month ago you posted about him having a major flair up after alot of dairy, and then it got somewhat better after a week or so? Has that lasted or is he having more tics presently? Are you still giving the l-carnitine? Also, I think you mentioned you don't have any of your children getting vaccines, correct?

 

Faith

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Becky,

How is your son doing? About a month ago you posted about him having a major flair up after alot of dairy, and then it got somewhat better after a week or so? Has that lasted or is he having more tics presently? Are you still giving the l-carnitine? Also, I think you mentioned you don't have any of your children getting vaccines, correct?

 

Faith

 

 

Yes, you are right that we don't vaccinate.

He is doing dramatically better. He only took the l-carnitine for a couple of days. I think he noticed such an improvement that he did feel the need to take it anymore. He still has a ticcy sound in his throat from time to time. My attention has been elsewhere (getting ready to buy a house).

 

Oh, and Chemar, I am pretty sure that TS is inherited in my family. There were a couple of people a few generations back who "twitched", as my birth mom said they called it back then. I have never had any signs of TS myself but Aspergers has come down through my husband's side of the family so I sometimes wonder if that doesn't magnify things somehow, make things more likely to appear. (Forgive my lack of putting this more clearly. I am PMSing and my brain is iffy today.)

 

Anyway, thanks for the answers. They give me something to think about.

 

Oh, one more thing. My oldest one with TS had about a year or so of no tics at all when she was about 13 or 14. She is 16 now. The neuro who diagnosed her said there was a good chance the kids would outgrow it.

 

And one more question. The 10yo started with all the symptoms of TS last year. There were times we wondered when she was younger but now we know. So I am wondering. Is it worth our while to get her an official diagnosis like the older two have?

 

Thanks.

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hi Becky

if the L-carnitine was helping, I am not sure why you stopped giving it?

 

My son gets dramatically worse if he slacks on his diet especially and on his essential supps

 

just a thought...........House buying/moving etc may be causing you stress and so upping kids' stress= increased tics

 

 

An official TS diagnosis can be helpful re school accommodations etc

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Becky,

 

I'm wondering if you have any history of autoimmune disease on either side of the family? Also, do you notice anything different about the kids when they are sick? Like never sick, never fever, or sick a lot, worse/better with illness? Have you ever had anyone's zinc level tested? I think I could ask you a million questions, but I better stop right there. With the move and all, I bet you don't feel like sharing life story on 3 kids!

 

I do notice that you say that your older son had a bad reaction to DPT. That's part of the reason that I'm asking about any patterns with illness that you may have noticed.

 

This is an article that might be of some interest. I happened to catch this story on the discovery channel. Interesting reading/watching , in your spare time ^_^

 

http://www.pbs.org/wgbh/nova/genes/?campai...enes_2007-10-16

 

There is a watch on line, option across the top.

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Becky,

 

I'm wondering if you have any history of autoimmune disease on either side of the family? Also, do you notice anything different about the kids when they are sick? Like never sick, never fever, or sick a lot, worse/better with illness? Have you ever had anyone's zinc level tested? I think I could ask you a million questions, but I better stop right there. With the move and all, I bet you don't feel like sharing life story on 3 kids!

 

I do notice that you say that your older son had a bad reaction to DPT. That's part of the reason that I'm asking about any patterns with illness that you may have noticed.

 

My kids are rarely sick but they do run fevers (I rarely do) My girls especially have been known to spike pretty high fevers. But it has been a few years since I remember anyone being that sick. My oldest of the three with TS used to get extremely ill and, out of desperation, I took her for a few chiropractic adjustments when she was three. She was a different girl after that and seemed to fight things off better.

 

The only autoimmune disease in the family would be my mil. But she had a dye injected for a surgical procedure that this is related to. I have fibromyalgia (mild and manageable) so I guess that might fit.

 

I can usually tell when one of the three are getting sick or seasonal allergies are kicking in because their tics flare up then too. I mentioned this to a doctor and she looked at me like I had two heads. I would like to find a doc who gets it but I am not sure who to call first. I have not had their zinc or anything tested. I didn't know anything about zinc and it is hard to find a doctor who understands.

 

Any other things I should look for regarding patterns of illness? Thanks so much for your help. Going to check that link now.

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hi Becky

if the L-carnitine was helping, I am not sure why you stopped giving it?

 

My son gets dramatically worse if he slacks on his diet especially and on his essential supps

 

just a thought...........House buying/moving etc may be causing you stress and so upping kids' stress= increased tics

 

 

An official TS diagnosis can be helpful re school accommodations etc

 

The person who told me about l-carnitine originally didn't say it was something to take continually so I was under the impression it was just for flare ups. I will have to revisit that topic, I guess.

 

Regarding school accommodations, we home school so they get all the accommodations they need. So would it still be worth while to seek an official diagnosis? Would I start with a ped and ask for a referral to a neurologist?

 

With winter illness season coming on, I think it might be time to remind myself and my kids to keep up the supplements.

Thanks for your help.

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Hi Becky,

 

yes, finding doctors who understand what so many are seeing and sharing anecdotally on sites like this is hard.

Thankfully there are some, and it seems an increasing number so I remain hopeful that soon doctors will be trained in nutritional healing and a more holistic approach to illness than is maybe happening in the conventional schools of medicine.

 

still, this is now and so we all have to do what we can on our own and keep seeking for a good doctor.

 

My son is now under the care of a D.O. and I must say I like the approach as well as the interest in learning of new things. Their is an open mindedness. And DOs are trained exactly the same way as conventional docs, just with that added *something* that helps them see the whole picture more easily I think, and a willingness to at least listen and consider and investigate when a patient shows marked improvements without having to take precription meds. It isnt a "one pill fits all" thing is it...whether the dx is TS, or PANDAS, or pyroluria, metals/vaccine, allergies, photosensitivity, toxins, parasites like candida etc or all of the above.....it is a much bigger situation than the way I have found most of them look at illness, as a dx followed by an rx.

 

anyway, the l-carnitine is an amino acid and it is IMHO always good to have on and off periods with those, and always to try to work with a doctor when giving them, but I know when it was helping my son, he took it for about a year after we first started the supplement program and then we had a re-eval and tests etc and tapered down to what he now takes as his "maintenance" health program, with a few things kept here in reserve for "as needed" in those TS waxing times.

 

A Developmental Pediatrician Specialist can give a TS dx...neuro is IMO only needed if you have a really good one who is open or if their are other neurological issues involved.....for TS and if you dont want to medicate, I would see a dev. ped if you have one.

 

re getting a dx...honestly, we have it in the family and we dont shy away from the dx....it is worth having IMHO. Whether for school or later in life when work and all those other things come along. Sometimes having that dx can be VERY valuable in getting needed accomodations and understanding in Life!. Doesnt have to be used if not needed, but worth having.

 

honest, being disciplined re the diet and the needed supps really has made the night and day difference in my son's overall health, including his TS. ... and pretty good for the rest of us too! We are so used to eating natural now that we couldnt imagine eating the stuff that makes us feel yuck anymore. ...and taking just a few but needed supplements seems to help us all along. My son, almost 18yo now and at this for 7 years :) is getting so good too at finding foods rich in what he requires, and so always reducing the level of actual capsules and pills that he has to take, and chats to his doc now himself about these. ^_^ proud mommy ^_^

 

and we are back at that point to a good doctor...dont give up searching...use google, ask about your area in case others have seen good ones, but having a qualified health proffessional really makes such a big difference to following a clear course of treatment.

 

oh my I have rambled on.......... but hope I have been able to give some pointers through it all

 

Cheri

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Hi Cheri,

 

I haven't been able to figure out what IMO and IMHO mean??

 

Also, I searched for a Developmental Pediatric Specialist in my hospital group but nothing came up. Do you have any suggestions on how to find one?

 

And one last thing with regard to the topic of this thread, do all tics or movements necessarily mean something? Like an exposure to illness, food etc. My daughter has started a lip puckering movement which has been gone for many months. Coincidentally she has had a particularly stuffy (allergy?) nose and chapped lips recently. Can these kind of things sort of trigger a movement that sticks around for a while?

 

Thanks so much

 

Lisa

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sorry IMO is cyberspeak for "in my opinion" and the IMHO is 'in my humble opinion" ^_^

 

with Tourette syndrome it is IMO not always possible to find a definitive trigger for tics...waxing and waning is characteristic of the syndrome and yes, internal or external triggers may still be causing the waxing, but we have found that it just isnt as cut and dried as a definite trigger being identified all the time. Sometimes those waxings just come, with no clear reason why.

 

Developmental pediatricians are usually referred to by one's GP or regular pediatrician.

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Hi Becky

 

*if* there is a *correct* diagnosis of Tourette Syndrome, then one needs to be prepared for waxing and waning of tics, although the good diet, supplements etc seem to keep those waxing periods less frequent and less intense. My son had some tics when he was younger that manifest once and have never been seen (or heard) again, whereas some of his tics have been around to a greater or lesser degree for 7 years.

 

 

if the tics are being caused by something other than TS, then there is often complete remission or dramatic improvement once the root cause is found and correctly treated. (eg allergies, infection, heavy metals, candida, PANDAS, pyroluria, photosensitivity, etc)

 

many kids have what is known as childhood transient tic disorders, which seems to resolve on its own as they get older, frequently helped by dietary modifications, detox etc

Even those with genetic TS often show diminished tics as they pass the puberty years

 

so

I guess the short answer on whether tics always return is "depends" on what the root cause is.

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