Tourettes Uncovered

[Fixit]

Emerson...i'm sorry i don't remember...

are your tics gone...

is it basically ocd and sleep issues right now??

[nevergiveup]

Emerson, Thank you so much for answering my question. Ever think of studying medicine and becoming a doctor?

NeverGiveUp ~ I was treated for "Tourette's" tics (refraining from saying diagnosis.. some papers say I DID get the dx, some disagree...) for about a year.

In all honesty it's difficult to tell which medication was doing what, IF any of them were actually helping, & how much of my improvement was just natural P.A.N.D.A.S. waxing & waning. I take no medication now, but in the past I have taken Aricept, Risperdal, Depakote, Tenex, assorted benzodiazepines/tranquilizers & many others that escape me at the moment. If you're dealing with P.A.N.D.A.S. though I'd recommend antibiotics or steroids or something, just because the whole reason I stopped pharmaceutical treatment was because of the not-so-great side effects.

My tics were at their worst when I was eleven in the sixth grade. What I had to do was really just explain it to those who were willing to listen, & ignore those who weren't. My little shpiel generally consisted of "It's not my fault, I can't control it, I would stop it if I would. It's like when you cry or breathe. You don't think about it... But your body does it anyway." I'm fifteen now & I'm used to my peers being less than understanding, & I don't know how new/experienced your daughter is to ticking, but a big part of it is just getting used to it & learning to brush off others' ignorance. The breaking point for me was in the seventh grade, when a substitute teacher, not a student, yelled at me for twitching & mocked me when I told her that I had Tourette's. She went so far as to accuse me of lying & sent me to the office for being disruptive. Well, I didn't go to the office, I went to the bathroom & cried instead. It was then, a little over a year into my real battle with all of this, that I realized that if my body was working against me, there was no point in having ME against me too. It's easier sad than done & I'd be lying if I said that it just magically stopped hurting when people stared at & made fun of me, because it still does, but I just decided that I had enough to deal with & that ignorant people were the last thing that I cared about.

My "active social life" consists of four friends & that boyfriend, but I would rather learn to be happy alone than try to deal with people, who especially at our age, aren't exactly receptive of anything "different". I still have NO friends at school, still eat lunch alone & start panicking when the teacher says anything about groupwork, but withdrawing socially isn't for all kids, & that's alright. Really it all just depends on your kid. I hope you & your child are doing well! <3

 

FuelForAll ~ I'd like to think I would know, hahah. I've got two out of the three myself. I was referring to kids exclusively with Tourette's. We get our array of symptoms from our Basal Ganglia basically just getting confused & messing everything up, but most of Tourette's is thought to be genetic. So why do those three other symptoms occur simultaneously so commonly?

[EmersonAilidh]

FixIt ~ Tics are MUCH less of a bother now, but not totally gone. They have been worse than usual this week. :/ I think I may have caught a bug over the weekend.. I've felt a bit under the weather. So I guess that's why. But yes, main concerns are mostly OCD/anxiety, fatigue/sleep issues, brainfog, & general pain & aches.

 

NeverGiveUp ~ I get asked that all the time, hahaha. But no, I don't. Once all of this over & done with you'll be hard pressed to get me back into a doctor's office for a wellcheck. I wanna be a psychologist.

[Paul Clarke]

 

The one boy on the show, who was speaking out against bullying, doesn't live to far from us. His mom was the one trying the natural remedies. I wonder if she ever thought about testing him for infection. What I thought was interesting though, was her conversation with their doctor about the potential of her daughter showing symptoms. How many times have we been on here going "I think my other kid has it now!!!"

 

 

Hi Folks,

 

I don't normally get involved in these kind of conversations but I skimmed across the posts and thought I would offer a little information for you.

 

Firstly, I am Paul. I am a co-founder of Jaylens Challenge. Jaylen being the person you referred to as the 10yr old boy speaking out against bullying on the show.

 

You made a point about questioning whether Jaylens mother Robin had ever thought about testing him for infection. Now think about it. If you had a 10yr old boy who from the age of 2yrs had been diagnosed - do you not think that you would have exhausted every single avenue in a bid to give your child some form of normality in life before reverting to a natural approach? Of course you would. However, it is not my job to speak on behalf of Robin as I know she will be keen to answer any questions you may have herself so I have invited her along.

 

In the meantime, if you want to head over to www.jaylenschallenge.org and read more about Jaylen and his campaign to educate people about bullying then you are more than welcome. Even better, why not register and join the forum there and you can ask questions directly to Jaylen himself. He loves nothing more than to help people understand.

 

Thanks for listening folks.

[JaylensMom]

Hello all on this Forum. I am Jaylens mom who was one of the subjects in "Tourette's Uncovered". By the way, its replaying right now as well as 3 more time in the week. I definitely recommend you all to watch it again as some of you are saying things about the show that are not true or maybe you missed some parts to the show.

 

I have several people and several issues to address here. I must say though, the young girl here at 14 years old is much brighter beyond her years.

 

For Airial95 and Fuelforall - Michael, who said that we didn't test for PANDAS? As the show stated, my son started with symptoms at age 2 and received a diagnosis at age 3. He just turned 10 so, that puts me at dealing with this for 8 years. I have a very good Neurologist and NeuroPhsycologist. We utilize the best of the best doctors from Duke University as well. My son has been tested for EVERYTHING under the sun. From Wilsons Disease, infections, Lyme, etc...His copper levels and mercury levels have been checked (which are high).

 

Regardless of what people say here, this show is NOT A NEW SERIES! It was ONE time show that is re-airing. For them to explain my sons whole life history to you and everything we've been through would have taken a 10 hour documentary. They really just don't have the time. We've also done specific Strep titers. All negative. We are aware that Strep can increase tics by a thousand times...so anyone near him with strep, he automatically gets a round of antibiotics.

 

The kids in this show are not the MOST SEVERE. As the14 year old young lady here stated to you, that is the nature of Tourette's and tics. The first boy Jonah was severe, but the 3 other boys were not. As a matter of fact, Colin, the last boy only has one tic - the shaking of his head. That's not severe at all. I think the show did a great job at showing you the different ways in which Tourettes can manifest itself. As for Jonah, he ABSOLUTELY needed the DBS surgery. His quality of life was severely compromised. The show stopped filming in July. That young man Jonah is tic free today.

 

As far as the rage, thankfully I do not have to deal with that. When that Defiant Disorder comes with Tourette's, it's called ODD. Tourettes mainly comes with ADHD, ADD, ODD, but most commonly OCD - which is what we deal with. Tourette's is a neurological disorder...OCD is also neurological. My son however, does have sensory and textures issues as well, but that is due to his ASPERGER's part of him.

 

Whoever stated that why do they just have one doctor on the show was incorrect. There were a total of 3 Neurologist on the show, including my own. Do you remember seeing me talk to her..she was doctor of another nationality, Dr. Qureshi. Dr. Albright was on also. WE don't just let our MD's or pediatricians throw us a diagnosis and thats it.

 

Yes, I'm the mother that deals with things more naturally. I have a total of about 40 supplements for my son, I control his diet, sugar, I use a chiropractor (who also has acupuncture), massage therapy, wears an EMF bracelet, etc... AGAIN, they simply don't have enough time to tell you all of this. But you have to think of this... I love my child like you love yours, why would I not do everything in my power to give him rest from the 24/7 ticcing? MEDICATION did not work for him! He weighs only 60 pounds and is not eligible for many meds, but the one's we did try, came with horrible side effects and didn't really work. If he becomes harmful to himself, I will use meds, but right now, he's a "twitchy boy" who is otherwise healthy. Why in the world would I use a drug on him that causes heart defects? He can twitch all day long but at the end of the day, if he died of heart failure,I would never forgive myself. Here's the bottom line though. THERE IS NO CURE FOR TOURETTE SYNDROME! If there was, I would have done it! What I do holistically is to try to manage the tics the best I can. Seriously though, whats the difference if you tic 5,000 times a day or 4,500? Even the DBS surgery isn't a cure. Its a temporary fix until that boy goes through puberty and it subsides (as it usually does around 19 years old).

 

Lastly, some combination meds do work if they meet the weight requirements. Marques from the show takes meds to keep him from swearing (which by the way only affects 10% of Touretters) and it works.

 

Bottom line, tics wax and wane. This wasn't a shock video. The only shocker was Jonah and he was really THAT bad. His parents made a wise choice for him. Nothing was scripted for ratings. These are our daily lives and most people with Tourettes we are getting feedback from, thought it did a great job at showing the true nature of TS. My son wasn't ticcing bad all the time. When they came back (when he was speaking to the school), he was on a wane period and not ticcing too much. We chose to open up our lives to all of you in order to educate, no one was paid, it would be nice if you would try to open your mind instead of bash these kids' parents.

 

Here's a tidbit also: with PANDAS mostly the tics do go away. When it is inherited TS....most likely doesn't. Also, they showed boys because Touretttes is 3 times more higher in boys and 75% worse than girls. With most girls, it isn't a true inherited case. As for me, OCD was inherited and not from any infections. I am sure my son received the OCD from me which I received from my dad. My son is NEVER sick. Doesn't even catch colds and has a very high immune system (the best I've seen).

 

Sorry for the soap box, but as a parent who has utilized ALL options and taken ALL routes, and has spent years researching, I feel its my duty to educate people who would like to know more. There is no reason to be scared for the newbies. I often donate time to different charities, and when I see parents with children that are parapalegics, I look into their eyes and I know that at any given moment, they would trade their childs condition for my childs condition in a quick second!

 

Jaylens anti-bullying website does have some facts about Tourette Syndrome there, but also has other definitions and disorders listed as well INCLUDING PANDAS. Our goal is united. No matter what you have, even if you have nothing, there is never a reason for bullying! Every child deserves to be treated with respect and dignity.

 

So I leave you with "Bullying No Way!"

 

Robin

www.JaylensChallenge.Org

Edited September 16, 2010 by JaylensMom

[nevergiveup]

Jaylen's Mom, I hope u are going to return to our site, after this post and give us some Q and A if u have time? I saw the previews of the show and ur son is an amazing child fighting against bullying. I can only imagine how emotional it must be for u to see him reach out and create change in this world. I am sure you have fought as hard as all of the parents on this forum for your son. I just want to clear up a couple of things, one PANDAS is an autoimmune condition and is also inherited, TS tends to start around 7 and pandas is usually started at a much younger age. Pandas waxes and wanes, many pandas kids have a kick ###### strong immune system, many pandas kids do not have strep titers, any infection can cause the trigger, pandas children have high Cam Kinase from Madeline Cunninghams Sydehams Chorea study and many with severe movement disorders have highly elevated AntiDopamine2 antibodies, this is where the body is overproducing antidopamine antibodies and they are disregulating dopamine causing all kinds of mood, movement psychiatric disorders. I am sure you have amazing docs, but TS is not a disease rather a group of symtoms and its cause is still unknown, however even the best docs speculate dopamine is involved. Yale recently found in autopsies that the TS patients have inflammation in their brains, leading one to believe this may be neuroimmune. I am glad u are so familiar with the TS science, I just wanted to get u up to date on the Pandas science, which someday may be one and the same. Your son is a hero, I feel he is an inspiration for all of our families. Thank you so much for coming here to post and I hope you will continue to visit, we can all learn a lot from each other! quote name='JaylensMom' timestamp='1284604387' post='84476']

Hello all on this Forum. I am Jaylens mom who was one of the subjects in "Tourette's Uncovered". By the way, its replaying right now as well as 3 more time in the week. I definitely recommend you all to watch it again as some of you are saying things about the show that are not true or maybe you missed some parts to the show.

 

I have several people and several issues to address here. I must say though, the young girl here at 14 years old is much brighter beyond her years.

 

For Airial95 and Fuelforall - Michael, who said that we didn't test for PANDAS? As the show stated, my son started with symptoms at age 2 and received a diagnosis at age 3. He just turned 10 so, that puts me at dealing with this for 8 years. I have a very good Neurologist and NeuroPhsycologist. We utilize the best of the best doctors from Duke University as well. My son has been tested for EVERYTHING under the sun. From Wilsons Disease, infections, Lyme, etc...His copper levels and mercury levels have been checked (which are high).

 

Regardless of what people say here, this show is NOT A NEW SERIES! It was ONE time show that is re-airing. For them to explain my sons whole life history to you and everything we've been through would have taken a 10 hour documentary. They really just don't have the time. We've also done specific Strep titers. All negative. We are aware that Strep can increase tics by a thousand times...so anyone near him with strep, he automatically gets a round of antibiotics.

 

The kids in this show are not the MOST SEVERE. As the14 year old young lady here stated to you, that is the nature of Tourette's and tics. The first boy Jonah was severe, but the 3 other boys were not. As a matter of fact, Colin, the last boy only has one tic - the shaking of his head. That's not severe at all. I think the show did a great job at showing you the different ways in which Tourettes can manifest itself. As for Jonah, he ABSOLUTELY needed the DBS surgery. His quality of life was severely compromised. The show stopped filming in July. That young man Jonah is tic free today.

 

As far as the rage, thankfully I do not have to deal with that. When that Defiant Disorder comes with Tourette's, it's called ODD. Tourettes mainly comes with ADHD, ADD, ODD, but most commonly OCD - which is what we deal with. Tourette's is a neurological disorder...OCD is also neurological. My son however, does have sensory and textures issues as well, but that is due to his ASPERGER's part of him.

 

Whoever stated that why do they just have one doctor on the show was incorrect. There were a total of 3 Neurologist on the show, including my own. Do you remember seeing me talk to her..she was doctor of another nationality, Dr. Qureshi. Dr. Albright was on also. WE don't just let our MD's or pediatricians throw us a diagnosis and thats it.

 

Yes, I'm the mother that deals with things more naturally. I have a total of about 40 supplements for my son, I control his diet, sugar, I use a chiropractor (who also has acupuncture), massage therapy, wears an EMF bracelet, etc... AGAIN, they simply don't have enough time to tell you all of this. But you have to think of this... I love my child like you love yours, why would I not do everything in my power to give him rest from the 24/7 ticcing? MEDICATION did not work for him! He weighs only 60 pounds and is not eligible for many meds, but the one's we did try, came with horrible side effects and didn't really work. If he becomes harmful to himself, I will use meds, but right now, he's a "twitchy boy" who is otherwise healthy. Why in the world would I use a drug on him that causes heart defects? He can twitch all day long but at the end of the day, if he died of heart failure,I would never forgive myself. Here's the bottom line though. THERE IS NO CURE FOR TOURETTE SYNDROME! If there was, I would have done it! What I do holistically is to try to manage the tics the best I can. Seriously though, whats the difference if you tic 5,000 times a day or 4,500? Even the DBS surgery isn't a cure. Its a temporary fix until that boy goes through puberty and it subsides (as it usually does around 19 years old).

 

Lastly, some combination meds do work if they meet the weight requirements. Marques from the show takes meds to keep him from swearing (which by the way only affects 10% of Touretters) and it works.

 

Bottom line, tics wax and wane. This wasn't a shock video. The only shocker was Jonah and he was really THAT bad. His parents made a wise choice for him. Nothing was scripted for ratings. These are our daily lives and most people with Tourettes we are getting feedback from, thought it did a great job at showing the true nature of TS. My son wasn't ticcing bad all the time. When they came back (when he was speaking to the school), he was on a wane period and not ticcing too much. We chose to open up our lives to all of you in order to educate, no one was paid, it would be nice if you would try to open your mind instead of bash these kids' parents.

 

Here's a tidbit also: with PANDAS mostly the tics do go away. When it is inherited TS....most likely doesn't. Also, they showed boys because Touretttes is 3 times more higher in boys and 75% worse than girls. With most girls, it isn't a true inherited case. As for me, OCD was inherited and not from any infections. I am sure my son received the OCD from me which I received from my dad. My son is NEVER sick. Doesn't even catch colds and has a very high immune system (the best I've seen).

 

Sorry for the soap box, but as a parent who has utilized ALL options and taken ALL routes, and has spent years researching, I feel its my duty to educate people who would like to know more. There is no reason to be scared for the newbies. I often donate time to different charities, and when I see parents with children that are parapalegics, I look into their eyes and I know that at any given moment, they would trade their childs condition for my childs condition in a quick second!

 

Jaylens anti-bullying website does have some facts about Tourette Syndrome there, but also has other definitions and disorders listed as well INCLUDING PANDAS. Our goal is united. No matter what you have, even if you have nothing, there is never a reason for bullying! Every child deserves to be treated with respect and dignity.

 

So I leave you with "Bullying No Way!"

 

Robin

www.JaylensChallenge.Org

[nevergiveup]

Paul, Look foward to seeing the website. Please do not be offended, on this forum we are all searching and helping. Pandas science continues to evolve daily as we speak. None of us will ever stop searching for new info and answers for our children, and it sounds like Jaylen's mom wouldn't either. Love to have her on to converse, many moms wonder whether their kids have ts or pandas on this forum. THanks for the website update!

 

The one boy on the show, who was speaking out against bullying, doesn't live to far from us. His mom was the one trying the natural remedies. I wonder if she ever thought about testing him for infection. What I thought was interesting though, was her conversation with their doctor about the potential of her daughter showing symptoms. How many times have we been on here going "I think my other kid has it now!!!"

 

 

 

Hi Folks,

 

I don't normally get involved in these kind of conversations but I skimmed across the posts and thought I would offer a little information for you.

 

Firstly, I am Paul. I am a co-founder of Jaylens Challenge. Jaylen being the person you referred to as the 10yr old boy speaking out against bullying on the show.

 

You made a point about questioning whether Jaylens mother Robin had ever thought about testing him for infection. Now think about it. If you had a 10yr old boy who from the age of 2yrs had been diagnosed - do you not think that you would have exhausted every single avenue in a bid to give your child some form of normality in life before reverting to a natural approach? Of course you would. However, it is not my job to speak on behalf of Robin as I know she will be keen to answer any questions you may have herself so I have invited her along.

 

In the meantime, if you want to head over to www.jaylenschallenge.org and read more about Jaylen and his campaign to educate people about bullying then you are more than welcome. Even better, why not register and join the forum there and you can ask questions directly to Jaylen himself. He loves nothing more than to help people understand.

 

Thanks for listening folks.

 

[airial95]

Jaylen's mom,

 

I hope you didn't take my post the wrong way. Of course many of us on here wondered if the parents checked for infection. For those of us dealing with PANDAS it's a natrual question, and one that the show didn't touch upon. Many of us on here have dealt with doctors/neurologists that were adamant that our children didn't have PANDAS, when in truth, they did - so I hope you weren't offended by the question.

No one was questioning your approach/path to dealing with his condition.

 

 

As for my remark about the ratings - in no way did I mean to imply that anything was staged for the show for ratings. I was responding to people's remarks as to why they would choose such seemingly "extreme" cases to highlight. Even though medically they are not all seen as extreme (as the teenager only has one tic, but also the rage issues) - the behaviors they exhibit are very noticable. My sons tics are very mild, and unless you are familiar with them, can go unnoticed by strangers. Someone like him would not have made for "good tv" to the producers of the show. It was a reflection of the producers and what they were looking for in cases to highlight than it was a disparagement on any of the families.

 

I commend you for all that you've done for your son, and being from Tampa, I have followed his campaign when he's been highlighted in the local papers and on the local news. My son is still a bit young to understand what is going on, and hasn't had to deal with bullying yet, but I have already saved Jaylen's page to our computer to show him when he's old enough to understand.

 

All of us on here are trying to do the best we can for our children, and to help other children like them - just like you and Jaylen. As others have said, we would love to have you come back and join us here, as we have many parents who are unsure if they are dealing with true TS or PANDAS. Your point of view would be invaluable and welcome.

[fuelforall]

Hello!

It's rather outrageous to assume I was "bashing" anyone. I certainly appreciate all the natural methods you used on your son, your approach is sound. My son has been mostly non responsive to antibiotics. I certainly agree most if not all medication does ZERO for tics and is not worth it.

 

But it is NOT outrageous to assume that for public education reasons and for just plain naivete, that parents would not be familiar with PANDAS and that doctors would not even bring it up. Even some place like Duke. There are people who know PANDAS in the medical field and there are the rest of them. Only in recent years and I mean VERY recent years, thanks in part to people here, has PANDAS even entered vocabularies in so called sophisticated urban areas. One of the top neuropsychs in my area when I mentioned PANDAS had to think about what condition that was and its symptoms. It's not exactly high priority in these circles and that's what this forum is a bout.

As Nevergiveup said, no strep titers and a healthy immune system do not mean no PANDAS. It sounds like except for the tics, your son is fortunate to not suffer from comorbid conditions. Most of us on this forum would LOVE that to be the case.

I would like to see my son's tics "wax and wane". The vocal ones have been around so long I was too stupid to acknowledge their existence and I consider myself educated and aware. I just thought he was being silly. What did I know?

 

When I watched the Tourette's tape, I wanted them all to get the children help somehow but I didn't see anyone say, we checked for PANDAS. Why? BEcause Mystery Diagnosis which just did PANDAS didn't point them in that direction. Or the parents' doctors didn't point them. I know it's not what the show was about, but it made me wonder if deep brain surgery on that other child could have been averted. COULD have been. You say "The young man Jonah is tic free" No he isn't, he is 90 percent improved. And how often will he go in to have his voltage checked? His fight/flight responses reminded me of Saving Sammy. Did they try high dose antibiotics?

 

I question any doctor who diagnoses Tourette's in a child of 3, frankly, they could just as easily diagnose PANDAS in a three-year old. Not very common and it's just as easy to diagnose a three year old with schizophrenia or bipolar disorder. My son's shrink suspects the tics are just Tourette's (just Tourette's, can you imagine?) but I don't buy it, I say PANDAS and so do Cunningham tests.

 

I'm sorry if I ticced you off. (ok, bad pun) But in the end, I echo what Nevergiveup said in her post to you. Keep up the good work, wish more parents knew what to do.

[P_Mom]

Jaylen's Mom,

 

I just wanted to say that I watched the show (even though I said I wouldn't ) ..and the end with your son saying how things are going to get better and "backfire".......and to "trust him" with a big smile absolutely brought tears to my eyes. That was such a strong, encouraging statement from a brave, adorable little boy!

 

 

I did also read your post and I must say that one thing jumped out at me pretty quickly as a red flag. Now, PLEASE, I am NOT saying your child has PANDAS......I am just presenting something. I have no doubt you have done and looked into everything you can possibly come up with...however, the members on this forum are also right....PANDAS is not well known and many docs can give you wrong info. and dismiss PANDAS on findings that are not diagnostic of PANDAS (strep titers, etc). So many kids get overlooked that have PANDAS based on absent strep titers...it is a shame! We have to knock down doors and search under every crack for help/answers to PANDAS. Unfortunately! Anyway, when you said your son is "NEVER" sick...well, it is when a parent of a child with TS/tics says this that, in my mind, a red flag appears. It is impossible for a child to never get sick ( and, I am sure you were exaggerating a bit) but, if he is out and about in the world, he does indeed get sick and exposed to all kinds of stuff daily. What we are finding out is that a child's symptoms of illness with this disorder can be tics and behavior changes...that is it...no typical physical signs what-so-ever. As Dr. k stated....."look for the tics, behavior changes...that is your child saying they are sick." A great immune system can also mean an over-reactive system. There have been numerous times my sons presented with an increase in tics/behaviors when kids around them were ill....sometimes it took a bit for us to find the culprit, but, there was always one found somehwere. My sons would usually NOT show any signs of illness...EXCEPT for the tics/behaviors. I could say my kids "never" get sick, too...but they do....their response is just different. Also, interesting you say your child's tics increase dramatically with strep/exposure. (definition of PANDAS)

 

Just something to think about. You never know! This is a PANDAS forum so you are gonna get a lot of feedback regarding PANDAS! It is engrained in our DNA now! We can't help it!

 

Has your son ever had any immune-modulating treatments? I am assuming he has had an immune work-up?

 

Anyway...thanks for sharing your story....you got one brave boy!

 

Kelly

Edited September 16, 2010 by P.Mom

[EmersonAilidh]

I typed out something HUGE & then it erased.

 

Good Lord, this poor woman is going to think we P.A.N.D.A.S. people are crazy. JaylensMom, if you don't think that your son's problem is P.A.N.D.A.S. or PITAND related... Then who are we to tell you otherwise?! I think that sometimes we get so caught up talking about symptoms & treatment that we often neglect to take into account the underlying cause... INFECTION. In a child with no history of infection, why would P.A.N.D.A.S. be logical?? I understand that a lack of infection does NOT rule P.A.N.D.A.S. out, but if he's operating within the Tourette's diagnosi & you have already ruled out P.A.N.D.A.S., then why would you be expected to go further down that road?? I think that some of us, including myself - misdiagnosed with Tourette's at eleven years old (& that's only the tip of the iceberg), have been made paranoid by our bad experiences with doctors. & trust me, I do not mean that negatively at all because with what some of us have gone through with doctors, teachers, insurance companies, & everything else.. We do have every reason to be a little paranoid about people being misinformed!! But with almost a decade of experience, I imagine that you are just as (if not more) well versed in Tourette's than most of us are in P.A.N.D.A.S. You don't get on the Discovery Health Channel without connections, people. So, all I'm saying is, if you have reason to believe that your son does not have P.A.N.D.A.S., good for you. "Good for you" always comes out sounding malicious or sarcastic, but I really mean it. None of us know him & can't say what it is, but we are all quick to pull the "P.A.N.D.A.S. trigger" when watching shows like this. I know even I do sometimes. No matter what it is that your son has, Thank you for being another brave Mom fighting for her kid & I hope that the both of you are doing well! <3

[P_Mom]

Emerson,

 

We talk about PANDAS/PITANDS to Jaylen's Mom because this is a PANDAS forum she posted on....it is to be expected.

 

Also....we are crazy!!

 

PANDAS does that to us!

[nevergiveup]

Emerson, I agree with your posts if we were talking politics, fashion, interior design, career planning, etc....... we are talking about a little boy, a very impressive little boy at that, whom may get additional help if the mother does not assume that Duke has all the answers. Which we all here on the forum ALREADY know. We are mothers first, and any child sufferring needs our help. So additional opinions are great, who knows if this open dialog may result in further investigation. (hint Cunnigham Test) We are all working to help not just our own children but all the children whom may be sufferring from Pandas. All opinions are valid, and we are all second guessing everyday and looking for answers. I am sure Jaylonsmom wouldn"t want it any other way.

[MomWithOCDSon]

Unfortunately! Anyway, when you said your son is "NEVER" sick...well, it is when a parent of a child with TS/tics says this that, in my mind, a red flag appears. It is impossible for a child to never get sick ( and, I am sure you were exaggerating a bit) but, if he is out and about in the world, he does indeed get sick and exposed to all kinds of stuff daily. What we are finding out is that a child's symptoms of illness with this disorder can be tics and behavior changes...that is it...no typical physical signs what-so-ever. As Dr. k stated....."look for the tics, behavior changes...that is your child saying they are sick." A great immune system can also mean an over-reactive system. There have been numerous times my sons presented with an increase in tics/behaviors when kids around them were ill....sometimes it took a bit for us to find the culprit, but, there was always one found somehwere. My sons would usually NOT show any signs of illness...EXCEPT for the tics/behaviors. I could say my kids "never" get sick, too...but they do....their response is just different. Also, interesting you say your child's tics increase dramatically with strep/exposure. (definition of PANDAS)

 

Just something to think about. You never know! This is a PANDAS forum so you are gonna get a lot of feedback regarding PANDAS! It is engrained in our DNA now! We can't help it!

 

Kelly

 

I can second Kelly's statement.

 

My DS13 was "never sick," either. Week after week in the winter-time, at preschool, kindergarten and first grade he'd come home with a form letter from school, saying that another child in the class had been identified as having strep, so watch for fever, sore throat, etc. DS never showed any sign, never even felt "off," but DH or I would come down with a classic, painful case of strep throat within 7-10 days following the notice. That was until, of course, DS started washing his hands 40 times each day and was diagnosed with OCD. Because he never tested positive for strep via throat culture, we went for another 6 years thinking we were dealing with OCD, not PANDAS OCD. And then he "fell off the edge of the planet" in terms of the magnitude of his OCD about one year ago, within 4 weeks of the one and only strep notification we've ever gotten from his junior high, and we couldn't get him back to the way he'd been before: OCD, but functional.

 

So, we went with high-dose antibiotics and he began to "come back," slowly but surely. We continue with standard OCD treatments, too, convinced that those 6 years without PANDAS intervention probably have played a role in his neural pathways so antibiotics alone probably will not do the whole job. But they have definitely become an important part of the treatment protocol.

 

All us crazy ( ) PANDAS parents are saying is . . . what's the harm in investigating it? You've upturned every other stone trying to find the best treatment for Jaylen, so what's one more? And think of the possibilities!! I will be forever grateful that my family, despite 6 years of being told by very reputable professionals that DS had OCD, "only OCD," and that was that, found PANDAS, found this supportive forum, and gave PANDAS treatment a shot. I'd hate to think where we might be today if we hadn't.

[JaylensMom]

Hi NeverGiveUp, We've had Jaylens brain checked...no swelling. We also have MRI's done quaterly under General for any changes. I do understand a lot about PANDAS and do understand that alot of it happens earlier on, but it doesn't come about until "triggered" by something, correct?

 

Just like some children do not display ticcing until triggered by a side effect to meds? All I was trying to say is that there was such a negative tone to this thread about the show as if it were scripted, not real, or a shock video. These really are our daily lives. I also got the impression that others were screaming out INFECTION as if we don't constantly have our kids checked and aren't consantly looking for answers.

 

As well, from what I do know about PANDAS is that when tics are present, they tend to subside and go away after a period of time. With true Tourettes, the child has NO relief from ticcing (only when sleeping). The tics are constant (every 30-45 seconds). We don't get hours or days of breaks from them as PANDAS can. Right now we have about 30 tics that just keep interchanging. One leaves and 3 more come. I don't pray for certain tics to leave him anymore, as it might be replaced with one much worse.

 

Thank you for welcoming me to your board and educating me further into the PANDAS science portion.

 

 

Have a great evening.

 

Robin