Guest guest Posted August 24, 2002 Report Share Posted August 24, 2002 Hi,i dont know if i am at the right place or not,but this is the only group that i have seen so far with the most members for arthritis, so i hope someone can help.my 12 year old,Alisha, has been having joint problems for over a year now.she has been tested for JRA,lupus,lyme disease,strep,all kinds of blood work,and everything comes back normal.she now in the past 2 months has been having pain and swelling in her one knee.she had an MRI done on her knee and there are no tears but there was swelling.they called it effusion in the joint??we had her to an ortho dr the other day and he said she has migrating arapothy(sp)and fluid is going back and forth from her left knee to her right ankle.she is now referred to a pediatric rheumatologist for a 3rd time to see if we can figure out what is going on with this child.they are refering her with monarticular arthritis she is always twisting her ankles and wrists.we had a knee brace for her but she had an allergic reaction to the neoprene.she was on naproxen 500mg,2 tablets twice daily,but it didn't help at all.she is now on vioxx for pain.the pain in her knee comes on fast and very sharp and only lasts a few seconds,but happens a couple times a day.i would really appreciate any info you could give to me.thanks in advance. Harry and (adult hypophosphatasia,scoliosis) shellye@... parents to-------- ----12/5/86 Alisha----12/28/89(slight scoliosis,allergy induced asthma,Reflux,vocal box spasms) ----9/17/93--3/11/94(infantile hypophosphatasia)our angel in heaven. Chyanne----6/7/96(allergy induced asthma,speech delays) Sierra----5/25/00(infantile hypophosphatasia-brittle bones,hydrocephalus-shunt august 7,01,craniosynostosis-cvr-foa oct.25,01,failure to thrive,g-tube-nissen,shunt revision dec.11,01,chronic lung disease,reflux,hypotonia,global delays.) Sierra's story---- http://www.geocities.com/shellyeus/sierras-page.html moderator of---- various-childhood-illnesses ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2002 Report Share Posted August 25, 2002 Hi and welcome to the group..My name is and I have a daughter Tabitha who is 17..she was diagnosed with polyarticular in Dec. of 89'. I don't have any answers for you but to keep on pushing..you seem like you know what that is... I read Sierras story..it brought tears to my eyes..I have a 2yo old healthy little girl and as much as she can wear me out..your story made me cherish her even more..my heart goes out to you and your family..but what terrible things are thrown at us ..can only make us stronger..and I bet you are one strong lady.. Good luck..and by the way..I was wondering if you still go to Hershey..Tabs rheumy is Dr. Groh at hershey medical center..and he is awesome!! take care karen(tab17..poly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2002 Report Share Posted August 25, 2002 , Thank-you for the warm welcome.yes,we do take alisha to hershey but she is seen by Dr.Ostrov.she is also a very nice dr.most of them are nice down at hershey.we only had problems with one of sierra's old drs,but we switched to a different one.yes,i have been pushing for answers.we need to get this thing figured out.alisha just walks back the hallway and twists her ankle.she does it all of the time.it's driving us nuts!! Harry and (adult hypophosphatasia,scoliosis) shellye@... parents to-------- ----12/5/86 Alisha----12/28/89(scoliosis,allergy induced asthma,Reflux,vocal box spasms) ----9/17/93--3/11/94(infantile hypophosphatasia)our angel in heaven. Chyanne----6/7/96(allergy induced asthma,speech delays) Sierra----5/25/00(infantile hypophosphatasia-brittle bones,hydrocephalus-shunt august 7,01,craniosynostosis-cvr-foa oct.25,01,failure to thrive,g-tube-nissen,shunt revision dec.11,01,chronic lung disease,reflux,hypotonia,global delays.) Sierra's story---- http://www.geocities.com/shellyeus/sierras-page.html moderator of---- various-childhood-illnesses -------Original Message------- Hi and welcome to the group..My name is and I have a daughter Tabitha who is 17..she was diagnosed with polyarticular in Dec. of 89'.I don't have any answers for you but to keep on pushing..you seem like you know what that is...I read Sierras story..it brought tears to my eyes..I have a 2yo old healthy little girl and as much as she can wear me out..your story made me cherish her even more..my heart goes out to you and your family..but what terrible things are thrown at us ..can only make us stronger..and I bet you are one strong lady..Good luck..and by the way..I was wondering if you still go to Hershey..Tabs rheumy is Dr. Groh at hershey medical center..and he is awesome!!take carekaren(tab17..poly) ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2002 Report Share Posted August 25, 2002 Hello, I am sorry that you are having to go through this with you daughter. Many of us with arthritis and other autoimmune diseases are finding that we have Lyme disease. Forget whether or not you have seen a tick bite on you daughter, forget what you have heard about lyme disease being found only in the northeastern part of the US. We are finding that transmission is occuring in more ways than just a tick bite ie sexually transmitted, possibly transmitted from a mosquitos and it has been proven to be passed ineutero (sp). If you search Lymenet.org you can learn much more. you can also search under deja.com which leads you to the google groups, one is called sci.med.diseases.lyme. Although testing is not 100%. YOu may be one of the lucky few that gets a positive diagnosis, but many lyme literate MD's will treat on clinical presentation irrespective of allopathic test results. it is important to be tested by one of the very few reputable labs for lyme in the country. I believe the best is Igenex.com see their website. YOu can call them and they will send you the instructions for the simple blood test or the urine test. Knee swellling and Knee pain is VERY common in lyme disease. The treatment regimes vary incredibly, but the lyme community recommends you find a LLMD to treat which is a lyme literate MD, an MD who is very familiar with treating this evasive and difficult disease. Best of luck. you are on the right path. Don't stop searching. kathy rheumatic New,please help Hi,i dont know if i am at the right place or not,but this is the only group that i have seen so far with the most members for arthritis, so i hope someone can help.my 12 year old,Alisha, has been having joint problems for over a year now.she has been tested for JRA,lupus,lyme disease,strep,all kinds of blood work,and everything comes back normal.she now in the past 2 months has been having pain and swelling in her one knee.she had an MRI done on her knee and there are no tears but there was swelling.they called it effusion in the joint??we had her to an ortho dr the other day and he said she has migrating arapothy(sp)and fluid is going back and forth from her left knee to her right ankle.she is now referred to a pediatric rheumatologist for a 3rd time to see if we can figure out what is going on with this child.they are refering her with monarticular arthritis she is always twisting her ankles and wrists.we had a knee brace for her but she had an allergic reaction to the neoprene.she was on naproxen 500mg,2 tablets twice daily,but it didn't help at all.she is now on vioxx for pain.the pain in her knee comes on fast and very sharp and only lasts a few seconds,but happens a couple times a day.i would really appreciate any info you could give to me.thanks in advance. Harry and (adult hypophosphatasia,scoliosis) shellye@... parents to-------- ----12/5/86 Alisha----12/28/89(slight scoliosis,allergy induced asthma,Reflux,vocal box spasms) ----9/17/93--3/11/94(infantile hypophosphatasia)our angel in heaven. Chyanne----6/7/96(allergy induced asthma,speech delays) Sierra----5/25/00(infantile hypophosphatasia-brittle bones,hydrocephalus-shunt august 7,01,craniosynostosis-cvr-foa oct.25,01,failure to thrive,g-tube-nissen,shunt revision dec.11,01,chronic lung disease,reflux,hypotonia,global delays.) Sierra's story---- http://www.geocities.com/shellyeus/sierras-page.html moderator of---- various-childhood-illnesses ____________________________________________________ IncrediMail - Email has finally evolved - Click Here To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2002 Report Share Posted August 25, 2002 HI , I saw your post and had to write. My daughter was diagnosed last year at the age of 14. Hers started in her left knee. Initially we thought she had hurt herself during ballet because she thought she felt a pop and her knee gave out. She went to an ortho who finally sent her for MRI. She had no blood work but the MRI showed a large effusion, no tears etc. He put her on crutches, in a brace and then to PT. None of the PT helped. The brace didn't help either. It settled down some on its own. She even went to a 2 week intensive dance camp. She had to sit out a couple times because it hurt or gave out but did remarkably well. Unfortunately that was the calm before the storm. A couple weeks later I found her laying on the couch at dance with ice on her knee. Her friends had to carry her there because she couldn't walk, her knee joint wouldn't hold her. When I checked the left knee it was huge, hot and red. So I decided to check the right to see how different it was. I was shocked, her right knee was worse than her left. It hit me that night that when she was on crutches she was complaining of her elbows hurting, being locked in position etc. And I knew what was wrong with her. If the doc didn't agree in the morning, heads were going to roll! (LOL--At least I was bound and determined that we were going to get to the bottom of it). When I told the ped what had been happening since April (this was August) he told us the bad news. It was JRA. She is not positive for the RA factor, her SED rate I don't think has been astronomical but her joints have been. She has been through a lot in a year. Her affected joints are her elbows, left wrist, right shoulder, left ankle, both knees and occasional finger involvement. The knees have been really stubborn. I guess what I am trying to say, and why I felt I had to write, is because not every one presents the same way with lab work etc. Your daughter sounds much like ours. I hope this time you get some answers. From what I was told the tell tale sign is swelling for 6 or more weeks in the joints. Lab work can tell them other things but labs do not necessarily mean you have JRA. There are people with positive rheumatoid factor, found on blood work to rule out things, that never present with RA/JRA. Let us know how the doctor appointment turns out. e, mom to joe 15yo polyarticular JRA shelly wrote: Soili, thank-you for your welcome.no,i didn't know that you can have jra and still have normal blood work.her other joints aren't ok.she started with pain in her right knee,went to her right ankle,to her left ankle,to her right wrist,to her left wrist and now her left knee.i hope we soon find out what it is because she just keeps getting worse. Harry and (adult hypophosphatasia,scoliosis) shellye@... parents to-------- ----12/5/86 Alisha----12/28/89(scoliosis,allergy induced asthma,Reflux,vocal box spasms) ----9/17/93--3/11/94(infantile hypophosphatasia)our angel in heaven. Chyanne----6/7/96(allergy induced asthma,speech delays) Sierra----5/25/00(infantile hypophosphatasia-brittle bones,hydrocephalus-shunt august 7,01,craniosynostosis-cvr-foa oct.25,01,failure to thrive,g-tube-nissen,shunt revision dec.11,01,chronic lung disease,reflux,hypotonia,global delays.) Sierra's story---- http://www.geocities.com/shellyeus/sierras-page.html moderator of---- various-childhood-illnesses -------Original Message------- Hi Alishas' parents,first I have to tell you that I admire you very much for coping with such terrible diseases as s and Sierras. And yet you have the strenght to share it others as well...About jra and knee pain. You probably already know that jra doesn't necessarily show in blood work and is sometimes very difficult to catch. The effusion you mentioned seen in MRI can be caused by jra but usually it's then called "synovitis" because an experienced radiologist can tell the difference between rheumatoid and traumatic swelling. This is not easy, though. The pain Alisha has discribed (sharp, sudden) does sound more like coming from around the knee joint rather than from the joint itself. If her other joints are ok, sounds like it could be something else than jra, but the rheumatologist is the one to know. Try to be patient, jra and other musculosceletal problems are tricky. Just try to ease the pain and keep the range of motion normal. I hope you'll find out soon what the problem is.My love to the whole family,Soili from Finland & Juho 7yo pauciarthritis + husband and other kids: 16 yo, Sanni 14 yo, Inka 11yo, Jukka 10yo (epilepsy & ADHD), Juha 6yo (epilepsy & development delays), Anni 3 yo (asthma) ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
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