Here We Go Again???
Question:
Cheli asked to speak with me privately yesterday evening because she was concerned about something she had noticed one of her (twin) brothers doing….recently he’s been doing a lot of touching/tapping/stroking with both the palms and backs of his hands, on the stairway rails as he’s going up or down (well, it’s really his fingers, but I can’t figure out how to say that – the palms of his fingers? no….) and also some fairly complicated choreography with his foot (again, it’s the toes rather than the whole foot) at the top of the stairs…..He handed me the remote control for the TV the other day, and the way he touched my hand was immediately recognizable – Both he and his brother (we think they’re identical) have had lots of sniffing and throat-clearing, but *surprise*, they also have allergies…. His brother doesn’t meet the criteria for ADD, but mainly because he’s more inattentive than hyper – if I had him re-evaluated, I’m pretty sure he’d be dxd ADD-inattentive. Sorry to be rambling like this. But anyway, the prospect of one or two more kids with TS doesn’t really bother me all that much for some reason. Maybe because I already know where to go for info & support. The best thing was that Cheli was concerned enough about the situation to talk to me, and that she did so in a considerate and compassionate manner. *That* is a new development, and you can bet she got lots of praise for how she brought it up. She’s back on Clonidine, btw, and says it is helping with her focus/attention. Also some Prozac, but too soon to tell with that…….. Kate in IL who’s wondering about *her* newsfeed now – no new messages on *any* of the groups I read since last night….. — ******************************************************* * Life’s too short to put up with lousy coffee. * ******************************************************* Kate Winkler * wink…@prairienet.org * George Groschen
Response:
In article <4pubp8$…@vixen.cso.uiuc.edu>, wink…@prairienet.org wrote: > Cheli asked to speak with me privately yesterday evening > because she was concerned about something she had > noticed one of her (twin) brothers doing….recently he’s > been doing a lot of touching/tapping/stroking with both > the palms and backs of his hands, on the stairway rails as > he’s going up or down (well, it’s really his fingers, but I can’t > figure out how to say that – the palms of his fingers? no….) > and also some fairly complicated choreography with his > foot (again, it’s the toes rather than the whole foot) at the > top of the stairs…..
I suppose you know about OCD. My son has this as well as TS. I always think the ‘Fancy Footwork’ is OCD related. Janet
Response:
wink…@prairienet.org wrote:
: Cheli asked to speak with me privately yesterday evening : because she was concerned about something she had : noticed one of her (twin) brothers doing….recently he’s : been doing a lot of touching/tapping/stroking with both : the palms and backs of his hands, on the stairway rails as : he’s going up or down (well, it’s really his fingers, but I can’t : figure out how to say that – the palms of his fingers? no….) : and also some fairly complicated choreography with his : foot (again, it’s the toes rather than the whole foot) at the : top of the stairs…..He handed me the remote control for : the TV the other day, and the way he touched my hand : was immediately recognizable – Both he and his brother : (we think they’re identical) have had lots of sniffing and : throat-clearing, but *surprise*, they also have allergies…. : His brother doesn’t meet the criteria for ADD, but mainly : because he’s more inattentive than hyper – if I had him : re-evaluated, I’m pretty sure he’d be dxd ADD-inattentive. : Sorry to be rambling like this. But anyway, the prospect of : one or two more kids with TS doesn’t really bother me all : that much for some reason. Maybe because I already : know where to go for info & support. : The best thing was that Cheli was concerned enough : about the situation to talk to me, and that she did so in : a considerate and compassionate manner. *That* is a : new development, and you can bet she got lots of praise : for how she brought it up. : She’s back on Clonidine, btw, and says it is helping with : her focus/attention. Also some Prozac, but too soon to : tell with that…….. : Kate in IL : who’s wondering about *her* newsfeed now – no new : messages on *any* of the groups I read since last night….. : — : ******************************************************* : * Life’s too short to put up with lousy coffee. * : ******************************************************* : Kate Winkler * wink…@prairienet.org * George Groschen That is an important difference! Cheli is obviously more comfortable about herself and your family. I wish i could say that for some of my siblings (or my dad for that matter) Good luck with the boys! Chaim Shapiro
Response:
Kate, I have to agree with Janet on the OCD. Kevin first started showing what we thought were tics by doing lots of "stepping" and some finger things that we thought were wierd, as well as having to make it all even. He did have some ts tics too. After seeing the neurologist as well as the psychiatrist, we found it is a very thin line to distinguish an actual tic from an ocd behavior. Nanci
Response:
Nanci wrote: >>we found it is a very thin line to
distinguish an actual tic from an ocd behavior. << Yes, we’ve noticed that too. *Sometimes* Cheli is aware of whether something is a tic or an OC behavior, but most of the time she can’t/doesn’t distinguish between them. And I had pretty much decided if her brother "has" anything at this point, it’s pretty mild OC behavior (nowhere near disorder). Although there might be some subtle tics there, too, though not recognizable by anyone not familiar with TS. Here’s another fine line to walk – teetering between denial and over-identifying things that *aren’t* tics/OCBs. Kate in IL — ******************************************************* * Life’s too short to put up with lousy coffee. * ******************************************************* Kate Winkler * wink…@prairienet.org * George Groschen
Response:
Just to clarify – the line I was teetering on was not the "what’s TS & what’s OCD" line but rather a more fundamental one: "what’s possible TS/OCD" vs. "what’s not" (if that’s any clearer). I’ve since fallen on the TS/OCD side. He has informed me that he was doing certain things two years ago, so without going into details, he’s met the criteria for dx IMO – motor and vocal tics (which change over time) and more than one year duration. Kate in IL — ******************************************************* * Life’s too short to put up with lousy coffee. * ******************************************************* Kate Winkler * wink…@prairienet.org * George Groschen
Response:
Very well said! I have always felt that my daughter who has been dx’d w/such is an individual who happens to also have TS OCD (or whatever) and not the other way around. When we first discussed some of the mannerisms that she was displaying with her pediatrician–who happened to be quite knowledgable about TS–I asked him how one would classify a given mannerism as a tic or OCD behavior. He shrugged his shoulders and indicated that professionals often have difficulty with this differentiation. When I asked at what point treatment would be indicated, his response was when symptoms began to interfere with her daily functioning. We watched her symptoms for about 21 mos. before initiating treatment–with her full consent for such–when she was 7 yrs. 10 mos. of age. Although her symptoms might be described as having developed to a moderately severe to severe degree, treatment was implemented before they had a chance to result in impairment of her self-esteem. She continues to excel academically, socially, and in physical activities. Her pediatrician indicated that the goal of treatment is to maximize functioning ability and prevent success deprivation. He has worked together with us to insure that this goal is obtained, and we have been fortunate that she continues to do so well.
Response:
Personally, I don’t think it is important to differentiate tics/ocb’s, they are what they are and are there regardless. But, when it comes to medicating them to relieve the symptoms, if it is a tic it may require a different medication than an ocd behavior would. Since Kevin has been medicated for his ocd, even though they sometimes break-through the medication, I can tell what was a tic and what was an ocb. The tics are very few and far between and thankfully he can now walk the entire length of the house without having to stop on each line and floor change and step four times with each foot. Nanci
Response:
Nanci–the behavior you describe Kevin displaying was very similar to what my daughter did before taking medication. However, her whole body became involved to the point it seemed like it took several minutes for her to walk the length of a "standard" room in the house. She also had developed several tics, including "neck jerks" and facial grimaces. Within about 10 days from start of medication (Pamelor) all tics and OCD’s were significantly reduced and became minimal, if at all. Her speech became less compulsive and more fluid, she became less impulsive, and her former, easy-going disposition, returned. She no longer had to always be "right" or "first." Her peer relationships improved to what they had been prior to onset of symptoms. I also noticed an increase in standardized test scores this year since she went back on medication (score increased to 99%ile in all areas). At beginning of year (when not on medication) her teacher commented that she had been making several careless errors in math. This tendency declined with re-start of medication.
Response:
Nanci (r…@PioneerPlanet.infi.net) wrote: : Kate wrote:
: > : > Here’s another fine line to walk – teetering between : > denial and over-identifying things that *aren’t* tics/OCBs. Why bother to teeter on the line? It doesn’t matter whether you call something a tic or an OCB behavior; identifying the causes of problems may help, but what you end up deciding to name something doesn’t really make much difference, does it? Forget "the line", think about the impulsions, the feelings. Someone may call them TS or OCD, but the most important thing is that they’re part of a person, and no label, diagnosis, or misdiagnosis can change that. This is coming from someone who grew up with TS etc. I realize for many parents and other friends or loved ones, labels and diagnosis is one of the few ways to understand some of these things, but I’ve always thought that sometimes these labels did a poor job of describing things. Tics or odd behaviors may look entirely different to someone else, but to the person having them (or at least to me) the feelings and sensations behind them are very similar no matter what the "output". I don’t think of myself as having TS with ADD and OCD etc…. I just think of myself as being someone with TS, and everything else is part of that. When someone has a cold, you don’t diagnosis him/her as someone with "The Sneezes" and "The fever" and "The Runny Nose Disease" and "The Sore Throught Disease" – you just say they’ve got a cold. I hope someday TS is understood so that symptoms that are part of one syndrome aren’t necessarily diagnosed as different syndromes or disorders. Symantics aside, I honestly think people have to excercise caution when they try to treat TS and ADD and OCD etc. They may be all part of the same thing, but if someone tries to treat them differently, say with three seperate meds or psycho treatment or whatever, they may be doing more harm then good. - Matt
Response:
Kate wrote: > Here’s another fine line to walk – teetering between > denial and over-identifying things that *aren’t* tics/OCBs.
We walked that line for about a year with Kevin before we finally just HAD to find out. Most practitioners won’t even identify ts/ocd until it has been prevalant for a year at least and certainly won’t medicate unless it becomes invasive to daily activities. So we took what we learned with Amy and kept mostly quiet except for a few questions and then saw a neurologist. Nanci – Hide quoted text — Show quoted text –
