Guest guest Posted July 9, 1999 Report Share Posted July 9, 1999 Was it tough for Holly to learn to walk, etc., as she was probably in pain? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 1999 Report Share Posted July 9, 1999 Holly could not even sit up on her own till her first birthday, as she started to feel better around march she did everything, so she wasn't very late walking actually. It was a very difficult time for us, it is so hard to see someone that little in such pain. One of the most difficult times, that stands out most in my mind, was the night i decided to let her sleep downstairs in her own room, and when i went to get her in the morning, she was crying as she was laying on her arm and couldn't move at all to get it out from under her, i felt so bad, that she never slept alone in her room again for a very long time. I don't know as it was the best choice i ever made, as now she is almost 6 and still sleeps with us most nights, even if she goes to bed in her own bed, it isn't long before she is in with us. but for so long if she wasn't in bed with us, then we weren't getting any sleep, as you all well know a child with a temp of around 106 is not something you just let go. I wasn't comfortable unless she was in reach at all times. Talk to you later, n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 1999 Report Share Posted July 9, 1999 I was reading your post and I can only say I know how you feel( about the bed thing ) my daughter is 3 and she sleeps in my room in a toddler bed my husband wont let me make her go to her on room he wants her where he can reach her (LOL) >From: Ajaomom@... >Reply- onelist > onelist >Subject: Re: [ ] hello >Date: Fri, 9 Jul 1999 01:46:11 EDT >MIME-Version: 1.0 >From errors-80038-792-shancna Thu Jul 08 22:46:34 1999 >Received: from [209.207.164.237] by hotmail.com (1.5) with SMTP id >MHotMailB94ED7BA00DFD82197B0D1CFA4ED11070; Thu Jul 08 22:46:34 1999 >Received: (qmail 31857 invoked by alias); 9 Jul 1999 05:46:31 -0000 >Received: (qmail 31844 invoked from network); 9 Jul 1999 05:46:31 -0000 >Received: from unknown (HELO imo17.mx.aol.com) (198.81.17.7) by >pop.onelist.com with SMTP; 9 Jul 1999 05:46:31 -0000 >Received: from Ajaomom@... by imo17.mx.aol.com (IMOv20.21) id >hBYHa12406 (4457) for < onelist>; Fri, 9 Jul 1999 01:46:11 >-0400 (EDT) >Message-ID: <cbb6abf7.24b6e6a3@...> >X-Mailer: AOL 4.0 for Windows 95 sub 13 >Mailing-List: list onelist; contact -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >From: Ajaomom@... > >Holly could not even sit up on her own till her first birthday, as she >started to feel better around march she did everything, so she wasn't very >late walking actually. It was a very difficult time for us, it is so hard >to >see someone that little in such pain. One of the most difficult times, that >stands out most in my mind, was the night i decided to let her sleep >downstairs in her own room, and when i went to get her in the morning, she >was crying as she was laying on her arm and couldn't move at all to get it >out from under her, i felt so bad, that she never slept alone in her room >again for a very long time. I don't know as it was the best choice i ever >made, as now she is almost 6 and still sleeps with us most nights, even if >she goes to bed in her own bed, it isn't long before she is in with us. but >for so long if she wasn't in bed with us, then we weren't getting any >sleep, >as you all well know a child with a temp of around 106 is not something you >just let go. I wasn't comfortable unless she was in reach at all times. >Talk >to you later, n > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 1999 Report Share Posted July 9, 1999 your hubby and i would get along fine, lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 1999 Report Share Posted July 9, 1999 n, When is flaring we too like to have her right there to monitor during the night. My husband just moves out and she moves in. I can only be thankful that she was not younger when this came on for she wouldn't have a clue as to what is going on. How is your daughter now with pain as she has grown up with it? Is she chubby from the steroids? And small for her age? How is her temperament, is it different form other kids her age? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 1999 Report Share Posted July 10, 1999 Okay lets see, she is not chubby from the steroids nor very small for her age, fortunately she has not been on steroids in huge amounts as some of the other children on the list. Holly has a very cyclical disease she does well for about 6 months and then flares for about 6 months, September is never a good time for her. When she flares, she doesn't grow much. Holly has always dealt with the pain fairly well, she has a huge understanding for her disease. She is very mature for her age, my grandmother likes to say she has an old soul. her temperament is very good, she is very grown up in all she does. n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 <!doctype html public " -//w3c//dtd html 4.0 transitional//en " > <html> Hi n, <p>That story was so sad, about when Holly was sleeping on her arm :-( & nbsp; I guess we've all had moments like that, when our children are suffering. It's so hard to see them in pain and not know how to help immediately. I bought a little plastic bell that was easy to ring and very loud. If Josh needed me in the night time or anytime, I could hear that bell whereever I was and would go running. Then, his sister got a little jealous and wanted a bell of her own. So, I caved in and got her one and they both had me running around for a while. Fortunately, his flare didn't last too long and I was able to put both bells away until the next time we needed them. They sort of took advantage a bit but were reassured to know that I'd be there as soon as they needed. <p>One night a few months ago, Josh woke up in the night not being able to breathe too good. He was crying and hot and had a lot of pain in his chest. We stayed up for most of the night together. Times like that, he knows he can always come into my room. My daughter, if she wakes up to use the bathroom, often wanders into my room instead of back into her own. Not so much lately, though. I figure it's part of growing up and will happen less frequently when they're college age :-) <p>Take care, <br>Georgina <p>Ajaomom@... wrote: <blockquote TYPE=CITE>From: Ajaomom@... <p>Holly could not even sit up on her own till her first birthday, as she <br>started to feel better around march she did everything, so she wasn't very <br>late walking actually. It was a very difficult time for us, it is so hard to <br>see someone that little in such pain. One of the most difficult times, that <br>stands out most in my mind, was the night i decided to let her sleep <br>downstairs in her own room, and when i went to get her in the morning, she <br>was crying as she was laying on her arm and couldn't move at all to get it <br>out from under her, i felt so bad, that she never slept alone in her room <br>again for a very long time. I don't know as it was the best choice i ever <br>made, as now she is almost 6 and still sleeps with us most nights, even if <br>she goes to bed in her own bed, it isn't long before she is in with us. but <br>for so long if she wasn't in bed with us, then we weren't getting any sleep, <br>as you all well know a child with a temp of around 106 is not something you <br>just let go. I wasn't comfortable unless she was in reach at all times. Talk <br>to you later, n</blockquote> </html> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 <!doctype html public " -//w3c//dtd html 4.0 transitional//en " > <html> Hi , <p>Wow, I can't believe they're already thinking of trying Enbrel for your daughter. I'm so glad it's available as an option. Please keep us all updated on how it goes, if they do decide to try it. From some of the things I've read, I think they've had even better results when they use Enbrel right along with methotrexate. You're right, they do usually want to stop using it when there's an infection. I guess could try taking NSAID's if she was really feeling sore during an off-period. Yes, the cost is definitely a factor, too. That's a very expensive medicine. I hope your insurance will pay for a big portion of it, at least. <p>So, is down to only 9 mgs of prednisone? That's terrific! I'm sorry to hear that she's having some break through pains but it shouldn't last too long. Maybe a week or two? What's the highest amount of pred she's been on? Thanks for your encouragement. I really hope that maybe this time we will be more successful in lowering Josh's pred, too. Only time will tell. I've definitely learned not to rush it all. Take each taper very slowly and hopefully, there will be better results. We'll see :-) <p>The doctor's always trying to reassure me, saying that long term use is subjective. Some people are on it daily for 20 years! It was (is?) the one drug that has been most effective in controlling Josh's inflammation, over the long haul. But it's definitely a catch-22. I know what you mean about wanting your daughter off it ASAP! <p>Take care, <br>Georgina <p>SHANNON MARTINO wrote: <blockquote TYPE=CITE>From: " SHANNON MARTINO " & lt;shancna@...> <p>Georgina if my daughter is not handling the decrease of the pedie pred thius <br>time she will be coming of th metho and start on enbrle I am leary only <br>because if she gets any thing we wii have to stope until she is better ,and <br>it costs about 1,ooo a month and my insurance does not cover it all <br>is now down to 9 mg but she is starting to have some brake threw pain so we <br>have started the Motrin again ,so I hope to cotinue I hope that you have <br>better luck with your son!!! this time this is only our thierd try to get <br>here down you have had more tries then that by the sounds of it I am very <br>concerned about 's long term effects of pediepred I want her off <br>a.s.a.p!! well good luck & nbsp; & nbsp; & nbsp; & amp; </blockquote> </html> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 <!doctype html public " -//w3c//dtd html 4.0 transitional//en " > <html> Hi, <p>n, it's strange that you said that your daughter is an 'old soul'. People have said that about my son Josh, too. Like he's been here before and knows how to cope with things well. More mature for his years and a wonderful temperament ... most times :-) <p>Josh is very short for his age. And when he's on high dose prednisone (over 15mgs) he does get very chubby. Fortunately, he slims down as the dose gets lower. <p>~Georgina <p>Ajaomom@... wrote: <blockquote TYPE=CITE>From: Ajaomom@... <p>Okay lets see, she is not chubby from the steroids nor very small for her <br>age, fortunately she has not been on steroids in huge amounts as some of the <br>other children on the list. Holly has a very cyclical disease she does well <br>for about 6 months and then flares for about 6 months, September is never a <br>good time for her. When she flares, she doesn't grow much. Holly has always <br>dealt with the pain fairly well, she has a huge understanding for her <br>disease. She is very mature for her age, my grandmother likes to say she has <br>an old soul. her temperament is very good, she is very grown up in all she <br>does. n</blockquote> </html> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 Not till college age!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ROFL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 That's how it is with her exactly Georgina, wise beyond her years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 1999 Report Share Posted July 12, 1999 Georgina, Most of the messages that you send are empty? Is it something I need to do? The subjects are interesting, but no body! Hope to hear from you soon. -Coady ---------- > From: Georgina <gmckin@...> > onelist > Subject: Re: [ ] hello > Date: Saturday, July 10, 1999 9:18 PM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 1999 Report Share Posted July 13, 1999 <!doctype html public " -//w3c//dtd html 4.0 transitional//en " > <html> Hi , <p>uh oh. Am I still invisible? I don't know what the problem might be. When I get a copy of the messages I send, they look fine to me. If anybody has any clues, HELP! & nbsp; :-) <p>Thanks, <br>Georgina <p> Coady wrote: <blockquote TYPE=CITE>From: " Coady " & lt;kacoady@...> <p>Georgina, <p>Most of the messages that you send are empty? & nbsp; Is it something I need to <br>do? <br>The subjects are interesting, but no body! & nbsp; Hope to hear from you soon. <p> -Coady <p>---------- <br>> From: Georgina & lt;gmckin@...> <br>> onelist <br>> Subject: Re: [ ] hello <br>> Date: Saturday, July 10, 1999 9:18 PM</blockquote> </html> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 Lee Ann..welcome to the group. Yes, it is wonderful to have contact with people who can actually know what you are going through. Glad you found us too. Annette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 Lee Ann..you sound like a very busy lady )))) Yes, the MTX is powerful and will probably help you a great deal. You will, however, have to continue the blood testing as long as you are on MTX, which is frequently many years. I cannot answer your question about " mid-cycle " ....I am 53 and quit " cycling " years ago. )) I do notice that my face is often swollen after the MTX and I feel bad...just like I had been poisoned...which of course I have. I will soon switch to the shots to possibly help with the nausea. You are fortunate to be at a stage where topical ointments help...they do not help me at all. So far MTX has been the best. Good luck and glad you have joined us. Annette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 Lee Ann,All I can say is God Bless You. I am sure He will. We have 2 adopted children that were babies and we now have grandchildren and so blessed. I am 66 and only had PA for 3 1/2 yrs. When I was put on mtx., pred, plaquinil, folic acid about 3yrs. ago I was like 'brand new " . Hope you have a good RD that follows you closely. I have an excellent one and am so thankful. I put myself in her hands. I am an RN, but let her call the shots on this. She welcomes my thoughts and opinions. When I went for a 2nd. opinion, she said " go ahead as I have no God complex " . You will be in my prayers when I go to bed at nite. Do keep us posted. I feel so lucky when I think of so many suffering from P and PA. The members of this board are just wonderful and are so informative. Some things work for one person and not for another. At least we are kept informed what's going on. God Bless, Betty in Va Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 Hi Lee Ann -- I'm in my late thirties and was diagnosed a year and a half ago. I imagine I had it some five or six years before diagnosis, and saw lots of doctors who could not get a grip on the problem -- so you are not alone in this late diagnosis bit! My hands and feet hurt quite a bit, and I have ankylosing spondylitis in my SI joints. You don't say what meds your RD (Rheumatoid Doctor) had you on, but if you are on folic acid I'd imagine s/he has you on methotrexate. I find MTX works better than just about anything I have tried. I used to take it orally @ 25 mg/week, but my doctor recently switched me to the injectible form. You might find the MTX upsets your stomach, and injections help to minimize the upset. Indocin, a drug which is good or pain, can also upset your stomach, and the way out of that trouble is to switch to Celebrex. There are lots of resources you should consider consulting. One is the web page that accompanies this list, at http://www.wpunj.edu/pa/ . While you are there you can visit the " web resources " page. Among the many good webpages is the one for the Arhtitis Foundation of America, at http://www.arthritis.org . At that site you can become a member, which entitles you to their magazine, " Arthritis Today. " The July/ August issue, on stands now, has a VERY good guide to arthritis drugs. And there are chats in where you can meet arthritis people from all over the world and talk about doctors, drugs, families, experiences, etc. You can try the one at Dr. Koop, http://www.drkoop.com which is open 24x7 but does not have a specific arthritis room. They do feature a Psoriatic Arhritis chat on Wednesday nights at 8-9p EDT. About.com, http://www.about.com , has a room open specifically for arthritis 24x7. All sorts of arthritis people come to that room, often starting around 8p EDT just about every night. They host a PA chat on Thursday at 8p, but is only loosely tied to PA. I was not a " chat " person before I found these rooms, and they are still the only places I " chat. " I have always thought chat a waste of time, and think it largely is, but directed, mature chats like the ones on About.com and Drkoop.com are very useful, especially is you are new to arthritis. So, Lee Ann, if you have waded all the way through this, welcome to the PA list! There are lots of good people here, and with it and some of the other resources I mentioned here I hope your detour to arthritis-land will be that much more comfortable. === , NJ Highlands raharris@... _____________________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 Thanks Annette and , I am just starting my treatment. I have to get a baseline blood test done on Monday and then I will start the medication. Methotrexate is the medication I will be starting. I have to have blood tests every month for a while. I am not happy about this diagnosis but at least I know what is going on now. I have been to several Doctors and none of them really had any answers because my skin condition is not extremely bad and I was not that old. So I gave up complaining for a few years. The Doctor I see now is very good. His wife just recently died after a 10 year battle with cancer. He is much more sympathetic than any other doctor I have seen. My mother has Sjorgens syndrome and my doctor is very interested in treating me early and more aggressively than he would normally. My husband and I have 5 children. Our oldest will be 16 in September, our second one was just 14 - these are our birth daughters. We also have 3 little ones by adoption. All came as newborns - our oldest son is 2 years and 9 months, -- our daughter is 2 years and 6 months and has Downs, -- our second son is 11 months old, has Downs and was born drug addicted. Needless to say I am VERY busy and having quite a time keeping up. We bought a home just a year ago that has 4 levels. The laundry is on the lowest floor and the bedrooms on the top. If I had known I would be dealing with this health problem we would have looked into a different style of home. I would like to adopt again but I think since my health has taken this turn I have all I can handle. I have lower back pain, neck pain and hip pain. I go through a lot of Ben Gay! My kids hate the way I smell but at least I am not in pain all of the time! I was beginning to think my weight was causing my pain since none of the DR's had an answer I have never been any more than 25 pounds over my ideal weight. One thing I have found is following a Lo carb diet really helps with the pain. I don't have as much swelling in my hands on Lo carb either. The problem is it is very hard to eat like that all of the time. Do any of the rest of you have swelling in your face in the morning or a lot of pain around mid cycle? Sorry for rambling but I have a lot of unanswered questions! Lee Ann Walter Wife of Steve; Mom to: 15; Krystle 14; Caleb 2; 2; 10 mo. Home Page: http://www.homestead.com/walter7/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 1999 Report Share Posted August 1, 1999 Hi Annette! My Doc. plans on starting me at 7mg of MTX a week plus the folic acid. What is the folic acid for anyway? He did not tell me. I have not started the medication. I will pick it up tomorrow. I already have face swelling. I hope the med. does not make it worse. I feel like I have been hanging upside down and ridding a horse all night!! What a nice picture that is! I know the Doc. is hoping that starting me early on this medication will delay the onset of the more uncomfortable stages of this disease. I was not too sure I wanted to do this at this point but he feels with my history and my mothers health history I should start now. I am hoping to see some relief. I would love to feel like I actually have some energy! Thanks! Lee Ann Walter Wife of Steve; Mom to: 15; Krystle 14; Caleb 2; 2; 10 mo. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 1999 Report Share Posted August 1, 1999 Hi Betty, Thanks! I am so glad to have found this list. I have been searching for a month for a group like this. I did find many for Psoriasis but not the type of Arthritic group support that I needed. I never knew Psoriasis had anything to do with Arthritis. I just thought it was a skin disorder. I am glad to have a diagnosis finally and a plan of treatment. I had been feeling that in 10 years if I kept on like I have been I would be in bed or dead. It is horrible how this just zaps your energy and zest for life. I definitely went through a time of depression. I don't have time to be depressed now with our little ones needing constant attention. Did you have the skin rash problems your whole life? -Lee Ann Walter Wife of Steve; Mom to: 15; Krystle 14; Caleb 2; 2; 10 mo. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 1999 Report Share Posted August 1, 1999 Lee Ann...the MTX will probably give you relief in several weeks. The dosage you are going to take is very low so you might escape the unpleasant side effects. Getting treatment early may spare you the deformity many of us have. I waited 18 months after I got sick literally overnight with PA...and much damage was already done. You are smart...good luck, Annette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 1999 Report Share Posted August 4, 1999 Hello Iris! Welcome to the group! Kathy (AIH) Seattle area Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 1999 Report Share Posted August 4, 1999 Iris: Welcome to the group. Sue AIH Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 1999 Report Share Posted August 4, 1999 Welcome Iris, Lynn in Wa AIH impsych@... wrote: > From: impsych@... > > I JUST WANTED TO SAY HELLO TO EVERYONE. > > MY NAME IS IRIS, AND I JUST JOINED THIS GROUP. I AM VERY HAPPY TO FINALLY FIND A SUPPORT GROUP WITH PEOPLE WHO SHARE THE SAME EXPERIENCES. I HOPE TO BE SPEAKING WITH YOU AGAIN SOON. > > BYE FOR NOW, > > IRIS > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 1999 Report Share Posted August 4, 1999 Hello Iris Nice to hear from you!! I have a sister called Iris! Eileen [ ] HELLO > From: impsych@... > > I JUST WANTED TO SAY HELLO TO EVERYONE. > > MY NAME IS IRIS, AND I JUST JOINED THIS GROUP. I AM VERY HAPPY TO FINALLY FIND A SUPPORT GROUP WITH PEOPLE WHO SHARE THE SAME EXPERIENCES. I HOPE TO BE SPEAKING WITH YOU AGAIN SOON. > > BYE FOR NOW, > > IRIS > > --------------------------- Quote Link to comment Share on other sites More sharing options...
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