Guest guest Posted September 30, 2010 Report Share Posted September 30, 2010 what are the sides of HCG? New here > <mailto: %40> > Date: Wednesday, September 29, 2010, 4:29 PM > I am new to the group and am trying > to get a handle on how I am feeling and why. I had a > pituitary tumor that went undiagnosed till I almost died. I > had 3 surgeries to try and remove the tumor and followed > that with radiation. Some of the tumor remains but I have no > pituitary gland left and am on full replacement. My problem > is that I got used to not having any testosterone in my > system and I like myself better when not on hormones. Has > anyone else found they preferred life without testosterone > or am I just crazy and need to see a shrink. > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2010 Report Share Posted September 30, 2010 None that I know of if you take it right. Don't take more then 500 IU's in a day and to me this is too much. For men only taking HCG to bring up there testosterone levels due to being Secondary try 100 IU's everyday. Men on T shots once a week do 250 IU's the 2 days each before your next T shot. Men on creams, gels, pellets or the patch do 250 IU's every 3 days. And men doing shots every 3 days or 2x's a weeks do 250 IU's the day before there next shot. Still you need to do labs and keep track of your Estradiol. Co-Moderator Phil > > > From: johnfeedbackvaneglando@...<mailto:johnfeedbackvaneglando%40ymail.com> > < johnfeedbackvaneglando@...<mailto:johnfeedbackvaneglando%40ymail.com>> > > Subject: New here > > <mailto: %40> > > Date: Wednesday, September 29, 2010, 4:29 PM > > I am new to the group and am trying > > to get a handle on how I am feeling and why. I had a > > pituitary tumor that went undiagnosed till I almost > died. I > > had 3 surgeries to try and remove the tumor and > followed > > that with radiation. Some of the tumor remains but I > have no > > pituitary gland left and am on full replacement. My > problem > > is that I got used to not having any testosterone in > my > > system and I like myself better when not on hormones. > Has > > anyone else found they preferred life without > testosterone > > or am I just crazy and need to see a shrink. > > > > > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2010 Report Share Posted September 30, 2010 Hi , My 22 month old son was just officially diagnosed with verbal apraxia a few weeks ago. And based on my experience, if you suspect something is " off " and apraxia seems like it rings true with your son's situation, I say definitely get an eval and trust your own instincts. That said, I strongly urge you to do an evaluation with someone who is extensively experienced w/ assessing apraxia (an SLP with definitive apraxia experience or a developmental ped or neuro ped with that experience). Not sure if it would be helpful to hear about our journey to a diagnosis, but I'll share it just in case. When I was in your shoes, I was desperate for advice on what to do... That said, I had to trust my instincts about apraxia b/c everyone around me kept telling me that my son was just young and that he'd start talking late (not to worry, everything would be fine... Strangers would go on to tell me about their friend/nephew/neighbor who didn't talk till 3 and then was fine.) In the end, I'm so grateful I trusted my instincts and did an eval b/c we were able to get a definitive diagnoses and now get my son the help he needs early on.... Our Story... Starting at 12 months, I suspected something was off with speech with my son. At 15 months, I talked to our pediatrician and she referred us to the Early Intervention program in our state. Around 16 1/2 months, they finally assessed him and said he had an expressive language delay at 9.5 mos. All throughout this period, in my search to figure out what was going on, I learned about apraxia and kept thinking it sounded like my son (he was famous for blurting out words once and never repeating them again - plus, he couldn't seem to get his mouth to work.) At his initial EE eval, I asked about apraxia, but was completely dismissed by the evaluator so I put it off, thinking that at least now my son would be getting speech therapy and he'd catch up from his delay soon. After five months of regular weekly EE private speech therapy with no progress, and no explanation from our therapist, I finally put my foot down. I asked our therapist about apraxia and they mentioned it was a possibility, but didn't seem to know much about it (I seemed to know more from my research). Their primary suggestion was to get on a 1 year waiting list to do a pedatric dev. eval at a local children's hospital. Realizing I couldn't wait that long, I started researching folks in our area with extensive apraxia experience. I figured I'd rather do an eval and find out that I'm completely wrong, than to wait a day longer. In the end, I ended up locating an SLP in San Francisco, CA who specializes in apraxia. Although we currently live in Philadelphia, PA, we used to live in San Francisco and were going back for a week long visit (and all folks in our area seemed to be booked months and months out, or didn't have apraxia expertise). So I took a shot and called the CA SLP and as luck would have it, she was in our insurance network and available for an eval during our visit. The eval alone was mind boggling. In the end, the SLP did give my son a definitive diagnoses of childhood apraxia of speech (and a written report that I could share back home). Almost as important however, was watching the SLP interact with my son and actually get him to try to talk in ways he NEVER had before. In regular speech therapy, the therapist would just say words during play, and my son would ignore them and never try to speak. At his apraxia eval however, the SLP really focused on getting my son to say portions -- or approximations -- of words and it was like it opened up a whole new world for him. While he couldn't say much, he definitely tried more than he ever had and got so excited. It was as if he just needed someone who understood his situation/condition and could give him a challenge that was do-able (whole words were not, but some consonant or vowel sounds were). It was mind-blowing to finally see my son light up and try to talk! (He also did what I now know is the tell-tale sign of apraxia where kids try to physically move their mouth to talk). Armed with our diagnoses back home, I've now fought for increased services through Early Intervention with a new therapist with apraxia experience, and we are traveling to NJ once a week for private therapy with someone who specializes almost exclusively in apraxia. In just two sessions with this new private SLP, and after following some techniques we learned in CA, my son is talking more than ever. We're also definitely doing the whole ProEFA/EPA combo and just started NV last week... Anyway, maybe more detail than you wanted, but thought it might be helpful to hear about another's experience with a boy close in age to your son. Good luck and let me know if I can answer any questions/help. I'm still learning, but happy to share whatever I can. - On Wed, Sep 29, 2010 at 12:13 PM, <jamiesue32@...> wrote: > > > Hello everyone, my name is and I have a 22 month old son who has been > diagnosed with a language delay with possible oral motor disorder. (I also > have a 7 yo dd, and 5 1/2 yo ds who were early talkers...dd is dyslexic and > I homeschool the two older kids). > > I have been questioning myself all along as to whether or not I am jumping > the gun in getting a speach eval and therapy. I have well meaning > grandparents telling me he is just the 3rd child and that is why he isn't > talking. The things that alerted me to a potential problem were the fact > that he was slightly low tone, had feeding problems that we did not get > therapy for, but in hindsite should have, when he forms words he uses his > mouth in strange ways like moving his jaw and/or tongue from side to side. > He does have some words that he uses spontaneously, but very few that are > consistent. He has just recently started saying mama relatively consistently > though he hasn't said it at all today. He did not babble much as a baby and > just started attempting to mimic at about 19-20 months. > > Originally my insurance said they would cover the ST, but now they have > denied the claim. I called and they said it was appropriately denied which > we will be appealing. > > I anyone has advice for me or input as to whether it is too soon to really > be getting therapy I would appreciate it. My dd started talking at 9 months > and was speaking in sentences by 20 months and my other son was speaking > fairly well by the age of two, so my experience has been the opposite > extreme. I realize now how unusual it was for them to be so articulate, but > now I don't know what is a realistic expectation. I also know how important > early intervention is based on my experience with my daughters dyslexia (and > possibly more mildly in my 5 yo) and I know that early language delay is the > earliest indicator of dyslexia (though not necessarily an indicator). > > TIA, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2010 Report Share Posted October 4, 2010 The earlier the better -- really. You need a really good OT that knows how to treat all forms of the apraxia -- oral, verbal and limb, and an SLP that knows prompt and treats lots of apraxic kids. If I was you, I'd jump all over it. You want him talking before Kinder if at all possible! On Wed, Sep 29, 2010 at 9:13 AM, <jamiesue32@...> wrote: > > > Hello everyone, my name is and I have a 22 month old son who has been > diagnosed with a language delay with possible oral motor disorder. (I also > have a 7 yo dd, and 5 1/2 yo ds who were early talkers...dd is dyslexic and > I homeschool the two older kids). > > I have been questioning myself all along as to whether or not I am jumping > the gun in getting a speach eval and therapy. I have well meaning > grandparents telling me he is just the 3rd child and that is why he isn't > talking. The things that alerted me to a potential problem were the fact > that he was slightly low tone, had feeding problems that we did not get > therapy for, but in hindsite should have, when he forms words he uses his > mouth in strange ways like moving his jaw and/or tongue from side to side. > He does have some words that he uses spontaneously, but very few that are > consistent. He has just recently started saying mama relatively consistently > though he hasn't said it at all today. He did not babble much as a baby and > just started attempting to mimic at about 19-20 months. > > Originally my insurance said they would cover the ST, but now they have > denied the claim. I called and they said it was appropriately denied which > we will be appealing. > > I anyone has advice for me or input as to whether it is too soon to really > be getting therapy I would appreciate it. My dd started talking at 9 months > and was speaking in sentences by 20 months and my other son was speaking > fairly well by the age of two, so my experience has been the opposite > extreme. I realize now how unusual it was for them to be so articulate, but > now I don't know what is a realistic expectation. I also know how important > early intervention is based on my experience with my daughters dyslexia (and > possibly more mildly in my 5 yo) and I know that early language delay is the > earliest indicator of dyslexia (though not necessarily an indicator). > > TIA, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2010 Report Share Posted October 27, 2010 Welcome, . Everyone here on this board has lots of great advice to share! My son was also dx'd with sensory processing disorder this summer (we are still on a waiting list for the official AS evaluation), and the one thing that jumped out to me from your post was that your son is currently receiving OT only 2x per month for sensory integration. The OTs we have worked with have recommended OT 2xs per week, which is what my son currently receives. It has been hugely helpful to him and has improved his overall disposition as well as helping with specific triggers. For some children, the constant stress of living with the sensory issues can trigger serious anxiety, so they are definitely worth tackling aggressively, and as a plus, this is an area of concern which you can address without prescriptions (not to say that your son may not need them for other reasons, medication is not something I know about at this point). In addition to whatever help you can get from your OT, there are some great books on sensory processing such as " The Out of Sync Child " , " The Out of Sync Child Has Fun " , and " Raising a Sensory Smart Child " . Our local chapter of the Autism Society also just held a session about sensory issues, so it might be worth seeing what your local chapter offers. Uncertainty can also be another huge source of anxiety for kids on the spectrum, and our developmental therapist taught us how to use picture schedules to give our son a sense of what to expect for different parts of each day. It takes the mystery of out it for him, and at age 3, he likes the lists so much that he actually requests them. We also use social stories to help prepare our son for specific situations, and we can clearly see that they work for him (we did one about going to church, and during the service, he used the exact language from the story when he needed to leave his seat). I'm sure the parents here with older kids and lots of experience will have a lot more to add, but hopefully this will give you somewhere to start! Bridget > > Hi. I am new here and very new to Aspergers. My DS is 6 and was just diagnosed as Aspergers. It came as quite a surprise to us. He started having issues a year ago, after a FluMist vaccination. Prior to that time, we had what we thought was a typical little boy. > > We've been everywhere looking for answers. He had an evaluation by a well respected child psychologist who is an expert in autism and bipolar in young children. He told us our DS had anxiety and was gifted. We started him w/ a therapist who felt he had trauma/loss issues from being adopted. > > He got better during the months of Dec, Jan, Feb. In March, it all fell apart again but worse. We sought a child psychiatrist who put him on Celexa. He became suicidal. Yes a 6yo. Taken off that and started on Lamictal. It has helped a lot w/ the anger and rages. Dx w/ Intermittant Explosive Disorder. > > He was also diagnosed this summer w/ Sensory Processing Disorder. He's a sensory seeker and gets OT twice a month. > > Not satisfied, we waited four months for an evaluation w/ a neuropsychologist who diagnosed Aspergers. > > Our DS does very well, academically in school. He's in first grade but reads and does math a few grade levels above. He's been very well behaved but his social skills are starting to lag w/ his peers this year. > > He has developed tics and ocd's over the past year. > > I have an initial child study team meeting next week to figure out where we go from here. I have no idea which direction to go. I'm here to learn and read the archives in hopes of figuring all this out. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2010 Report Share Posted October 27, 2010 Bridget, Well put. Ditto for us on the two times per week OT. From: bridget <beanniferj@...>Subject: ( ) Re: New Here Date: Wednesday, October 27, 2010, 7:50 PM Welcome, . Everyone here on this board has lots of great advice to share! My son was also dx'd with sensory processing disorder this summer (we are still on a waiting list for the official AS evaluation), and the one thing that jumped out to me from your post was that your son is currently receiving OT only 2x per month for sensory integration. The OTs we have worked with have recommended OT 2xs per week, which is what my son currently receives. It has been hugely helpful to him and has improved his overall disposition as well as helping with specific triggers.For some children, the constant stress of living with the sensory issues can trigger serious anxiety, so they are definitely worth tackling aggressively, and as a plus, this is an area of concern which you can address without prescriptions (not to say that your son may not need them for other reasons, medication is not something I know about at this point). In addition to whatever help you can get from your OT, there are some great books on sensory processing such as "The Out of Sync Child", "The Out of Sync Child Has Fun", and "Raising a Sensory Smart Child". Our local chapter of the Autism Society also just held a session about sensory issues, so it might be worth seeing what your local chapter offers.Uncertainty can also be another huge source of anxiety for kids on the spectrum, and our developmental therapist taught us how to use picture schedules to give our son a sense of what to expect for different parts of each day. It takes the mystery of out it for him, and at age 3, he likes the lists so much that he actually requests them. We also use social stories to help prepare our son for specific situations, and we can clearly see that they work for him (we did one about going to church, and during the service, he used the exact language from the story when he needed to leave his seat).I'm sure the parents here with older kids and lots of experience will have a lot more to add, but hopefully this will give you somewhere to start!Bridget>> Hi. I am new here and very new to Aspergers. My DS is 6 and was just diagnosed as Aspergers. It came as quite a surprise to us. He started having issues a year ago, after a FluMist vaccination. Prior to that time, we had what we thought was a typical little boy.> > We've been everywhere looking for answers. He had an evaluation by a well respected child psychologist who is an expert in autism and bipolar in young children. He told us our DS had anxiety and was gifted. We started him w/ a therapist who felt he had trauma/loss issues from being adopted. > > He got better during the months of Dec, Jan, Feb. In March, it all fell apart again but worse. We sought a child psychiatrist who put him on Celexa. He became suicidal. Yes a 6yo. Taken off that and started on Lamictal. It has helped a lot w/ the anger and rages. Dx w/ Intermittant Explosive Disorder.> > He was also diagnosed this summer w/ Sensory Processing Disorder. He's a sensory seeker and gets OT twice a month.> > Not satisfied, we waited four months for an evaluation w/ a neuropsychologist who diagnosed Aspergers.> > Our DS does very well, academically in school. He's in first grade but reads and does math a few grade levels above. He's been very well behaved but his social skills are starting to lag w/ his peers this year.> > He has developed tics and ocd's over the past year.> > I have an initial child study team meeting next week to figure out where we go from here. I have no idea which direction to go. I'm here to learn and read the archives in hopes of figuring all this out.> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2010 Report Share Posted October 27, 2010 Welcome , Bridget gave you some excellent information and from what your wrote it sounds like you're already doing all the right things. I would also recommend checking into Applied Behavior Analysis (ABA) therapy. To find out more about it you can check out Autism Speaks website. I didn't know about it before and we didn't get a proper dx for our son until he was 10. We are starting ABA therapy now and from what I'm reading and being told it is the most effective, research based therapy for all Autism Spectrum kids. Good luck and know we are all here to give support, advice, share nformation and even a place to vent when you need it. :-)ne From: bridget <beanniferj@...>Subject: ( ) Re: New Here Date: Wednesday, October 27, 2010, 7:50 PM Welcome, . Everyone here on this board has lots of great advice to share! My son was also dx'd with sensory processing disorder this summer (we are still on a waiting list for the official AS evaluation), and the one thing that jumped out to me from your post was that your son is currently receiving OT only 2x per month for sensory integration. The OTs we have worked with have recommended OT 2xs per week, which is what my son currently receives. It has been hugely helpful to him and has improved his overall disposition as well as helping with specific triggers.For some children, the constant stress of living with the sensory issues can trigger serious anxiety, so they are definitely worth tackling aggressively, and as a plus, this is an area of concern which you can address without prescriptions (not to say that your son may not need them for other reasons, medication is not something I know about at this point). In addition to whatever help you can get from your OT, there are some great books on sensory processing such as "The Out of Sync Child", "The Out of Sync Child Has Fun", and "Raising a Sensory Smart Child". Our local chapter of the Autism Society also just held a session about sensory issues, so it might be worth seeing what your local chapter offers.Uncertainty can also be another huge source of anxiety for kids on the spectrum, and our developmental therapist taught us how to use picture schedules to give our son a sense of what to expect for different parts of each day. It takes the mystery of out it for him, and at age 3, he likes the lists so much that he actually requests them. We also use social stories to help prepare our son for specific situations, and we can clearly see that they work for him (we did one about going to church, and during the service, he used the exact language from the story when he needed to leave his seat).I'm sure the parents here with older kids and lots of experience will have a lot more to add, but hopefully this will give you somewhere to start!Bridget>> Hi. I am new here and very new to Aspergers. My DS is 6 and was just diagnosed as Aspergers. It came as quite a surprise to us. He started having issues a year ago, after a FluMist vaccination. Prior to that time, we had what we thought was a typical little boy.> > We've been everywhere looking for answers. He had an evaluation by a well respected child psychologist who is an expert in autism and bipolar in young children. He told us our DS had anxiety and was gifted. We started him w/ a therapist who felt he had trauma/loss issues from being adopted. > > He got better during the months of Dec, Jan, Feb. In March, it all fell apart again but worse. We sought a child psychiatrist who put him on Celexa. He became suicidal. Yes a 6yo. Taken off that and started on Lamictal. It has helped a lot w/ the anger and rages. Dx w/ Intermittant Explosive Disorder.> > He was also diagnosed this summer w/ Sensory Processing Disorder. He's a sensory seeker and gets OT twice a month.> > Not satisfied, we waited four months for an evaluation w/ a neuropsychologist who diagnosed Aspergers.> > Our DS does very well, academically in school. He's in first grade but reads and does math a few grade levels above. He's been very well behaved but his social skills are starting to lag w/ his peers this year.> > He has developed tics and ocd's over the past year.> > I have an initial child study team meeting next week to figure out where we go from here. I have no idea which direction to go. I'm here to learn and read the archives in hopes of figuring all this out.> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 Morning Mo Nice to see you again. > > > OOPS oops not shouting > > r u there Jer? do u remember me? > CC sent me your way, I find myself in big trouble with a epam withdrawal and she said you would be the man to talk to. > > Mo > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 Hi suggested I contact you because of big problems with GP who is withdrawing me from epam in a v dangerous way.Have found an advocate from Rethink who is coming to see me on Tuesday, suppose CC thought because you are this side of the pond you might know of a private dr or contact that would ease me out of the control of this dangerous GP.Have gone into Abrupt Discontinuation Syndrome going unconscious on floor is the worst of it but loads more v scary symptoms, GP does not know his arese from his elobow and CC feels I need a private dr or find SOME way of getting the epam so I can increase it back up myself to 25 mg, GP giving me 12 becauise she reckons damage may have already occurred and if I don't act immediately I am seriously at risk for the future.Thaty's a lot to land on your plate and I am q dsperate here Jer.Nice to hear from you too, hope all is well.\MoSSRI medications From: jeremybryce1953@...Date: Thu, 28 Oct 2010 08:05:32 +0000Subject: Re: NEW HERE Morning Mo Nice to see you again. > > > OOPS oops not shouting > > r u there Jer? do u remember me? > CC sent me your way, I find myself in big trouble with a epam withdrawal and she said you would be the man to talk to. > > Mo > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 Hi Mo Sorry to hear that your local GP is behaving in this way, I thought GP's by now had good enough idea of the problem that over rapid withdrawal neither works at best & at worst is dangerous to the patient. It is positive that you are seeing an advocate from RETHINK & I hope that this person is properly up to speed.* I take it that you are still living in the same area yes/no? Before even looking for private Dr's in your area I'm going to suggest that you call C.I.T.A. Office line- 0151 474 9626 (Monday to Thursday 10am-4pm) Helpline - 0151 932 0102 (Monday to Friday 10am-1pm, Weekends and Bank Holidays) Fax - 0151 284 8324 Email - cita@... C.I.T.A. = Council for Information on Tranquillisers, Antidepressants, and Painkillers Though this is a long established support charity for those who seek to withdraw from tranquillisers, they do have credence within NHS circles. It is my hope that CITA will not only give you immediate support, they will also support you or your advocate to rein in your GP. I will also try look for any NHS guidelines (if they are available) that your GP should have followed .............these could be shown by your advocate* to the GP The best way to control these guys is to show them that they are in breech of established protocols. Let me know how you get on with CITA ...............in the mean time I'll look for NHS guidelines or "care pathways" for safe benzo withdrawal > > >> > >> > > OOPS oops not shouting> > >> > > r u there Jer? do u remember me?> > > CC sent me your way, I find myself in big trouble with a epam> > withdrawal and she said you would be the man to talk to.> > >> > > Mo> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 Wow...this is a GOOD question! Let's see...for B. it is cars. You know, the little Matchbox ones that I SWEAR multiply in the toybox almost overnight. He will play with them for HOURS, talking to himself, making "crashing" noises...and line them up endlessly. He used to go nuts when someone touched them or moved one of them. This HAS gotten better though, and he isn't so upset when you move them now. He also uses other toys in weird ways, like he will take Lego blocks and crash them into each other and make like they are planes or something. Weird, but that is B. for ya lol. For J. it is...well...I am not sure. He likes cars too, but he isn't so attatched to them like his brother. His "disability" is his communication mostly and he is getting left behind by his peers because he can't talk as well as a normal 6 year old. He has more meltdowns and defiant behaviors. He does have some issues with being re-directed (mostly at home as his teacher doesn't seem to have any problems yet) and he gets very upset when he has to move from one activity to the next without proper warning. For myself...it is closing doors. I can't STAND a door to be open, unless it is a bedroom door or the front door when it is warm. Cabinets are the worrrrrrrst. I HATE when my family leaves them open lol! Also, and this is going to sound nuts, but keeping the floors free of clutter is another thing that drives me up a wall daily...and with 5 kids...well, you can see what I mean lol! I don't know of a time of day (besides right before we go to bed for the night when I make everyone clean up until it is spotless) when there isn't SOMETHING on the floor...toys, a bowl (GRR), clothes (BIGGER GRR)...whatever. That is part of being a parent though, so I can deal with it. It gets worse in the Summer when everyone is home and on vacation times like Christmas and better now that they are in school. When they are gone all day, I am only driven up a wall for the second half of the day when they get home from school until bedtime lol. In a message dated 10/28/2010 9:29:16 A.M. Eastern Daylight Time, southardengineering@... writes: This reminds me. I haven't heard anyone talk about obsessions on this message board. My kid's obssessions have mostly gone away. When he was 4 1/2 he was obsessed with radio towers, sprinklers, which finally gave way to space (which was a broader topic), and now I would say he really obsesses. We though he was obsessed with babies but this is more of a compulsion disorder symptom we think now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 My 16 year old daughter was diagnosed at 14. She has always had obsessions. The latest one is Justien Bieber and also the computer and her cell phone are obsessions. We get so sick of Bieber songs we could scream! in AL From: "Southard Engineering, Inc." <southardengineering@...> Sent: Wed, October 27, 2010 7:18:04 PMSubject: Re: ( ) New Here , OCD, ADHD, Asperger's, High Functioning Autism, and Autism all fall under and umbrella called PDD, or Post Developmental Disorder. If you read my past post you'll see that I'm a big proponent of Occupational Therapy for the sensory issues. Most people with Asperger's and Autism have sensory integration disorder though everyone is effected differently cause there are all kinds of little things that can be out of whack. The good news is that most of these sensory issues can be improved. I usually try to keep my opinions to myself when it comes to the drugs. But since you obviously had a misdiagnosis I would seriously consider consulting your doctors to discuss discontinuing everything and starting fresh. The defeat Autism Now surveys show that the drugs are all hit or miss. Your child doesn't sound extreme since he is just now falling behind socially . Mine has been behind since age 2 though then we didn't realize what he had. Its also not uncommon to be gifted. The smarter they are the more they can mask the deficits they have so be aware of this. Most Asperger's kids are diagnosed at age 5 or 6 so that is pretty typical. Anxiety I believe is causeed by the constant stress the social situations and sensory issues cause. Plus the part of the brain that corresponds with axiety is typically 7 to 8% oversized in Aspergers and even more in Autism. So the anxiety is also typical. Instead of consulting pcychologist also consider a behaviorist or behavioral therapy. We haven't dont this so I can speak to its effectiveness. There are all types but usually it is recommended. If he has sensory tactile issues that could be where the explosiveness comes from. It might not be a psych thing at all. If you can get OT twice a week try to do that. Usually OT's prefer to go heavy at first and then slow it down. My son has been going twice a week for a year. Even before he got started with the OT we had read a bit on it and had started our own version of therapy at home. When you take your son to a birthday party see if he socialized better with the kids in a bounce house or on a trampoline. Our first two or three social break throughs occured when he was playing on them or in them. Then we figured it out. So we got a trampoline which is great for stress, priopreceptive sensory, and also for vesitibular. It also helps motor planning. So if you can afford a trampoline I highly recommend one. We got a jumpsport softbounce cause they are extra safe and really well built. The netting is really good. Look on ebay for the best prices. There are all kinds of things you can do to help with sensory issues. Check out some books from Readybodies.com. One of these days I'm going to upload an excel file I have with all kinds of backyard activities we have done to help our boy. Today our son made three basketball goals while a friend of his made two. He's not real good but because we practiced so much it gave him a social experience. The point is that if y ou can help reduce or cure the stress your child has to go through each day just trying to control his body it will go a long way in helping himself deal with the other challenges. As you learn more in fact you may realize the the sensory issues are a bigger problem then the Aspergers. So you are on the right track by attacking those too. Please read about it because there is so much you can do at home that will really help push him along and the earlier the better. Don't get too tied up in the diagnosis. OCD and Aspergers commonly overlap. Hopefully the OCD is minor. MY TIP OF THE DAY: Start a daily medical journal. Note the symptoms that appeared on a particulard day or activities your child struggled in. By tracking the symptoms such as verbal commuinciation play, phycial interactive play, eye contact, hearing his name and responding, tactile issues, vestibular issues, obsessions, obessions with parts of objects, etc..... You will slowly figure out what all the sensory issues are this way and you will also be able to target the behaviors cause you will be building a list. The satisfying part to can be that you get too look back and you can see the improvement even though it is normally to slow and you can FEEL like you aren't making any progress you really are. I try to keep a diary type journal every night. Then every 6 months or so I update the progress status on the list of symptoms I've noted. This reminds me. I haven't heard anyone talk about obsessions on this message board. My kid's obssessions have mostly gone away. When he was 4 1/2 he was obsessed with radio towers, sprinklers, which finally gave way to space (which was a broader topic), and now I would say he really obsesses. We though he was obsessed with babies but this is more of a compulsion disorder symptom we think now. What kind of obsessions are out there? From: mama2nickle <hausgroene@...>Subject: ( ) New Here Date: Wednesday, October 27, 2010, 6:14 PM Hi. I am new here and very new to Aspergers. My DS is 6 and was just diagnosed as Aspergers. It came as quite a surprise to us. He started having issues a year ago, after a FluMist vaccination. Prior to that time, we had what we thought was a typical little boy.We've been everywhere looking for answers. He had an evaluation by a well respected child psychologist who is an expert in autism and bipolar in young children. He told us our DS had anxiety and was gifted. We started him w/ a therapist who felt he had trauma/loss issues from being adopted. He got better during the months of Dec, Jan, Feb. In March, it all fell apart again but worse. We sought a child psychiatrist who put him on Celexa. He became suicidal. Yes a 6yo. Taken off that and started on Lamictal. It has helped a lot w/ the anger and rages. Dx w/ Intermittant Explosive Disorder.He was also diagnosed this summer w/ Sensory Processing Disorder. He's a sensory seeker and gets OT twice a month.Not satisfied, we waited four months for an evaluation w/ a neuropsychologist who diagnosed Aspergers.Our DS does very well, academically in school. He's in first grade but reads and does math a few grade levels above. He's been very well behaved but his social skills are starting to lag w/ his peers this year.He has developed tics and ocd's over the past year.I have an initial child study team meeting next week to figure out where we go from here. I have no idea which direction to go. I'm here to learn and read the archives in hopes of figuring all this out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 , All kids get obsessive. Heck one would say I was very obssesive. I was obsessed with Star Wars like crazy, stamps, comic books, etc.... Now from you post I can't judge one way or the other if those are ASPIE obessions. For sake of the newcommers I'll expand on the conversation. What seperates an Aspie obsessions from a typical teen's obsessions is that it is usually singular and the ASPIE wants to know everything there is to know about that particular topic. They will tend to think everyone wants to hear about that topic. Now if Beiber is a true ASPIE obsession I really do feel for you.......Gosh talk about an overated pop star. The few videos I've seen have him dancing with women who are all obsviously way older than him....kind of creepy.. If its the only thing she thinks about all the time that is an ASPIE like obsession. Our son lived and breathed radio towers and sprinkler systems......now that was wierd! Me being an engineer encouraged him until it was too late. When we found out he had Asperger's we would change the topic of conversation and eventually we kind of squeezed out the obsessions. It also helps to get them thinking about very broad obsessions. This takes them in the opposite direction of ASPIE tendencies which is to get obssesive about narrower and narrower things as they age. In other words getting worse. From: mama2nickle <hausgroene@...>Subject: ( ) New Here Date: Wednesday, October 27, 2010, 6:14 PM Hi. I am new here and very new to Aspergers. My DS is 6 and was just diagnosed as Aspergers. It came as quite a surprise to us. He started having issues a year ago, after a FluMist vaccination. Prior to that time, we had what we thought was a typical little boy.We've been everywhere looking for answers. He had an evaluation by a well respected child psychologist who is an expert in autism and bipolar in young children. He told us our DS had anxiety and was gifted. We started him w/ a therapist who felt he had trauma/loss issues from being adopted. He got better during the months of Dec, Jan, Feb. In March, it all fell apart again but worse. We sought a child psychiatrist who put him on Celexa. He became suicidal. Yes a 6yo. Taken off that and started on Lamictal. It has helped a lot w/ the anger and rages. Dx w/ Intermittant Explosive Disorder.He was also diagnosed this summer w/ Sensory Processing Disorder. He's a sensory seeker and gets OT twice a month.Not satisfied, we waited four months for an evaluation w/ a neuropsychologist who diagnosed Aspergers.Our DS does very well, academically in school. He's in first grade but reads and does math a few grade levels above. He's been very well behaved but his social skills are starting to lag w/ his peers this year.He has developed tics and ocd's over the past year.I have an initial child study team meeting next week to figure out where we go from here. I have no idea which direction to go. I'm here to learn and read the archives in hopes of figuring all this out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 Yeah, that makes more sense. Let's see...I know I went through an obsession with the Amish people a few years ago...I even dressed like one, acted like one, wanted to learn German (yah NOT happening lol) and everything. I would actually walk around my city like that! Now THAT is embarrassing. Please don't laugh...heh. With the boys, it is hard to say...B. really doesn't talk too much about one topic only because he really doesn't talk much. He does talk endlessly (when he feels like it) about SpongeBob and cartoons. Does that count? J. really isn't showing any of that either because he likes to talk, but noone can understand what it is he is talking about most of the time. He will talk and talk and talk about something, but I can't make it out to determine if it is truly an Aspie kind of thing. I don't think he is quite there like his brother...he is truly only operating at a 3 to 4 year old level right now and he will be 7 in March. Great point! Thanks for clarifying that. In a message dated 10/29/2010 7:30:23 A.M. Eastern Daylight Time, southardengineering@... writes: , All kids get obsessive. Heck one would say I was very obssesive. I was obsessed with Star Wars like crazy, stamps, comic books, etc.... Now from you post I can't judge one way or the other if those are ASPIE obessions. For sake of the newcommers I'll expand on the conversation. What seperates an Aspie obsessions from a typical teen's obsessions is that it is usually singular and the ASPIE wants to know everything there is to know about that particular topic. They will tend to think everyone wants to hear about that topic. Now if Beiber is a true ASPIE obsession I really do feel for you.......Gosh talk about an overated pop star. The few videos I've seen have him dancing with women who are all obsviously way older than him....kind of creepy.. If its the only thing she thinks about all the time that is an ASPIE like obsession. Our son lived and breathed radio towers and sprinkler systems......now that was wierd! Me being an engineer encouraged him until it was too late. When we found out he had Asperger's we would change the topic of conversation and eventually we kind of squeezed out the obsessions. It also helps to get them thinking about very broad obsessions. This takes them in the opposite direction of ASPIE tendencies which is to get obssesive about narrower and narrower things as they age. In other words getting worse. From: mama2nickle <hausgroene@...>Subject: ( ) New Here Date: Wednesday, October 27, 2010, 6:14 PM Hi. I am new here and very new to Aspergers. My DS is 6 and was just diagnosed as Aspergers. It came as quite a surprise to us. He started having issues a year ago, after a FluMist vaccination. Prior to that time, we had what we thought was a typical little boy.We've been everywhere looking for answers. He had an evaluation by a well respected child psychologist who is an expert in autism and bipolar in young children. He told us our DS had anxiety and was gifted. We started him w/ a therapist who felt he had trauma/loss issues from being adopted. He got better during the months of Dec, Jan, Feb. In March, it all fell apart again but worse. We sought a child psychiatrist who put him on Celexa. He became suicidal. Yes a 6yo. Taken off that and started on Lamictal. It has helped a lot w/ the anger and rages. Dx w/ Intermittant Explosive Disorder.He was also diagnosed this summer w/ Sensory Processing Disorder. He's a sensory seeker and gets OT twice a month.Not satisfied, we waited four months for an evaluation w/ a neuropsychologist who diagnosed Aspergers.Our DS does very well, academically in school. He's in first grade but reads and does math a few grade levels above. He's been very well behaved but his social skills are starting to lag w/ his peers this year.He has developed tics and ocd's over the past year.I have an initial child study team meeting next week to figure out where we go from here. I have no idea which direction to go. I'm here to learn and read the archives in hopes of figuring all this out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 AMEN!!! I don't think it would be so bad if she didn't do ONE song over and over and over again! Mom to my 4 girls Madeline, Cayla, Arabella, & Vincenza "You are the TRIP I did not take You are the PEARLS I cannot buy You are the blue Italian LAKE YOU are my piece of foreign SKY" ---Anne ---- ( ) New Here Date: Wednesday, October 27, 2010, 6:14 PM Hi. I am new here and very new to Aspergers. My DS is 6 and was just diagnosed as Aspergers. It came as quite a surprise to us. He started having issues a year ago, after a FluMist vaccination. Prior to that time, we had what we thought was a typical little boy. We've been everywhere looking for answers. He had an evaluation by a well respected child psychologist who is an expert in autism and bipolar in young children. He told us our DS had anxiety and was gifted. We started him w/ a therapist who felt he had trauma/loss issues from being adopted. He got better during the months of Dec, Jan, Feb. In March, it all fell apart again but worse. We sought a child psychiatrist who put him on Celexa. He became suicidal. Yes a 6yo. Taken off that and started on Lamictal. It has helped a lot w/ the anger and rages. Dx w/ Intermittant Explosive Disorder. He was also diagnosed this summer w/ Sensory Processing Disorder. He's a sensory seeker and gets OT twice a month. Not satisfied, we waited four months for an evaluation w/ a neuropsychologist who diagnosed Aspergers. Our DS does very well, academically in school. He's in first grade but reads and does math a few grade levels above. He's been very well behaved but his social skills are starting to lag w/ his peers this year. He has developed tics and ocd's over the past year. I have an initial child study team meeting next week to figure out where we go from here. I have no idea which direction to go. I'm here to learn and read the archives in hopes of figuring all this out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 D used to do the matchbox car thing too when he was younger. They were always in some sort of lineup (perfectly straight of course). Then he would just leave them there. Dh would take one and just slightly move it (he would line up probably 50-100 cars sometimes) and as soon as D would walk through the room again, hed see the crooked car, straighten it, then move on. They say D also has anxiety with ocd tendencies, so sometimes the two seem to overlap. He is very into music, a few particular bands that he will shift total focus to and from. He knows a lot about them, listens to their songs with lyrics in front of him so he can learn them all, can recite albums by year, every song on each album, etc. He is determined that he will have a band one day, and tells me he's learning from what they do how to do it, play, put on a show, etc. I believe him!He is also very into some video game/cartoon characters (pokemon and sonic). He knows every pokemon by number from the catalog thing they have (I think there are about 500?!). He makes up his own games, and does things like goes on the computer and makes "sonic cards" that are like the pokemon game, but he pastes in sonic characters and gives them values etc. Both of these things he absolutely talks about as if everyone else is interested and understands, which we don't! I've told him I just don't get it, his father will tell him he's tired of hearing about it...we get a blink, then he keeps going. PamSent on the Sprint® Now Network from my BlackBerry®From: kristieannesmama@...Sender: Date: Thu, 28 Oct 2010 10:05:45 -0400 (EDT)< >Reply Subject: Re: ( ) New Here Wow...this is a GOOD question! Let's see...for B. it is cars. You know, the little Matchbox ones that I SWEAR multiply in the toybox almost overnight. He will play with them for HOURS, talking to himself, making "crashing" noises...and line them up endlessly. He used to go nuts when someone touched them or moved one of them. This HAS gotten better though, and he isn't so upset when you move them now. He also uses other toys in weird ways, like he will take Lego blocks and crash them into each other and make like they are planes or something. Weird, but that is B. for ya lol. For J. it is...well...I am not sure. He likes cars too, but he isn't so attatched to them like his brother. His "disability" is his communication mostly and he is getting left behind by his peers because he can't talk as well as a normal 6 year old. He has more meltdowns and defiant behaviors. He does have some issues with being re-directed (mostly at home as his teacher doesn't seem to have any problems yet) and he gets very upset when he has to move from one activity to the next without proper warning. For myself...it is closing doors. I can't STAND a door to be open, unless it is a bedroom door or the front door when it is warm. Cabinets are the worrrrrrrst. I HATE when my family leaves them open lol! Also, and this is going to sound nuts, but keeping the floors free of clutter is another thing that drives me up a wall daily...and with 5 kids...well, you can see what I mean lol! I don't know of a time of day (besides right before we go to bed for the night when I make everyone clean up until it is spotless) when there isn't SOMETHING on the floor...toys, a bowl (GRR), clothes (BIGGER GRR)...whatever. That is part of being a parent though, so I can deal with it. It gets worse in the Summer when everyone is home and on vacation times like Christmas and better now that they are in school. When they are gone all day, I am only driven up a wall for the second half of the day when they get home from school until bedtime lol. In a message dated 10/28/2010 9:29:16 A.M. Eastern Daylight Time, southardengineering@... writes:This reminds me. I haven't heard anyone talk about obsessions on this message board. My kid's obssessions have mostly gone away. When he was 4 1/2 he was obsessed with radio towers, sprinklers, which finally gave way to space (which was a broader topic), and now I would say he really obsesses. We though he was obsessed with babies but this is more of a compulsion disorder symptom we think now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 For my 3 year old, the obsession is trains, trains, trains! He would skip meals to " choo choo " if we would let him, and has been known to get out of bed in the middle of the night to play trains. He lines up wooden blocks and pretends they are freight cars. He also likes to pretend that things are train tracks and we are trains. Like at the park, he will run down a sidewalk and pretend that he is and I am Percy. Going up stairs, he will call out for a " back engine " . A little short sidewalk is a siding for trains to park on. At the beach this summer, we found tire tracks in the sand, and after that, his favorite thing to do was " chuff " down the tracks (we must have gone miles!). When not thinking about trains, my son's other favorite topic is things to do with streets - there are specific streets he gets excited to drive down (not because of where they go, but because he likes the names, and at 3 he can read the signs), traffic rules like right turn on red are fascinating, and he just loves dead end streets. A new thrill is seeing cars which have backed into parking spaces (not even watching them back in, just seeing parked that way). When my son plays with his developmental therapist, he always wants to crash her car or train; she has been trying to teach him to get his little lego train guy out and ask if the driver of her car or train is okay - instead he will ask, " Is your car okay? " . Guess that shows where his interests lie! Bridget > > Wow...this is a GOOD question! Let's see...for B. it is cars. You know, the > little Matchbox ones that I SWEAR multiply in the toybox almost overnight. > He will play with them for HOURS, talking to himself, making " crashing " > noises...and line them up endlessly. He used to go nuts when someone touched > them or moved one of them. This HAS gotten better though, and he isn't so > upset when you move them now. He also uses other toys in weird ways, like he > will take Lego blocks and crash them into each other and make like they > are planes or something. Weird, but that is B. for ya lol. > > For J. it is...well...I am not sure. He likes cars too, but he isn't so > attatched to them like his brother. His " disability " is his communication > mostly and he is getting left behind by his peers because he can't talk as well > as a normal 6 year old. He has more meltdowns and defiant behaviors. He > does have some issues with being re-directed (mostly at home as his teacher > doesn't seem to have any problems yet) and he gets very upset when he has to > move from one activity to the next without proper warning. > > For myself...it is closing doors. I can't STAND a door to be open, unless > it is a bedroom door or the front door when it is warm. Cabinets are the > worrrrrrrst. I HATE when my family leaves them open lol! Also, and this is > going to sound nuts, but keeping the floors free of clutter is another thing > that drives me up a wall daily...and with 5 kids...well, you can see what I > mean lol! I don't know of a time of day (besides right before we go to bed > for the night when I make everyone clean up until it is spotless) when > there isn't SOMETHING on the floor...toys, a bowl (GRR), clothes (BIGGER > GRR)...whatever. That is part of being a parent though, so I can deal with it. > It gets worse in the Summer when everyone is home and on vacation times > like Christmas and better now that they are in school. When they are gone all > day, I am only driven up a wall for the second half of the day when they > get home from school until bedtime lol. > > > In a message dated 10/28/2010 9:29:16 A.M. Eastern Daylight Time, > southardengineering@... writes: > > This reminds me. I haven't heard anyone talk about obsessions on this > message board. My kid's obssessions have mostly gone away. When he was 4 1/2 > he was obsessed with radio towers, sprinklers, which finally gave way to > space (which was a broader topic), and now I would say he really obsesses. > We though he was obsessed with babies but this is more of a compulsion > disorder symptom we think now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 Pam, Sounds very typical! From: pgrosner@... <pgrosner@...>Subject: Re: ( ) New Here Date: Friday, October 29, 2010, 9:31 AM D used to do the matchbox car thing too when he was younger. They were always in some sort of lineup (perfectly straight of course). Then he would just leave them there. Dh would take one and just slightly move it (he would line up probably 50-100 cars sometimes) and as soon as D would walk through the room again, hed see the crooked car, straighten it, then move on. They say D also has anxiety with ocd tendencies, so sometimes the two seem to overlap. He is very into music, a few particular bands that he will shift total focus to and from. He knows a lot about them, listens to their songs with lyrics in front of him so he can learn them all, can recite albums by year, every song on each album, etc. He is determined that he will have a band one day, and tells me he's learning from what they do how to do it, play, put on a show, etc. I believe him!He is also very into some video game/cartoon characters (pokemon and sonic). He knows every pokemon by number from the catalog thing they have (I think there are about 500?!). He makes up his own games, and does things like goes on the computer and makes "sonic cards" that are like the pokemon game, but he pastes in sonic characters and gives them values etc. Both of these things he absolutely talks about as if everyone else is interested and understands, which we don't! I've told him I just don't get it, his father will tell him he's tired of hearing about it...we get a blink, then he keeps going. Pam Sent on the Sprint® Now Network from my BlackBerry® From: kristieannesmama@... Sender: Date: Thu, 28 Oct 2010 10:05:45 -0400 (EDT) < > Reply Subject: Re: ( ) New Here Wow...this is a GOOD question! Let's see...for B. it is cars. You know, the little Matchbox ones that I SWEAR multiply in the toybox almost overnight. He will play with them for HOURS, talking to himself, making "crashing" noises...and line them up endlessly. He used to go nuts when someone touched them or moved one of them. This HAS gotten better though, and he isn't so upset when you move them now. He also uses other toys in weird ways, like he will take Lego blocks and crash them into each other and make like they are planes or something. Weird, but that is B. for ya lol. For J. it is...well...I am not sure. He likes cars too, but he isn't so attatched to them like his brother. His "disability" is his communication mostly and he is getting left behind by his peers because he can't talk as well as a normal 6 year old. He has more meltdowns and defiant behaviors. He does have some issues with being re-directed (mostly at home as his teacher doesn't seem to have any problems yet) and he gets very upset when he has to move from one activity to the next without proper warning. For myself...it is closing doors. I can't STAND a door to be open, unless it is a bedroom door or the front door when it is warm. Cabinets are the worrrrrrrst. I HATE when my family leaves them open lol! Also, and this is going to sound nuts, but keeping the floors free of clutter is another thing that drives me up a wall daily...and with 5 kids...well, you can see what I mean lol! I don't know of a time of day (besides right before we go to bed for the night when I make everyone clean up until it is spotless) when there isn't SOMETHING on the floor...toys, a bowl (GRR), clothes (BIGGER GRR)...whatever. That is part of being a parent though, so I can deal with it. It gets worse in the Summer when everyone is home and on vacation times like Christmas and better now that they are in school. When they are gone all day, I am only driven up a wall for the second half of the day when they get home from school until bedtime lol. In a message dated 10/28/2010 9:29:16 A.M. Eastern Daylight Time, southardengineering@... writes: This reminds me. I haven't heard anyone talk about obsessions on this message board. My kid's obssessions have mostly gone away. When he was 4 1/2 he was obsessed with radio towers, sprinklers, which finally gave way to space (which was a broader topic), and now I would say he really obsesses. We though he was obsessed with babies but this is more of a compulsion disorder symptom we think now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 Hi JThis guy insists that he is right and frm what he says he is following NHS guidkless, he does not accep that what I am going through is REAL, psychsomatic he says... Nothing to do with recepors screaming from deprivation I asked???He knows he has cocked. had emergency dr out last weekend who said so himself and confifrmed in am in abrupt withdrawl syndrome but OF COURSE he will not put that in his report as it makes my GP legally liable.CITA have been hgelping me, they saqid he should put me back to to 25 mg which is more orless what CC advised but only when I threeatened to sign myself into hospital he agreed to raise from to 12 mg from .5 nd i had only been on 7.5 for two days, for two weeks before that i WQAS ON 8 MG, HE SWITCHED ME FROM 20 Nitrazepam plus 10 Temazepan to 10 epam though I CONTRIBUTED TO THE OCK UP A BIT MYSELF THROUGH DISCALCULIA.i ASKED HIM TO PHONEitaAND HE RFUSED, i SAID AT LEAST LKISTEN TO THE PATIEENTS EXPERIENCE VIA cita AND HE HE SAID HAH, the paqtients experience, anecdotal shit sit shit\I work with swcience he says and science tells that you are not in the sate you are in simply from withdrawals, all in my mindm, well nmost ofit is his thinking coas THE SCIENCE saqysw swo which makes me think ns REGS IS WHAT HE IS FOLLOWING.tHAN jM, APPRECIATE YOUR HELP.yES |i AM still at the same address.Many thankosstilln bed here, in bed a lot, feeling v fluey, tinnitus, dizziness, nausea, have vomited which is abrupt thingee symptoms as it going unconscious. That has stoped.Have taken matters into my own handsand increased back up to 25, CC said I NEED TO TAKE CONTROL, FIND A DR, WHERE DO I GET TGHEMONEY FOR THAT, I THOUGHT MAYBE I SHULD ORDER ON THE NET BUT MAYBE I AM GETTING AHREADOF MYSELF, THIS LOVELY ADVOCATE WIOMAN MAY WELL PERSUADE HIM TO INCREASE MY SCRIPT \ANDAND\I AM THINKIN j IF I PRESENT MYSELF THERE MAYBE THIS COMING fRIDAY WITH THE ADVOCATE AND SHE TELLS HIMN I am increased, that i FELT I HAD TO LOOK AFTERMYSELF AND TAKE CONTRO,L, THEN IS HE NOT SNOOKED TO AN EXTENT???IF I AM ON 25 3END OF NEXT WEEK,M CAN HE, WITHOUT PUTTING ME AT SERIOUS RISK, TRY TO GET ME TO GO BAQCK DOWN TO 12 wOULD LIKE YOUR OPINION ON WHETHER YOU THINK THIS IS A GOOD TACTIC?mONG? IT COULDKILL MNE.\ Hi Mo Sorry to hear that your local GP is behaving in this way, I thought GP's by now had good enough idea of the problem that over rapid withdrawal neither works at best & at worst is dangerous to the patient. It is positive that you are seeing an advocate from RETHINK & I hope that this person is properly up to speed.* I take it that you are still living in the same area yes/no? Before even looking for private Dr's in your area I'm going to suggest that you call C.I.T.A. Office line- 0151 474 9626 (Monday to Thursday 10am-4pm) Helpline - 0151 932 0102 (Monday to Friday 10am-1pm, Weekends and Bank Holidays) Fax - 0151 284 8324 Email - cita@... C.I.T.A. = Council for Information on Tranquillisers, Antidepressants, and Painkillers Though this is a long established support charity for those who seek to withdraw from tranquillisers, they do have credence within NHS circles. It is my hope that CITA will not only give you immediate support, they will also support you or your advocate to rein in your GP. I will also try look for any NHS guidelines (if they are available) that your GP should have followed .............these could be shown by your advocate* to the GP The best way to control these guys is to show them that they are in breech of established protocols. Let me know how you get on with CITA ...............in the mean time I'll look for NHS guidelines or "care pathways" for safe benzo withdrawal > > >> > >> > > OOPS oops not shouting> > >> > > r u there Jer? do u remember me?> > > CC sent me your way, I find myself in big trouble with a epam> > withdrawal and she said you would be the man to talk to.> > >> > > Mo> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2010 Report Share Posted November 2, 2010 - I just saw your post. I'm not on the boards much these days. With your son's late onset and the sudden symptoms or changes in them, I'd suggest you look into PANDAS - its associated with Strep. There are a lot of online resources, and if it were me, I'd rule out that before going on trials of pharmaceuticals. It is associated with OCD and sudden onset of tics and obsessions. Also with the neurologist, I'd think they would've ruled seizure activity out...? HTH. > > Hi. I am new here and very new to Aspergers. My DS is 6 and was just diagnosed as Aspergers. It came as quite a surprise to us. He started having issues a year ago, after a FluMist vaccination. Prior to that time, we had what we thought was a typical little boy. > > We've been everywhere looking for answers. He had an evaluation by a well respected child psychologist who is an expert in autism and bipolar in young children. He told us our DS had anxiety and was gifted. We started him w/ a therapist who felt he had trauma/loss issues from being adopted. > > He got better during the months of Dec, Jan, Feb. In March, it all fell apart again but worse. We sought a child psychiatrist who put him on Celexa. He became suicidal. Yes a 6yo. Taken off that and started on Lamictal. It has helped a lot w/ the anger and rages. Dx w/ Intermittant Explosive Disorder. > > He was also diagnosed this summer w/ Sensory Processing Disorder. He's a sensory seeker and gets OT twice a month. > > Not satisfied, we waited four months for an evaluation w/ a neuropsychologist who diagnosed Aspergers. > > Our DS does very well, academically in school. He's in first grade but reads and does math a few grade levels above. He's been very well behaved but his social skills are starting to lag w/ his peers this year. > > He has developed tics and ocd's over the past year. > > I have an initial child study team meeting next week to figure out where we go from here. I have no idea which direction to go. I'm here to learn and read the archives in hopes of figuring all this out. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2010 Report Share Posted November 6, 2010 Hi, I am also new here. Pam, I love the statement that " his father will tell him he's tired of hearing about it...we get a blink, then he keeps going " . It gave me a good laugh cause that's my Jordan too. My 6yo daughter was diagnosed with ADHD almost a year ago but before that I just thought that she was just immature for her age and just had some quirky traits. She was in kindergarten last year and when her teacher voiced her concerns I sat back and really watched her. After she was diagnosed with ADHD I kept telling everyone that I thought that she might have a little of something else because of the her different behaviors. She was finally diagnosed at the end of the last school year that she has AS. One of her many quirks is that if you pumped into her she would have a meltdown and think that you pushed her. After dealing with this for years and after her diagnosis I realized that I had to look at her in a hole new light and try to find ways to help her. It was a real problem at home and at school. I came up with a game that I called the Push Me Game. I would walk past her and pump into her arm and say " oops I'm sorry " and then I told her that it was her turn. She loved playing this game. I then explained to her what a push was. I put my hands on her and gave her a small push which made her fall back on her bed. After doing this for a little while is has greatly helped. She is still sensitive to touch but not as much as she used to be. I am in constant contact with her teacher and her teacher also used the " oops i'm sorry " with her and it helped during the school hours as well. Jordan would also repeat her self over and over and over again. Whether it was a question (which I had to keep answering) or just a statement. I learned that she is a visual learner and not a verbal individual. Now when she asks me a question and asks over again, I make her repeat my response. If she does then she quits asking me. I've also found that if I ask her to do something I will ask her " what did mommy say " , if she answers me then she will more likely do the task. Other times she will tell me how I am to verbally respond back to her. An example, I can't just say I love you to, it has to be I love you Jordan. If I don't she will get really upset and has a meltdown until I do. I'll also remind her that, don't tell mommy what to say and that I can say what I want, but most of the time its just easier to say it how she wants. Jordan's school guidance counselor recommended a wrap around service that was held at her school which offered social and behavior problems (which she defiantly needed). I requested the school to write up an IEP for her and told them that she has Aspies. After several tests the school agreed and I'm happy to find out that our school even has an Autistic teacher who will also work with her. I decided to hold her back and repeat kindergarten because she wasn't catching on with her learning. If she learned something she had a hard time transferring that information into the next level of learning. The school is going to be using alot more visual aides for her. Her greatest strengths are puzzles, drawling and building with legos. It's amazing watching her. She will spend hours putting together the same puzzle over and over again. She will look over the pieces to find the next one she needs instead of just picking them up and guessing. She can also build things with legos using the book and after that she will remember how to put it back together by memory. I'm glad to be a part of this group and hear everyone stories and examples that they use. > > > From: pgrosner@... <pgrosner@...> > Subject: Re: ( ) New Here > > Date: Friday, October 29, 2010, 9:31 AM > > >  > > > > D used to do the matchbox car thing too when he was younger. They were always in some sort of lineup (perfectly straight of course). Then he would just leave them there. Dh would take one and just slightly move it (he would line up probably 50-100 cars sometimes) and as soon as D would walk through the room again, hed see the crooked car, straighten it, then move on. They say D also has anxiety with ocd tendencies, so sometimes the two seem to overlap. > > He is very into music, a few particular bands that he will shift total focus to and from. He knows a lot about them, listens to their songs with lyrics in front of him so he can learn them all, can recite albums by year, every song on each album, etc. He is determined that he will have a band one day, and tells me he's learning from what they do how to do it, play, put on a show, etc. I believe him! > > He is also very into some video game/cartoon characters (pokemon and sonic). He knows every pokemon by number from the catalog thing they have (I think there are about 500?!). He makes up his own games, and does things like goes on the computer and makes " sonic cards " that are like the pokemon game, but he pastes in sonic characters and gives them values etc. Both of these things he absolutely talks about as if everyone else is interested and understands, which we don't! I've told him I just don't get it, his father will tell him he's tired of hearing about it...we get a blink, then he keeps going. > > Pam > Sent on the Sprint® Now Network from my BlackBerry® > > > From: kristieannesmama@... > Sender: > Date: Thu, 28 Oct 2010 10:05:45 -0400 (EDT) > < > > Reply > Subject: Re: ( ) New Here > >  > > > Wow...this is a GOOD question! Let's see...for B. it is cars. You know, the little Matchbox ones that I SWEAR multiply in the toybox almost overnight. He will play with them for HOURS, talking to himself, making " crashing " noises...and line them up endlessly. He used to go nuts when someone touched them or moved one of them. This HAS gotten better though, and he isn't so upset when you move them now. He also uses other toys in weird ways, like he will take Lego blocks and crash them into each other and make like they are planes or something. Weird, but that is B. for ya lol. >  > For J. it is...well...I am not sure. He likes cars too, but he isn't so attatched to them like his brother. His " disability " is his communication mostly and he is getting left behind by his peers because he can't talk as well as a normal 6 year old. He has more meltdowns and defiant behaviors. He does have some issues with being re-directed (mostly at home as his teacher doesn't seem to have any problems yet) and he gets very upset when he has to move from one activity to the next without proper warning. >  > For myself...it is closing doors. I can't STAND a door to be open, unless it is a bedroom door or the front door when it is warm. Cabinets are the worrrrrrrst. I HATE when my family leaves them open lol! Also, and this is going to sound nuts, but keeping the floors free of clutter is another thing that drives me up a wall daily...and with 5 kids...well, you can see what I mean lol! I don't know of a time of day (besides right before we go to bed for the night when I make everyone clean up until it is spotless) when there isn't SOMETHING on the floor...toys, a bowl (GRR), clothes (BIGGER GRR)...whatever. That is part of being a parent though, so I can deal with it. It gets worse in the Summer when everyone is home and on vacation times like Christmas and better now that they are in school. When they are gone all day, I am only driven up a wall for the second half of the day when they get home from school until bedtime lol. >  > > In a message dated 10/28/2010 9:29:16 A.M. Eastern Daylight Time, southardengineering@... writes: > > This reminds me. I haven't heard anyone talk about obsessions on this message board. My kid's obssessions have mostly gone away. When he was 4 1/2 he was obsessed with radio towers, sprinklers, which finally gave way to space (which was a broader topic), and now I would say he really obsesses.  We though he was obsessed with babies but this is more of a compulsion disorder symptom we think now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2010 Report Share Posted November 15, 2010 Tina, Join Dr. Jaquelyn McCandless's LDN for Autism group, even if your child doesn't have autism, Dr. Mccandless deals with many children with various autoimmune system diseases and basically recommends the same diet, supplements, LDN, etc. Join her group and read the FILES section, much info. there. Autism/LDN Autism_LDN/ LDN user 7 yrs ============================== > > Hi, Im new here and my 5 y/o son just started LDN 2 nights ago. > We decided to give LDN a try for a few reasons that all seem to lead to inflammation. He has a right thalamic brain tumor.. appears to be low grade glioma, possible astrocytoma (due to size and location, unable to biopsy at this time). We have been lucky enough to keep it stable with lots of suppliments and diet. He also has sensory processing dysfunction, speech apraxia and is globally developmentally delayed. What put us over the edge is he had a bad case of bronchitis a month ago. The doctor ordered albuterol via a nebulizer (this kid does not have asthma) and shortly after he developed verbal/motor tics.. We stopped the medication but the tics have stayed. We tried clonidine but with no success, and after stopping that his tics actually increased along with his anxiety. By this point I researched every possible " underlining " cause I could think of and only 1 thing could explain all of his issues.. immune system issues w/ inflammation. Tomorrow he will have bloodwork to rule out PANDAS. > > So my question is, has anyone sucessfully used LDN for any of these issues, and for immediate purposes have you sucessfully used it and seen improvement with verbal/motor tics (regardless if they were induced by a stimulant)? > > Thanks > Tina > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2010 Report Share Posted December 11, 2010 Welcome to the group. I think you'll find lots of support, ideas, and hope here. I can't write much now but see if you can get your son into see an occupational therapist 2 times a week to help with any sensory issues he might have. Helping your son manage his body will go a long ways towards helping reduce his anxiety, repetitive behaviors, and most important of all sensory defensiveness that can lead to isolating behaviors. The OT has really helped with my son. I also think a big part of the help has also been that his father (me) has made him stay active. I haven't been as consistent lately but I try to make sure he practices at least 5 exercises a day. I try to have a variety so that priopreceptive, vestibular, ocular, tactile,etc is all utilized a bit every day. For example one day I might have him 1) push the lawn mower 2) bounce on a trampoline 3) swing on a swing in some fashion 4) run around the house a few times 5) Do leg lifts The next day we might 1) ride his bike (which after having training wheels on for a year he has never had difficulty with) 2) push ups (girl style) 3) shoot a basketball a few times 4) bounce on the trampoline 5) jumping jacks. The next day we might 1) do a dot drill 2) tire swing 3) try catching or throwing a ball 5) sprints 6) monkey bars. Now your son is only five and there will be plenty of ups and downs. An a lot of the stuff in my lists above had to be practiced for quite a while before he could do them. While riding a bike has been easy for him. Learning to self propell on a swing took months of working on it. He used to do the monkey bars but now he can't or won't. There are hundreds of outdoor games and exercises you can do. Try to make doing the exercises a goal. Keep it fun, and let him pick them out sometimes. You might have to push some days but I believe developing the skills to manage one's body goe a long way in helping them 1) socialize 2) pay attention better in school 3) sit still 4) tamtrums, etc From: Kim Elliott <kimkelliott@...>Subject: ( ) New hereAspergerssupport Date: Saturday, December 11, 2010, 2:39 PM My son, , age 5, was just diagnosed with Aspergers a couple of days ago. We're still waiting to see what services are available for him. Just wanted to say hi.Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2010 Report Share Posted December 12, 2010 Hi Kim and welcome to the group. Good luck on your journey with your son and I wish you all the best. Hope you like the group and that it makes life a little easier for you. :-) Take care!ne From: Kim Elliott <kimkelliott@...>Subject: ( ) New hereAspergerssupport Date: Saturday, December 11, 2010, 2:39 PM My son, , age 5, was just diagnosed with Aspergers a couple of days ago. We're still waiting to see what services are available for him. Just wanted to say hi.Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 Dr. Bihari sees only a limited role for LDN in regard to Lyme disease: should an infected person develop late complications of Lyme, those may well have an autoimmune basis and in those circumstances LDN should be useful. Dr. Gluck posted by , LDN user 7 yrs for progressive MS Quote Link to comment Share on other sites More sharing options...
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