Guest guest Posted September 14, 2010 Report Share Posted September 14, 2010 Hi !Welcome!You’re not alone!Where are you located? From: [mailto: ] On Behalf Of Sent: Tuesday, September 14, 2010 3:47 PM Subject: ( ) new and need support i have a 6yr old son that is in the process of being diagnosis of aspergers i have been battling and struggling to manage my home and breaking heart it just sees like in the last year and a half to two yearseverying has changed my baby is my miracle the child i was told i would never have came after 3 years of trying and he was perfect till about 2 - 2.5 then i started noticing he was different buti just made excuses like hes not that different, he was just special, and he would learn to deal better with others, he was on only child or i needed to do a better job parenting as they yaers went on the school years started and the problems came in flood its like i have no relationship with him any more like he dosent care at all about me unless it effects him personally we cant communicate i feel so lost the Dx was a help to understand that its not all my fault like i thought it was i just need to hear from others who are going thru the same thing there are no support groups in the area and my husband is no help he loves our son but cant handle the personal attacks and violent outbursts and often leaves to let me handle things evey day is not a fight but many of them have been i cant find what i need on the web and i am so alone i think this may help thanks and sorry so long i would love to hear the stories of other members and stratigies for handling life and any web sights that will provide help thank you so much wendy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2010 Report Share Posted September 15, 2010 Welcome to the group, . I think this is a great place to get support. My son is 13 but was diagnosed at age 3.5. We have been through a lot of stuff similar to your experience. Can you talk about the circumstances surrounding your son's outbursts and difficulties? What I mean is that it would help to know what happens right before and right after a particular behavior to know what to do about it. My favorite parenting book is called Raising Your Spirited Child. It is a small, paperback book with practical suggestions for discovering the causes of behavior. Assume there is a reason for everything and that you need to find out what that reason is. One thing that really works for me is to choose battles very carefully based on the following: If nobody is being hurt in any way (mean words or hitting, etc.), no property is being damaged and the behavior doesn't irritate me so much it makes me want to hit my child then I let it go. Well, I try to anyway. Sometimes I get muddled up and it just makes my life more stressful. I think my son in particular has figured out that I don't fight battles unless I really care about them. That means I'm more likely to be firm and to follow through on whatever it takes to help him behave better. I would also suggest Positive Discipline. There are books by Jane and there is an online group like this but it isn't on . I can get you the information for that. They have a group called Positive Discipline for Special Needs children. This is particularly useful for building a positive relationship. Don't be concerned about the length of your messages! I think a lot of us get wordy when we're trying to figure out what to do. Hugs, Miriam > > i have a 6yr old son that is in the process of being diagnosis of aspergers i have been battling and struggling to manage my home and breaking heart it just sees like in the last year and a half to two yearseverying has changed my baby is my miracle the child i was told i would never have came after 3 years of trying and he was perfect till about 2 - 2.5 then i started noticing he was different buti just made excuses like hes not that different, he was just special, and he would learn to deal better with others, he was on only child or i needed to do a better job parenting as they yaers went on the school years started and the problems came in flood its like i have no relationship with him any more like he dosent care at all about me unless it effects him personally we cant communicate i feel so lost the Dx was a help to understand that its not all my fault like i thought it was i just need to hear from others who are going thru the same thing there are no support groups in the area and my husband is no help he loves our son but cant handle the personal attacks and violent outbursts and often leaves to let me handle things evey day is not a fight but many of them have been i cant find what i need on the web and i am so alone i think this may help thanks and sorry so long i would love to hear the stories of other members and stratigies for handling life and any web sights that will provide help thank you so much wendy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 Hi ! Welcome to this wonderful site. I am a newcomer also. I was " officially " diagnosed wth sero-negative RA about two weeks ago. Two different tests were done forRA, but both came up negative! My rheumy says that @25% of people with RAdo test negative. But my ESR and other tests were very elevated. Apparently there is no fool proof way to diangnose this illness, it's like putting a puzzle together with a bunch of pieces! I'll tell you, when my rheumy told me i would start with methotrexine, and I researched it, I was scared to death too. This stuff can be highly toxic to the liver and can cause all kinds of other nasty side effects. The wonderful people on this site gave me hope. The vast majority of people on methotrexine (MTX) suffer few serious side effects. Also, your Dr. with keep track with labwork. If there's a problem, he'll do something about it right away. The fact of the matter is, it is the best medicine for RA. Do some more research, and stay with this site. The people here are very helpful and caring, many have been coping with RA for a long time. You can reallly learn alot here! Best of luck! Amy ________________________________ From: " michelle_collins@... " <michelle_collins@...> Sent: Tue, March 22, 2011 8:16:10 AM Subject: [ ] New and need support  Hi everyone, I am a 36yo mother of ds(9) and dd(5). I am currently waiting on test results to confirm RA. My doc suspects this is the case. I have had pain, swelling in wrists and elbows since mid-Jan. I have had elevated CRP and ESR but tested negative for Rh factor. Upon physical exam, doc found swelling in knuckle joints in both hands, feet as well as a nodule on my elbow. Currently I am on Celebrex which I find wears off after a few hours...although it seems to have helped with morning stiffness. My family is concerned about the DMARDS....big time! My GP told me that upon confirmation I will be on methotrexate and Plaquenil. Can anyone help ease my families fears about these meds? Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 Hi , I've been on mtx for almost 11 years now with no side effects. It's my wonder drug, it gave me my life back. When my RA presented I could do nothing, even getting off the sofa was hard. Once you wrap your head around the fact that you have RA, if you are so diagnosed, and you do your research you will find that the facts confirm that you MUST be on a DMARD or biologic, and most biologics add mtx so you might as well start with that. I know it's hard but I look at it as being a lesser of other evils out there. Good luck, in PA On Tue, Mar 22, 2011 at 8:16 AM, michelle_collins@... < michelle_collins@...> wrote: > > > Hi everyone, > I am a 36yo mother of ds(9) and dd(5). I am currently waiting on test > results to confirm RA. My doc suspects this is the case. I have had pain, > swelling in wrists and elbows since mid-Jan. I have had elevated CRP and ESR > but tested negative for Rh factor. Upon physical exam, doc found swelling in > knuckle joints in both hands, feet as well as a nodule on my elbow. > Currently I am on Celebrex which I find wears off after a few > hours...although it seems to have helped with morning stiffness. My family > is concerned about the DMARDS....big time! My GP told me that upon > confirmation I will be on methotrexate and Plaquenil. Can anyone help ease > my families fears about these meds? > Thank you, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 Hi, . Welcome. Although many people don't like the idea of taking medications, if you do have RA, you and your family should be more concerned about what could result if your RA is untreated or undertreated. Your GP has the right idea. It has become increasingly clear that early and aggressive treatment of RA is very important, not only to prevent permanent damage from occurring, but also to prevent the immune system from become more abnormal and destructive. I urge you and your family members to Google " rheumatoid arthritis " with " window of opportunity. " It is possible that there is a unique chance in early RA to very positively influence the disease course and your outcome with DMARDs. Annette, another member of our group, recently posted a link to the following video: http://www2.webcastcanada.ca/arthritis/archives/nov25-2010/ Please watch the presentation and pass the link on to those in your family who have concerns about DMARDs. Not an MD On Tue, Mar 22, 2011 at 7:16 AM, michelle_collins@... <michelle_collins@...> wrote: > Hi everyone, > I am a 36yo mother of ds(9) and dd(5). I am currently waiting on test results to confirm RA. My doc suspects this is the case. I have had pain, swelling in wrists and elbows since mid-Jan. I have had elevated CRP and ESR but tested negative for Rh factor. Upon physical exam, doc found swelling in knuckle joints in both hands, feet as well as a nodule on my elbow. Currently I am on Celebrex which I find wears off after a few hours...although it seems to have helped with morning stiffness. My family is concerned about the DMARDS....big time! My GP told me that upon confirmation I will be on methotrexate and Plaquenil. Can anyone help ease my families fears about these meds? > Thank you, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 Dear : I was diagnosed in Feb. and basically your post is very much how I felt. I am convinced, however, that I need a DMARD to slow down the progression of the disease, after reading up on it some. My Dr. tried Sulfasalezene, but I had a bad reaction after a month. Now, I have been on Plaquinel for almost 2 weeks. It can take up to 3 months to see full results. If I am not pain/stiffness free by then, she has already said she will either add Methotrexate to it (if it helps some) or just put me on the methotrexate. While I am scared of that, I have learned so much reading and listening here, that I know it is better then not doing something to prevent the disease from getting worse. I have no side effects at all from the Plaquinel. Just my thoughts. Theresa --- In , " michelle_collins@... " <michelle_collins@...> wrote: > > Hi everyone, > I am a 36yo mother of ds(9) and dd(5). I am currently waiting on test results to confirm RA. My doc suspects this is the case. I have had pain, swelling in wrists and elbows since mid-Jan. I have had elevated CRP and ESR but tested negative for Rh factor. Upon physical exam, doc found swelling in knuckle joints in both hands, feet as well as a nodule on my elbow. Currently I am on Celebrex which I find wears off after a few hours...although it seems to have helped with morning stiffness. My family is concerned about the DMARDS....big time! My GP told me that upon confirmation I will be on methotrexate and Plaquenil. Can anyone help ease my families fears about these meds? > Thank you, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 Hi - Welcome home. Pull up a chair by the fire. I was scared too about all of the side effects. I think most of us were. I tell you this- I would NOT give up my MTX for anything. Without it, my pain levels are horrid. In the beginning I dithered about it, but came to the conclusion that the worst case senario for me would be to have a lot of pain-filled years. I'd rather have the relief for less years if faced with that choice. The % liklihood that you will have any issues is pretty small I believe. I recently had to come off of my MTX for a surgery. BOY oh BOY did I know how much it had been helping me then! I can't speak to the Plaquinel, but many people take it in here and will tell you about their experience I am sure. Read all you can about the disease and get feedback. But just remember that your reaction to various meds will be unique to you. We are all different which is why there are different meds. Good luck and welcome! in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 In a message dated 3/22/2011 11:17:23 A.M. Central Daylight Time, phylliscrubaugh@... writes: I was scared too about all of the side effects. I think most of us were. I tell you this- I would NOT give up my MTX for anything. Without it, my pain levels are horrid. > I think we are all scared of side-effects. My bigger fear, however is of fingers going off an angles and other disfigurements. The medication may prevent that from happening. (I hope so) dd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2011 Report Share Posted March 23, 2011 Hi ! I am a new member as well. 34yo single mom of two and diagnosed about two months ago, my rh factor was also negative. I'm currently on plaquenil (my liver numbers are slightly high so can't go on anything stronger yet while they're checking the liver). So far no serious side effects, tho I don't feel like it has done anything for me yet. It's been about 6 weeks on it. This group is wonderful and can give you much information on the many drugs and treatments for RA. Jen singlemomx2 --- In , " michelle_collins@... " <michelle_collins@...> wrote: > > Hi everyone, > I am a 36yo mother of ds(9) and dd(5). I am currently waiting on test results to confirm RA. My doc suspects this is the case. I have had pain, swelling in wrists and elbows since mid-Jan. I have had elevated CRP and ESR but tested negative for Rh factor. Upon physical exam, doc found swelling in knuckle joints in both hands, feet as well as a nodule on my elbow. Currently I am on Celebrex which I find wears off after a few hours...although it seems to have helped with morning stiffness. My family is concerned about the DMARDS....big time! My GP told me that upon confirmation I will be on methotrexate and Plaquenil. Can anyone help ease my families fears about these meds? > Thank you, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2011 Report Share Posted March 23, 2011 Hi & Amy, I've been taking Methrotrexate for a year and half now. It's a wonder drug and have prevent me from beings tiff and able to do the things I want to do. I was scare of taking MTX but my Dr always do blood test every 3-4 months and I don't have any side effect from it. You can go to www.webmd.com or www.medline.com and look up the medication. I'm also taking Folic Acid 5 tabs (400mg) every day. I don't like the fact my hair is thin (could run in my family) but it's help. Have to do the pros and cons on this and talk to your Dr about it. Can go to www.arthritis.org which is the Arthritis Foundation and they have info about all medications DMARDS, Biologics, and etc. I hope this help. \ Christa Quote Link to comment Share on other sites More sharing options...
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