kclynn Posted August 23, 2012 Report Share Posted August 23, 2012 My son saw a neurologist who thinks he has Tourettes. It was a very long and detailed visit. I have a high confidence in the Neuro, though he does not know a lot about POTS. My son started the Jerks and Tremors at nearly the same time, very suddenly, as he showed Pots Symptoms. The jerks had been very seizure like. The Dr. said he has probably had this mildly (and there are some things that would validate this) for a long time but that the stress of the Dysautonomia brought it out significantly. My son had some tremors in the office during the appt. and the Dr. said those were tics. The past 9 months they have been better but can still be significant, though he has been on Clonidine, which I understand helps tics as well. He hasn't had the seizure looking episodes but can lay on the couch nightly and jerk for 20 minutes or so, sometimes intermittent, sometimes a lot. It seems to me that Tourettes seems to come from the same neurotransmitters that I have read on here that some with Dysautonimia have problems with, dopamine, serotonin, norepinephrine, and choline. So is there a connection or and unfortunate coincidence.I thought I would post and ask if anyone had any knowledge or opinion Quote Link to comment Share on other sites More sharing options...
Chaos Posted August 23, 2012 Report Share Posted August 23, 2012 Don't know much about it other than having seen a couple patients with it in the past. Just this past weekend I read the book "against medical advice" by James Patterson which is the story of a 17 year old boy and his struggle with Tourettes. I was struck throughout the story with how many of the drugs they were putting him on were the same ones I've had tried on me. Although, I guess, whenever you're talking about neurotransmitters, there are only so many that they know about that they can try to effect at this point so it would make sense that there would be a lot of overlap.Glad you're getting some answers but that's a really tough diagnosis. Good luck! Quote Link to comment Share on other sites More sharing options...
kclynn Posted August 23, 2012 Author Report Share Posted August 23, 2012 He doesn't have loud and disruptive vocals, his vocals would be more a soft sound made when actually having the worst of his jerks, so he is fortunate to not have to deal with those symptoms during school, and he actually rarely has them at school, or is mostly able to cover them with a purposeful movement. We thought the Neuro was awesome, and he didn't recommend any other meds. Quote Link to comment Share on other sites More sharing options...
Chaos Posted August 25, 2012 Report Share Posted August 25, 2012 That's good that he's at least not having to deal with the loud disruptive vocalizations on top of everything else he's having to deal with. So hard to have a kid struggling with these ongoing health issues that you can't do much to help other than be support for them. Tough on all of you. How's your son dealing with it?Really glad you found an awesome Neuro. That's always half the battle!! Quote Link to comment Share on other sites More sharing options...
kclynn Posted August 27, 2012 Author Report Share Posted August 27, 2012 Today I am feeling so sad. My son was so depressed last night having potsy symptoms with all those jerks. WHY does he have to have this crap piled up on him?? Could that Dr. be wrong? He will be 17 this week. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted August 27, 2012 Report Share Posted August 27, 2012 Hugs go out to you! and Could the doctor be wrong? From my experience... YES! The only thing I can say, is keep doing your own research and looking for answers. Without me doing my own research, my son would have never been diagnosed with POTS or MCAS. All our appointments have been self referred.We were hoping our son could return to school his senior year, and as of right now that does not look very promising.Stay strong (easier said than done I know).Christy Quote Link to comment Share on other sites More sharing options...
Friedbrain Posted August 27, 2012 Report Share Posted August 27, 2012 Aw, so sorry to hear about your son! There is a very good newsletter mailed out that contains articles written by Tourette's kids. May be inspiring and helpful for your son, idk:http://www.tsa-usa.o...outh/Youth.htmlI haven't researched Tourette's in a long time to know what the latest info is, but from what I used to read, that sounds like an unusual presentation. Often, it shows up at an early age and peaks in mid adolescence, sometimes though not always going away as the child ages. I have it in my family tree, and I personally experienced the motor tics in elementary school (but not vocal tics, so was not labelled TS) which went away. My son was in preschool when he started having this "flyswatter tongue" and had a perpetual irritated spot next to his lip from licking it. Pdoc wasn't concerned. Then ds started throat clearing in early elem: doc thought it was postnasal drip from a cold. Etc. He was eventually diagnosed with TS because of the a) variety and b they lasted over a long period of time. Didn't interfere with school initially so was not medicated until middle school when the throat clearing did become noticable at school. He went on Tenex, which helped; weaned off completely in 9th grade and hasn't had a problem since then with tics (he's in 11th gr).Fwiw, I have a seizure disorder and am the one with the diagnosis of dysautonomia. I also have essential tremors brought on by (good or bad) stress, where my hands shake at rest. Also, there are nights where I am extremely twitchy. I don't have a diagnosis for it, but it's not TS. Sounds or movement can make me spontaneously startle. In TS, there's an urge, a NEED to twitch. Also, there are nights (I think it's related to when I've had a day of stress) when I jerk something horribly when trying to fall asleep (numerous times a night). The worst time, during a prep for a colonoscopy (so SEVERE physiological stress), I jerked and couldn't move or talk for a few seconds. I looked it up and it sounds like myoclonus, and maybe that time even crossed over to a seizure.I'm glad you've found a good neuro for your son, though. Whatever the diagnosis, it's rough when our kids are distressed and sick! Hugs! Quote Link to comment Share on other sites More sharing options...
Kat Posted August 28, 2012 Report Share Posted August 28, 2012 Just thought I would mention that I also have myoclonus...which is a jerky tremor.Curious, KCmom if you live in KC. If so where does your son get his medical treatment?Kat Quote Link to comment Share on other sites More sharing options...
kclynn Posted August 28, 2012 Author Report Share Posted August 28, 2012 Thanks Christy and FB. It helps to feel not so alone! Quote Link to comment Share on other sites More sharing options...
Sealmomof2 Posted April 18, 2022 Report Share Posted April 18, 2022 @kclynn, found this thread via a Google search. My teen has the EXACT same issues.. started at the same time as POTS. We’ve gotten nowhere with a diagnosis. They say it’s stress in addition to the dysautonomia. Can you give me more information on the Tourette’s diagnosis?? Quote Link to comment Share on other sites More sharing options...
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