MomWithOCDSon Posted September 6, 2010 Report Posted September 6, 2010 Some of us might be interested . . . Discovery Health is starting a new reality series called "Tourettes Uncovered." It is supposed to follow four families with children suffering from tics. I checked my cable guide, and it begins next Monday evening (9 p.m. our time here in the Midwest), but it looks as though it repeats throughout the week, leading up to the next episode the following Monday.
nevergiveup Posted September 6, 2010 Report Posted September 6, 2010 What are they uncovering? I wish they would keep these type of reality show with adults only. Our children deserve better. Some of us might be interested . . . Discovery Health is starting a new reality series called "Tourettes Uncovered." It is supposed to follow four families with children suffering from tics. I checked my cable guide, and it begins next Monday evening (9 p.m. our time here in the Midwest), but it looks as though it repeats throughout the week, leading up to the next episode the following Monday.
keeptrying Posted September 8, 2010 Report Posted September 8, 2010 What are they uncovering? I wish they would keep these type of reality show with adults only. Our children deserve better. Some of us might be interested . . . Discovery Health is starting a new reality series called "Tourettes Uncovered." It is supposed to follow four families with children suffering from tics. I checked my cable guide, and it begins next Monday evening (9 p.m. our time here in the Midwest), but it looks as though it repeats throughout the week, leading up to the next episode the following Monday. I completely agree. They will be showing extreme cases no doubt and that is not the way it is for all ts/tics kids. I hope this one is different.
P_Mom Posted September 8, 2010 Report Posted September 8, 2010 (edited) I saw that advertised Monday....I am choosing not to watch....I have enough anxiety in my life! Edited September 8, 2010 by P.Mom
Fixit Posted September 8, 2010 Report Posted September 8, 2010 I saw that advertised Monday....I am choosing not to watch....I have enough anxiety in my life! I can't handle it either..
MomWithOCDSon Posted September 9, 2010 Author Report Posted September 9, 2010 The behaviors in our household are strictly OCD, so the Tourettes doesn't hit as close to home for us as it might for some of you. I plan to watch, at least some of it, if for no other reason than to perhaps catch an allusion to PANDAS or some other infectious agent trigger. I'll post afterward if there's anything worth telling.
EmersonAilidh Posted September 9, 2010 Report Posted September 9, 2010 When I first started ticcing it was honestly a comfort to watch "True Life : I Have Tourette's". For some of us kids it's nice to know we're not the only ones, even if they do show extreme cases. I had never ever seen anyone with Tourette's or anything of the sort before.
keeptrying Posted September 9, 2010 Report Posted September 9, 2010 When I first started ticcing it was honestly a comfort to watch "True Life : I Have Tourette's". For some of us kids it's nice to know we're not the only ones, even if they do show extreme cases. I had never ever seen anyone with Tourette's or anything of the sort before. Emerson, I am new to the forum and I have read some of the posts that you have commented on. It was so nice to hear from someone that is actually dealing with these issues personally. I have a 9 yr old and I am worried as she gets older and if this does not get under control that her life will be impacted in such a way that I may no longer be able to help. I hope your experience with this is better than I fear. You seem older than your years and I imagine can handle this and then some. Sounds like you have had a diagnosis for sometime, now lyme. How are you treating your lyme and what got you to test for it? I am trying to decide whether or not to have my dd tested. Any advice for us parents? Forgive me if you have already done this, as I said, I am new.
EmersonAilidh Posted September 9, 2010 Report Posted September 9, 2010 When I first started ticcing it was honestly a comfort to watch "True Life : I Have Tourette's". For some of us kids it's nice to know we're not the only ones, even if they do show extreme cases. I had never ever seen anyone with Tourette's or anything of the sort before. Emerson, I am new to the forum and I have read some of the posts that you have commented on. It was so nice to hear from someone that is actually dealing with these issues personally. I have a 9 yr old and I am worried as she gets older and if this does not get under control that her life will be impacted in such a way that I may no longer be able to help. I hope your experience with this is better than I fear. You seem older than your years and I imagine can handle this and then some. Sounds like you have had a diagnosis for sometime, now lyme. How are you treating your lyme and what got you to test for it? I am trying to decide whether or not to have my dd tested. Any advice for us parents? Forgive me if you have already done this, as I said, I am new. I was told that I had P.A.N.D.A.S. for the first time about three or four years ago, although my symptoms have been around for about eleven. They really reared their ugly heads a little less then five years ago though, less than a year post-tick bite. I don't have DIAGNOSIS for Lyme, I have a positive Lyme AB Screen. That actually caused a little conflict on the forum, hahah. I really just chose to be tested for it because I had seen so many moms talk about it on the forum. In all honesty I didn't even know that Lyme was tick related until the doctor that tested me for it asked about my history with ticks. I don't think that there would be any harm in testing her. I'm at the age where needles just don't faze me after the years but I can imagine a nine year old not being so receptive. After a while we P.A.N.D.A.S. kids learn that they're here to help though, haha. No need for forgiveness! I joined this forum to help. I love getting to talk to new parents. I can't really say "Well, this is what you should do.." but if you ever have a specific question don't hesitate to send me a PM! Helping others makes me happy. It feels like getting closer to helping myself. The only thing I really have to say is.. BE PROACTIVE! Besides that, welcome to the forum/family!
keeptrying Posted September 9, 2010 Report Posted September 9, 2010 When I first started ticcing it was honestly a comfort to watch "True Life : I Have Tourette's". For some of us kids it's nice to know we're not the only ones, even if they do show extreme cases. I had never ever seen anyone with Tourette's or anything of the sort before. Emerson, I am new to the forum and I have read some of the posts that you have commented on. It was so nice to hear from someone that is actually dealing with these issues personally. I have a 9 yr old and I am worried as she gets older and if this does not get under control that her life will be impacted in such a way that I may no longer be able to help. I hope your experience with this is better than I fear. You seem older than your years and I imagine can handle this and then some. Sounds like you have had a diagnosis for sometime, now lyme. How are you treating your lyme and what got you to test for it? I am trying to decide whether or not to have my dd tested. Any advice for us parents? Forgive me if you have already done this, as I said, I am new. I was told that I had P.A.N.D.A.S. for the first time about three or four years ago, although my symptoms have been around for about eleven. They really reared their ugly heads a little less then five years ago though, less than a year post-tick bite. I don't have DIAGNOSIS for Lyme, I have a positive Lyme AB Screen. That actually caused a little conflict on the forum, hahah. I really just chose to be tested for it because I had seen so many moms talk about it on the forum. In all honesty I didn't even know that Lyme was tick related until the doctor that tested me for it asked about my history with ticks. I don't think that there would be any harm in testing her. I'm at the age where needles just don't faze me after the years but I can imagine a nine year old not being so receptive. After a while we P.A.N.D.A.S. kids learn that they're here to help though, haha. No need for forgiveness! I joined this forum to help. I love getting to talk to new parents. I can't really say "Well, this is what you should do.." but if you ever have a specific question don't hesitate to send a PM! Helping others makes me happy. It feels like getting closer to helping myself. The only thing I really have to say is.. BE PROACTIVE! Besides that, welcome to the forum/family! tried to pm you but it would not accept it... Hi Emerson, thanks for responding to my post so quickly. I wanted to ask you do you only have tics or are there other symptoms that you experience? My daughter has only motor and on occasion vocal tics. She had some slight OCD type behaviors when she was very young but not anymore. You mention that your symptoms "reared their ugly little heads" around age 10 (?). Was that when they were at their peak in severity? I am asking because my dd's tics are the highest they have ever been to date and she is not far from that age. I understand that tics can peak around 10-11 then start to subside after. Has that happened for you? Also, with puberty, did your symptoms get better or worse (sorry if that is too personal..)? I guess I just want to know what might be ahead of us. I am still not sure if this is pandas, lyme or TS. By the way, you seem like a very mature special young person. I hope your parents are proud of you.
EmersonAilidh Posted September 9, 2010 Report Posted September 9, 2010 My inbox was full, sorry!! I have to wake up at 5:30 AM though, so I PROMISE that I will PM you tomorrow! I'm normally more prompt, but sleep is calling. Goodnight! <3
MomWithOCDSon Posted September 14, 2010 Author Report Posted September 14, 2010 Well, I must say the show has been interesting, to me, at least. But I will say that it has been hard to watch without screaming at the screen, "Check for infection! Check for infection!" What was an eye-opener for me were the commonalities between these kids diagnosed with Tourettes and so many of the behaviors I see in my son whom I've generally understood to manifest 99.9% OCD. I also didn't realize that physicians seem to think that "rages" can be an inherent part of TS. Really? Or is that the PANDAS surfacing? Finally, one boy (10 years old) wound up having Deep Brain Stimulation surgery because his TS was so severe; the DBS significantly reduced his tics. The doctor they interviewed for the documentary is a Dr. Cathy Budman. Anyone know of her? Maybe she needs to get a few PANDAS letters!
fuelforall Posted September 14, 2010 Report Posted September 14, 2010 PANDAS PANDAS PANDAS PANDAS PANDAS, COULDN'T THEY AT LEAST CHECK AND DO SOME HOMEWORK????? Deep brain stimulation surgery, Jeez, is he going to have voltage checks the rest of his life? Why do they talk to one doctor? Laziness? Budget? All very sad. That Queens boy ended up at a school my son may end up going to. I just wish MD's weren't so clueless. All of them said MEDS were no help for tics. Period.
Fixit Posted September 14, 2010 Report Posted September 14, 2010 I also didn't realize that physicians seem to think that "rages" can be an inherent part of TS. Really? Or is that the PANDAS surfacing? Thank God i didn't watch it!!!! But Rages!!!!! ok...when i am sick...GET AWAY...... and ds is one cranky boy at onsets.... and like a dan doc has helped me realize...like with autistic kids..the vocal they find are often associate with some gut issue...but science hasn't been able to figure that out...and if a kid was never healthy..how would they know if they are sick... and even as an adult..sometimes you don't feel good but you don't know why... and if there is a raging infection, i don't know of many who are nice to be around... Am I making my point clear!!...i know i sound foggy alot
EmersonAilidh Posted September 14, 2010 Report Posted September 14, 2010 I don't think that I liked it!!! The whole time I was thinking... "Where are the girls??" Why would they choose four boys?? Also, I understand putting worse cases on television, but my God. Poor new parents who undoubtedly tuned in to that show for a little information only to hear about how medication shows no results for Tourette's.... When more often than not it does. I think they should have showed some more standard, run of the mill approaches & stories as well instead of radical options like Deep Brain Stimulation & (this might tick some people off...) lazy options like just monitoring your child's diet with symptoms that severe. Obviously, typical cases wouldn't make for good television, but for some reason I just felt that the show was lacking. :/ One thing I will say though is that when I was operating solely on the diagnosis of Tourette's (about a year. Before I had ever even heard of P.A.N.D.A.S.), rages were accepted as a symptom. I used to be as bad, if not worse, than most of the children on that show. Until you've experienced tics like we have, in particular those bodyrocking, explosive, way-out-there ones, you can't understand just how frustrating it is. & obviously, you can't get PO'd every single time you tic. For me, I compulsively counted to eight after every twitch. If I do say so myself, twitching is one of, if not THE single most frustrating symptom that I've dealt with. Every tic is a reminder of how your body has failed you, every twitch is a reminder of all the eyes watching you when all you want to do is sit still & be normal. All of that stress alone is enough to cause rages in an otherwise psychiatrically healthy kid.
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