Guest guest Posted April 4, 2006 Report Share Posted April 4, 2006 carlene, can they do radio frequency ablation on other nerves other than the facet joint? marsha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2006 Report Share Posted April 5, 2006 Marsha, i cannot answer that; maybe the website on Radio Frequency Lesioning can. i do have some good news to share. our family doc reviewed my recent MRIs and we finally got in to talk to him. he agrees that " there is a lot going on in your back " and also reminded me that much of that, the osteoarthritis and degernative disc disease is long term and will be something i learn to live with. but he does not think i need surgery, at least not for several months until after we try a new, more eastern approach which involves rolfing twice a month, weekly restorative yoga, and physical therapy with a non-traditional therapist who also uses eastern techniques. our doctor said he has bulging discs and had hip pain and since he has been doing these other practices he is pain free. although he did say he was a bit uncomfortable that day and needed to get some treatments and was anxious for his yoga class, he let me feel his upper back, neck and shoulders and the muscles were so pliable i could not believe it. he felt mine and said they were concrete! so, while i advance on this new program which has given me so much hope and alleviated 2 months of intense stress after seeing the doctor that wanted to fuse 3/4 of my spine, i have also sent my MRI's to a minimally invasive surgeon in NY and to another in CA. so if there is something that really does need surgical treatment, i can do that down the line. my ablation is still working pretty well for my low back, especially on the days i do not sit at the computer a lot and i still have no leg pain. but i am having mid-back and neck pain. but today is rolfing day so hopefully some of that will be relieved. Carlene in MT Re: New Member carlene, can they do radio frequency ablation on other nerves other than the facet joint? marsha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 At 02:52 AM 4/27/2006, you wrote: >This is my first time posting. I have a few questions about >spondylolysis if anyone can help. >Also what is the treatment for this? Is it from a stress >fracture? Any info will be appreciated. Katyi, welcome. There's a group that deals strictly with spondylolisthesis, if that's what you mean, and you can subscribe here: Spondylolisthesissupport-subscribe The home page is here: Spondylolisthesissupport/ HTH http://thebacklog.blogspot.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 _SPONDYLOLISTHESIS - Google Search_ (http://www.google.com/search?hl=en & ie=UTF-8 & sa=X & oi=spell & resnum=0 & ct=result & cd\ =1 & q=SPONDYLOLISTHESIS & spell=1) , i hope this helps. at least it is a place to start. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2006 Report Share Posted May 30, 2006 Angel, welcome to the board! You can start by reading posts (and replies to those posts) by grace from the last few days. Grace is also new to hyperthyroidism. Kim New member Hello everyone, My name is Angel. I just found out about an hour ago that I have hyperthyroidism. I was a bit shocked and dont know really what to expect. The doctor is sending me for a thyroid scan and uptake. I have no clue ( Anyways I dont have much to add to the group right now. I am in the WOW so now what stage. I look forward to reading your posts ) Angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2006 Report Share Posted May 31, 2006 Hi there Angel, Take heart and don't panic, there are people who can support and advise who have been where we are. I have not long been diagnosed either and it is a massive learning curve but hey, we can learn together:-) Just remember there are lots of things that can help. Ask others about the thyroid uptake thing before you get it. I am trying to find out as much as I can and am on ATD (anti thyroid drugs) which are calming me down a bit tho I still have " racy hot moments " . (sounds better than it is:-D) There is a lot of info out there and I believe that you have to weigh things up for yourself, there are no right and wrongs and I don't think the kind of people on here would judge you no matter what choices you make. Just remember there are choices, that was not made clear to me. If you are hyper wait til you are calmer before making decisions. Meantime take care Grace Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 HI , I recently joined this group and found it useful to read all the message since the group started and that way I was able to pick up on things that seemed to work or not. You are to be admired for rescuing these children and I hope that we can help you to find answers. Other good groups are brain injured child and epilepsy approach which have good suggestions as does a website called childbrain.org (for developmental stuff). I am new to this epilepsy " game " . My baby is 9mths old and has uncontrolled seizures due to a malformation of his brain. We weaned off meds and then he went into status last week and so we had to put him back on (but very minimal 50mg Vigabatrin twice daily) which is 1/2 ml twice day. This med is not supposed to be used as a monotherapy but we hated the side effects of the other meds which still couldn't control seizures and in fact made them worse. The best we get is about 2-3 seizures per day. Recently we have focused on 's nutrition and vitamin supplementation but this takes time. Look at diet, herbs, vitamins. We have started patterning type excercises with to help his development but seizures increased at same time which may be bc of increased brain activity we are hoping this will settle down now back on meds. I am also starting Hyperbaric oxygen therapy nxt week so we'll cross our fingers. I am no nutritionist but maybe you can give us an ideas of your children's diet and any other diagnosis and maybe we can give suggestions. Good luck Rose and the beautiful . > > Hello, > I just joined the group and wanted to offer an intro. > My sons are both adopted ,from " druggie " birth > mothers, were evry abused and neglected prior to > coming to us and both have DX of Cerebral Palsy with > Seizure disorder, > The youngest ones seizure are fairly controlled, the > older ones are NOT! > The Neuro has both on Depakote Sprinkles. They take so > much meds and if I let them, the docs would have them > on even more than they are on. I hate AEDs etc and the > side effects are awful but the doc says it is a lesser > of 2 evils. > My oldest is developing tremors and " panic " outburst > since being on Depakote and the doc says it is because > he is not on enough and I must raise the dosage even > more? > I have read a lot of your posts and have some > questions. > Do the B vitamins help ease some of the side effects > of AEDs? > Has anyone tried GABA supplements? > How about herbs, any suggestions? > ANY suggestions would be appreciated. > Thanks, > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Hello- Welcome to the group. Im glad that you have found this place despite the sadness behind the reason that you have. Does your daughter have polyarticular JRA? or ??? What sites have you been looking at for information? Especially getting contradictory stuff? The arthritis foundation can give you the basics and info about supplements as well. www.arthritis.org Here is another source of information that has a link to a lot of other credible ones: http://www.niams.nih.gov/hi/topics/juvenile_arthritis/juvarthr.htm A few months ago, I attended a conference on Pain Management in Women across the Lifecycle. During that conference, we heard a fabulous talk from Dr Chesney, a physician at NIH (National Institutes of Health) CAM - complementaty./alternative medicine.. think that is what it stands for, They are working on aggressively studying alternative treatments and making sure that alternative medicine companies are having the dose of whatever it is selling where it should be or proclaimed. They also have a custom care lines and stuff for physicians to call and can look for potential interactions between 'alternative' and western medications. Let me see if I can find their website... aha.. here it is: http://nccam.nih.gov/ For JRA, my understanding is that Glucosomine/chrondrotin is not helpful. It has been indicated to help protect bone loss in Osteoarthritis but not with JRA/RA diseases. I have heard, from my rheumatologist and others at the AJAO- American Juvenile Arthritis Organization conferences that borage or evening primrose oil has been indicated in decreasing inflammation in the long-term. It docent replace the treatment with anti inflammatories but seems to help. Im sure the nccam source might be useful here as well. Antibiotic therapy is another thing I don't know much about except just like most things.. it works for some and not for others. I've heard loads of good stuff about acupuncture as helping relaxation and pain relief but i haven't tried it yet. There is quite a bit of research showing support for its use and many insurances will now cover it. My anesthesiologist at the pain clinic does acupuncture as well. It has been show th provide pain relief for some people. Massage is nice... Swimming and other pool activities are Excellent! Physical therapy is also used a lot to maintain joint motion, etc. Since she is in sports, I guess that isnt such a challenge at the time. Exercise, rest, ice, and stuff really helps in joint care. NSAIDS vary by the drug and the weight of the person. MTX dose doesn't sound too high but research indicates again that aggressive treatment increases the best possible chance of positive outcome. This disease CAN be very destructive if not treated properly. The fact that she already has erosion showing on the bone scan is indicative of more aggressive disease. I do n't know when she should have another bone scan but good question to ask her doctor. My peds rheumy I had for many years also went by the philosophy of allowing those with JA to do whatever they can.. stay in sports... whatever activities.... as they help sometimes physically and def. mentally. Im sure she will learn her limits as time goes on. Hopefully with treatment, she will feel better soon. If not, there are lots of options. Im sure its hard being a teen just diagnosed with JRA or any rheumatic disease for that matter. When she is ready, maybe she will want to read more about it. Education on the disease can be really helpful in coping and making decisions but only when she is ready. I think its easy and common for people to want to just.. well kids especially to want to just forget about it so it 'doesn't exist'... the seek for control, etc. These days.. the treatments options are much better and can have very positive results. OF course, this doesn't happen for everyone but I suppose it comes down to taking it one day at a time while being proactive. The local Arthritis Foundation might have some support groups or other things that can help you and her. Anyways... hope these sources help you and arent more overwhelming! Issadora (PolyJRA- 5, Fibromyalgia- 7) Currently 28 On 8/12/06, Abbott <lauabb16@...> wrote: > > Hi, > > My name is , and I have a 13 year old daughter who was diagnosed with > JRA at the beginning of the summer. She is tall for her age and has been > very active in sports. During softball season in the spring, she began > limping with her left foot. After several x-rays, bone scans, etc....she was > referred to Augusta Medical College and the diagnosis was confirmed. We have > been there for two visits, about a month apart. Carolyn is starting > methetrexate and is taking 2 pills a week at this point. She continues to > limp somewhat and is on Neproxen, too. Her knees were also swollen, but they > seem to be much better. It has been a difficult summer for me...the sadness > I feel for her is overwhelming. Carolyn, on the other hand, continues to be > very social with her friends and doesn't talk a lot about the arthritis. She > said that she wasn't going to let this ruin her life. I find it very > difficult at this point because there are so many things I read that seem > confusing > or contradictory...and I don't seem to be getting answers to the many > questions spinning around in my head. I have read about supplements, > preferred foods, acupuncture, massage, etc.... > > Is there anything that can be done to keep the medicine at a lower dose, > or is it just based on her weight? > > Does anyone know anything about antibiotic therapy?? > > She will be trying out for volleyball in the fall and wants to play > basketball again after that. The doctor said to let her do what she feels > that she can... > > Are there any supplements that are especially helpful? > > Carolyn's original bone scan showed that there was already some erosion > going on in her foot. At what point should she have another scan to see how > she is doing?? How do you know if it has spread to another part of the > body?? > > Is Glucosamine, Chondroitin, and MSM equally helpful to the Naproxen?? > > Are there any supplements she should take for her eyes?? > > Does anyone take the hydrolyzed collagen protein HCP?? > > Any advice would be appreciated. > > Thank you for your help, > > > > > --------------------------------- > Stay in the know. Pulse on the new .com <http:///>. Check it > out. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Hi Issadora, Thank you so much for your reply. The doctor indicated that she has polyarticular JRA...my husband also has psoriasis so that is a possibility but Carolyn does not have the skin condition to go with a diagnosis. So far, it seems to be primarily in her foot and knees. Her right hand was initially weaker than her left, but there has been no swelling or complaints. Now both hands are equally strong. I am very concerned that we are going too slowly. She was on Naproxen for about 5 weeks; we have just started methetrexate. The last two weeks she only had 1 pill each week. This last week, she had 2 pills (5mg) and will have another 2 this week. Then we go to 3 pills. The doctor indicated that we may need enbrall. The initial doctor reports indicated that her disease was aggressive at that time; yet there seems to be a standard procedure that they go through. Carolyn is a little taller than I am (5' 6 " or 7 " ) and weighs about 125 pounds. She looks more like a 16 year old than a 13 year old. She is basically adult size. I have thought about going to a different doctor, but I don't know if this pace is standard procedure. We are in Savannah, GA, and the nearest doctor is in Augusta (3 and 1/2 hours away). We could also go to Atlanta. I have looked into ville, FLA, but didn't have any luck. I am not sure about Columbia, SC. What is your opinion about this?? Again, thank you so much for your help. I will look into the information you have provided. Abbott Issadora <FlyfreeIzzie@...> wrote: Hello- Welcome to the group. Im glad that you have found this place despite the sadness behind the reason that you have. Does your daughter have polyarticular JRA? or ??? What sites have you been looking at for information? Especially getting contradictory stuff? The arthritis foundation can give you the basics and info about supplements as well. www.arthritis.org Here is another source of information that has a link to a lot of other credible ones: http://www.niams.nih.gov/hi/topics/juvenile_arthritis/juvarthr.htm A few months ago, I attended a conference on Pain Management in Women across the Lifecycle. During that conference, we heard a fabulous talk from Dr Chesney, a physician at NIH (National Institutes of Health) CAM - complementaty./alternative medicine.. think that is what it stands for, They are working on aggressively studying alternative treatments and making sure that alternative medicine companies are having the dose of whatever it is selling where it should be or proclaimed. They also have a custom care lines and stuff for physicians to call and can look for potential interactions between 'alternative' and western medications. Let me see if I can find their website... aha.. here it is: http://nccam.nih.gov/ For JRA, my understanding is that Glucosomine/chrondrotin is not helpful. It has been indicated to help protect bone loss in Osteoarthritis but not with JRA/RA diseases. I have heard, from my rheumatologist and others at the AJAO- American Juvenile Arthritis Organization conferences that borage or evening primrose oil has been indicated in decreasing inflammation in the long-term. It docent replace the treatment with anti inflammatories but seems to help. Im sure the nccam source might be useful here as well. Antibiotic therapy is another thing I don't know much about except just like most things.. it works for some and not for others. I've heard loads of good stuff about acupuncture as helping relaxation and pain relief but i haven't tried it yet. There is quite a bit of research showing support for its use and many insurances will now cover it. My anesthesiologist at the pain clinic does acupuncture as well. It has been show th provide pain relief for some people. Massage is nice... Swimming and other pool activities are Excellent! Physical therapy is also used a lot to maintain joint motion, etc. Since she is in sports, I guess that isnt such a challenge at the time. Exercise, rest, ice, and stuff really helps in joint care. NSAIDS vary by the drug and the weight of the person. MTX dose doesn't sound too high but research indicates again that aggressive treatment increases the best possible chance of positive outcome. This disease CAN be very destructive if not treated properly. The fact that she already has erosion showing on the bone scan is indicative of more aggressive disease. I do n't know when she should have another bone scan but good question to ask her doctor. My peds rheumy I had for many years also went by the philosophy of allowing those with JA to do whatever they can.. stay in sports... whatever activities.... as they help sometimes physically and def. mentally. Im sure she will learn her limits as time goes on. Hopefully with treatment, she will feel better soon. If not, there are lots of options. Im sure its hard being a teen just diagnosed with JRA or any rheumatic disease for that matter. When she is ready, maybe she will want to read more about it. Education on the disease can be really helpful in coping and making decisions but only when she is ready. I think its easy and common for people to want to just.. well kids especially to want to just forget about it so it 'doesn't exist'... the seek for control, etc. These days.. the treatments options are much better and can have very positive results. OF course, this doesn't happen for everyone but I suppose it comes down to taking it one day at a time while being proactive. The local Arthritis Foundation might have some support groups or other things that can help you and her. Anyways... hope these sources help you and arent more overwhelming! Issadora (PolyJRA- 5, Fibromyalgia- 7) Currently 28 On 8/12/06, Abbott <lauabb16@...> wrote: > > Hi, > > My name is , and I have a 13 year old daughter who was diagnosed with > JRA at the beginning of the summer. She is tall for her age and has been > very active in sports. During softball season in the spring, she began > limping with her left foot. After several x-rays, bone scans, etc....she was > referred to Augusta Medical College and the diagnosis was confirmed. We have > been there for two visits, about a month apart. Carolyn is starting > methetrexate and is taking 2 pills a week at this point. She continues to > limp somewhat and is on Neproxen, too. Her knees were also swollen, but they > seem to be much better. It has been a difficult summer for me...the sadness > I feel for her is overwhelming. Carolyn, on the other hand, continues to be > very social with her friends and doesn't talk a lot about the arthritis. She > said that she wasn't going to let this ruin her life. I find it very > difficult at this point because there are so many things I read that seem > confusing > or contradictory...and I don't seem to be getting answers to the many > questions spinning around in my head. I have read about supplements, > preferred foods, acupuncture, massage, etc.... > > Is there anything that can be done to keep the medicine at a lower dose, > or is it just based on her weight? > > Does anyone know anything about antibiotic therapy?? > > She will be trying out for volleyball in the fall and wants to play > basketball again after that. The doctor said to let her do what she feels > that she can... > > Are there any supplements that are especially helpful? > > Carolyn's original bone scan showed that there was already some erosion > going on in her foot. At what point should she have another scan to see how > she is doing?? How do you know if it has spread to another part of the > body?? > > Is Glucosamine, Chondroitin, and MSM equally helpful to the Naproxen?? > > Are there any supplements she should take for her eyes?? > > Does anyone take the hydrolyzed collagen protein HCP?? > > Any advice would be appreciated. > > Thank you for your help, > > > > > --------------------------------- > Stay in the know. Pulse on the new .com <http:///>. Check it > out. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Hi , My name is and I have been on vacation for a bit but am just checking thru posts and came across yours. I wanted to take a moment to welcome you to our group and to encourage you that things will get better. Its so very hard in the beginning. My daughter is 11 and had had systemic jra for almost 4 years now. She was treated with methotrextate (mtx) and she did awesome for nearly a year. You would never even know that she had joint pain and she was able to particpate in any activity. Her only challenge was the side effect of medication. Most kids seem to do wondeful with mtx and not deal with many side effects, Aundrea did not fall in that category. So, last Dec. we took her off the mtx and by April she again began having joint pain. We just restarted the mtx about 4 weeks ago. She gets in by injection and we also started giving her anti-nausea meds that really seem to be helping. It seems like your doctors are progressing nicely. They are following a normal course of action by starting with the naproxen and then quickly added mtx. They are increasing her dose regularly and seeing how she tolerates it. Thats a good thing. My daughter is 5 '2 " and weighs 106 lbs. She takes 15 mg. weekly. Because mtx can take a few months to reach its full effectiveness we plan to hold out for awhile and see if this dose is working good for her, if not then we will increase it a bit more. Is your daughter taking folic acid every day? If not, then you should mention this to your dr. It helps to cut down on side effects. We also give this med to Aundrea on Fridays because it causes her to be a bit sleepy so this way she has the weekend to kind of relax and not be so sleepy during school. Is your dtr. getting frequent lab draws now that she is on mtx? Typically, lab work is ordered every 6-8 weeks to monitor her liver enzymes and make sure that the mtx is having any adverse effects. I hope that for your daughter mtx will be all she needs to get her back in the game of life and feeling great! You mentioned supplements. We do quite a bit with that and our rheumatologist also suggests some such as fish oil. We give Aundrea a supplement that has more omega 3's than fish oil and it also has prim rose and ginger which are suppose to help with inflammation. She is also under chiropractic care. If you have any other questions on this please feel free to email me here or personally...sonia1md@... Blessings, (Aundrea 11 systemic jra)- -- In , Abbott <lauabb16@...> wrote: > > Hi Issadora, > > Thank you so much for your reply. The doctor indicated that she has polyarticular JRA...my husband also has psoriasis so that is a possibility but Carolyn does not have the skin condition to go with a diagnosis. So far, it seems to be primarily in her foot and knees. Her right hand was initially weaker than her left, but there has been no swelling or complaints. Now both hands are equally strong. > > I am very concerned that we are going too slowly. She was on Naproxen for about 5 weeks; we have just started methetrexate. The last two weeks she only had 1 pill each week. This last week, she had 2 pills (5mg) and will have another 2 this week. Then we go to 3 pills. The doctor indicated that we may need enbrall. The initial doctor reports indicated that her disease was aggressive at that time; yet there seems to be a standard procedure that they go through. Carolyn is a little taller than I am (5' 6 " or 7 " ) and weighs about 125 pounds. She looks more like a 16 year old than a 13 year old. She is basically adult size. I have thought about going to a different doctor, but I don't know if this pace is standard procedure. We are in Savannah, GA, and the nearest doctor is in Augusta (3 and 1/2 hours away). We could also go to Atlanta. I have looked into ville, FLA, but didn't have any luck. I am not sure about Columbia, SC. What is your opinion about > this?? > > Again, thank you so much for your help. I will look into the information you have provided. > > Abbott > > Issadora <FlyfreeIzzie@...> wrote: > Hello- > > Welcome to the group. Im glad that you have found this place despite the > sadness behind the reason that you have. > > Does your daughter have polyarticular JRA? or ??? > What sites have you been looking at for information? Especially getting > contradictory stuff? > > The arthritis foundation can give you the basics and info about supplements > as well. > www.arthritis.org > > Here is another source of information that has a link to a lot of other > credible ones: > http://www.niams.nih.gov/hi/topics/juvenile_arthritis/juvarthr.htm > > A few months ago, I attended a conference on Pain Management in Women across > the Lifecycle. During that conference, we heard a fabulous talk from Dr > Chesney, a physician at NIH (National Institutes of Health) CAM - > complementaty./alternative medicine.. think that is what it stands for, They > are working on aggressively studying alternative treatments and making sure > that alternative medicine companies are having the dose of whatever it is > selling where it should be or proclaimed. They also have a custom care lines > and stuff for physicians to call and can look for potential interactions > between 'alternative' and western medications. Let me see if I can find > their website... aha.. here it is: > http://nccam.nih.gov/ > > For JRA, my understanding is that Glucosomine/chrondrotin is not helpful. It > has been indicated to help protect bone loss in Osteoarthritis but not with > JRA/RA diseases. > > I have heard, from my rheumatologist and others at the AJAO- American > Juvenile Arthritis Organization conferences that borage or evening primrose > oil has been indicated in decreasing inflammation in the long- term. It > docent replace the treatment with anti inflammatories but seems to help. Im > sure the nccam source might be useful here as well. > > Antibiotic therapy is another thing I don't know much about except just like > most things.. it works for some and not for others. > > I've heard loads of good stuff about acupuncture as helping relaxation and > pain relief but i haven't tried it yet. There is quite a bit of research > showing support for its use and many insurances will now cover it. My > anesthesiologist at the pain clinic does acupuncture as well. It has been > show th provide pain relief for some people. > > Massage is nice... Swimming and other pool activities are Excellent! > Physical therapy is also used a lot to maintain joint motion, etc. Since she > is in sports, I guess that isnt such a challenge at the time. > > Exercise, rest, ice, and stuff really helps in joint care. > > NSAIDS vary by the drug and the weight of the person. MTX dose doesn't sound > too high but research indicates again that aggressive treatment increases > the best possible chance of positive outcome. This disease CAN be very > destructive if not treated properly. The fact that she already has erosion > showing on the bone scan is indicative of more aggressive disease. I do n't > know when she should have another bone scan but good question to ask her > doctor. > > My peds rheumy I had for many years also went by the philosophy of allowing > those with JA to do whatever they can.. stay in sports... whatever > activities.... as they help sometimes physically and def. mentally. Im sure > she will learn her limits as time goes on. Hopefully with treatment, she > will feel better soon. If not, there are lots of options. Im sure its hard > being a teen just diagnosed with JRA or any rheumatic disease for that > matter. When she is ready, maybe she will want to read more about it. > Education on the disease can be really helpful in coping and making > decisions but only when she is ready. I think its easy and common for people > to want to just.. well kids especially to want to just forget about it so it > 'doesn't exist'... the seek for control, etc. These days.. the treatments > options are much better and can have very positive results. OF course, this > doesn't happen for everyone but I suppose it comes down to taking it one day > at a time while being proactive. > > The local Arthritis Foundation might have some support groups or other > things that can help you and her. > > Anyways... hope these sources help you and arent more overwhelming! > > Issadora (PolyJRA- 5, Fibromyalgia- 7) > Currently 28 > > On 8/12/06, Abbott <lauabb16@...> wrote: > > > > Hi, > > > > My name is , and I have a 13 year old daughter who was diagnosed with > > JRA at the beginning of the summer. She is tall for her age and has been > > very active in sports. During softball season in the spring, she began > > limping with her left foot. After several x-rays, bone scans, etc....she was > > referred to Augusta Medical College and the diagnosis was confirmed. We have > > been there for two visits, about a month apart. Carolyn is starting > > methetrexate and is taking 2 pills a week at this point. She continues to > > limp somewhat and is on Neproxen, too. Her knees were also swollen, but they > > seem to be much better. It has been a difficult summer for me...the sadness > > I feel for her is overwhelming. Carolyn, on the other hand, continues to be > > very social with her friends and doesn't talk a lot about the arthritis. She > > said that she wasn't going to let this ruin her life. I find it very > > difficult at this point because there are so many things I read that seem > > confusing > > or contradictory...and I don't seem to be getting answers to the many > > questions spinning around in my head. I have read about supplements, > > preferred foods, acupuncture, massage, etc.... > > > > Is there anything that can be done to keep the medicine at a lower dose, > > or is it just based on her weight? > > > > Does anyone know anything about antibiotic therapy?? > > > > She will be trying out for volleyball in the fall and wants to play > > basketball again after that. The doctor said to let her do what she feels > > that she can... > > > > Are there any supplements that are especially helpful? > > > > Carolyn's original bone scan showed that there was already some erosion > > going on in her foot. At what point should she have another scan to see how > > she is doing?? How do you know if it has spread to another part of the > > body?? > > > > Is Glucosamine, Chondroitin, and MSM equally helpful to the Naproxen?? > > > > Are there any supplements she should take for her eyes?? > > > > Does anyone take the hydrolyzed collagen protein HCP?? > > > > Any advice would be appreciated. > > > > Thank you for your help, > > > > > > > > > > --------------------------------- > > Stay in the know. Pulse on the new .com <http:///>. Check it > > out. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Is the doctor a board certified pediatric rheumatologist? I think sometimes it helps to get a 2nd opinion if possible. The fact that he's treating with MTX is good. The ussual first line is NSAIDS and than add MTX if no results but the fact that her disease seems more aggressive is a concern. You can always ask him if he believes in aggressive treatment since that is what has been shown to have the best outcome and you are concerned with the slow progress. It is generaly acceptable practice of peds rheumatologist to work with this disease aggressively esp when bone damge is already present. , I think mentioned Folic acid. I totaly forgot about that! It does concern me that they rheumatologist didnt put her on thos automatic. I guess I am biased by the practice of my ex peds rheumy who always makes things like this standard. The two are never inseperable. Your daughter sounds really tall. Hehe.... that's cool. Im short.. haha. The MTX doses are always on the low side.. or at least 'sound' like they are but really the doses like 5mg and such is pretty typical. Some are on 7mg... some take more or less.... some do the injectable b/c it seems to work better or have less side effects. I think it will help to do a lot of reading on this and asking lots of questions to the doctor and/or making sure you find someone who really knows what they are doing. If your daughters doctor now is not a board certified pediatric rheumatologist..... I would def. look for another one even if its for a 2nd opinion or consult. Issadora On 8/13/06, Abbott <lauabb16@...> wrote: > > Hi Issadora, > > Thank you so much for your reply. The doctor indicated that she has > polyarticular JRA...my husband also has psoriasis so that is a possibility > but Carolyn does not have the skin condition to go with a diagnosis. So far, > it seems to be primarily in her foot and knees. Her right hand was initially > weaker than her left, but there has been no swelling or complaints. Now both > hands are equally strong. > > I am very concerned that we are going too slowly. She was on Naproxen for > about 5 weeks; we have just started methetrexate. The last two weeks she > only had 1 pill each week. This last week, she had 2 pills (5mg) and will > have another 2 this week. Then we go to 3 pills. The doctor indicated that > we may need enbrall. The initial doctor reports indicated that her disease > was aggressive at that time; yet there seems to be a standard procedure that > they go through. Carolyn is a little taller than I am (5' 6 " or 7 " ) and > weighs about 125 pounds. She looks more like a 16 year old than a 13 year > old. She is basically adult size. I have thought about going to a different > doctor, but I don't know if this pace is standard procedure. We are in > Savannah, GA, and the nearest doctor is in Augusta (3 and 1/2 hours away). > We could also go to Atlanta. I have looked into ville, FLA, but > didn't have any luck. I am not sure about Columbia, SC. What is your opinion > about > this?? > > Again, thank you so much for your help. I will look into the information > you have provided. > > Abbott > > Issadora <FlyfreeIzzie@... <FlyfreeIzzie%40gmail.com>> wrote: > Hello- > > Welcome to the group. Im glad that you have found this place despite the > sadness behind the reason that you have. > > Does your daughter have polyarticular JRA? or ??? > What sites have you been looking at for information? Especially getting > contradictory stuff? > > The arthritis foundation can give you the basics and info about > supplements > as well. > www.arthritis.org > > Here is another source of information that has a link to a lot of other > credible ones: > http://www.niams.nih.gov/hi/topics/juvenile_arthritis/juvarthr.htm > > A few months ago, I attended a conference on Pain Management in Women > across > the Lifecycle. During that conference, we heard a fabulous talk from Dr > Chesney, a physician at NIH (National Institutes of Health) CAM - > complementaty./alternative medicine.. think that is what it stands for, > They > are working on aggressively studying alternative treatments and making > sure > that alternative medicine companies are having the dose of whatever it is > selling where it should be or proclaimed. They also have a custom care > lines > and stuff for physicians to call and can look for potential interactions > between 'alternative' and western medications. Let me see if I can find > their website... aha.. here it is: > http://nccam.nih.gov/ > > For JRA, my understanding is that Glucosomine/chrondrotin is not helpful. > It > has been indicated to help protect bone loss in Osteoarthritis but not > with > JRA/RA diseases. > > I have heard, from my rheumatologist and others at the AJAO- American > Juvenile Arthritis Organization conferences that borage or evening > primrose > oil has been indicated in decreasing inflammation in the long-term. It > docent replace the treatment with anti inflammatories but seems to help. > Im > sure the nccam source might be useful here as well. > > Antibiotic therapy is another thing I don't know much about except just > like > most things.. it works for some and not for others. > > I've heard loads of good stuff about acupuncture as helping relaxation and > pain relief but i haven't tried it yet. There is quite a bit of research > showing support for its use and many insurances will now cover it. My > anesthesiologist at the pain clinic does acupuncture as well. It has been > show th provide pain relief for some people. > > Massage is nice... Swimming and other pool activities are Excellent! > Physical therapy is also used a lot to maintain joint motion, etc. Since > she > is in sports, I guess that isnt such a challenge at the time. > > Exercise, rest, ice, and stuff really helps in joint care. > > NSAIDS vary by the drug and the weight of the person. MTX dose doesn't > sound > too high but research indicates again that aggressive treatment increases > the best possible chance of positive outcome. This disease CAN be very > destructive if not treated properly. The fact that she already has erosion > showing on the bone scan is indicative of more aggressive disease. I do > n't > know when she should have another bone scan but good question to ask her > doctor. > > My peds rheumy I had for many years also went by the philosophy of > allowing > those with JA to do whatever they can.. stay in sports... whatever > activities.... as they help sometimes physically and def. mentally. Im > sure > she will learn her limits as time goes on. Hopefully with treatment, she > will feel better soon. If not, there are lots of options. Im sure its hard > being a teen just diagnosed with JRA or any rheumatic disease for that > matter. When she is ready, maybe she will want to read more about it. > Education on the disease can be really helpful in coping and making > decisions but only when she is ready. I think its easy and common for > people > to want to just.. well kids especially to want to just forget about it so > it > 'doesn't exist'... the seek for control, etc. These days.. the treatments > options are much better and can have very positive results. OF course, > this > doesn't happen for everyone but I suppose it comes down to taking it one > day > at a time while being proactive. > > The local Arthritis Foundation might have some support groups or other > things that can help you and her. > > Anyways... hope these sources help you and arent more overwhelming! > > Issadora (PolyJRA- 5, Fibromyalgia- 7) > Currently 28 > > On 8/12/06, Abbott <lauabb16@... <lauabb16%40>> > wrote: > > > > Hi, > > > > My name is , and I have a 13 year old daughter who was diagnosed > with > > JRA at the beginning of the summer. She is tall for her age and has been > > very active in sports. During softball season in the spring, she began > > limping with her left foot. After several x-rays, bone scans, etc....she > was > > referred to Augusta Medical College and the diagnosis was confirmed. We > have > > been there for two visits, about a month apart. Carolyn is starting > > methetrexate and is taking 2 pills a week at this point. She continues > to > > limp somewhat and is on Neproxen, too. Her knees were also swollen, but > they > > seem to be much better. It has been a difficult summer for me...the > sadness > > I feel for her is overwhelming. Carolyn, on the other hand, continues to > be > > very social with her friends and doesn't talk a lot about the arthritis. > She > > said that she wasn't going to let this ruin her life. I find it very > > difficult at this point because there are so many things I read that > seem > > confusing > > or contradictory...and I don't seem to be getting answers to the many > > questions spinning around in my head. I have read about supplements, > > preferred foods, acupuncture, massage, etc.... > > > > Is there anything that can be done to keep the medicine at a lower dose, > > or is it just based on her weight? > > > > Does anyone know anything about antibiotic therapy?? > > > > She will be trying out for volleyball in the fall and wants to play > > basketball again after that. The doctor said to let her do what she > feels > > that she can... > > > > Are there any supplements that are especially helpful? > > > > Carolyn's original bone scan showed that there was already some erosion > > going on in her foot. At what point should she have another scan to see > how > > she is doing?? How do you know if it has spread to another part of the > > body?? > > > > Is Glucosamine, Chondroitin, and MSM equally helpful to the Naproxen?? > > > > Are there any supplements she should take for her eyes?? > > > > Does anyone take the hydrolyzed collagen protein HCP?? > > > > Any advice would be appreciated. > > > > Thank you for your help, > > > > > > > > > > --------------------------------- > > Stay in the know. Pulse on the new .com <http:///> < > http:///>. Check it > > out. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 , welcome to the group. I am . I am 36 and had JRA since I was 3. I am BY NO MEANS a dr and everyone will have different results - this being said - a friend of mine recommended Gluchosamine/Chondroitin and it has had amazing results for me. I already have the deformities due to this disease , but Glucho makes it possible for me to feel really great- if I miss a dose or run out I can definitely tell a difference in as little as 3 days. I am currently on predisone (1.5 mg) and Celebrex (400 mg per day). Hope to get to know you better. Any questions - feel free to ask. love, prayers, and blessings (age 36 - dx poly @ age 3) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 , Happy to have you here with us. So sorry that you now have JA to deal with. My daughter, Sophie, was diagnosed shortly after her 3rd birthday with pauciarticular JRA (JIA - whatever the heck it's supposed to be, now) It affects her left foot and ankle, right knee, and her neck. She also has the eye disease that is often associated with it, Uveitis. Sophie just turned 5 and hasn't let arthritis slow her down one bit. She takes weekly mtx, daily folic acid, and twice daily steroid drops for her eyes. (Though I truly think that will be bumped up at the end of this month when we see her ophthalmologist. I think she's flaring again. She's said a white flower was blue when outside the other day and then walked into the wall instead of the door when going into a pool bathroom...) I'm about to walk out the door but I wanted to jot down a few quick notes while they are floating around in my head: *pediatric rheumatologist* - if the doctor you are currently seeing is not a board certified pediatric rheumy, please find the closest to your home and get the first available appt. you can. They are, unfortunately, few and far between but worth every minute of the drive! *It's Not Just Growing Pains* - a book by Lehman which I found to be extremely helpful - especially in the early stages of Sophie's diagnosis. I still refer to it quite often and we are into Soph's 3rd year of JA. It's very comprehensive. Questions? This book will probably cover them to some degree. *regular blood draws* - Is Carolyn getting them? Soph usually has her drawn anywhere from every 4-6 weeks. This is one of the best indicators as to how the meds and such are working and the body's tolerance of them (Sophie's liver count is usually up and down. Her mtx must be adjusted accordingly.) *pediatric ophthalmologist* - again, make sure you go to specifically a pediatric ophthalmologist to have Carolyn's eye's checked. This is the aspect of JRA that Sophie has the most trouble with. Her joints have been quiet for some time but we can't seem to get her eyes to stay constantly quiet. If left untreated, uveitis is ultimately blinding. Depending on your daughter, you should get checkups every 4 to 6 weeks or every 3 months or so. (Sophie generally sticks to every 4 weeks and can get away with every 8 when her eyes are quiet.) I can't stress enough just how important this part is when dealing with JA!!!!!!!! *steroid injections* - These can be given directly into the joints that are flaring with arthritis. The relief is almost immediate. Sophie had this done in her left foot and ankle, as well as her right knee and had great success with it! It is an out patient procedure but again is worth looking into! This is what I feel saved Sophie's foot from permanent damage. I'm sure I'm forgetting some of what I wanted to send your way but hopefully the others will pick up where I left off. They are a great bunch of supportive, encouraging, informative, understanding, and loving people. Don't hesitate to throw whatever you've got at them. They really know there stuff. Take a deep breath, get as informed as possible, and get ready for the race. I wish I could call it a sprint but this definitely falls in the category of a marathon. Take care. My thoughts are with your daughter and you. Weber Professional Mom to: Sophie (5) - pauci/panuveitis - JRA super fighter Charlie (1) - " The Bird " www.caringbridge.org/visit/teamsophie On 8/13/06, Issadora <FlyfreeIzzie@...> wrote: > > Is the doctor a board certified pediatric rheumatologist? > > I think sometimes it helps to get a 2nd opinion if possible. The fact that > he's treating with MTX is good. The ussual first line is NSAIDS and than > add > MTX if no results but the fact that her disease seems more aggressive is a > concern. > > You can always ask him if he believes in aggressive treatment since that > is > what has been shown to have the best outcome and you are concerned with > the > slow progress. It is generaly acceptable practice of peds rheumatologist > to > work with this disease aggressively esp when bone damge is already > present. > > , I think mentioned Folic acid. I totaly forgot about that! It does > concern me that they rheumatologist didnt put her on thos automatic. I > guess > I am biased by the practice of my ex peds rheumy who always makes things > like this standard. The two are never inseperable. > > Your daughter sounds really tall. Hehe.... that's cool. Im short.. haha. > The > MTX doses are always on the low side.. or at least 'sound' like they are > but > really the doses like 5mg and such is pretty typical. Some are on 7mg... > some take more or less.... some do the injectable b/c it seems to work > better or have less side effects. I think it will help to do a lot of > reading on this and asking lots of questions to the doctor and/or making > sure you find someone who really knows what they are doing. If your > daughters doctor now is not a board certified pediatric > rheumatologist..... > I would def. look for another one even if its for a 2nd opinion or > consult. > > Issadora > > > On 8/13/06, Abbott <lauabb16@... <lauabb16%40>> > wrote: > > > > Hi Issadora, > > > > Thank you so much for your reply. The doctor indicated that she has > > polyarticular JRA...my husband also has psoriasis so that is a > possibility > > but Carolyn does not have the skin condition to go with a diagnosis. So > far, > > it seems to be primarily in her foot and knees. Her right hand was > initially > > weaker than her left, but there has been no swelling or complaints. Now > both > > hands are equally strong. > > > > I am very concerned that we are going too slowly. She was on Naproxen > for > > about 5 weeks; we have just started methetrexate. The last two weeks she > > only had 1 pill each week. This last week, she had 2 pills (5mg) and > will > > have another 2 this week. Then we go to 3 pills. The doctor indicated > that > > we may need enbrall. The initial doctor reports indicated that her > disease > > was aggressive at that time; yet there seems to be a standard procedure > that > > they go through. Carolyn is a little taller than I am (5' 6 " or 7 " ) and > > weighs about 125 pounds. She looks more like a 16 year old than a 13 > year > > old. She is basically adult size. I have thought about going to a > different > > doctor, but I don't know if this pace is standard procedure. We are in > > Savannah, GA, and the nearest doctor is in Augusta (3 and 1/2 hours > away). > > We could also go to Atlanta. I have looked into ville, FLA, but > > didn't have any luck. I am not sure about Columbia, SC. What is your > opinion > > about > > this?? > > > > Again, thank you so much for your help. I will look into the information > > you have provided. > > > > Abbott > > > > Issadora <FlyfreeIzzie@... <FlyfreeIzzie%40gmail.com><FlyfreeIzzie% > 40gmail.com>> wrote: > > Hello- > > > > Welcome to the group. Im glad that you have found this place despite the > > sadness behind the reason that you have. > > > > Does your daughter have polyarticular JRA? or ??? > > What sites have you been looking at for information? Especially getting > > contradictory stuff? > > > > The arthritis foundation can give you the basics and info about > > supplements > > as well. > > www.arthritis.org > > > > Here is another source of information that has a link to a lot of other > > credible ones: > > http://www.niams.nih.gov/hi/topics/juvenile_arthritis/juvarthr.htm > > > > A few months ago, I attended a conference on Pain Management in Women > > across > > the Lifecycle. During that conference, we heard a fabulous talk from Dr > > Chesney, a physician at NIH (National Institutes of Health) CAM - > > complementaty./alternative medicine.. think that is what it stands for, > > They > > are working on aggressively studying alternative treatments and making > > sure > > that alternative medicine companies are having the dose of whatever it > is > > selling where it should be or proclaimed. They also have a custom care > > lines > > and stuff for physicians to call and can look for potential interactions > > between 'alternative' and western medications. Let me see if I can find > > their website... aha.. here it is: > > http://nccam.nih.gov/ > > > > For JRA, my understanding is that Glucosomine/chrondrotin is not > helpful. > > It > > has been indicated to help protect bone loss in Osteoarthritis but not > > with > > JRA/RA diseases. > > > > I have heard, from my rheumatologist and others at the AJAO- American > > Juvenile Arthritis Organization conferences that borage or evening > > primrose > > oil has been indicated in decreasing inflammation in the long-term. It > > docent replace the treatment with anti inflammatories but seems to help. > > Im > > sure the nccam source might be useful here as well. > > > > Antibiotic therapy is another thing I don't know much about except just > > like > > most things.. it works for some and not for others. > > > > I've heard loads of good stuff about acupuncture as helping relaxation > and > > pain relief but i haven't tried it yet. There is quite a bit of research > > showing support for its use and many insurances will now cover it. My > > anesthesiologist at the pain clinic does acupuncture as well. It has > been > > show th provide pain relief for some people. > > > > Massage is nice... Swimming and other pool activities are Excellent! > > Physical therapy is also used a lot to maintain joint motion, etc. Since > > she > > is in sports, I guess that isnt such a challenge at the time. > > > > Exercise, rest, ice, and stuff really helps in joint care. > > > > NSAIDS vary by the drug and the weight of the person. MTX dose doesn't > > sound > > too high but research indicates again that aggressive treatment > increases > > the best possible chance of positive outcome. This disease CAN be very > > destructive if not treated properly. The fact that she already has > erosion > > showing on the bone scan is indicative of more aggressive disease. I do > > n't > > know when she should have another bone scan but good question to ask her > > doctor. > > > > My peds rheumy I had for many years also went by the philosophy of > > allowing > > those with JA to do whatever they can.. stay in sports... whatever > > activities.... as they help sometimes physically and def. mentally. Im > > sure > > she will learn her limits as time goes on. Hopefully with treatment, she > > will feel better soon. If not, there are lots of options. Im sure its > hard > > being a teen just diagnosed with JRA or any rheumatic disease for that > > matter. When she is ready, maybe she will want to read more about it. > > Education on the disease can be really helpful in coping and making > > decisions but only when she is ready. I think its easy and common for > > people > > to want to just.. well kids especially to want to just forget about it > so > > it > > 'doesn't exist'... the seek for control, etc. These days.. the > treatments > > options are much better and can have very positive results. OF course, > > this > > doesn't happen for everyone but I suppose it comes down to taking it one > > day > > at a time while being proactive. > > > > The local Arthritis Foundation might have some support groups or other > > things that can help you and her. > > > > Anyways... hope these sources help you and arent more overwhelming! > > > > Issadora (PolyJRA- 5, Fibromyalgia- 7) > > Currently 28 > > > > On 8/12/06, Abbott <lauabb16@... <lauabb16%40><lauabb16%40>> > > > wrote: > > > > > > Hi, > > > > > > My name is , and I have a 13 year old daughter who was diagnosed > > with > > > JRA at the beginning of the summer. She is tall for her age and has > been > > > very active in sports. During softball season in the spring, she began > > > limping with her left foot. After several x-rays, bone scans, > etc....she > > was > > > referred to Augusta Medical College and the diagnosis was confirmed. > We > > have > > > been there for two visits, about a month apart. Carolyn is starting > > > methetrexate and is taking 2 pills a week at this point. She continues > > to > > > limp somewhat and is on Neproxen, too. Her knees were also swollen, > but > > they > > > seem to be much better. It has been a difficult summer for me...the > > sadness > > > I feel for her is overwhelming. Carolyn, on the other hand, continues > to > > be > > > very social with her friends and doesn't talk a lot about the > arthritis. > > She > > > said that she wasn't going to let this ruin her life. I find it very > > > difficult at this point because there are so many things I read that > > seem > > > confusing > > > or contradictory...and I don't seem to be getting answers to the many > > > questions spinning around in my head. I have read about supplements, > > > preferred foods, acupuncture, massage, etc.... > > > > > > Is there anything that can be done to keep the medicine at a lower > dose, > > > or is it just based on her weight? > > > > > > Does anyone know anything about antibiotic therapy?? > > > > > > She will be trying out for volleyball in the fall and wants to play > > > basketball again after that. The doctor said to let her do what she > > feels > > > that she can... > > > > > > Are there any supplements that are especially helpful? > > > > > > Carolyn's original bone scan showed that there was already some > erosion > > > going on in her foot. At what point should she have another scan to > see > > how > > > she is doing?? How do you know if it has spread to another part of the > > > body?? > > > > > > Is Glucosamine, Chondroitin, and MSM equally helpful to the Naproxen?? > > > > > > Are there any supplements she should take for her eyes?? > > > > > > Does anyone take the hydrolyzed collagen protein HCP?? > > > > > > Any advice would be appreciated. > > > > > > Thank you for your help, > > > > > > > > > > > > > > > --------------------------------- > > > Stay in the know. Pulse on the new .com <http:///> < > http:///> < > > http:///>. Check it > > > out. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 , Every person on this board understands your pain. It is a very difficult time in your life knowing your child in afflicted with a debilitating disease. Hopefully it will all calm down for you soon, and your daughter will find some relief with medications on the market. My daughter was diagnosed at age 6. We had no idea that kids got arthritis. When we look back on the whole picture we can see some signs, but nothing that would jump out and bite us! Our daughter had a wrist that didn't move by the time we were diagnosed. It was VERY scary. My point is, my daughter is VERY active. She plays ice hockey, figure skates, dances, plays soccer, and plays the piano. We feel that she is better when she is active. We don't seem to have flares when she is active. As long as she isn't damaging her bones, I would tell you to let her remain active. These kids deserve a normal life, just like their friends. Allie is on methotrexate, pheldine, folic acid, and humira. Keep talking to the members of the board. They understand exactly what you are going thru. and Allie (10 poly) ________________________________ From: [mailto: ] On Behalf Of Abbott Sent: Saturday, August 12, 2006 9:45 PM Subject: new member Hi, My name is , and I have a 13 year old daughter who was diagnosed with JRA at the beginning of the summer. She is tall for her age and has been very active in sports. During softball season in the spring, she began limping with her left foot. After several x-rays, bone scans, etc....she was referred to Augusta Medical College and the diagnosis was confirmed. We have been there for two visits, about a month apart. Carolyn is starting methetrexate and is taking 2 pills a week at this point. She continues to limp somewhat and is on Neproxen, too. Her knees were also swollen, but they seem to be much better. It has been a difficult summer for me...the sadness I feel for her is overwhelming. Carolyn, on the other hand, continues to be very social with her friends and doesn't talk a lot about the arthritis. She said that she wasn't going to let this ruin her life. I find it very difficult at this point because there are so many things I read that seem confusing or contradictory...and I don't seem to be getting answers to the many questions spinning around in my head. I have read about supplements, preferred foods, acupuncture, massage, etc.... Is there anything that can be done to keep the medicine at a lower dose, or is it just based on her weight? Does anyone know anything about antibiotic therapy?? She will be trying out for volleyball in the fall and wants to play basketball again after that. The doctor said to let her do what she feels that she can... Are there any supplements that are especially helpful? Carolyn's original bone scan showed that there was already some erosion going on in her foot. At what point should she have another scan to see how she is doing?? How do you know if it has spread to another part of the body?? Is Glucosamine, Chondroitin, and MSM equally helpful to the Naproxen?? Are there any supplements she should take for her eyes?? Does anyone take the hydrolyzed collagen protein HCP?? Any advice would be appreciated. Thank you for your help, --------------------------------- Stay in the know. Pulse on the new .com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 Hi, , and welcome to the group. Your daughter is the same age, activity level, and disease symptoms as my son was when he was diagnosed. You have already received lots of great advice, so I won't add too much. Just some thoughts - it is good that the dr is being aggressive and starting the MTX right away. The folic acid in the multi vitamin may be enough, as long as she takes it regularly. My son's biggest side effect was mouth sores and the folic acid helped those, along with gargling with Listerine. Please get your daughter to an eye dr ASAP as uveitis cannot be detected without a slit lamp test. Her eyes should be checked regularly for any inflammation. Let the eye dr know that she has been diagnosed with JRA and what meds she is on. Chris started going every 3 months but now only needs to go every 6 since he has been clear. As for the various therapies, supplements, etc. you are reading about, just keep in mind that most are for osteoarthritis while our kids have an immune system disease of one kind or another. My son, for example, was originally diagnosed with pauci jra, but as his symptoms manifested, his diagnosis is now anklosing spondylitis, or spondyloarthropy. So what would work for my mother with osteoarthritis may not help my son, whose immune system is what is causing his problems. I am sorry to hear of another child being diagnosed. Please know that this list is a great place of support. We are all at various stages of things, with kids at various ages. Chances are someone here has been through whatever you may need help with. This is a safe place to vent, when it all gets too much. We all " get it " in ways others may not. Again, welcome. Michele (19,spondy) ________________________________ From: [mailto: ] On Behalf Of Abbott Sent: Saturday, August 12, 2006 9:45 PM Subject: new member Hi, My name is , and I have a 13 year old daughter who was diagnosed with JRA at the beginning of the summer. She is tall for her age and has been very active in sports. During softball season in the spring, she began limping with her left foot. After several x-rays, bone scans, etc....she was referred to Augusta Medical College and the diagnosis was confirmed. We have been there for two visits, about a month apart. Carolyn is starting methetrexate and is taking 2 pills a week at this point. She continues to limp somewhat and is on Neproxen, too. Her knees were also swollen, but they seem to be much better. It has been a difficult summer for me...the sadness I feel for her is overwhelming. Carolyn, on the other hand, continues to be very social with her friends and doesn't talk a lot about the arthritis. She said that she wasn't going to let this ruin her life. I find it very difficult at this point because there are so many things I read that seem confusing or contradictory...and I don't seem to be getting answers to the many questions spinning around in my head. I have read about supplements, preferred foods, acupuncture, massage, etc.... Is there anything that can be done to keep the medicine at a lower dose, or is it just based on her weight? Does anyone know anything about antibiotic therapy?? She will be trying out for volleyball in the fall and wants to play basketball again after that. The doctor said to let her do what she feels that she can... Are there any supplements that are especially helpful? Carolyn's original bone scan showed that there was already some erosion going on in her foot. At what point should she have another scan to see how she is doing?? How do you know if it has spread to another part of the body?? Is Glucosamine, Chondroitin, and MSM equally helpful to the Naproxen?? Are there any supplements she should take for her eyes?? Does anyone take the hydrolyzed collagen protein HCP?? Any advice would be appreciated. Thank you for your help, --------------------------------- Stay in the know. Pulse on the new .com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Hi and welcome! I am a few days behind but I wanted to say hello and welcome you to a great group! My name is Donna and I am one of the vets that hangs around. I have had JRA since age 4 , which makes me a 36 yr vet. Please feel free to chat away...... Hang tight , Hang tough Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2006 Report Share Posted October 13, 2006 Carolyn, I am glad you were able to find our group and I am sure that it will be a wonderful resource for you. We did try different diet things with our daughter but never found that it made much of a difference. I do try to give her fish more often because it has the omega 3's and other than that its just a good lean meat. We also give Aundrea a nutritional supplement that contains marine phytoplankton which has more omega 3's than fish oil and it also contains liquid aloe vera, ginger and rose which are all suppose to be good anti-inflammatories. She takes just a 1/2 oz daily and tops it off with a splash of grape juice. Thankfully, the taste is quite tolerable! :-) Aundrea was also on Naproxyn on two different occasions. She didn't tolerate it very well at all, but there are many that do just fine with it. Be on the look out for any GI problems such as tummy aches, decreased appetite or complaints of headaches/dizziness. If these arise let your rheumy know. It may be as simple as adding an antacid to help with any problems. The other thing that you would hear mentioned about Naproxyn is that especially for kids with blue eyes and fair skin they can have a problem with facial scarring. basically problems with healing from any type of cut. Aundrea also bruised quite easily while taking Naproxyn. Like I said before, there are some kids that take Naproxyn and do wonderful with it and don't have a single side effect. but here are just a few for you to be on the look out, so that if a problem does come up you can be aware and address it if needed. P.S. there is also a kids jra group. Its a group where kids can chat with others their age about anything, including what its like to have jra. Its moderated and has remained a very safe forum for kids. If is interested then Helen from this list would take care of getting her approved. Blessings, (Aundrea 11 systemic jra/GERD) > > Hi Everyone, > > My 9 year old daughter was diagnosed with poly JRA yesterday. She has > had problems for about a year now and the diagnosis is not a surprise. > We are hoping to learn and share with all of you. I am interested in > finding our if diet can be used to help JRA. If anyone has info or > links to dietary info for kids I would love it. They started her on > Naproxen yesterday and we will check back in 6 weeks to see how she is > progressing. > > Thanks, > > Carolyn Bayly > Mom to ,9 Poly > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2006 Report Share Posted October 14, 2006 -Welcome Carolyn, You have found an awesome group of parents and adults dealing with JRA. This sites has been my lifeline, Keep reading and askign questions. You are bound to get an answer from someone here. Hugs Helen and (9,systemic) - In , " Carolyn Bayly " <ccbayly@...> wrote: > > Hi Everyone, > > My 9 year old daughter was diagnosed with poly JRA yesterday. She has > had problems for about a year now and the diagnosis is not a surprise. > We are hoping to learn and share with all of you. I am interested in > finding our if diet can be used to help JRA. If anyone has info or > links to dietary info for kids I would love it. They started her on > Naproxen yesterday and we will check back in 6 weeks to see how she is > progressing. > > Thanks, > > Carolyn Bayly > Mom to ,9 Poly > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2006 Report Share Posted December 10, 2006 Welcome , There are other adult vets here that will chime in. It is after 1 a.m. and I am not thinking too clearly but just wanted to say welcome and you will hear from some other JRA vets soon. e, mom to joe 19 poly + lupus jbozart <jbozart@...> wrote: Hi, I'm new here. My name is , and I have had JRA since I was about 20 months old. My left knee was flexed and wouldn't straighten and it took many months and much hospitalization before they could diagnose me. I also had a synevectomy, which mostly straighted my leg. This was in the mid-seventies. I have been through many drug treatments, therapies, and phases in my life. I am an adult now, my JRA/RA is under pretty good control on medication at the moment. I have two children. My daughter (2) has seemingly unrelated special needs of her own, and my son (5) is in kindergarten. My biggest issues with the disease at present are fatigue (this is a biggie), and muscle weakness in my arms (I have limited range of motion in both elbows) which is most noticable when I have to lift my daughter who is not mobile herself and is getting bigger everyday. I'm here looking for other adults who have grown up with this disease, and also because I am on a similar group for parents of children with my daughter's health issue (hydrocephalus) and I found that an adult who grew up with this disability always seems to have an interesting perspective on our questions. I think it's nice to hear from someone who's been there, and I would like to be able to help anyone who has questions. I'm looking forward to getting to know you all. --------------------------------- Everyone is raving about the all-new beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 > hi all, > > I am new, my name is sharyn. My niece caitlyn has systemic arthritis she > has just turned 5, she has had it since she was about 3. > > she started off on asprin, then enbrel, methotrexate, now anakinra, she > is still very sore in the morning, very stiff and she has trouble > walking untill about 10am. > > When she gets her needle she screams in fear and pain, how can we limit > the pain of the anakinra. > > oh and her doctor has started paper work to get her actemra. hoping that > works. > > she starts school this years so thats another hurdle. > > how did christmas go, I had a wonderfull time, and the sun is shining, > which is wonderfull, you all keep warm > > sharyn > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 You are very welcome Sharyn, Luckily Jordan never has had the stiff joints or any arthritis symptoms, she had the rash for 7 months and high fever for 3 months weight loss and extreme fatigue along with swollen lymph nodes and spleen along with anemia and blood work that was all over the place.Now everything is back to normal, we go back to Boston on the 26th and they may change her dosage to every other day, we will see how that works.As far as the sting from the anakinra, that was pretty bad for about 2 weeks and then it eased, now Jordan said its just a little burn when it first goes in but not bad,if you can get numbing cream it is wonderful and an ice pack for right after.Im also surprised your niece likes it in the arm, Jordan said that was the worst, we now just switch which butt cheek we use every night. a and Jordan ( 9, systemic) sharyn <lou_shar@...> wrote: thanks paula, Its good to get advice from someone who is old enough to say what the injecton feels like. caitlyn goes and gets the needles out of the bag it is kept in, then she wipes her arm with the alcohol rub, chooses where she wants it, and its always her arm, we have tried talking her into somewhere else, but she get a little stressed. she also likes a warm washer after the needle, I think a cold one would be better, she thinks warm better.she cry just before the needle going in, poor thing. has jordan said the anakinra hurts at all, from what I have read about anakinra it does hurt, (stings). does jordan still get sore joints and stiff of a morning. catch up soon sharyn __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2007 Report Share Posted January 27, 2007 Urso is the drug to begin with, If other problems appear down the road, others will be added. A diet with 60 to 70 percent carbohydrates--primarily complex carbohydrates,such as pasta & whole grain breads. 20-30 percent protein (only lean meats & /or vegetable protein. 10 to 20 percent polyunsaturated fat, 8-12 glasses of water/day. 1,000 -1,500 sodium per day. Avoid excessive amounts of vitamins & minerals, especially vit.A, vit.b3, and iron. No alcohol. Avoid processed food. Liberal amounts of organic fruits & vegetables. No more than 1 to 3 cups of coffee per day. Vitamin D & Calcium supplement. Vitamin C. When a liver has been weakened or damaged, it has trouble juggling the varius nutrients. Nutrition is one area where a person has some degree of control & can actively participate in speeding recovery & minmizing the likelihood of additional injury. fiebers2003 <pfieber@...> wrote: Hi I am a new member and I would like to get some information and help in regards to PBC. My sister has been diagnosed over the last year and has lots of fatique and has a difficult time digesting foods. Are there any natural products besides drugs that are beneficial for PBC? Are there herbs that would be helpful? What kind of supplements and what diet should she be on? We really want to use natural products if possible. She is only on the Urso medication at this time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2007 Report Share Posted February 7, 2007 Azalyne, two reasons the SCD conspires against people in the treatment of dysbiosis: 1) the lack of fermentable fiber to FEED probiotics in the gut and, 2) the allowance of bananas, honey and whatever " specific carbs " shouldn't be allowed at all, at all, at all. 3) if there's a third reason, some SCD sites also don't allow undenatured whey. The shortcomings of the SCD brings us to why you're here on this particular heath group today. The outcome as you've seen is a GROWING intolerance to foods that are normally well-tolerated. Whazzup with that? Nothing, really, and many of these foods, even carbs, will be tolerated again once you successfully treat the dysbiosis. As you have noted, you can bridge the shortcomings of the SCD pretty well by at least incorporating inulin, undenatured whey and selenium, as many people in this group and several others have now done with excellent results. I think this bears repeating across the Internet; anyone is encouraged to use my online communications provided credit is given. Duncan Crow (a wholistic consultant in Canada) http://members.shaw.ca/duncancrow Inulin dosage varies and there is no upper limit; for a 3 year old, probably 1 tsp fopur times daily is enough; for an adult, about double that. This still falls well below about half of what can start to produce a laxative effect, which many researchers peg at around 33 grams - 40 grams daily. A slightly laxative effect is due to the inability of the probiotics to eat all the fiber in the time frame. I like your signature; actually I'm living by it. Duncan > a GF/CF diet, but due to severe gut dysbiosis/increasing food > intolerances we have been on the SCD. We have also been doing > anti-fungal/anti-parasite/anti- viral/anti-bacterial protocols, > digestive/systemic/proteolytic enzyme therapy, and probiotics for a > year now. We have seen tremendous healing, but still have a ways to > go. Yeast is the one area I am most frustrated with. I had all three > children taking Candex, a digestive enzyme that breaks down yeast, > but the minute I stopped it, the yeast came back in full force...I am > at a point that I don't want to hold the yeast at bay, but actually > treat its roots and make it go away for good. I hope I am not being > to idealistic! What would you suggest a good place to start might be? > I have read the mention of Inulin and Whey on this forum. What brands > do you recommend and what doses would you suggest for such small > children? Thanks in advance for any & all your suggestions. Cheers, > Azalyne (Elyas, Tryndl, & n) > -- > The quickest way to change the world is to be of service to others. > Show that your love can make a difference in the lives of people and > thereby someone else's love can make a difference in your life. By > each of us doing that and working together we change the world one > inner person at a time. > > -- Dannion Brinkley > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2007 Report Share Posted February 7, 2007 Duncan, I am also a new member with long time sufferer of candida. According to the stool test from Great Smokies Diagnostic Lab, I have sufficient amount of Bifidobacteria, but my Lactobacillus is abnormally low. My natural path doctor had me take Probiotic for a month and then came back for retest. Retest indicated no growth on Lactobacillus ( Again Bifidobacteria stay sufficient). I followed the same protocol a month after and the result was the same. I think you had mentioned that Inulin is primarily used to promote Bifidobacteria, but does it also promote the growth of Lactobacillus. Appreciate any input you can give. I just purchased denatured whey powder and Inulin from Now and will use these products, among other things, to hopefully correct dsybiosis issue. PS The stool also indicated that I had pathogenic level of Baccilus. Of course I do suffer from multiple digestive issues. --- Duncan Crow <duncancrow@...> wrote: > Azalyne, two reasons the SCD conspires against > people in the > treatment of dysbiosis: > > 1) the lack of fermentable fiber to FEED probiotics > in the gut and, > > 2) the allowance of bananas, honey and whatever > " specific carbs " > shouldn't be allowed at all, at all, at all. > > 3) if there's a third reason, some SCD sites also > don't allow > undenatured whey. > > The shortcomings of the SCD brings us to why you're > here on this > particular heath group today. The outcome as you've > seen is a GROWING > intolerance to foods that are normally > well-tolerated. Whazzup with > that? Nothing, really, and many of these foods, even > carbs, will be > tolerated again once you successfully treat the > dysbiosis. > > As you have noted, you can bridge the shortcomings > of the SCD pretty > well by at least incorporating inulin, undenatured > whey and selenium, > as many people in this group and several others have > now done with > excellent results. I think this bears repeating > across the Internet; > anyone is encouraged to use my online communications > provided credit > is given. > > Duncan Crow (a wholistic consultant in Canada) > http://members.shaw.ca/duncancrow > > Inulin dosage varies and there is no upper limit; > for a 3 year old, > probably 1 tsp fopur times daily is enough; for an > adult, about > double that. This still falls well below about half > of what can start > to produce a laxative effect, which many researchers > peg at around 33 > grams - 40 grams daily. A slightly laxative effect > is due to the > inability of the probiotics to eat all the fiber in > the time frame. > > I like your signature; actually I'm living by it. > > Duncan > > > a GF/CF diet, but due to severe gut > dysbiosis/increasing food > > intolerances we have been on the SCD. We have also > been doing > > anti-fungal/anti-parasite/anti- > viral/anti-bacterial protocols, > > digestive/systemic/proteolytic enzyme therapy, and > probiotics for a > > year now. We have seen tremendous healing, but > still have a ways to > > go. Yeast is the one area I am most frustrated > with. I had all > three > > children taking Candex, a digestive enzyme that > breaks down yeast, > > but the minute I stopped it, the yeast came back > in full force...I > am > > at a point that I don't want to hold the yeast at > bay, but actually > > treat its roots and make it go away for good. I > hope I am not being > > to idealistic! What would you suggest a good place > to start might > be? > > I have read the mention of Inulin and Whey on this > forum. What > brands > > do you recommend and what doses would you suggest > for such small > > children? Thanks in advance for any & all your > suggestions. Cheers, > > Azalyne (Elyas, Tryndl, & n) > > -- > > The quickest way to change the world is to be of > service to others. > > Show that your love can make a difference in the > lives of people > and > > thereby someone else's love can make a difference > in your life. By > > each of us doing that and working together we > change the world one > > inner person at a time. > > > > -- Dannion Brinkley > > > > > ________________________________________________________________________________\ ____ Don't pick lemons. See all the new 2007 cars at Autos. http://autos./new_cars.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2007 Report Share Posted February 9, 2007 Dinh, Bear in mind that lactobacilli aren't really required; research revealed that in children, practically the entire bowel population can be bifidobacteria. Anyway, using inulin will feed and normalize both types. I hope you meant you have UNdenatured whey which is, un-broken. Some bacillus is actually one of the dominant neutral bacteria. At this point it's not an issue due to the adequate bifidobacteria. Duncan > > Duncan, > I am also a new member with long time sufferer of > candida. According to the stool test from Great > Smokies Diagnostic Lab, I have sufficient amount of > Bifidobacteria, but my Lactobacillus is abnormally > low. My natural path doctor had me take Probiotic for > a month and then came back for retest. Retest > indicated no growth on Lactobacillus ( Again > Bifidobacteria stay sufficient). I followed the same > protocol a month after and the result was the same. I > think you had mentioned that Inulin is primarily used > to promote Bifidobacteria, but does it also promote > the growth of Lactobacillus. > Appreciate any input you can give. > > I just purchased denatured whey powder and Inulin from > Now and will use these products, among other things, > to hopefully correct dsybiosis issue. > > > > > > PS The stool also indicated that I had pathogenic > level of Baccilus. Of course I do suffer from multiple > digestive issues. > Quote Link to comment Share on other sites More sharing options...
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