Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 G'day, Well there's something to be said for being a 'squeaky wheel'! Apparently after all my hassling of various media entities to do a better job in raising awareness, I have a bit of 'share of mind' when it comes to them wanting a parents' perspective about JIA. The 'celebrity' doctor who I approached last year, first got us onto the national breakfast TV show, then called me to be a spokesparent for his national radio show, and is planning to do a 'follow up case study' in his national magazine! And now, another magazine Good Medicine, of which I gave the editor a serve for not mentioning JIA in an article about Arthritis- has come through with a three-page story in the next issue! Since I doubt you'd be able to get it outside Australia, if you like to read it, I'll transcribe it below. The most is a Q & A with Bayly's Paed Rheumy, but also includes a brief outline of Bayly's story. Also mentions the annual Camp Footloose for 8-18 y.o. and more contact info. They've done us justice indeed! Except the photo they used for 'Bayly' is a straight haired blond kid (Bayly has dark curly hair!!) That gave us a giggle. Jo Bayly, 3, extended oligo (PS: Please forgive any typo's!) Start Article : WHEN ARTHRITIS STRIKES YOUNG It's a condition that often goes undiagnosed and untreated. Larraine Sathicq asks a specialist about juvenile arthritis. Arthritis, you may think is synonymous with old age, but it affects young people as well. Rheumatoid arthritis, as opposed to osteoarthritis, found in older people, is an auto-immune disease caused by the immune system attacking the lining of the joints. When it happens to someone under the age of 18, it's known as juvenile arthritis and affects one in 250 children. We speak to paediatric rheumatologist Dr Chaitow. Q: What type of arthritis affects children? The commonest form in children is juvenile idiopathic arthritis (JIA). Systemic JIA (less than 10% of all cases) appears with symptoms other than joint pain- including fever, rash and enlarged lymph nodes. Polyarticular JIA affects 5 or more joints in the first 6 months after diagnoses. This type usually becomes evident after the age of 10 and is more likely to affect girls than boys. Oligoarticular JIA is the most common, with 50% of all cases, and is also more likely to affect girls. Psoriatic arthritis, which is associated with the skin condition psoriasis, is characterised by areas of scaly skin often appearing around the elbows or knees. Q: How do young children end up with arthritis? It's not just an age-related condition, JIA is something for which there is no definitive known cause. Some types of arthritis in children can appear after a bacterial or viral infection, but in most cases, we don't know why it happens. Q: My son has arthritis- will he have it forever? It depends on the type of arthritis involved. We can expect 30-40% of children with JIA to grow out of it completely during childhood. Those with other types including rheumatoid arthritis, psoriatic arthritis and inheriting the gene HLA-B27, may have the condition for a much longer period. Q: How easy is it to diagnose? If a joint is swollen, that's a big clue, but many people blame the swelling on minor injuries and the idea of arthritis isn't even considered. Many GPs see the disease very infrequently in children, so they also may think trauma or injury. Some parents put the pain down the 'growing pains'. Other symptoms may include morning stiffness, restricted movement in one or more joints, and unexplained fever or weight loss. The diagnosis of JIA is based on persistence of arthritis (6 weeks or more) and after eliminating other possible conditions. Q: I think my daughter has arthritis- what type of doctor should we see? There are paediatric rheumatologists in all major cities, but if you're outside a major centre you may be referred locally to a paediatrician or an adult rheumatologist (or both). Q: What treatments are available for kids with arthritis? Treatments are similar to those offered to adults- other than those with osteoarthritis, which is due to general wear and tear. Physiotherapy can help and anti-inflammatories are also useful. None of the side effects recently published regarding anti-inflammatory drugs such as Celebrex have been reported in children. In general, these medications are well tolerated in children. Q: I've been told that JIA can affect a child's eyesight - is this true? A condition called uveitis frequently affects children with arthritis, especially those with oligoarticular JIA. It is an inflammation of the eyes and it can be present without causing obvious symptoms. it's therefore considered important for children with arthritis to have regular eye checks, because untreated uveitis can lead to serious eye conditions. " bayly's story " Bayly was 12 months old and happily learning to walk when his parents noticed something was wrong. " He stopped walking at that time and didn't start again for another 9 months " says his mother Jo. he lost his appetite, became clingy and needed comforting all the time. " Then, one day, we were at swimming lessons and his left ankle swelled up to twice its normal size in a matter of minutes. " A lot of tests... Jo took Bayly straight to the local hospital where he was put on a diagnostic treadmill of 19 blood tests and a 10 day stay in hospital. " What they were doing was based on a process of elimination so they had to look for things like trauma and infection " says Jo. " He didn't have a rash, there was no fever or obvious injury " . Finally, a diagnosis It was 6 months before a diagnosis was made. Bayly had juvenile idiopathic arthritis. Now 3, he has JIA in his left ankle, right knee, both wrists and both elbows. He has eye tests every 3 months and blood tests every 6 weeks to monitor the drugs he must take to control his arthritis. He also has hydrotherapy twice a week, physio every 2 months, and sees a dietitian regularly. END ARTICLE ^*^*^*^*^*^*^*^**^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^ Owner/Moderator, Australian online support group for Juvenile Arthritis jra-australia/ Check out our online Celebrity Charity auction http://pages.ebay.com.au/charity/ And meet the Fletchers at http://www.trikearoundaustralia.com.au Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Jo, I see you continue to make fantastic progress down under and around the world in your advocacy and really hard work. When you have those down days, reflect on the good like your post here and know that we all are in this together with you. Hugs, Stacia and Hunter 9 systemic, iritis > > G'day, > Well there's something to be said for being a 'squeaky wheel'! Apparently > after all my hassling of various media entities to do a better job in > raising awareness, I have a bit of 'share of mind' when it comes to them > wanting a parents' perspective about JIA. The 'celebrity' doctor who I > approached last year, first got us onto the national breakfast TV show, then > called me to be a spokesparent for his national radio show, and is planning > to do a 'follow up case study' in his national magazine! > > And now, another magazine Good Medicine, of which I gave the editor a serve > for not mentioning JIA in an article about Arthritis- has come through with > a three-page story in the next issue! Since I doubt you'd be able to get it > outside Australia, if you like to read it, I'll transcribe it below. The > most is a Q & A with Bayly's Paed Rheumy, but also includes a brief outline of > Bayly's story. Also mentions the annual Camp Footloose for 8-18 y.o. and > more contact info. They've done us justice indeed! Except the photo they > used for 'Bayly' is a straight haired blond kid (Bayly has dark curly > hair!!) That gave us a giggle. > > Jo > Bayly, 3, extended oligo > (PS: Please forgive any typo's!) > > > Start Article : > > WHEN ARTHRITIS STRIKES YOUNG > > It's a condition that often goes undiagnosed and untreated. Larraine Sathicq > asks a specialist about juvenile arthritis. > > Arthritis, you may think is synonymous with old age, but it affects young > people as well. Rheumatoid arthritis, as opposed to osteoarthritis, found > in older people, is an auto-immune disease caused by the immune system > attacking the lining of the joints. When it happens to someone under the > age of 18, it's known as juvenile arthritis and affects one in 250 children. > We speak to paediatric rheumatologist Dr Chaitow. > > Q: What type of arthritis affects children? > > The commonest form in children is juvenile idiopathic arthritis (JIA). > Systemic JIA (less than 10% of all cases) appears with symptoms other than > joint pain- including fever, rash and enlarged lymph nodes. > Polyarticular JIA affects 5 or more joints in the first 6 months after > diagnoses. This type usually becomes evident after the age of 10 and is > more likely to affect girls than boys. > Oligoarticular JIA is the most common, with 50% of all cases, and is also > more likely to affect girls. > Psoriatic arthritis, which is associated with the skin condition psoriasis, > is characterised by areas of scaly skin often appearing around the elbows or > knees. > > Q: How do young children end up with arthritis? > > It's not just an age-related condition, JIA is something for which there is > no definitive known cause. Some types of arthritis in children can appear > after a bacterial or viral infection, but in most cases, we don't know why > it happens. > > Q: My son has arthritis- will he have it forever? > > It depends on the type of arthritis involved. We can expect 30- 40% of > children with JIA to grow out of it completely during childhood. Those with > other types including rheumatoid arthritis, psoriatic arthritis and > inheriting the gene HLA-B27, may have the condition for a much longer > period. > > Q: How easy is it to diagnose? > > If a joint is swollen, that's a big clue, but many people blame the swelling > on minor injuries and the idea of arthritis isn't even considered. Many GPs > see the disease very infrequently in children, so they also may think trauma > or injury. Some parents put the pain down the 'growing pains'. Other > symptoms may include morning stiffness, restricted movement in one or more > joints, and unexplained fever or weight loss. The diagnosis of JIA is based > on persistence of arthritis (6 weeks or more) and after eliminating other > possible conditions. > > Q: I think my daughter has arthritis- what type of doctor should we see? > > There are paediatric rheumatologists in all major cities, but if you're > outside a major centre you may be referred locally to a paediatrician or an > adult rheumatologist (or both). > > Q: What treatments are available for kids with arthritis? > > Treatments are similar to those offered to adults- other than those with > osteoarthritis, which is due to general wear and tear. Physiotherapy can > help and anti-inflammatories are also useful. None of the side effects > recently published regarding anti-inflammatory drugs such as Celebrex have > been reported in children. In general, these medications are well tolerated > in children. > > Q: I've been told that JIA can affect a child's eyesight - is this true? > > A condition called uveitis frequently affects children with arthritis, > especially those with oligoarticular JIA. It is an inflammation of the eyes > and it can be present without causing obvious symptoms. it's therefore > considered important for children with arthritis to have regular eye checks, > because untreated uveitis can lead to serious eye conditions. > > " bayly's story " > > Bayly was 12 months old and happily learning to walk when his parents > noticed something was wrong. " He stopped walking at that time and didn't > start again for another 9 months " says his mother Jo. he lost his appetite, > became clingy and needed comforting all the time. " Then, one day, we were at > swimming lessons and his left ankle swelled up to twice its normal size in a > matter of minutes. " > > A lot of tests... > Jo took Bayly straight to the local hospital where he was put on a > diagnostic treadmill of 19 blood tests and a 10 day stay in hospital. " What > they were doing was based on a process of elimination so they had to look > for things like trauma and infection " says Jo. " He didn't have a rash, there > was no fever or obvious injury " . > > Finally, a diagnosis > It was 6 months before a diagnosis was made. Bayly had juvenile idiopathic > arthritis. Now 3, he has JIA in his left ankle, right knee, both wrists and > both elbows. He has eye tests every 3 months and blood tests every 6 weeks > to monitor the drugs he must take to control his arthritis. He also has > hydrotherapy twice a week, physio every 2 months, and sees a dietitian > regularly. > > END ARTICLE > > ^*^*^*^*^*^*^*^**^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^* ^*^*^*^*^ > Owner/Moderator, Australian online support group for Juvenile Arthritis > jra-australia/ > > Check out our online Celebrity Charity auction > http://pages.ebay.com.au/charity/ > > And meet the Fletchers at > http://www.trikearoundaustralia.com.au > Quote Link to comment Share on other sites More sharing options...
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