Tourettes Uncovered

[Fixit]

Thank you Emerson..i think about that alot for my ds

[lmkmip67]

I watched it too, and frankly it freaked me out and I could not sleep most of the night. I am two weeks from Ian's appointment with Dr. B in CT. So we don't have a diagnosis yet. His 3 or 4 tics seemed to have calmed down quite a bit in the past 3 weeks. I don't notice the vocal one at all now. At first I thought that was a good sign and likely meant PANDAS. Until I saw this show and it said Tourettes starts out that way, transient. I shouldn't have watched it. I cried, hoping that won't be the outcome for Ian. He is so OCD as well as ticks and some tantrums. Not sure I can call them rages. But there are times he does rage, just not to the point of breaking things or hitting anyone. Then again, he is only 7.

[tantrums]

I liked the way they showed a variety of symptoms in each of the children. What scared me, since we are still bouncing between the two diagnosis, is that so many of the parents said "it started with eye blinking at age 7". This is what the doctor at CHOP was telling me, what we are likely to be facing Very very scary and I also had trouble sleeping last night.

 

I don't think it was a bad thing that they showed kids that were so severe. That's the way it goes. Not to sound like a pot stirrer here, but what about Mystery Diagnosis? Wouldn't Sammys case being shown be likely to lead others to think some of our kids can't have PANDAS if they aren't as severe as Sammy? He was surely a very severe case and the only one shown on that show.

[EmersonAilidh]

lmkmip67 ~ Let us know how your appointment goes! I wonder why so many kids with Tourette's (& not P.A.N.D.A.S.) also have ADHD, OCD, & anxiety/emotional issues. Hm... Makes me wonder how much of it really is just stress from an initial symptom snowballing & making other minor things big issues. Know what I mean?? Tourette's is very treatable & pretty much totally accepted. Under that diagnosis I never once had a doctor look at me funny & if anything the Tourette's docs main flaw is being TOO proactive, which although not great is much better than the alternative, if you ask me.

 

Tantrums ~ I'm sorry!! That made me sad. :/ I hope you & your little one find answers & peace soon!

& oh, I understand that that's how it works! No one (besides us, hahah) would want to tune in to watch a kid with a few little tics here & there. Showing severe cases like that brings attention to the disorder, gets it recognized. Which goes for Mystery Diagnosis, as well. I remember telling all of my friends to watch it & all of them just being like "You're not like that..." & me having to explain that I used to be, but not all P.A.N.D.A.S. kids reached that point. BUT, instead of them seeing someone more functional like myself & then forgetting about it, Sammy's heartbreaking story, & therefore P.A.N.D.A.S., is still with them. & while Tourette's is much more well known, I still understand that they want their message to stick.

 

With all of our different stories & symptoms I bet we could just have our own little sub-Mystery Diagnosis show, hahah.

[lmkmip67]

lmkmip67 ~ Let us know how your appointment goes! I wonder why so many kids with Tourette's (& not P.A.N.D.A.S.) also have ADHD, OCD, & anxiety/emotional issues. Hm... Makes me wonder how much of it really is just stress from an initial symptom snowballing & making other minor things big issues. Know what I mean?? Tourette's is very treatable & pretty much totally accepted. Under that diagnosis I never once had a doctor look at me funny & if anything the Tourette's docs main flaw is being TOO proactive, which although not great is much better than the alternative, if you ask me.

 

Tantrums ~ I'm sorry!! That made me sad. :/ I hope you & your little one find answers & peace soon!

& oh, I understand that that's how it works! No one (besides us, hahah) would want to tune in to watch a kid with a few little tics here & there. Showing severe cases like that brings attention to the disorder, gets it recognized. Which goes for Mystery Diagnosis, as well. I remember telling all of my friends to watch it & all of them just being like "You're not like that..." & me having to explain that I used to be, but not all P.A.N.D.A.S. kids reached that point. BUT, instead of them seeing someone more functional like myself & then forgetting about it, Sammy's heartbreaking story, & therefore P.A.N.D.A.S., is still with them. & while Tourette's is much more well known, I still understand that they want their message to stick.

 

With all of our different stories & symptoms I bet we could just have our own little sub-Mystery Diagnosis show, hahah.

 

 

Your very wise and make a very good point about the shows.

[tantrums]

I think you said what I was trying to say better than me Emerson. I didn't want to sound like I was criticizing the Mystery Diagnosis show. I thought it was VERY well done. And one person is the format of the show. But you see what I meant. I had some family members see that, see the really serious issues Sammy had and say "oh but Carters not like THAT!". While others though - caught some of the similarities and cried with me

 

I thought I knew TS before this past year. I was somewhat offended when the first neuro said that is what my son had. I thought I knew what it all entailed. I have since been studying night and day on it. My DH knew even less! His first response was that Carter isn't belting out swear words. So there IS a lot to be learned about TS. And it IS frightening how similar they are!

[airial95]

As usual, Emmerson is wise beyond her years. The bottom line, is that these people are making TV shows - which need to get ratings. You don't get ratings showing mild cases, you get ratings (and thereby advertising $$$) by showing the extreme. But at the same time, while it freaks us all out to see those extremes, it shoul also give us some comfort when they show how they've survived and are succeeding in life even through the challenges. It should also give us comfort to know - it could be worse! (I know, small comfort - but some of us will take what we can get!!)

 

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!!!"

 

As for the Mystery Diagnosis episode. We got some of the "he's not that bad" - but mostly, we got "we had no idea that's what you've been dealing with!" I had read the book previously, and concluded that we weren't anywhere near as bad as Sammy. And while I still don't think we're even close to that level, seeing the visual representation of his case made us realize we're closer to that than we originally thought.

 

Personally, I'm grateful for all of these programs that highlight the challenges of OCD and Tourettes - no mater how dramatized they are. Because it opens up to the general public what our kids are going through, and it gives them a frame of reference when we're trying to explain PANDAS to them.

[purple66p]

I'm so glad they did the Mystery Diagnosis show! My oldest daughter (22) happened to catch it (she's away at college.) Up until now, she's been pretty impatient with my son. She has told him that the treatment for OCD is to learn to get over it. After seeing the Mystery Diagnosis show she called me and asked if ds might have PANDAS. We were finding out about the possibility about the same time and I had not told her yet. So, it was very gratifying that her mind is becoming more open to her little brother actually being sick and not just obnoxious! Maybe she caught the Tourette's show also--she's kind of a medical TV show junkie.

 

Note: please don't take my comments about my dd as criticism. I'm sure you all know how difficult this disease is on the other kids in the family! He first became sick when she was about 14, which is a really difficult time for her parents to become distracted and overwhelmed by another kid in the family. I worry all the time about how my son's illness has affected his two big sisters!

[fuelforall]

Hi Emerson

 

Had to chime in a bit here, you said,

 

I wonder why so many kids with Tourette's (& not P.A.N.D.A.S.) also have ADHD, OCD, & anxiety/emotional issues.

 

Um... I believe most PANDAS kids DO have all of those things or two thirds of them. My son has major ADHD, less but a little OCD and major anxiety emotional issues.

I believe it's not uncommon, if you look at our list of symptoms Buster laid out some time ago.

 

That's why I started screaming PANDAS because all of those kids needed to at least be tested before their parents and MDs started jumping to conclusions.

 

Best,

Michael

[tantrums]

I do agree that kids presenting with TS should be tested for any of the infections that can cause pandas. For us personally though, I can't help but wonder if we've gone backwards with my son. Diagnosed PANDAS when he really has TS. It is wonderful and I'm sure there is a HUGE percentage of kids that have treatable infections.

[MomWithOCDSon]

I do agree that kids presenting with TS should be tested for any of the infections that can cause pandas. For us personally though, I can't help but wonder if we've gone backwards with my son. Diagnosed PANDAS when he really has TS. It is wonderful and I'm sure there is a HUGE percentage of kids that have treatable infections.

 

Tantrums --

 

What if it's not an exclusive answer either way? What if 1) your kid is genetically predisposed to TS or OCD and then 2) that genetic predisposition is triggered by something? Maybe an infection?

 

Listening to Dr. Kenneth Boch talk about autism and how our kids become genetically susceptible to environmental toxins because their immune systems have become compromised -- sometimes in utero and sometimes after birth -- and how this can lead them to be "genetically prediposed" to immune modulation issues, etc. . . . well, that combined with all the PANDAS research and personal experience has really gotten me thinking.

 

In our case, we contend mostly with OCD. If you read and/or watch any of the popular "OCD shows" on TV these days, you'll hear people recall that their OCD was triggered by some traumatic event . . . death of a loved one, for instance. But in our DS's case, there's been no emotional trauma at all; we've not lost anyone close to him, not even changed homes or school districts or anything. I can see the genetic predisposition to OCD on both sides of our families, though no one has it to the degree my DS has manifested it. So what triggered it, and what made it grow to such mammoth proportions over time?

 

He's tested with high strep titers on two documented occasions, so I feel as though we have our answer.

 

So, how are we treating it? We're hitting with all weapons. Abx, I feel certain, put him in the best spot he's been in since his OCD began to rage just over a year ago. But it hasn't brought him completely around, so we're using therapy, some supplements and even a low-dose SSRI to finish the job. That won't be the answer for everyone, obviously, but it does seem to be working for us.

 

Just a few thoughts . . . .

[Chemar]

I did not watch this show (intentionally) so cannot comment on it

 

but I do agree that it is very possible to have both a TS AND a PANDAS or PITANDs dx. and am not sure why these are sometimes being presented as mutually exclusive?

 

kids with TS genes do also get infections............

[nevergiveup]

Emerson, Were u ever treated for TS, and did it help with tics? Do u take any medication for tics now? From some of your posts I have read you have an active social life and lots of friends and a boyfriend. Can you offer any advise to my 14 year old on how best to handle this illness, what to tell her classmates when they ask about her tics? Thank you!

lmkmip67 ~ Let us know how your appointment goes! I wonder why so many kids with Tourette's (& not P.A.N.D.A.S.) also have ADHD, OCD, & anxiety/emotional issues. Hm... Makes me wonder how much of it really is just stress from an initial symptom snowballing & making other minor things big issues. Know what I mean?? Tourette's is very treatable & pretty much totally accepted. Under that diagnosis I never once had a doctor look at me funny & if anything the Tourette's docs main flaw is being TOO proactive, which although not great is much better than the alternative, if you ask me.

 

Tantrums ~ I'm sorry!! That made me sad. :/ I hope you & your little one find answers & peace soon!

& oh, I understand that that's how it works! No one (besides us, hahah) would want to tune in to watch a kid with a few little tics here & there. Showing severe cases like that brings attention to the disorder, gets it recognized. Which goes for Mystery Diagnosis, as well. I remember telling all of my friends to watch it & all of them just being like "You're not like that..." & me having to explain that I used to be, but not all P.A.N.D.A.S. kids reached that point. BUT, instead of them seeing someone more functional like myself & then forgetting about it, Sammy's heartbreaking story, & therefore P.A.N.D.A.S., is still with them. & while Tourette's is much more well known, I still understand that they want their message to stick.

 

With all of our different stories & symptoms I bet we could just have our own little sub-Mystery Diagnosis show, hahah.

[tantrums]

My son is DX with both PANDAS and TS by several doctors. I understand the predisposition and in my son's case, it was definitely started with an illness. And of course that can happen with either. My biggest problem right now is, you treat one and it aggravates the other - as in steroids.

[EmersonAilidh]

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?