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Everything posted by brink

  1. Hi Everyone. It's been a couple of years since I've been on here as we had our son's Tourette's and behavior fairly under control. Well, needless to say, he's hit puberty and at 14 years old, he's taller and stronger than us. He's so very full of anger and swears at us (not allowed, and not a tic). He was also diagnosed with Aspergers, but it seems to be on the brink of it, rather than full fledged. We are at a loss as he is starting to have his rages again and we cannot physically control this, without both of us holding him down. Is there anything any of you can recommend to us to get through this difficult time? I know many of you can relate, and many of you now have older TS, Asp kids. Thank you in advance.
  2. Has anyone had any interaction or experience with the Joshua Center in Kansas City Missouri? We are going to their camp this year and was just wondering if anyone knew much about them. The website is www.joshuacenter.com. I've been down there for a conference and have met Becky Ottinger, the director as well as Mike Sumner. They seem very nice and helpful. Thanks!
  3. My kids love the chocolate almond milk too. They're not big fans of the rice milk, either plain or chocolate. The plain almond milk works pretty well in white sauces like for sausage gravy and biscuits. Yummy. There's also hazelnut and oat milk, oh and hemp milk too. We haven't tried the hemp milk. They just look at the carton and say "NO WAY", lol.
  4. Just wanted to add an update. The doctor originally upped his meds (as in the other post) because she 'wanted better impulse control". Well, boy oh boy was that the WRONG thing to do. We ended up in the ER last night because he basically went crazy. Ranting, pacing, eyes dilated, swearing, angry, climing to the very top of the swing set, jumping off (basically dangerous behavior). He knew this wastn' him. He told me he needed to destroy things so I let him bash up a few bricks in the hopes that it would help (joint compression, anger release in a productive way, etc). Fortunately, he calmed down at the ER and nothing else had to be done, but how sad is it that it took the ER doctor calling his psychiatrist to get her to call us back. We tried calling before we went to the ER and the answering service left messages at all 3 of her contact numbers and she never called us back. I even told them that I needed to talk to someone right away. Since she didn't call back, I called the ER and they told me I should bring him in. This is not improving my opinion of the medical community one single bit.
  5. Thanks Chemar. I just posted over there.
  6. My son has TS, OCD and ADHD. He is explosive and we're working on that using Dr. Greene's methods. He was recently put on Vyvance and now all of a sudden he is wanering away from our house because he says he has "an unsatisfyable need to explore". Well, we spent the night in a hotel last night and come to find out he wandered out of the room while we were sleeping and was walking around the hallway. He also snuck out on to the patio and was wandering around. The other night I found him standing in the living room, after he had slipped out of his bedroom window. This is getting pretty scary in terms of safety and mental health. He is currently taking Zoloft 100 mg, Seroquel 50 mg am and 25 mg pm and just started Vyvanse 20 mg (being upped to 40 mg today). Any insight would be most appreciated. Please help!
  7. That's exactly what happens here too. He seeks out the negative and on some days he pushes so hard for it that I have to get to the negative for the safety of others around him. You hate going there because you know what's driving it at that particular time. Is there a way to get them more motivated? I would love to find a way for him to become interested in so many other things. Although he is, he (and his sister alike) are both very bad on follow through. Sister has anxierty issues and we're not sure if they're school related or Ethan related or both. She seems to havfe an upswing in the anxiety this time of the year. So, needless to say, it's a beauty of a day here sometimes.... Fortunately, we are now going to be seeing a psychiatrist/CBT for him and a family one for all of us. They supposedly both specialize in mood disorders and OCD and are pretty familiar with TS too. So wish us luck!
  8. Thanks for the reply. Actually, he was in public school through 2nd grade, then homeschooled for 3rd and went back for the first part of 4th. We just brought him home at Christmas break and have been homeschooling since. We do let him do keyboarding because writing is an issue for him. He spells phonetically but is getting much better about using the correct spellings. There are day shwen he cooperates completely and does all his work in 3 hours, but then other days it can take 6 hours to do one subject. There's just no telling which way it will go most days. I agree with the desesitization in regards to the movies. My son is a tv/movie junkie. If he could, he'd spend most of the day in front of the Tv. There are days wehn we actually do let him watch way too much. We have many channels blocked so he's forced to watch more educationally based programs such as "How It's Made", "Myth Busters" and stuff like that. Like the one woman said (can't remember if it was this post or another), he also vigorously rubs/pets the dogs when he's in high tic phase. We're at the point now where we will be getting rid of one of the dogs, but can't find anyone who will take her (the dog has her own problems from before we got her). Life is a crazy roller coaster ride. Sometimes I wish I could get off...even if it's just for a minute or two, lol. (don't take that the wrong way, I'm smiling here)
  9. Boy oh boy! All of your posts sound like my child. The only thing we don't have is the erasing thing...although we did at one time. Guess I need to be on here more often, lol. The clothing issue is insane here. He never wants to change his underwear or pants and he'll only wear socks when we have to go out. The minute we get home, off go the shoes, followed right behind with the socks. He'll put them on again if he gets cold, but the minute he warms up, they're off again. The homeschool/homework is a huge issue here. Now that I've read these posts, I think I need to rethink, yet again, how I'm working with him. We did a Valentine's project and made a paper chain that had math problems on it. He did great. But if I were to put a page of math problems in front of him, forget it. He shuts down and that's it for the day. Literally. If he shuts down during a lesson, there's no going back for the entire day, no matter how hard I try. It gets very ugly around here, of which I'm ashamed to say. Do I expect too much from him? It's very difficult to realize and remember that he's only 10, but has a social age of 6-8. He is so intelligent and well spoken that it makes it very difficult for anyone around him to remember how 'young' he is in maturity. This whole thing is so incredibly frustrating. I feel like I'm the one with the problem because I can't deal with my child. DS has been in a ticcing phase since November and while it calms at times, it's been his most severe episode yet. We do deal with the rages and understand that it's more from frustration than anything else. What's scary about the rages is that if you look him in the eye, it's like he's not there. Someone else is inside those eyes. That's scarier than the rage itself. I wake up in the morning hoping for a better day and go to bed praying for a better day. We have a lot of really bad days around here. Is this because of his age? Is this because I can't tolerate some of his behaviors? My son also has a major obsession with guns/weapons. Mainly his NERF stuff, but if he doesn't have a NERF gun in his hands, he has a Bionicle. I'm concerned about the weapons obsession, although we have taught him the rights and wrongs of gun safety and responsibility. He doesn't shoot at people or animals and only uses targets but I feel that it's getting more obsessive. He's now starting to watch 'scary' movies because he thinks they're "cool". Sigh...onto a new day.
  10. Thank you. He started Sertraline 50 mg about 4 weeks ago. We were told that it takes 6-8 weeks for it to 'kick in'. I chose to make today a better day. We went to the craft store and bought some stuff and made Valentine decorations. We were able to incorporate a little bit of schoolwork too. So overall today was better. But I still need other skills to be able to get through tomorrow and the next day and so on. I appreciate your willingness to help.
  11. Hi all. Some of you may remember me from last year, but it's been quite awhile since I've posted. Sine then, life has become hellish in some ways. My son was diagnosed 2 years ago with TS, OCD and now has the dx of a mood disorder. He picks up the mood of anyone around him and that's how he is for the day, uless an new mood becomes stronger around him. What I need now is not the dietary support but the mental support from other TS moms. I need coping skills. I need to know how to get through the day. I need to know how to deal with and cope with my son and how to teach him how to cope and deal with his "disease'(s)(for lack of a better term at this moment. I need to know that I'm not 'damaging' my son in ways that he won't be able to grow up and have normal relationships. Below is what I have written to the founder of the Joshua Center in Kansas City, MO. It basically outlines what we're going through right now. For a little more background, Ethan was diagnosed almost 2 years ago, in 2nd grade. We have learned a lot on our own, particularly what you've written below, and we try not to ask him to 'stop' ticcing. Occasionally, however, we do ask him to try a little control over them for a short period of time. He has a touching tic that makes it virtually impossible to take him to the store, though we continue to try. He also obsesses about buying things, way beyond what a typical 10 year old 'wants'. Defiance is a daily obstacle. Minute by minute, hour by hour, day by day. He refuses to do things. Mainly his work. We understand that a lot of it is coming from the sense of being overwhelmed and we try to break it up into smaller amounts. We have basically accomplished almost nothing in the last 3 days as far as schoolwork is concerned. We have tried incentives (extra playstation time, extra computer time, etc, things that he's come up with for incentives). We've tried restrictions on his tv, computer, playstation, etc as reprimands for not getting things done. We have tried many different things and are now looking into a tutor for the math. The fact of the matter is that he just "won't" do anything we ask. He will often argue to the point of utter dissolution of the communication. He has to have the last word, due to his OCD. He will fight tooth and limb to be able to finish a sentence, no matter how inappropriate it is or angry we get. We understand that this is his OCD at work in most cases. He has to be first in line, everytime. He won't shower, won't change his clothes, etc. Obviously, we do get him to do some of these things but it's really hit or miss. What works today certainly doesn't work tomorrow. It's as if he spends the night planning how to get out of things the next day. He has sleep issues so he takes 1-3 mg of melatonin at night. This has been approved by his doctor. He sees Dr. Erenberg of the Cleveland Clinic. He also takes Digestive Advantage for lactose intolerance. We try to limit his refined sugar because we believe he has an intolerance to it. High amounts of sugar or refined sugar on a regular basis seems to increase the tics. When we pull him off, his tics slow down. He says he likes to be on sugar because he feels good, but says he hates some of his tics. Most of the tics only bother others, not him. Another huge obstacle for us is the negativity. Ethan will continue to push until a negative outcome is reached. It's as if he has to justify that he's bad so he chooses things or words or fights that will ultimately end negatively for him. No matter how hard we try to ignore his attempts, ultimately, we get to the point where it has to stop. He does rage, and this year has been particularly difficult in that his rages have elevated. We've tried different strategies such as restraint, walking away, installing a punching bag (which he was all for until we got it and now it just hangs there), incentives, etc. We try to be very consistent in our discipline but it feels as if it's no use. We lead a fairly hectic life with my part time job and with both of my parents terminally ill. I do understand that this adds to the stress in the household. It is difficult for me to balance all of this, but I try to be calm with Ethan. I also know that I have become somewhat selfish at times and that I'm not the best role model at times either. We reassure Ethan that although he's 'different', he's not. We try to help him through his struggles each day, but sometimes it seems that we're the ones making the excuses for why he 'can't', yet at the same time telling ourselves and him that it's not an excuse. He also seems to feel little to no remorse when he does something inappropriate or outright wrong. Whereas most other children would at least feel some guilt about , say, hitting another child, or taking something without permission, Ethan does not. He only shows happy (in a pretty hyper way most of the time) and negative. Occasionally he will cry out of frustration and sadness, but the sadness only seems to really come when he's had the negative outcome. He feels that the reason he has no friends is becuase he has TS and OCD. We've told him this is not the case. However, he does have a lot of trouble making and keeping friends. This covers a lot of what we're currently going through. PLease feel free to privately message me. I think my email is on my profile. If not, let me know and I'll post it. Thank you for any advice you can offer.
  12. I'm pretty sure that the pill was .05mg. At first, the dr. prescribed 1 tablet. Then the DR decided that it wasn't enough because apparently my son wasn't comatose enough for his liking so he upped it to 1.5 pills...then decided that he wanted him to go up to 2 full pills, 1.5 at night and .5 in the morning. WE decided that wasn't cool withus because he just laid around complaining about being bored. When E says that, it usually means his brain cant' function or he's tired. So my DH and I decided to wean him down to .5 and it was working fine, but he was still going into a zombie-like state right before bed. Then we heard about melatonin and that's been doing the job just fine. Ideally, we don't want him on anything and we're adjusting his activities so that he can eventually not have to take anything. Oh and by the way, it really didn't do anything for his tics. But then again, my son's tics aren't as strong and interfering as some. He has more of the LD and behavioral symptoms of TS. I don't think he's actually ticced in about a week. Sometimes though, he's pretty severe-but that's in our parameters, not on the scope or scale of TS itself.
  13. We took him off clonodine because it made him too zombie-like. We found out that some kids with sleeping problems like our son were trying melatonin and having success. We would rather he was taking something his body already made than a manufactured chemical cocktail. Basically, we're were trying a more natural and holistic approach and it's doing the job. Plus, we stopped going to the neurologist because he was a jerk (the doctor) and he was the one who prescribed it. We went to another well known neurologist in our area and she said she didn't believe in prescribing medication for the low level TS that our son has. Who the heck knows anymore...so many conflicting views. All I know is that the melatonin is working in helping our son sleep at night. Doesn't work for everyone. Oh, and I spoke to the psychologist about the stealth dyslexia and she agrees that he should be tested. He's actually going in today for that.
  14. Thank you for your replies. The stealth dyslexia sounds like it could be a fit. I'm going to do some more reading about it and ask his doctor about it. As for the fear of someone dying, yes, it's possible, however we've been dealing with a lot of tihs for 3 years. He's a sensitive kid, but he hasn't seemed out of the ordinary with any of this. I do agree that the school stressors are probably aggravating things. I just got an email from his other main teacher and she said he's very respectful, actively participates in class and is for the most part a very happy and fun to be with kid. This helps ease my mind at least as fas as he's behaving in school. The melatonin thing, yes it's possible that we could reduce the dosage and will try that. He's been on this dose all through the summer and was getting up at 6 on his own most days. Occasionally, he'd get up at 7 or later but he's always been an early bird. It does make sense though because once he's up and going, he's fine. Thank you so much everyone!
  15. I haven't posted in quite some time and we're managing so so here. My almost 10 year old son has TS and we homeschooled last year. Due to some other family issues (his grandparents illnesses), we've decided that the structure of school was the best option for this year. He's managing somewhat, however we noticed something that started last year. He spells phonetically. He can pass spelling tests with flying colors yet when it's time for free writing or assignments he reverts back to the phonetic spelling. It started early in our studies last year and we corrected it when it happened, but now he's doing it non stop. Is this typical of TS or is this something completely different? Also, he's been taking 1 mg of melatonin everynight since we took him off Clonodine. It's been working great and he's been sleeping so much better. I'd say it's been about 6 months. Lately (since starting school) he's been very tired in the morning. Not wanting to get up. I understand that he's getting used to a completely different schedule, but it's become troublesome. He doesn't want to go to school, but only because he has to get up at 6 am. He goes to bed at 8 most nights and we're pretty strict on the schedule. We have noticed an increase in behavioral ticsat home such as shouting out, petting the dogs pretty roughly, disobedience, rage (well, that's ongoing), obstinance, etc. Do you suppose this is due to the school stuff? Don't get me started on school because we're already having trouble with communications with the "nice" teacher. So, any suggestions etc would be very helpful. Oh, by the way, he's been primarily off refined sugars for over 6 months as well, with an occasional whoops in there. We use organic evaporated cane juice in place of sugar, and occasionally use honey or pure maple syrup. It was going well for the most part, but it some of the behaviors pop up even with the changes. It's pretty obvious when he's been sneaking refined sugar or if we have no choice (at an outing or event). Thanks!!!
  16. Yes, I understand the IEP/smart thing. Actually, I went on the TSA website via the links above and I sure wish I had found this before today. I am just finding out about so much with the TS. Our son definitely has the rage issue associated with TS. It wasn't until he went to a TS camp a few weeks ago that we found out about the stubborn/obstinance/defiance part of it. As I was reading the info on the TSA site, I was actually saddened. Looking back, my son could have been diagnosed so many years ago. He's had rage issues since he was 2. He's had the writing issue since he could hold a pencil. His teacher in 2nd grade started checking his agenda for correct assignments. Kind of the hindsight is 20/20 thing. You get the feeling "if I had only known". What makes me more sad than anything else, is why didn't anyone (meaning the doctors) TELL me this was all part of it. They gave the "yep, it's TS, good luck with life" type sign off. It just upsets me now because so much of what is on the TS site fits and explains my son so well that I feel like I understand him better. Still don't know the best way to deal with some of it, but at least I understand how much of his behavior is TS and what's not. It also basically showed me that the choices I made with the way I homeschooled him were the right choices. We held off on cursive because he just had so much trouble with printing. That's finally gotten better. We took math so much slower this year because he has a much slower processing speed particularly in math. We focused on add/subtraction but then realized he understood multiplication better so we moved over to that and explained addition back from that. and he was much better. I would like to keep him home and do it here, but his sister is going back and he absolutely insists he will not cooperate with me if I keep him home alone with me. We're having a really tough week. He's back in a waxing phase and he seems so desperate. He's back to picking his scabs (he also is OCD), constant motion, almost in a manic state and he's whistling and has the eyebrow tic again. It's hitting hard and fast this time. Just when you think you have a handle on it, it changes. Thanks for the links!
  17. One thing...I may be overlooking this or just missing it, but how does one go about initiating a 504? Do I just tell the school when I call to find out about registering?
  18. Thank you. The more I looked at IEP info, it didn't seem quite right for him. I'm probably going to go with the 504.
  19. My 9 year old son has mild TS. While he has the ticks and some vocal noises, they're intermittent (wax/wane). He also has OCD, not severe, but it's there. The two main issues with his TS is the rage/anger and stubborn/defiance. We didn't even know that the stubborn/defiance/obstinance was a part of TS until he went to a TS camp. We tried homeschooling this year and although I would like to do it again, they're just not happy here. I'm sure this is because they've already been exposed to school. We've decided to send them back. It was recommended that I get an IEP for him. We also have some health issues with 3 of their grandparents, 2 of whom are in final stages of cancer and emphasyma, so sending them back is probably better anyway. I guess my question is, at what point do you decide if you need an IEP? He can mainstream just fine, although he's very slow in math. Good at it, but slow. He'll be behind in math before he even starts because we took that slower here at home. He doesn't want to be treated "differently" or "special", but I think it would be better to have some of it in writing. Also, what should I expect or put into an IEP? Thanks!
  20. I always assumed it was a synthetic. Our son didn't react too well from the sorbitol, especially in the sugar free gums.
  21. Thank you for the additional suggestions. I'm not sure if it would be the soy products as he's had those before without reaction. He's also had almonds in the past without incident, but then again, who knows what all is related. He's doing so much better today. I don't know if the rash has anything to do with it. The rash is almost gone already. We have suspected sugar for quite some time, so I'm leaning toward the raw sugar issue. Not knowing that was also considered a refined sugar, I've been using it in many things for him. None got into his system today. What a journey this is turning out to be!!
  22. Wow! I never knew Sugar in the Raw was just a less refined sugar. That could explain some of this. We have eliminated the corn syrups and I think we've gotten all the dyes and artifical flavors out. I suppose there could be some that I'm missing. We've also tried eliminating all the MSG's as I'm allergic to those anyway. I've done a bunch of research on the MSGs and am very surprised where we find it! We've removed basically all corn products, at least the ones I know about. Thank you for your help! I'm going to try the two sugar subs listed and see what happens. I have a feeling it's all sugar related at this point.
  23. So, we need help. We've tried eliminating dairy and refined sugar and it was helping for a while. It's been about a month. We have let our 9 year old son have chocolate soy milk, chocolate soy ice cream bars and almond milk. Basically, it's the only way he'd eat it, but he's not getting the chocolate items everyday. Anyway, it was suggested that he may be sensitive to chocolate (by a holistic person), along with the dairy and sugar. We started using raw sugar as his birthday is right now and he wanted a cake. I tweaked one of my recipes to work and he loves it. Of course, it's chocolate too. Anyway, the last few days have been particularly difficult. His birthday was on Sunday, so we had the build up to that, then his dad had to have an emergency outpatient sugery on his birthday, so the party was rescheduled to this week. We understand that some of this behavior is related to the birthday excitement because we notice an increase in tics when he's excited or nervous about a 'big' event. Since putting him on the dairy free, refined sugar free restrictions, his tics had been limited to just the facial grimmaces. Now, he's whistling, hooting, some throat noises when he eats, and now the anger and agression is escalating. I actually had to restrain him yesterday because a tantrum got out of control. He's angry, thinks everyone hates him, seems almost depressed, and he's eating constantly. He's always been a grazer, but I swear, even after a full meal, within 30 minutes he's begging for more food. He doesn't want to do his schoolwork and will sit in his chair and spin until we make him stop. At one point he had been spinning for at least 5-10 minutes straight. I also noticed circles under his eyes yesterday and he had a chicken pox-like rash on his shoulder and neck the other day. The rash has since subsided to simple red dots. We have not started on the supplements yet, and that's our next step. I'm trying to note as much as possible so advice perhaps could come more easily. We have an appointment to see a psychologist next week, parents only. She is supposedly the most experienced in 'our group' with TS. My main concern is that my son is happy and healty and he doesn't seem to be either! Any help or suggestions would be most appreciated.
  24. Yes, the teacher did notice. When this all first started, she had no idea what was going on so she contacted me with her concerns. It was because of her astute awareness of my son's behavior that we sought professional help. We had no idea what was going on either! At the time, we didn't have any diagnosis, but I did tell only the teacher what the neurologist had said. Due to the privacy laws, she was not allowed to take it further than a confidence between the two of us, unless I specifically gave permission. The reason I didn't involve the school was more of an interpersonal issue between the principal and myself. We have had many disagreements over the years (she was at the first school then got transferred to the other so we were stuck with her for 5 years). I knew that if she had known about the ADHD label, my son would have been treated differently (in a negative way because of how the principal felt about me), even though his case was not extreme enough. The nurse did know about the medication (Clonodine) he was on due to safety issues, but he never took it at school. There's a lot more involve with the principal issue, but too complicated to post here. Keep in mind, too, that this all just started in March 2007. So there was only a few months of school left. The TS dx didn't come until August, and by then, we had already decided to homeschool (for various other reasons). I am not against getting the school involved, but in our case, it could have been worse than better in the particular building/school he was in. I'm not saying that our district isn't overly accommodating to special needs kids because in fact, they are. It was just a case of us not wanting to get the system involved unless we had to. Had we sent him to school this year, we would have informed the staff of his Dx. In many cases, you have to get the school involved, and in some, it's particularly advantageous because you can utilize the public programs that some of the schools have regarding Dx and special needs classes.
  25. Actually, no, the school was not involved at all. We didn't want those "labels" on him whatsoever. He's had issues most of his life and we had no idea why. Everyone kept telling me "oh, he's just a boy-they have lots of energy". He would itch and rub himself (not inapporpriately, but facially or around the top of his head) whenever he was concentrating, nervous, focusing, etc. If he had to be in front of people he would be worse, even though he enjoyed being there. I figured it was just a "nervous twitch". But in my heart, I just KNEW he wasn't "normal". Finally, in March, after months of squeaking noises and facial grimmaces, he began the gutteral sounds and grunting every time he ate. That turned into whistling while breathing in, more facial movements, almost constant throat noises and getting in trouble at school for "touching" or "pushing" other kids. There is so much more to the story than that, so this is the abbreviated version. I couldn't stand to be around him anymore because of the noises, particularly the "chomping" sounds and the squeaking. I just KNEW something was wrong. I took him to the neurologist and he said right off the bat "oh, he has ADHD". Talk about a punch in the gut! While I suspected ADHD as an underlying role, I had already done enough research on Tic Disorders to basically diagnose him myself! He said "well, I can't rule it out, but we have to see if these twitches are habits or true tics." We started to see a psychologist who recommended a full evaluation to make sure there wasn't a learning disability thrown into the mix. It was during this testing that they noted the multiple tics, movements, and sounds. They made particular note about him not being able to hold a pencil properly and his handwriting suffered because of it. He writes like a K-garden student. I went back to the neurologist and gave him the info on the findings because the stupid psychologist didn't get them there yet (over 2 weeks later!!). The neurologist said "oh, I can see why they'd think that, but I'm still not quite convinced". Oh geez, I thought. Does he have to have a full out tic attack in front of you to convince you? I made a list of the tics we saw in him over the course of 2-3 weeks and he just passed it over. Like he really wasn't listening to me. Ugh, so of course, this sure didn't help my faith of the medical community. One thing we were sure of was to NOT involve the school system. Once they have a label it's forever, at least here it sure is. Granted, we have a great district who is more than eager to help kids in need, but we didn't feel that he needed that kind of help. We are now homeschooling which is helping tremendously. He can work when he can focus and in a less structured environment. He's been doing so much better and barely even misses "school". Anyway, that's my story and I'm stickin' to it, lol
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