Question:
"joanne e. cohen" <joco…@tiac.net> wrote: >Again, what you folks are talking about as seizures seem to me to be more >related to dissociative states….there is talk about kids with TS being >traumatized by the nature of TS..it iscomminly known that traums (such as >the extreme manifestation of PTSD) results in dissociative >behaviors…this accounts for the "blanking out" or atypical tics and >behavior uncharacteristic of the person’s usual behavior (e.g, "he’s such >a sweet gentle child")…..what do you guys think??? Any experts out >there???? Just my thoughts.
While some may experience the ‘blanking out’, my understanding is that this isn’t typical in the TS/ADD/OCD rages. In fact, I’ve had a neurologist of the TSA Advisory Board tell me that the fact that they DO remember the rage event and are remorseful is actually a sign that it is related to TS/ADD/OCD as opposed to some other neurological disorder. Vicki H.
Response:
Kathryn Taubert (BWHM…@prodigy.com) writes: >>I"ve read a story about an adult male with TS and his experience in an >>airport. He pretends to be asleep to escape from people at the airport. > It’s very possible, Diane. Sleep is one thing that depressed people do to > "escape" as well. I also find Joanne Cohen’s comment’s re: dissociative > behavior interesting in an earlier post. Reaction to post traumatic > stress…which, as we all know, could very well be a "side effect" of > living with TS! For both "us kids" AND you parents!! > KAT in CT
Dear KAT: What, exactly, is Post traumatic stress disorder? From what I can tell, I think that might be what I have myself since our house burnt down in the fire 8 months ago.It’s hard for me to distinguish whether it really might be that, or just more of my OCD acting up again! Since the fire, I always have nightmares about it, keep waking up, and don’t sleep well at night, as you can imagine.I often have "flashbacks" of being in it and how frightening it was, I am overwhelmed with fear that it might happen again, I am chronically tired, my immune system is down and I’m catching everything I used to not before, I lost weight, I have frequent panic-attacks,and I am always in a state of anxiety. I also burst out crying at times and am over come with overwhelming sadness at times, such as when I see the kids’ little toy firetruck…. Does this sound like it could be PTSD…or just more OCD, which I had even before? Irina, mother of 6. — ************** IRINA SHOUSHOUNOVA bo693 ******************** Jesus is present all year long, not just at Christmas-time. Rejoice for the Lord is near!! ***********************************************************
Response:
boli…@hiline.net (JOSEPH W. OLIVER) wrote: >When he was older and in elementary school and would shut down he >would sometimes just withdraw and put himself to sleep in a matter of >minutes right in front of the teacher or while in therapy, in front of >the therapist. I know, it was a was of escape. >We are glad we did not have to deal w/ rage attacks. Flat lining was >frustrating but I’m sure alot easier to deal w/ than rage attacks. >Anyone else have any experience w/ shut down? >RUTH in IN
My 9 yo did this for a few months. In fact, for a time we had this ’shut down’ reaction as well as rage attacks. He, too, would fall instantly to sleep in odd places and times as an escape mechanism. This actually started before he went on clonidine, but got much more frequent while he was taking clonidine. After he went off clonidine, which didn’t seem to be helping much, this problem went away. He is now taking Prozac, Tegretol and Risperdal and I haven’t seen any of these ’shut-downs’ for at least 2 months. Vicki H.
Response:
- Hide quoted text — Show quoted text -Irina Shoushounova wrote: > (bammo…@pacbell.net) writes: > > I just finished reading the postings regarding rage attacks. Could > > someone tell me what happens during these attacks? My 10 year old son > > was diagnosed with ADHD & mild TS last year. One of the things that sets > > him off is hearing the sounds of dishes and silverware when we are eating > > or doing the dishes. He calls it "making ding-ding noises". It seems like > > the quieter we try to be about it the more he notices it. This is one > > problem his medications don’t relieve. Has anyone else every dealt with > > this? > > Thanks for information you can give. > > Beverley Moore > > bammo…@pacbell.net > Dear Beverly: > My 6 yr old (TS, ADD, and psychotic diagnosis) has what the doctor also > calls "rages", and that the closest thing I can compare with is the > tantrum of a 2 yr old.In fact, my 2 yr old *does* have anger "fits" that > are similar; for him when something goes wrong, he tries something and it > won’t work, he isn’t allowed to have/do something,is over-tired, or when > things seem overwhelming to such a little guy in such a big, busy world. > At age 6 kids have normally outgrown such tantrums, but she is very > prone to them still(the doc says it’s typical in kids like her).She gets > mad and raging when she is told "no"(even if not said with that exact > word, and even when calmly said and explained why; she doesn’t care,she > just concentrates on what she wants and wants it *now*), when she doesn’t > get what she wants(and when she wants it), when she doesn’t get her own > way, when she has to (or is told to) share, wait, or take turns. > During one of her rages she will cry, scream, kick, thrash her arms and > legs about wildly, bang her head, hit at hersself(or others nearby), and > pull her hair at times as well. This lasts usually 20 min. but sometimes > even longer.During this time she will refuse to move(you tell her to go up > to her room a few minutes to calm down, and she won’t; she’d have to be > dragged up the stairs, so we just end up leaving her there on the floor or > whatever until it wears itself down on it’s own),all the while insisting > "I have to do it NOW!" "But I WANT it!" etc…As the tantrum winds down, > she gets into heaving and sobbing and shaking,and even after it wears off > and she’s calmer, she’ll still keep on insisting on whatever it was that > caused the outburst in the first place;she’ll still go on and on about, > not understanding that the decision has already been made. > We have found Risperdal works best for lessening these rages, and when > it is frequent(several times a day or week say, as opposed to a few times > a month) the doc says to give an extra 1/4 tablet over a period of days, > and this calms her down so she doesn’t get "set-off" as much. > Irina, mother of 6. > — > ************** IRINA SHOUSHOUNOVA bo693 ******************** > Jesus is present all year long, not just at Christmas-time. > Rejoice for the Lord is near!! > ***********************************************************
Irina, As a born again believer who also has TS, this is a most interesting topic. As an undiagnosed child with TS, I definitely had rage attacks. In fact as an adult my sometimes instant and near furious temper is scarey. Since becoming a Christian 7 years ago I can rejoice that while not having arrived (neither did Paul; read Phillipians 3) my temper and "rage" attacks are small compared to what they were years ago. While acknowledging that there are probably some physiological components to why I feel rage when I do, I know that it is not taking responsibility for my own sin to just say it is the TS and related problems. I know that my one year old son’s seemingly incessant crying can just drive me crazy, as can sudden unexpected noises but not the continually noisy shop environment in which I work. I find it very troubling that as a believer in Jesus Christ who can honestly say that my life has been truly, radically changed can so often erupt or nearly erupt into such anger or rage. I do know that although I am not what ( or who) I used to be, I am not all what I should be or could be or will be when I shall see him as he is (1John 3:2). Dean Thompson
Response:
>I"ve read a story about an adult male with TS and his experience in an >airport. He pretends to be asleep to escape from people at the airport.
It’s very possible, Diane. Sleep is one thing that depressed people do to "escape" as well. I also find Joanne Cohen’s comment’s re: dissociative behavior interesting in an earlier post. Reaction to post traumatic stress…which, as we all know, could very well be a "side effect" of living with TS! For both "us kids" AND you parents!! KAT in CT
Response:
I run the National Light & Sound Therapy Centre in London where we have done considerable research into children with a variety of disabilities – over 450. A large percentage of these have distorted hearing, and many are profoundly sensitive to certain sounds. One theory of why autistic children withdraw inside themselves and do not respond, is because since sound ( and sometimes light ) is so distressing for them, they attempt to block out the world. When a child comes to our therapy centre, we do an audiogram if possible. In the majority of children with learning disablities, autism, Tourette’s syndrome, Asperger’s etc. the audiogram looks like a range of mountain peaks. (In a child without any problems the audiogram should look like a smooth curve or fairly even line, with a few ups and downs.) We are seeing the same with children who have difficult behaviour, hyperactivity, ADD etc. Many children with tantrums and rage attacks are noticably improved following treatment. The treatment given is a two week course of retraining the hearing, Auditory Integration Training with a sound modulation system combined with Light Therapy. Dr. Berard, the originator of AIT wrote a book called, Hearing Equals Behaviour, which describes the method and rationale behind it. It seems there is a very direct connection between the way a child hears and his/her behaviour. I would be very interested to do audiograms on a group of unsociable and violent criminals in prisons. I am quite sure that their audiograms would show this distinctive pattern of a range of mountain peaks. Can anyone help me with this research? Do you work in a prison? Our Centre is a non-profit making therapy centre whose treatment is based on several years of research. The results of our treatment is carefully documented and I can supply further information if you are interested. In article <32B6CFD5.1…@aom.ericsson.se>, John Morten Malerbakken <ehsj…@aom.ericsson.se> writes – Hide quoted text — Show quoted text ->Hello Beverly, >It is decribed in TS litterature that TS patients may have problems with >the distinctions between sounds in a way that all sounds sound equally >strong. >This can mean that you in a classroom situation will be equally >disturbed by the sound of a large truck passing outside the window, and >a fly passing by your head. No wonder ADD and learnign disabilities are >often described as part of TS. I am personnally on the other end of the >scale, with a musical ear (Could be that it is one and the same thing). >One of my sons seem to have a problem with the sounds getting mixed, adn >it makes him frustrated and easier to trigger into rage. >He is however helped by listening to classical music, which seem to >"block out" some of the disturbances. >You can also find the same related to physical sensors. A syringe might >feel like a big pole to some TS patientes. (Well we all feel that from >time to time, butthey do actually feel physical pain differently than >others. >By teh way, related to the hearing problem, a school here in Sweden have >actually distributed hearing protection(you know the type that they use >at the shooting range or in construction work) to all their students, so >that they do not get disturbed by the others while working alone. Not a >bad idea. 25-30 students make noise all the time, no matter how much >they try to be still. >John Morten >bammo…@pacbell.net wrote: >> I just finished reading the postings regarding rage attacks. Could >> someone tell me what happens during these attacks? My 10 year old son >> was diagnosed with ADHD & mild TS last year. One of the things that sets >> him off is hearing the sounds of dishes and silverware when we are eating >> or doing the dishes. He calls it "making ding-ding noises". It seems like >> the quieter we try to be about it the more he notices it. This is one >> problem his medications don’t relieve. Has anyone else every dealt with >> this? >> Thanks for information you can give. >> Beverley Moore >> bammo…@pacbell.net
– L&S
Response:
bammo…@pacbell.net wrote: >I just finished reading the postings regarding rage attacks. Could >someone tell me what happens during these attacks? My 10 year old son >was diagnosed with ADHD & mild TS last year. One of the things that sets >him off is hearing the sounds of dishes and silverware when we are eating >or doing the dishes. He calls it "making ding-ding noises". It seems like >the quieter we try to be about it the more he notices it. This is one >problem his medications don’t relieve. Has anyone else every dealt with >this? >Thanks for information you can give. >Beverley Moore >bammo…@pacbell.net
We had the opposite problem w/ our son who has TS. The least little bit of frustration of something not going his way and he would shut down. We sometimes refered to it as"flat lined". He would go totally limp. Trying to pick him up to comfort him was like trying to pick up jello, a rag doll, a sack of potatoes. There was absolulely no response from him. We would try to talk to him and console him and it was as if he didn’t hear you. One instance I remember in particular happened at church one Sunday when he was about 6. The kids were drawing lambs and one of the other children commented about his lamb and that was it. He just withdrew. His teacher came and found me quite concerned. He was just in a heap on the floor and would not respond to anything. Even when picked up he was limp. When he was older and in elementary school and would shut down he would sometimes just withdraw and put himself to sleep in a matter of minutes right in front of the teacher or while in therapy, in front of the therapist. I know, it was a was of escape. We are glad we did not have to deal w/ rage attacks. Flat lining was frustrating but I’m sure alot easier to deal w/ than rage attacks. Anyone else have any experience w/ shut down? RUTH in IN
Response:
JOSEPH W. OLIVER (boli…@hiline.net) writes: – Hide quoted text — Show quoted text -> bammo…@pacbell.net wrote: >>I just finished reading the postings regarding rage attacks. Could >>someone tell me what happens during these attacks? My 10 year old son >>was diagnosed with ADHD & mild TS last year. One of the things that sets >>him off is hearing the sounds of dishes and silverware when we are eating >>or doing the dishes. He calls it "making ding-ding noises". It seems like >>the quieter we try to be about it the more he notices it. This is one >>problem his medications don’t relieve. Has anyone else every dealt with >>this? >>Thanks for information you can give. >>Beverley Moore >>bammo…@pacbell.net > We had the opposite problem w/ our son who has TS. The least little > bit of frustration of something not going his way and he would shut > down. We sometimes refered to it as"flat lined". He would go totally > limp. Trying to pick him up to comfort him was like trying to pick up > jello, a rag doll, a sack of potatoes. There was absolulely no > response from him. We would try to talk to him and console him and it > was as if he didn’t hear you. > One instance I remember in particular happened at church one Sunday > when he was about 6. The kids were drawing lambs and one of the other > children commented about his lamb and that was it. He just withdrew. > His teacher came and found me quite concerned. He was just in a heap > on the floor and would not respond to anything. Even when picked up > he was limp. > When he was older and in elementary school and would shut down he > would sometimes just withdraw and put himself to sleep in a matter of > minutes right in front of the teacher or while in therapy, in front of > the therapist. I know, it was a was of escape. > We are glad we did not have to deal w/ rage attacks. Flat lining was > frustrating but I’m sure alot easier to deal w/ than rage attacks. > Anyone else have any experience w/ shut down? > RUTH in IN
Dear Ruth: What you described as "shut-down" sort of describes one of our kids(TS, ADHD, and psychotic, as well as developmental delay and signs of autism). He is almost 4 year old, but functions at an infant level; about 9 months.(his almost 5 yr old sister is the same.) He, however(his siter was always like this in comparison, since birth) *seemed* to be, and to develop, perfectly normal for his first 9 months; interacted, sat, crawled, ate well, played, etc.. as he should have….and then he suddenly just "shut-down"; he cried endlessly, hours on end(used to be a quiet amiable baby), and just stopped everything;suddenly became unresponsive, withdrew into himself, begun rocking and making animal noises, stopped eating(still now only eats yogurt and drinks liquid meal replacements in his bottles), stopped babbling and playing, and stopped all cognitive and motor development from then onward. So, with him, it wasn’t just temporary episodes of shut-down as in your child’s case, but much more severe; just reaching a normal certain point of development and then stopping; staying there, and never going any furthur.Now he is still like he was when he stopped at 9 months.He is also still on the bottle(refuses to even try a cup, and my 8 mos. old baby likes the cup!!) and isn’t toilet-trained. Is such total and profound shut-down normal for kids with severe psychiatric problems like him? Has anyone else ever experienced this? He appeared perfectly normal for 9 months and there was no warning….he just stopped.It’s so sad, and I feel a mourning loss as well; I no longer have the child I had; it feels like I’ve lost him somewhere….. Irina, mother of 6. — ************** IRINA SHOUSHOUNOVA bo693 ******************** Jesus is present all year long, not just at Christmas-time. Rejoice for the Lord is near!! ***********************************************************
Response:
Reading these posts re: sleeping as such suggests something more perhaps, than escape? Sleep disorders are not uncommon with TS. Could this be akin to narcolepsy here???? Are these kids perhaps not getting good enough sleep during the night, which makes them tired and more prone to falling asleep during the day? I wonder…has any of this been investigated by the kids’ MDs? KAT in CT Kat, I"ve had Jonathan go to a sleep disorder place in New Haven last year. Narcolepsy was ruled out. After examining this sleep pattern in school for six years now I am absolutely convinced it is a method of escape. I do have a child with TS. ADHD, LD and OCD that also has rage attacks from time to time. When I discuss with my son his sleeping in school, he tells me he can’t get into trouble if he is sleeping. Like I said, he began this pattern in school at a time when he was not medicated, and desperately trying to find a way to help himself. I don’t think he enjoyed spending most of first grade in the principal’s office. I"ve read a story about an adult male with TS and his experience in an airport. He pretends to be asleep to escape from people at the airport. I believe this was in Tracey Haerle’s book. Regards, Diane in CT
Response:
"joanne e. cohen" (joco…@tiac.net) writes: > Again, what you folks are talking about as seizures seem to me to be more > related to dissociative states….there is talk about kids with TS being > traumatized by the nature of TS..it iscomminly known that traums (such as > the extreme manifestation of PTSD) results in dissociative > behaviors…this accounts for the "blanking out" or atypical tics and > behavior uncharacteristic of the person’s usual behavior (e.g, "he’s such > a sweet gentle child")…..what do you guys think??? Any experts out > there???? Just my thoughts.
Dear Joanne: Speaking of dissociative states, my hubby, who was molested by his family as a child, has had these on occasion himself.During these episodes he will do and say things unlike him(and such rage on 2 occasions that have resorted to violence towards others, even though normally he’s quiet and mild-mannered; it wasn’t even like the same person) and than once he comes out of it he cannot even remember the events, and strongly denies it, and even thinks to the degree that I am making up the entire thing and imagining it. He sees some quack(my opinion) hypnotist who is also a doctor in Kingston who regresses him, where he can recall the events,and as he has MPD(multiple personality disorder, also as a result of the trauma of abuse) the doc also "joins" all the "selves" together to strengthen the "union" and to make him more fuctionable. It spooks me, to tell you the truth, but the doc has said such states of "blacking-out" are common in abuse victims, where they close down their memory of such horrific events in order as a defence to protect themselves.As a reslut in him however, he has no memory of any event other than right here and now(he can’t even remember yesterday, or 3 hours ago) as he has "evolved" his memory blocks to such a degree that all events are forgotten, not only his entire childhood…… Irina, mother of 6,3 with severe TS. — ************** IRINA SHOUSHOUNOVA bo693 ******************** Jesus is present all year long, not just at Christmas-time. Rejoice for the Lord is near!! ***********************************************************
Response:
BWHM…@prodigy.com (Kathryn Taubert) wrote: >Reading these posts re: sleeping as such suggests something more perhaps, >than escape? Sleep disorders are not uncommon with TS. Could this be akin >to narcolepsy here???? Are these kids perhaps not getting good enough >sleep during the night, which makes them tired and more prone to falling >asleep during the day? >I wonder…has any of this been investigated by the kids’ MDs? >KAT in CT
My son’s neurologist has seen his sleeping, as described in these posts. He says this is NOT narcolepsy, but rather an escape mechanism. I HAVE witnessed a couple of genuine narcolepsy episodes in my son, where he collapsed to the floor in sudden sleep, then got up 5 minutes later saying he couldn’t go to sleep – completely unaware that it had occurred. But these incidents were definitely different from the ’sleep as escape’ incidents I have witnessed. For my son, these incidents went away when he went off of clonidine. But, as we all know with the waxings and wanings, only time will tell if this went away coincidentally at that time or because of the change in medication. (The incidents had started BEFORE he went on clonidine.) Vicki H.
Response:
"joanne e. cohen" <joco…@tiac.net> wrote: >Dear Vicki, >I have read with interest your description of your sons rage attacks. I >have to admit I side a little with Kat on the claim that not all people >with TS alone do experience such rage.
I totally agree with KAT that not all people with TS ALONE experience the rage. I just disagreed with her original statement, that people with TS are no more prone to the rage than people without TS. In her original statement, she didn’t say people with TS ALONE. Big difference. And I’m not even saying that ALL people with TS/ADD/OCD experience the rage. But some do. > As a professional adult who has always >been "emotionally labile", and now as a social worker, I see in myself >numerous examples of over-dramatization, interpretation and reactivity to >relatively minor circumstances. Anyway, what I wanted to say to you that >I’ve heard many parents discuss such rage attacks; a woman whose 16 year >old son (a big kid) used to push her up against the refridgerator to the >point of denting it.
But I would presume that in the kind of situation you describe above, the 16 yo might afterward be remorseful that he took it so far as to dent the refrigerator, but he still feels that he was angry at his mother – and may still harbor a bit of anger. I will never forget an experience the last time my son was hospitalized due to the violence. We were required to attend a group therapy session with other parents and kids. Our son was the only one there with TS; the others were there because of gang activity, running away, suicide attempts, etc. The therapist went around the room, having the kids tell their parents publicly what they would like to change about them. Every kid there except ours told his or her parents they wished they could change this, or that, or…. Our son was the last to speak. He said, "I don’t want to change anything about my parents. I like them just the way they are." It is one thing to fly into a rage with someone you are angry with; it is quite another to fly into a rage with someone you are NOT angry with. (By the way, for us this is not just a child versus parents phenomena. The same thing has happened at school – and he adores his teachers and is horrified that he has had these rage attacks and mistreated them.) >Something you might consider looking into is whether or not your son is >experiencing dissociation, or dissociative states when these attacks >occur. You mentiona few things that set off flags to my newly acquired >diagnostic skills; that "it isn’t like him", "he is remorseful >afterwards", and often apologizes WHILE he is still doing it. Have you >played with learning advanced cognitive-behavioral techniques? I also >feel strongly that as he gets older (and bigger) you need to think about >your safety and that of himself and others. What would happe if you >simply left him? Destruction of the house is obviously not good, and >then you must choose between your safety and his. I think this is where >behavioral training by an expert might help. If it gets really bad, you >might even consider an injectable tranquilizer PRN. Usually, the key >here is to catch it the moment you sense the buildup…..you seem very >insightful about the preciptating factors leading up and his bodily >responses, clues, etc…..
We’ve been working with a therapist who sees a lot of TS patients for many months now. About a month ago, my son started taking Risperdal along with his other medications. I’ve seen more improvement with a tiny amount of Risperdal than with anything else we have tried – behavior mod-related or medicine-related. Vicki H.
Response:
When he was older and in elementary school and would shut down he would sometimes just withdraw and put himself to sleep in a matter of minutes right in front of the teacher or while in therapy, in front of the therapist. I know, it was a was of escape. Ruth, I go through this sleep shut-down with my son as well. He sleeps in school as a method of escape. Ocassionally, he will also sleep while he is waiting to see the neurologist. I think sleeping as a method of escape began in first grade, because he was not medicated at the time. Now my son is in seventh grade and this is a very difficult behavior to modify. Falling asleep while the teacher is talking also does not endear my son to his teachers. The school has currently developed a behavior modification program to deal with this. I feel that the current success with behavior modification is due to an overall improvement of all TS, ADHD, and OCD symptoms, not necessarily the behavior mod program. Regards, Diane in CT
Response:
Hello Beverly, It is decribed in TS litterature that TS patients may have problems with the distinctions between sounds in a way that all sounds sound equally strong. This can mean that you in a classroom situation will be equally disturbed by the sound of a large truck passing outside the window, and a fly passing by your head. No wonder ADD and learnign disabilities are often described as part of TS. I am personnally on the other end of the scale, with a musical ear (Could be that it is one and the same thing). One of my sons seem to have a problem with the sounds getting mixed, adn it makes him frustrated and easier to trigger into rage. He is however helped by listening to classical music, which seem to "block out" some of the disturbances. You can also find the same related to physical sensors. A syringe might feel like a big pole to some TS patientes. (Well we all feel that from time to time, butthey do actually feel physical pain differently than others. By teh way, related to the hearing problem, a school here in Sweden have actually distributed hearing protection(you know the type that they use at the shooting range or in construction work) to all their students, so that they do not get disturbed by the others while working alone. Not a bad idea. 25-30 students make noise all the time, no matter how much they try to be still. John Morten bammo…@pacbell.net wrote: > I just finished reading the postings regarding rage attacks. Could > someone tell me what happens during these attacks? My 10 year old son > was diagnosed with ADHD & mild TS last year. One of the things that sets > him off is hearing the sounds of dishes and silverware when we are eating > or doing the dishes. He calls it "making ding-ding noises". It seems like > the quieter we try to be about it the more he notices it. This is one > problem his medications don’t relieve. Has anyone else every dealt with > this? > Thanks for information you can give. > Beverley Moore > bammo…@pacbell.net
– John Morten Malerbakken Tlf: +46-31-676194 mailto:ehsj…@aom.ericsson.se
Response:
>I go through this sleep shut-down with my son as well. He sleeps in >school as a method of escape. Ocassionally, he will also sleep while he >is waiting to see the neurologist. I think sleeping as a method of escape >began in first grade, because he was not medicated at the time.
Reading these posts re: sleeping as such suggests something more perhaps, than escape? Sleep disorders are not uncommon with TS. Could this be akin to narcolepsy here???? Are these kids perhaps not getting good enough sleep during the night, which makes them tired and more prone to falling asleep during the day? I wonder…has any of this been investigated by the kids’ MDs? KAT in CT
Response:
Again, what you folks are talking about as seizures seem to me to be more related to dissociative states….there is talk about kids with TS being traumatized by the nature of TS..it iscomminly known that traums (such as the extreme manifestation of PTSD) results in dissociative behaviors…this accounts for the "blanking out" or atypical tics and behavior uncharacteristic of the person’s usual behavior (e.g, "he’s such a sweet gentle child")…..what do you guys think??? Any experts out there???? Just my thoughts.
Response:
Dear Vicki, I have read with interest your description of your sons rage attacks. I have to admit I side a little with Kat on the claim that not all people with TS alone do experience such rage. Remember that TS is a disinhibition D/O, one fraught with tendencies towards impulsivity, supersensitibity, social inappropriateness, and reactivity. A powerful combination to say the least. As a professional adult who has always been "emotionally labile", and now as a social worker, I see in myself numerous examples of over-dramatization, interpretation and reactivity to relatively minor circumstances. Anyway, what I wanted to say to you that I’ve heard many parents discuss such rage attacks; a woman whose 16 year old son (a big kid) used to push her up against the refridgerator to the point of denting it. Something you might consider looking into is whether or not your son is experiencing dissociation, or dissociative states when these attacks occur. You mentiona few things that set off flags to my newly acquired diagnostic skills; that "it isn’t like him", "he is remorseful afterwards", and often apologizes WHILE he is still doing it. Have you played with learning advanced cognitive-behavioral techniques? I also feel strongly that as he gets older (and bigger) you need to think about your safety and that of himself and others. What would happe if you simply left him? Destruction of the house is obviously not good, and then you must choose between your safety and his. I think this is where behavioral training by an expert might help. If it gets really bad, you might even consider an injectable tranquilizer PRN. Usually, the key here is to catch it the moment you sense the buildup…..you seem very insightful about the preciptating factors leading up and his bodily responses, clues, etc….. Enough for now…..Be well, fight the good fight..it’s worth it in the long run…..:-) Joanne in Boston
Response:
I think what you are talking about is tactile and sonic sensitivity. It’s actually sensory sensitivity, which can involve all the senses….From sounds, light, noise (by the way, the little sounds are what often triggers to OC annoyance and TS sensitivity..larger sounds such as a loud rock band or arcade mall are percieved as "white noise" and thus can be less bothersome…) Many people with TS are so sensitive they can "feel" things others can’t…I know this is really personal, but when I need to urinate I get a certain "feel" in my mouth..like the feel your mouth gets when you bite into a lemon. Often, that is my clue that I need to go…..this is well -known with para and quadraplegics….their bodies compensate for sensations they have lost to injury, etc….It’s a way of prevention and detecton that comes to them….. Myself and others can often tell by only Looking and Listening to running water whether it is hot or cold, if one is used to the faucet. I am so attuned, I just know..and am usually right…..This supersensitivity often extends into personal relations…we are often "right on target" about how someone is feeling, what they are thinking, how many miles we have driven..etc….it’s one of the "bonuses" perhaps!!! It can also make life difficult at times!!! Jo in Boston
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One of the things that sets him off is hearing the sounds of dishes and silverware when we are eating or doing the dishes. He calls it "making ding-ding noises". It seems like the quieter we try to be about it the more he notices it. This is one problem his medications don’t relieve. Has anyone else every dealt with this? Thanks for information you can give. Beverley Moore bammo…@pacbell.net Beverly, Yes, noise sensitivity is a problem for my son as well. Everyday sounds such as someone humming, tapping a pencil, or even singing will drive him crazy. Noises that I can simply filter out become my son’s focus. Our neurologist seems to think that Risperdol might help in this area. But, I am reluctant to make the change because we have had many other successes with my son on Prozac. I guess I a little afraid of the unknown. The part of this that I don’t understand is, my son can go into the noisiest of video arcades and not be bothered by the noise at all. Take him to a restaurant where a two year old is giggling at the next table and he goes off the wall. I would think that noise sensitivitiy falls into the category where many of the TS folks are also bothered by light, clothing textures, and space relationships. Regards, Diane in CT
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I am not in the medical profession; I am merely a mom. But personally, I tend to think that someday the medical community will find these are somehow related to seizures, as they seem to have some similarities to an epileptic seizure – the sudden start, the out of character movements during the attack, the ending in emotional exhaustion or sleep. Vicki H. Vicki, From what I"ve seen as a mom, I would agree with your thoughts on the seizures. Regards, Diane in CT
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- Hide quoted text — Show quoted text -dcfie…@aol.com (DCFields) wrote: >I am not in the medical profession; I am merely a mom. But personally, >I tend to think that someday the medical community will find these are >somehow related to seizures, as they seem to have some similarities to >an epileptic seizure – the sudden start, the out of character >movements during the attack, the ending in emotional exhaustion or >sleep. >Vicki H. >Vicki, >From what I"ve seen as a mom, I would agree with your thoughts on the >seizures. >Regards, Diane in CT
This makes a lot of sense to me too…..from hearing what some have said happens during them……..the individual, sometimes, seems to "blank out" during these episodes..often not remembering what happened, and/or feeling out of control of them. KAT
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(bammo…@pacbell.net) writes: > I just finished reading the postings regarding rage attacks. Could > someone tell me what happens during these attacks? My 10 year old son > was diagnosed with ADHD & mild TS last year. One of the things that sets > him off is hearing the sounds of dishes and silverware when we are eating > or doing the dishes. He calls it "making ding-ding noises". It seems like > the quieter we try to be about it the more he notices it. This is one > problem his medications don’t relieve. Has anyone else every dealt with > this? > Thanks for information you can give. > Beverley Moore > bammo…@pacbell.net
Dear Beverly: My 6 yr old (TS, ADD, and psychotic diagnosis) has what the doctor also calls "rages", and that the closest thing I can compare with is the tantrum of a 2 yr old.In fact, my 2 yr old *does* have anger "fits" that are similar; for him when something goes wrong, he tries something and it won’t work, he isn’t allowed to have/do something,is over-tired, or when things seem overwhelming to such a little guy in such a big, busy world. At age 6 kids have normally outgrown such tantrums, but she is very prone to them still(the doc says it’s typical in kids like her).She gets mad and raging when she is told "no"(even if not said with that exact word, and even when calmly said and explained why; she doesn’t care,she just concentrates on what she wants and wants it *now*), when she doesn’t get what she wants(and when she wants it), when she doesn’t get her own way, when she has to (or is told to) share, wait, or take turns. During one of her rages she will cry, scream, kick, thrash her arms and legs about wildly, bang her head, hit at hersself(or others nearby), and pull her hair at times as well. This lasts usually 20 min. but sometimes even longer.During this time she will refuse to move(you tell her to go up to her room a few minutes to calm down, and she won’t; she’d have to be dragged up the stairs, so we just end up leaving her there on the floor or whatever until it wears itself down on it’s own),all the while insisting "I have to do it NOW!" "But I WANT it!" etc…As the tantrum winds down, she gets into heaving and sobbing and shaking,and even after it wears off and she’s calmer, she’ll still keep on insisting on whatever it was that caused the outburst in the first place;she’ll still go on and on about, not understanding that the decision has already been made. We have found Risperdal works best for lessening these rages, and when it is frequent(several times a day or week say, as opposed to a few times a month) the doc says to give an extra 1/4 tablet over a period of days, and this calms her down so she doesn’t get "set-off" as much. Irina, mother of 6. — ************** IRINA SHOUSHOUNOVA bo693 ******************** Jesus is present all year long, not just at Christmas-time. Rejoice for the Lord is near!! ***********************************************************
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bammo…@pacbell.net wrote: >I just finished reading the postings regarding rage attacks. Could >someone tell me what happens during these attacks? My 10 year old son >was diagnosed with ADHD & mild TS last year. One of the things that sets >him off is hearing the sounds of dishes and silverware when we are eating >or doing the dishes. He calls it "making ding-ding noises". It seems like >the quieter we try to be about it the more he notices it. This is one >problem his medications don’t relieve. Has anyone else every dealt with >this? >Thanks for information you can give. >Beverley Moore >bammo…@pacbell.net
Some people with TS have senses that are far more sensitive than the average person. From your description, it sounds like your son’s hearing is especially acute. That can make simple sounds that the rest of us ignore very annoying – possibly even painful – to him. I can explain what the rage attacks in my son look like. From what I have read, others who have experienced them have seen something very similar. They start out of a small frustration. He may be a bit tense or agitated before a rage attack starts, but the trigger is something little not going his way. He may start by pushing me away, or saying extremely rude things. You can see the tension in his body – his hands may be at his sides, but making tight fists. His eyes may open wider. If you have never seen it before, the best description I can give is to think of the ‘flight or fight’ response of a wild animal. There is that moment of tension where you can see the eyes open wide as the animal chooses to make a run for it or stay on and fight. As the parent, when I see this reaction, I try to get my son to go to a calming down place that he knows we have designated in the house. He can be safe there, and there is a punching bag for him to let the aggression out. But often it happens so fast that he refuses to go voluntarily. My son is big for his age and very strong, so for one person to physically drag him to the calming down spot is quite a challenge. Before we manage to get there, he may be cursing me, spitting on me, biting me, biting himself, hitting me, scratching me. Again, think of the wild animal that has chosen to stay and fight, using every defensive mechanism it has to attack the other party. He may throw things, pick up anything he finds to use as a weapon, look directly into a lightbulb on purpose – anything that he can think of to injure himself or injure me. This rage attack may last 5 minutes; it may last 1 hour. Towards the end of the attack he frequently gets extremely remorseful. He may be begging me to forgive him even as he hits me. He may beg me to kill him; he is so ashamed of his actions that he cannot bear it. The rage attack may end with him in tears, or he may fall asleep, or he may let me lead him to a different part of the house and play a specific game with him (one which he has had an obsession about in the past; not just ANY game would work here). During the rage attack, I have observed numerous tics that are very common in TS, but ones that my son doesn’t normally do. After the rage attack is over, those tics go away again and only his ‘normal’ tics remain. (Of course, like anyone with TS, his tics change over time. But certain common tics I have never seen him do except during a rage attack.) As you can imagine, the rage attacks are extremely frightening – both for the person experiencing them and for those who are nearby. The attacks are completely out of character – my son has NEVER been involved in a playground fight, has never harmed an animal, etc. No one who knows him would ever consider him to be a child prone to violence – except during these rage attacks. If there is a big disagreement, true anger, he handles it in a completely different way than the way he handles a small frustration in these rage attacks. And when these attacks are over, he can remember what happened and feels just horrible about it. And he can’t understand why or how it happened any more than anyone else around him can. I am NOT saying that all people with TS experience these. I will say though, that MY son has been diagnosed with TS/ADHD/OCD and HE experiences these. And I know I am not the only parent with a child with this particular diagnosis that experiences these rage attacks. But as I hope you can see from this description, these are VERY different from typical violent actions in an aggressive person. I am not in the medical profession; I am merely a mom. But personally, I tend to think that someday the medical community will find these are somehow related to seizures, as they seem to have some similarities to an epileptic seizure – the sudden start, the out of character movements during the attack, the ending in emotional exhaustion or sleep. Vicki H.
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In article <58rpsc$…@library.airnews.net>, vlh…@airmail.net (Vicki – Hide quoted text — Show quoted text -Hill) writes: >Some people with TS have senses that are far more sensitive than the >average person. From your description, it sounds like your son’s >hearing is especially acute. That can make simple sounds that the rest >of us ignore very annoying – possibly even painful – to him. >I can explain what the rage attacks in my son look like. From what I >have read, others who have experienced them have seen something very >similar. >They start out of a small frustration. He may be a bit tense or >agitated before a rage attack starts, but the trigger is something >little not going his way. He may start by pushing me away, or saying >extremely rude things. You can see the tension in his body – his hands >may be at his sides, but making tight fists. His eyes may open wider. >If you have never seen it before, the best description I can give is >to think of the ‘flight or fight’ response of a wild animal. There is >that moment of tension where you can see the eyes open wide as the >animal chooses to make a run for it or stay on and fight. >As the parent, when I see this reaction, I try to get my son to go to >a calming down place that he knows we have designated in the house. He >can be safe there, and there is a punching bag for him to let the >aggression out. But often it happens so fast that he refuses to go >voluntarily. My son is big for his age and very strong, so for one >person to physically drag him to the calming down spot is quite a >challenge. Before we manage to get there, he may be cursing me, >spitting on me, biting me, biting himself, hitting me, scratching me. >Again, think of the wild animal that has chosen to stay and fight, >using every defensive mechanism it has to attack the other party. >He may throw things, pick up anything he finds to use as a weapon, >look directly into a lightbulb on purpose – anything that he can think >of to injure himself or injure me. >This rage attack may last 5 minutes; it may last 1 hour. Towards the >end of the attack he frequently gets extremely remorseful. He may be >begging me to forgive him even as he hits me. He may beg me to kill >him; he is so ashamed of his actions that he cannot bear it. The rage >attack may end with him in tears, or he may fall asleep, or he may let >me lead him to a different part of the house and play a specific game >with him (one which he has had an obsession about in the past; not >just ANY game would work here). >During the rage attack, I have observed numerous tics that are very >common in TS, but ones that my son doesn’t normally do. After the rage >attack is over, those tics go away again and only his ‘normal’ tics >remain. (Of course, like anyone with TS, his tics change over time. >But certain common tics I have never seen him do except during a rage >attack.) >As you can imagine, the rage attacks are extremely frightening – both >for the person experiencing them and for those who are nearby. The >attacks are completely out of character – my son has NEVER been >involved in a playground fight, has never harmed an animal, etc. No >one who knows him would ever consider him to be a child prone to >violence – except during these rage attacks. If there is a big >disagreement, true anger, he handles it in a completely different way >than the way he handles a small frustration in these rage attacks. And >when these attacks are over, he can remember what happened and feels >just horrible about it. And he can’t understand why or how it happened >any more than anyone else around him can. >I am NOT saying that all people with TS experience these. I will say >though, that MY son has been diagnosed with TS/ADHD/OCD and HE >experiences these. And I know I am not the only parent with a child >with this particular diagnosis that experiences these rage attacks. >But as I hope you can see from this description, these are VERY >different from typical violent actions in an aggressive person. >I am not in the medical profession; I am merely a mom. But personally, >I tend to think that someday the medical community will find these are >somehow related to seizures, as they seem to have some similarities to >an epileptic seizure – the sudden start, the out of character >movements during the attack, the ending in emotional exhaustion or >sleep. >Vicki H.
Thank you, Vicki, for your description of your son’s rage attacks. Jason has had these in the past before we avoided red dye#40. He also had a milder attack when he was on Haldol, but it was still scary, because he was 11 yrs. old and he had a knife in hand when he was set off. Discontinuing Haldol did the trick. He also has never been involved in a physical fight, even with his brother. He is very loving, tender, and kind. He has TS/OCD and probably ADD also. Jason’s rage attacks would start like a usual tic and escalate into rage, in which his tic was amplified so many times that it was unidentifiable (such as a scream) with arms and legs punching and kicking. He would normally fall asleep when it was over. I would physically have to put him in his room and stand by until it was over. Luckily he was only 5 at this time and it was manageable. I don’t think that he remembered them, because he never mentioned them when he woke up. I agree that they may be a form of a seizure. That is maybe why rage attacks are often treated with anticonvulsants. BTW, sounds bother Jason also. He must wear earplugs during dinner, sleeping, and car rides. It doesn’t always help because he can feel the vibration of the noise also through his body. This is why I give him chelated calcium/magnesium in one of his supplements. Magnesium soothes the sound sensitivity. I am looking into liquid mineral/vitamin supplements at the moment that will be absorbed even better. In magnesium deficient animals, sounds can even kill, causing severe seizures. Adding this supplement has greatly helped him, along with the other supplements. Bonnie Grimaldi in Columbus, Ohio
Response:
I just finished reading the postings regarding rage attacks. Could someone tell me what happens during these attacks? My 10 year old son was diagnosed with ADHD & mild TS last year. One of the things that sets him off is hearing the sounds of dishes and silverware when we are eating or doing the dishes. He calls it "making ding-ding noises". It seems like the quieter we try to be about it the more he notices it. This is one problem his medications don’t relieve. Has anyone else every dealt with this? Thanks for information you can give. Beverley Moore bammo…@pacbell.net
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