Guest guest Posted May 18, 2006 Report Share Posted May 18, 2006 I second everyones posts. To get the anemia under control you have to get the jra under control. No supplement will do it. MTX will decrease the inflammation and prevent long term damage. It is an old drug, well researched and documented. Counsel with your doc if you have concerns but know there are many taking this without problems and it works! For some it is a total wonder drug, for others they take other meds too but it is still doing good. e michaeltheresatoniann <michaeltheresatoniann@...> wrote: My daughter has had jra for the past 3 yrs. Last year she was given corticosteroids in her knees and went into remission for 10 months!! It's back and the naprosen and sulfasalazine that she is on is no longer working. Her dr. said its time for methotrexate. We are very scared to give this to her. She's only 5 yrs old! If there is anyone with information or suggestions we would greatly appreciate hearing from you. We are new to this group. Also she is very aneimic. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 It's nice to hear good news, but 6 years is a long time to go. gwencoroneos <crazygwenc@...> wrote: Hi everyone. My daughter was diognosed with when she was 7. Shelby is now 12, almost 13. We had some very tough years. It has now been over a year since she has had a fever or any symptoms at all. I just wanted to let everyone know that things really do get better. You will all hear different things and not be sure of any of them. There is light at the end of the tunnel though. We bounced from one doctor to another. This one wanted to take her tonsils, that one wanted to medicate her, another wanted to do ever test in the book, invasive, noninvasive. Finally, I hooked up with a wonderful Dr. at Childrens Hosp. in Phil. We both agreed to treat her fevers, when they came, and that was all. It was very hard watching her suffer threw the aches and pains. But now, puberty has set in and all is better for now. I'm not sure what will be in store for us down the road, but for now I have a healthy happy(although,sometimes fresh)preteen. I was a member of this group back then, and met alot of wonderful helping people. The only advise I have for anyone is: You are the only one who really knows your child. Listen to others, but in the end do what you feel is best for YOU and your child Sincerely, Gwen Coroneos --------------------------------- Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Thank you so much for your words of encouragement. I wish more people came back to tell us the happy endings. It is good to know there is a light at the end of the tunnel. Mom to , 4 since 9 months old --- gwencoroneos <crazygwenc@...> wrote: > Hi everyone. > My daughter was diognosed with when she was 7. > Shelby is now > 12, almost 13. We had some very tough years. It > has now been over > a year since she has had a fever or any symptoms at > all. I just > wanted to let everyone know that things really do > get better. You > will all hear different things and not be sure of > any of them. > There is light at the end of the tunnel though. We > bounced from one > doctor to another. This one wanted to take her > tonsils, that one > wanted to medicate her, another wanted to do ever > test in the book, > invasive, noninvasive. Finally, I hooked up with a > wonderful Dr. at > Childrens Hosp. in Phil. We both agreed to treat > her fevers, when > they came, > and that was all. It was very hard watching her > suffer threw the > aches and pains. But now, puberty has set in and > all is better for > now. I'm not sure what will be in store for us down > the road, but > for now I have a healthy happy(although,sometimes > fresh)preteen. > > I was a member of this group back then, and met alot > of wonderful > helping people. > > The only advise I have for anyone is: You are the > only one who > really knows your child. Listen to others, but in > the end do what > you feel is best for YOU and your child > > Sincerely, > > Gwen Coroneos > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Some forms of PFS children do outgrow...some they DO NOT! This is the very reason testing and testing and testing is CRUCIAL! I am so glad to hear your daughter is doing so well. Lori gwencoroneos <crazygwenc@...> wrote: Hi everyone. My daughter was diognosed with when she was 7. Shelby is now 12, almost 13. We had some very tough years. It has now been over a year since she has had a fever or any symptoms at all. I just wanted to let everyone know that things really do get better. You will all hear different things and not be sure of any of them. There is light at the end of the tunnel though. We bounced from one doctor to another. This one wanted to take her tonsils, that one wanted to medicate her, another wanted to do ever test in the book, invasive, noninvasive. Finally, I hooked up with a wonderful Dr. at Childrens Hosp. in Phil. We both agreed to treat her fevers, when they came, and that was all. It was very hard watching her suffer threw the aches and pains. But now, puberty has set in and all is better for now. I'm not sure what will be in store for us down the road, but for now I have a healthy happy(although,sometimes fresh)preteen. I was a member of this group back then, and met alot of wonderful helping people. The only advise I have for anyone is: You are the only one who really knows your child. Listen to others, but in the end do what you feel is best for YOU and your child Sincerely, Gwen Coroneos __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 In terms of degrees the fact of the matter is that it will slowly get worse until she has the surgery to hold it into place. So, the difference of 52 and 55 degrees is not worth focusing on too much. As far as the pain by her shoulder blade I'm imagining that it is caused by the rotation and curvature of the spine. After, the surgery if the pain doesn't get better i would check into other options like anti-inflammatory, deep tissue massages, heat, etc. It will be a lifestyle change but this is a disease and unfortunately there is no simple cure. I just had the surgery 3 years ago when I was 22. My curve was 110 but with no pain (well i might have just been used to the pain). After my surgery the curve had been incredibly improved to 40degrees. Because of the surgery I do have more pain by my ribs and the incisions but not by my shoulder blades or ribs rubbing against the side of my pelvic bone. I hope this helps and i wish you the best of luck with your daughter's surgery. One thing i know is that she is going to need you. I couldn't have done it without my mom. If you have any questions before, during, of after the surgery I am a great candidate to ask. Sincerely, Guidi From: <karendave56@...> Subject: My Daughter Scoliosis Treatment Date: Sunday, July 20, 2008, 7:46 AM Hi everyone, Quick question. We are schueled to have my daughters surgery on september 25,2008. We just went back to her dr not the one thats going to do the surgery but the one we had been seeing for the past years. My questoin is this When we went in Feb of 2008 she said my daughters curve was 52. So we went to seek another opinion. We went to childrens hospital and when the x-rayed her they said her curve was 55 degrees. Anyways We went back to the dr that said it was 52 and they x rayed her and said they must have made a mistake cuz her curve was 42. Now shes 18 she dosent wear a brace or anything else. The only thing is that she told the dr that her shoulder blade was painful and that motrin wasent helping. And she said that she has bursitis but that there was nothing she could do for her because they couldnt give her a cortizon shot due to the location and that she wouldnt want to take the chance in punchering her lung ? So what my daughter has to suffer witht his for the rest of her life? And my other question is because she has the bursitis in her shoulder blade on the side her curve is going do you think this would give an accurate x-ray? Thanks ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 I just wanted you to know that that was in the beginning now the dr that we had before has said it has decreased to 42 when in Feb she said it was 52. I agree we are at this point going to proceed with the surg date and wait until pre op to see what those xrays come up with Thank you so much and I will keep you in mind when we are going through this. thanks > > From: <karendave56@...> > Subject: My Daughter > Scoliosis Treatment > Date: Sunday, July 20, 2008, 7:46 AM > > Hi everyone, Quick question. We are schueled to have my daughters > surgery on september 25,2008. We just went back to her dr not the > one thats going to do the surgery but the one we had been seeing for > the past years. My questoin is this When we went in Feb of 2008 she > said my daughters curve was 52. So we went to seek another opinion. > We went to childrens hospital and when the x-rayed her they said her > curve was 55 degrees. Anyways We went back to the dr that said it > was 52 and they x rayed her and said they must have made a mistake > cuz her curve was 42. Now shes 18 she dosent wear a brace or > anything else. The only thing is that she told the dr that her > shoulder blade was painful and that motrin wasent helping. And > she said that she has bursitis but that there was nothing she could > do for her because they couldnt give her a cortizon shot due to the > location and that she wouldnt want to take the chance in punchering > her lung ? So what my daughter has to suffer witht his for the rest > of her life? And my other question is because she has the bursitis > in her shoulder blade on the side her curve is going do you think > this would give an accurate x-ray? > > Thanks > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 If I was you, I wouldn't have the surgery until I got a straight answer. There's a big difference between 52 and 42. And a dr who would make that mistake wouldn't be the dr I would want performing surgery on me or my child. If her curve is not progressing and that is the only pain she's having, it might be best to address that pain prior to having the surgery. The surgery might not even be necessary. I lived with 40 degree curve for many years. It progressed when I was older and I didn't have the surgery until I was in my late 40's and I'm glad I didn't have it when I was younger. I have a couple of friends who had good luck with injections relieving the pain of bursitits My Daughter Hi everyone, Quick question. We are schueled to have my daughters surgery on september 25,2008. We just went back to her dr not the one thats going to do the surgery but the one we had been seeing for the past years. My questoin is this When we went in Feb of 2008 she said my daughters curve was 52. So we went to seek another opinion. We went to childrens hospital and when the x-rayed her they said her curve was 55 degrees. Anyways We went back to the dr that said it was 52 and they x rayed her and said they must have made a mistake cuz her curve was 42. Now shes 18 she dosent wear a brace or anything else. The only thing is that she told the dr that her shoulder blade was painful and that motrin wasent helping. And she said that she has bursitis but that there was nothing she could do for her because they couldnt give her a cortizon shot due to the location and that she wouldnt want to take the chance in punchering her lung ? So what my daughter has to suffer witht his for the rest of her life? And my other question is because she has the bursitis in her shoulder blade on the side her curve is going do you think this would give an accurate x-ray? Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 Hi , You should be entitled to copies of all the x-rays. It is a pretty simple matter to measure the degree of the curve. I had my sugery last Sept and before it my curve measured 55 degrees in the lumbar area. Comparing it to x-ray done 3 years ago, the curve had increase 18 degrees in three years time. So did my pain. I could barely make it through the day as work even with a tems machine and all kinds of meds. Good luck to your daughter, Bev from Aurora, OH > > Hi everyone, Quick question. We are schueled to have my daughters > surgery on september 25,2008. We just went back to her dr not the > one thats going to do the surgery but the one we had been seeing for > the past years. My questoin is this When we went in Feb of 2008 she > said my daughters curve was 52. So we went to seek another opinion. > We went to childrens hospital and when the x-rayed her they said her > curve was 55 degrees. Anyways We went back to the dr that said it > was 52 and they x rayed her and said they must have made a mistake > cuz her curve was 42. Now shes 18 she dosent wear a brace or > anything else. The only thing is that she told the dr that her > shoulder blade was painful and that motrin wasent helping. And > she said that she has bursitis but that there was nothing she could > do for her because they couldnt give her a cortizon shot due to the > location and that she wouldnt want to take the chance in punchering > her lung ? So what my daughter has to suffer witht his for the rest > of her life? And my other question is because she has the bursitis > in her shoulder blade on the side her curve is going do you think > this would give an accurate x-ray? > > Thanks > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 My son's shoulder blade pain was resolved with the surgery. ************** Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 I would get all the xrays and bring them to a different scoliosis specialist. If it is 42 degrees I would wait on the surgery and see if it progresses. If it is 50 degrees or over I would get the surgery. My son had surgery on May 5th for a 50 degree curve and he is doing well. From: <karendave56@...> Subject: Re: My Daughter Scoliosis Treatment Date: Sunday, July 20, 2008, 10:20 PM I just wanted you to know that that was in the beginning now the dr that we had before has said it has decreased to 42 when in Feb she said it was 52. I agree we are at this point going to proceed with the surg date and wait until pre op to see what those xrays come up with Thank you so much and I will keep you in mind when we are going through this. thanks > > From: <karendave56@ ...> > Subject: My Daughter > Scoliosis Treatment > Date: Sunday, July 20, 2008, 7:46 AM > > Hi everyone, Quick question. We are schueled to have my daughters > surgery on september 25,2008. We just went back to her dr not the > one thats going to do the surgery but the one we had been seeing for > the past years. My questoin is this When we went in Feb of 2008 she > said my daughters curve was 52. So we went to seek another opinion. > We went to childrens hospital and when the x-rayed her they said her > curve was 55 degrees. Anyways We went back to the dr that said it > was 52 and they x rayed her and said they must have made a mistake > cuz her curve was 42. Now shes 18 she dosent wear a brace or > anything else. The only thing is that she told the dr that her > shoulder blade was painful and that motrin wasent helping. And > she said that she has bursitis but that there was nothing she could > do for her because they couldnt give her a cortizon shot due to the > location and that she wouldnt want to take the chance in punchering > her lung ? So what my daughter has to suffer witht his for the rest > of her life? And my other question is because she has the bursitis > in her shoulder blade on the side her curve is going do you think > this would give an accurate x-ray? > > Thanks > > > > ------------ --------- --------- ------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 I totally agree. I would not go ahead with the surgery at this point. The fact that the curve might have actually decreased is reason in and of itself. The surgery is a big one and it doesn't sound like the curve is progressing enough to make it something to rush into. There could be other ways of dealing with the shoulder pain. My Daughter > Scoliosis Treatment > Date: Sunday, July 20, 2008, 7:46 AM > > Hi everyone, Quick question. We are schueled to have my daughters > surgery on september 25,2008. We just went back to her dr not the > one thats going to do the surgery but the one we had been seeing for > the past years. My questoin is this When we went in Feb of 2008 she > said my daughters curve was 52. So we went to seek another opinion. > We went to childrens hospital and when the x-rayed her they said her > curve was 55 degrees. Anyways We went back to the dr that said it > was 52 and they x rayed her and said they must have made a mistake > cuz her curve was 42. Now shes 18 she dosent wear a brace or > anything else. The only thing is that she told the dr that her > shoulder blade was painful and that motrin wasent helping. And > she said that she has bursitis but that there was nothing she could > do for her because they couldnt give her a cortizon shot due to the > location and that she wouldnt want to take the chance in punchering > her lung ? So what my daughter has to suffer witht his for the rest > of her life? And my other question is because she has the bursitis > in her shoulder blade on the side her curve is going do you think > this would give an accurate x-ray? > > Thanks > > > > ------------ --------- --------- ------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 oh brother. Neither doctor made mistakes, most likely. See, curves are less in the morning and more in the afternoon, from standing. The spine sort of compresses causing the bigger curves in the afternoon. The thing is, 55 degrees or so is a moderate curve and considering the age of your daughter, it's a good time to get the surgery so she can get the best correction in her curve(s). Lj From: <karendave56@...> Subject: My Daughter Scoliosis Treatment Date: Sunday, July 20, 2008, 10:46 AM Hi everyone, Quick question. We are schueled to have my daughters surgery on september 25,2008. We just went back to her dr not the one thats going to do the surgery but the one we had been seeing for the past years. My questoin is this When we went in Feb of 2008 she said my daughters curve was 52. So we went to seek another opinion. We went to childrens hospital and when the x-rayed her they said her curve was 55 degrees. Anyways We went back to the dr that said it was 52 and they x rayed her and said they must have made a mistake cuz her curve was 42. Now shes 18 she dosent wear a brace or anything else. The only thing is that she told the dr that her shoulder blade was painful and that motrin wasent helping. And she said that she has bursitis but that there was nothing she could do for her because they couldnt give her a cortizon shot due to the location and that she wouldnt want to take the chance in punchering her lung ? So what my daughter has to suffer witht his for the rest of her life? And my other question is because she has the bursitis in her shoulder blade on the side her curve is going do you think this would give an accurate x-ray? Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 You just described our daily life. Have you been looking in the windows at the on house? Just kidding. We have this problem all the time with both of our daughters actually. Our oldest that is on the spectrum started doing it about 2 years ago. Our youngest that is not realized that it was a way for her to get attention and does it almost on a daily basis. We clean up a lot of poop around here. What we have done and still try to do is to put them in footed sleepers with the feet cut out backwards. Now our oldest that is ASD has figured out how to take hers off in the dark. Baby has not yet. It always happens here at night. We will find it all over the walls, bed, toys, etc. You name it I have tried to clean it and eventually I just get tired and something will " disappear " As long as we keep the sleepers on backwards and just cut off the feet it works. Some nights we are in a hurry and forget what clothes they have on,we pay for it. I feel you I really do!!!! I am tired of giving baths and changing beds at 2 and 3 in the morning and then again at 7!!!! Vada > > does anyone know where I would get pajamas for my severely autistic daughter cotton ones that zip or button from the back we have put the fleece ones on her backwards that seems to work, I need some long sleeve and some that are one piece short sleeves and legs if someone can direct me to a website store otherwise my daughter when we are sleeping had a tendency to wipe her poop all over her room all over her in the middle of the night while we are sleeping does anyone know where we are coming from > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 vada another things is of placing like body suits on as t shirts I to think one here on this list used to create of her own sort of specializes sung onesie like things for this reason. much of the kids do this out of bordom and out of trying to rid of the mess, some then use it of as a way of art not aware of the over all mess or social aspects of it. I to also think placing pants on with a belt at night but have of the belt on backwards so that the belt is of fastened to the back of them not the front but sung enough they cant pull of their pants down but not to sung to cause any harm or discomfort. if they are of having bowel movements in the early parts of mornings it might be of good to try to set of the alarm and take of her to the potty each night around the 1-2 am time frame and try to see if one can bowel train her under her current pattern for now, but to increase the changes of eliminations to the potty instead of the mess. I to think the one is of waking and doing this behavior is of also maybe waking the baby who is of imitating of her sibling and thinking this is of play and is of doing it to actually play and relate to her sibling. it will be of hard for now to teach the baby no when older sibling is of doing this. also maybe if you have of access to a video recorder, you can set of the camera to a tri pod and let it continously feed for a few nights like this so you can be of to see of her waking process and patterns to do this so you can gain of insight when and where to intervene correctly to this behavior and teach a wanted or desired outcome instead of her current fashion of it. sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Yes... Sondra is right, I used to create these jumpsuits specifically for this purpose for my daughters and son, all of whom have autism. I still sell them online if you are interested and can make them with long sleeves and pant legs too if you need that. I call them my " No More Smears " Jumpers and they work so well. My middle daughter used to be Harry Hudini and could get out of anything, but not these... I designed them around her. Here is the link if you are interested. http://www.esthersmithbooks.com/nomoresmears.html Also If you want a different color... as long as it is just a plain color or something easy that anyone will carry like something with cars or something with daisies or that sorta thing, I can basically get whatever color you want. Let me know! And yes it is normal for our kids with autism to do this. Yes they get over it and all three of my kids are potty trained now. Mostly thanks to the books I made for them. Sincerely, Esther Author of No More Diaper http://www.esthersmithbooks.com/index.html http://www.amazon.com/No-More-Diapers-Esther-/dp/1594330697/ref=sr_1_10?ie=\ UTF8 & s=books & qid=1237286330 & sr=8-10 http://search.barnesandnoble.com/No-More-Diaper/Esther-/e/9781594330698/?it\ m=20 http://www.pottytrainingconcepts.com/9781594330698.html http://www.target.com/dp/1594330697/sr=1-3/qid=1237285873/ref=sr_1_3/190-5994087\ -5274121?ie=UTF8 & frombrowse=0 & index=target & rh=k%3ANo%20More%20Diapers & page=1 Subject: Re: my daughter To: Autism_in_Girls_and_Women Date: Monday, March 16, 2009, 8:45 PM vada another things is of placing like body suits on as t shirts I to think one here on this list used to create of her own sort of specializes sung onesie like things for this reason. much of the kids do this out of bordom and out of trying to rid of the mess, some then use it of as a way of art not aware of the over all mess or social aspects of it. I to also think placing pants on with a belt at night but have of the belt on backwards so that the belt is of fastened to the back of them not the front but sung enough they cant pull of their pants down but not to sung to cause any harm or discomfort. if they are of having bowel movements in the early parts of mornings it might be of good to try to set of the alarm and take of her to the potty each night around the 1-2 am time frame and try to see if one can bowel train her under her current pattern for now, but to increase the changes of eliminations to the potty instead of the mess. I to think the one is of waking and doing this behavior is of also maybe waking the baby who is of imitating of her sibling and thinking this is of play and is of doing it to actually play and relate to her sibling. it will be of hard for now to teach the baby no when older sibling is of doing this. also maybe if you have of access to a video recorder, you can set of the camera to a tri pod and let it continously feed for a few nights like this so you can be of to see of her waking process and patterns to do this so you can gain of insight when and where to intervene correctly to this behavior and teach a wanted or desired outcome instead of her current fashion of it. sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 I know exactly...that is what we have been going through! It's a nightmare! We are doing the HOBT therapy and almost everytime she is in the tank she does #2 and starts painting with it, so her therapy has been cut short. We bought leotards(one piece dance bodysuits)by danceskin, walmart has them. But we need 100% cotton for the HOBT(hyperbarics) and i found one place online... havent ordered yet, expensive so I bought some hanes undershirs(a little larger) and I sewed the bottom together because they are 100%cotton and that's what we are using for therapy (she wears under her clothes)and she cant get to her pull-up. It's great. I will see if i can find that website and i will let you know if i find it again. Oh yeah, the place i found on the internet they had snaps and i think buttons. Take care Ronda > > does anyone know where I would get pajamas for my severely autistic daughter cotton ones that zip or button from the back we have put the fleece ones on her backwards that seems to work, I need some long sleeve and some that are one piece short sleeves and legs if someone can direct me to a website store otherwise my daughter when we are sleeping had a tendency to wipe her poop all over her room all over her in the middle of the night while we are sleeping does anyone know where we are coming from > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 I sometimes feel like answering the phone " Poops R us! " The poop thing is the most difficult parenting ordeal. She is a Houdini and folds and contorts in every possible way. I have tried the backwards one piece Pjs. Now I am back to duct tape in the night to hold her diaper around her waist I know sounds cruel but works. Not as much laundry, wall scraping . She can't pull the tape and I make sure the diapers have a really high waist so that the tape is never in contact with her skin and just tight enough so she can't get them pulled down over her hips. She is almost twelve and still smears. Everywhere! So this cuts it back. In the day I can catch it and clean it but in the night it drysand is harder to clean. This is the only solution that has worked for me. -- Re: my daughter I know exactly...that is what we have been going through! It's a nightmare! We are doing the HOBT therapy and almost everytime she is in the tank she does #2 and starts painting with it, so her therapy has been cut short. We bought leotards(one piece dance bodysuits)by danceskin, walmart has them. But we need 100% cotton for the HOBT(hyperbarics) and i found one place online... havent ordered yet, expensive so I bought some hanes undershirs(a little larger) and I sewed the bottom together because they are 100%cotton and that's what we are using for therapy (she wears under her clothes)and she cant get to her pull-up. It's great. I will see if i can find that website and i will let you know if i find it again. Oh yeah, the place i found on the internet they had snaps and i think buttons. Take care Ronda > > does anyone know where I would get pajamas for my severely autistic daughter cotton ones that zip or button from the back we have put the fleece ones on her backwards that seems to work, I need some long sleeve and some that are one piece short sleeves and legs if someone can direct me to a website store otherwise my daughter when we are sleeping had a tendency to wipe her poop all over her room all over her in the middle of the night while we are sleeping does anyone know where we are coming from > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 this might sound cruel, but it is comforting to hear of someone who know where I'm coming from I will try that thanks ________________________________ To: Autism_in_Girls_and_Women Sent: Tuesday, March 17, 2009 10:00:21 AM Subject: Re: Re: my daughter I sometimes feel like answering the phone " Poops R us! " The poop thing is the most difficult parenting ordeal. She is a Houdini and folds and contorts in every possible way. I have tried the backwards one piece Pjs. Now I am back to duct tape in the night to hold her diaper around her waist I know sounds cruel but works. Not as much laundry, wall scraping . She can't pull the tape and I make sure the diapers have a really high waist so that the tape is never in contact with her skin and just tight enough so she can't get them pulled down over her hips. She is almost twelve and still smears. Everywhere! So this cuts it back. In the day I can catch it and clean it but in the night it drysand is harder to clean. This is the only solution that has worked for me. -- [Autism_in_Girls_ and_Women] Re: my daughter I know exactly...that is what we have been going through! It's a nightmare! We are doing the HOBT therapy and almost everytime she is in the tank she does #2 and starts painting with it, so her therapy has been cut short. We bought leotards(one piece dance bodysuits)by danceskin, walmart has them. But we need 100% cotton for the HOBT(hyperbarics) and i found one place online... havent ordered yet, expensive so I bought some hanes undershirs(a little larger) and I sewed the bottom together because they are 100%cotton and that's what we are using for therapy (she wears under her clothes)and she cant get to her pull-up. It's great. I will see if i can find that website and i will let you know if i find it again. Oh yeah, the place i found on the internet they had snaps and i think buttons. Take care Ronda > > does anyone know where I would get pajamas for my severely autistic daughter cotton ones that zip or button from the back we have put the fleece ones on her backwards that seems to work, I need some long sleeve and some that are one piece short sleeves and legs if someone can direct me to a website store otherwise my daughter when we are sleeping had a tendency to wipe her poop all over her room all over her in the middle of the night while we are sleeping does anyone know where we are coming from > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 this might sound cruel, but it is comforting to hear of someone who know where I'm coming from I will try that thanks ________________________________ To: Autism_in_Girls_and_Women Sent: Tuesday, March 17, 2009 10:00:21 AM Subject: Re: Re: my daughter I sometimes feel like answering the phone " Poops R us! " The poop thing is the most difficult parenting ordeal. She is a Houdini and folds and contorts in every possible way. I have tried the backwards one piece Pjs. Now I am back to duct tape in the night to hold her diaper around her waist I know sounds cruel but works. Not as much laundry, wall scraping . She can't pull the tape and I make sure the diapers have a really high waist so that the tape is never in contact with her skin and just tight enough so she can't get them pulled down over her hips. She is almost twelve and still smears. Everywhere! So this cuts it back. In the day I can catch it and clean it but in the night it drysand is harder to clean. This is the only solution that has worked for me. -- [Autism_in_Girls_ and_Women] Re: my daughter I know exactly...that is what we have been going through! It's a nightmare! We are doing the HOBT therapy and almost everytime she is in the tank she does #2 and starts painting with it, so her therapy has been cut short. We bought leotards(one piece dance bodysuits)by danceskin, walmart has them. But we need 100% cotton for the HOBT(hyperbarics) and i found one place online... havent ordered yet, expensive so I bought some hanes undershirs(a little larger) and I sewed the bottom together because they are 100%cotton and that's what we are using for therapy (she wears under her clothes)and she cant get to her pull-up. It's great. I will see if i can find that website and i will let you know if i find it again. Oh yeah, the place i found on the internet they had snaps and i think buttons. Take care Ronda > > does anyone know where I would get pajamas for my severely autistic daughter cotton ones that zip or button from the back we have put the fleece ones on her backwards that seems to work, I need some long sleeve and some that are one piece short sleeves and legs if someone can direct me to a website store otherwise my daughter when we are sleeping had a tendency to wipe her poop all over her room all over her in the middle of the night while we are sleeping does anyone know where we are coming from > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Here are 2 websites to check out. They sell leotards/bodysuits, that is what i put under my daughters clothes. Hope this helps. http://www.yougogirldance.com/Short_Sleeve_Leotard.htm http://www.decentexposures.com/leotards.shtml > > does anyone know where I would get pajamas for my severely autistic daughter cotton ones that zip or button from the back we have put the fleece ones on her backwards that seems to work, I need some long sleeve and some that are one piece short sleeves and legs if someone can direct me to a website store otherwise my daughter when we are sleeping had a tendency to wipe her poop all over her room all over her in the middle of the night while we are sleeping does anyone know where we are coming from > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Here are 2 websites to check out. They sell leotards/bodysuits, that is what i put under my daughters clothes. Hope this helps. http://www.yougogirldance.com/Short_Sleeve_Leotard.htm http://www.decentexposures.com/leotards.shtml > > does anyone know where I would get pajamas for my severely autistic daughter cotton ones that zip or button from the back we have put the fleece ones on her backwards that seems to work, I need some long sleeve and some that are one piece short sleeves and legs if someone can direct me to a website store otherwise my daughter when we are sleeping had a tendency to wipe her poop all over her room all over her in the middle of the night while we are sleeping does anyone know where we are coming from > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Here are 2 websites to check out. They sell leotards/bodysuits, that is what i put under my daughters clothes. Hope this helps. http://www.yougogirldance.com/Short_Sleeve_Leotard.htm http://www.decentexposures.com/leotards.shtml > > does anyone know where I would get pajamas for my severely autistic daughter cotton ones that zip or button from the back we have put the fleece ones on her backwards that seems to work, I need some long sleeve and some that are one piece short sleeves and legs if someone can direct me to a website store otherwise my daughter when we are sleeping had a tendency to wipe her poop all over her room all over her in the middle of the night while we are sleeping does anyone know where we are coming from > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 I am in several buy/sell/trade groups. LMK if its ok to have them contact u for what your're looking for: plz set up an " ad " so I can send it, along with contact info. Hope I can help! hugs -- my daughter does anyone know where I would get pajamas for my severely autistic daughter cotton ones that zip or button from the back we have put the fleece ones on her backwards that seems to work, I need some long sleeve and some that are one piece short sleeves and legs if someone can direct me to a website store otherwise my daughter when we are sleeping had a tendency to wipe her poop all over her room all over her in the middle of the night while we are sleeping does anyone know where we are coming from Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 I am in several buy/sell/trade groups. LMK if its ok to have them contact u for what your're looking for: plz set up an " ad " so I can send it, along with contact info. Hope I can help! hugs -- my daughter does anyone know where I would get pajamas for my severely autistic daughter cotton ones that zip or button from the back we have put the fleece ones on her backwards that seems to work, I need some long sleeve and some that are one piece short sleeves and legs if someone can direct me to a website store otherwise my daughter when we are sleeping had a tendency to wipe her poop all over her room all over her in the middle of the night while we are sleeping does anyone know where we are coming from Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2009 Report Share Posted June 2, 2009 > > Hello, I have a question from my daughter. She is soon to be 40 years old. 9 years ago she had a IUD put in. She has always had some problems with it, heavy menstral cycles, some pain and discomfort during intercourse. <snip> > My daughter is not a believer in changing to this kind of diet. I told her when it it a matter of life or death that you see things differently, I know because it took me about 3 years before I understood what was going on in my body and then made a commitment to stick to this diet. > For her to even have me send this e-mail shows me that she sees something good happening in my life. +++Hi Angie. I wish I could help you help your daughter, but often daughters do not take good advice for us. If she isn't a believer then unfortunately there isn't much you can do about it. They say you can " lead a horse to water but you can't make him drink. " This is true for our children too. My daughter went through 2 unnecessary operations last year because she doesn't want to listen to me, and she says she wants " quick fixes " instead. It takes a lot of work to do this program and a lot of people don't understand the basics of health, and they don't want to learn either. She made some small changes like getting rid of her Canola oil and using Extra Virgin Olive Oil instead, and thank goodness she serves meats and vegetables for supper every day, but they still eat lots of chips, sugars, fruit drinks, grains, pastas, etc. She'd rather give my granddaughter Gatorade as the doctor recommended, than give her my Electrolyte Drink. I wish I could be more encouraging but I'm having a rough time with my daughters too. Luv & Hugs, Bee Quote Link to comment Share on other sites More sharing options...
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