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all 3 kids with tics?


san70
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I have 3 DS: 12, 9, and 5. Oldest ds has had tics for as long as I can remember. We have a clean diet, he takes a multi, tried Epsom, and the tics just wax and wane. They've changed throughout the years and lately it's a lot of hand/finger/arm stretching and bending and occasionally bending his back. He stretches his toes, too. I notice an increase when he's nervous, anxious, or excited. Middle ds has displayed some tic-like behaviors, like throat clearing and occasional neck bending, though I'm not sure if I am just hyper sensitive to all of this. Youngest ds is my main concern right now. He seems to be showing lots of tics: eye blinking and stretching arms out and/or up. He also clears his throat. Neither DH nor I had tics and the only one in the family that we think may have had tics is a cousin, though she does not have tics now. Youngest ds had strep months ago and scarlet fever and was treated with antibiotics. I've read and researched PANDAS but I have not seen any drastic behavior changes in oldest or youngest. Oldest just has typical adolescent attitude at times. I am so confused and do not know what to do at this point. I feel as if there has to be something going on with them since I really can't trace family history (except for possibly the cousin). How can all 3 kids display tics?? What kinds of tests should I try? Any advice would be greatly appreciated. I do not know where to start...Thanks!!

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Hi

 

the fact that your youngest had strep/scarlet fever is a concern I would suggest you address with a PANDAS/PANS literate doctor...

 

Our PANS forum has a lot of info on testing etc and the Cunningham test is now available in many states.

 

Other than some infection connection, or a genetic manifestation of TS, there is also the possibility that something in your home is a tic trigger.

We have had parents here whose kids had tics due to hidden mold in the home, or arsenic exuding from woodwork, formaldehyde from carpeting, lead in the old paint etc etc.

 

Be sure to go through the "Helpful Threads" pinned to the top of this TS/tics board, as well as the one on the PANS forum

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We have three daughters. The oldest (27) and the youngest (almost 14) have Tourette. The middle one (24) who actually had issues with strep and had severe Scarlett Fever as a small child is the only one of our children who doesn't have Tourette Syndrome. I investigated PANDAS on my own and through both our Pediatric Neuroligists, and although there is plenty of data that viral or bacterial infections can exaserbate exisiting tic disorders, there isn't a lot of peer reviewed data that these types of infections can cause them.

 

Most children have strep several times during childhood, most do not develop tic disorders. In our family, my husband had Tourette (severe in childhood and adolescence and mild symptoms since he got out of his early teens) and I have OCD and severe chronic migraines, so there is a familial line there. However, when investigating our family history, many of my husband's family members vehemently denied TS symptoms, but we have found out later that many of them have it, and many in my family deny OCD and yet many of them have this condition. Sadly, many people will deny having a disorder or lie about other family members having disorders.

 

Simply because "A hapened then B happened" does not always mean that "A caused B." I found myself off course too many times when our now 27 year old dd first displayed TS, I used all kinds of ineffective "natural" remedies, beleived relationships between "A and B" that had NO relationship and in the long run, I wasted a lot of time chasing wild geese, when I could have been pursuing avenues that could actually help my daughter.

 

With our youngest, who also have TS, we use a Pediatric Neurologist, and use supportive home therapy, such as Magnesium Oil and a back massager. We also use prescription meds, as we found, at least in our situations that using purely Natural remedies was not helpful and wasted a lot of time and plenty of money that we could have used pursuing our daughter's illness from a peer reviewed, well tested, proven medical perspective.

 

It took me years to come to this realization, I wish I had learned earlier, as I was not only wasting MY time, but was wasting my daughter's childhood looking for answers and "cures" in all the wrong places.

 

Our oldest dd is now off all her meds and her TS has stabilized to a livable level, however, she needed prescription meds for years just to function and be able to be comfortable and not in pain, My husband takes no meds either, except for some OTC pain meds when his tics cause severe muscle pain. But, he took no meds as a child and his childhood was awful from the TS.

 

I hope you find some things that help your children. No one regimen will help all people with the same condition, and what works for one person may not work for an other. If I can just save one family from going around in circles like we did, wasting time our daughter did not have because we "didnt' want to put our child on drugs" then I will be happy.

 

Also, simply because few people in your families admit to also have TS doesn't mean that no one has it. Many people have mild TS and don't know it and some refuse to discuss it. Also, it is not uncommon for TS to appear in a child who has no hereditary predisposition to it.

 

We have found, with over 50 year of Tourette history (my dh showed sx in toddlerhood) in our family and more than 26 years battling it with our own children, that medical science has a lot of good to offer children and others who are suffering from this most debilitating condition.

 

Your mileage may vary. Good luck. I hope your children have some sucess and fewer tics in the near future. :)

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Welcome to the forum PGell

 

I do have to say that from my experience (and that of some others who have posted here) sometimes a neurologist (pediatric or otherwise) can be anything but helpful....in our case, the ped neuro insisted on medications that caused my son serious harm!

We found an Integrative physician far more beneficial. (MD or DO)

 

I also diagree that TS "usually reqires Rx meds" as for many people, my son included, the types of meds (and we tried a number of them over a 1 year period) produce side effects that are often more troublesome than the TS...and in the case of some, can produce med induced psychosis, tardive dyskinesia and a host of other severe side effects.

 

After we went through 6 months of gradual and excruciating withdrawal of the meds for my son (under careful doctor supervision) he finally turned a corner when we began the natural treatments that I have documented in my signature link.

 

So where Rx meds and pediatric neuros may help some, they can harm others!

 

Each person is different and so what we promote here is to fully investigate all possibilities and follow the treatment path that works best for each child. There is no one "magic bullet" for TS.

 

Also, many kids are misdiagnosed as having TS when in fact their tics are caused by other factors, including PANS/PANDAS, allergies, toxins etc etc.....and sadly most pediatric (and other) neuros are still very far behind the curve of knowledge on these well documented cases.

You really do not seem to have all the up to date facts on PANDAS either.....perhaps looking at our PANDAS forum may give you a different perspective. Also remember, PANDAS and TS are not mutually exclusive.

 

My son's father (now in his mid 60s) also has TS, and it goes back a long way in his family. OCD has some roots in my family.

My son is now in his mid 20s and did not begin to show improvement until we took him OFF the conventional treatments and started the alternative/natural ones. That was 12 years ago and he remains unmedicated and most people now do not even know he has TS.

So as far as the treatments for TS. our personal experience is the exact opposite of yours, but I do agree that what works for some may not work for others and leave it at that.

 

Wishing you and your family continued wellness :) and thanks for sharing your experience.

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I won't go into the the details, but In our case, two ped. neuros; two very negative experiences.

 

Such that I would recommend to someone dealing with tics that they skip the pn entirely, unless what they need is a diagnosis for acess to helpful school programs.

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PGell. Wow.

 

My initial reaction is that I lost faith in the traditional medical community when I was starting to deal with my son's problems, due principally to the fact that traditional practioners fail (refuse) to think beyond "there's no peer reviewed research..." If I could do that every time someone asked me to help solve a problem where I work, I'd be out of a job, and quick. Medical professionals who use that excuse to hide behind should feel shame for doing so.

 

So several years ago, my son develps a neck tic, then things progress to arm flaps and leg bends and breathing tics and facial tics and ocd type behaviors. A PN, a cruel person, diagnoses TS (with the exception that a full year had yet to elapse, but it would), gives me prescriptions for two meds. I ask what alternatives are there (we had already begun doing some food elimination)? None. All anecdotal information is quackery. When I say I won't be using the meds, she looks at my son, who's still lying on the table, and asks him directly if he wants the meds, don't you want to feel better?

 

So we go to an alternative environmental practice, get serious about diet, and get lots and lots of information and support right here.

 

My son't tics are barely noticeable now.

 

As everyone says, not two cases are the same. But what had every hallmark of TS in my son has come to be managed by diet, a multivitamin and one other supplement.

 

I took the time to try and figure things out without meds. And for me (not only me, but also for my wife and, needless to say, my son), it WAS worth the time and the energy and the stress and the worry and everything else.

 

So you are a proponent of meds. Fine. But please stop suggesting that people are wasting their time by trying to find alternative ways to help their children.

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In our case the ped neuro was only willing to prescribe meds that would have debilitating side effects to my 5 year old son!! I can attest that the natural way is really the best way to go to have lasting results and a healthier child regardless of whether the tics are relieved or not. Treat the cause NOT the symptoms!! I'm not sure why PGell is posting this stuff on a natural and alternative therapy forum??

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PGell, everyone knows that they can use conventional medication. There's plenty of information on that.

 

Our Tourette forum is focused on natural and integrative therapies.

 

Please refrain from these types of negative posts. Thank you. Sheila

 

 

 

 

 

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I wanted to offer that , while i do not think that all that tics is PANS, I have a child who has tics that respond to steroids.

Steroids and abx cleared up her tics three times for many months, each time.

We go to PANS knowledgeable neurologist and already did when the ticc-er started with her tics. The doctor was sympathetic to our plight and thought we should give steroids try. It worked!

I think that tics only can be a presentation of PANS (though not "offically")

I also have multiple kids affected with different variations of PANS. The linking factor is responsiveness to steroids.

Maybe you can look into that avenue of treatment.

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PowPow, one just has to be careful though, as giving steroids to a person with TS can actually have a detrimental effect on the tics...causing a major waxing. I know of someone with TS who had steroid burst for a back injury in their 50s and tics that had been pretty much dormant since they were a teenager came back and have not subsided!

So where steroids can help a PANS patient tremendously, there should always be caution and careful consideration if there is a chance of TS.

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When we started our journey with tics 7 years ago, we started with a ped neuro who, after just 30 min, was ready to medicate my ds at 5 yo with crazy drugs, I was shocked. No real questions about family history, diets, or anything. This left a BAD taste in my mouth & that's when I found this incredible forum with incredible support & knowledge. I had a friend who saw the same neuro for migraines for her dd & he offered up drugs immediately.

 

So, I'm going to get my 12 yo ds & 5 yo ds tested through ELISA/ACT. Should I start with the basic panel of testing?

 

Thanks!

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