Guest guest Posted January 25, 2002 Report Share Posted January 25, 2002 it would be great to put the pic up thanks. --- Georgina <gmckin@...> wrote: > Hi , > > That's terrific news, about you and Lori joining the local AF board. > With your family's knowledge and experiences, I'm sure you'll both be > valuable additions to the local arthritis support network. Hopefully it > will also be a very rewarding experience for both of you. My gosh. > That's incredible, that one family could raise over $10, 000!!! The > website where I found the article about was the Missouri Arthritis > Rehabilitation, Research, and Training Center. The home page is: > http://muhealth.org/~arthritis/index.html They also feature your son > 's story, in their section called " Living Well with Arthritis " : ) > I'll paste it in below. Even though we've already posted it here, we > have so many new members. They might enjoy reading it too. If it's > alright with you, I'd love to include the picture of you and in our > JRA List photo Album. Let me know, okay? > > Aloha, > Georgina > > http://muhealth.org/~arthritis/articles/sep01/bike.html > > January 24, 2002 > > > Beating JA is a Family Fight > By Dianna Borsi O'Brien > > > and Wood > (Columbia, Missouri; July 26, 2001) - Six-year-old Wood has > extra reasons to be excited about a new bike. > > Sure, it's new, black, shiny and fun to ride. > > But this bike is a prize, awarded to and his family for > raising the most money in the Arthritis Foundation's summer fundraiser, > the Beat the Heat Bike Ride. > > In addition, has arthritis and his new bike will help him > stay active while avoiding the jarring, jolting effects of running that > aggravate his already painful joints. > > was all smiles, jumping from one foot to another -- no sign > of painful, swollen joints -- during the formal bike presentation > Thursday from Tom Brinker, owner of CYCLEXTREME The Bicycle Warehouse, > with officials from the Arthritis Foundation and Beat the Heat sponsor > WELLAWARE. > > And that is how it goes with 's illness. > > " One day he's perfect and another day he won't be able to move, " > said his father Wood. > > has systemic juvenile rheumatoid arthritis, a subtype of > juvenile arthritis that affects his whole body, not just a few joints. > This is the least prevalent subtype of juvenile arthritis. > > Yet juvenile arthritis itself is not rare - it affects about > 285,000 children nationally - more than those affected by juvenile > diabetes or cerebral palsy, according to the Arthritis Foundation. > > FEAR OF THE UNKNOWN > > is stumped to give advice for other kids with arthritis -- > " Climb in bed and sleep? " he asks? His uncertainty may reflect his new > adjustment to juvenile arthritis. > > JA TIPS FOR PARENTS > 1. Be persistent - work with physicians until you find > out for sure what the illness is and what to do about it. > > 2. Support your child and let him or her do as much as > they feel capable of doing. > > 3. Try to explain the illness but don't overwhelm your > child with the details > > 4. Plan your days a little more carefully and schedule > rest times. If one day is busy, make sure the next few days allow for > more down time. > > 5. Know when it is time to take a break. > > > > was diagnosed in April, three months ago, a mere four months > after he first showed symptoms of the disease. > > In some ways, is lucky. A diagnosis of juvenile arthritis can > take much longer, sometimes even years. > > His parents first noticed his symptoms in January following a > skiing trip. He said his wrist hurt and his parents assumed he fell and > they tried giving him a brace. But then he started getting a rash at > night. The rash improved, however, experienced high fevers, with > temperatures approaching 104, said Wood. > > " During the day he would be fine and then around 5:30 or 6 p.m., > he'd start acting like he would not be able to walk and then the chills > and the fevers would start, " Wood said. > > " That was every day for a while, " he says recalling those > frightening times before was diagnosed. > > The first few physicians the family visited concluded that it was > a reoccurring virus that would outgrow. Finally, a physician > referred the family to a pediatric rheumatologist, Cassidy, M.D., > with the University of Missouri Health Care. > > JUVENILE ARTHRITIS > > Rheumatoid arthritis, especially juvenile rheumatoid arthritis, > can be difficult to diagnosis because there is no one single lab test to > identify the disease. > > In addition, the nature of the disease includes ups and downs. The > downs are called flares and are periods of time when the illness is more > active. > > Rheumatoid arthritis is an autoimmune disease, which means the > body mysteriously starts to attack its own tissues in the joints and in > some cases in other organs as well. > > But there is hope for . > > His parents persisted until he received an accurate and early > diagnosis, one of the keys to heading off significant damage from the > illness, says Kim , one of the state's five Juvenile Arthritis > Care Coordinators. works with Cassidy to help children with > arthritis and their families in mid-Missouri receive the care they need. > > > 's parents' involvement is another good sign, said . > " When the parents are involved, (the kids) know there's someone looking > out for them and things are going to be done to take care of their > pain, " she said. > > When a child's treatment and medication is neglected, he or she > could be in a wheelchair or even blind, explained. > > While there is no cure for arthritis, 's parents make sure he > receives the proper medical care. In addition, there are new medications > to help and others with juvenile rheumatoid cope with the pain and > the symptoms of this serious, chronic disease. > > takes several different medications, including methotrexate, > one of several drugs that help delay, and in some cases, stop the > progression of the disease. > > A FAMILY DISEASE > > The disease may attack 's body but it affects his whole > family. > > Wood explained his family quickly learned to not over > schedule their son. > > " We have to think about what we're doing and how we're doing it, " > said Wood. " We've slowed down a lot. " > > At first 's family gave up one of their favorite activities - > taking off on a quick trip for a day or two. 's illness and > medications were too unpredictable. > > And when the Woods travel, they make sure the trip includes plenty > of time for rest. > > While 's illness is more under control, the family still takes > his health into consideration at all times. > > For example, after an active day, such as a recent family reunion > in St. Louis with his cousins " going 100 mph all day, " Wood knew > his son would need a few days of rest to recover. > > The family also keeps a wellness journal for . At first his > disease was so unpredictable and his medication needed to be adjusted > often, 's parents needed to keep track of his medications and > activities and record his reactions. > > They are looking ahead as well. > > The family has asked their juvenile arthritis care coordinator to > visit his school when starts first grade at Boulevard > Elementary School this fall. > > , the coordinator, said she will tell his teacher about > unobtrusive ways to help keep moving during the day so he does not > get stiff. For example, she said, could be asked to hand out papers > during the day, to sharpen pencils for others and to be encouraged to go > for drinks of water frequently. will also be supplied with a second > set of books to save him from carrying his school materials to and from > school. > > JOINING FORCES WITH THE ARTHRITIS FOUNDATION > > Wood said he and his wife decided to get involved with the > Arthritis Foundation for several reasons. > > " We figured we might as well be proactive with it, see about what > we can do and not get caught by surprise, " he said. The Arthritis > Foundation offers educational materials and programs that can help > people === message truncated === > ATTACHMENT part 2 image/jpeg name=woodsja.jpg __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 Think of how far Josh has come...I think he's doing wonderful considering how he was when I first joined the list. I tend to look at things as milestones and he has made many milestones this past year. I'll send warm, fuzzy, thoughts your way... Kathy (mom of Tally, 7 years, Stills) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2002 Report Share Posted February 19, 2002 Congrats for the 3mg! Was it uncomfortable for him at first, and then it got better? Because my doc is really pushing me to go from 7.5 to 5, which I did starting this week, but I'm uncomfortable. Not unbearably so, though. I'm thinking maybe my body will get used to it. Otherwise I guess I could break the half tablet into fourths, and take 6.25 mg for a few days. Anyway, congrats again for Josh. He seems to be doing so well! Elisheva > Hi Kathy, > > You're absolutely right, Kathy. This we can definitely handle. Right now 's arthritis pain is mostly limited to just one joint. His right ankle. And he has some stiffness/limited range of motion in his left knee. Compared to how it used to be, he's doing terrific : ) On Friday the doctor said from now on, instead of increasing his prednisone dose, we should consider increasing his MTX dose. Up to 17.5mgs. That will probably work. For now, no change. Just fine for us, as he's just getting comfortable at 3mgs of prednisone. Finally : ) > > Thanks, > Georgina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2002 Report Share Posted February 19, 2002 Georgina..great news..i am happy for Josh and your family! karen(tab16..poly) From: " Georgina " <gmckin@...> Reply- < > Subject: Re: Georgina Date: Mon, 18 Feb 2002 15:11:18 -1000 Hi Kathy, You're absolutely right, Kathy. This we can definitely handle. Right now 's arthritis pain is mostly limited to just one joint. His right ankle. And he has some stiffness/limited range of motion in his left knee. Compared to how it used to be, he's doing terrific : ) On Friday the doctor said from now on, instead of increasing his prednisone dose, we should consider increasing his MTX dose. Up to 17.5mgs. That will probably work. For now, no change. Just fine for us, as he's just getting comfortable at 3mgs of prednisone. Finally : ) Thanks, Georgina Think of how far Josh has come...I think he's doing wonderful considering how he was when I first joined the list. I tend to look at things as milestones and he has made many milestones this past year. I'll send warm, fuzzy, thoughts your way... Kathy (mom of Tally, 7 years, Stills) _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2002 Report Share Posted February 19, 2002 Elisheva, Maybe you could just go down by .5mg or 1mg. Prednisone comes in 1mg tablets, ask your doctor about it. When n starts getting to 5mg our ped rheumy decreases by .5mg. Good luck. >From: " elishevachaya " <elishevachaya@...> >Reply- > >Subject: Re: Georgina >Date: Tue, 19 Feb 2002 17:33:21 -0000 > >Congrats for the 3mg! Was it uncomfortable for him at first, and then >it got better? Because my doc is really pushing me to go from 7.5 to >5, which I did starting this week, but I'm uncomfortable. Not >unbearably so, though. I'm thinking maybe my body will get used to >it. Otherwise I guess I could break the half tablet into fourths, and >take 6.25 mg for a few days. >Anyway, congrats again for Josh. He seems to be doing so well! > >Elisheva > > > > > Hi Kathy, > > > > You're absolutely right, Kathy. This we can definitely handle. >Right now 's arthritis pain is mostly limited to just one >joint. His right ankle. And he has some stiffness/limited range of >motion in his left knee. Compared to how it used to be, he's doing >terrific : ) On Friday the doctor said from now on, instead of >increasing his prednisone dose, we should consider increasing his MTX >dose. Up to 17.5mgs. That will probably work. For now, no change. >Just fine for us, as he's just getting comfortable at 3mgs of >prednisone. Finally : ) > > > > Thanks, > > Georgina > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2002 Report Share Posted February 19, 2002 Georgina that is great about Josh being on 3 mg and getting used to it.It was only a few weeks ago he was on 4mg and 3.4mg and having enough trouble for you to start to worry a little bit.Have they already raised his MTX or are they just thinking about it? It has helped tremendously,he has finished his first week of 9mg all am and is doing great,I would be lying if I said he never complained,but before on these doses he would have enough pain he would cry,now its just things like my foot hurts while he is running a 100 miles an hour,more jaw involment than anything,but the motrin takes care of most complaints,never seemed to do anything before. sees the rheumy tommorrow,he has the croup which is inflimation of the larynax ,I wonder how it will affect his labs.His sed and wbc had come down so much last month I cried.I hope Josh will be able to continue tapering(you are almost there,yiphee)once you get to a certain point(half mg)its like sugar water.Just dont get in to too big a hurry-easier said than done-I know.I am so happy for you guys you have been praying for this for years.I will keep my fingers crossed.lots of hugs Becki and 3systemic Georgina wrote: Hi Kathy, You're absolutely right, Kathy. This we can definitely handle. Right now 's arthritis pain is mostly limited to just one joint. His right ankle. And he has some stiffness/limited range of motion in his left knee. Compared to how it used to be, he's doing terrific : ) On Friday the doctor said from now on, instead of increasing his prednisone dose, we should consider increasing his MTX dose. Up to 17.5mgs. That will probably work. For now, no change. Just fine for us, as he's just getting comfortable at 3mgs of prednisone. Finally : ) Thanks,Georgina Think of how far Josh has come...I think he's doing wonderful considering how he was when I first joined the list. I tend to look at things as milestones and he has made many milestones this past year. I'll send warm, fuzzy, thoughts your way... Kathy (mom of Tally, 7 years, Stills) Quote Link to comment Share on other sites More sharing options...
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