Guest guest Posted February 1, 2007 Report Share Posted February 1, 2007 Hi Peggy!!! Welcome to the group! Sorry that you have PA but you have found a group of wonderful people that are willing to help and give advice or a shoulder to cry on if needed. I have had PA for 3 years now...at least that was when I was dx. You sure have been through a lot. I am glad that you finally found a doctor who believes you have PA. I can relate on professional not knowing what PA is, I had to go to the ER three weeks ago, and the Dr. asked me why I was taking all the meds. When I told him PA he said he had never heard of such a thing and asked if I meant pseudo arthritis? I said no it is Psoractic Arthritis ask Dr. Cohen he is my rheumy, and he happens to work for Mother Frances which was where I was at the time. He left the room came back and told me I was crazy that there was no such type disease. I said OK I will tell Dr. Cohen next time I see him that you said I was crazy because PA does not exist! I guess that makes him crazy and the PA group that I belong to on . To make a long story short he said what do you want me to do? I said I want phenergran so that I can get rid of this stomach virus. He gave me 25mg. I said normal protocol for a woman my size is 50 mg. " How do you know?? " I am a nurse. " OK well you are getting 25mg.and Lomotil. " I said you don't give Lomotil to a colon cancer survivor. " Well that is what you are getting and that's it. " That was a waste of my time, and to top it all off they called me today Feb.1. to ask how I was feeling!!! I said you are calling 3 weeks later to ask me how I feel??? Well tell the ER doc that I died of PA because all he would give me was 25 mg. he will know what you are talking about, and tell him Dr. Cohen didn't think it was too funny that I am crazy for having a disease that does exist,and your ER doc needs to get a refresher course or stop practicing because telling people what they don't have when they do isn't too professional. She said I didn't know it was 3 weeks ago it says here you were here just a couple of days ago. I said OK as far as Mother Frances knows I died then, and you have a great day!! To the women whose teens have PA you can tell them that if they can handle this disease they are strong teens, I couldn't imagine having it at their age and my hats are off to them for dealing with it the way they are. I admire both of them, for being able to let out how they feel and know that they have caring mom's who are there to listen. To the person who has PA and not P. I am the same way I LOOK DAILY for signs of P and it has been 3 years and nothing!! All I can do is thank GOD because I am not taking anything but the sulfa drug which does nothing but make me sick as a dog, I take 4 in am 4 at lunch and 4 at pm I have got to tell ya I stay in the bathroom a lot!! And I have a permanent yellow stain in my toilet!! Like a dear friend of mine tells me all the time if not for bad luck I wouldn't have any at all, and to keep my chin up! On the brighter side I don't have to have any of my spine fused together it is doing that all on it's own. My hips are so bad my rheumy wanted me to have them replaced 3 years ago. My PCP who has been my PCP for 14 years said no not until you can't walk because of the pain. 2 1/2 years ago I said I can't stand the pain any longer!!! She took out her little triplicate prescription pad and wrote me a script for Advanza 90mg. I can walk pain free!! 3 months ago I went back to her because fatigue was getting the best of me I got another script called Provigil 200mg. scared me to death to take that much so I broke every tablet in half and my fatigue is gone!! Now if only I could get my back to bend just a little so that I could still sweep the kitchen floor, and get my fine motor skills back in my hands so that I could really write something besides my name I would be almost normal again!!! Just kidding will never be " Normal " again, I have to find humor where and when I can so that I can stay sane. Which leads me to another subject.... I have a BF!!!! Can you believe it??? Me either!!! He has Lupus which I think is why he can understand how I feel, and he is wonderful!! I look for his wings all the time and I just can't see them. He does such wonderful things for me I wish I could clone him and give his clone to Besty, she could really use him right now. He did tell me that if I ever wanted to go see her to let him know way ahead of time on when I wanted to go and he would send me on a plane. Betz I hope you are able to read this. He says he is stubborn, hardheaded, set in his ways and too OLD to change but, I can tell ya after 2 weeks of not seeing me just talking to me on the phone he has let me know that he can't live without me and HE NEVER says the L word to anyone. Guess what he told me 2 nights ago to my face??? I LOVE YOU SHARON. Please don't ever leave me I couldn't live without you in my life!! Like I said I look for the wings just can't see them. will have to say in return that he is the best thing that could have happened to me at this point in my life because I really didn't think that I would find someone to care about me with all my illnesses. Just goes to prove to me again that there really is a God and he is letting me know that he is there for me. Well since I have almost turned this into a book and Kathy is going to have to edit it, I will close for now, and I hope and pray for all 3,000 of my Internet family, and I love all of you dearly and love reading the posts. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2007 Report Share Posted February 2, 2007 Welcome to the group Peggy... Love and Peace Always,Shaun Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2007 Report Share Posted February 3, 2007 HI n, Welcome to the group. My son is 11 with asperger's syndrome. We get a lot of good information in this group. When we read a post, sometimes we can help others as well. Claudine _____ From: [mailto: ] On Behalf Of n Sent: Saturday, February 03, 2007 1:02 PM Subject: ( ) New Member Hi, I am a friend of Tanna's. She invited me to join. My name is n, and I have a 12 yr old son with Aspergers. Sure makes life interesting! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 In a message dated 04/01/2007 13:28:57 GMT Standard Time, bluequiltbook@... writes: I am a 60 year old female with a multitude of autoimmune diseases including PA. Hi bluequiltbook, Welcome, a late welcome to the group. I'm glad you found us but sorry you are struggling so much at the moment. That's unfortunate that the Enbrel caused problems with your lungs. I don't think I've heard of that one among the possible side effects. It's terrible to be in a Catch 22 situation where you feel that the exercise would do you a lot of good but you can't get to the pool to do the exercise. I hope that in the near future you and your Rheumy can find something that will get you to a better level than you are at the moment. Good luck, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2007 Report Share Posted February 13, 2007 > > Hi There! > > I am new member to this group and have been recently diagnosed with PA > last week. I am 37 years old with no prior medical history. I just > starting my initial treatment which includes medications. I had to > almost force my PCP to give me the referral to a Rhemmy. I believe had > P and then developed PA within 2-3 months time frame. I have back pain, > neck pain, Rt. arm and have developed a problem in my Rt. 1st finger > joint. I am feeling a little better, as I just start with the > medication for a few days. To resolve my symptoms I have been swimming > laps at the YMCA, using heat pads and neck wraps. I find that my > symptoms seem to resolve when I relax. This site offers some really > great information and I am very appreciative of that. > > I wanted to inquire if anyone has clear information on the cause of > this disease. I have been told it is known to be genetically pasted, > however I believe it has another cause STRESS. I note this as I had an > increase in my workload, let's call it an overload and then a situation > with another employee, which we can call workplace violence. Please > advise if there are websites or any contacts. > > Thanks for making me feel welcome here. > Sherri > > [Editor's Note: Welcome, Sherri. No one knows the precise cause of the disease but studies to date indicate that there is likely a strong genetic component. A form of the disease, ankylosing spondylitis, IS genetically-based. Stress has been demonstrated to be dangerous to health generally and to most diseases as well. Stress does not cause heart disease, but makes it worse. It does not cause cancer, but makes fighting the disease more difficult. It does not cause high blood pressure, but elevates it if you have a problem with blood pressure. It does not cause PA, but it often causes flares (outbreaks) and usually causes our symptoms to worsen. So, technically, stress does not cause P or PA but for those of us who have these, it can dramatically worsen our symptoms. Many of us have high-stress lives and to some extent they cannot be avoided. It is therefore important that we learn how to cope with stressful situations better. This means learning relaxation techniques such as meditation or yoga, exercise, anger management, prayer. Many people find it helpful to take a few minutes every day reading or doing something else they find relaxing. Obviously, it would be best if we could eliminate stress from our lives but that is not always possible, so learning how to control and manage stress is the next best thing. Kathy F.] > Thanks Kathy for your feedback. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2007 Report Share Posted February 13, 2007 Just a note on the cause of p. In my daughters case we were told by one of her many Dr's that she first had a viris and that left the door open for p to set in???? that has been a while back, and I never asked another Doctor. Just thought I'd add my 2 cents. Welcome to the group!! S.C. [Editor's Note: The problem with the virus theory is that it would make P contagious which it is not. The more common thought is that a virus or other shock to the body (e.g. a death in the family, giving birth) triggers a major chemical reaction in the body and that reaction sets off the P which may have been dormant until that point. That makes a lot more sense to me and it fits with scientists having identified the HLA B-27 genetic marker. So, yes, I think a virus can be a trigger but not a cause. JMO. Kathy F.] > > Hi There! > > I am new member to this group and have been recently diagnosed with PA > last week. I am 37 years old with no prior medical history. I just > starting my initial treatment which includes medications. I had to > almost force my PCP to give me the referral to a Rhemmy. I believe had > P and then developed PA within 2-3 months time frame. I have back pain, > neck pain, Rt. arm and have developed a problem in my Rt. 1st finger > joint. I am feeling a little better, as I just start with the > medication for a few days. To resolve my symptoms I have been swimming > laps at the YMCA, using heat pads and neck wraps. I find that my > symptoms seem to resolve when I relax. This site offers some really > great information and I am very appreciative of that. > > I wanted to inquire if anyone has clear information on the cause of > this disease. I have been told it is known to be genetically pasted, > however I believe it has another cause STRESS. I note this as I had an > increase in my workload, let's call it an overload and then a situation > with another employee, which we can call workplace violence. Please > advise if there are websites or any contacts. > > Thanks for making me feel welcome here. > Sherri > > [Editor's Note: Welcome, Sherri. No one knows the precise cause of the disease but studies to date indicate that there is likely a strong genetic component. A form of the disease, ankylosing spondylitis, IS genetically-based. Stress has been demonstrated to be dangerous to health generally and to most diseases as well. Stress does not cause heart disease, but makes it worse. It does not cause cancer, but makes fighting the disease more difficult. It does not cause high blood pressure, but elevates it if you have a problem with blood pressure. It does not cause PA, but it often causes flares (outbreaks) and usually causes our symptoms to worsen. So, technically, stress does not cause P or PA but for those of us who have these, it can dramatically worsen our symptoms. Many of us have high-stress lives and to some extent they cannot be avoided. It is therefore important that we learn how to cope with stressful situations better. This means learning relaxation techniques such as meditation or yoga, exercise, anger management, prayer. Many people find it helpful to take a few minutes every day reading or doing something else they find relaxing. Obviously, it would be best if we could eliminate stress from our lives but that is not always possible, so learning how to control and manage stress is the next best thing. Kathy F.] > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2007 Report Share Posted February 13, 2007 Welcome to the group Sherri. I have great respect for the knowledge that Kathy F. has regarding this disease. In my case, however, I believe STRESS IS the cause. The mechanism according to my own (often faulty) thinking is that when a sudden severe stressful situation occurs in the life of a person, that person may react by almost not doing anything physical. Watching TV or staring at the computer screen. Fortunately or unfortunately, our civilization allows some of us to continue living like this. I think it only takes a couple of weeks of immobility for the joints to start deteriorating. Then the immune system gets involved, etc. I think in the early days of space travel, astronauts developed some health problems because of immobility in the tight space ship. [Editor's Note: Hi, . I guess we won't be sitting on a park bench again any time soon. You've got a slushy mess and we're getting hit with a foot of snow. I agree, totally, that stress is a trigger but I don't believe it is a cause. If it were a cause (or if being a couch potato were a cause), there would be 300 million people in the US alone with P and PA. I believe it triggers the disease for those who have it in them. Kathy F.] mchogblue <mchogblue@...> wrote: [Editor's Note: Welcome, Sherri. No one knows the precise cause of the disease but studies to date indicate that there is likely a strong genetic component. A form of the disease, ankylosing spondylitis, IS genetically-based. Stress has been demonstrated to be dangerous to health generally and to most diseases as well. Stress does not cause heart disease, but makes it worse. It does not cause cancer, but makes fighting the disease more difficult. It does not cause high blood pressure, but elevates it if you have a problem with blood pressure. It does not cause PA, but it often causes flares (outbreaks) and usually causes our symptoms to worsen. So, technically, stress does not cause P or PA but for those of us who have these, it can dramatically worsen our symptoms. Many of us have high-stress lives and to some extent they cannot be avoided. It is therefore important that we learn how to cope with stressful situations better. This means learning relaxation techniques such as meditation or yoga, exercise, anger management, prayer. Many people find it helpful to take a few minutes every day reading or doing something else they find relaxing. Obviously, it would be best if we could eliminate stress from our lives but that is not always possible, so learning how to control and manage stress is the next best thing. Kathy F.] --------------------------------- 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 February 14, 2007 Report Share Posted February 14, 2007 Thank you both for the discussion re: " the stress trigger " of P or PA. After further review, I guess this was the information that I need. Do you know of documented history on the " stress factor " triggering the diease? or causing a " flare up " ? If so, Please advise. Thanks! Sherri [Editor's Note: Sherri, I'm sure if you Google " stress " and " disease " you'll find a lot of documentation as the link between stress and illness is very well documented. In addition, there are 3000 people on this site who can attest to stress making the disease worse. If you are keen to find documentation linking stress and illness, it's there, but you already know that it is a trigger in your own health so the key for you would be to do what you can to reduce stress in your life either by avoiding stressful situations OR, if that is not possible, by learning mechanisms to help you cope better with stress. Documentation is not critical but finding ways that work for you when it comes to handling stress is. Kathy F.] > > Welcome to the group Sherri. > > I have great respect for the knowledge that Kathy F. has regarding this disease. In my case, however, I believe STRESS IS the cause. The mechanism according to my own (often faulty) thinking is that when a sudden severe stressful situation occurs in the life of a person, that person may react by almost not doing anything physical. Watching TV or staring at the computer screen. Fortunately or unfortunately, our civilization allows some of us to continue living like this. I think it only takes a couple of weeks of immobility for the joints to start deteriorating. Then the immune system gets involved, etc. > > I think in the early days of space travel, astronauts developed some health problems because of immobility in the tight space ship. > > > > [Editor's Note: Hi, . I guess we won't be sitting on a park bench again any time soon. You've got a slushy mess and we're getting hit with a foot of snow. I agree, totally, that stress is a trigger but I don't believe it is a cause. If it were a cause (or if being a couch potato were a cause), there would be 300 million people in the US alone with P and PA. I believe it triggers the disease for those who have it in them. Kathy F.] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2007 Report Share Posted February 14, 2007 HI Kathy F. As always, nice to hear from you. I am sorry perhaps I gave the impression that I was generalising. I was talking about my case only. Some time the difference between " trigger " and " cause " is fuzzy. In my case, I believe that if the trigger did not trigger then I wouldn't have PA now. Stay warm and my prayers and thoughts are for and with Betz. wenko kadber <pastoork@...> wrote: Welcome to the group Sherri. I have great respect for the knowledge that Kathy F. has regarding this disease. In my case, however, I believe STRESS IS the cause. The mechanism according to my own (often faulty) thinking is that when a sudden severe stressful situation occurs in the life of a person, that person may react by almost not doing anything physical. Watching TV or staring at the computer screen. Fortunately or unfortunately, our civilization allows some of us to continue living like this. I think it only takes a couple of weeks of immobility for the joints to start deteriorating. Then the immune system gets involved, etc. I think in the early days of space travel, astronauts developed some health problems because of immobility in the tight space ship. [Editor's Note: Hi, . I guess we won't be sitting on a park bench again any time soon. You've got a slushy mess and we're getting hit with a foot of snow. I agree, totally, that stress is a trigger but I don't believe it is a cause. If it were a cause (or if being a couch potato were a cause), there would be 300 million people in the US alone with P and PA. I believe it triggers the disease for those who have it in them. Kathy F.] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2007 Report Share Posted February 15, 2007 Hi, Cat (and anybody else who gets this--I just joined and I am not sure whether replying gets me just Cat or everybody!) It sounds like you have your hands full, but are handling the boys very well! My name is Deb and I just joined the group. We live in Mt. Pleasant and my nine-year-old son has Aspergers. He His current obsession: sports statistics! And he will talk and talk and talk...to anyone, anywhere! received social skills help in public school last year, but very little has been done this year. He is very good natured...most of the time. However, I think I need to get some additional help for him in regard to organization and anger management. However, we moved here after his diagnosis, and I'm not sure who to turn to for assistance. Where are your boys being evaluated? Do you know if there is any physician or agency that coordinates services in this area? I would appreciate any direction you (or anyone) can give! Thanx! Peace, Deb -- In , " Cat " <sushicat69@...> wrote: > > Hi and , welcome. My sons (8 and 10) are going through > the evaluation process right now, although everyone involved is > pretty certain they have a spectrum disorder. They tend to have some > of the same characteristics you describe (thought of as quirky or > eccentric, very good with math and science), although their obsession > is computer/video games. They constantly come to me just to talk to > me, on and on, about the same thing. I try to keep savvy on the > subject so I can appear interested, but sometimes I think it would be > really nice if they could just call a friend. One of my sons also > does the 'laugh too loud' thing. > > Anyway, something you said struck me about your son going to camp and > not using much deoderant, shampoo, etc. I have a 15-year-old son > without Asperger's, and he used to do the same thing. I've been > assured by others with teenage boys that this inattention to hygiene > is not all that uncommon at that age. I do not know if this is a > chronic problem with kids who have Asperger's (an inattention to > hygiene), but it seems to me with mine that once something becomes > indoctrinated as part of a routine, they will do it. It just takes > awhile and a lot of reminders to get to the point where it becomes > routine. I also made lists of the things we have to do, in order, > before we can leave the house for school, and for them it has to be > very detailed (or they say " When am I supposed to do this... " ) So > it's like, " Get up, turn off the alarm clock. Use the toilet if > needed, flush. Put on clean underwear. Get dressed. Go downstairs and > eat breakfast. Go upstairs and wash your face and brush your teeth. > Put shoes on. Put lunchbag in backpack. " etc. > > Because they are young, we had a reward system and I made a gameboard > with prize spaces along the way and a big prize at the finish. If > they did all these things on the list in time to leave and get to > school on time, they got to move one space. It saved a lot of stress, > for us, although I'm not sure this is anything that would help you. > Eventually these things became incorporated into the routine and they > just do them and we don't need the gameboard anymore. > > Cat > > > > > > > > > > Hi! > > Our names are and Dynes. We live in ton, SC. We > have a > > 13 year old son diagnosed with PDD and SID when he was 3 years old. > He was > > later also diagnosed with CAPD. He had PT, OT, speech therapy, and > resource > > assistance through the school system and MUSC Developmental > Pediatrics from > > age 3-7. After that he was discharged from further treatment or > assistance > > because for some reason he didn't qualify anymore. We withdrew him > from > > public schools after 4th grade because he was constantly bullied. > He is now > > in Catholic school and is doing great academically. In some areas > (math, > > science, and reading) he performs at such high levels it is > astounding. He > > tends to focus on math and science to such a degree that he applies > all his > > free time toward it (to the point of obsession) and talks of little > else. In > > conversation he tends to focus solely on his interests. He mainly > only talks > > to me and if he wants to communicate something with someone else he > will > > usually do it through me, not making eye contact with others, > because it > > seems to be uncomfortable for him. He has some difficulty reading > social > > cues from others, or showing interest in activities outside his own > areas. > > He continues to struggle socially, but at least he is no longer > bullied. He > > wants to have friends but other children find him " quirky " and tend > to avoid > > him. He seems younger and less worldly than his peer group. He has > no > > athletic interests which is a big deal to other children his age. > His > > muscles have always been underdeveloped so he never did well in > sports. We > > have kept him in martial arts to improve his strength and > flexibility while > > at the same time not placing him in a competitive environment as is > common > > in team sports. has always depended on me for everything > from laying > > out his clothes each day to fixing his snacks and keeping him > organized at > > home and at school. He also spends all his free time with me, > telling me > > about science and mathematical concepts that I don't understand but > try to > > take a great interest in. I have been overprotective and sheltered > him > > because I didn't want to see him hurt in anyway. Last summer he > went to a > > Christian camp in NC for 5 weeks with a friend. I worried the whole > time. He > > had fun and did great without me, even though he hardly used any > shampoo, > > toothpaste, soap, or deodorant so I'm pretty sure the counselors > didn't make > > sure he ever stayed clean. > > We are very concerned about how the changes of adolescence will > affect him > > and how his needs and challenges will be changing. We want him to > have a > > successful high school and college experience but are worried about > the > > socialization aspect in these areas. We are also concerned that he > needs to > > become more responsible for himself and more independent from me. I > am > > afraid is he doesn't become more self sufficient he won't be able > to handle > > living away from us during college. As much as I love all the time > I have > > with I'm worried that I'm holding him back, or that there is > > something I should be doing to help him move on socially. We are so > proud of > > his accomplishments. He has worked so hard to get where he is. We > really > > don't know what comes next or what we should be doing. > > Sorry this is so long. We have never known of any support groups > and are > > really happy to have found one. Until I watched " The View " today on > > television I really didn't know these types of groups existed. I > look > > forward to learning from others and sharing what we have learned > with > > families of younger children. > > Sincerely, > > Dynes > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2007 Report Share Posted February 15, 2007 Hi, Cat (and anybody else who gets this--I just joined and I am not sure whether replying gets me just Cat or everybody!) It sounds like you have your hands full, but are handling the boys very well! My name is Deb and I just joined the group. We live in Mt. Pleasant and my nine-year-old son has Aspergers. He His current obsession: sports statistics! And he will talk and talk and talk...to anyone, anywhere! received social skills help in public school last year, but very little has been done this year. He is very good natured...most of the time. However, I think I need to get some additional help for him in regard to organization and anger management. However, we moved here after his diagnosis, and I'm not sure who to turn to for assistance. Where are your boys being evaluated? Do you know if there is any physician or agency that coordinates services in this area? I would appreciate any direction you (or anyone) can give! Thanx! Peace, Deb -- In , " Cat " <sushicat69@...> wrote: > > Hi and , welcome. My sons (8 and 10) are going through > the evaluation process right now, although everyone involved is > pretty certain they have a spectrum disorder. They tend to have some > of the same characteristics you describe (thought of as quirky or > eccentric, very good with math and science), although their obsession > is computer/video games. They constantly come to me just to talk to > me, on and on, about the same thing. I try to keep savvy on the > subject so I can appear interested, but sometimes I think it would be > really nice if they could just call a friend. One of my sons also > does the 'laugh too loud' thing. > > Anyway, something you said struck me about your son going to camp and > not using much deoderant, shampoo, etc. I have a 15-year-old son > without Asperger's, and he used to do the same thing. I've been > assured by others with teenage boys that this inattention to hygiene > is not all that uncommon at that age. I do not know if this is a > chronic problem with kids who have Asperger's (an inattention to > hygiene), but it seems to me with mine that once something becomes > indoctrinated as part of a routine, they will do it. It just takes > awhile and a lot of reminders to get to the point where it becomes > routine. I also made lists of the things we have to do, in order, > before we can leave the house for school, and for them it has to be > very detailed (or they say " When am I supposed to do this... " ) So > it's like, " Get up, turn off the alarm clock. Use the toilet if > needed, flush. Put on clean underwear. Get dressed. Go downstairs and > eat breakfast. Go upstairs and wash your face and brush your teeth. > Put shoes on. Put lunchbag in backpack. " etc. > > Because they are young, we had a reward system and I made a gameboard > with prize spaces along the way and a big prize at the finish. If > they did all these things on the list in time to leave and get to > school on time, they got to move one space. It saved a lot of stress, > for us, although I'm not sure this is anything that would help you. > Eventually these things became incorporated into the routine and they > just do them and we don't need the gameboard anymore. > > Cat > > > > > > > > > > Hi! > > Our names are and Dynes. We live in ton, SC. We > have a > > 13 year old son diagnosed with PDD and SID when he was 3 years old. > He was > > later also diagnosed with CAPD. He had PT, OT, speech therapy, and > resource > > assistance through the school system and MUSC Developmental > Pediatrics from > > age 3-7. After that he was discharged from further treatment or > assistance > > because for some reason he didn't qualify anymore. We withdrew him > from > > public schools after 4th grade because he was constantly bullied. > He is now > > in Catholic school and is doing great academically. In some areas > (math, > > science, and reading) he performs at such high levels it is > astounding. He > > tends to focus on math and science to such a degree that he applies > all his > > free time toward it (to the point of obsession) and talks of little > else. In > > conversation he tends to focus solely on his interests. He mainly > only talks > > to me and if he wants to communicate something with someone else he > will > > usually do it through me, not making eye contact with others, > because it > > seems to be uncomfortable for him. He has some difficulty reading > social > > cues from others, or showing interest in activities outside his own > areas. > > He continues to struggle socially, but at least he is no longer > bullied. He > > wants to have friends but other children find him " quirky " and tend > to avoid > > him. He seems younger and less worldly than his peer group. He has > no > > athletic interests which is a big deal to other children his age. > His > > muscles have always been underdeveloped so he never did well in > sports. We > > have kept him in martial arts to improve his strength and > flexibility while > > at the same time not placing him in a competitive environment as is > common > > in team sports. has always depended on me for everything > from laying > > out his clothes each day to fixing his snacks and keeping him > organized at > > home and at school. He also spends all his free time with me, > telling me > > about science and mathematical concepts that I don't understand but > try to > > take a great interest in. I have been overprotective and sheltered > him > > because I didn't want to see him hurt in anyway. Last summer he > went to a > > Christian camp in NC for 5 weeks with a friend. I worried the whole > time. He > > had fun and did great without me, even though he hardly used any > shampoo, > > toothpaste, soap, or deodorant so I'm pretty sure the counselors > didn't make > > sure he ever stayed clean. > > We are very concerned about how the changes of adolescence will > affect him > > and how his needs and challenges will be changing. We want him to > have a > > successful high school and college experience but are worried about > the > > socialization aspect in these areas. We are also concerned that he > needs to > > become more responsible for himself and more independent from me. I > am > > afraid is he doesn't become more self sufficient he won't be able > to handle > > living away from us during college. As much as I love all the time > I have > > with I'm worried that I'm holding him back, or that there is > > something I should be doing to help him move on socially. We are so > proud of > > his accomplishments. He has worked so hard to get where he is. We > really > > don't know what comes next or what we should be doing. > > Sorry this is so long. We have never known of any support groups > and are > > really happy to have found one. Until I watched " The View " today on > > television I really didn't know these types of groups existed. I > look > > forward to learning from others and sharing what we have learned > with > > families of younger children. > > Sincerely, > > Dynes > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2007 Report Share Posted February 15, 2007 In a message dated 2/14/2007 7:51:59 A.M. Pacific Standard Time, mchogblue@... writes: Do you know of documented history on the " stress factor " triggering the diease? or causing a " flare up " ? Hi Sherry...if you are looking for good general info on the connection bet ween stress and disease, there is a great book called Why Zebras Don't Get Ulcers. There is a chapter on autoimmune disease that is very helpful, I think. For me, reading the book was enough to force me to change my life...I did some biofeedback work to better manage the physical manifestations of stress, and it has really helped with the PA flares. To my knowledge the book is out of print but you can usually find it used on amazon... A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2007 Report Share Posted February 16, 2007 Angie, We have had some member not band their children. They did some aggressive repositioning while the infant was young and were happy with the results. If you are still unhappy at 17 months then I would run to your nearest Cranial Tech (and I believe there are 3 in the CHicago area). You need to get her there ASAP. They don't usually start the banding process past 18 months. A better place to ask your question would be the older kids pagio board. OlderPlag/ mom to ... na DOC Grad X2 Feb 04 and Kiersten DOC Grad April 06 http://www.thefilyaws.com/plagio/plagio.html > > Hi everyone, My name is Angie and I have a 17 month old daughter, who > at 9 months old was diagnosed with positional plageocephaly. Took her > to Cranialfacial pediatric surgeon, in Chicago. He didn't find it > necessary for her to have a band, and recommended that we not get it. > He informed us that over time her head will round itself out by time > she is 5 yrs old. Since, her 1st examination we have seen him for a > follow-up in November. He stated he was happy with her improvement, > and glad we didn't choose the band. We have to see him again in June. > Anyways, what I am wondering is has anyone on this group site not > done the band? What are your childs results? > Thanks, > Angie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2007 Report Share Posted February 16, 2007 Angie, One more thought. My oldest was remeasured at 2 1/2 (she graduated at 8 1/2 months from doc band #2). She had improved 1 mm. With the bands (4 1/2 months to 8 1/2 months of age) she went from 11 mm to 4 mm and then from 8 1/2 months to 2 1/2 years she went to 3 mm. 1 mm is not a lot of improvement. mom to ... na DOC Grad X2 Feb 04 and Kiersten DOC Grad April 06 http://www.thefilyaws.com/plagio/plagio.html > > > > Hi everyone, My name is Angie and I have a 17 month old daughter, > who > > at 9 months old was diagnosed with positional plageocephaly. Took > her > > to Cranialfacial pediatric surgeon, in Chicago. He didn't find it > > necessary for her to have a band, and recommended that we not get > it. > > He informed us that over time her head will round itself out by > time > > she is 5 yrs old. Since, her 1st examination we have seen him for > a > > follow-up in November. He stated he was happy with her > improvement, > > and glad we didn't choose the band. We have to see him again in > June. > > Anyways, what I am wondering is has anyone on this group site > not > > done the band? What are your childs results? > > Thanks, > > Angie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2007 Report Share Posted February 16, 2007 Hi Angie, welcome to the group. there are definitely moms on the board who have done repositioning to round out their babies head. some have had enought success with this to avoid banding, others banded after repo to get additional correction. other mom's on here are still debating. Do you know how much asymmetry your daughter had when you started? It would be interesting to hear how much progress she's made. -christine mom to sydney/ 13 mo/ starband grad 10-06 > > Hi everyone, My name is Angie and I have a 17 month old daughter, who > at 9 months old was diagnosed with positional plageocephaly. Took her > to Cranialfacial pediatric surgeon, in Chicago. He didn't find it > necessary for her to have a band, and recommended that we not get it. > He informed us that over time her head will round itself out by time > she is 5 yrs old. Since, her 1st examination we have seen him for a > follow-up in November. He stated he was happy with her improvement, > and glad we didn't choose the band. We have to see him again in June. > Anyways, what I am wondering is has anyone on this group site not > done the band? What are your childs results? > Thanks, > Angie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2007 Report Share Posted February 16, 2007 , Thanks for your reply. Doctor never measured her head. I have pictures and family (who knows) say you can tell her head looks alot better. The opposite side of her head (where it slightly buldged out) is slowly coming towards the flattened side. Not to mention, that her hair hides the spot nicely. ) Angie > > > > Hi everyone, My name is Angie and I have a 17 month old daughter, who > > at 9 months old was diagnosed with positional plageocephaly. Took her > > to Cranialfacial pediatric surgeon, in Chicago. He didn't find it > > necessary for her to have a band, and recommended that we not get it. > > He informed us that over time her head will round itself out by time > > she is 5 yrs old. Since, her 1st examination we have seen him for a > > follow-up in November. He stated he was happy with her improvement, > > and glad we didn't choose the band. We have to see him again in June. > > Anyways, what I am wondering is has anyone on this group site not > > done the band? What are your childs results? > > Thanks, > > Angie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2007 Report Share Posted February 17, 2007 Angie - Welcome!!! This is a great group of parents who are all going thru or have been thru this whole journey! As was already posted look into the older plagio site - they will have some advise I'm sure. Do you have a Cranial Tech near you? Give them a call and see about getting an eval - they can give you measurments and severity if you want to know that info - they can also let you know if a band would help! HTH! Jen and LuliLeft Tort - Right Plagio - Hanger Band Grad - CATallulah Jayne - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 Hi--Do you have funds to see a physician who is trained and certified as an ND--natropathic physician? Do you have the support and funds to see a doctor that isn't on the National Health? Are there any adults helping you or people you could go to that would help you search for help? Good luck! You need support, ew >Hi everyone, > >I'm 15 years old from the uk, and suffered from RA since many years >now, I have been in hospitals several times without any improvement of > >Since none of my doctors really seem to care is there anything I can do? > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 Kim, I'm an SLP and it sounds to me like your dtr is very appropriate for ST right now. If she is gesturing appropriately, they could begin by teaching signs. That would greatly decrease your frustration. They could also begin attempting to elicit verbal imitations. It's possible she would attempt more imitations with someone other than you. (Children are more stubborn with mommy!) If you can, I would look into pursuing ST. Especially since she still has a yr to be covered by EI. Pam On 2/23/07, Kim <wilson.clan@...> wrote: > > I am new here also, found out about this group from a speech forum. My > toddler n will be 2 next Friday and has been receiving EIP > therapy since late November for SPD and global developmental delays. > It started as her ped asking me to consider speech therapy at her 18 > month check-up. Two months later we decided to call. > > No speech therapy is possible for her until she learns and understands > the concept of imitative play. A dev/ped ruled out autism at this time > (at 22 months) due to her social interactions, with a follow-up in July. > > I never heard of apraxia until I googled speech disorders early this > week and a bunch of stuff on aphasia and apraxia came up. Never > realized it was so complicated. n speaks no words, but she has > sounds that she uses for some things ... however, sounds like " se se " > can mean a few different things. She garbles consonants sometimes when > she's upset or angry. She " jargons " and tells " stories " that make her > laugh, and we try to respond in kind to her. She started in the fall > with " mamamamamama " , but that disappeared again. She points, gestures, > or will hand you a cup, a shoe, a remote, if she wants something. > Often we don't know what she wants, and then things get very rough and > frustrating. > > She'll be working with a new OT next week (I canceled the first one, > it wasn't a good match), and she works with Special Instruction and > Physical Therapy to build strength and coordination in fine and gross > motor skills. She has attention span issues as well. > > The only " diagnosis " we have so far is SPD with global developmental > delays. We also have an 8 year old in 2nd grade in Catholic school, > she also has sensory-seeking issues, but she is not delayed (actually > rather gifted), and I'm trying hard not to let her be the 'forgotten > child' in the chaos that is her little sister's life sometimes (n > is intensely sensory-seeking and has entered the " terrible two's " also). > > There's more to all of this, of course, but I've rambled enough. I've > gotten to look at a few links and files, but I don't have much online > time these days with n's challenges. > > regards, > Kim (34) > mom to n (2) and (8) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2007 Report Share Posted March 6, 2007 Jocee, Medicine is still more an art than a science. My dh is writing a book on this subject, how manufacturing has crossed the threshold from art to science, but medicine really hasn't. There really isn't one specific test for AS. Or at least not that I know of. Dysthymia is a low-grade depression. Welcome to the group. You can ask anything at all - chances are somebody has been through it! Liz On Mar 6, 2007, at 9:33 AM, Jocee wrote: > Hello everyone from Idaho. My name is Jocee and I received the > results of my 11 year old son's Pediatric Development Evaluation in > the mail yesterday. > > Diagnostic Imperssions (DSM-IV) > > Axis 1: Asperger's Disorder > Generalized Anxiety Disorder > Dysthymia (whatever that is) > ADHD, Primarily Inattentive Type > Axis 2: Deferred (academic problems noted) > Axis 3: Deferred to Physician (none noted) > > Recomendations: > > 1. Individual therapy. (For depression and anxiety.) > > 2. Social skills training. Preferrably through school. (That's a > laugh!) > > 3. Family therapy to address parenting skills and behavioral > management strategies for the parents. > > 4. Medication management for addressing significant symptoms of > innattention, anxiety, and depression may also be warranted. > However, such a decision is deferred to his peditrician. > > I guess my first question is > > Is a Pediatric Developmental Evaluation an accepted way to diagnose > AS? I mean the whole diagnosis was based on talking to my husband, > my Mother-in-law and myself, ranking my son's behavior on a scale > of " never, seldom, often and always " on one test, then doing a > similar test jointly, the Dr. talking to my son and having him > complete sentences, the Dr. reviewing his IEP meeting notes and the > teacher doing a behavior ranking on him as well. > > It just seems to me to have been done so quickly. > > Cody, my son has trouble pronouncing his words correctly. He talks > through his teeth and talks fast. Sometimes he leaves words out of > his sentences. (I think it's because his mind moves faster than his > mouth.) > > He says he doesn't have any friends. (Although I've talked to some > other kids and they say they like Cody though he never seems to want > to play/hang out with them.) I think it's because he wants to run > the show and when they want to do something different he takes it as > rejection. I really worry about this area the most affecting his > depression. > > His main interests are Legos (he builds 3000 pieces and up Star Wars > sets in about 8 hrs), Yu-Gi-Oh (noticed that one of you have a 14 > yr. old that really likes this too), PS2 games, and movies. > > Cody resists trying new things and can get so worked up that he has > vommited a few times in the past. He is very fearful of failing. To > the point where he doesn't really try because he can't be the best > or get a 100%. This concerns me too because he's missing out on > having some really joyful experiences. In this area I can see > myself. Though I thought my fears are a result of an unhappy > childhood. (Maybe I should get tested.) > > My son is very tender-hearted. He loves to hug and kiss. To the > point where he can sometimes make you feel smothered. And he is very > empathetic. In the last 2 years he lost his Granny (my Mother) and > his GG (Great-Grandma on my husband's side) and will sometimes cry > about this saying that he misses them. (This is also one of my > traits although I am usually ornery and outgoing. When Sept. 11th > happened I sat and watched TV and cried for 3 days straight thinking > about the victims and thier families and then cried off and on for 2 > weeks after.) > > All in all I know that Cody probably does have AS, but I'm unsure to > what degree. I wonder quite often if he really does feel as strongly > as he says about fear and failure and being alone, or if he's trying > to get sympathy or trying to manipulte others into doing things for > him. Does that make me a bad mom? > > Again, is there another specific test we should do or should we > simply start with the recommendations and go from there? I trust you > all more than the doctors because of my dealings with doctors that > treated my Mother for Fibromuscular Dysplasia. (They don't know half > of what they think they do.) > > Thank you in advance for your responses. I'm glad you are here. > > Jocee > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2007 Report Share Posted March 6, 2007 Hi Jocee, I'm a single mom, 3 sons, one with Aspergers/OCD/dysgraphia diagnoses. (dysgraphia is for his writing, better now but pretty illegible at time of diagnosis) He's 18 now. I think with diagnosing Aspergers/autism, that many times the evaluators only have to go on what parents/family give as history and present and then their observations, interactions with the person. Your's sounds similar to my son's evaluation. He was beginning 8th grade when I got him evaluated. I had always suspected " Aspergers " but thought maybe he didn't have enough traits. It was sort of hard to answer some questions, in that some things applied a lot when he was " younger " but not so much at the time of 8th grade (i.e., he'd improved in areas). The evaluation did go pretty quick for us too, I know others have mentioned spending longer times during one. They went by what I wrote on all those papers they gave me, by spending a little time with my son and then also talking to me & his older brother while there. No, you're not a bad mom for wondering if he might be manipulative at times. We parents have to wonder that about any of our kids, Aspergers or not, LOL! My Aspie is my nicest son in personality and I wondered that about him at one time, sort of a " is he being lazy and taking advantage of me... " thing. Well, errands to run! My son is going through a bit of depression too (his OCD is bothering him too) and it's so sad to see our kids depressed! and anxious! Welcome! > > Hello everyone from Idaho. My name is Jocee and I received the > results of my 11 year old son's Pediatric Development Evaluation in > the mail yesterday. > > Diagnostic Imperssions (DSM-IV) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2007 Report Share Posted March 6, 2007 Usually AS is diagnosed by a developmental pediatrician or neuropsychologist/psychologist. Most pediatricians would recommend a referral from an " expert " in diagnosing young children on the autism spectrum. Also, anxiety and depression are part of the AS presentation, so they would be considered in the severe range to warrant their own diagnoses. By the way, you are a good mom...I know I second guess all the time. Pam <BR><BR><BR>**************************************<BR> AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2007 Report Share Posted March 7, 2007 Welcome Marcy.. You are amongst friends. You will find many support systems here Hon I am Chris.. Mom to Chase and he has autism . I have several more children who are NT which means Neurotypical.. AKA NORMAL LOL you will have lots of questions about some of the phrases we use around here... DON'T hesitate to ask questions.. Even if they seem silly Because there are no silly questions.. Only the ones you don't ask.. Because you are afraid to look silly. Welcome again Hon for awesome autism gear look HERE! http://www.cafepress.com/autismawarenes For Fun Fashion gear look HERE! http://www.cafepress.com/stronggear For Fun Animal Activist Gear go HERE! http://www.cafepress.com/vegetarianrus and don't forget Ribbons of hope! Show your support and show your ribbon. http://www.cafepress.com/ribbonsofhope -- ( ) New Member Hi. I am a new member to this. I was actually introduced to this by another parent here in Illinois to help me out. My name is Marcy. I am 29yrs with two boys. My oldest is 8 and his name is and my youngest is 6 and his name is . just recently got diagnosis with AS and to be honest with you all. Most days it is very hard for me because i have never been around kids with AS. I dont have anyone to talk to because none of either family has any kids with the problems that I do. Thanks, Marcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2007 Report Share Posted March 7, 2007 Im having a really hard time right now with the schools and everything. I am so ready to pull my hair out with my two boys. > > Welcome Marcy.. You are amongst friends. You will find many support systems > here Hon > I am Chris.. Mom to Chase and he has autism . I have several more children > who are NT which means Neurotypical.. AKA NORMAL LOL you will have lots > of questions about some of the phrases we use around here... DON'T hesitate > to ask questions.. Even if they seem silly > Because there are no silly questions.. Only the ones you don't ask.. Because > you are afraid to look silly. > Welcome again Hon > > > for awesome autism gear look HERE! > http://www.cafepress.com/autismawarenes > For Fun Fashion gear look HERE! > http://www.cafepress.com/stronggear > > For Fun Animal Activist Gear go HERE! > http://www.cafepress.com/vegetarianrus > and don't forget Ribbons of hope! Show your support > and show your ribbon. > http://www.cafepress.com/ribbonsofhope > -- ( ) New Member > > Hi. I am a new member to this. I was actually introduced to this by > another parent here in Illinois to help me out. My name is Marcy. I > am 29yrs with two boys. My oldest is 8 and his name is and my > youngest is 6 and his name is . just recently got > diagnosis with AS and to be honest with you all. Most days it is very > hard for me because i have never been around kids with AS. I dont have > anyone to talk to because none of either family has any kids with the > problems that I do. > > Thanks, > > Marcy > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2007 Report Share Posted March 8, 2007 I feel for you, Marcy. I absolutely *hate* dealing with the schools. I am SO glad it's all almost over for the summer. -Jenn Proud Momma of Cory Albert (14yrs ADHD), h Dawn (12yrs Anxiety) and Jerry Lee " Trey " (9yrs ADHD, Bi-Polar, Asperger's) -- ( ) New Member > > Hi. I am a new member to this. I was actually introduced to this by > another parent here in Illinois to help me out. My name is Marcy. I > am 29yrs with two boys. My oldest is 8 and his name is and my > youngest is 6 and his name is . just recently got > diagnosis with AS and to be honest with you all. Most days it is very > hard for me because i have never been around kids with AS. I dont have > anyone to talk to because none of either family has any kids with the > problems that I do. > > Thanks, > > Marcy > > > > > > Quote Link to comment Share on other sites More sharing options...
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