Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Hi Maggie, What an informative post! As I haven't been on this board for so long yet, I haven't read all the posts of course. I am glad you have sent this one!!! Thanks, IsabellaLunaIam2@... wrote: Tig, if you are talking about NCCP also known as spasm pains maybe Debbi's famous post about that will be helpful to you. I am copying it below. It is well worth reading. Hope it helps. Maggie Alabama Chest pains, heartburn, acid reflux, spasm pains, NCCPs.... what the heck is all of this stuff anyway???? (aka: Debbi's Dissertation on Dysfunctional Dysphagia Diagnoses) Here's some info I've put together on differences between "heartburn" and the "chest pains/spasm pains" that are related to achalasia. The official medical term that I've found for the "spasm pain" is "NCCP" or Non Cardiac Chest Pain. There are multiple terms used for "heartburn" including: acid indigestion, acid reflux, GERD/GORD, etc. In my pre-achalasia days, I would have "indigestion/heartburn" once in a while (after a particularly large, fatty, acidic meal, etc.), maybe once or twice a year. I would have that nasty acid taste in my mouth when I burped, and a hot/burning sensation in the area of my breastbone. While not particularly comfortable, it wasn't an excruciating, debilitating pain, and taking some Tums or other antacid would neutralize it and both the taste and the discomfort would go away. When I had my first NCCP, I had been having problems swallowing for a few years but hadn't yet been diagnosed with anything, and I had no clue that the pain was related to my swallowing problems. I thought the pain was some gawd-awful gas pains -- felt like something was stabbing me from the inside out! The pain seemed to start in the ribs and almost squeeze my chest with searing pain that seemed to shoot up into my neck, too. (note: everyone can experience NCCPs in varying degrees and in various parts of the body, including stomach, chest, shoulders, neck, back, jaw, tongue, teeth, and roof of the mouth.) I lived alone at the time, and I drove to a convenience store and bought three rolls of Rolaids and ate two whole rolls. That didn't have any effect at all, and it took a couple hours for the pain to go away. Another time, I have a distinct memory of standing in the kitchen holding onto the countertop and just WAILING at the top of my lungs because it hurt so bad, and my knees buckling from the pain. My wailing turned into one big repetitious prayer: "Please, Lord, Please, Lord, Make It Stop, Lord, I Can't Take It Anymore, Lord, Please, Lord, I Need You To Please Help Me!" over and over and over again while sobbing. This was almost a decade ago and I don't know how long it went on, but I'm thinking that it was well over an hour of that constant wailing. Boy, those were the days, huh? ;o) For people whose doctors believe that NCCPs are an "atypical" (not normal) symptom for achalasia patients, point them in the direction of this informal poll here on our group: achalasia/surveys?id=1037310 The poll is now closed, so who knows how many more would be added to it if it were still accepting votes. If you scroll down to the end, 38 people reported that they have these "spasms", and 5 people reported that they don't have spasms. So out of 43 people who answered the poll, 88% have spasms and 12% don't have spasms. Doesn't sound like a "rare" or "atypical" symptom, does it? In another poll ( achalasia/surveys?id=1011383 ) of people who went to the Emergency Room due to extreme chest pains, 2 were given intravenous Valium, 3 were given Demorol or other narcotic injection, and 7 were given no treatment whatsoever.... isn't that sad? 58% of the people who were in such severe pain that they went to the E.R. were given NO TREATMENT at all!!! That is SO unnecessary!!!! Here's some info that I copied from an old post of mine -- if your doctor will bother to do some simple web searches, he'll see that calcium channel blockers, nitroglycerine, and anti-depressants are all documented ways to treat NCCP in people with esophageal disorders! Maybe if you print it out and show it to him, he'll be willing to offer you some help in dealing with this. ============================================= Here's some basic info that I've posted in the past -- different things work for different people, so it's basically just an experiment to find what works for your own particular situation. Here are some different coping methods to try: -- Swallowing something warm or something cold (in my case, I chug warm --not hot-- water as fast as I can). -- CCB medication (calcium channel blockers) -- when I'm having NCCPs, I prick the shell of a nifedipine capsule and squirt it under my tongue. It absorbs into the bloodstream under the tongue (this is called a "sub-lingual" medication, meaning under-tongue) and relaxes smooth muscle tissue (which is what the esophagus is made up of). You can also just swallow the capsule, but since we have trouble swallowing in the first place, I've found the under-the-tongue method works best (then you just swallow when you've held it there as long as you can and your saliva requires a swallow). Unfortunately, it can also lower your blood pressure (usually only a problem if you already have low BP to begin with) and cause a headache afterwards -- some people experience this, some don't. CCB's can also be tried in the "slow release" formula as a preventative to having NCCPs start in the first place. -- Nitroglycerin medication -- works in much the same way as the CCB mentioned above, and can also be taken sublingually for fast relief. -- Certain anti-depressant and anti-convulsant medications -- some people don't have NCCPs when on these types of medications, believed to be a function of the medicine's effect on serotonin in the brain (antidepressants such as Nortryptaline, Amitryptaline, Imipramine and Trazodone have been studied; Neurontin is being studied in a similar way for "phantom limb pain" in amputees, etc.) People in the group have had luck with Paxil, Ativan, Nortryptaline, etc. The dosage needed in this case is generally lower than the dosage that is normally used to treat depression. -- L'Argnine supplements -- some people have found these relieve NCCP symptoms. -- If symptoms are debilitating and none of the methods above help, you may need a narcotic pain reliever, but definitely try all the options above first, b/c if you're on narcotics you can't drive, work, etc., and the vast majority of people can find relief in a way that doesn't involve narcotics. ============================================= In the last few years I've taken three different drugs that affect serotonin (one of which isn't considered to be an anti-depressant medication, but which does have a serotonin effect nonetheless); any time I was on one of those drugs, my NCCPs have either disappeared entirely, or been nearly eliminated. And each time I discontinued a serotonin-effect drug, the NCCPs started up again within a month's time. One member here who was in the E.R. repeatedly for debilitating NCCPs finally had a doctor prescribe a low-dose daily antidepressant; her NCCPs have been eliminated.... no more pain, no more narcotics, no more trips to the hospital. There are soooooooooooo many things that can be done to reduce NCCPs, but doctors don't even bother to TRY to find a solution for us. I say let THEM curl up in a fetal position making plea-bargain deals with their Maker at 3:00 in the morning just ONCE, and you can bet your booty that they'll find a solution REAL fast!!! :oP AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Looking for earth-friendly autos? Browse Top Cars by "Green Rating" at Autos' Green Center. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Hi, You are so right to be more cautious now, finding out who you need to have to perform your surgery. At the time I had my first surgery, I couldn't look things up the way one can now, simply for the fact that internet wasn't there. I am so glad to be able to find out which doctors one should go to and which hopes are realistic. If I had known 11 years ago, what I know now, my surgery would have never been performed by that particular hospital. My second surgery was performed by THE Dutch surgeon in achalasia area. Unfortunately I had many complications, which were absolutely not the surgeon's fault (it was my stubborn body's fault). Should I go for a third one, I will have it performed in Germany by Dr. Schulz. Not because I am unsatisfied with my Dutch treatment (my surgeon was really great, I am glad to have had him operating on me), but just because Dr. Schulz is sooooo experienced. I am sure he has performed most myotomies of all surgeons in Europe. Experience is so very very important. Please look for the most experienced and renowned doctor you can find!!! I certainly hope things work out for the best for you, please keep us posted! Isabellatig26904 <tig26904@...> wrote: -Thank you for the words of encouragement!I am going to see my surgeon on the 3rd of April. I'm not sure that he is the best...but...his name is Dr. at Strong Memorial Hospital in Rochester NY. I have not read all of the posts, so I don't know if he has been mentioned or not. When I had my first surgery I didn't have alot of time to check out anyone. This second time around I would like to be a little more cautious though. So any information anysone can provide would be helpful.And in my first post I meant not that there isn't alot of good information offered here, just that we are all still dealing with the pain at some level and I'm beginning to think that it is wishful thinking to think it will ever go away completely. -- In achalasia , Isabella Arnold <arnoldisabella@...> wrote:>> Hello there!> > How much I understand your feelings and your struggle!!! I have just had my second open Heller, after having my first one done 11 years ago. It took me 5 years to decide to go through another surgery.> > It is hard enough having to cope with achalasia, so I can imagine what it is to have to struggle with problems at work too. What a terrible boss you have!!! I got my job 11 years ago, right after my first surgery. Luckily I have the best job, boss and collegues one can wish for. My myotomy is now 10 weeks ago, I am still at home and my boss does not want to see me around now for anything else but a cup of coffee. He wants me to get better first and to get some answers as to why my swallowing problems are already coming back. He also wants me to get some rest in my head first, as I am scared to death to having to undergo another surgery (so that part of your feelings I also truly understand). I am so gratefull for my job.> > Please hang in there and don't give up. Have your myotomy done by the best doctor you can find and don't bother about what others think of you. You know best what you are feeling and you are not alone. Like me, there are plenty of others here on the forum, who know what a terrible time this must be for you. But...after this rotten time, things will change for the better for you (and me). I am absolutely sure of that, so please don't give up hope!!!> > Isabella> > tig26904 <tig26904@...> wrote:> Seven years later I'm now facing a second surgery.......I haven't > been in this group for most of those seven years.....and I'm not > reading alot of different information then I did then....I have to > tell you I'm now scared to death of this second surgery, I wonder > really what good it will do. After the first I still, like many of > you, still have had problems and WHY???? Lack of information (which I > know probably has been said time and time again) regarding > our "condition".> > There have been times when I have had my, what I call for a lack of a > better word, bouts...dry heaving, nausia, sweats for > hours........where I've thought to myself, if someone came in here > now to rob me and threatened to shoot me I'd tell them "Please do > it". And believe me, I know there are people worse off than > me......but once the bouts come on...and the longer they seem to > last.......the more I feel that I want to give up this fight......and > no one except people that have it, understands. I can't count the > number of times I have had it at work....and everyone acts like it is > nothing...my boss said the other day, "well, sometimes you just have > to buck up and come to work sick". I would never want to wish this on > anyone...but....give him 15 minutes of the pain, and I wonder how he > would "buck-up"?> > Sorry, but I have to vent as I'm sure everyone here does....> > > > > > > ---------------------------------> Sucker-punch spam with award-winning protection.> Try the free Beta.> Need Mail bonding?Go to the Q&A for great tips from Answers users. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Hi , If I were to suggest one thing to a future sped teacher, it would be that you should become intimately familiar with the state and federal standards and processes. It has been extremely frustrating for us to have to teach our teachers- even the really great ones who go above and beyond and seem to really care- what various processes are. For example, we had to inform our teachers of what the process was for their recommending our child get assessed for ASD (the district told us that the absolutely never have and are not able to ever refer a child for testing on the district's dime- we threw a (respectful and professional) fit and managed to achieve compliance), and now we are being told that a coordinator in the district office is the one who decides whether we qualify for an extended school year while the process is clearly stated in an IEP manual (put out by the state and available online) which says it is the IEP team who decides this. Not someone who has never met our child and new to the job (this person hasn't even been hired yet and this needs to be decided by the end of April). As you can see, these sorts of things can really frustrate a parent. You can be great- communicative, patient, and thorough- but if you don't know all the standards and processes inside and out, the higher district heads can put one over on you (as is what's happening in our case) which can adversely affect the children you work with, and you'll have no idea. If you want to be really effective, know this stuff inside and out. There are my two cents. Hope that helps! On 3/19/07, Feutz <afeutz1@...> wrote: I'm a special education major moderate to intensive and i was wondering what parents and caregivers would like from their students teachers. Also i was wondering what past teachers have done well and what they have done incorrectly. Thanks We won't tell. Get more on shows you hate to love(and love to hate): TV's Guilty Pleasures list. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 Tig, Dr. works at Strong alongside Dr. s, who is very well known. Dr. s used to be a big name out in CA for a long time, and moved east to NY just a few years ago (4 or so?). I had my initial surgical consult with Dr. s, and while I did not get to meet Dr. , if they work together you are probably in good hands. in NY From: achalasia [mailto:achalasia ] On Behalf Of tig26904 Sent: Monday, March 19, 2007 10:03 PM achalasia Subject: Re: (unknown) - Thank you for the words of encouragement! I am going to see my surgeon on the 3rd of April. I'm not sure that he is the best...but...his name is Dr. at Strong Memorial Hospital in Rochester NY. I have not read all of the posts, so I don't know if he has been mentioned or not. When I had my first surgery I didn't have alot of time to check out anyone. This second time around I would like to be a little more cautious though. So any information anysone can provide would be helpful. And in my first post I meant not that there isn't alot of good information offered here, just that we are all still dealing with the pain at some level and I'm beginning to think that it is wishful thinking to think it will ever go away completely. -- In achalasia , Isabella Arnold <arnoldisabella@...> wrote: > > Hello there! > > How much I understand your feelings and your struggle!!! I have just had my second open Heller, after having my first one done 11 years ago. It took me 5 years to decide to go through another surgery. > > It is hard enough having to cope with achalasia, so I can imagine what it is to have to struggle with problems at work too. What a terrible boss you have!!! I got my job 11 years ago, right after my first surgery. Luckily I have the best job, boss and collegues one can wish for. My myotomy is now 10 weeks ago, I am still at home and my boss does not want to see me around now for anything else but a cup of coffee. He wants me to get better first and to get some answers as to why my swallowing problems are already coming back. He also wants me to get some rest in my head first, as I am scared to death to having to undergo another surgery (so that part of your feelings I also truly understand). I am so gratefull for my job. > > Please hang in there and don't give up. Have your myotomy done by the best doctor you can find and don't bother about what others think of you. You know best what you are feeling and you are not alone. Like me, there are plenty of others here on the forum, who know what a terrible time this must be for you. But...after this rotten time, things will change for the better for you (and me). I am absolutely sure of that, so please don't give up hope!!! > > Isabella > > tig26904 <tig26904@...> wrote: > Seven years later I'm now facing a second surgery.......I haven't > been in this group for most of those seven years.....and I'm not > reading alot of different information then I did then....I have to > tell you I'm now scared to death of this second surgery, I wonder > really what good it will do. After the first I still, like many of > you, still have had problems and WHY???? Lack of information (which I > know probably has been said time and time again) regarding > our " condition " . > > There have been times when I have had my, what I call for a lack of a > better word, bouts...dry heaving, nausia, sweats for > hours........where I've thought to myself, if someone came in here > now to rob me and threatened to shoot me I'd tell them " Please do > it " . And believe me, I know there are people worse off than > me......but once the bouts come on...and the longer they seem to > last.......the more I feel that I want to give up this fight......and > no one except people that have it, understands. I can't count the > number of times I have had it at work....and everyone acts like it is > nothing...my boss said the other day, " well, sometimes you just have > to buck up and come to work sick " . I would never want to wish this on > anyone...but....give him 15 minutes of the pain, and I wonder how he > would " buck-up " ? > > Sorry, but I have to vent as I'm sure everyone here does.... > > > > > > > --------------------------------- > Sucker-punch spam with award-winning protection. > Try the free Beta. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 The one thing our son's teacher does to help him is to have a general schedule on the board each day. This is not an exact schedule, meaning it doesn't say Math:10:15, spelling 10:45 etc. It just says morning - math, spelling, gym, then there's a spot for lunch and the afternoon is the same. That way if one subject goes longer than expected he doesn't get bothered about it. Also, if this schedule changes, she tells first, before telling the class - like if they decide to watch a movie as a treat instead of doing math. It's a great surprise to the rest of the class but needs a bit of warning, even when the change is a special treat that he will enjoy. Another good thing our teacher does is she talks to like one person to another, instead of teacher to child. doesn't think like a child and doesn't like to be talked to like one. really likes helping in an "adult" way (or at least he thinks it's an adult way) Every day after school he cleans whiteboards. He started in his own classroom but soon word spread and he now does boards for 4 teachers. (did I mention we have a wonderful school with exceptional teachers?) Giving him these responsibilities has been terrific for him. It makes him feel useful. He thinks playing games like tag is a big waste of time. By the way, these are responsibilities he's chosen, not that have been forced on him. I guess the biggest thing for teachers that we could hope for is that they take the time to get to know our kids. Yes, they're different, yes, they'll probably cause problems now and then and yes, they are harder to teach than the average NT child. But they are awesome - if you can only take some extra time to find out how awesome they are! Thanks, for being concerned and wanting to do the best things for these great kids! Estevan, Saskatchewan Canada -- (unknown) Hi ,It's wonderful that you, as a teacher, are interested in what the parents of special kids want and need from you. What a refreshing attitude!I homeschool my preschool ASD son, but I have spent several days observing special ed classrooms. One thing that some teachers do well is they use high energy, friendly affect. (It's sometimes hard to keep that up when our kids can be so flat in response. Still, the high affect is worth it. My son really responds well to high energetic affect.)The thing that many teachers and aides do that is not so great is they talk amongst themselves quite a lot when they really should be trying to engage their students. Also, they talk about students in front of them as if they weren't even there.The number one thing I think any teacher of students with ASD should do, is to become well trained in ABA. (But I realize some parents out there aren't big ABA fans... I'm just saying for me, and for my son, that's what works and what I would be looking for in a teacher.)Hope that helps!>> I'm a special education major moderate to intensive and i was wondering what parents and caregivers would like from their students teachers. Also i was wondering what past teachers have done well and what they have done incorrectly.> Thanks> > > ---------------------------------> We won't tell. Get more on shows you hate to love> (and love to hate): TV's Guilty Pleasures list.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 , You must have had such a traumatic time over the past six years. You are obviously a very strong woman to have come so far. I can only say that I am overwhelmed with compassion and admiration for your courage and strength to have carried your little boy through such difficult circumstances. My boy is five years old and has just started school. He has had a very difficult beginning with the structure and demands of school life. He is now on Ritalin and is actually able to manage a full school day now...most days. It was not easy for me putting him on Ritalin. However, seeing the benefits to him and his siblings and teachers has shown me the benefits of medication. Also, was diagnosed with ADHD, ODD, OCD and anxiety. His school and I all believe he has AS but that is not diagnosed here in Australia until a child is 8 or has been in school for two years. I can see why they do that now. Since has been at school his behaviour has become much more obviously typical of AS. I think I am becoming more aware of what has actually always been there. Because is now in school the differences between his behaviour and that of his peers is becoming much more stark. With the above labels, however, at least I can say, " yes, that is why he is behaving that way " . Without labels I found I was blaming myself for his behaviours and I think others would find it easy to blame my parenting without an actual label. Now, however, I can say that does this because....... . Though you may feel that having your son labeled may mar his status in the world, actually, it makes his status much more clear. You know him and you now know what makes him tick. That is important. Before any person can help anyone else in this world they must get to know themself. Then they can equip themself to be able to help others. If you have " labels " for your son you are actually helping yourself and him to equip him for life. He will be able to say, " I do this because..... " just like you will be able to to both yourself and others. Though you may feel that labeling him is a long term sentence, you are actually freeing both of you to be who you were made to be in a very effective manner. I think it is always good to know what to expect in upcoming situations. Once you have a diagnosis you will be able to be ready. I think you are heading in the right direction and I commend you for all that you have been through already and for your courage to face the future, though it may seem difficult at times. It is good to hear that your school is on top of things. I hope that their attitude is one of " building up " your son. I hope their reasoning in wanting to obtain a diagnosis is to equip themselves also for the task. If this is so, then, you have an excellent school and commendations to them also. Spend time grieving. It is necessary. In time you will regain strength and rise up to do everything you have to. Draw strength from those around you at this time and hang in there. Knowing your son will take time. It's taken so many " revelation moments " in little life for me to begin to understand him. It definately is not easy. Give yourself a break whenever you can and reward yourself for your efforts. You deserve it!!! Marlicia. ( ) (unknown) Hello group, my name is and I have a wounderful 6 year old little boy named Seth. He was born with a severe heart condition and lung problems that kept him hospitalized for most of his early years. He has under gone two open heart surgeries, a tracheotomy placement and removal, seizure disorder and so on... All of these physical problems I can deal with because they are fixable. Yet, approx a year and half ago he was diagnosed with ADHD snd has been on Concerta ever since, and it works sometimes. We have finailly put him in a school that is on top of his behavior and physical issues, so much so that they are now asking to test for Asperger's and/or Autism. I of course agreed and thaey sent me a test to take and he definitly has a lot of characteristics of Asperger's (not so much Autism). So at our next Dr appt I will have him start the appropriate testing. I have mixed feeling about this new revalation, on one hand I am glad to hve a name for his behaviors and feelings (or lack there of), and on the other hand I am overwhelmed. I don't how to be Seth's mother, I don't know how to relate to him, and enjoy him. I want to run away, far away. HELP!!!! ------------ --------- --------- --- Food fight? Enjoy some healthy debate in the Answers Food & Drink Q & A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Dear , I'm so sorry you and Seth have had to go through so much. What a struggle it must be for you. The mixed feelings you are having right now are completely normal. My son was diagnosed about two years ago when he was seven and in all honesty I'm still dealing with that. I accepted it right away, but I'm still going through the phases and it is so very overwhelming. I know it doesn't feel like you know right now, but you do know how to be Seth's mother, you've already been doing it for six years. This new diagnosis doesn t change the way you are a mother to him. You're clearly already a supportive, caring, loving, patient mother and that same support, care, love and patience you've already been giving him is what he needs now too, so you re already well on your way. It's so scary to learn your child has a spectrum disorder and then to add to it the other problems your son has must make it even more scary. There's nothing new to learn about how to be his mother or how to relate to him and enjoy him. He's not a new or different child, just a child with a new diagnosis. You've already been all of these things and are obviously doing a wonderful job. The only difference in all of those that the new diagnosis may bring is actually teaching you new ways to get closer to him which will actually make things better. I remember when Trey was first diagnosed and after the inital shock wore off I was so relieved. He was seven when he was diagnosed and all the years prior, I couldn't understand why he would so rarely let me hug him and cuddle him like I did with my other two children. I was so afraid that he'd feel unloved (or that he already did) and also afraid that maybe he never bonded with me and therefore just didn't love me as deeply. Every single hug or cuddle that he refused me completely broke my heart and there were many nights I'd go to bed in tears wondering what in the world I had done wrong to make him that way. However, after I learned he had AS and that all of this was just part of the AS..ohhh I cried tears of joy! lol I knew then that it wasn't him feeling unloved and I knew that it wasn't that he didn't love me so much, it was just a sensory issue! It felt so odd to rejoice in the fact that my son has sensory issues, but rejoice I did! lol And that has made every single brief hug an absolute blessing and my heart swells with joy each time. Now he'll even stop whatever he's playing upstairs in his room to just come down and say, " Momma? I love you " and give me a big, albeit brief, hug and he'll do that several times a day now and each time I ll drop everything to snatch up that very brief hug and it's the best part of my day. Trey's diagnosis actually made it easier for me to be able to relate to him and enjoy him because then I understood all the " why's " that didn't make sense to me before and understanding the " why's " make such a huge difference You're clearly a very good mother and little Seth is so blessed to have you in his life. So soak up every little hug every chance you get, take some time for you for breaks as often as you can (even if it's just a 15 minute bubble bath), talk to others, read and learn what you can, ask questions, ask for help and remember, we're always here for you and you're not alone. ~*BIG HUGS*~ -Jenn, AEP (ADD, Bi-Polar, Anxiety/Depression) Proud Momma of Cory Albert (14yrs ADHD), h Dawn (12yrs Anxiety/Depression) and Jerry Lee " Trey " (9yrs ADHD, Bi-Polar, Asperger's) -- ( ) (unknown) Hello group, my name is and I have a wounderful 6 year old little boy named Seth. He was born with a severe heart condition and lung problems that kept him hospitalized for most of his early years. He has under gone two open heart surgeries, a tracheotomy placement and removal, seizure disorder and so on... All of these physical problems I can deal with because they are fixable. Yet, approx a year and half ago he was diagnosed with ADHD snd has been on Concerta ever since, and it works sometimes. We have finailly put him in a school that is on top of his behavior and physical issues, so much so that they are now asking to test for Asperger's and/or Autism. I of course agreed and thaey sent me a test to take and he definitly has a lot of characteristics of Asperger's (not so much Autism). So at our next Dr appt I will have him start the appropriate testing. I have mixed feeling about this new revalation, on one hand I am glad to hve a name for his behaviors and feelings (or lack there of), and on the other hand I am overwhelmed. I don't how to be Seth's mother, I don't know how to relate to him, and enjoy him. I want to run away, far away. HELP!!!! --------------------------------- Food fight? Enjoy some healthy debate in the Answers Food & Drink Q & A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Ann You did exactly what your mom would have wanted,, and you will always remember that time and know that she did not die alone,, what a wonderful gift from you!ann <agann_01@...> wrote: THe stories you have shared about witnessing deathreally hit home with me, also. I was with my Mom atthe hospital (rehab ctr) - I had just dozed off when"something" woke me- told me to go to her. I held herhand as she took the last breath and it was the mostpeaceful thing Ive ever known- the cancer pain wasgone and she was where she needed to be. omg.__________________________________________________________Sucker-punch spam with award-winning protection. Try the free Beta.http://advision.webevents./mailbeta/features_spam.htmlJackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 " How to be Seth's Mother " written by, , Seth's mother (a work in progress!) He is the same Seth he was before you knew about " AS " , now you just are getting a name for all the behaviors. Hang in there. And stick around. You will learn all sorts of things just by reading and hanging out with people who are dealing with the same issues. Roxanna ( ) (unknown) Hello group, my name is and I have a wounderful 6 year old little boy named Seth. He was born with a severe heart condition and lung problems that kept him hospitalized for most of his early years. He has under gone two open heart surgeries, a tracheotomy placement and removal, seizure disorder and so on... All of these physical problems I can deal with because they are fixable. Yet, approx a year and half ago he was diagnosed with ADHD snd has been on Concerta ever since, and it works sometimes. We have finailly put him in a school that is on top of his behavior and physical issues, so much so that they are now asking to test for Asperger's and/or Autism. I of course agreed and thaey sent me a test to take and he definitly has a lot of characteristics of Asperger's (not so much Autism). So at our next Dr appt I will have him start the appropriate testing. I have mixed feeling about this new revalation, on one hand I am glad to hve a name for his behaviors and feelings (or lack there of), and on the other hand I am overwhelmed. I don't how to be Seth's mother, I don't know how to relate to him, and enjoy him. I want to run away, far away. HELP!!!! --------------------------------- Food fight? Enjoy some healthy debate in the Answers Food & Drink Q & A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 > > " How to be Seth's Mother " > written by, , Seth's mother (a work in progress!) > > He is the same Seth he was before you knew about " AS " , now you just are getting a name for all the behaviors. Hang in there. And stick around. You will learn all sorts of things just by reading and hanging out with people who are dealing with the same issues. > > Roxanna > ( ) (unknown) > > > Hello group, my name is and I have a wounderful 6 year old little boy named Seth. He was born with a severe heart condition and lung problems that kept him hospitalized for most of his early years. He has under gone two open heart surgeries, a tracheotomy placement and removal, seizure disorder and so on... All of these physical problems I can deal with because they are fixable. Yet, approx a year and half ago he was diagnosed with ADHD snd has been on Concerta ever since, and it works sometimes. We have finailly put him in a school that is on top of his behavior and physical issues, so much so that they are now asking to test for Asperger's and/or Autism. I of course agreed and thaey sent me a test to take and he definitly has a lot of characteristics of Asperger's (not so much Autism). So at our next Dr appt I will have him start the appropriate testing. > > I have mixed feeling about this new revalation, on one hand I am glad to hve a name for his behaviors and feelings (or lack there of), and on the other hand I am overwhelmed. I don't how to be Seth's mother, I don't know how to relate to him, and enjoy him. I want to run away, far away. HELP!!!! > > --------------------------------- > Food fight? Enjoy some healthy debate > in the Answers Food & Drink Q & A. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 > > " How to be Seth's Mother " > written by, , Seth's mother (a work in progress!) > > He is the same Seth he was before you knew about " AS " , now you just are getting a name for all the behaviors. Hang in there. And stick around. You will learn all sorts of things just by reading and hanging out with people who are dealing with the same issues. > > Roxanna > ( ) (unknown) > > > Hello group, my name is and I have a wounderful 6 year old little boy named Seth. He was born with a severe heart condition and lung problems that kept him hospitalized for most of his early years. He has under gone two open heart surgeries, a tracheotomy placement and removal, seizure disorder and so on... All of these physical problems I can deal with because they are fixable. Yet, approx a year and half ago he was diagnosed with ADHD snd has been on Concerta ever since, and it works sometimes. We have finailly put him in a school that is on top of his behavior and physical issues, so much so that they are now asking to test for Asperger's and/or Autism. I of course agreed and thaey sent me a test to take and he definitly has a lot of characteristics of Asperger's (not so much Autism). So at our next Dr appt I will have him start the appropriate testing. > > I have mixed feeling about this new revalation, on one hand I am glad to hve a name for his behaviors and feelings (or lack there of), and on the other hand I am overwhelmed. I don't how to be Seth's mother, I don't know how to relate to him, and enjoy him. I want to run away, far away. HELP!!!! > > --------------------------------- > Food fight? Enjoy some healthy debate > in the Answers Food & Drink Q & A. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 Welcome ! In answer to your question YES! Don't let the guilt get you. I have often fantasized about running away during one of our meltdowns. And whenever I can I go away for a weekend to have some time where I am not constantly thinking/worrying about the future. I used to get a huge knot in my stomach everyday when it was time to get the boys up for school or go pick them up from school. Just vent on here , ask questions and go easy on yourself. being a parent is the hardest job in the world, being a parent to our kids is even harder... WELCOME and ask away and vent all you need. Toni ( ) (unknown) > > > Hello group, my name is and I have a wounderful 6 year old little boy named Seth. He was born with a severe heart condition and lung problems that kept him hospitalized for most of his early years. He has under gone two open heart surgeries, a tracheotomy placement and removal, seizure disorder and so on... All of these physical problems I can deal with because they are fixable. Yet, approx a year and half ago he was diagnosed with ADHD snd has been on Concerta ever since, and it works sometimes. We have finailly put him in a school that is on top of his behavior and physical issues, so much so that they are now asking to test for Asperger's and/or Autism. I of course agreed and thaey sent me a test to take and he definitly has a lot of characteristics of Asperger's (not so much Autism). So at our next Dr appt I will have him start the appropriate testing. > > I have mixed feeling about this new revalation, on one hand I am glad to hve a name for his behaviors and feelings (or lack there of), and on the other hand I am overwhelmed. I don't how to be Seth's mother, I don't know how to relate to him, and enjoy him. I want to run away, far away. HELP!!!! > > --------------------------------- > Food fight? Enjoy some healthy debate > in the Answers Food & Drink Q & A. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 All of you are not alone...I Love my son Stan (as we all do) but it is hard not to have a meltdown like they do. Sometimes my dh and I find we are yelling and getting exasperated, then realize later that our ds cannot help some of the things he does. He needs to vent and unfortunately we as parents need to vent also. It's better if we could vent when their not around, but hey it does happen. It doesn't make us bad parents, just real human beings. Toni Barker <kbtoni@...> wrote: Welcome ! In answer to your question YES! Don't let the guilt get you. I have often fantasized about running away during one of our meltdowns. And whenever I can I go away for a weekend to have some time where I am not constantly thinking/worrying about the future. I used to get a huge knot in my stomach everyday when it was time to get the boys up for school or go pick them up from school. Just vent on here , ask questions and go easy on yourself. being a parent is the hardest job in the world, being a parent to our kids is even harder... WELCOME and ask away and vent all you need. Toni ( ) (unknown) > > > Hello group, my name is and I have a wounderful 6 year old little boy named Seth. He was born with a severe heart condition and lung problems that kept him hospitalized for most of his early years. He has under gone two open heart surgeries, a tracheotomy placement and removal, seizure disorder and so on... All of these physical problems I can deal with because they are fixable. Yet, approx a year and half ago he was diagnosed with ADHD snd has been on Concerta ever since, and it works sometimes. We have finailly put him in a school that is on top of his behavior and physical issues, so much so that they are now asking to test for Asperger's and/or Autism. I of course agreed and thaey sent me a test to take and he definitly has a lot of characteristics of Asperger's (not so much Autism). So at our next Dr appt I will have him start the appropriate testing. > > I have mixed feeling about this new revalation, on one hand I am glad to hve a name for his behaviors and feelings (or lack there of), and on the other hand I am overwhelmed. I don't how to be Seth's mother, I don't know how to relate to him, and enjoy him. I want to run away, far away. HELP!!!! > > --------------------------------- > Food fight? Enjoy some healthy debate > in the Answers Food & Drink Q & A. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2007 Report Share Posted March 27, 2007 , I just wanted to let you know how much my family appreciates all that your family is doing to move AS forward, bring the truth out and get all of our children help. Your father was caught in quite a tough spot being CEO of NBC. I can understand that your parents are waiting for written, unquestionable proof of the fact that the vaccines cause atutism before announcing it on TV. Research and proof is needed before they can take on the all powerful pharmaceutical companies. Just wanted to let you know we really appreciate all of your families efforts! I hope Christian continues to improve! Keep videotaping him....more proof! --- katie <andreas2@...> wrote: > my mother is an amazing advocate doing her best to > move AS forward, > name calling is highly unproductive > > ________________________________________________________________________________\ ____ Food fight? Enjoy some healthy debate in the Answers Food & Drink Q & A. http://answers./dir/?link=list & sid=396545367 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Your child is developing normally. Your doctor injects the child with one or more vaccines. Contemporaneous with that/those injections or soon thereafter the child tanks and develops symptoms associated with what we have mislabeled autism. Noone else has even seen a child developing normally who develops "autism" without the vaccine challenge. I know, I know maybe someone fell into a mercury sump somewhere and developed autism without a vaccine challenge. Though relatively rare indeed. What else do you need? Re: (unknown) ,I just wanted to let you know how much my familyappreciates all that your family is doing to move ASforward, bring the truth out and get all of ourchildren help. Your father was caught in quite a toughspot being CEO of NBC. I can understand that yourparents are waiting for written, unquestionable proofof the fact that the vaccines cause atutism beforeannouncing it on TV. Research and proof is neededbefore they can take on the all powerfulpharmaceutical companies. Just wanted to let you knowwe really appreciate all of your families efforts! Ihope Christian continues to improve! Keep videotapinghim....more proof!--- katie <andreas2nyc (DOT) rr.com> wrote:> my mother is an amazing advocate doing her best to> move AS forward, > name calling is highly unproductive> > __________________________________________________________Food fight? Enjoy some healthy debate in the Answers Food & Drink Q & A.http://answers./dir/?link=list & sid=396545367 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2007 Report Share Posted April 2, 2007 You need a CBC for sure..Your Dr will order the BW for ya..I found out y pure mistake that I had Hep C..If you are going to a Dr then thell him to order the right test..Have you had a biopsy yet?? Jan [ ] (unknown) the reply for lab i need to keep track of got deleted in error please reply again Need Mail bonding?Go to the Q&A for great tips from Answers users. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2007 Report Share Posted April 6, 2007 I just made the call and they are still taking calls. Scroll below for link. [ ] (unknown) Hi folks, The message below is from Tincup in land. There is a very dangerous bill in their legislature that could effect us all. The bill requires that the Department of Health mail all doctors in the state a copy of the " latest guidelines " for treating Lyme disease. That means a requirement that all docs in the state follow IDSA GUIDELINES, the latest guidelines. That means that in land chronic Lyme disease will not be recognized. PLEASE MAKE THE CALLS BELOW THAT TINCUP IS ASKING OF US. CALLS FROM LYME PATIENTS THROUGHOUT THE COUNTRY ARE NECESSARY. It really doesn't take very long to do this. I went through my calls while watching American Idol. Just leave your message on their answering machines - " Vote NO on House Bill 836. " Leave your name and phone number. I think the next 24 or so hours are critical, so please keep calling until I put out a post letting you know what the outcoome is. Thanks, Ellen FROM TINCUP: " If you have already called.. we STILL need another call from you.. so hold on!!! " Word is that this is the critical time. We need everyone, everywhere, to call all the Senators in the EHE committee today and tomorrow (Wed & Thurs) to tell them to: " VOTE NO to HB 836- the Lyme Disease Bill " Please call these Senators first, as they are in the EHE committee. 'http://www.msa.md.gov/msa/mdmanual/05sen/html/com/02eco.html Next call the others from the list below.. as many as you can please. Every call will help!!! http://www.msa.md.gov/msa/mdmanual/05sen/html/senal.html You can call and leave a message at night after hours.. so please do! THANK YOU!!!! More information and updates at the following site: http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=053149;p=1 TC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2007 Report Share Posted April 6, 2007 I realize this legislation is bad, but why are we boycotting this legislation when the federal legislation will be utilizing the same ISDA Guidelines. Why aren't we boycotting both and have the same concerns over both legislations. Connie [ ] (unknown) > Hi folks, > The message below is from Tincup in land. There is a very dangerous > bill in > their legislature that could effect us all. > > The bill requires that the Department of Health mail > all doctors in the state a copy of the " latest > guidelines " for treating Lyme disease. That means a > requirement that all docs in the state follow IDSA > GUIDELINES, the latest guidelines. > > That means that in land chronic Lyme disease will > not be recognized. > > PLEASE MAKE THE CALLS BELOW THAT TINCUP IS ASKING OF > US. CALLS FROM LYME PATIENTS THROUGHOUT THE COUNTRY > ARE NECESSARY. > > It really doesn't take very long to do this. I went > through my calls while watching American Idol. Just > leave your message on their answering machines - " Vote > NO on House Bill 836. " Leave your name and phone > number. > > I think the next 24 or so hours are critical, so > please keep calling until I put out a post letting you > know what the outcoome is. > Thanks, > Ellen > > FROM TINCUP: > " If you have already called.. we STILL need another > call from you.. so hold on!!! > > " Word is that this is the critical time. We need > everyone, everywhere, to call all the Senators in the > EHE committee today and tomorrow (Wed & Thurs) to tell > them to: > > " VOTE NO to HB 836- the Lyme Disease Bill > > " Please call these Senators first, as they are in the > EHE committee. > > 'http://www.msa.md.gov/msa/mdmanual/05sen/html/com/02eco.html > > Next call the others from the list below.. as many as > you can please. Every call will help!!! > > http://www.msa.md.gov/msa/mdmanual/05sen/html/senal.html > > You can call and leave a message at night after > hours.. so please do! > > THANK YOU!!!! > > More information and updates at the following site: > > http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=053149;p=1 > > > TC > > > > > The book, Confronting Lyme Disease: What Patient Stories Teach Us, is now > available through Amazon and Booksurge Bookstores. Please visit the > official website at http://www.confrontinglyme.com for more information. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 She signs thank you and tries to say it, is good to see a reply for your efforts. Ensign <daven0810@...> wrote: My son is six, and you could as well be describing him. We are finally making progress with his potty training. I think part of it was getting him into school where he is regularly with other kids who use the bathroom. He sees them use the potty and he's more likely to. (Peer pressure is a wonderful thing!) The thing that helps at home is just making him go sit on the toilet at regular intervals. He still wears pull-ups, though. At home, especially, he can get interested in something and lose track of his biological needs. We have many potty training books which he finds entertaining, but not particularly instructive.He's in the same situation with his language, but that, too, is improving because of school. He has for some time used words to get what he wants (e.g., "milk" "water" "cookie"). Getting him to append "please" was a major accomplishment. We're now working on getting him to say "thank you" after he gets what he wants. (I've often joked to my wife that I'm glad he didn't learn to say "Cadillac" first. We would have bought him one. LOL) Like you, we still aren't engaging in conversation, though. is also high functioning. He's doing really well in school. He's learning to read and is becoming a whiz at using the computer. His vocabulary seems to be increasing at a good rate right now. I guess my caution would be to not get too anxious just because things seem to be coming along slowly. I'm delighted at the progress we've seen lately, and there are signs that someday and I might discuss Spinoza or Zappa. Ahhh...imagining that irresistible "new car" smell? Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 ----- Original Message ----- From: Small > I am trying so hard to get back in shape. > It is really difficult. Any pointers? : There are three steps to getting into the shape you want: 1. Remove all scales and mirrors from your home. (Destroy the scales becasue they are WMD's-- Weigh My Derriere. Then give the mirrors to ugly people you don't like.) 2. Throw away all of your belts and clothes that have a waist-line. 3. Lie about your weight. From California where I followed my own advice and now in shipshape condition--that ship is the USS Enterprise. Bill Ahhh...imagining that irresistible "new car" smell?Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 I was thinking about getting back in shape (don't understand what happened to the shape), so I got a hullahoop to start loosening up. Don't do it - they are broken!!! They don't seem to want to stay up!! Gail Re: (unknown) ----- Original Message ----- From: Small > I am trying so hard to get back in shape. > It is really difficult. Any pointers? : There are three steps to getting into the shape you want: 1. Remove all scales and mirrors from your home. (Destroy the scales becasue they are WMD's-- Weigh My Derriere. Then give the mirrors to ugly people you don't like.) 2. Throw away all of your belts and clothes that have a waist-line. 3. Lie about your weight. From California where I followed my own advice and now in shipshape condition--that ship is the USS Enterprise. Bill Ahhh...imagining that irresistible "new car" smell?Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 > I'm curious what did your " cardiac rehab " consist of? Was it > supervices by you doctor or is it a plan you followed at home. It was supervised, monitored exercise inside a hospital. The supervisors were three cardiac nurses and a physical therapist. We were hooked up to 4-lead EKGs the whole time and they'd monitor our blood pressure before, during and after, and our blood sugars as well if any of us were diabetic. They taught me how to exercise and more importantly how to increase the amount of exercise I could do without wiping myself out (my usual pattern). This is the first time in my life where exercise actually makes me feel better, not worse. Ask your doctor; your doctor has to refer you. Best, Lynn S. ------ Mama, homeschooler, writer, activist, spinner & knitter http://www.siprelle.com NOTICE: The National Security Agency may have read this email without warning, warrant, or notice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Hi I hope that things will be OK with your shunt...it sounds like something similar that happened to me a couple of years ago - woke up to a huge bulge of fluid in my neck - the shunt had broken. If thats the case with you, I hope the repair/replacement goes OK, if this is what is to happen with you. Fingers crossed that everything is OK. I had to wait two weeks before mine could be repaired, as they didnt have a bed at the hospital for me....so, rest assured that, if its a break....waiting a day isnt a huge problem. I know, anything that can go wrong with your shunt, is indeed a concern, but Im just trying to reassure you, and give you my experience. Oh, and one thing Ive learnt, with my shunt - NEVER ignore a headache - especially a bad-ish one, or ones that are 'out of the ordinary' for you!!! My positive thoughts go out to you - if its any consolation, I know somewhat, what you may be feeling....but Im sure you will be OK! Let us know how you get on - take care Tania (unknown) Hi all, Just a note to let you all know that tomorrow morning I will be going to the ER/hospital in Boston. I have been having pretty bad headaches/nausea the past couple of days I thought nothing of it as we have been having really bad storms. But this morning when I woke up there was a big bulge of fluid in my belly from my shunt. I called the doc I need to go to the ER ASAP tomorrow as I could not get there today because of the flooding. Sorry if I've been a pain lately. HUGS, NICOLE Ahhh...imagining that irresistible "new car" smell?Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 U ok now? I see this was April 17,,, and no U are not a pain to me tho.. Evanna -- (unknown) Hi all, Just a note to let you all know that tomorrow morning I will be going to the ER/hospital in Boston. I have been having pretty bad headaches/nausea the past couple of days I thought nothing of it as we have been having really bad storms. But this morning when I woke up there was a big bulge of fluid in my belly from my shunt. I called the doc I need to go to the ER ASAP tomorrow as I could not get there today because of the flooding. Sorry if I've been a pain lately. HUGS, NICOLE Ahhh...imagining that irresistible "new car" smell?Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 I love it! That is too funny...kinda like the dryer shrunk my jeans again! Judi -- Re: (unknown) ----- Original Message ----- From: Small > I am trying so hard to get back in shape. > It is really difficult. Any pointers? : There are three steps to getting into the shape you want: 1. Remove all scales and mirrors from your home. (Destroy the scales becasue they are WMD's-- Weigh My Derriere. Then give the mirrors to ugly people you don't like.) 2. Throw away all of your belts and clothes that have a waist-line. 3. Lie about your weight. From California where I followed my own advice and now in shipshape condition--that ship is the USS Enterprise. Bill Ahhh...imagining that irresistible "new car" smell?Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
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