Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 Andy, My son was a normal child, he actually walked earlier than other kids his age, he mumbled at a correct age and everything went smooth until I realized he was 2 1/2 yrs and not talking a word, not even the ones he had mumbled. I did take him to a neurologist and they did some blood work. That was four months ago. My next appointment with him is in Nov. I cannot tell the specifics of what he tested. Back then, I still believed my son was not autistic (i.e. in denial) and as long as the blood work results came back normal as they were, that was all I needed to hear. I'll have to call him tomorrow to get the specifics. Thanks so much. Edna andrewhallcutler <AndyCutler@...> wrote: If at all possible get a hair element profile. See /files/HOW_TO_hair_test for what it means and how to get one if you don't have a cooperative doctor. The biggest diet intervention is to get him on organic and natural foods. Beyond that there are a wide variety of diets and which one he needs can take a while to sort out. Talk about him more and people can help you do that. Diets to consider are: gluten free, casein free, Feingold, or specific carbohydrate. There are many many many more choices, but these are 4 popular ones to start with. Also did he EVER talk? Did he have normal development early on and lose it sometime in the second year? Did you have any kind of mainstream medical or neurological work-up for him? Andy . . . . . .. . . . . . . . . > > > My child has just been diagnosed with autism. He's 4 yrs of age and > non-verbal.I had him immediately after college and nothing could have > prepared me for this. I cannot stress enough how fine I thought > things were. Good education, good job, first baby and a loving > partner then one day my life changed forever. I have since opted to > be a stay-at-home mom.I am one of those people who had not heard of > autism until it struck me and for a while I thought I would not live > again. I met a mother yesterday at a theraphy class and she refered > me to your group. I've been reading the posts and I cannot tell you > how encouraging it is to hear what others say. My son is not on > wheat/dairy free meals. I've read a lot of posts on supplements any > suggestions on what I could start him on?. I hope to hear from you > all. > > Edna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 Anabelle, Your English is very very good. If I can understand it, just know that you are safe... No! I dont speak spanish. Yes! I will have to arrange for the tests, I live in Texas, may be I'll have to find some closer place to do the tests. You've been very helpful. Thank you so much. Edna anabelle sheinfeld <ana_shein@...> wrote: Hi Edna, well there is a urinary test for peptides of gluten and casein in urine, called gluteomorphine and caseomorphine, if they are elevated, your son is not digesting well gluten and casein so he must be on a Gf'Cf diet. This Gluteomorphine and caseomorphine act like opioids in the brain, so they can produce a lot of the symptoms that we see as autistic. I did this test at Great Plain laboratories one year ago. www.greatplainlaboratories.com Edna do you speak spanish? Excuse my terrible english.. Anabelle. Edna <ednapascal@...> wrote: Anabelle, Thank you so much for the information. Wow!, but I'm ready to do whatever it takes. Now! my son doesn't seem to have any major gastro- problems e.g diarhea, is he still a good candidate for GF-CF diet? Where can I get more information about GF-CF Diet? Thanks Edna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 In a message dated 9/29/2003 9:43:13 AM Eastern Standard Time, christiterry@... writes: > Hi everyone. I've just joined the list and I am looking forward to > learning > new things about AS and how to help my 13 year old son who was diagnosed > last summer. I'm " replying all " to an e-mail posting and am not sure how to > properly post messages, etc. Would someone please be kind enough to point > me in the right direction? Thank you very much! > welcome Christy you did it correctly just hit reply when you want to > send a message. I also have a 13 y/o son with AS welcome. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 > me to your group. I've been reading the posts and I cannot tell you > how encouraging it is to hear what others say. My son is not on > wheat/dairy free meals. I've read a lot of posts on supplements any > suggestions on what I could start him on?. You can start by reading my Recovery page, it gives lots of ideas on things which have begun the recovery of many children http://www.danasview.net/recover.htm My biomedical page http://www.danasview.net/parent3.htm Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 If you had rather try enzymes instead of the GFCF diet, you may want to check out the @groups list also. Many parents have seen huge success with the enzymes. Jennfer Ruston, Louisiana [ ] NEW MEMBER My child has just been diagnosed with autism. He's 4 yrs of age and non-verbal.I had him immediately after college and nothing could have prepared me for this. I cannot stress enough how fine I thought things were. Good education, good job, first baby and a loving partner then one day my life changed forever. I have since opted to be a stay-at-home mom.I am one of those people who had not heard of autism until it struck me and for a while I thought I would not live again. I met a mother yesterday at a theraphy class and she refered me to your group. I've been reading the posts and I cannot tell you how encouraging it is to hear what others say. My son is not on wheat/dairy free meals. I've read a lot of posts on supplements any suggestions on what I could start him on?. I hope to hear from you all. Edna ======================================================= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 Hi, Christi, and welcome! My son is 15 now and just started high school! Lots to learn on this list. If you want to reply to this post (if you are using Outlook, anyway) you just click on reply. If you want to make a post on a fresh topic, use the address listed for Post Message that's automatically added to the bottom of each post. I put all the lists' posting addresses in my address book. It makes life easier. When you send a post to the list address, it is automatically sent to everyone on the list. Some lists are set up differently, though, so beware if they're not . If you're subscribed to more than one group, you will find it handy to create folders within your inbox, one for each group, and set up your message rules to sort the messages into the folders for each group. That way, it's a lot easier to follow conversations within a group and it keeps your inbox clear for non-group mail. If your email program keeps a copy of all sent messages, you don't need a copy of the post from the list. You can set up your inbox assistant or message rules to delete any posts that you receive from a list that were posted by yourself. Some lists offer this option also. Hope this has been helpful! / 4makelas@... Way, Way Up in Northern Ontario ----- Original Message ----- From: " Christi Terry " <christiterry@...> > Hi everyone. I've just joined the list and I am looking forward to learning > new things about AS and how to help my 13 year old son who was diagnosed > last summer. I'm " replying all " to an e-mail posting and am not sure how to > properly post messages, etc. Would someone please be kind enough to point > me in the right direction? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 Hi : Thank you and one more question: Is there any way to get these posts in a digest form instead of single e-mails? Thanks again, Christi Re: ( ) New Member In a message dated 9/29/2003 9:43:13 AM Eastern Standard Time, christiterry@... writes: > Hi everyone. I've just joined the list and I am looking forward to > learning > new things about AS and how to help my 13 year old son who was diagnosed > last summer. I'm " replying all " to an e-mail posting and am not sure how to > properly post messages, etc. Would someone please be kind enough to point > me in the right direction? Thank you very much! > welcome Christy you did it correctly just hit reply when you want to > send a message. I also have a 13 y/o son with AS welcome. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 The most important thing I can stress is keeping a diary of behaviors, foods eaten and supplements and therapies given (this will allow you to track the benefit over time of various interventions). We started a diary 1/1/03 with the Feingold diet, then moved onto enzymes, then dropped enzymes and startef GFCF, varied supplements over time etc..... the diary has been indispensible! OAK jennifer thompson <autism_mercurylist@...> wrote: If you had rather try enzymes instead of the GFCF diet, you may want to check out the @groups list also. Many parents have seen huge success with the enzymes. Jennfer Ruston, Louisiana [ ] NEW MEMBER My child has just been diagnosed with autism. He's 4 yrs of age and non-verbal.I had him immediately after college and nothing could have prepared me for this. I cannot stress enough how fine I thought things were. Good education, good job, first baby and a loving partner then one day my life changed forever. I have since opted to be a stay-at-home mom.I am one of those people who had not heard of autism until it struck me and for a while I thought I would not live again. I met a mother yesterday at a theraphy class and she refered me to your group. I've been reading the posts and I cannot tell you how encouraging it is to hear what others say. My son is not on wheat/dairy free meals. I've read a lot of posts on supplements any suggestions on what I could start him on?. I hope to hear from you all. Edna ======================================================= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 Hi Edna-- one of the first things I would do is post your state and general location (north/south/etc) to see if anyone has the name of someone in the area that can help you, should you run into needing help. Many of the things can be tried without a doctor and there are some things that you may want to have someone help you with. This board is a great resource. Check out the Files on the board and read through them all. I am trying to put myself in your position and figure out what would I do first... I would try enzymes-- houston nutraceuticals is the brand that many people seem to like... I would begin epsom salt baths... I would begin giving some extra magnesium... I would get a liquid mineral supplement (brainchild nutritionals has one... water oz minerals are also well liked)... I would start a probiotic to help fight yeast in the gut and be prepared to see dieoff reactions occur. I would serve him only natural/organic foods in addition to trying the enzymes. I would dress him in only cotton clothing and for his bedding--white cotton sheets washed several times before letting him sleep in them. Believe it or not, my son did poorly when we had him sleeping in children's printed sheets--star wars-- with all that color and dye on them. I would do away with all colored bath soap products and use just a natural soap to wash him and as natural a shampoo as you can find. I would not do fluoride drops or fluoridated toothpaste. If he takes a multivitamin chewable I would make sure it is not artificially flavored/colored. VRP (vitamin research products) makes one that doesn't contain extra iron, which can be problematic (too much iron) for these kids. I would also remove a lot of the plastic toys from his room at night-- store them in a closed closet. Keep his room as free from volatile organic compounds (VOC's) as possible. We recently got a new wood chest of drawers for our son and it was offgassing badly... Ethan's ears went back to being very red at night. Just got rid of it and he's doing fine in the red-ears department. Same thing with his plastic tubs of toys--when we don't clean them up and put them in the closet at night, I can walk into his room and it has this " smell " about it-- the plastics offgassing. NO flame retardant pajamas--antimony and other chemicals are bad for these kids! Down the road, consider the SCDiet (specific carbohydrate diet or selective carbohydrate diet) if enzymes alone are not enough. And of course, get a hair test done (see the Files) to see if mercury and other metals are an issue for him. That's all I can think of right now... other than stay on various autism treatment boards and just try to learn as much as possible. At first, most of it doesn't make sense but eventually all the terms will be like second nature to you. If you have questions about anything I said, just email me privately maryandphilip@... W > My child has just been diagnosed with autism. He's 4 yrs of age and > non-verbal.I had him immediately after college and nothing could have > prepared me for this. I cannot stress enough how fine I thought > things were. Good education, good job, first baby and a loving > partner then one day my life changed forever. I have since opted to > be a stay-at-home mom.I am one of those people who had not heard of > autism until it struck me and for a while I thought I would not live > again. I met a mother yesterday at a theraphy class and she refered > me to your group. I've been reading the posts and I cannot tell you > how encouraging it is to hear what others say. My son is not on > wheat/dairy free meals. I've read a lot of posts on supplements any > suggestions on what I could start him on?. I hope to hear from you > all. > > Edna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 In a message dated 9/29/2003 7:14:28 PM Eastern Standard Time, christiterry@... writes: > Thank you and one more question: Is there any way to get these posts in a > digest form instead of single e-mails? > Help I don't know that answer but I think you can by changing your e mail status but I am computer illeterate. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 Go to your www.. Sign in. Go to my groups. I think it's edit. There's a place there where you can choose individual emails, digest, no mail etc. / 4makelas@... Way, Way Up in Northern Ontario ----- Original Message ----- From: " Christi Terry " <christiterry@...> Is there any way to get these posts in a > digest form instead of single e-mails? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2003 Report Share Posted September 30, 2003 Welcome! I always come directly to our web site. I hit messages. Then expand. And then reply if I have something to add. This works best for me. I've never done it from my email account. This board stays so busy my account would go beserck! a > Hi everyone. I've just joined the list and I am looking forward to learning > new things about AS and how to help my 13 year old son who was diagnosed > last summer. I'm " replying all " to an e-mail posting and am not sure how to > properly post messages, etc. Would someone please be kind enough to point > me in the right direction? Thank you very much! > > Christi in Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2003 Report Share Posted September 30, 2003 Hi Christi! I'm in Ohio too. You simply send your email to " " and it will get sent to everyone subscribed. This is how we post. When you want to reply, copy and paste the part you are replying to first so we know what you are replying to. Then send it to the same place. Welcome! Roxanna > Hi everyone. I've just joined the list and I am looking forward to learning > new things about AS and how to help my 13 year old son who was diagnosed > last summer. I'm " replying all " to an e-mail posting and am not sure how to > properly post messages, etc. Would someone please be kind enough to point > me in the right direction? Thank you very much! > > Christi in Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2003 Report Share Posted September 30, 2003 A BIG THANK YOU to all of you who gave me direction on posting. It is so much appreciated. I have been reading a lot and starting to learn some things. Hopefully, I can get my son the help he needs. We are currently having him evaluated through the school (the doctor's evaluation was over a year ago and they need it to be more current) through an MFE. He is currently taking Adderal although I am not sure this is helping much. This past Sunday he had a melt-down and disappeared for over 2 hours. I was a basket case. He's never done that before! Thankfully, we found him at my Mom's house all about 6 miles away all disoriented. He is not an agressive or mean child, in fact he is quite opposite. Needless to say I've hardly let him out of my sight. Well, again, thank you so much for your help. I look forward to the postings! Christi *************************************************** From: " madassmom " <kneeleee@a...> Date: Tue Sep 30, 2003 12:28 pm Subject: Re: ( ) New Member Hi Christi! I'm in Ohio too. You simply send your email to " " and it will get sent to everyone subscribed. This is how we post. When you want to reply, copy and paste the part you are replying to first so we know what you are replying to. Then send it to the same place. Welcome! Roxanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2003 Report Share Posted October 2, 2003 This > past Sunday he had a melt-down and disappeared for over 2 hours. I was a > basket case. He's never done that before! Thankfully, we found him at my > Mom's house all about 6 miles away all disoriented. He is not an agressive > or mean child, in fact he is quite opposite. Needless to say I've hardly > let him out of my sight. Well, again, thank you so much for your help. I > look forward to the postings! > > Christi Christi, Yikes!!! Why did he have a meltdown? Did he run all the way to your mom's on his own? Roxanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2003 Report Share Posted October 2, 2003 ----- This > past Sunday he had a melt-down and disappeared for over 2 hours. I was a> basket case. He's never done that before! Thankfully, we found him at my> Mom's house all about 6 miles away all disoriented. He is not an agressive> or mean child, in fact he is quite opposite. Needless to say I've hardly> let him out of my sight. Well, again, thank you so much for your help. I > look forward to the postings! > > Christi Christi, Yikes!!! Why did he have a meltdown? Did he run all the way to your mom's on his own? Roxanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2003 Report Share Posted October 8, 2003 There are many anti-depressants out there. I took wellbutrin which has the added plus of being a mild stimulant which helped me through the fatigue I suffered on treatment. The biopsy WILL tell you if you have cirrhosis. There is a stage of progression which basically is mild inflammation to more serious inflammation, then differing stages of fibrosis, which at a certain point is considered cirrhosis. The liver is a marvelous organ which even at advanced stages of cirrhosis can do the job it needs to do to keep you healthy. The point is to stop the progression wherever it is. The biopsy is not bad. I thought it was fairly painful the first day, nothing worse than I've experienced before. They keep you for several hours afterwards to make sure there are no complications, then send you home. There will probably be some discomfort the next day, but not too bad and then it's over. I am a type 1b, I believe 1a or 1b have about equal success with the treatment, they are harder to treat than other genotypes and therefore have a longer therapy (48 weeks is standard) I was successful in my treatment and am considered a long-term responder. You will have your hands full with the kids, so warn your husband he will have to suck up and take a bigger role in their care. A supportive spouse can mean a world of difference. The treatment is no picnic, but it's really not that bad. I found it very difficult the first couple of weeks, but it mellowed out as my body adjusted to the meds. The "flu-like" symtoms would come and go and I was fatigued througout the treatment. I think it would help if you try to to light exercise throughout (I didn't), and keep yourself hydrated. Very, very important. Everybody here, I believe will echo the importance of drinking lots of water. DON'T FEEL GUILTY!! You have a disease that many of us unfortunately have. Rarely have our family members been infected. Neither my spouse or ex-spouse or son got the virus. My dr suggested that my wife be tested and if negative, we could continue our sex-life without taking any additional precautions. Good luck, we were all terrified when we found out and we are here to help you understand and go through this. -dz- <chrissea10@...> wrote: Hello Everyone,I'm new and just checking out all of the groups here. I've been reading some past posts and you seem like a fun bunch. But to tell you the truth, I am scared to death. I was just diagnosed a little over a month ago, and am scheduling my biopsy now. I have a husband and 2 children, my daughter is 7 and my new baby boy is only 5 months old. All have tested negative with the exception of my boy. They say it is very likely that my antibodies are still in his system. So I am praying and trying to live with the guilt.I am terrified to get the biopsy and more to get the results. Would I know if it were to the point of cirrhosis? People keep telling me I would look sick, but I know better.Anyway, reading about the tx is terrifying as I feel like I MUST get into a better frame of mind before I start because I'm pretty sure I am getting very depressed. I have tried Lexapro (forget it) and Zoloft. They all make me feel really 'weird'. Any suggestions?I am genotype 1, not sure if it's a or b. Have those of you that are type 1 had any success? I am usually a pretty strong person and have the tendancy to fight any bad situation that comes my way, but with this I can't find the person I was a month ago. I need to get out of this rut.Thank you all for listening and I appreciate any advice or opinions.ps-also a Nascar fan.Chrissy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2003 Report Share Posted October 12, 2003 Welcome June and Gail (and other new folks), I am by no means " old hat " with this group or this disease. I have only had it for two years so I think that makes me a baby of the group. I had one question but before I ask it I just wanted to give a warm hello to all....Gail, don't apologize for sounding " down. " I think that this is a safe place to sound, feel and be down. There are many hands here to help hold you up. At least that has been my experience. Okay...question: I have severe pain in my lower back, left of the side of my spine spreading out to my hip. It's been really bad in the past two weeks but frankly, I'm sick of x-rays because they never and I mean NEVER show anything. I will talk to my doc about this of course but I wanted to know if anyone has any thoughts about this. If feels like it is right above and all around the bone on the upper part of my " butt. " Pardon the expression and pardon my stupidity re: naming parts of the body. I have no idea what this part is. Thanks so much.... best, [Editor's Note: Hi, : I recently read some articles dealing with x-rays results, particularly where the patient reports reliable discomfort yet the x-rays do not show consistent damage. With regard to the lower back pain, spreading to hip: It's in the area of the S.I. joints (and then, there's ankylosing spondilitis as well. Does it hurt (your butt) to sit for any length of time? Does you back wake you up during the night? What has the doc had to say about these symptoms? Fran D.] > Hi > My name is June and I live on thje Central Coast of New Jersey. > I am 52 and a horticulturist. > I was diagnosed in 1999 with PA. > I went through a series of doctors and tests(Lymes) and finally > found a great rheumatoligist. > I was first diagnosed with AS then Reiters. I would fall in the 4 to > 5 in the web med DX. > I have been on a alot of meds > I was on asulfadine entabs,minocin),vioxx,arava,and norco fo a few > years. > I am now on arava,voixx(50mg),minocin(100mg 2xd),enbrel and norco(4 > 10/325) . I also use muscle relaxers at times for my neck and jaw > inflammation and sonata and benedryl at times also when I cannot > sleep. > I occasionally get shots in neck and shoulder. I refuse to take > prednisone orally. If you can believe it I actually feel worse > I take msm,flax oil,fish oil, and a few more supplements > When I can I use pool therapy and yoga. > I have been on disability since 1999 and will do some consulting but > I really find it exhilirating,exhausting and eventually very painful > if I try to do what I use to. > Morning was my best time...now it can be the most difficult. > I think I notice a bit of difference on enbrel but Im not sure since > the first month I did notice less stiffness but this month Im back > to the same stuff. > I have continued minocin since it really seems to help me with my > hands and feet pain and stiffness. > I also notice that when I have had a sinus infection and pyt on > biaxin I have no pain or stiffness at all in my hands. > I was happy to find this group and registered a while ago when I > started Enbrel but I wasnt able to reply so I had to reregister in > . > I have found this group to be friendly and intelligent from the > posts I have read. > I feel so isolated at times because it is hard for most people to > understand. > One minute I cane feel pretty normal and the next hour I have fevers > and am in bed for days in a flare. So it is hard to make any type of > commitment > My younger son moved back in my home this fall because I was really > stuggling with maintenance and bills. My husband died of leukemia 10 > years ago and my parents are both dead so I only have the support of > my two sons and my best friend in Houston. > I think I will eventually move to Houston and sell the house since > it getting harder for me to get around. > I use to be so physical and up at the crack of dawn and loved to be > outside all day. I also was a handbuilder in pottery but I have been > slowly trying to find my new life with this disease. > I know that this is not new to any of you and that I can get the > support I need from this group. > Sorry if this is long but I didnt want to be a lurker anymore > > [Editor's Note: Welcome, Junie! I hope you will come to feel you not only have the support of your two sons and your best friend, but also this caring group. As you note, understanding (PA) is a little hard to come by, but you can count on the folks here (to be able to do so). > We look forward to your contributions. > > D.] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2003 Report Share Posted October 12, 2003 I too have had pain in the back to the side where the hip (pelvis) bone goes out from the back. I think it is inflammation where the muscles attach to the bone. No doc has said anything about this. When I have better control of symptoms it goes away so I think it is PA. Would be curious if you find out anything. Anne [ ] Re: New member Welcome June and Gail (and other new folks), I am by no means " old hat " with this group or this disease. I have only had it for two years so I think that makes me a baby of the group. I had one question but before I ask it I just wanted to give a warm hello to all....Gail, don't apologize for sounding " down. " I think that this is a safe place to sound, feel and be down. There are many hands here to help hold you up. At least that has been my experience. Okay...question: I have severe pain in my lower back, left of the side of my spine spreading out to my hip. It's been really bad in the past two weeks but frankly, I'm sick of x-rays because they never and I mean NEVER show anything. I will talk to my doc about this of course but I wanted to know if anyone has any thoughts about this. If feels like it is right above and all around the bone on the upper part of my " butt. " Pardon the expression and pardon my stupidity re: naming parts of the body. I have no idea what this part is. Thanks so much.... best, [Editor's Note: Hi, : I recently read some articles dealing with x-rays results, particularly where the patient reports reliable discomfort yet the x-rays do not show consistent damage. With regard to the lower back pain, spreading to hip: It's in the area of the S.I. joints (and then, there's ankylosing spondilitis as well. Does it hurt (your butt) to sit for any length of time? Does you back wake you up during the night? What has the doc had to say about these symptoms? Fran D.] > Hi > My name is June and I live on thje Central Coast of New Jersey. > I am 52 and a horticulturist. > I was diagnosed in 1999 with PA. > I went through a series of doctors and tests(Lymes) and finally > found a great rheumatoligist. > I was first diagnosed with AS then Reiters. I would fall in the 4 to > 5 in the web med DX. > I have been on a alot of meds > I was on asulfadine entabs,minocin),vioxx,arava,and norco fo a few > years. > I am now on arava,voixx(50mg),minocin(100mg 2xd),enbrel and norco(4 > 10/325) . I also use muscle relaxers at times for my neck and jaw > inflammation and sonata and benedryl at times also when I cannot > sleep. > I occasionally get shots in neck and shoulder. I refuse to take > prednisone orally. If you can believe it I actually feel worse > I take msm,flax oil,fish oil, and a few more supplements > When I can I use pool therapy and yoga. > I have been on disability since 1999 and will do some consulting but > I really find it exhilirating,exhausting and eventually very painful > if I try to do what I use to. > Morning was my best time...now it can be the most difficult. > I think I notice a bit of difference on enbrel but Im not sure since > the first month I did notice less stiffness but this month Im back > to the same stuff. > I have continued minocin since it really seems to help me with my > hands and feet pain and stiffness. > I also notice that when I have had a sinus infection and pyt on > biaxin I have no pain or stiffness at all in my hands. > I was happy to find this group and registered a while ago when I > started Enbrel but I wasnt able to reply so I had to reregister in > . > I have found this group to be friendly and intelligent from the > posts I have read. > I feel so isolated at times because it is hard for most people to > understand. > One minute I cane feel pretty normal and the next hour I have fevers > and am in bed for days in a flare. So it is hard to make any type of > commitment > My younger son moved back in my home this fall because I was really > stuggling with maintenance and bills. My husband died of leukemia 10 > years ago and my parents are both dead so I only have the support of > my two sons and my best friend in Houston. > I think I will eventually move to Houston and sell the house since > it getting harder for me to get around. > I use to be so physical and up at the crack of dawn and loved to be > outside all day. I also was a handbuilder in pottery but I have been > slowly trying to find my new life with this disease. > I know that this is not new to any of you and that I can get the > support I need from this group. > Sorry if this is long but I didnt want to be a lurker anymore > > [Editor's Note: Welcome, Junie! I hope you will come to feel you not only have the support of your two sons and your best friend, but also this caring group. As you note, understanding (PA) is a little hard to come by, but you can count on the folks here (to be able to do so). > We look forward to your contributions. > > D.] Please visit our Psoriatic Arthritis Group's informational web page at: http://www.wpunj.edu/pa/ -- created and edited by list member aka(raharris@...). Also,in August 2001,list member Jack aka Cornishpro@... began to conduct extensive research which he publishes as the " Psoriatic Arthritis Research Newsletter " , monthly in our email and digest format. Many thanks to Jack. Back issues of the newsletter are stored on our PA webpage as well as the archives of the list. Don't forget that the list archives comprise a tremendous amount of information (Over three years of messages and answers).Feel free to browse them at your convenience. LET'S HEAR FROM SOME OF YOU LURKERS out there! If you have a comment or question, chances are there is a person who has been around a while who can help you out with AT LEAST an educated guess for an answer! If not,we can steer you in the right direction with a good website to go to, Blessings and Peace, Atwood-Stack, Founder Alan , Web & List Editor Jack , Newsletter Editor Pat Bias, List Editor Ron Dotson, List Editor Orin, List Editor , List Editor and any others who help in any way (thank you!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 In a message dated 10/13/2003 8:41:10 AM Eastern Standard Time, kneeleee@... writes: My son is also part of the Yale Child Study Center study on Asperger's Syndrome. It is so detailed and time consuming, but the results will be worth it. :-) this is strange you have the same e mail address as Roxanne??? I just noticed that what happened? Anyway when is this study coming out, I would love to find out the results. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 In a message dated 10/13/2003 9:42:49 AM Eastern Standard Time, RNMOM72668@... writes: In a message dated 10/13/2003 8:41:10 AM Eastern Standard Time, kneeleee@... writes: My son is also part of the Yale Child Study Center study on Asperger's Syndrome. It is so detailed and time consuming, but the results will be worth it. :-) this is strange you have the same e mail address as Roxanne??? I just noticed that what happened? Anyway when is this study coming out, I would love to find out the results. ***, Sometimes newbies send their first email to the listowner instead of directly to the list. So I will forward it when that happens. That's why it came from my addy. Roxanna ö¿ö Autism happens... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 In a message dated 10/13/2003 10:03:39 AM Eastern Standard Time, kneeleee@... writes: Sometimes newbies send their first email to the listowner instead of directly to the list. So I will forward it when that happens. That's why it came from my addy. ok I thought there might be two roxanne's lol. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 Hi from NY! Welcome to the group! - Dallas, TX > Hi, > > My name is and I'm from upstate NY. I have a wonderful husband who > is a LCMD in the Navy, and a volunteer firefighter. We have 3 wonderful > children. is 8 1/2 and has Asperger's, like his dad. Zachary > is 5 (NT) and Kayla is 1. > > is gifted, is obsessed with space and the ocean, and of course, > has extreme difficulty with social skills. :-). We have been fighting > for inclusion and are in the process of a hearing. We have a very > detailed IEP, but I'm fighting for appropriate staff training and IEP > implementation. > > A local doctor has just started a social skills group once a week, for > our AS children and it's going great! I am so happy there are doctor's > like him around. > > My son is also part of the Yale Child Study Center study on Asperger's > Syndrome. It is so detailed and time consuming, but the results will be > worth it. :-) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 In a message dated 10/13/2003 1:31:12 PM Eastern Standard Time, RNMOM72668@... writes: ok I thought there might be two roxanne's lol. ROFL, nope. Only one of me. <GG> Roxanna ö¿ö Autism happens... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 Hi . Welcome to our group. It sounds like you know what you want and are doing what it takes to get there. I am right there with you. We have just filed a State complaint and are about to go Due Process. a Hunter PDD-nos ADHD PDD-nos > Hi, > > My name is and I'm from upstate NY. I have a wonderful husband who > is a LCMD in the Navy, and a volunteer firefighter. We have 3 wonderful > children. is 8 1/2 and has Asperger's, like his dad. Zachary > is 5 (NT) and Kayla is 1. > > is gifted, is obsessed with space and the ocean, and of course, > has extreme difficulty with social skills. :-). We have been fighting > for inclusion and are in the process of a hearing. We have a very > detailed IEP, but I'm fighting for appropriate staff training and IEP > implementation. > > A local doctor has just started a social skills group once a week, for > our AS children and it's going great! I am so happy there are doctor's > like him around. > > My son is also part of the Yale Child Study Center study on Asperger's > Syndrome. It is so detailed and time consuming, but the results will be > worth it. :-) > > > > > Quote Link to comment Share on other sites More sharing options...
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