Guest guest Posted August 31, 2003 Report Share Posted August 31, 2003 >>T4 (Synthroid or inactive thyroid hormone) suppresses TSH from the pituitary gland, which then suppresses T3 (active thyroid hormone). In a study, cell respiration was measured with T3. When T4 was added, it suppressed cell respiration, so T4 is anti-T3. Thus, T4 has a direct anti-thyroid effect. T4 also shrinks the thyroid gland and is cardiotoxic and causes bone loss. Converting to natural thyroid glandular will heal the thyroid and cause a goiter it to return to its normal size.<< So are you saying that Armour wouldn't cause these problems- suppressing the T3 and cell respiration plus being cardiotoxic and causing bone loss? Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2003 Report Share Posted August 31, 2003 What is Nutri-pak? Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 Sounds like it but it seems that some people don't do well on armor but do ok on synthroid...That was just an article I had read from a doctor I trust...seems I've read about the other components of Armour helping...T1 and T2? And I tend to believe that a whole source is always better than just that piece... like it's better to eat an orange than just take vit c cuz the orange comes with everything needed to help digest and process the vit c. www.litalee.com is where I've been mining my info from. Re: Newbie >>T4 (Synthroid or inactive thyroid hormone) suppresses TSH from the pituitary gland, which then suppresses T3 (active thyroid hormone). In a study, cell respiration was measured with T3. When T4 was added, it suppressed cell respiration, so T4 is anti-T3. Thus, T4 has a direct anti-thyroid effect. T4 also shrinks the thyroid gland and is cardiotoxic and causes bone loss. Converting to natural thyroid glandular will heal the thyroid and cause a goiter it to return to its normal size.<< So are you saying that Armour wouldn't cause these problems- suppressing the T3 and cell respiration plus being cardiotoxic and causing bone loss? Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 The flashing is normal when using up in the head area. I saw the same thing when I used my godzlilla for an abcessed tooth. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 Usually I use only a 9v battery with 15k ohm resistor, and I do not reverse the current, just change places with the electrodes. The optic nerve is very sensitive to current and the flash is registering the change. I don't know if it's harmful or not, probably not, but I'm not an expert or anything. I found it distracting, so I use a separate, non-reversing device above the neck, as described. IT it in our photos. I'm shown looking silly having the thing in my mouth and on top of my head under my ball cap. Well, good luck bG > The flashing is normal when using up in the head area. I saw the > same thing when I used my godzlilla for an abcessed tooth. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 Usually I use only a 9v battery with 15k ohm resistor, and I do not reverse the current, just change places with the electrodes. The optic nerve is very sensitive to current and the flash is registering the change. I don't know if it's harmful or not, probably not, but I'm not an expert or anything. I found it distracting, so I use a separate, non-reversing device above the neck, as described. IT it in our photos. I'm shown looking silly having the thing in my mouth and on top of my head under my ball cap. Well, good luck bG > The flashing is normal when using up in the head area. I saw the > same thing when I used my godzlilla for an abcessed tooth. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Debbie, After trying many things I finally changed my diet to mostly vegetarian. I read The PH Miracle and also bought the green drink and PH drops I found my body was very acidic (which apparently is a thriving environment for candida, parasites and an unhealthy balance) I noticed immediate improvement. I am also taking inulin and whey to correct the bowel balance. The only difference I notice now is if I dont drink the green drink which is many dried veggies and meant to assist alkalizing my body. It does as I check my urine and spit often. I went from it being 5 to between 7-7.4 depending on the day. So I guess it shifted from acid to more neutral. When I dont drink it and my acid level goes up I have some symptoms return. I also read "The Amazing Liver Flush" and did my first liver cleanse. I really recommend this book as well. I was amazed how many stones I passed and look forward to my next flush. I am sure you will find loads of advise here. love to you and yours, gigi artiste2323 <artiste2323@...> wrote: Hello to all,I am Debbie and I am new to the group and would like to share my experience and get advice.. I self diagnosed myself about three years ago with systemic candida. It has been frustrating for me to deal with this. As a child, I had many UTI's that I was put on antibiotics. As I got older into my teens,and adulthood, I still had UTI's and was treated with antibiotics. It got so bad that every week I would get one if I had sexual relations that the doctor put me on a low dose antibiotic to take every time I would engage in sex. All this without the knowledge to take probotics...I decided to do research to find out how I can rid myself of that.. I took cranberry tablets.. That has done the trick, but the damage was done. I have constant irritation and yeast infections, I have the anxiety, jitters, hyperactivity and concentration difficulties. About three years ago, I did my research and found grapefruit seed extract, and probotics, and garlic.. I took that and got myself off sugars for about three months. That worked to a point, but I totally didn't restrict the carbs as I should have. I did okay for awhile, but until recently. I had a PAP done and it came back positive again for candida. My doctor put me on Diflucan 200 mg one pill a week for three months. I am almost done with my second month. I honestly hate taking meds, but was desperate to do something to rid this of my body. After about three days after taking the Diflucan, I take a product called yeast fend, garlic tablets, I have a cup of P'Darco tea, and I take an probotic 2 to three times a day. I take the probotic every day. I have also been on a very strict diet. Very low carbs, I have a book that I have been following. I have lost weight, I have had no sugar except for occassional 3 strawberries. I don't feel as hyper, but when I take the Diflucan, I hate the die-off effect it gets me. Also when I take the other antifungals. I feel like this is going to plague me for the rest of my life. I have read from others of a liver flush. Would like advise on that. Anything else that someone can share to help me along. My husband and family are concerned and are very supportive. Thank you.. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 http://curezone.com/cleanse/liver/default.asp This is the link on curezone for the liver flush. I did it after reading the book. Someone at work said to me. Well I think it is stupid to do that if you might not even have liver or gallstones. My chiropractor (who was a RN so leans to western medicine in orientation) said that it is documented that 99% of autopsies find stones in the liver and gall bladder. I know I have a large on in the gallbladder though I have no pain. For that reason I felt more comfortable reading the book. Now in retrospect I would just follow the instructions and do it. I followed those in s Moritz "The Amazing Liver Flush" The info in this book was the best. Enjoy the healing process. IT is fun feeling better and better each day gigiSherry Bowlin <sjbowlin@...> wrote: Date: Mon, 12 Apr 2004 17:32:43 -0000 From: "artiste2323" <artiste2323@...>I feellike this is going to plague me for the rest of my life. I have readfrom others of a liver flush. Would like advise on that. Anythingelse that someone can share to help me along.Hi Debbie, Personally I found that I only truly began improving once I started theliver flushes. I'm beginning the apple juice regimen this morning for mythird flush.Sherry (from Oregon) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Hi, Margaret. I often use the electrodes in my mouth for tooth and sinus infections, and notice the flash. It does not seem to bother anything, and does not continue after zilling. Bob recommends either turning the unit down to a lower current, if possible, or just removing the electrodes and switching places. That might be a good solution if you don't mind the slobber behind your ear. I just ignore the flash, but can't recommend for anyone else. Have you noticed any improvement with your sinus problems? Dick Newbie > Hi everyone, my name is Margaret, I am from Australia, and I am new to > this group. > I recently acquired a Godzilla machine that " V " very kindly made and > sent to me. > I used it as someone mentioned in the group for sinus, (one electrode on > the upper gum, and one behind the ear). I was very slow and cautious > with the current, and I only got it to .15 and although I could not feel > anything, I could " see " a light flashing in my head with each pulse. Is > that normal? > Thank you in anticipation. > Best wishes to all, > MargaretB > > > > The information on this group is not intended as medical advice. Most group members are NOT doctors or health authorities. Please do not request medical advice, lest anyone get into trouble out of human compassion. There are huge fines and issues currently involved with unlicensed medical advice. The group is only here to share experiences according to the theme of the group, namely testing if electrical stimulus might inactivate microbes, as it seems to have done in the Einstein Medical College labs. We are interested in your results, but cannot say anything about repeatability, or whether this might have medical benefits. Thanks, for your understanding, good luck researching. --bG > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 --- Hi Debbie What are the pH drops for alkalising that you are using? Cheers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 --- Hi Debbie What are the pH drops for alkalising that you are using? Cheers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Hi Dick, Thank you, and others, for your replys. Yes, soon after I have been using the zapper I start sneezing, and a lot of mucous is released, and it feels a lot better. The pain in my ear is also improving. Just wondered if I was odd, seeing the flash. Very best wishes to all. Margaret. > >Have you noticed any improvement with your sinus problems? > >Dick > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 I am not using any pH drops..I drink organic unsweeten cranberry juice. I honestly do know know what my pH level is...natalie_lott <houndienj@...> wrote: --- Hi DebbieWhat are the pH drops for alkalising that you are using?Cheers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 Hi Jalyn: Welcome to the group. It is a shame that another child may have JRA, but you will find this a great place to be. You will get questions answered (believe me, I have asked a ton:), find support, understanding and compassion. My daughter, Caitlin (12 today), is still undiagnosed as your daughter. Caitlin became sick in early November with a fever of 105, sore throat, rash, exhaustion and arthritis. Started with the fever and sore throat and we all thought - strep. She was cultured twice and was negative. She also fell out of a pine tree the day before her symptoms began and banged up hr back pretty bad. Over the course of nine weekdays, we were in and out of the doctor's office trying to figure out what was going on with her. She was in agony! The day after Thanksgiving we went back in to the peds office and they suggested we take her to the hospital to see if they could figure out what was going on as surely there was something they were missing. She spent five days at the hospital and had labs done. The labs were not pinpointing what was going on. They finally had one lab, an ASO (shows recent strep infection) came back positive and the pediatrician thought they figured it out, she may have Rheumatic Fever. She said the concern was her heart as RF can destroy heart muscle, valves, etc. Instant panic set in with me (though I didn't show it). They scheduled an EKG and an echo and thank God, her heart was fine (had it checked since too and still fine:). The cardiologist didn't think Caitlin fit the symptoms of RF and, once again, we were told she shows symptoms of this, but not that. The most frustrating thing with rheumatoid disorders is that it is a process of ruling out before they can rule in. We saw a rheumy a few days after her release (she was released because what they were doing, reduction of fever (though that they couldn't control either), Motrin, rest, etc. she could do at home with much more comfort. You should have seen this child leaving at 10:00 at night. She wanted OUT! Me too! We were instructed to see a rheumy. Ha, easier said then done. I, literally, had to beg the rheumy's office for days for them to see her. Finally, after the ped spoke directly to him, he agreed to see her. A victory for us at that point. The rheumy ran more blood. Her labs were horrible. Sed rate was 120, she was anemic, etc. Everything that should have been down, was up and everything that should have been up, was down. He put her on Naproxen for the fever and joint pain, Prednisone for the anemia and inflammation and Cefzil to kill any remaining strep germ that was lurking. She was still not responding. Fevers were still at 105, sed rate up and hemoglobin lowering. He said we need to pursue testing for Leukemia. The day before Christmas we were at Children's National Medical Center in D.C. with her having a bone marrow biopsy done. A horrible experience. Thankfully, she tested negative! With her hemoglobin levels she was close to needing a transfusion. So we upped her Prednisone. It worked:) Her levels started rising, no blood transfusion for her. Her arthritis was still there, causing pain and started to cause swelling in her fingers so we added Methotrexate and Plaquenil to her meds. Soon after she started them the swelling went away. The fevers were coming down, but that darn rash was still there. It drove her crazy with the itching. She missed three months of school and was place on homebound instruction. She went back to school in February for half days for two weeks. She did great. She was so thrilled to be back. Me, I was worried sick. All those germs in there. Her labs turned the corner and the sed rate came down (finally) and everything else settled down (only 2 asterisks). She began to taper off her Prednisone and got down to 2mg and started having episodes of crying everyday uncontrollably, not like my child. Figuring it was the Prednisone we took her off of it (doctor's approval). She started losing her hair and having headaches and stomachaches so we took her off the MTX. Her hair stopped falling out, but still had headaches so next off was the Plaquenil. The rheumy figured if she was going to flare she would by April 15. I am happy to say she has not flared. She is now off all meds except the Cefzil, that's for the rheumy and ID doc to discuss. She may be one of lucky ones and have this horrible disease one time, but only time will tell. She is very aware of what happened and how very sick she was. She is starting to 'digest' it all. We are extremely thankful how well she is doing and pray everyday that it never shows it's ugly face again! Sorry this is so long, it just came flowing out. I hope you find some answers and relief for your daughter soon. Please keep us updated and ask any and all questions you have. What state are you in? Take care. Patty P.S. Caitlin couldn't stand the Naproxen either. The only way she could take it was small bites in big spoonfuls of pudding. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 Hi, Jalyn and welcome to the list. This place is a wealth of information and support. My son is older - 17 - and he has two forms of arthritis. He has pauciarticular (less than 4 joints at onset) jra and spondyloarthropy (affects tendons, spine, and other things). He does not have the fevers and rashes, which come with systemic. That does seem to be what your daughter has. Many of the kids here on this list have systemic, so I am sure one of those moms will be chiming in soon. Here you will learn more than you ever knew before about jra and its related diseases. The people here are very supportive. Georgina kind of runs things and she is always posting lots of good medical info. My son started on the NSAID Celebrex; Naproxen is one of these also. When he did not get very good results from that alone, a DMARD (disease modifying anti rheumatic drug) was added. He was on sulfasalazine, but that did not help him, so he was put on Methotrexate. It has been working well for him. Just to let you know that there are many different ways to treat this disease and what works for one may not work for another. A lot of it is trial and error. Come here to vent and find a shoulder to lean on whenever you need to. It took us personally 7 months to get a diagnosis and over a year before a good working combo of drugs was found. Some people get answers quicker some even longer. If you have any questions that you can't find answers to, just ask away. I am sure someone here will know or can help. Good luck, Michele (17,pauci & spondy) Newbie I am introducing myself to the group today as a mom of a 5 year old daughter who is as of yet undiagnosed but all signs are pointing to her suffering with systemic JRA. I have been busy trying today to find out what this means exactly and how my daughter will be affected in the long term with this. Some history, my daughter is the second oldest of my four children, who all came down with the flu in December of last year. It was fairly mild in all the children except for Nicki who complained chronicly of muscle pains and had difficulty walking. Her fever would rage both morning and night at around the 103 mark and was controlable with Motrin. She would be whiny and miserable and scream if your fingers even brushed her but with Motrin she would be my little angel again. I took her to the Dr. who told me it was just symptoms of the flu and I had read information on line to back that up. Come January and the fevers aren't going away and school resumes after the holidays. The Dr. Finally thinks that it might be something other than just the flu. Her joints never swelled up and I never saw any red patches either. Nicki missed a lot of school during january and early february and was in and out of school. In early march she went into the hospital overnight and they did a spinal tap on her and other barrage of tests to rule out the biggie things like lyme disease and such. Her fevers disappeared the next day but the pain in the joints continued. I could give her motrin in the mornings and send her off to school and then by 4pm she would be ready for another dose when she came home. She also got her first appointment to a clinic down at children's hospital which told me nothing! Until two weeks ago, we were mananging fairly well with the pain but her tummy was hurting a lot too which I was concerned was a side effect of too much motrin. She went for a bone scan at children's then and that morning was the first time that I had ever seen her ankle swell up and noticed for the first time several small light rashes on her. I was told to come back the following week for a follow up visit which would have been last Tuesday. My husband was getting very frustrated as well that nothing was moving fast enough and he called her doctor on the prior Thursday Morning before this appointment and told him that the child has had a stiff neck for several days and just can't do anything. So he said to take her down to children's (mind you over an hours drive away) and have her admitted through the emergency room there. More blood tests in the emergency room but finally we were getting some answers. The Dr.s there told me they suspect it is JRA and as she was in so much pain they gave her and please forgive me for not knowing the spelling for sure but Toradil (?????) by IV injection for the pain. They admitted her finally to a room upstairs and put her on Naproxen and Prevacid. She was in there for three nights. We have a follow up visit now at the hospital on June 2nd and are trying to set up something with a rheumatology specialist sometime in July. I'm just at my wits end with all this and still barely know the basics of this disease. I hope to find support and friendship with other parents that are going through the same thing. By the way, the naproxen doesn't seem to really hellp with the pain at all and makes her want to throw up each time she takes coz it tastes so bad . This is Jalyn G. and I look forward to getting to know you all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 Dear Jalyn, Welcome. Too bad we could not meet under better circumstances. You have come to the right place. There are more than a few parents here whose children have systemic jra. My daughter was 10 when she was diagnosed, and she is now 15. I won't bore you with the long story of her diagnosis, but it was very similiar to yours. It can be a difficult one to diagnose, and they usually do it by ruling other diseases out. It can be up to a year after the fevers leave that the arthritis begins. The rash can come and go. n's usually comes in late afternoon or evening, or when she gets overheated. You will probably find that the motrin doesn't touch the pain. n takes naprosyn, but I can't honestly say if it helps or not. July is a long time to wait to see a ped. rheumy, call and see if you can get on a wait list or something. Your other doctors might not want to change the meds until you see the rheumy, and your child may have to suffer quite a bit before that time. Many times a child will be put on steroids to break the pattern of the fevers and the systemic part. Now a days they really jump on top of the disease and will start a disease modifing drug to stop the destruction. That can be plaquenil , methotrexate, sulfasalazine, etc. Your daughter will be okay. The doctors will have to get this initial flare under control. From there you try to manage the disease. She may flare again or have mini-flares, but one never knows the time frames. n just flared this winter and it was pretty bad. She is coming out of it now, and is about at 98% of her old self. When she gets sick with a cold or flu, it tweaks the arthritis a bit. Then it calms down again. n also needs more rest than other teenagers. Take one day at a time, and come here for support. We all know what you are going through. Start a diary with your daughter's symtoms and keep it forever. Ours is dog -eared on all four corners, but we still bring it to every appt. We write down everything. We also ask for a copy of all labs, etc. We have brought n to two other doctors for additional opinions, and it is good to just hand them a copy of all of her records. Remember--- you are your child's strongest advocate and you know her the best. Stand up for her and go with your gut. (n, 15, systemic) Newbie I am introducing myself to the group today as a mom of a 5 year old daughter who is as of yet undiagnosed but all signs are pointing to her suffering with systemic JRA. I have been busy trying today to find out what this means exactly and how my daughter will be affected in the long term with this. Some history, my daughter is the second oldest of my four children, who all came down with the flu in December of last year. It was fairly mild in all the children except for Nicki who complained chronicly of muscle pains and had difficulty walking. Her fever would rage both morning and night at around the 103 mark and was controlable with Motrin. She would be whiny and miserable and scream if your fingers even brushed her but with Motrin she would be my little angel again. I took her to the Dr. who told me it was just symptoms of the flu and I had read information on line to back that up. Come January and the fevers aren't going away and school resumes after the holidays. The Dr. Finally thinks that it might be something other than just the flu. Her joints never swelled up and I never saw any red patches either. Nicki missed a lot of school during january and early february and was in and out of school. In early march she went into the hospital overnight and they did a spinal tap on her and other barrage of tests to rule out the biggie things like lyme disease and such. Her fevers disappeared the next day but the pain in the joints continued. I could give her motrin in the mornings and send her off to school and then by 4pm she would be ready for another dose when she came home. She also got her first appointment to a clinic down at children's hospital which told me nothing! Until two weeks ago, we were mananging fairly well with the pain but her tummy was hurting a lot too which I was concerned was a side effect of too much motrin. She went for a bone scan at children's then and that morning was the first time that I had ever seen her ankle swell up and noticed for the first time several small light rashes on her. I was told to come back the following week for a follow up visit which would have been last Tuesday. My husband was getting very frustrated as well that nothing was moving fast enough and he called her doctor on the prior Thursday Morning before this appointment and told him that the child has had a stiff neck for several days and just can't do anything. So he said to take her down to children's (mind you over an hours drive away) and have her admitted through the emergency room there. More blood tests in the emergency room but finally we were getting some answers. The Dr.s there told me they suspect it is JRA and as she was in so much pain they gave her and please forgive me for not knowing the spelling for sure but Toradil (?????) by IV injection for the pain. They admitted her finally to a room upstairs and put her on Naproxen and Prevacid. She was in there for three nights. We have a follow up visit now at the hospital on June 2nd and are trying to set up something with a rheumatology specialist sometime in July. I'm just at my wits end with all this and still barely know the basics of this disease. I hope to find support and friendship with other parents that are going through the same thing. By the way, the naproxen doesn't seem to really hellp with the pain at all and makes her want to throw up each time she takes coz it tastes so bad . This is Jalyn G. and I look forward to getting to know you all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 Welcome to the list Jalyn. Nicki and your family sure has been through a lot to get to where you are! I feel terrible for all the pain that your little one is suffering. This is a great board. You will find much relief and many answers here. It does sound like Nicki is displaying many systemic symptoms. There are quite a few of systemic kids on this board and I am sure they can answer many of your questions. Medications are tricky. Keep in mind most NSAID (i.e. Motrin, Naproxen) take 6 to 8 WEEKS to start working. There are very few " quick fix " drugs so it is agonizing to watch our little one's suffering until the medications start working. My daughter is on Prednisone which is often a faster working drug, but it has many side effects. She is also on Methotrexate and Zantac to help with the stomach problems. Your frustration is totally warranted so don't feel like you are all alone. Keep fighting for Nicki, because only you know what she is going through each and every day! Good luck and ask away! Alia and Caroline, age 2, poly and uveitis Newbie I am introducing myself to the group today as a mom of a 5 year old daughter who is as of yet undiagnosed but all signs are pointing to her suffering with systemic JRA. I have been busy trying today to find out what this means exactly and how my daughter will be affected in the long term with this. Some history, my daughter is the second oldest of my four children, who all came down with the flu in December of last year. It was fairly mild in all the children except for Nicki who complained chronicly of muscle pains and had difficulty walking. Her fever would rage both morning and night at around the 103 mark and was controlable with Motrin. She would be whiny and miserable and scream if your fingers even brushed her but with Motrin she would be my little angel again. I took her to the Dr. who told me it was just symptoms of the flu and I had read information on line to back that up. Come January and the fevers aren't going away and school resumes after the holidays. The Dr. Finally thinks that it might be something other than just the flu. Her joints never swelled up and I never saw any red patches either. Nicki missed a lot of school during january and early february and was in and out of school. In early march she went into the hospital overnight and they did a spinal tap on her and other barrage of tests to rule out the biggie things like lyme disease and such. Her fevers disappeared the next day but the pain in the joints continued. I could give her motrin in the mornings and send her off to school and then by 4pm she would be ready for another dose when she came home. She also got her first appointment to a clinic down at children's hospital which told me nothing! Until two weeks ago, we were mananging fairly well with the pain but her tummy was hurting a lot too which I was concerned was a side effect of too much motrin. She went for a bone scan at children's then and that morning was the first time that I had ever seen her ankle swell up and noticed for the first time several small light rashes on her. I was told to come back the following week for a follow up visit which would have been last Tuesday. My husband was getting very frustrated as well that nothing was moving fast enough and he called her doctor on the prior Thursday Morning before this appointment and told him that the child has had a stiff neck for several days and just can't do anything. So he said to take her down to children's (mind you over an hours drive away) and have her admitted through the emergency room there. More blood tests in the emergency room but finally we were getting some answers. The Dr.s there told me they suspect it is JRA and as she was in so much pain they gave her and please forgive me for not knowing the spelling for sure but Toradil (?????) by IV injection for the pain. They admitted her finally to a room upstairs and put her on Naproxen and Prevacid. She was in there for three nights. We have a follow up visit now at the hospital on June 2nd and are trying to set up something with a rheumatology specialist sometime in July. I'm just at my wits end with all this and still barely know the basics of this disease. I hope to find support and friendship with other parents that are going through the same thing. By the way, the naproxen doesn't seem to really hellp with the pain at all and makes her want to throw up each time she takes coz it tastes so bad . This is Jalyn G. and I look forward to getting to know you all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 Just wanted to thank you for welcoming me to the group!! > > > > My daughter, Caitlin (12 today), is still undiagnosed as your daughter. > Just wanted to say Happy birthday to your daughter!!! > .....hemoglobin lowering. He said we need to pursue testing for > Leukemia. The day > before Christmas we were at Children's National Medical Center in D.C. > with her Yes, she was at Children's as well in D.C. They were very nice there to us. Are you in the area? I'm up in land about an hour from the hospital. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 Jalyn, My heart goes out to you and your family for what you're going through. It's just so awful... the not knowing. The prognosis for most JRA kids is actually quite good in the long term these days. Medicine has come a looong way, especially with the new biologic drugs on the market in the last five years. I have a similar story to yours and many other of the systemic kids, in particular. However, we went 3 1/2 years of not knowing and theh process of elimination before we got the ROYAL joint pain and a firm diagnosis of systemic onset JRA (some call it Still's disease). His symptoms for those 3 1/2 years were rashes, 105-106 degree fevers, enlarged liver and spleen, tummy/digestive problems and great fatigue. We could never get a concrete diagnosis of JRA because he hadn't yet had the lasting joint pain. We were even being seen by rheumatologists every 3 months during all that time and getting bloodwork taken at every appt. For brevity, I won't get into all the details, but as you know, the diagnosis is actually a " process of elimination game " . Did I really just say game?? My son is now 8 and doing pretty darn well with some hiccups along the way. His ROYAL joint pain came last August. Currently, he's on 1 ml methotrexate injections, and down to 3mg prednisone daily (from a high of 35mg). Hopefully, he'll be completely off pred. in another 4-5 weeks. We've had some very dark months and I will never forget them, but prefer not to dwell on them. Keep the faith and we will help you in every way. A sad welcome to you. Stacia and Hunter, 8,systemic,iritis PS - you should start seeing a pediatric ophthalmologist to check for any eye inflammation that can occur independent of other systemic symptoms. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2004 Report Share Posted May 15, 2004 Hi Jalyn and Nicki We're relatively new at this too, having a just-turned two year old who was diganosed at 13 months, with Pauciarticular JRA. (It's also known as Oligoarthritis here in Australia.) After an initial flare in his left ankle, which involved some pretty scary swelling, a mild rash, but no temperatures- Bayly's diagnosis has now been upgraded to Extended Oligoarthritis- with 6 joints being affected in the first 6 months. It's amazing how hard it is to pinpoint this rotten disease- Bayly had to undertake blood tests, bone scans, needle aspirates, MRIs and X-rays- plus an initial misdiagnosis and start of antibiotic treatment for some unknown virus, before doctors basically ruled out everything else (bone infection, and " the 'coccals " - Strep, Staph and Meningo) in order to come to their conclusion. They even severely scrutinised Grant in case he or my step-son had abused Bayly!!! I had literally just found out I was pregnant again the day before, and so couldn't be there for some of the tests, as a risk to the new baby (Violet, who's sitting on my lap now) and that was every bit as traumatic as what was going on with my baby boy (not to mention those raging hormones making me even more emotional about it all.) After weeks of intensive in-hospital testing, including Bayly going under General Anaesthetic twice, and more outpatient visits to different Specialists, they 'thought it was maybe Juvenile Arthitis of some sort', but Bayly had a negative Rheumatoid factor, though positive ANA factor. And they still weren't sure. They are now. Since he's been diagnosed and on treatment, which includes Naprosyn and Prednisone daily, Methotrexate weekly- I've met a little 2 and a half year old girl locally (the people you meet at Hydrotherapy!) who was diagnosed with Pauci and treated in mere days! At least some doctors are being more aware of the illness in kids. I sincerely hope it's not JRA for Nicki, but if it is, luckily you've come to a great place for information and support, in the early stages- you and Nicki will do well to be on this list. We've been here just a short time, and already benefitted hugely. Hugs to all who've helped us thus far - Jo (Bayly, 2, extended oligo) > I am introducing myself to the group today as a mom of a 5 year old > daughter who is as of yet undiagnosed but all signs are pointing to her > suffering with systemic JRA. I have been busy trying today to find out > what this means exactly and how my daughter will be affected in the long > term with this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2004 Report Share Posted May 15, 2004 > I am introducing myself to the group today as a mom of a 5 year old > daughter who is as of yet undiagnosed but all signs are pointing to her > suffering with systemic JRA. I have been busy trying today to find out > what this means exactly and how my daughter will be affected in the long > term with this. > > Some history, my daughter is the second oldest of my four children, who > all came down with the flu in December of last year. It was fairly mild > in all the children except for Nicki who complained chronicly of muscle > pains and had difficulty walking. Her fever would rage both morning and > night at around the 103 mark and was controlable with Motrin. She would > be whiny and miserable and scream if your fingers even brushed her but > with Motrin she would be my little angel again. I took her to the Dr. > who told me it was just symptoms of the flu and I had read information > on line to back that up. > > Come January and the fevers aren't going away and school resumes after > the holidays. The Dr. Finally thinks that it might be something other > than just the flu. Her joints never swelled up and I never saw any red > patches either. Nicki missed a lot of school during january and early > february and was in and out of school. In early march she went into the > hospital overnight and they did a spinal tap on her and other barrage of > tests to rule out the biggie things like lyme disease and such. Her > fevers disappeared the next day but the pain in the joints continued. I > could give her motrin in the mornings and send her off to school and > then by 4pm she would be ready for another dose when she came home. She > also got her first appointment to a clinic down at children's hospital > which told me nothing! Until two weeks ago, we were mananging fairly > well with the pain but her tummy was hurting a lot too which I was > concerned was a side effect of too much motrin. > > She went for a bone scan at children's then and that morning was the > first time that I had ever seen her ankle swell up and noticed for the > first time several small light rashes on her. I was told to come back > the following week for a follow up visit which would have been last > Tuesday. My husband was getting very frustrated as well that nothing > was moving fast enough and he called her doctor on the prior Thursday > Morning before this appointment and told him that the child has had a > stiff neck for several days and just can't do anything. So he said to > take her down to children's (mind you over an hours drive away) and have > her admitted through the emergency room there. More blood tests in the > emergency room but finally we were getting some answers. The Dr.s there > told me they suspect it is JRA and as she was in so much pain they gave > her and please forgive me for not knowing the spelling for sure but > Toradil (?????) by IV injection for the pain. > > They admitted her finally to a room upstairs and put her on Naproxen and > Prevacid. She was in there for three nights. We have a follow up > visit now at the hospital on June 2nd and are trying to set up something > with a rheumatology specialist sometime in July. I'm just at my wits > end with all this and still barely know the basics of this disease. I > hope to find support and friendship with other parents that are going > through the same thing. By the way, the naproxen doesn't seem to really > hellp with the pain at all and makes her want to throw up each time she > takes coz it tastes so bad . > > This is Jalyn G. and I look forward to getting to know you all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Hey I have a story semi similar to yours. I have Polyarticular JRA dx at 6 and 14 and then at 17 was dxd with spondyloarthropathy or AS. I'm on celebrex and Enbrel.. can't take methotrexate because it made me really sick. The Enbrel has been semi helpful for the JRA but not at all helpful for the spondy. My JRA has never fully been in control and my spondy seems to just get worse with age. I dont know about the passing onto kids thing cause as of right now I don't have any.. Best of luck,. (poly JRA and Spondy, 19) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Hi! I wouldn't let the fact that there is a genetic predisposition to artritis keep you from having children. But yes there is that chance. I have arthritis since age 11 although it's never really been treated. I take aleve most days and it does enough. My dd is 3.5 and was diagnosed at 18 mo. It's hard her having arthritis and it's hard know that she probably inherited from me. But it's a very small part of our lives comparably and I have no regrets. The chances are your children will not have arthritis but there are no guarantees. Good luck to you! > Hi! I am new to the group and would just like to tell you guys a little > bit about myself. I am 23 and have been diagnosed with JRA since I was > 16. I have recently been diagnosed with ankylosing spondolyitis. > (arthritis in the spine) I take Enbrel Vioxx, multi-vitamin, folic acid, > Darvocet or Prednisone as needed and supposed to take MTX but I have > issues with not being able to get in the sun(yeah I know that's stupid). > My overall body is doing fantastic on Enbrel! I'd say it is a miracle > drug for my JRA, but it barely helps my spine. My back hurts constantly. > Do any of you know or have AS?? I had a rough time when I got diagnosed > b/c of my age. I went through the whole " why me " But now I realize > things could be a lot worse. I try to stay active as well as I can. I > have a full time job at CVS and a part-time job at The Limited. I still > hurt through out the day but if I'm at home then I just sit and that > makes me hurt even worse. And even if I don't feel like doing anything I > make my self do it. I mean I'm 23; I'm not going to let these diseases > keep me from living. I see that there are a lot of parents with kids in > this group. I can't imagine having these diseases so young. 16 is young > but I understood what was going on. I just pray that my kids do not get > this disease!!! Dose anyone know how much of a risk it is to pass it on > to your children? The only relative my mom can think of that had RA is > her Grandfather. She said he was always in a wheel chair and his hands > were deformed (that has not happened to me-thank god ) But since it was > so long ago the Dr's didn't know what it was. So she's not 100% that he > had RA..I just hope that my body allows me to have kids. I cant wait to > have them and I will be so devastated if I'm unable to!!! Anyway I look > forward to talking to people who know what I've been/going through. > Thanks for listening to my story! > > > Spirit > spirit@a... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Hi and welcome to the group. There are a few adults here who have AS and JRA. Some have kids, so hopefully they will be able to respond to your questions about that. My son has pauci jra and AS. The AS affects mostly his tendons in his feet, his lower back and his neck. On occasion, his hands. He has been diagnosed with jra since 13 and AS was added a few months later. My son takes MTX and has no problems with the sun at all. It has been a great drug for him, giving him his range of motion back. Its great you are able to do so much and hopefully you will find something to help with your back. Again, welcome! Michele (17, pauci & spondy) Newbie Hi! I am new to the group and would just like to tell you guys a little bit about myself. I am 23 and have been diagnosed with JRA since I was 16. I have recently been diagnosed with ankylosing spondolyitis. (arthritis in the spine) I take Enbrel Vioxx, multi-vitamin, folic acid, Darvocet or Prednisone as needed and supposed to take MTX but I have issues with not being able to get in the sun(yeah I know that's stupid). My overall body is doing fantastic on Enbrel! I'd say it is a miracle drug for my JRA, but it barely helps my spine. My back hurts constantly. Do any of you know or have AS?? I had a rough time when I got diagnosed b/c of my age. I went through the whole " why me " But now I realize things could be a lot worse. I try to stay active as well as I can. I have a full time job at CVS and a part-time job at The Limited. I still hurt through out the day but if I'm at home then I just sit and that makes me hurt even worse. And even if I don't feel like doing anything I make my self do it. I mean I'm 23; I'm not going to let these diseases keep me from living. I see that there are a lot of parents with kids in this group. I can't imagine having these diseases so young. 16 is young but I understood what was going on. I just pray that my kids do not get this disease!!! Dose anyone know how much of a risk it is to pass it on to your children? The only relative my mom can think of that had RA is her Grandfather. She said he was always in a wheel chair and his hands were deformed (that has not happened to me-thank god ) But since it was so long ago the Dr's didn't know what it was. So she's not 100% that he had RA..I just hope that my body allows me to have kids. I cant wait to have them and I will be so devastated if I'm unable to!!! Anyway I look forward to talking to people who know what I've been/going through. Thanks for listening to my story! Spirit spirit@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Hi Spirit and welcome My name is Donna and I am a JRA vet. Now 38 but was diagnosed somewhere around age 5. You have come to a great spot full of caring and wonderful folks. Whether kids, parents, teens or adults it is a great hangout. I am founder and leader for a support system for kids, families and adults with a juvenile diagnosis. Please feel free to check out our page at faces Drop me a line anytime and if you wish to be on the FACEs mailing list let me know.Once again, welcome Donna Quote Link to comment Share on other sites More sharing options...
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