Guest guest Posted October 23, 2003 Report Share Posted October 23, 2003 What about swimming? new member I have severe knee pain all of the time, and am trying to find something that I can do for excersize that wont hurt. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2003 Report Share Posted October 24, 2003 Do you have a YW or YMCA? They usually have day care. new member > > > I have severe knee pain all of the time, and am trying to find something > that I can do for excersize that wont hurt. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2003 Report Share Posted November 16, 2003 In a message dated 11/16/2003 11:50:54 AM Eastern Standard Time, buttercreams@... writes: > Has anyone else had this > happen, or how do you know when it is so bad, that a sore could > become gangrenous? I was so upset, during the night before we saw the > doctor, but feel better since. But, still I wondered if this is very > common? > Hi Glad your hubby's foot is improving. Anytime there is a sore, the doctor should see it immediately. Eunice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 I'm in Mass. but I had a vestibulectomy in July 2003. I am still at the beginning stages on working on re-establishing sexual relations after surgery, but PT has been the most helpful for me. Fortunately, I have an amazing physical therapist who has really helped me through everything. I am still going to PT and have just started attempting intercourse again. It is still very mechanical and somewhat uncomfortable, but according to her it gets better with time, patience and practice. I would recommend finding a physical therapist with expertise in this field if you don't yet have one. Just going from having surgery to attempting intercourse is not recommended by most doctors. Physical therapy is really the key to getting your body ready for it. Hope this helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Serch the web for doctors that specialize in vulvar pain/vulvar disorders and get a appointment with one. Regular GYN's don't have a clue how to treat VV, they only guess on how to treat. I'm currently seeing Dr. on/Milwaukee, WI. She includes partners in her treatment plan, and does a lot of teaching on the subject, and is concerned about relationships. My husband was in the exam room, she handed me a mirror, had him sit real close, made him hold my hand, and showed both of us the inflamed glands. Do whatever it takes to fight the depression. I went to my family practice MD for the depression. I wasn't comfortable taking anti-depressents because I felt anxiety triggered the depression , so I take Lorazepam for anxiety. Some days are easier to cope with, so when I'm having really bad coping days, I will take a Lorazepam. One way to fight depression is to make sure you eat a well balanced diet. If you are able to walk, early morning sun is good for fighting depression. Good luck to you, I hope you find proper treatment soon, and I hope your relationship can withstand this battle. My husband said that he can cope with the VV, but it's really hard for him to cope when I'm depressed. Best wishes. > Hello, > > My name is Jane and I have been suffering from vulvar vestibulitis > for three years now and been to many doctors and tried many > treatments, none have worked. Up to this point I have not had any > real support because I didn't want to tell anyone and have begun to > feel increasing hopeless about the whole thing. My biggest concern > right now is that my relationship is suffering because I can't seem > to cope in a constructive manner and have been getting depressed > lately. My boyfriend has no idea what to do to help me and we have > started to grow apart. I don't know what to do. I feel > abandoned > by the medical establishment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Dear Jane, Hi!!!!! My name is and im 19, ive been suffering from Vestibulitis since I was about 12. There ARE people (women more likely, guys get life easy in this department grr) who are like you and are going through it too. I personally dont know how i got passed 5 years of not being diagnosed * i was actually diagnosed at 17 by a doctor in Standford Clinic in california. What they put me on was Elavil, which i hated!!!!! the symptoms were worse then what it was for sometimes. being constantly tired and etc. I recommend putting a heating pad between your legs when you have flare ups *or when its the most irritated* I do it everynight to keep myself from waking up from the pain. Some people prefer the cold packs but I have had good nights cause of the heating pad. I am also in this process of using dialator things to help stretch out the opening of the vagina. Because you dont want to be stuck with stiff and tense areas where the vestibulitis decided to make home on you. I had a part taken out while i was having a laparascopy for endometriosis *endo was ruled out tho but they went ahead and took a spot of vestibulitis out of the 6 olcock area. Remember I had to basically tell the doctor I felt like I was going to go crazy, make sure they wont mistake you for crazy though cause some doctors just throw meds at you hoping it will help but you really need to sit them down, look straight into their eyes and say, " are you REALLY going to help me, if you cant, find me someone who will. " I had to say that to one of my doctors and she finally introduced me to several other options, maybe im just getting the bad doc vibe. What is sad is that until the doctors get a wife who has this, their wont be much to learn about it. Which angers me but that is another story!! here is what works for me- - Heating pad whenever you can - dialators - try to have a good attitude about it, if it starts to flare up try to make a joke. " Oh boy, today is the day! " or " Here it comes again! " :dodge: -be VERY open with your partner, im very lucky to have a bf who tries to understand, ive caught him looking at doctor books for women hahaha, they might be just as frustrated as you are cause they care enough. maybe ask for a back rub or have them get the things you need. I know if im having a flare up the last thing i want is to be running around the house. -try yoga to release the muscles -kegel excersizes (urinate then stop it, then release, then stop *on the toilet silly!* it creates those pelvic muscles to work and become stronger. -low oxalate diet....i havent really had any thoughts to it cause nothing can prevent my flare ups, it just depends how painful this flare up is. -remember that if you lived through it for as long as you have you can live on to maybe see the cure for it. be positive, i know its hard!!!! but its testing you aint it! -drink lots of water to get your urine crystals to the smallest size, making it burn less during urinating. or use the water bottle technique i love. (have on handy in your bathroom for convinance, you KNOW there will be those times when you just need to jump into the bathroom haha. -watch your favorite soap operas....or anything youd like to get your mind off of your body. - I have realized that if i treat it like its going to be there for a little while (the flare ups i mean) they dont seem to bother me as much. - intercouse....is a hard subject for most ladies who have this. remember be very open to your partner, be open to anyone who will listen really! if you can take little penetration just tell your partner. tell them what hurts and what doesnt. i have a doc appointment matter of fact so i have to cut this short i hope this helps!!!!!! _ > >Reply-To: VulvarDisorders >To: VulvarDisorders >Subject: new member >Date: Mon, 26 Apr 2004 13:04:39 -0000 > >Hello, > >My name is Jane and I have been suffering from vulvar vestibulitis >for three years now and been to many doctors and tried many >treatments, none have worked. Up to this point I have not had any >real support because I didn't want to tell anyone and have begun to >feel increasing hopeless about the whole thing. My biggest concern >right now is that my relationship is suffering because I can't seem >to cope in a constructive manner and have been getting depressed >lately. My boyfriend has no idea what to do to help me and we have >started to grow apart. I don't know what to do. I feel >abandoned >by the medical establishment. > > > _________________________________________________________________ FREE pop-up blocking with the new MSN Toolbar – get it now! http://toolbar.msn.com/go/onm00200415ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Hi Jane At least you've found this group and there's lots and lots of support to be got here. I'm very fortunte to have a loving husband but we've been through some real lows since this all started for me 9 years ago. My advice would be to try and talk about it and tell him as much about how it feels and affects you as you feel you can. I know my husband thought I'd gone off him/was having an affair for ages! Is there anyone else close you can talk to? I'm sure other people will offer advice whenever you need it so just ask away. Maybe post up the things you've tried so people can make other suggestions? Many women do get relief so don't ever feel there's no hope. It's taken me a long to find out what works for me but I think I'm finally getting there! Everyone's different even when the symptoms are the same. Most of us have been let down by doctors but there are some that know what they're doing - post up where you are as people by be able to suggest good ones near you. I'm sure it won't always be this bad. Niki x >My name is Jane and I have been suffering from vulvar vestibulitis >for three years now and been to many doctors and tried many >treatments, none have worked. Up to this point I have not had any >real support because I didn't want to tell anyone and have begun to >feel increasing hopeless about the whole thing. My biggest concern >right now is that my relationship is suffering because I can't seem >to cope in a constructive manner and have been getting depressed >lately. My boyfriend has no idea what to do to help me and we have >started to grow apart. I don't know what to do. I feel >abandoned >by the medical establishment. _________________________________________________________________ Use MSN Messenger to send music and pics to your friends http://www.msn.co.uk/messenger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Jane, Please hang in there! I know how you feel. I have been dealing with vestibulitis my whole life (I'm 27) and have at many times been very depressed. I tried various treatments over the years, including medication, estrace, lidocaine, and physical therapy, but nothing worked. It wasn't until I had surgery (a vestibulectomy) in July of 2003 that I found any relief. However, this should be a last resort. I have been going to physical therapy again and this has made a huge difference (along with the surgery). I am about 90% better as a result. Are you seeing a vulvar specialist? If not, you need to see one. What area of the country do you live in? Please don't give up...there is hope! Feel free to email me anytime time on or off the list. rtwall15@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2004 Report Share Posted May 2, 2004 I live in arkansas, where is the closest place around me? Help! > >Reply-To: VulvarDisorders >To: <VulvarDisorders > >Subject: RE: new member >Date: Tue, 27 Apr 2004 19:48:47 -0400 > >Jane, > >Please hang in there! I know how you feel. I have been dealing with >vestibulitis my whole life (I'm 27) and have at many times been very >depressed. I tried various treatments over the years, including >medication, estrace, lidocaine, and physical therapy, but nothing >worked. It wasn't until I had surgery (a vestibulectomy) in July of >2003 that I found any relief. However, this should be a last resort. I >have been going to physical therapy again and this has made a huge >difference (along with the surgery). I am about 90% better as a result. >Are you seeing a vulvar specialist? If not, you need to see one. What >area of the country do you live in? Please don't give up...there is >hope! Feel free to email me anytime time on or off the list. >rtwall15@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Hi , Sorry your here! Have you heard of the Low Oxolate diet?? This has helped me along with taking Calium Citrate (a vitamin). I also get flare-ups if I eat anything acidic like Tomatoes,Orange Juice, coffee etc...I think there are posts in the archives about the diet. Have you tried a P.T. If you get pregnant it would be good to get your pelvic floor muscles to relax for an easier delivery. Of course this is not medical advise, just what has worked for me and others in my support group. Sue P.S. I also underwent infertility treatments to get pregnant. New Member >Hi My name is and I have had Vulvar Vestibulitis for three >years. The first year was the worst constant flare ups. Somehow it >miraculously died down over the past couple of years. I really >haven't been treated with anything b/c I have been going through >infertility treatments all this time. I have used A & D ointment, >atarax on occassion, soaked in baking soda but nothing major to take >away the pain. I recently m/c(march), up until this point I was >feeling ok. Like I said things had gotten better. I am currently >suffering through the most horrible flare up and do not know where >else to turn. I thought someone here may be able to offer a >suggesstion. I have gone to the Dr. and he prescribed estrace cream >which did not work, then he prescribed vagifem tablets that isn't >helping. I am soaking in warm water, using tucks pads after I >urinate putting on A & D and nothing is helping.... I am really at a >loss. I am so upeset that this disease has come back. I live in NY >close to NYC so if anyone can reccomend a doctor I would be >extremely greatful. If I can't get this under control I won't be >able to continue my infertility treatments. Any help would be >appreciated. > >Thanks > > > > > >*****END OF MESSAGE/REMOVE WHEN REPLYING***** >--------------------------------------------Yahoo members can go to: >http://groups.yahoo.com/group/VulvarDisorders >to search our archive or view our files. > >*** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Hi Sue Thanks for getting back to me... I was just reading about the low oxolate diet last night. I am definitely going to try it along with the calcium citrate. At this point it can't hurt. I would love to go to a P.T. but I am not sure where I would find one that speacializes in VV. Do you have any suggesstions on how I would find one in my area? Thanks -- In VulvarDisorders , " suebee " <ballards4@e...> wrote: > Hi , Sorry your here! Have you heard of the Low Oxolate diet?? This > has helped me along with taking Calium Citrate (a vitamin). I also get > flare-ups if I eat anything acidic like Tomatoes,Orange Juice, coffee > etc...I think there are posts in the archives about the diet. Have you > tried a P.T. If you get pregnant it would be good to get your pelvic floor > muscles to relax for an easier delivery. Of course this is not medical > advise, just what has worked for me and others in my support group. Sue > P.S. I also underwent infertility treatments to get pregnant. > New Member > > > >Hi My name is and I have had Vulvar Vestibulitis for three > >years. The first year was the worst constant flare ups. Somehow it > >miraculously died down over the past couple of years. I really > >haven't been treated with anything b/c I have been going through > >infertility treatments all this time. I have used A & D ointment, > >atarax on occassion, soaked in baking soda but nothing major to take > >away the pain. I recently m/c(march), up until this point I was > >feeling ok. Like I said things had gotten better. I am currently > >suffering through the most horrible flare up and do not know where > >else to turn. I thought someone here may be able to offer a > >suggesstion. I have gone to the Dr. and he prescribed estrace cream > >which did not work, then he prescribed vagifem tablets that isn't > >helping. I am soaking in warm water, using tucks pads after I > >urinate putting on A & D and nothing is helping.... I am really at a > >loss. I am so upeset that this disease has come back. I live in NY > >close to NYC so if anyone can reccomend a doctor I would be > >extremely greatful. If I can't get this under control I won't be > >able to continue my infertility treatments. Any help would be > >appreciated. > > > >Thanks > > > > > > > > > > > >*****END OF MESSAGE/REMOVE WHEN REPLYING***** > >--------------------------------------------Yahoo members can go to: > >http://groups.yahoo.com/group/VulvarDisorders > >to search our archive or view our files. > > > >*** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 I'm afraid that tux pads may well contribute to your problem, they did to mine. The chemicals in them can be very irritating to vulvar skin. If you feel the need to get as much urine off your skin as possible and just plain toilet paper isn't doing that for you, buy a small squirt bottle to keep in your purse and keep it filled with water to squirt the area clean. Why are u using A & D? Is your skin dry? Or is it that you use it to try and help the inflammation? If for inflammation , try instead Calendula Ointment - which can be purchased at your local health food store or on the internet. Also try Balmex. How long did you try the estrogen cream? It takes months to see a difference, not just days. The same is true of the Vagifem. Did you give them enough time? Dusty New Member Hi My name is and I have had Vulvar Vestibulitis for three years. The first year was the worst constant flare ups. Somehow it miraculously died down over the past couple of years. I really haven't been treated with anything b/c I have been going through infertility treatments all this time. I have used A & D ointment, atarax on occassion, soaked in baking soda but nothing major to take away the pain. I recently m/c(march), up until this point I was feeling ok. Like I said things had gotten better. I am currently suffering through the most horrible flare up and do not know where else to turn. I thought someone here may be able to offer a suggesstion. I have gone to the Dr. and he prescribed estrace cream which did not work, then he prescribed vagifem tablets that isn't helping. I am soaking in warm water, using tucks pads after I urinate putting on A & D and nothing is helping.... I am really at a loss. I am so upeset that this disease has come back. I live in NY close to NYC so if anyone can reccomend a doctor I would be extremely greatful. If I can't get this under control I won't be able to continue my infertility treatments. Any help would be appreciated. Thanks *****END OF MESSAGE/REMOVE WHEN REPLYING***** --------------------------------------------Yahoo members can go to: http://groups.yahoo.com/group/VulvarDisorders to search our archive or view our files. *** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 In a message dated 6/2/04 3:06:13 PM, VulvarDisorders writes: << Hi My name is and I have had Vulvar Vestibulitis for three years. The first year was the worst constant flare ups. Somehow it miraculously died down over the past couple of years. I really haven't been treated with anything b/c I have been going through infertility treatments all this time. I have used A & D ointment, atarax on occassion, soaked in baking soda but nothing major to take away the pain. I recently m/c(march), up until this point I was feeling ok. Like I said things had gotten better. I am currently suffering through the most horrible flare up and do not know where else to turn. >> Hi , Since you're trying to get pregnant, I'm going to assume you don't want to try Elavil or Neurontin. Although, Elavil can be compounded into a cream - which you could stop using if you become pregnant without having to worry about withdrawal if you decide it's incompatible with pregnancy. It looks like estrogen is not a remedy for you since estrace and vagifem have done nothing. You might want to try the Lidocaine Cotton Ball Treatment, it's helping several women with vvs. You can find information about it in the archives of this list and the vulvodynia list. All you need is a cotton ball and 5% Lidocaine ointment. You smear it on the cotton ball and nestle it in your vestibule/vaginal entrance while you sleep. You might also get relief from anti-inflammatories. The Lidocaine Cotton Ball Treatment works on inflammation too for some women. Vioxx has helped some women. It put me in a semi-remission for a couple of years. I now use Atropine cream - you can find information about that in the archives too. Some women like Elidel cream. Some women find aloe, Bag Balm or Vitamin E oil is soothing during a flare. I've found none of them have helped me. <<I live in NY close to NYC so if anyone can reccomend a doctor I would be extremely greatful. >> I've read very few complaints about Rodke. If you're considering Goldstein, read the Vulvodynia list's archives about him before making a decision. You can find the Vulvodynia list archives at: http://www.yahoogroups.com/group/vulvodynia Debbie Tiger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2005 Report Share Posted November 14, 2005 I DON'T THINK THIS IS THE PLACE FOR ME. I WOULD LIKE TO LEAVE THE GROUP. --...GOD WILL CONQUER ALL...IF WE ALLOW HIM TO... -------------- Forwarded Message: -------------- From: DOVE13@... To: Fibromyalgia_Support_Group Subject: New Member Date: Sun, 06 Nov 2005 12:42:56 +0000 i am sorry i haven't sent my personals before. it is hard to function right now. i am 55, one son {35}, three step sons {47,45,33}, 14 grandchildren {i inherited 11 from his sons and my son has 3}, and twin girl great-grands. my husband of 11 years passed june 30 of this year. i have two doggies: snigglefritz and droopy drawers {baby}. .. i live in knoxville, tn. foothills of the great smokey mountains. as you all know it is so frustrating to deal with drs. and medicare. the pain medicare puts us through, just to get the correct treatment", is unreal. i can hardly walk on my right leg because of knee pain. they put a brace on me. helps some. they are giving me a shot each friday afternoon, lordy, lordy, lordy, it hurts. i can't wear the brace because the shot makes my knee so sore for the first three days i can't stand it. duh!!!!!!!!!!!!! i enjoy reading the e-mails you gals send each other. they are so full of compassion, caring and encouragement. anyway, i hope to be an encourager and compassionate listener in your group. dove! ....GOD WILL CONQUER ALL...IF WE ALLOW HIM TO... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2005 Report Share Posted November 14, 2005 sorry that you think that...i hope it was noithing that i did. this group has been my backbone since i joined...they are a great group of people... blessings wen Blessed be to all those who keep us free. -- New Member Date: Sun, 06 Nov 2005 12:42:56 +0000 i am sorry i haven't sent my personals before. it is hard to function right now. i am 55, one son {35}, three step sons {47,45,33}, 14 grandchildren {i inherited 11 from his sons and my son has 3}, and twin girl great-grands. my husband of 11 years passed june 30 of this year. i have two doggies: snigglefritz and droopy drawers {baby}. .. i live in knoxville, tn. foothills of the great smokey mountains. as you all know it is so frustrating to deal with drs. and medicare. the pain medicare puts us through, just to get the correct treatment", is unreal. i can hardly walk on my right leg because of knee pain. they put a brace on me. helps some. they are giving me a shot each friday afternoon, lordy, lordy, lordy, it hurts. i can't wear the brace because the shot makes my knee so sore for the first three days i can't stand it. duh!!!!!!!!!!!!! i enjoy reading the e-mails you gals send each other. they are so full of compassion, caring and encouragement. anyway, i hope to be an encourager and compassionate listener in your group. dove! ....GOD WILL CONQUER ALL...IF WE ALLOW HIM TO... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 I use to live in Gulfport boy do I miss it there. Welcome to the group I am liz 30 married for 13 years with 2 great kids. I know what you mean I have my days too. Today I had to go grocery shopping and thank goodness for my kids or none of the food would have made it in the house and wouldn't have gotten put away. My husband supportive but he travels most of the time for his job so he isn't home much. I broke down and hired a housekeeper. I had too I couldn't keep up with it. Welcome to the group this is a great bunch of people! Liz wrote: Hello! My name is And I'm new to the group. I would just like to tell you all a little something about myself. First of all, I am 44 yr.s old, am a mother of 5 ranging in age from 28yr.s to 7yr.s,4 boys and a girl.I also have a very supportive and loving husband to which I've been married for 16 yr.s.Our 16th. anniversary will be December 30, 2005.I had fibro before I was finally diagnosed in 1995 but didnt know what it was.Today has been a really bad day. I could hardly get out of bed this morning.I live in Mississippi and would like to know if anyone out there knows of a dr. in the Hattiesburg Ms. area that treats fibro. I'm at my wits end to find some relif. Nothing I've tried so far works for long. http://www.surfjunky.com/?r=elizabethmoscowAre you a Surf Junky, it pays to be! http://www.sendmoreinfo.com/ID/2991777 Get Paid to read emails! This is an awesome company! Yahoo! Shopping Find Great Deals on Holiday Gifts at Yahoo! Shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 welcome new member, > > I hope this site will be of use to you. some days I can't > even get on my computer to read these letters people post, but I am > here today. I have a bathtub spa that my boyfriend got me and it helps > take the edge off my pain, enough to sleep at night anyways. Also try > sitting wrapped up in and electric blanket to warm yourself, it might > help, never know. I also put a pad on my bed cause the mattress was > hurting me and well at least it don't hurt as much. As far as meds go > I am sorry to say I have no advice to offer as none ever work for me > either. but I just do as much housework as I can, like 15 minutes at a > time and then take a break and then go back, can't stay on my feet to > long, but at least ya get some done anyways. I hope some of this is > helpful to you. > > > > > > > > > > 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general. > > 2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better. > > 3. To unsubscribe the e-mail is: Fibromyalgia_Support_Group- unsubscribe > > 4. Also, it is not uncommon for more than one member to be feeling bad at the same time when it comes to flares and b/c of that potentially take something another member says the wrong way. And that includes the things that one member may find funny (even if it's laughing at fibro itself) even though we who deal with illness whether one such as fibro or multiple illnesses try to keep a sense of humor. > > 5. Pls let's be gentle with each other, and if you are having a bad day pls let us know so that we can do our best to offer our support. > > Have a nice day everyone. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2006 Report Share Posted May 25, 2006 Hi Lizzy Welcome!!! Not having insurance must be really hard. That is one of the main reasons that I have to keep working. Until I drop!! I'm a little envious though. You use to get up at 6 am and run 10 miles!!! I must tip my hat to you. I use to love my advanced aerobic classes. I went 2 to 3 times a week. Seems like another life time ago. Anyway my name is and I'm 46. I was diagnosed around 17 yrs ago and had it much longer. I am very happily married for almost 28 yrs and we have one wonderful married daughter with 3 children. ages 3 1/2, 2, 3months. Welcome again you will enjoy the whole caring dynamics of this group. There simply great!!! A Canadian Fibro Friend pogosnow_2000 wrote: Hi everyone! I am a new member! I have not been officially diagnosedwith FM and do not have health insurance so I am doing the best I canto sort this out. I do not want to get diagnosed with anything withoutinsurance so I am trying to "deal". I am seeing a homepathic MD whohas helped a lot and I just started acupuncture to help with the sleepissues. With everything I am experiencing I have little doubt FM isthe cause.Oh i miss the days where I would get up and run 10 miles at 6am!!!!But, i am trying to do the best with what i have. the reason I wasmost interested in the group is to get some input, listen to othergroup members experiences, and share some of the things that havehelped me. As many of you may experiece, people don't know how to dealwith this "invisable" illness. My boyfriend is wonderful but I know hegets frustrated with me. Looking foward to chatting with all of you!Cheers,Lizzy All new Yahoo! Mail - Get a sneak peak at messages with a handy reading pane. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Are you being specific about speech or are you possibly referring to langauge? Speech would be for problems with articulation, etc.... Language is related to pragmatics. In the case of language why would you want your child to recieve that in a pull-out setting with just the therapist? The goal is to get the kids talking to others in social situations and acros settings. That is the concept of the group setting. So, essentially yes, other kids are getting it too. But you can request data sheets to determine specifically what your child is receiving. ALL of our kids should be receiving language... This service very often ceases after pre-k but needs to continue throughout elementary and beyond. New member Hello All,I am a new user on s List! I am an ESE teacher of children with autism and I'm excited to gather as much information as possible! Glad to be here! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 I am referring to Speech. He is a three year old soon to be 4. He is a severe autistic child with apraxia. Will probably go into complex place program in August. He has good language skills but extremely poor speech. You can’t adequately address the language without addressing speech. In fact a child with a language deficit will learn language faster if speech is addressed first or at the same time. From: sList [mailto:sList ] On Behalf Of TinaTerriAustin Sent: Friday, June 06, 2008 7:11 AM To: sList Subject: Re: New member Are you being specific about speech or are you possibly referring to langauge? Speech would be for problems with articulation, etc.... Language is related to pragmatics. In the case of language why would you want your child to recieve that in a pull-out setting with just the therapist? The goal is to get the kids talking to others in social situations and acros settings. That is the concept of the group setting. So, essentially yes, other kids are getting it too. But you can request data sheets to determine specifically what your child is receiving. ALL of our kids should be receiving language... This service very often ceases after pre-k but needs to continue throughout elementary and beyond. ----- Original Message ----- From: Heifferon To: sList Sent: Thursday, June 05, 2008 1:11 PM Subject: RE: New member Let me ask you a question about IEP and the so-called cluster approach. I have a difficulty in doing the math. If a child is approved, for example, for special instruction in speech for 30 mins per day, how is he getting his 30mins per session if there are other children in the 30 min class. IEP does not mention class size. And how can they change the class size of that class without getting the approval of the parents of those children because in changing the class size, you change the amount of instruction each child receives. From: sList [mailto:sList ] On Behalf Of Marva Knight Sent: Tuesday, May 20, 2008 1:19 PM To: sList Subject: Re: New member Hello, Yes I am a teacher in Broward,specifically, I am a teacher of students with Autism. This year I am the Autism Coach and Instructional coach for two first year teachers at a new cluster site as well as a writing professor at the local community college a few nights a week. I have to say that the most important role that I have is that I am a mother of a beautiful little boy with Autism. With all the experience that I have received in the classroom and all that trainings that I have attended, the most important and eye opening lessons have been learned at home with my son. ----- Original Message ---- To: sList Sent: Monday, May 19, 2008 4:51:13 AM Subject: Re: New member Welcome Marva! I think it is great a teacher is on this list! New member Hello All, I am a new user on s List! I am an ESE teacher of children with autism and I'm excited to gather as much information as possible! Glad to be here! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 Does the child also receive private Speech services and Occupational Therapy? OT can also improve symptoms of apraxia as apraxia is generally a global issue. Is the child receiving Verbal Behavior services? Have you and other family members been trained in Verbal Behavior? Yes, language and speech are complementary to each other and the learning of each supports the other. His IEP indicates he will receive 30 minutes per week of Speech, correct? And, is it an assumption that this service will occur in the classroom or was that stated in the meeting? Did they provide a reason for why and did anyone ask otherwise? Remember that any service provided to a child in public school is to help them access their academic environment. Any goal written has to have that purpose in mind. If you are not satisfied, call for an interim meeting... I think I understand your concern in that the service is supposed to be for the child, but it is provided in the classroom, therefore the child does not appear to receive all they are entitled to. B/c the therapist can document they provided the service to all of the children and be done for the week, is that correct? New member Hello All,I am a new user on s List! I am an ESE teacher of children with autism and I'm excited to gather as much information as possible! Glad to be here! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 Regarding the “academic environment.” How is that functional as per IDEA? As far as I’m concerned every environment is a teaching opportunity for my son. Does he not need speech/language outside of a classroom setting? From: sList [mailto:sList ] On Behalf Of TinaTerriAustin Sent: Saturday, June 07, 2008 5:40 AM To: sList Subject: Re: New member Does the child also receive private Speech services and Occupational Therapy? OT can also improve symptoms of apraxia as apraxia is generally a global issue. Is the child receiving Verbal Behavior services? Have you and other family members been trained in Verbal Behavior? Yes, language and speech are complementary to each other and the learning of each supports the other. His IEP indicates he will receive 30 minutes per week of Speech, correct? And, is it an assumption that this service will occur in the classroom or was that stated in the meeting? Did they provide a reason for why and did anyone ask otherwise? Remember that any service provided to a child in public school is to help them access their academic environment. Any goal written has to have that purpose in mind. If you are not satisfied, call for an interim meeting... I think I understand your concern in that the service is supposed to be for the child, but it is provided in the classroom, therefore the child does not appear to receive all they are entitled to. B/c the therapist can document they provided the service to all of the children and be done for the week, is that correct? New member Hello All, I am a new user on s List! I am an ESE teacher of children with autism and I'm excited to gather as much information as possible! Glad to be here! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Your 2 cents are welcomed. Nicely said. Unfortunately Broward School District’s position is they do not do any one-on-one. From: sList [mailto:sList ] On Behalf Of M T C Sent: Sunday, June 08, 2008 1:36 PM To: sList Subject: RE: New member If the child cannot learn in a group setting following group instructions and needs more intense he/she should get that. This is why it is called an INDIVIDUAL E P. This more intense type of therapy is especailly important in the early years when they need it most and it has it's greates impact. Eventually the goal should be to get the child to a point where he/she can follow group instruction and be successful. Just my 2 cents. From: Heifferon Subject: RE: New member To: sList Date: Sunday, June 8, 2008, 11:20 AM I don’t mean to belittle the need to educate a parent on how to duplicate the appropriate services he receives from the educational establishment, but the primary responsibilities to educate comes from that establishment. My grandson has always been in a one-on-one setting for all his therapies. He is in the process of developing an IEP. Since the school district does not accept this approach, it is a main contention for his services. This is the main reason we skipped last year when he turned 3. Of course the school district had the option to continue his IFSP, but they will and not do it. I understand that this is there option. But for a parent it is difficult to understand the difference between 35 months and 36 months. It is as if something magical should have happened when he entered part B. We are no longer in a “medical” model; we enter the educational model, as if one is exclusive of the other. I view the whole situation as a struggle between individual, unique needs of the child and what the school district is willing to do. If the child will not respond to a group instruction what is the alternative? I understand the need for a group environment but his priority should be academic first and foremost. One of the areas that is ignored completely is the social problem. The problem requires a different and proactive approach. Instead of placing the disabled child in an environment with typical children, it should be reversed. We have situations where advanced readers are helping out other children who have reading problems. There should be situations where typical children are placed in the environment of disabled children. It would make for a good educational experience for typical children! It’s just a thought. From: sList@ yahoogroups. com [mailto:sList @yahoogroups. com] On Behalf Of Patti O'Meara Sent: Saturday, June 07, 2008 8:53 PM To: sList@ yahoogroups. com Subject: RE: New member Your daughter should not be the primary teacher for her children. As you stated, yes, there should be qualified therapists working with your grandson to address his needs. In addition to that, we have here in NY required by law for a child diagnosed with autism “parent training.” This service is provided by a qualified therapist who works with the parents/caregivers/ siblings to help in generalizing the skills already taught to the student. Is your grandson always in a group setting for speech? Does he receive speech on an individual basis also? From: sList@ yahoogroups. com [mailto:sList @yahoogroups. com] On Behalf Of Heifferon Sent: Saturday, June 07, 2008 5:42 PM To: sList@ yahoogroups. com Subject: RE: New member From: sList@ yahoogroups. com [mailto:sList @yahoogroups. com] On Behalf Of TinaTerriAustin Sent: Saturday, June 07, 2008 5:40 AM To: sList@ yahoogroups. com Subject: Re: New member Does the child also receive private Speech services and Occupational Therapy? OT can also improve symptoms of apraxia as apraxia is generally a global issue. Is the child receiving Verbal Behavior services? Have you and other family members been trained in Verbal Behavior? ANSWER: He presently receives SP, OT and ABA-DT. Daughter decided last year not to put him in a group setting because he wouldn’t learn in this type of setting. The school district’s approach is to have him learn in a group setting first. After all, every other disabled child learns in a group setting, why not autism? I call the answer the “shoe fits all syndrome” vs. the “Unique needs” requirement. For my grandson, the apraxia is more disabling than the autism. My daughter works with his son whenever she has the time. You have to realize she works fulltime and is raising another child, as well. I feel the therapy is better performed by someone already trained/educated and qualified in the needed area. Parents have the potential of becoming excellent therapists but also have the potential of becoming very poor therapists. In any case a school district wouldn’t hire a home trained parent to be a therapist because they don’t meet the qualifications. Yes, language and speech are complementary to each other and the learning of each supports the other. His IEP indicates he will receive 30 minutes per week of Speech, correct? And, is it an assumption that this service will occur in the classroom or was that stated in the meeting? Did they provide a reason for why and did anyone ask otherwise? Remember that any service provided to a child in public school is to help them access their academic environment. Any goal written has to have that purpose in mind. Answer: Actually I’m referring to another situation as well where the child is in a Place Program. His sessions are 30 minutes per session and that is how his IEP reads. But he is in a special class with 6 other children. I’m having problems with the math. If you are not satisfied, call for an interim meeting... I think I understand your concern in that the service is supposed to be for the child, but it is provided in the classroom, therefore the child does not appear to receive all they are entitled to. B/c the therapist can document they provided the service to all of the children and be done for the week, is that correct? Answer: I want to ensure if the child is granted 30 minutes per day , he himself receives it. New member Hello All, I am a new user on s List! I am an ESE teacher of children with autism and I'm excited to gather as much information as possible! Glad to be here! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 I can’t help but ask…do they say why? If it’s appropriate they must provide it as per the law. From: sList [mailto:sList ] On Behalf Of Heifferon Sent: Sunday, June 08, 2008 7:08 PM To: sList Subject: RE: New member Your 2 cents are welcomed. Nicely said. Unfortunately Broward School District’s position is they do not do any one-on-one. From: sList [mailto:sList ] On Behalf Of M T C Sent: Sunday, June 08, 2008 1:36 PM To: sList Subject: RE: New member If the child cannot learn in a group setting following group instructions and needs more intense he/she should get that. This is why it is called an INDIVIDUAL E P. This more intense type of therapy is especailly important in the early years when they need it most and it has it's greates impact. Eventually the goal should be to get the child to a point where he/she can follow group instruction and be successful. Just my 2 cents. From: Heifferon <gary00001msn> Subject: RE: New member To: sList Date: Sunday, June 8, 2008, 11:20 AM I don’t mean to belittle the need to educate a parent on how to duplicate the appropriate services he receives from the educational establishment, but the primary responsibilities to educate comes from that establishment. My grandson has always been in a one-on-one setting for all his therapies. He is in the process of developing an IEP. Since the school district does not accept this approach, it is a main contention for his services. This is the main reason we skipped last year when he turned 3. Of course the school district had the option to continue his IFSP, but they will and not do it. I understand that this is there option. But for a parent it is difficult to understand the difference between 35 months and 36 months. It is as if something magical should have happened when he entered part B. We are no longer in a “medical” model; we enter the educational model, as if one is exclusive of the other. I view the whole situation as a struggle between individual, unique needs of the child and what the school district is willing to do. If the child will not respond to a group instruction what is the alternative? I understand the need for a group environment but his priority should be academic first and foremost. One of the areas that is ignored completely is the social problem. The problem requires a different and proactive approach. Instead of placing the disabled child in an environment with typical children, it should be reversed. We have situations where advanced readers are helping out other children who have reading problems. There should be situations where typical children are placed in the environment of disabled children. It would make for a good educational experience for typical children! It’s just a thought. From: sList@ yahoogroups. com [mailto:sList @yahoogroups. com] On Behalf Of Patti O'Meara Sent: Saturday, June 07, 2008 8:53 PM To: sList@ yahoogroups. com Subject: RE: New member Your daughter should not be the primary teacher for her children. As you stated, yes, there should be qualified therapists working with your grandson to address his needs. In addition to that, we have here in NY required by law for a child diagnosed with autism “parent training.” This service is provided by a qualified therapist who works with the parents/caregivers/ siblings to help in generalizing the skills already taught to the student. Is your grandson always in a group setting for speech? Does he receive speech on an individual basis also? From: sList@ yahoogroups. com [mailto:sList @yahoogroups. com] On Behalf Of Heifferon Sent: Saturday, June 07, 2008 5:42 PM To: sList@ yahoogroups. com Subject: RE: New member From: sList@ yahoogroups. com [mailto:sList @yahoogroups. com] On Behalf Of TinaTerriAustin Sent: Saturday, June 07, 2008 5:40 AM To: sList@ yahoogroups. com Subject: Re: New member Does the child also receive private Speech services and Occupational Therapy? OT can also improve symptoms of apraxia as apraxia is generally a global issue. Is the child receiving Verbal Behavior services? Have you and other family members been trained in Verbal Behavior? ANSWER: He presently receives SP, OT and ABA-DT. Daughter decided last year not to put him in a group setting because he wouldn’t learn in this type of setting. The school district’s approach is to have him learn in a group setting first. After all, every other disabled child learns in a group setting, why not autism? I call the answer the “shoe fits all syndrome” vs. the “Unique needs” requirement. For my grandson, the apraxia is more disabling than the autism. My daughter works with his son whenever she has the time. You have to realize she works fulltime and is raising another child, as well. I feel the therapy is better performed by someone already trained/educated and qualified in the needed area. Parents have the potential of becoming excellent therapists but also have the potential of becoming very poor therapists. In any case a school district wouldn’t hire a home trained parent to be a therapist because they don’t meet the qualifications. Yes, language and speech are complementary to each other and the learning of each supports the other. His IEP indicates he will receive 30 minutes per week of Speech, correct? And, is it an assumption that this service will occur in the classroom or was that stated in the meeting? Did they provide a reason for why and did anyone ask otherwise? Remember that any service provided to a child in public school is to help them access their academic environment. Any goal written has to have that purpose in mind. Answer: Actually I’m referring to another situation as well where the child is in a Place Program. His sessions are 30 minutes per session and that is how his IEP reads. But he is in a special class with 6 other children. I’m having problems with the math. If you are not satisfied, call for an interim meeting... I think I understand your concern in that the service is supposed to be for the child, but it is provided in the classroom, therefore the child does not appear to receive all they are entitled to. B/c the therapist can document they provided the service to all of the children and be done for the week, is that correct? Answer: I want to ensure if the child is granted 30 minutes per day , he himself receives it. New member Hello All, I am a new user on s List! I am an ESE teacher of children with autism and I'm excited to gather as much information as possible! Glad to be here! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Hmmm..... I am certain schools do not provide ABA, discrete trials, all day. However, children in cluster programs do receive individual learning time. Most teachers are trained to utilize the program STARs which is aba/discrete trials. Again, it is not all day but it is discrete trials and provided in a one-to-one setting. New member Hello All,I am a new user on s List! I am an ESE teacher of children with autism and I'm excited to gather as much information as possible! Glad to be here! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.