Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 > This was about the time when I became frustrated with the continual viral diagnosis. It can drive you insane - I know it firsthand. My daughter is 22 months old and we went to see a pediatric rheumatologist in April which is where the term was mentioned to us for the first time. So we are only two months into this amd we have learned so much from this group. Just a warning, nothing is going to go very fast. Everything takes time. Refferals take time, lab tests take time, an affirmative diagnosis takes a long time from where we sit anyway. They are still not sure what it is my daughter is dealing with, probable but not sure until they rule out other genetic disorder possibilities (others in the group can give you better info on these - I am still learning myself). At least you have the ball rolling. You found this group. Ask questions to the group and to your doctors. Tell others what you are going through, that way they won't treat you like you are exposing their children to the plague during the fever cycles. Plus you never know, they may know someone else who is dealing with the same thing in your area as well. Those people are also great resources. Just keep on going, know you are not alone in this. Keep an eye on the boards here and it won't take you log to figure it out. Also, journal allthe symptoms your daughter has - dates, reactions, major and minor symptoms - the specialists will ask when you get there. Good luck! Lori Rodgers mom to (10) Jenna (7) Abby (5) (22 months and probable ) > From: Tammielee Rebel <tlrebel@...> > Date: 2006/06/29 Thu PM 09:22:52 EDT > > Subject: (unknown) > > Hi, > I am trying to get as much research on Pfapas as possible. My 15mth old daughter has been getting sick every 2-3 weeks for the past 6 months and I have been fed up with my Dr. telling me it was just a virus. I finally made him listen and he agreed once he reviewed her chart that something is wrong. He doesn't have any answers for me so he is sending me to Childrens Hospital in PA, he suggested that she may have Pfapas but he isn't very familiar with it so I have been doing research and from what I have learned it fits my daughters symptoms exactly. I was both relieved and still upset if this does turn out to be what is wrong. I will be glad that she doesn't have something life threatning yet at the same time this can be so disabling to someone who has this especially if it continues for years. If anyone has any suggestions for me during this time I would appreciate it. I just want some answers!!!!!!!!!!!!!!! > > > Tammielee > > --------------------------------- > Sneak preview the all-new .com. It's not radically different. Just radically better. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2006 Report Share Posted July 5, 2006 asp aut wrote: > > > Hello,I have two kids my son is 6 with {adhd} and on the way of being > diagnosed with Aspergers. I have been seeing alot of changes in him. He > seem to get worse every. This was his First yr. In school and his > teacher didn't know how or what to do for him . She made out to me that > there was something was really wrong with him she wrote me a note home > and said that he talked about morbid things and that he done ritual type > motions. I cried for days. So needless to say he failed school , He is > going to be 7 in grade " k " Does your son have an IEP? Is he doing regular classes with a resource room/person, or all special ed or part special ed? There is no excuse for placing your son with a teacher who doesn't understand his difference. And to make him pay for it by " failing " him is unfair in the extreme. I'd ask, no, demand an IEP (Individual Educational Plan) for your son, as mandated by Federal law, and a different classroom placement with a teacher who knows at least a little about your son's difference. Or who is at least willing to learn. IF there's no teacher like that in your son's present school, the school system has to find one for him. Period. IT's the law. Your son is entitled to the same education that anyone else gets, tailored to his difference and in the least restrictive environment. Settle for nothing less. The law says your son gets this just like any other kid in school. But be ready for a fight from your school system. They seldom do this stuff without one. BTW, the " teacher " is wrong. There's nothing wrong with your son. He is an Asperger's autistic person, and there's nothing wrong with that. It's a difference in brain structure and function, not a disease, not a mental illness. Your son's teacher needs to be told this. > he is verbal but still very,very quite at times until > his sister starts getting on his nerve's thin his hands go over his ears > and he starts rocking thin he gets very mad . The rocking is called self-stim (for self-stimulation). It's a thing a lot of autistic people do to calm and center themselves during times of stress. When he starts to do this, it's a sign that he's being overloaded with sensory input. A good thing to do is to give him, if possible, a quiet place that's his where he can go and calm down if his sister gets on his last nerve...or starts to. > Some times people get mad > an aggravated at him because he want answer them . Yeah, you get a lot of this from the NT (neuro-typical) world. They just don't understand. He doesn't answer, probably, because to his logical mind what they've said doesn't require a reply, so why give one? Just tell people that he's an autistic person and tends to be close-mouthed around all but family. If they have a problem with this, it's their problem, not yours. > I ted to do thing for > him even though I know he can do it. I do it before I think. I did this for a long time too, when our guy was first diagnosed. It's a hard habit to break, because it comes right along with being a mom. But you can do it, I know. Because you want your son to learn to paddle his own canoe in the world, and that's a good place to start. BTW, I'm Annie, in Albuquerque NM. Our guy is Louie. He's 26, has been in assisted living for 5 years now with three roomies in a beautiful old hacienda, works 2 part-time jobs (asst. sexton and apt. yardman), has a volunteer gig filling bird feeders in a nature park, and a training opportunity learning to groom and care for a horse named Rocky. When he was diagnosed at 2.5, we were advised to put him into a home because he'd never be a contributing member of society (he was non-verbal from 2-almost 6). Shows what they know. Nice to meet you! Annie, who loves ya annie@... -- “He knows so little and knows it so fluently.” -- Ellen Glasgow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2006 Report Share Posted July 5, 2006 I understand what you are going through. My AS child is my middle child who is 13, I have heard similar things re her for years. The thing is, at least with her and the "morbid things" is that she sees things so black and white that it is not truly morbid to her but just another "thing, topic whatever". We had an issue a couple months back where she made one of those little hand games the kids play with paper to find out how many kids they will have or who they will fall in love with etc. (where it fits on fingers and thumbs and they count move it how many times you say and then open that flap and read it) ANYWAY, it was in what horrific accident you would die. She had no clue why her aunts and everyone were so upset, to her it was just like the other games. Sometimes, it is scary. I remember before she was diagnosed crying and being SO upset and calling her dad and stepmom asking what is wrong with her, is she psychotic or something? And she was only 7!! As she gets older, I can't necessarily get it across to her WHY certain things are not appropriate but I have pretty much gotten her to understand she can't discuss them if she doesn't see why! SO in some ways it does get better. As far as the violence against younger sibs, mine are 7 years apart and she knocked my 6 yr olds front top tooth into his gum on Thursday (right before her therapist was supposed to be here too!) and I had to take him to the dentist to have it pulled. We are working on it. Unfortunately, her emotional age is close to his actual age so they bicker at the same level CONSTANTLY! I am currently enjoying her being at dads for a week so have some peace. We are working on that one in therapy I will let you know if we find something to try that works! Good luck and God Bless, remember, there are good moments too but the frustration and stress goes with the territory, this board has been a blessing to me in just knowing others go through it too and do understand! DeeDee mom of Aslynne 15, NT Elissa 13 AS, ADHD, ODD and mood disorder nos Tynan 6 NT and soon step mom of 2, 4 and 8 yr olds who are also NTasp aut <asp_aut@...> wrote: Hello,I have two kids my son is 6 with {adhd} and on the way of being diagnosed with Aspergers. I have been seeing alot of changes in him. He seem to get worse every. This was his First yr. In school and his teacher didn't know how or what to do for him . She made out to me that there was something was really wrong with him she wrote me a note home and said that he talked about morbid things and that he done ritual type motions. I cried for days. So needless to say he failed school , He is going to be 7 in grade "k" his daily meds, are concerta 18mg,and 27mg. Tenex 1mg, 2 in morn, and 2 at night . He got to be so aggressive to his little sister she is 4 . He got to were he was hitting her so hard it was knocking the wind out of her .So the doc. put him on the Tenex . He does not sleep very good at first the Tenex was helping but not know. He is very little for his age he only weight about 34 lb. His skin color is very pale he is verbal but still very,very quite at times until his sister starts getting on his nerve's thin his hands go over his ears and he starts rocking thin he gets very mad . Some times people get mad an aggravated at him because he want answer them . I ted to do thing for him even though I know he can do it. I do it before I think. Thank you for listing . __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2006 Report Share Posted July 8, 2006 OMG DeeDee, I so live that in reverse! My son is 12 ½ (aspie) and my daughter (nt) is 5 ½, I constantly worry about her getting hurt because she is 41lbs and he’s 144lbs! They fight CONSTANTLY even being 7 years apart. Some days I want to run away!!! Charlotte From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of d corbin Sent: Wednesday, July 05, 2006 3:55 PM Autism and Aspergers Treatment Subject: Re: (unknown) I understand what you are going through. My AS child is my middle child who is 13, I have heard similar things re her for years. The thing is, at least with her and the " morbid things " is that she sees things so black and white that it is not truly morbid to her but just another " thing, topic whatever " . We had an issue a couple months back where she made one of those little hand games the kids play with paper to find out how many kids they will have or who they will fall in love with etc. (where it fits on fingers and thumbs and they count move it how many times you say and then open that flap and read it) ANYWAY, it was in what horrific accident you would die. She had no clue why her aunts and everyone were so upset, to her it was just like the other games. Sometimes, it is scary. I remember before she was diagnosed crying and being SO upset and calling her dad and stepmom asking what is wrong with her, is she psychotic or something? And she was only 7!! As she gets older, I can't necessarily get it across to her WHY certain things are not appropriate but I have pretty much gotten her to understand she can't discuss them if she doesn't see why! SO in some ways it does get better. As far as the violence against younger sibs, mine are 7 years apart and she knocked my 6 yr olds front top tooth into his gum on Thursday (right before her therapist was supposed to be here too!) and I had to take him to the dentist to have it pulled. We are working on it. Unfortunately, her emotional age is close to his actual age so they bicker at the same level CONSTANTLY! I am currently enjoying her being at dads for a week so have some peace. We are working on that one in therapy I will let you know if we find something to try that works! Good luck and God Bless, remember, there are good moments too but the frustration and stress goes with the territory, this board has been a blessing to me in just knowing others go through it too and do understand! DeeDee mom of Aslynne 15, NT Elissa 13 AS, ADHD, ODD and mood disorder nos Tynan 6 NT and soon step mom of 2, 4 and 8 yr olds who are also NT asp aut <asp_aut@...> wrote: Hello,I have two kids my son is 6 with {adhd} and on the way of being diagnosed with Aspergers. I have been seeing alot of changes in him. He seem to get worse every. This was his First yr. In school and his teacher didn't know how or what to do for him . She made out to me that there was something was really wrong with him she wrote me a note home and said that he talked about morbid things and that he done ritual type motions. I cried for days. So needless to say he failed school , He is going to be 7 in grade " k " his daily meds, are concerta 18mg,and 27mg. Tenex 1mg, 2 in morn, and 2 at night . He got to be so aggressive to his little sister she is 4 . He got to were he was hitting her so hard it was knocking the wind out of her .So the doc. put him on the Tenex . He does not sleep very good at first the Tenex was helping but not know. He is very little for his age he only weight about 34 lb. His skin color is very pale he is verbal but still very,very quite at times until his sister starts getting on his nerve's thin his hands go over his ears and he starts rocking thin he gets very mad . Some times people get mad an aggravated at him because he want answer them . I ted to do thing for him even though I know he can do it. I do it before I think. Thank you for listing . __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2006 Report Share Posted July 8, 2006 Hi Sara, I'm not bothered by your email address. It would only bother me in the event someone writes to you for more information and you try to sell it to them. (A common marketing tactic). People participating here are sick. People who take advantage of their limited energy just to make a buck are not welcome. This goes for everybody: If you are selling something, then know that this is not the place to market it. If you're here to really participate, you're more than welcome. penny Sara <satellitesab@...> wrote: I changed my mind, I am NOT leaving this group. I have as much right to share my experiences as any other person, and I am not willing to let one person with a bad attitude chase me off. But I guess I will keep my experiences to myself from now on and be a silent observer.Penny, I am sorry if you were bothered by my email address. Living pain free is my goal, it is an affirmation of sorts. Perhaps it is silly, but it is a daily reminder of where I want to be, and if it helps me get there, then use it I shall.To answer your question, my primary problem seem to be a result of systemic candida infection. Once I was able to get that under control, my other symptoms became more manageable. The supplementation, along with a total overhaul of my eating habits, brought my serum candida levels down. At the same time, my supplements helped to specifically reduce inflammation. I still have flareups, and a whole slew of trouble spots, but I am able to carry on.Living pain free, one day at a time,Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2006 Report Share Posted July 8, 2006 "The supplementation, along with a total overhaul of my eating habits, brought my serum Candida levels down." Well , there's a thing , Candida in serum is a life threatening condition , usually associated with end stage illness's such as AIDS & cancer with it comes a 75% Morbidity risk, the actual term for it is candidemia So you've done extremely well with your supplements .Yes I am cynical . but i'm willing to be educated , tell us specifics of your tests , How you avoid toxic overload from $250 worth of supps a month and why are you treating yourself when apparently you have a doc who tests and accepts your condition has an infectious cause ... -----Original Message-----From: infections [mailto:infections ]On Behalf Of SaraSent: 08 July 2006 02:19infections Subject: [infections] (unknown) I changed my mind, I am NOT leaving this group. I have as much right to share my experiences as any other person, and I am not willing to let one person with a bad attitude chase me off. But I guess I will keep my experiences to myself from now on and be a silent observer.Penny, I am sorry if you were bothered by my email address. Living pain free is my goal, it is an affirmation of sorts. Perhaps it is silly, but it is a daily reminder of where I want to be, and if it helps me get there, then use it I shall.To answer your question, my primary problem seem to be a result of systemic candida infection. Once I was able to get that under control, my other symptoms became more manageable. The supplementation, along with a total overhaul of my eating habits, brought my serum candida levels down. At the same time, my supplements helped to specifically reduce inflammation. I still have flareups, and a whole slew of trouble spots, but I am able to carry on.Living pain free, one day at a time,Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2006 Report Share Posted July 8, 2006 It is so good knowing that I am not the only one dealing with sibling issues. is eleven and Adam is eight. He goes to the kid connection meetings here in our town to be with other kids who have special needs siblings and it has really helped him deal wirh her. He wishes all the time that she could talk and play with him like a "normal" sister. He has to deal with his anger towards her cause she really makes him mad like when she tries to bite him or take his toys from him. Charlotte <scottdesigns@...> wrote: OMG DeeDee, I so live that in reverse! My son is 12 ½ (aspie) and my daughter (nt) is 5 ½, I constantly worry about her getting hurt because she is 41lbs and he’s 144lbs! They fight CONSTANTLY even being 7 years apart. Some days I want to run away!!! Charlotte From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of d corbinSent: Wednesday, July 05, 2006 3:55 PMAutism and Aspergers Treatment Subject: Re: (unknown) I understand what you are going through. My AS child is my middle child who is 13, I have heard similar things re her for years. The thing is, at least with her and the "morbid things" is that she sees things so black and white that it is not truly morbid to her but just another "thing, topic whatever". We had an issue a couple months back where she made one of those little hand games the kids play with paper to find out how many kids they will have or who they will fall in love with etc. (where it fits on fingers and thumbs and they count move it how many times you say and then open that flap and read it) ANYWAY, it was in what horrific accident you would die. She had no clue why her aunts and everyone were so upset, to her it was just like the other games. Sometimes, it is scary. I remember before she was diagnosed crying and being SO upset and calling her dad and stepmom asking what is wrong with her, is she psychotic or something? And she was only 7!! As she gets older, I can't necessarily get it across to her WHY certain things are not appropriate but I have pretty much gotten her to understand she can't discuss them if she doesn't see why! SO in some ways it does get better. As far as the violence against younger sibs, mine are 7 years apart and she knocked my 6 yr olds front top tooth into his gum on Thursday (right before her therapist was supposed to be here too!) and I had to take him to the dentist to have it pulled. We are working on it. Unfortunately, her emotional age is close to his actual age so they bicker at the same level CONSTANTLY! I am currently enjoying her being at dads for a week so have some peace. We are working on that one in therapy I will let you know if we find something to try that works! Good luck and God Bless, remember, there are good moments too but the frustration and stress goes with the territory, this board has been a blessing to me in just knowing others go through it too and do understand! DeeDee mom of Aslynne 15, NT Elissa 13 AS, ADHD, ODD and mood disorder nos Tynan 6 NT and soon step mom of 2, 4 and 8 yr olds who are also NTasp aut <asp_aut@...> wrote: Hello,I have two kids my son is 6 with {adhd} and on the way of being diagnosed with Aspergers. I have been seeing alot of changes in him. He seem to get worse every. This was his First yr. In school and his teacher didn't know how or what to do for him . She made out to me that there was something was really wrong with him she wrote me a note home and said that he talked about morbid things and that he done ritual type motions. I cried for days. So needless to say he failed school , He is going to be 7 in grade "k" his daily meds, are concerta 18mg,and 27mg. Tenex 1mg, 2 in morn, and 2 at night . He got to be so aggressive to his little sister she is 4 . He got to were he was hitting her so hard it was knocking the wind out of her .So the doc. put him on the Tenex . He does not sleep very good at first the Tenex was helping but not know. He is very little for his age he only weight about 34 lb. His skin color is very pale he is verbal but still very,very quite at times until his sister starts getting on his nerve's thin his hands go over his ears and he starts rocking thin he gets very mad . Some times people get mad an aggravated at him because he want answer them . I ted to do thing for him even though I know he can do it. I do it before I think. Thank you for listing . __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 I have tried to call the local ARC about sib shops for my daughter and no one ever calls be back! Thanks for mentioning it again, I think I will call the US supervisor tomorrow and see if I can get somewhere. Charlotte From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of sharon boone Sent: Saturday, July 08, 2006 11:57 AM Autism and Aspergers Treatment Subject: RE: (unknown) It is so good knowing that I am not the only one dealing with sibling issues. is eleven and Adam is eight. He goes to the kid connection meetings here in our town to be with other kids who have special needs siblings and it has really helped him deal wirh her. He wishes all the time that she could talk and play with him like a " normal " sister. He has to deal with his anger towards her cause she really makes him mad like when she tries to bite him or take his toys from him. Charlotte <scottdesigns@...> wrote: OMG DeeDee, I so live that in reverse! My son is 12 ½ (aspie) and my daughter (nt) is 5 ½, I constantly worry about her getting hurt because she is 41lbs and he’s 144lbs! They fight CONSTANTLY even being 7 years apart. Some days I want to run away!!! Charlotte From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of d corbin Sent: Wednesday, July 05, 2006 3:55 PM Autism and Aspergers Treatment Subject: Re: (unknown) I understand what you are going through. My AS child is my middle child who is 13, I have heard similar things re her for years. The thing is, at least with her and the " morbid things " is that she sees things so black and white that it is not truly morbid to her but just another " thing, topic whatever " . We had an issue a couple months back where she made one of those little hand games the kids play with paper to find out how many kids they will have or who they will fall in love with etc. (where it fits on fingers and thumbs and they count move it how many times you say and then open that flap and read it) ANYWAY, it was in what horrific accident you would die. She had no clue why her aunts and everyone were so upset, to her it was just like the other games. Sometimes, it is scary. I remember before she was diagnosed crying and being SO upset and calling her dad and stepmom asking what is wrong with her, is she psychotic or something? And she was only 7!! As she gets older, I can't necessarily get it across to her WHY certain things are not appropriate but I have pretty much gotten her to understand she can't discuss them if she doesn't see why! SO in some ways it does get better. As far as the violence against younger sibs, mine are 7 years apart and she knocked my 6 yr olds front top tooth into his gum on Thursday (right before her therapist was supposed to be here too!) and I had to take him to the dentist to have it pulled. We are working on it. Unfortunately, her emotional age is close to his actual age so they bicker at the same level CONSTANTLY! I am currently enjoying her being at dads for a week so have some peace. We are working on that one in therapy I will let you know if we find something to try that works! Good luck and God Bless, remember, there are good moments too but the frustration and stress goes with the territory, this board has been a blessing to me in just knowing others go through it too and do understand! DeeDee mom of Aslynne 15, NT Elissa 13 AS, ADHD, ODD and mood disorder nos Tynan 6 NT and soon step mom of 2, 4 and 8 yr olds who are also NT asp aut <asp_aut@...> wrote: Hello,I have two kids my son is 6 with {adhd} and on the way of being diagnosed with Aspergers. I have been seeing alot of changes in him. He seem to get worse every. This was his First yr. In school and his teacher didn't know how or what to do for him . She made out to me that there was something was really wrong with him she wrote me a note home and said that he talked about morbid things and that he done ritual type motions. I cried for days. So needless to say he failed school , He is going to be 7 in grade " k " his daily meds, are concerta 18mg,and 27mg. Tenex 1mg, 2 in morn, and 2 at night . He got to be so aggressive to his little sister she is 4 . He got to were he was hitting her so hard it was knocking the wind out of her .So the doc. put him on the Tenex . He does not sleep very good at first the Tenex was helping but not know. He is very little for his age he only weight about 34 lb. His skin color is very pale he is verbal but still very,very quite at times until his sister starts getting on his nerve's thin his hands go over his ears and he starts rocking thin he gets very mad . Some times people get mad an aggravated at him because he want answer them . I ted to do thing for him even though I know he can do it. I do it before I think. Thank you for listing . __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 I'm going to have to put RZ on my resume', I had it for a while but don't remember the symptoms. If you'll remind me of the symptoms, I'll write them down so I'll know the next time someone asks. LOL Why do doctors always have to " practice " ? If the rest of us had to practice our trade, we wouldn't be working! Welcome to the group. Dennis in Eastexas " You can't always fix it with money " [ ] (unknown) Hi Everyone, I'm new here. I was diagnosed with RZ a few years ago, but fortunately it never was bad. Last year I was diagnosed with Lyme Disease after several months of agonizing pain. Supposedly, the antibiotics I took should have gotten rid of the Lyme. The pain has returned. Some days it's my wrist, some days my feet or knees. Usually it's only on one side. The pain moves from joint to joint. Yesterday, it was my shoulder. So now I'm not sure if it's RA or Lymes causing the pain. I am going to see a new rheumatologist this week, as my other quit his practice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 I am very glad to hear I am not the only one also! I worry so much re that, where do I draw the line for her being a danger to the others etc. But she is SO good with my future stepkids who are 2 and 4. Very patient and concerned. Sometimes she goes a little overboard with play with them etc but she does pay attention. Of course that makes my son even more angry (jealous) so they fight more. Seems like all my fiancee and I do when all the kids are together is fight anymore..... IF it is just mine or just his, fine but when the "Brady bunch"( six between us, five who are here regularly" get together, watch out! Elissa does do pretty well with that now, although she still refuses the travel part. (his family/kids live two hours away, she just can't take the car trips often) She has done pretty well with the changes though, even the engagement, not nearly as many meltdowns re these issues lately. sharon boone <boonesnuthouse@...> wrote: It is so good knowing that I am not the only one dealing with sibling issues. is eleven and Adam is eight. He goes to the kid connection meetings here in our town to be with other kids who have special needs siblings and it has really helped him deal wirh her. He wishes all the time that she could talk and play with him like a "normal" sister. He has to deal with his anger towards her cause she really makes him mad like when she tries to bite him or take his toys from him. Charlotte <scottdesigns@...> wrote: OMG DeeDee, I so live that in reverse! My son is 12 ½ (aspie) and my daughter (nt) is 5 ½, I constantly worry about her getting hurt because she is 41lbs and he’s 144lbs! They fight CONSTANTLY even being 7 years apart. Some days I want to run away!!! Charlotte From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of d corbinSent: Wednesday, July 05, 2006 3:55 PMAutism and Aspergers Treatment Subject: Re: (unknown) I understand what you are going through. My AS child is my middle child who is 13, I have heard similar things re her for years. The thing is, at least with her and the "morbid things" is that she sees things so black and white that it is not truly morbid to her but just another "thing, topic whatever". We had an issue a couple months back where she made one of those little hand games the kids play with paper to find out how many kids they will have or who they will fall in love with etc. (where it fits on fingers and thumbs and they count move it how many times you say and then open that flap and read it) ANYWAY, it was in what horrific accident you would die. She had no clue why her aunts and everyone were so upset, to her it was just like the other games. Sometimes, it is scary. I remember before she was diagnosed crying and being SO upset and calling her dad and stepmom asking what is wrong with her, is she psychotic or something? And she was only 7!! As she gets older, I can't necessarily get it across to her WHY certain things are not appropriate but I have pretty much gotten her to understand she can't discuss them if she doesn't see why! SO in some ways it does get better. As far as the violence against younger sibs, mine are 7 years apart and she knocked my 6 yr olds front top tooth into his gum on Thursday (right before her therapist was supposed to be here too!) and I had to take him to the dentist to have it pulled. We are working on it. Unfortunately, her emotional age is close to his actual age so they bicker at the same level CONSTANTLY! I am currently enjoying her being at dads for a week so have some peace. We are working on that one in therapy I will let you know if we find something to try that works! Good luck and God Bless, remember, there are good moments too but the frustration and stress goes with the territory, this board has been a blessing to me in just knowing others go through it too and do understand! DeeDee mom of Aslynne 15, NT Elissa 13 AS, ADHD, ODD and mood disorder nos Tynan 6 NT and soon step mom of 2, 4 and 8 yr olds who are also NTasp aut <asp_aut@...> wrote: Hello,I have two kids my son is 6 with {adhd} and on the way of being diagnosed with Aspergers. I have been seeing alot of changes in him. He seem to get worse every. This was his First yr. In school and his teacher didn't know how or what to do for him . She made out to me that there was something was really wrong with him she wrote me a note home and said that he talked about morbid things and that he done ritual type motions. I cried for days. So needless to say he failed school , He is going to be 7 in grade "k" his daily meds, are concerta 18mg,and 27mg. Tenex 1mg, 2 in morn, and 2 at night . He got to be so aggressive to his little sister she is 4 . He got to were he was hitting her so hard it was knocking the wind out of her .So the doc. put him on the Tenex . He does not sleep very good at first the Tenex was helping but not know. He is very little for his age he only weight about 34 lb. His skin color is very pale he is verbal but still very,very quite at times until his sister starts getting on his nerve's thin his hands go over his ears and he starts rocking thin he gets very mad . Some times people get mad an aggravated at him because he want answer them . I ted to do thing for him even though I know he can do it. I do it before I think. Thank you for listing . __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 I live in rural sw Iowa and there are not the resources here there are many other places. We had to qualify my dd for the mental health waiver to get ANY help out here. We now have a therapist who comes into the home 1x per week for 2 hours and then usually the same afternoon, takes her out for "social skills training". She is not an autism specialist, there are very few of those around here. BUT she does have basic understanding of Elissas issues and how to deal with her and she volunteered to drive 70 miles one way for this "abuse" once a week. I mean "abuse" for , the therapist, not my dd or us. Just that my dd is often unresponsive or downright hostile to anyone or anything having to do with therapy etc. But is slowly getting her to open up and showing remarkable patience with her and all of us in general. She did not overreact and freak out on Elissa re the "knocking her brothers tooth out thing two weeks ago" I was worried she would specially since it happened right before she got here, but she didn't. She took it in stride and talked to Sis about it. (it was a baby tooth and was getting ready to come out, she just helped it by smacking him in the mouth when they were fighting, which she "didn't mean to hit him in the mouth, just to smack his cheek". We are still working on her understanding that it isn't ok to hit as long as you "don't MEAN to hurt someone like that". IT is the action that is wrong, not just the consequences. BUT understanding the consequences of her actions has never been an easy thing with Sis. Point is I guess, there are no groups like that here for the kids or the adults! It is AT LEAST 55 miles to the nearest support groups I could find and we simply cannot go that far on a regular basis for meetings etc. REALLY wish there were more resources here but the lifestyle being more laid back etc has been WONDERFUL for the whole family so I guess you can't have it all~! lol God Bless, DeeDeeCharlotte <scottdesigns@...> wrote: I have tried to call the local ARC about sib shops for my daughter and no one ever calls be back! Thanks for mentioning it again, I think I will call the US supervisor tomorrow and see if I can get somewhere. Charlotte From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of sharon booneSent: Saturday, July 08, 2006 11:57 AMAutism and Aspergers Treatment Subject: RE: (unknown) It is so good knowing that I am not the only one dealing with sibling issues. is eleven and Adam is eight. He goes to the kid connection meetings here in our town to be with other kids who have special needs siblings and it has really helped him deal wirh her. He wishes all the time that she could talk and play with him like a "normal" sister. He has to deal with his anger towards her cause she really makes him mad like when she tries to bite him or take his toys from him. Charlotte <scottdesigns@...> wrote: OMG DeeDee, I so live that in reverse! My son is 12 ½ (aspie) and my daughter (nt) is 5 ½, I constantly worry about her getting hurt because she is 41lbs and he’s 144lbs! They fight CONSTANTLY even being 7 years apart. Some days I want to run away!!! Charlotte From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of d corbinSent: Wednesday, July 05, 2006 3:55 PMAutism and Aspergers Treatment Subject: Re: (unknown) I understand what you are going through. My AS child is my middle child who is 13, I have heard similar things re her for years. The thing is, at least with her and the "morbid things" is that she sees things so black and white that it is not truly morbid to her but just another "thing, topic whatever". We had an issue a couple months back where she made one of those little hand games the kids play with paper to find out how many kids they will have or who they will fall in love with etc. (where it fits on fingers and thumbs and they count move it how many times you say and then open that flap and read it) ANYWAY, it was in what horrific accident you would die. She had no clue why her aunts and everyone were so upset, to her it was just like the other games. Sometimes, it is scary. I remember before she was diagnosed crying and being SO upset and calling her dad and stepmom asking what is wrong with her, is she psychotic or something? And she was only 7!! As she gets older, I can't necessarily get it across to her WHY certain things are not appropriate but I have pretty much gotten her to understand she can't discuss them if she doesn't see why! SO in some ways it does get better. As far as the violence against younger sibs, mine are 7 years apart and she knocked my 6 yr olds front top tooth into his gum on Thursday (right before her therapist was supposed to be here too!) and I had to take him to the dentist to have it pulled. We are working on it. Unfortunately, her emotional age is close to his actual age so they bicker at the same level CONSTANTLY! I am currently enjoying her being at dads for a week so have some peace. We are working on that one in therapy I will let you know if we find something to try that works! Good luck and God Bless, remember, there are good moments too but the frustration and stress goes with the territory, this board has been a blessing to me in just knowing others go through it too and do understand! DeeDee mom of Aslynne 15, NT Elissa 13 AS, ADHD, ODD and mood disorder nos Tynan 6 NT and soon step mom of 2, 4 and 8 yr olds who are also NTasp aut <asp_aut@...> wrote: Hello,I have two kids my son is 6 with {adhd} and on the way of being diagnosed with Aspergers. I have been seeing alot of changes in him. He seem to get worse every. This was his First yr. In school and his teacher didn't know how or what to do for him . She made out to me that there was something was really wrong with him she wrote me a note home and said that he talked about morbid things and that he done ritual type motions. I cried for days. So needless to say he failed school , He is going to be 7 in grade "k" his daily meds, are concerta 18mg,and 27mg. Tenex 1mg, 2 in morn, and 2 at night . He got to be so aggressive to his little sister she is 4 . He got to were he was hitting her so hard it was knocking the wind out of her .So the doc. put him on the Tenex . He does not sleep very good at first the Tenex was helping but not know. He is very little for his age he only weight about 34 lb. His skin color is very pale he is verbal but still very,very quite at times until his sister starts getting on his nerve's thin his hands go over his ears and he starts rocking thin he gets very mad . Some times people get mad an aggravated at him because he want answer them . I ted to do thing for him even though I know he can do it. I do it before I think. Thank you for listing . __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 The thing is, at least with her and the " morbid things " is that she sees things so black and white that it is not truly morbid to her but just another " thing, topic whatever " . We had an issue a couple months back where she made one of those little hand games the kids play with paper to find out how many kids they will have or who they will fall in love with etc. (where it fits on fingers and thumbs and they count move it how many times you say and then open that flap and read it) ANYWAY, it was in what horrific accident you would die. She had no clue why her aunts and everyone were so upset, to her it was just like the other games. Sometimes, it is scary. Hi I'm just writing from personal experience...my husband is a Crime Scene Investigator for his P.D. and being married to a cop, we both have a morbid sense of humor. Its required for our life and for a lot of jobs in our world it makes things a lot easier to handle. It doesn't make her wierd. It makes her pratical. There's life and there's death. Nothing we can do can stop it so why not have a little fun with it and not fear it. I have little fear of death. I am also a Christian. And her hand game I find quite funny. Just make sure that she doesn't start crossing the lines into abuse of herself or predatory abuse of others. And anger/aggression towards her sibling doesn't necessarily fall into this category...Lord knows the fights my brother and I had. lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Hi Marcia, I also experience bad nausea for about 2 weeks. I absolutely couln't hold anything down and I was really thirsty and dehydrated. The only thing that helped me was Pediasure with alot of crush ice. Pediasure helped my degydration and the ice help me not to drink to fast. I would take small sips. The end of my second week, I felt much better and was able to take some spoons fill of broth. Just take in what you can handle do not try to eat your jello and broth all at once. It will get better I promise. I am on my 3rd week and I'm drinking water, juice and my broth with no problems. I still can't handle the jello. I'm not sure what it is, but my system does not like jello right now. Good luck, promise it will get better. vecchionemarcia <mvecchione@...> wrote: I was banded on 6/6/06 and for the last 2 weeks I have had very bad nausea - like I had when I was pregnant. Anyone else experience this and what can be done about it? Thanks, Marcia Michel Sneak preview the all-new .com. It's not radically different. Just radically better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 I did not mean that necessarily the "game" itself was totally out of line, just the fact that she was "playing" it with 7 and 10 year olds and that she did not understand when it might be "socially appropriate" to play or not to play. I myself have been accused of having a "morbid sense of humor" or inappropriate humor. I deal with difficult things by joking to "ease the tension" I am the one who will make a comment or crack a joke because "it had to be done". so I do have experience with just joking about things that others consider to be inappropriate, it was more the context than the subject. Sorry I was unclear on that. <tyris620@...> wrote: The thing is, at least with her and the "morbid things" is that she sees things so black and white that it is not truly morbid to her but just another "thing, topic whatever". We had an issue a couple months back where she made one of those little hand games the kids play with paper to find out how many kids they will have or who they will fall in love with etc. (where it fits on fingers and thumbs and they count move it how many times you say and then open that flap and read it) ANYWAY, it was in what horrific accident you would die. She had no clue why her aunts and everyone were so upset, to her it was just like the other games. Sometimes, it is scary. Hi I'm just writing from personal experience...my husband is a Crime Scene Investigator for his P.D. and being married to a cop, we both have a morbid sense of humor. Its required for our life and for a lot of jobs in our world it makes things a lot easier to handle. It doesn't make her wierd. It makes her pratical. There's life and there's death. Nothing we can do can stop it so why not have a little fun with it and not fear it. I have little fear of death. I am also a Christian. And her hand game I find quite funny. Just make sure that she doesn't start crossing the lines into abuse of herself or predatory abuse of others. And anger/aggression towards her sibling doesn't necessarily fall into this category...Lord knows the fights my brother and I had. lol Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Hi Marcia, My daughter Jacqui was banded 7-3-06 and had nausea when she woke up for 2 days. I bought her some Isopure liquid (clear) protien drinks and she hasn't had the nausea since drinking one a day. Make sure your getting in enough fluids, dehydration can cause nausea as well. Also, I think when the band is tight or your opening is swollen it can make you feel nauseous too. Maybe try a little maalox liquid or peptobismol to see if it helps. Just some suggestions to try. Hope it goes away soon!! Dana -------------- Original message -------------- From: "vecchionemarcia" <mvecchione@...> I was banded on 6/6/06 and for the last 2 weeks I have had very bad nausea - like I had when I was pregnant. Anyone else experience this and what can be done about it? Thanks, Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 i was wondering if you can give coconut oil to cats and dogs. i have a cat who sheds like crazy, and i was wondering if this would help her shed less. any info would be much appreciated. thanks. anita (unknown) I feed it to my dog all the time..he loves it..my cats get it too but they have to be abit " snooty " so I put it on the paws...lol --------------------------------- Music Unlimited - Access over 1 million songs.Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 http://www.google.com/search?sourceid=navclient & ie=UTF-8 & rls=GGLG,GGLG:2006-19,G\ GLG:en & q=COCONUT+OIL+BENEFIT+FOR+DOGS+CATS Healing Waggs, joy http://www.theheelingtouch.com/ YL#764-672 dogdrops/ --------------------------------- Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Hi i'm new at all this but i wanted to say I understand where everyone is coming from I have a 3 yr old with asd and he can be a real hand full and his 5 yr old sister wishes he would play and talk to her i really don't know how to explain this to her but at times i think she understands which is a big help. I'm probably off topic but its so comforting knowing i'm not alone. Bessie LenerSon = Gavin (asd)Daughter= Charlotte <scottdesigns@...> wrote: I have tried to call the local ARC about sib shops for my daughter and no one ever calls be back!� Thanks for mentioning it again, I think I will call the US supervisor tomorrow and see if I can get somewhere. Charlotte From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of sharon boone Sent: Saturday, July 08, 2006 11:57 AM Autism and Aspergers Treatment Subject: RE: (unknown) It is so good knowing that I am not the only one dealing with sibling issues. is eleven and Adam is eight. He goes to the kid connection meetings here in our town to be with other kids who have special needs siblings and it has really helped him deal wirh her. He wishes all the time that she could talk and play with him like a "normal" sister. He has to deal with his anger towards her cause she really makes him mad like when she tries to bite him or take his toys from him. Charlotte <scottdesigns@...> wrote: OMG DeeDee, I so live that in reverse! My son is 12 � (aspie) and my daughter (nt) is 5 �, I constantly worry about her getting hurt because she is 41lbs and he’s 144lbs! They fight CONSTANTLY even being 7 years apart. Some days I want to run away!!! Charlotte From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of d corbin Sent: Wednesday, July 05, 2006 3:55 PM Autism and Aspergers Treatment Subject: Re: (unknown) I understand what you are going through. My AS child is my middle child who is 13, I have heard similar things re her for years. The thing is, at least with her and the "morbid things" is that she sees things so black and white that it is not truly morbid to her but just another "thing, topic whatever". We had an issue a couple months back where she made one of those little hand games the kids play with paper to find out how many kids they will have or who they will fall in love with etc. (where it fits on fingers and thumbs and they count move it how many times you say and then open that flap and read it) ANYWAY, it was in what horrific accident you would die. She had no clue why her aunts and everyone were so upset, to her it was just like the other games. Sometimes, it is scary. I remember before she was diagnosed crying and being SO upset and calling her dad and stepmom asking what is wrong with her, is she psychotic or something? And she was only 7!! As she gets older, I can't necessarily get it across to her WHY certain things are not appropriate but I have pretty much gotten her to understand she can't discuss them if she doesn't see why! SO in some ways it does get better. As far as the violence against younger sibs, mine are 7 years apart and she knocked my 6 yr olds front top tooth into his gum on Thursday (right before her therapist was supposed to be here too!) and I had to take him to the dentist to have it pulled. We are working on it. Unfortunately, her emotional age is close to his actual age so they bicker at the same level CONSTANTLY! I am currently enjoying her being at dads for a week so have some peace. We are working on that one in therapy I will let you know if we find something to try that works! Good luck and God Bless, remember, there are good moments too but the frustration and stress goes with the territory, this board has been a blessing to me in just knowing others go through it too and do understand! DeeDee mom of Aslynne 15, NT Elissa 13 AS, ADHD, ODD and mood disorder nos Tynan 6 NT and soon step mom of 2, 4 and 8 yr olds who are also NT asp aut <asp_aut@...> wrote: Hello,I have two kids my son is 6 with {adhd} and on the way of being diagnosed with Aspergers. I have been seeing alot of changes in him. He seem to get worse every. This was his First yr. In school and his teacher didn't know how or what to do for him . She made out to me that there was something was really wrong with him she wrote me a note home and said that he talked about morbid things and that he done ritual type motions. I cried for days. So needless to say he failed school , He is going to be 7 in grade "k" his daily meds, are concerta 18mg,and 27mg. Tenex 1mg, 2 in morn, and 2 at night . He got to be so aggressive to his little sister she is 4 . He got to were he was hitting her so hard it was knocking the wind out of her .So the doc. put him on the Tenex . He does not sleep very good at first the Tenex was helping but not know. He is very little for his age he only weight about 34 lb. His skin color is very pale he is verbal but still very,very quite at times until his sister starts getting on his nerve's thin his hands go over his ears and he starts rocking thin he gets very mad . Some times people get mad an aggravated at him because he want answer them . I ted to do thing for him even though I know he can do it. I do it before I think. Thank you for listing . __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 > > i was wondering if you can give coconut oil to cats and dogs. i have a cat who sheds like crazy, and i was wondering if this would help her shed less. any info would be much appreciated. thanks. anita > It's probably fine for dogs as they are omnivores. But, for cats, true carnivores, it's not something that could be a natural part of their diets so I'm a lot more cautious. I've offered some to my cats and 2 of them have been somewhat interested in it on occasion. I think cats _usually_ have pretty good instincts about what they should or shouldn't eat, so I let them decide about the coconut oil. Fish oil definately helps with shedding too. A couple of the cats really seem to like it a lot, even though I almost have to hold my nose when I open up a capsule for them to lick up. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 In a message dated 7/19/2006 11:07:51 AM Eastern Standard Time, mikecarrie01@... writes: Everyone is buying land in the mountains now to get away from the city so it is too expensive when only 5 years ago no one cared a whit about it! This is happening all around. The problem is that the people who are leaving the city simply bring it along with them eventually. It is typical of settlement patterns. First the trailblazers go out ahead settling the new territory (it would not surprise me if many of those people weren't AS to some degree). More settlers followed them, often pushing the trailblazers further out. Eventually, enough people would move in to establish towns and cities. What we are seeing today is people leaving the cities because of high taxes and crime. When they move out, the want their city conveniences close by, so malls and everything else follow them. That only encourages more people to flee the cities and the spread continues. Before long there might not be many areas of true country or outdoors left because so many people wanted their piece of it, but all they succeeded in doing was moving into a new subdivision with all the amenities. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 Hi Esther, Lynne G. is a friend of mine who is French Canadian and although I think she has achieved a great command over the English language. Her native tongue is French. The idea of someone doing a scam on so many sick people never entered out minds and she wasn't sure what a scammer was. Neither did I. Now, we know., thanks to your previous e-mail. We will watch out for them. Thank you, Dolores Esther Warkov <esther_warkov@...> wrote: Isn't it someone who participates in the list to further their own business agenda? >Yes, what do you mean by scammer? Dolores > >lynneandsantos wrote: >What do you mean Ester.I am afraid I still have trouble understanding >some English words. Lynne G > To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 Abby wrote: > ... since I have no insurance they recommended i > go to MCV since the are more willing to help financially. ... Not having insurance could be a big factor in your decision. It could also be a factor in how soon you get treated. My surgery was $30,000. Some people here have had it done for about half of that. Out patient dilatation should be much much less than that, as long as they don't cause a perforation. Then it could cost more than a myotomy surgery. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 Hi Vonda, I am in Grand Rapids, MI. I see Dr. Nebbeling in Lansing. (517) 323-1833. I just went yesterday, in fact, for a clindamycin IV. He is very nice and helpful. I am also being treated for muscle disease. He is knowledgable about a wide range of alternatives. I've been on AP with him for over a year. Please email with any questions. good luck! Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 Congrats you made it! Mills DOB 3/1/05 280/168/160 http://www.tracyslapband.com From: [mailto: ] On Behalf Of McCrory Sent: Tuesday, August 01, 2006 4:06 AM Subject: (unknown) annamac1999 wishes to join Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2006 Report Share Posted August 5, 2006 Welcome and if you have any question someone in the group usually knows the answer. kathleen Hustad <missjuliah@...> wrote: Hello. Just sending an email to confirm my regristration in the group. Hope this is what I am supposed to do. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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