Guest guest Posted August 13, 2005 Report Share Posted August 13, 2005 Hi Shirley, I am sorry to hear what a rough time your having. I was also hospitalized last year with the RA affecting my heart. I just want you to know that I will keep you in my prayers, and I am always here if you would like to email me. Hugs, Tawny > Dear Friends in the RA group: > > Just a note to all of you as I need your prayers, the ole RA is affecting my > heart and lungs and has been for over a year now. I just had the pleural > space of my left lung drained while in a CT scanner and a CT of my heart > yesterday at the hospital. I have pericarditis and rheumatoid lung. The fluid gives > me pain in my upper back and I cough and am short of air and the pericarditis > gives me chest pains and I have had it for several months now. I know this > to will pass as it hasn't been continuous. I had sepsis infection in January > and was in the Poudre Valley hospital in Ft. Colorado for nine days in > ICU, I almost didn't make it my blood pressure was 53/32 and they told my > family if I had waited until morning I would not have made it. Please pray for me > and my problems. Also my RA is out of control and I have really been hurting > as I have been on high doses of prednisone because of the fluid and heart > problem and they are now bumping me down and when I dropped to 30 on Monday I got > really bad. I would appreciate hearing from anyone in the group about these > current problems I am having. I love this group and I don't get to post to > often but I read most all of the posts daily. > > Hoping to hear from anyone in the group. > > Love and Prayers > Shirley > Edmis3@a... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2005 Report Share Posted August 13, 2005 Hi Shirley, I will pray that your health problems begin to ease off. Did you go back to a higher dose of Prednisone? Hugs June ----- Original Message ----- From: Edmis3@... Dear Friends in the RA group: Just a note to all of you as I need your prayers, the ole RA is affecting my heart and lungs and has been for over a year now. I just had the pleural space of my left lung drained while in a CT scanner and a CT of my heart yesterday at the hospital. I have pericarditis and rheumatoid lung. The fluid gives me pain in my upper back and I cough and am short of air and the pericarditis gives me chest pains and I have had it for several months now. I know this to will pass as it hasn't been continuous. I had sepsis infection in January and was in the Poudre Valley hospital in Ft. Colorado for nine days in ICU, I almost didn't make it my blood pressure was 53/32 and they told my family if I had waited until morning I would not have made it. Please pray for me and my problems. Also my RA is out of control and I have really been hurting as I have been on high doses of prednisone because of the fluid and heart problem and they are now bumping me down and when I dropped to 30 on Monday I got really bad. I would appreciate hearing from anyone in the group about these current problems I am having. I love this group and I don't get to post to often but I read most all of the posts daily. Hoping to hear from anyone in the group. Love and Prayers Shirley Edmis3@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2005 Report Share Posted August 14, 2005 Shirley, I am sorry you have to go through all of this. I don't pray but I will be thinking of you often. I wish there was some pill that we could take and make all this go away. I hope you get better real soon. hugs, Corinne Edmis3@... wrote: > Dear Friends in the RA group: > > Just a note to all of you as I need your prayers, the ole RA is > affecting my > heart and lungs and has been for over a year now. I just had the > pleural > space of my left lung drained while in a CT scanner and a CT of my heart > yesterday at the hospital. I have pericarditis and rheumatoid lung. > The fluid gives > me pain in my upper back and I cough and am short of air and the > pericarditis > gives me chest pains and I have had it for several months now. I know > this > to will pass as it hasn't been continuous. I had sepsis infection in > January > and was in the Poudre Valley hospital in Ft. Colorado for nine > days in > ICU, I almost didn't make it my blood pressure was 53/32 and they told my > family if I had waited until morning I would not have made it. Please > pray for me > and my problems. Also my RA is out of control and I have really been > hurting > as I have been on high doses of prednisone because of the fluid and heart > problem and they are now bumping me down and when I dropped to 30 on > Monday I got > really bad. I would appreciate hearing from anyone in the group > about these > current problems I am having. I love this group and I don't get to > post to > often but I read most all of the posts daily. > > Hoping to hear from anyone in the group. > > Love and Prayers > Shirley > Edmis3@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2005 Report Share Posted August 14, 2005 Dear Shirley, my heart goes out to you. I just read your post. Sounds like you are having a very hard time right now, I pray God will bless you today with peace and relief of your troubles. I read daily of everyone's pain and wish there was more I could do than just pray. I'm so glad whoever started this group did so. WE all need somewhere to turn to sometimes. I will keep you in my prayers , Shirley, and hope today is better for you.. Hugs, ____________________________________________________ Start your day with - make it your home page http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2005 Report Share Posted August 14, 2005 Shirley, I'm so sorry for all that you're going through. I will surely keep you in my prayers. I have several articles on rheumatoid lung on my site: http://rheumatoid.arthritis.freehosting.net/Rheumatoid Arthritis.html Are you still taking the Enbrel 3 times a week? Has your doctor considered switching you to something else? I hope you can find something to give you relief and get the RA under control. a On Aug 13, 2005, at 4:03 PM, Edmis3@... wrote: > Dear Friends in the RA group: > > Just a note to all of you as I need your prayers, the ole RA is > affecting my > heart and lungs and has been for over a year now. I just had the > pleural > space of my left lung drained while in a CT scanner and a CT of my > heart > yesterday at the hospital. I have pericarditis and rheumatoid lung. > The fluid gives > me pain in my upper back and I cough and am short of air and the > pericarditis > gives me chest pains and I have had it for several months now. I > know this > to will pass as it hasn't been continuous. I had sepsis infection in > January > and was in the Poudre Valley hospital in Ft. Colorado for > nine days in > ICU, I almost didn't make it my blood pressure was 53/32 and they > told my > family if I had waited until morning I would not have made it. > Please pray for me > and my problems. Also my RA is out of control and I have really been > hurting > as I have been on high doses of prednisone because of the fluid and > heart > problem and they are now bumping me down and when I dropped to 30 on > Monday I got > really bad.  I would appreciate hearing from anyone in the group > about these > current problems I am having. I love this group and I don't get to > post to > often but I read most all of the posts daily. > > Hoping to hear from anyone in the group. > > Love and Prayers > Shirley > Edmis3@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2005 Report Share Posted September 7, 2005 Corinne, I had to stop mtx a few times because of the high enzymes. The last time I went to the rheumy, did my lab work, the enzymes came back high. I had to go back again for lab work, and haven't heard back. The first time I was on mtx, I went off it for about six months. So, it probably depends on the doctor, and how your enzymes are. The mtx really works for me, and it's really sad when something works, and causes so much problems too. Tawny > How many people on here have had to stop taking methotrexate due to high > liver enzynes and for how long.. > > Corinne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2005 Report Share Posted September 7, 2005 I was taken off it 15 years ago due to high liver enzymes. However, I have started taking it again 7.5mg once a week to see if I can now tolerate it. I take Enbrel and it would seem this combination works better than Enbrel by itself. I get my labs done every 3 weeks so if something is wrong it will be caught in time. Hugs June [ ] (no subject) How many people on here have had to stop taking methotrexate due to high liver enzynes and for how long.. Corinne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2005 Report Share Posted September 23, 2005 Wonder if the " chemical exposure " kids are exposed to will include mercury in vaccines. Hmmm. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 At 08:59 AM 4/29/2006, " maryanne devito " mrynnqt@... wrote: > I just started homeschooling last year. Have not been pushing > much. My son is 12 going on 13. He has AS. I was wondering if anyone > out there can answer my question. How can AS kids get a dipolma? Can > they do a GED at home? How does that work if the child is not in a > public/private school or does not want to go to college and learns > differently? Any advice? Laws vary from state to state so you may need to confirm this, but afaik your homeschooled child gets to graduate high school when you've completed the homeschool program. There are lots of online resources available to help with this, or you can devise your own program. Getting a GED is, if you wish, something that would be seperate and in a sense unrelated to your homeschool program. Some colleges have been requiring this of homeschoolers, some do not. It's getting to be a bit controversial because of the stigma attached to GED's. Our son is 9 and homeschooling 3d grade right now so I am only repeating things have read by others closer to your situation. hth, Marty -- Mainstreaming Experiences & Strategies MainstreamingDisabledKids/ Asperger's/High Functioning Autism Homeschooler's discussion list as-hfa-homeschool/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2007 Report Share Posted January 26, 2007 I think he is Magnesium deficient http://www.enzymestuff.com/magnesium.htm the third item down at this web page http://www.berardaitwebsite.com/sait/newsletters/saitt19.html My son needs tons of Magnesium to function well. My 2 cents Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 That is how do you get an adult (husband) to go when he doesn't think anything is wrong with himselfjust the kids! Delores Goneau Ahhh...imagining that irresistible "new car" smell? Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 You tell him to go to help you both deal with the problems the kids are causing. Or go yourself with the kids and find ways to help deal with the dh as well. I know it's not a simple thing to accomplish! But it sure isn't fair thate you have to deal with it "all." I would definitely let him know that it hurts your marriage when he doesn't help. RoxannaAutism Happens ( ) Re:(no subject) That is how do you get an adult (husband) to go when he doesn't think anything is wrong with himselfjust the kids! Delores Goneau Ahhh...imagining that irresistible "new car" smell?Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2007 Report Share Posted July 4, 2007 > > I thought when I joined the group it was to discuss the benefits that LND > has on MS. This calendar on spasticity is way off base, and yes I also find it > sick and offensive, I personally would rather not read about it. > The calendar should not be aloud to be discussed on this site. > > > This group is to discuss Low Dose Naltrexone and it's effect on all diseases, not just multiple sclerosis. Sometimes people post off topic material and they should specify such in the subject line. Art Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 You are the only one that can take yourself off of the list. You need to click on the bottom of one of the e-mails and follow the instructions. It might take a while, and you might need to do it a few times. My best Aletha [low dose naltrexone] (no subject) please take me off the list See what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 The 'completely capable' is what the school kept saying to us; you may think so, and she may eventually do it, but is it worth the battles??? I have walked in these steps, and believe it is not for either party......'completely capable' perhaps by appearance and grades but it IS part of their disability.....my first grader has 3-5 minutes of home work about 3 nights a week, and he already complains about it, each and every single night.......it IS hard for them......I am not making excuses, but this is my second aspies coming through the system of school and learning here, and so I feel like I am ahead of the game for him, and can meet and treat him accordingly.......that IS my job as his mom; I make his fun and exciting so we are doing it; when he ages, I WILL be right there, ensuring his needs ARE met, or I will do it at home, myself; my kids come first. GLAD NICOLE GOT THE WORK DONE---that is great, too......Ruthie From: debmetsfan@...Date: Mon, 10 Mar 2008 19:39:52 -0400Subject: ( ) (no subject) is told in a calm, pleasant voice to do something. And then the calm, pleasant voice is ignored until I raise my voice. she does not listen to calm, pleasant voices. I told to do 4 pages of her homework per night. She did not do any on the first night. I told her then you will have to do 8 pages tomorrow. She did not do it that night either. So then all this time goes by and nothing is done because she does not feel like doing it. She is the same way with everything. She may not need to answer every question but I do feel that she needs to do at least half of them. She is capable of doing them. Therefore, I expect her to work up to her capabilities. As far as I know, all of her homework is done now. Hurray! And conferences are this week. So there should be some good discussions this week. Deb Re: Is Making Me Crazy! Posted by: "" cindyelgamalsbcglobal (DOT) net cindye1021 Sat Mar 8, 2008 10:32 pm (PST) Deb - While I do understand your frustration, I do think that our kidsrespond better when we ask them in a calm and pleasant tone to do something.It is really no different than expecting them to ask us something in arespectful manner. Just because they are our children doesn't mean weshouldn't be respectful to them.Re: homework - our kids see no sense in repeating something they alreadyknow how to do. My son is now in a private school and does have homeworkbut it doesn't seem excessive, e.g., today he had to do terms and names forhistory - this consisted of telling the meaning of a term or explaining whoa person was (six total) - and this took him a total of about 10 or 15minutes. He never has more than 30 minutes to an hour of homework daily andI don't think this is too much for his age (he is a junior in high school).But, when he was in public school he had shortened homework on his IEP -while the class may have had 20 math problems to do, Tyler only had to do10. I think it is also helpful that Tyler is in a very supportive andnurturing environment. When he was in the public school system he, for alack of a better way to say this, had just had it by the time he came home.He had spent the entire day in a very noisy and chaotic environment wherethere were frequent changes and he had been bombarded all day with thenoise, commotion, crowded hallways, people shoving, interactions with many,many people, and on and on. Most days Tyler came home and slept - I thinkpart of this was reparative and part of this was probably from depression.Our kids also get overwhelmed sometimes by large amounts of work or bigprojects, which may be what is experiencing. They don't know how tobreak assignments down into manageable pieces, how to start a big project,and, I think, many don't know how or when to ask for help. They then justshut down and do nothing. We had this happen with Tyler last semester inhis IPC (Integrated Physics & Chemistry) class - he had a project to do thathe had known about for weeks and the teacher had talked to the class aboutfor weeks. When questioned in class about his project he kept assuring theteacher he was working on it; when asked to produce material he would say hehad left it at home. Well, you guessed it - the day the project was dueTyler did not have his done. He finally did complete the project with helpin breaking it down into manageable pieces, help in setting up a timetableand determining how much time each part would take, etc. While many of ourkids are very bright they lack executive functioning skills and must betaught these. If has always done well in school and is strugglingnow you need to find out why. If I were you I would ask for a meeting todiscuss your concerns and ask for help in figuring out what is wrong andwhat actions need to be taken.Best wishes, It's Tax Time! Get tips, forms and advice on AOL Money Finance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 For my son, I don't believe in "no homework". I know my son can do it. When he has an assignment that is more complicated than usual (or if it looks like he's having a hard time getting started w/ something easy), I will get him to tell me what the assignment is about, what the first steps are, what his ideas are, etc... If there are lots of parts to an assignment, we will break it up in shorter tasks. For example, he has a writing assignment that was supposed to be two pages of writing. Although he has progressed tremendously with his writing this year, two pages at one time can be overwhelming. The paper had three parts to it (talk about A, talk about B, compare/contrast A and so we only focused on A at first ("tell me about A in your own words"), then did the same with B after A was completed, then had a short discussion back and forth about comparing/contrasting the two. I don't have a problem planting some ideas in his head if he gets stuck, but I really try to get him to come up with things on his own if possible. For 's situation, I wonder if Deb had sat down with her every evening and helped her get started (and encouraged her along the way) if she could've completed 4 pages each night? I think her ideas were on target, she just should've been a bit more involved with checking on her progress and being positive about 's abilities. I can tell you if I wasn't positive about Dylan being able to do his homework and projects, there's no way he would be able to get past his fear of being able to do it. I tell him more than once "I know you can do it. I have no doubts in your abilities." I'm kind of like his cheerleader, I guess. If I wasn't nice and positive though, he would be stuck big time. The hardest thing for me is when he has missing assignments so we have to do a bunch of work at one time. Generally, I contact his teachers and figure out which assignments need to be done sooner rather than later and we just come up with a plan. I've never had a teacher not work with me on adjusting due dates so we can get everything completed. I get nervous about Dylan going to high school and the types of assignments he'll have then (not looking forward to a long research paper!) but we'll cross that bridge when we come to it. So bottom line summary - be invested in helping your child start their homework and encourage them along the way too. Break assignments up into manageable sections and work with teachers to adjust due dates if possible. If you are frustrated b/c you don't feel like working on a science project on your Sunday afternoon, do everything you can do leave that negative attitude in another room. If you bring negativity into the mix, it'll just drive you both nuts. ( ) (no subject) is told in a calm, pleasant voice to do something. And then the calm, pleasant voice is ignored until I raise my voice. she does not listen to calm, pleasant voices. I told to do 4 pages of her homework per night. She did not do any on the first night. I told her then you will have to do 8 pages tomorrow. She did not do it that night either. So then all this time goes by and nothing is done because she does not feel like doing it. She is the same way with everything. She may not need to answer every question but I do feel that she needs to do at least half of them. She is capable of doing them. Therefore, I expect her to work up to her capabilities. As far as I know, all of her homework is done now. Hurray! And conferences are this week. So there should be some good discussions this week. Deb Re: Is Making Me Crazy! Posted by: "" cindyelgamal@ sbcglobal. net cindye1021 Sat Mar 8, 2008 10:32 pm (PST) Deb - While I do understand your frustration, I do think that our kidsrespond better when we ask them in a calm and pleasant tone to do something.It is really no different than expecting them to ask us something in arespectful manner. Just because they are our children doesn't mean weshouldn't be respectful to them.Re: homework - our kids see no sense in repeating something they alreadyknow how to do. My son is now in a private school and does have homeworkbut it doesn't seem excessive, e.g., today he had to do terms and names forhistory - this consisted of telling the meaning of a term or explaining whoa person was (six total) - and this took him a total of about 10 or 15minutes. He never has more than 30 minutes to an hour of homework daily andI don't think this is too much for his age (he is a junior in high school).But, when he was in public school he had shortened homework on his IEP -while the class may have had 20 math problems to do, Tyler only had to do10. I think it is also helpful that Tyler is in a very supportive andnurturing environment. When he was in the public school system he, for alack of a better way to say this, had just had it by the time he came home.He had spent the entire day in a very noisy and chaotic environment wherethere were frequent changes and he had been bombarded all day with thenoise, commotion, crowded hallways, people shoving, interactions with many,many people, and on and on. Most days Tyler came home and slept - I thinkpart of this was reparative and part of this was probably from depression.Our kids also get overwhelmed sometimes by large amounts of work or bigprojects, which may be what is experiencing. They don't know how tobreak assignments down into manageable pieces, how to start a big project,and, I think, many don't know how or when to ask for help. They then justshut down and do nothing. We had this happen with Tyler last semester inhis IPC (Integrated Physics & Chemistry) class - he had a project to do thathe had known about for weeks and the teacher had talked to the class aboutfor weeks. When questioned in class about his project he kept assuring theteacher he was working on it; when asked to produce material he would say hehad left it at home. Well, you guessed it - the day the project was dueTyler did not have his done. He finally did complete the project with helpin breaking it down into manageable pieces, help in setting up a timetableand determining how much time each part would take, etc. While many of ourkids are very bright they lack executive functioning skills and must betaught these. If has always done well in school and is strugglingnow you need to find out why. If I were you I would ask for a meeting todiscuss your concerns and ask for help in figuring out what is wrong andwhat actions need to be taken.Best wishes, It's Tax Time! Get tips, forms and advice on AOL Money Finance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Sorry, but this has what to do with LDN? :-( Email him privately as stuff this unrelated to LDN is unwelcome as per the rules formulated by the group's owner. Abri328@... wrote: > Bernie: > > Do you know where I can find a mercury free dentist? Also what is > your opinion on dental implants? > > Thanks > Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 To be honest, I have no problems dealing with a dentist as long as he has no mercury in his teeth ;-) Ingrid [low dose naltrexone] Re: (no subject)And this relates to LDN how?>> Bernie:> > Do you know where I can find a mercury free dentist? Also what is your > opinion on dental implants?> > Thanks> Tina </HTML>>========================================================================Groups related to low dose naltrexone ========================================================================mscured (224 common members) mscured?v=1 & t=ipt & ch=email & pub=groups & slk=aftr0 & sec=recg Diseases and Conditions/Multiple Sclerosis: MS Support Group - Multiple Sclerosis. - This is a...Autism_LDN (215 common members) Autism_LDN?v=1 & t=ipt & ch=email & pub=groups & slk=aftr1 & sec=recg Diseases and Conditions/Autism: This is a group for discussing and reporting treat... (165 common members) ?v=1 & t=ipt & ch=email & pub=groups & slk=aftr2 & sec=recg Diseases and Conditions/Autism: To discuss current issues related to the increasin... (136 common members) ?v=1 & t=ipt & ch=email & pub=groups & slk=aftr3 & sec=recg Diseases and Conditions/Autism: The Enzymes and Autism forum is for the discussion...chelatingkids2 (131 common members) chelatingkids2?v=1 & t=ipt & ch=email & pub=groups & slk=aftr4 & sec=recg Diseases and Conditions/Autism: This list is for parents and/or family members of ...------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2011 Report Share Posted April 9, 2011 I just joined and have a few questions. My 4mo old has a flat spot on his right side from the way he sleeps. He refuses to sleep any other way but we are really trying to work on this. Our md didn't seem too concerned. I know mild cases tend to be self-correcting but how can you tell if it's mild or more severe and needs a helmet to correct? While our md wasn't concerned, I know some md's just aren't very pro-active. If it needs to be treated, isnt it better to treat early while the skull is still pliable? I would like to post a pic so u can get some group input on the severity but don't know how to do that. Can someone help w/ this so I can get your input? Thanks! Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2011 Report Share Posted April 9, 2011 Go with your gut feeling and ask for a RX for evaluation. Cranial technologies and most other places do free evals. Your insurance is what will be the hold up...there is certain criteria you have to meet. I.e certain amount of time/months repostioning since first documented etc.If your doctor won't simply write a script for evaluation, I would then be looking for a new doctor. Remember, you are your child's strongest advocate.-- Sent from my Palm Prē 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.