Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 Teri, It really is not all that common for a reaction like Jadon is having, but, there are a few kids that I can recall that didn't care one bit for it and did take some time adjusting to it. I hope that is your case. Does the band look at all too tight to you? It should be a little loose to start out with, they want to give a little room for growth to occur, and then it gets snug so that they can shave areas to work on the flattened areas. Try to keep him as cool as possible, watch out for those red marks, they should be gone within an hour, if not, time for an adjustment. Check the fit of the ears, nothing pinching, or covering going on. Good luck to you and I hope your next post reads that your little one is not crying anymore and has adjusted. Any concerns you have, don't hesitate to call that ortho! Keep us posted! cindy ' mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 Hello, Marisa! I'm not aware of any parents of children with JDM in our group, but we do have many silent members. Good luck to your son and family. [ ] New Member > Hi: > My name is Marisa. My son was diagnosed with JDM 6 years ago. > Hoping to meet other parents who have children with JDM. > Best regards, > Marisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2003 Report Share Posted April 24, 2003 Please let me know how to help someone join this group. I thought they could go to the neuroimmunedr website but that is not taking them anywhere. Can someone pls post the link, I dont remember it. Thanks a ton Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2003 Report Share Posted April 24, 2003 They should go to www.nids.net and click on " Join our discussion group " near the bottom. re:new member Please let me know how to help someone join this group. I thought they could go to the neuroimmunedr website but that is not taking them anywhere. Can someone pls post the link, I dont remember it. Thanks a ton Sara Responsibility for the content of this message lies strictly with the original author, and is not necessarily endorsed by or the opinion of the Research Institute. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2003 Report Share Posted April 28, 2003 Welcome Dom. Sorry that you haven't been feeling so hot and hope that you soon will find out what is going on. Being such an active person, it's difficult to have so much pain. I'm hoping you get a diagnosis soon so that you can start treatment and feel better. a > Hello, > I thought I better join this group as I think I will be needing it ;o) > My name is Dominic, I am 30 years old, live in the UK and I am > waiting on my follow up appointment with the reumatologist, to see > what I have.... > They are thinking RA, Reumatic fever, Chrones, Ulcerative Colitus or > a Viral Infection, But my money is on RA or RF as both apparently run > in the family? > Started with joint pain in my Hips and spread to all joints within 3 > weeks, along with swelling and Fever some nights, took me 10 minutes > and a load of pain just to roll over in bed ! > Well I dont know what else to say really, its all a bit new to me, > This Being ill stuff? (I dont drink, dont smoke, fit, active in many > sports ?)so I guess I`ll just sit quietly at the back and listen for > a while ;o) > Cheers > Dom > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2003 Report Share Posted April 28, 2003 Hi Dom, welcome to the group! We're a wacky bunch some times, but there's a lot of good information and help and support available here. Sounds like you're having a very uncomfortable time right now, and I hope the rheumatologist is able to give you some definite diagnosis and treatment. In one way or another, at one time or another, we have been through or are going through what you are. I lived in England for a short time in Kent in the early 70's, working for Abbott Laboratories. I haven't been back in many years, but would love to take my husband some time...when I can drag him away from his beloved Denmark trips! I am 57, married 27 years, have what is yet to be diagnosed as Dercum's disease and fibromyalgia, and am currently recuperating from a broken ankle. Any suggestions on how to dress up a powder blue cast are gratefully accepted. I am currently working as church secretary, filling in for my daughter who had triplets March 5. Peace and grace, Judi in Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 Dominic: Welcome to the group, it is a good place to be. I have just recently been diagnosed also. It's nice to know that there are others sharing information and support that help you know you are not alone. It is very hard to go thru the diagnosis process, and know that there is something wrong, and just the waiting is enough to drive anyone crazy. I know for me it was a long and at times very exhausting process. I thought no one would ever help me, but they finally did. Just hang in there, and things will come together.....Sheri cr500dom <dom.mitchell@...> wrote:Hello, I thought I better join this group as I think I will be needing it ;o) My name is Dominic, I am 30 years old, live in the UK and I am waiting on my follow up appointment with the reumatologist, to see what I have.... They are thinking RA, Reumatic fever, Chrones, Ulcerative Colitus or a Viral Infection, But my money is on RA or RF as both apparently run in the family? Started with joint pain in my Hips and spread to all joints within 3 weeks, along with swelling and Fever some nights, took me 10 minutes and a load of pain just to roll over in bed ! Well I dont know what else to say really, its all a bit new to me, This Being ill stuff? (I dont drink, dont smoke, fit, active in many sports ?)so I guess I`ll just sit quietly at the back and listen for a while ;o) Cheers Dom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 , I have heard playing peek a boo a few times before might help with the stocking part, and of course any comfy items, lollipops, bottle, paci, I would try a musical toy since she really can only hear it and not play with it well. Good luck and keep us posted! 'mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 In a message dated 4/29/2003 4:31:52 PM Eastern Daylight Time, trmac46@... writes: I think talking and cooing helped most, along with the pacifier. Teri, Good tip! I forgot how I started (nervously) singing a favorite lullaby to during the casting- at that point anything sounded better than the crying :(t It was over quick, just like you said! 'mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 They have toys there already that can get plaster on them so that is taken care of-just have a bottle and a binky ready and have both you and the daddy there one for each side-practice up on the songs you will sing and it really isnt that bad at all it doesnt take long and they are really gentle and loving to them. you will be there the whole time too-dress her in easy to de-clothe clothes-cuz as soon as you get there they undress to the diaper!! this really is the easier part of the whole process believe it or not!! good luck- Sheila mom to Josh banded 17 March --- In Plagiocephaly , " orthochik11 " <orthochik11@a...> wrote: > Hi everyone! I'm a new member here, and I have some questions. My 8 > month old daughter andra was finally diagnosed with > plagiocephaly. (It's taken a while because I was always told that it > would get better on it's own, which it has not). Anyway, she's being > casted for her helmet on Thursday. I spoke with the orthoist already > and he told me that they take about 30 minutes just to get to know > her before the casting. I was wondering if anyone had any helpful > hints on making the casting process as stress-free as possible for > andra? I'm going to bring plenty of toys to occupy her and some > food, but is there anything else that will help? I'd appreciate any > advice. Thank you in advance for your help and I look forward to > chatting with the other members of the group! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 Welcome to the Group! My daughter is 8 months also. She was born on 8-24-02. She also just received her helmet on the 17th of April so we are in the beginning stages ourself. Mackenzie hated the whole casting process but once he got started, it took around 15 minutes to complete. First they put the sock over her head and she didn't like that much then by the time I got her calmed down from that, they put the casting on. It dried very quickly and once he took it off, she was fine. I held her sitting up on my knee so it would have been hard for her to play with toys and there just wasn't any calming her down until it was finished. She was very mad! Hope it goes well and let us know what happens. Mom to Mackenzie Started treatment 4-17-03 > Hi everyone! I'm a new member here, and I have some questions. My 8 > month old daughter andra was finally diagnosed with > plagiocephaly. (It's taken a while because I was always told that it > would get better on it's own, which it has not). Anyway, she's being > casted for her helmet on Thursday. I spoke with the orthoist already > and he told me that they take about 30 minutes just to get to know > her before the casting. I was wondering if anyone had any helpful > hints on making the casting process as stress-free as possible for > andra? I'm going to bring plenty of toys to occupy her and some > food, but is there anything else that will help? I'd appreciate any > advice. Thank you in advance for your help and I look forward to > chatting with the other members of the group! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 Hi , Welcome to the group! Bring a lollipop, that seems to help a lot of parents and babies here. The casting is really over pretty fast. What kind of bane will andra be getting? Please let us know how the casting goes. Good luck, > Hi everyone! I'm a new member here, and I have some questions. My 8 > month old daughter andra was finally diagnosed with > plagiocephaly. (It's taken a while because I was always told that it > would get better on it's own, which it has not). Anyway, she's being > casted for her helmet on Thursday. I spoke with the orthoist already > and he told me that they take about 30 minutes just to get to know > her before the casting. I was wondering if anyone had any helpful > hints on making the casting process as stress-free as possible for > andra? I'm going to bring plenty of toys to occupy her and some > food, but is there anything else that will help? I'd appreciate any > advice. Thank you in advance for your help and I look forward to > chatting with the other members of the group! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 , Thank you for the welcome and the advice on casting. Hopefully we won't have too much trouble. It sounds like the orthoist is going to make it as easy as possible on andra. She's going to be getting a starband. I look forward to talking with you again! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 Well, I sent a reply but it must have been deleted. Anyway, welcome to the group! My daughter is also 8 months old, born 8-24-02 and she just received her helmet on the 17th of April. The casting doesn't take long at all but that didn't matter to Mackenzie. It made her pretty mad! I had to hold her in my lap while he did the casting so it was kind of hard for her to play with any toys. But like I said, it will be over in no time so don't worry. Let us know how it went. There's alot of great people on this board to give information and support! Mom to Mackenzie Starte Treatment 4-17-03 > Hi everyone! I'm a new member here, and I have some questions. My 8 > month old daughter andra was finally diagnosed with > plagiocephaly. (It's taken a while because I was always told that it > would get better on it's own, which it has not). Anyway, she's being > casted for her helmet on Thursday. I spoke with the orthoist already > and he told me that they take about 30 minutes just to get to know > her before the casting. I was wondering if anyone had any helpful > hints on making the casting process as stress-free as possible for > andra? I'm going to bring plenty of toys to occupy her and some > food, but is there anything else that will help? I'd appreciate any > advice. Thank you in advance for your help and I look forward to > chatting with the other members of the group! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 Hi there ! and have covered it pretty well here. The only thing I would add to your list is a camera. The casting is the hardest part, right after making the decision to band all together. After the casting, IT should be smooth sailing. Well, then you have to decorate, but that is fun. Let us know how she does. Dustie > Hi everyone! I'm a new member here, and I have some questions. My 8 > month old daughter andra was finally diagnosed with > plagiocephaly. (It's taken a while because I was always told that it > would get better on it's own, which it has not). Anyway, she's being > casted for her helmet on Thursday. I spoke with the orthoist already > and he told me that they take about 30 minutes just to get to know > her before the casting. I was wondering if anyone had any helpful > hints on making the casting process as stress-free as possible for > andra? I'm going to bring plenty of toys to occupy her and some > food, but is there anything else that will help? I'd appreciate any > advice. Thank you in advance for your help and I look forward to > chatting with the other members of the group! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 HI , Welcome! I just went with my son, who will be 8 mos. om the 30th, to get cast 2 weeks ago today, it went really fast. The ortho spent a few minutes talking to him while setting up the equipment and tools, after they placed the sock over 's head the process was over in about 5-6 minutes. Our ortho worked really fast and removed the cast as soon as it was " soft-set " . whimpered a few times but never actually cried, and after it was over he even smiled at the ortho. I think it was much harder for me than it was for him. The pacifier definitely helped, I wouldn't have been able to use a bottle because of trying to hold him still or toys because his eyes were covered the whole time. I think talking and cooing helped most, along with the pacifier. Good luck and let us know how everythign went! Teri, Mom to 7 1/2 mos. STARbandit 4/25/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 Hi & welcome to our group! You've already rec'd so many great replies, I simply wanted to welcome you and wish you good luck Thursday!! Please let us know how it goes Debbie Abby's mom DOCGrad MIorthochik11 <orthochik11@...> wrote: Hi everyone! I'm a new member here, and I have some questions. My 8 month old daughter andra was finally diagnosed with plagiocephaly. (It's taken a while because I was always told that it would get better on it's own, which it has not). Anyway, she's being casted for her helmet on Thursday. I spoke with the orthoist already and he told me that they take about 30 minutes just to get to know her before the casting. I was wondering if anyone had any helpful hints on making the casting process as stress-free as possible for andra? I'm going to bring plenty of toys to occupy her and some food, but is there anything else that will help? I'd appreciate any advice. Thank you in advance for your help and I look forward to chatting with the other members of the group!For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 Hi , I just read through all the posts you've already received and it seems that all bases have been covered! :-) Such an informative group of people we have here! Let's see - be sure to wear something that you don't mind getting plaster on and same for andra and anyone else you are bringing along. Toys that make music or noise are great for providing a distraction. Good luck and let us know how it goes! Marci (Mom to ) Oklahoma --- In Plagiocephaly , " orthochik11 " <orthochik11@a...> wrote: > Hi everyone! I'm a new member here, and I have some questions. My 8 > month old daughter andra was finally diagnosed with > plagiocephaly. (It's taken a while because I was always told that it > would get better on it's own, which it has not). Anyway, she's being > casted for her helmet on Thursday. I spoke with the orthoist already > and he told me that they take about 30 minutes just to get to know > her before the casting. I was wondering if anyone had any helpful > hints on making the casting process as stress-free as possible for > andra? I'm going to bring plenty of toys to occupy her and some > food, but is there anything else that will help? I'd appreciate any > advice. Thank you in advance for your help and I look forward to > chatting with the other members of the group! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 Hi again! I forgot to ask where you are located and where you are going for your STARband. Marci --- In Plagiocephaly , " orthochik11 " <orthochik11@a...> wrote: > Hi everyone! I'm a new member here, and I have some questions. My 8 > month old daughter andra was finally diagnosed with > plagiocephaly. (It's taken a while because I was always told that it > would get better on it's own, which it has not). Anyway, she's being > casted for her helmet on Thursday. I spoke with the orthoist already > and he told me that they take about 30 minutes just to get to know > her before the casting. I was wondering if anyone had any helpful > hints on making the casting process as stress-free as possible for > andra? I'm going to bring plenty of toys to occupy her and some > food, but is there anything else that will help? I'd appreciate any > advice. Thank you in advance for your help and I look forward to > chatting with the other members of the group! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 Welcome ! I've only been here a week and am thrilled with the info. and support thus far!! Let us know how it goes on Thursday...I'm appreciating all the tips too...we're set for a tentative casting appointment next Tuesday!! Mom to Noah (5 mo.) Atlantaorthochik11 <orthochik11@...> wrote: Hi everyone! I'm a new member here, and I have some questions. My 8 month old daughter andra was finally diagnosed with plagiocephaly. (It's taken a while because I was always told that it would get better on it's own, which it has not). Anyway, she's being casted for her helmet on Thursday. I spoke with the orthoist already and he told me that they take about 30 minutes just to get to know her before the casting. I was wondering if anyone had any helpful hints on making the casting process as stress-free as possible for andra? I'm going to bring plenty of toys to occupy her and some food, but is there anything else that will help? I'd appreciate any advice. Thank you in advance for your help and I look forward to chatting with the other members of the group!For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2003 Report Share Posted April 30, 2003 Hi and welcome to the group. The casting, yes, does stick, but it is well worth it. And it can be fun too. When my son Jeffry was casted they put us infront of a full legth mirrow, oh my, did he love that. My baby loves looking at himself. I brought plenty of toys, juice, binky, but it was all over in about 20 minutes, so not too long. Best wishes, and keep us posted. Heidi, mom to Jeffry, local helmet grad, MN Hugs & Drool, Jeffry, Heidi & Brett Zimmerman >From: " orthochik11 " <orthochik11@...> >Reply-Plagiocephaly >Plagiocephaly >Subject: new member >Date: Tue, 29 Apr 2003 17:40:01 -0000 > >Hi everyone! I'm a new member here, and I have some questions. My 8 >month old daughter andra was finally diagnosed with >plagiocephaly. (It's taken a while because I was always told that it >would get better on it's own, which it has not). Anyway, she's being >casted for her helmet on Thursday. I spoke with the orthoist already >and he told me that they take about 30 minutes just to get to know >her before the casting. I was wondering if anyone had any helpful >hints on making the casting process as stress-free as possible for >andra? I'm going to bring plenty of toys to occupy her and some >food, but is there anything else that will help? I'd appreciate any >advice. Thank you in advance for your help and I look forward to >chatting with the other members of the group! > > > > >For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2003 Report Share Posted May 1, 2003 Welcome, Dominic! Sorry that you have been so ill, but I hope you have something that may just go away! Wouldn't that be nice? What other family members have been affected and by what? PS. I'm not sure exactly why Kathi warned you about me, but a word to the wise .... [ ] New Member > Hello, > I thought I better join this group as I think I will be needing it ;o) > My name is Dominic, I am 30 years old, live in the UK and I am > waiting on my follow up appointment with the reumatologist, to see > what I have.... > They are thinking RA, Reumatic fever, Chrones, Ulcerative Colitus or > a Viral Infection, But my money is on RA or RF as both apparently run > in the family? > Started with joint pain in my Hips and spread to all joints within 3 > weeks, along with swelling and Fever some nights, took me 10 minutes > and a load of pain just to roll over in bed ! > Well I dont know what else to say really, its all a bit new to me, > This Being ill stuff? (I dont drink, dont smoke, fit, active in many > sports ?)so I guess I`ll just sit quietly at the back and listen for > a while ;o) > Cheers > Dom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 I understand you apprehension about taking MTX. It really is a scary drug to take, but it also is the oldest and most reliable. The majority of people taking it have no problems with it providing they take folic acid with it. I was on the oral for awhile, but the GI side effects were really bad. My best friend was the bathroom. I went on the injections and had no side effects. It wasn't effective for me so I stopped. Good luck with your decision. a > Ihave just joined and am very interested in reading all your > comments. I was diagnosed about two years ago with RA. My dr. > started me off on plaquenil and now wants me to start wit > methotrexate. I am a little scared to do so, so if any of you are on > that could you please share your experiences with me. I was supposed > to start it last week but I guess I will start this weekend. I am a > secretary and have pain lifting the phone and things like that. I am > still working and have not even discussed not working. I don't know > what I would do. Thanks for listening and I look forward to hearing > from everyone. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 I'm new to this and was looking to find more info on MTX. I just started it 4 weeks ago on a very low dose. I've experienced very few side effects but was wondering if fatigue was normal? Also, is it hard to give yourself a shot? I'm am quickly losing weight and can't afford the upset stomach I constantly have. Smiles, Jen > I understand you apprehension about taking MTX. It really is a scary drug > to take, but it also is the oldest and most reliable. The majority of > people taking it have no problems with it providing they take folic acid > with it. I was on the oral for awhile, but the GI side effects were really > bad. My best friend was the bathroom. I went on the injections and had no > side effects. It wasn't effective for me so I stopped. Good luck with your > decision. > a > > > > Ihave just joined and am very interested in reading all your > > comments. I was diagnosed about two years ago with RA. My dr. > > started me off on plaquenil and now wants me to start wit > > methotrexate. I am a little scared to do so, so if any of you are on > > that could you please share your experiences with me. I was supposed > > to start it last week but I guess I will start this weekend. I am a > > secretary and have pain lifting the phone and things like that. I am > > still working and have not even discussed not working. I don't know > > what I would do. Thanks for listening and I look forward to hearing > > from everyone. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 Hi! First of all, so sorry to hear that you were diagnosed with RA. I know how I felt 7 years ago whenever I found out that I had RA - it was a real drag. My mother takes Plaquenil and it works for her, but she has a very, very mild form of RA (she is very lucky). I have taken methotrexate for approximately 4-5 years, but don't take it anymore. I started with oral methotrexate at the highest dose that one could take by mouth as my RA was completely out of control at that time. I remember the very first time I took it so well. It made me very nauseated and I threw up quite often, so my rheumatologist switched me to subQ methotrexate and up'd the dose. I took that for a while, but it didn't do the trick either. They then started me on Enbrel in combination with methotrexate, which helped me considerably, but it came to the point where my insurance would not pay for the Enbrel anymore and the methotrexate didn't do it for me alone, so now I am only on prednisone 5 daily (split) and Celebrex 200 mg twice a day. I am anxiously awaiting my first IV infusion of Remicade tomorrow, Friday, May 16, 2003. If you have heard anything about Remicade please post for me - I would really appreciate it. As for the methotrexate, it made me very sick to my stomach, but other people that I have talked to said that it really helped them, so I guess it just depends on who you are and if you can tolerate it. It also gave me bad mouth ulcers and made me want to sleep for days. Just a word of kind advice - since you were only diagnosed 2 years ago, make sure you really, really take care of your body, eat right, get enough sleep at night. Do anything that might prevent the disease from spreading. Believe me, in the end it is very well worth it. When I first got RA I thought oh, it will not do what it does to other people to me! At 2 years after my diagnosis I was doing quite well, but now after 7 years I never know how I am going to feel in the morning when I get up from day to day. I used to be like you in thinking how could I not work? what would I do? Now, I entertain the thought more and more because I can not type like I used to. I am a medical transcriptionist and my fingers just don't want to reach those top keys anymore! I wish you all the best in your fight against rheumatoid arthritis! If you have any further questions about medications, just post! I have taken quite a few (Indocin, Daypro, methotrexate, Arava, Enbrel, Celebrex, prednisone, sulfasalazine, Vioxx) and now I am going to try Remicade. If you ever have to start any of the above listed medications that I have been on before I would be happy to give you all the insight you could possibly need! Take care of you!!!!!! > Ihave just joined and am very interested in reading all your > comments. I was diagnosed about two years ago with RA. My dr. > started me off on plaquenil and now wants me to start wit > methotrexate. I am a little scared to do so, so if any of you are on > that could you please share your experiences with me. I was supposed > to start it last week but I guess I will start this weekend. I am a > secretary and have pain lifting the phone and things like that. I am > still working and have not even discussed not working. I don't know > what I would do. Thanks for listening and I look forward to hearing > from everyone. Quote Link to comment Share on other sites More sharing options...
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