JaylensMom

You are such a wise 15 year old! You need to become a doctor and find cures for all of our kids whether it's PANDAS, Tourette, ASP, or Auties! (And as one person said, this is a Pandas forum, but I only came over here because someone told me you all were afraid to watch the show). How can a bunch of crazy PANDAS moms be afraid to watch a show about TS? Especially when we are even crazier? ;o)

Hi Kelly: I didn't mean that Jaylen's tics increase dramatically with strep/exposure personally. What I was referring to is that our doctor (who is well versed in PANDAS) has me always on my toes about it. She states that Strep "can" increase the tics into exacerbation so we are very cautious if he is near anyone with strept (although he has never had it). If at anytime he is ever around someone who is strep positive, we put him on antibiotics immediately. Yes, Jaylen does get sick, but really...not sick sick like my daughter. If he's exposed to something he gets a very mild fever for a day and then he is done. He never gets that nasty cough, stuffy nose, stomach viruses...not really anything (and he constantly has his hands in his mouth due to a certain tic). I put that on his many many vaccines as a baby. Jaylen was born premature and had way more vaccines than usual (yes, I've thought about the vaccines as being the culprit of high mercury and causing TS (broad spectrum autism as he also has Asperger's and severe OCD)); however, for his first 2 years of life, he lived them in and out of the hospital, constantly sick. They pumped him full of vaccines and he hasn't really been sick since. His asthma even disappeared! I do pay attention to his ticcing (I'm very in tune with his body) and I even keep track of their rhythms and cycles. They are so predictable that I can tell you now (after 8 years of it) exactly when it will exacerbate - I just can not tell you what new tics will come. This is of course without any outside stressor. Unexpected stressors in his life (being bullied) can and will cause an exacerbation all on its own. Thank you for your kind words about Jaylen. Although he has his multitudes of disorders, I do try and protect him and keep his image of himself on the upswing. I do have a happy boy most of the time. He realizes that he must help others and it was his idea to do so. Thanks, Robin

I hear what you are saying, but many of our children have been checked...they just didn't mention it. Jonah from the story is now "tic free" due to the surgery. In the story, his last update was just one month post surgery (when he was 90% - that was June). However, he is tic free due to being controlled by the electrodes. If the equipment were turned off, tics would ocme back. I find it odd that your son has had vocal ticcing for a very long time, how long is that? My neurologist is very pro PANDAS (she is not from this country though and thus not mainstream). Most of the children I know with PANDAS, the tics come and go as in they don't wax and wane, but they literally start and stop for periods of time. As in completely stop for a good while and then start up again at an illness onset, etc.. We don't get that with TS..they never stop. Even into adulthood when they wane down alot, they actually never stop. If they do...I think they were PANDAS misdiagnosed. With true TS, they never totally stop, the adult just learns how to mask them better and of course everyone know post puberty they lessen. My son (due to our Neuro being very thorough and well educated) had received high doses of antibiotics and nothing changed. We now see a holistic nutritionist as well and try to deal with gluten, wheat, etc... Heck I've tried everything!

Thank you so much for your clarification and warmness. Yes, everyday is one day at a time. If we can help another, we are so happy to oblige. Thanks for the Love and for supporting our endeavor to educate. xo

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

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