Guest guest Posted July 4, 1990 Report Share Posted July 4, 1990 I do a very low carb, non dairy, paleo diet, and my son's seizures are gone For paleo diet see: www.paleodiet.com www.neanderthin.com hope that helps > >Hi everyone, > >My name is Lori and I'm the mom to 12 yr old Jordan. He was recently >diagnosed with simple partial. There is no apparent reasoning for the >sudden change in his life, aside from puberty. > >His seizures manifest in his left arm..a slight twitch throughout the day >that sometimes grows into the whole left side. Those sorts of seizures >start with an aura of sorts, include him completely aware but unable to >talk. His breathing is also changed, these last for about a minute. So >besides the sporadic twitching, he also has larger seizures. Including a >grand mal at school...before diagnosis or medication. > >He's on carbatrol, 300 mg twice a day. I'm just wondering if there are any >supplements he can take to make himself feel better, reduce the seizure >activity etc? With the slight tremors throughout the day he has 'feelings' >like warmth in the right side of his head etc. This causes a great deal of >anxiety for him as he never knows when it's going to expand into something >greater. > >Thanks for any ideas >Lori > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 1998 Report Share Posted September 30, 1998 Hi , Really great talking , or I should say, writing with you yesterday. This will be a quick note, I just arrived in Orlando and am staying at a girlfriends home who is also experiencing thyroid problems. She has just been diagnosed with hashimotos hypothyroidism. I told her about the group, and she would be very interested in joining. If you could please email her and send her your story, I would greatly appreciate it. Her name is Kathy and email address is FAMJENN@... Thanks so much . I promise when I get the opportunity I will again write and update the group. Viv ______________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 1999 Report Share Posted June 10, 1999 Skip..you can get your answers on the AOL Better Health message board on Hypothyroidism. There are hundreds of people who used to be on that board discussing such issues. I haven't checked it lately, but give it a try. Keyword: Better Health (Endocrine/Hormone Disorders) Good luck. ------------------------------------------------------------------------ eGroups.com home: hyperthyroidism - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 1999 Report Share Posted June 10, 1999 In a message dated 6/9/99 11:40:31 PM Central Daylight Time, LovingSkip@... writes: << iron supplements >> Hi Virginia, You should take your iron supplement at the other end of the day from the Synthroid. There was a Doctor on Oprah about 2 years ago who said this is VERY important and most doctors and pharmacists do not know this. Taking them together the iron depletes the synthroid and ur lab tests w/show need more Synthroid (or thyroid replacement). Judy ------------------------------------------------------------------------ eGroups.com home: hyperthyroidism - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 1999 Report Share Posted June 10, 1999 Hi Afsi, My name is MarÃa and my son Diego of 5y took MTX last month but apparently he wasn't lucky and the drug caused him a hemorrhage digestive and he's at hospital for 3 weeks. This is our experience with MTX. Now he is taking Prednisone (20mg diary) Ah! welcome to the group... Regards, -------------- [ ] New member From: " Afsi Goodarzpoor " <afsi_goodarzpoor@...> Hi: I just joined this list yesterday. My name is Afsi and I have a daughter (just turned 3 last week) who was diagnosed with pauci articular JRA in jan 98 (after 5 months of running around in a circle and nobody knew what was wrong with my poor little baby!!!). After getting the same diagnosis from 3 docs, she was put on prednisone and Naprosyn and in Apr of 98, she was put on Methotrexate. Since she was having so many stomach problems (internal bleeding, ulcers, eosinophilic gastroenteritis), all caused by Naprosyn, despite one of her rhumotologist's opinion, we took her off of naprosyn by the end of Oct 98. Eversince then (knock on wood) she has been doing great. Now, she is only on methotrexate and she has no sympotoms of pain or swelling. However, her left index finger is still swollen but she uses it all the time and she has no pain or any lost range of motion. Since Oct 98, we have been seeing 2 Rhuematologists. One wanted to take her off of Methtrexate in April 99 and the other one does not (she is the same doc who didn't want to take her off of Naprosyn). Has anyone's child on this list ever been on Methotrexate? When does one come off of it. I am thinking a bout seeking a 3rd opinion. If you know any info please share your thoughts & info with me. Thanks a million.... ------------------------------------------------------------------------ Give back to your community through " Grow to Give. " Deadline is June 19. See homepage for details. ------------------------------------------------------------------------ Visit my homepage for a list of sites with info on childhood arthritis: http://www.geocities.com/Heartland/Village/8414/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 1999 Report Share Posted June 11, 1999 Hi Afsi, My son has been on weekly MTX injections for over a year, and we have now got him off oral prednisolone - no idea about getting him off MTX at this stage, but we have not noticed any ill-effects from it...and it seems to work! Regards, Oliver > [ ] New member > > From: " Afsi Goodarzpoor " <afsi_goodarzpoor@...> > > > > Hi: > > I just joined this list yesterday. My name is Afsi and I have a daughter > (just > turned 3 last week) who was diagnosed with pauci articular JRA in jan 98 > (after > 5 months of running around in a circle and nobody knew what was wrong with > my > poor little baby!!!). After getting the same diagnosis from 3 docs, she > was put > on prednisone and Naprosyn and in Apr of 98, she was put on Methotrexate. > Since > she was having so many stomach problems (internal bleeding, ulcers, > eosinophilic > gastroenteritis), all caused by Naprosyn, despite one of her > rhumotologist's > opinion, we took her off of naprosyn by the end of Oct 98. Eversince then > (knock on wood) she has been doing great. Now, she is only on > methotrexate and > she has no sympotoms of pain or swelling. However, her left index finger > is > still swollen but she uses it all the time and she has no pain or any lost > range > of motion. Since Oct 98, we have been seeing 2 Rhuematologists. One > wanted to > take her off of Methtrexate in April 99 and the other one does not (she is > the > same doc who didn't want to take her off of Naprosyn). Has anyone's child > on > this list ever been on Methotrexate? When does one come off of it. I am > thinking a bout seeking a 3rd opinion. If you know any info please share > your > thoughts & info with me. Thanks a million.... > > > > ------------------------------------------------------------------------ > Give back to your community through " Grow to Give. " > > Deadline is June 19. See homepage for details. > ------------------------------------------------------------------------ > Visit my homepage for a list of sites with info on childhood arthritis: > http://www.geocities.com/Heartland/Village/8414/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 1999 Report Share Posted June 11, 1999 Hello Afsi, More and more often, doctors seem to be prescribing MTX earlier in the treatment plan. My son was started on it during his initial flare and has been taking it for four years. A lot of times there are far fewer side effects with MTX than there are with prednisone. It's similar in that it's an immunosuppressant that also has anti-inflammatory properties. MTX isn't the only DMARD he takes. Josh also takes hydroxychloroquine (plaquinel) everyday. And prednisone. And an NSAID. Naprocyn and Advil didn't work too well for him and neither did Relafen. He takes Indomethacin twice a day and to help prevent any associated gastrointestinal problems, he takes it with Cytotec. I remember how scared and worried I was when they first suggested MTX for my son, especially after taking a look at the list of possible side effects. It's proven itself to be pretty safe and effective, though. Especially when used in combination with folic acid. It's commonly prescribed for the treatment of rheumatic disorders in both children and adults. It's believed to actually modify the course of the disease and to be able to slow down the progression of joint destruction associated with JRA. A lot of the research points to good results in controlling the illness. If your daughter has been able to tolerate this medicine without unwanted side effects, I'd be inclined to want to continue the treatment. IMO, it's better to try to preserve your daughter's joint function right from the early stages, before much damage occurs. Take care, Georgina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 1999 Report Share Posted June 11, 1999 Hi : I am sorry to hear that Diego had a reaction to Methotrexate. How is he feeling now? Is he out of the hospital and what does he take now? Does he have Systemic JRA or the other kinds. I hope all goes well for you guies. Take good care.... " Siabala, " <MSiabala@...> on 06/10/99 02:41:02 PM Please respond to onelist " ' onelist' " < onelist> cc: (bcc: Afsi Goodarzpoor/C/Fairfax/Mobil-Notes) Subject: Re: [ ] New member Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 1999 Report Share Posted June 11, 1999 Hi Afsi and all those of the list: Dieguito should come out today of the hospital but he had a flare this dawn :-( The doctor said us that is for he is taking only Prednisone (20mg), no other antiinflamatory because his stomach is delicate still... He want to give him, Naproxen but I know (thanks to the list)that it has effects in the stomach... I hope he's stabilize this weekend... Regards, -------------- Re: [ ] New member Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 1999 Report Share Posted June 11, 1999 Hello Afsi, I have a soon to be 9 yr old daughter who's been on methotrexate for over a year. I was alarmed when I read everything on it but decided to try it. She is doing much better on mtx than on the prednisolone so I'm glad she takes it now. It doesn't cause her any problems either. She's on 15mg, takes it orrally. I draw it up out of the needle and put it in a little cup mixed with some water and she drinks it right down. Her inflammation seemed to have gone down alot since she's been on it, too. Good luck, hope this helps. Tracey Afsi Goodarzpoor wrote: > From: " Afsi Goodarzpoor " <afsi_goodarzpoor@...> > > Hi: > > I just joined this list yesterday. My name is Afsi and I have a daughter (just > turned 3 last week) who was diagnosed with pauci articular JRA in jan 98 (after > 5 months of running around in a circle and nobody knew what was wrong with my > poor little baby!!!). After getting the same diagnosis from 3 docs, she was put > on prednisone and Naprosyn and in Apr of 98, she was put on Methotrexate. Since > she was having so many stomach problems (internal bleeding, ulcers, eosinophilic > gastroenteritis), all caused by Naprosyn, despite one of her rhumotologist's > opinion, we took her off of naprosyn by the end of Oct 98. Eversince then > (knock on wood) she has been doing great. Now, she is only on methotrexate and > she has no sympotoms of pain or swelling. However, her left index finger is > still swollen but she uses it all the time and she has no pain or any lost range > of motion. Since Oct 98, we have been seeing 2 Rhuematologists. One wanted to > take her off of Methtrexate in April 99 and the other one does not (she is the > same doc who didn't want to take her off of Naprosyn). Has anyone's child on > this list ever been on Methotrexate? When does one come off of it. I am > thinking a bout seeking a 3rd opinion. If you know any info please share your > thoughts & info with me. Thanks a million.... > > ------------------------------------------------------------------------ > Give back to your community through " Grow to Give. " > > Deadline is June 19. See homepage for details. > ------------------------------------------------------------------------ > Visit my homepage for a list of sites with info on childhood arthritis: > http://www.geocities.com/Heartland/Village/8414/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 For those of you with kids on Methatraxate how long did it take for you to start to see a difference in symptoms? And did the symptoms disappear at the same time side effects if any appeared or was there a lag time with one of them? My daughter is probably going on to Methatrexate next and we are just waiting to see how long she goes on with only Indocin till she 'needs' something else, and that way they will tell how much and how often and by which method to give it to her. Has any one else tried that kind of thing. I.e. waiting on only an anti Inflammatory inorder to evaluate things? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 Hi( Skis@... , sorry I am not sure what your name is): My daughter has been on Methotrexate since Apr 1998. She started it in conjunction with prednisone & Naprosyn. It usaully takes a bout 6-8 weeks for Methotrexate to show any results. My daughter has been able to tolerate it pretty well. She has no swelling in her ankles and wrists and toes or anywhere else except that one of her index fingers is still swollen. She also stopped taking Prednisone in July of 1998 and Naprosyn in Oct. 1998 (due to having severe stomach problems). My daughter takes two pills of 2.5 mg per week. I finely crush the pills with a spoon and mix it with Gerber Baby food desserts (such as peras) or pear juice and give it to her. When she began her treatment we had to go for labs every other week. But now it is only once a month. They have to monitor SGPT and SGOT (liver enzymes) as well as CBC and platelette counts very closely since Methotrexate can cause liver problems and also can supress the production of whgite blood cells. Knock on wood we have not had any problems and she is very happy and active 3 year old. The confusing thing is that one of our rheumatologists wanted to take her off of Methotrexate and the other one wants to still leave her on it (because of that one finger). Anyways, I wish you all the luck with starting your daughter up on Methotrexate. I know I had lots of doubts in my mind in the beginning. But I am glad we made the right decision as to putting her on it. God bless you and good luck!!!! Skis@... on 06/14/99 04:06:26 PM Please respond to onelist onelist cc: (bcc: Afsi Goodarzpoor/C/Fairfax/Mobil-Notes) Subject: Re: [ ] New member From: Skis@... For those of you with kids on Methatraxate how long did it take for you to start to see a difference in symptoms? And did the symptoms disappear at the same time side effects if any appeared or was there a lag time with one of them? My daughter is probably going on to Methatrexate next and we are just waiting to see how long she goes on with only Indocin till she 'needs' something else, and that way they will tell how much and how often and by which method to give it to her. Has any one else tried that kind of thing. I.e. waiting on only an anti Inflammatory inorder to evaluate things? ------------------------------------------------------------------------ Last chance to earn $5000 for your charity of choice! Deadline for " GROW TO GIVE " is June 19. See homepage for details. ------------------------------------------------------------------------ Visit my homepage for a list of sites with info on childhood arthritis: http://www.geocities.com/Heartland/Village/8414/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 1999 Report Share Posted June 15, 1999 Thank you for your prompt response. My guess is that when they start her on the Methatraxate it will be similar to your daughter. I think they do the Prednisone as a temporary measure while hte Methrexate is getting going then they wean them off? Is that correct? Naprosyn is that weaker than Indomethasin? Why would they use one instead of another do you know? So your daughter does well it sounds on just two 2.5mg tabs of methatrexate a week? What is her SED rate these days and how often has she had a flare in the last year? What was the SED rate when she started the Methatrexate? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 1999 Report Share Posted June 15, 1999 Does any one here find that a good day of lots of activity, running around and playing at the park and beach can bring on a bad day? following. I'm trying to figure out if there is any kind of pattern or is there just no pattern with this awful disease? Also does any one here find that their child gets effected with irritability as in acting like a really spoilt child. Not due to Steroids but just seems to rear it's ugly head from time to time during the day. Tantrum type stuff or lack of social graces around other kids. Pouting and ignoring, etc.? May be worse at times when mobility is worse? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 1999 Report Share Posted June 15, 1999 Hi , Well, Josh first started methotrexate while he was still in the hospital for his first flare. He started at 7.5 mgs a week. He's currently on 15mgs a week. It usually takes about 6 weeks or longer for the medicine to start working. We saw the difference in symptoms while Josh was still at the hospital because Josh started getting IV prednisone, too. That made the biggest difference for him. He had pericarditis and enflamed spleen, his white blood cell count was sky rocketing, he had lost a lot of weight. A lot of classic symptoms. Before the diagnosis was made and before he needed to be hospitalized, he had tried Advil, Naprocyn and indomethacin. The NSAID's alone did basically nothing to help him. He needed the stronger meds, quickly. His was a very severe case. Fortunately, Josh has responded really well to methotrexate, with very few side effects. Just some tiredness the day after dosing. For a while, he had chapped lips, so bad they would scab. We never knew if that was a symptom of MTX though, because it wasn't the mouth sores some people experience. And eventually, it stopped happening, even though my son continues the drug. He also went through a period of a few months when he would get thrush on the inside of his mouth but that was treatable, too, and not necessarily caused by the MTX. He's been taking folic acid everyday, except on the day of MTX dose, and that seems to have helped really well to prevent any unwanted side effects from the drug. If your daughter needs MTX, the doctor will probably want her to take folic acid, too. A lot of times, I've heard that most kids are able to wean off the prednisone after beginning MTX. Unfortunately, my son hasn't been able to. And he takes two DMARD's: MTX and Hydroxychlroquine. I also have read a couple articles suggesting that the sooner one starts MTX or other DMARD therapy, the better the long term results. These are the disease modifying anti-rheumatic drugs that can actually slow down the disease process and the rate of joint destruction. For us, it's been sort of like an insurance against future damage, rather than a medicine that helps my son function better on a day to day basis. That's the way I see it, at least. If Josh were to be late with a dose of prednisone or indomethacin, he would start feeling really awful, really quickly. If he were to be late with a dose of MTX, he wouldn't even notice a difference, really. I did see how after he began taking this med, his white blood cell count, though still high, came down closer to a more normal range pretty quickly. Right now, we're at another crossroads. He may need to go to the injectable form of MTX. Not so much to decrease side effects, but to get more effectiveness from the drug. He's basically maxxed out on ALL the regular meds and even today, woke up with a fever and lots of stiffness and joint pain. But like I said, he seems to be in the minority, with regards to still having so many symptoms even with the combination therapies. His is a tough case. But one of these days, we'll have it figured out.... I hope. Good Luck, Georgina Skis@... wrote: > Has any one else tried that kind of thing. > I.e. waiting on only an anti Inflammatory inorder to evaluate things? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 1999 Report Share Posted June 16, 1999 Hi Georgina, Thanks for all the info on the MTX. My thought is that why wait till things get really bad to start the MTX, because we would probably have to have the prednisone too and then try to taper if is ness. I called the Doc's today to see if they think should start the MTX now to have time to let it start working. If she gets really bad after starting it then we would probably need the Prednisone too, to tide her over. I'm thinking of the MTX like an insurance policy too. Besides how bad is bad? What do most people put up with on a daily basis? has mostly normal days. Lots of grumpiness especially in the A.M. for about 3 hr. Generalized discomfort all over and no walking for about an hour. Some days she may walk funny for most of the day other days she is fine. She gets a temp about twice a week (at the moment) and has been 12 days now without Solumedrol. She takes indocin 3cc X 3 daily and Zantac 2.3cc X 2 daily. Feveral (Tylenol suppository) when she has a high fever. May be that's really just fine and we don't need any more meds. I feel though that if maybe the MTX might make her more normal every day after a couple of months and prevent future damage then maybe we should just start it now. After all activity that isn't normal and a Sed rate of 50 means that there is still unseen damage going on inside. Maybe the MTX will head that off. It's a tough choice because it's nice not to take so much medicine. The other thing is that they might start two drugs at once if we wait till things get worse or they see that her Sed rate hasn't fallen next month. Then it would be more difficult to figure out which one was causing which side effects. Of course may be I'm just impatient, and her Sed rate will just fall over the next three weeks. Does anyone have a crystal ball? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 1999 Report Share Posted June 20, 1999 is at Children's Memorial hospital in Chicago as of last night. She had been complaining of a tummy pain for several days now and we had taken her off all Meds. Her stomach became distended and her fever was high. Anyway she has pneumonia and Hepatitis. They are not sure which kinds yet although they are leaning towards a viral one where apparently the liver produces an enzyme that can quieten the JRA for a time. This may at least mean that while she is off all DMARDS and NSAIDS that she won't be dealing with ht awful pain of JRA. There may be some other problems but they are still doing tests. I'll keep you informed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 Hello, Poor ! I'm so sorry to hear about this latest news. I guess she is taking antibiotics now? I hope that she starts to recover soon and doesn't have a bad time now that she is off the meds for JRA. At least she'll be under medical supervision during this time. This wasn't related to hepatitis immunizations, was it? I hope she is not in too much pain or discomfort and that the tests they do are conclusive. So many of the children represented here are having a rough time right now. And some of the parents, too. and , , and Diego ..... please know that you are in our thoughts and that we are here for you, even if only through this cyberspace medium. Much Aloha, Georgina Skis@... wrote: > From: Skis@... > > is at Children's Memorial hospital in Chicago as of last night. She > had been complaining of a tummy pain for several days now and we had taken > her off all Meds. Her stomach became distended and her fever was high. > Anyway she has pneumonia and Hepatitis. They are not sure which kinds yet > although they are leaning towards a viral one where apparently the liver > produces an enzyme that can quieten the JRA for a time. This may at least > mean that while she is off all DMARDS and NSAIDS that she won't be dealing > with ht awful pain of JRA. There may be some other problems but they are > still doing tests. I'll keep you informed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 It's looking like she has an auto immune liver disjunction type of hepatitis. Tomorrow is a liver biopsy so I'll know more in a couple of days. She is very sick today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 Hello , Good luck tomorrow, with the test. Your family will be in our thoughts. I hope will be feeling better soon. Take care, Georgina > From: Skis@... > > It's looking like she has an auto immune liver disjunction type of hepatitis. > Tomorrow is a liver biopsy so I'll know more in a couple of days. She is > very sick today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2000 Report Share Posted January 4, 2000 Hello my name is and my daughter is having the cortisone shot on her ankles and her left knee on the 21of this month I hope all goes well with your son and please let me know how you and he make out thank you >From: cheri97706@... >Reply- onelist > onelist >Subject: [ ] new member >Date: 4 Jan 2000 21:20:21 -0000 >MIME-Version: 1.0 >Received: from [209.207.164.217] by hotmail.com (3.2) with ESMTP id >MHotMailBA3BCC320008D82197BCD1CFA4D9788B0; Tue Jan 04 15:24:34 2000 >Received: (qmail 26686 invoked by alias); 4 Jan 2000 21:20:34 -0000 >Received: (qmail 26490 invoked by uid 99); 4 Jan 2000 21:20:21 -0000 >Received: from 152.163.195.207 by www.onelist.com with HTTP; 4 Jan 2000 >21:20:21 -0000 >From sentto-80038-2454-shancna Tue Jan 04 15:28:53 2000 >Message-ID: <947020821.26484onelist> >Mailing-List: list onelist; contact -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >From: cheri97706@... > >i am a new member here and would like to know if anyone else has a small >child with polyarticular JRA.my son is 2 (he will be 3 in april) and was >diagnosed with JRA at 16 months old. he goes to Texas Childrens Hospital in >Houston, Tx.he has a team of wonderful doctors and nurses there. he is >currently taking 2.5mg prednisone(down from 20mg).5cc methotrexate once a >week,2 tsp ibuprofen 3 times daily, plus folic acid and leucovorin. he was >also taking sulfasalazine but it proved ineffective so we have >discontinued. now his doctors have come close to running out of options >because his arthritis is extremely aggressive-they have given us a few >options and we've decided on joint injections. if that doesnt work we may >have to try EMBRIL. if anyone can offer some advice or if anyone elses >child has been given joint injections please let me know how successful >this procedure was. my sons name is tristan and his procedure has been >scheduled for jan 14 th. thankyou! > cheri mudd > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2000 Report Share Posted January 4, 2000 Hello my name is and my daughter is having the cortisone shot on her ankles and her left knee on the 21of this month I hope all goes well with your son and please let me know how you and he make out thank you >From: cheri97706@... >Reply- onelist > onelist >Subject: [ ] new member >Date: 4 Jan 2000 21:20:21 -0000 >MIME-Version: 1.0 >Received: from [209.207.164.217] by hotmail.com (3.2) with ESMTP id >MHotMailBA3BCC320008D82197BCD1CFA4D9788B0; Tue Jan 04 15:24:34 2000 >Received: (qmail 26686 invoked by alias); 4 Jan 2000 21:20:34 -0000 >Received: (qmail 26490 invoked by uid 99); 4 Jan 2000 21:20:21 -0000 >Received: from 152.163.195.207 by www.onelist.com with HTTP; 4 Jan 2000 >21:20:21 -0000 >From sentto-80038-2454-shancna Tue Jan 04 15:28:53 2000 >Message-ID: <947020821.26484onelist> >Mailing-List: list onelist; contact -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >From: cheri97706@... > >i am a new member here and would like to know if anyone else has a small >child with polyarticular JRA.my son is 2 (he will be 3 in april) and was >diagnosed with JRA at 16 months old. he goes to Texas Childrens Hospital in >Houston, Tx.he has a team of wonderful doctors and nurses there. he is >currently taking 2.5mg prednisone(down from 20mg).5cc methotrexate once a >week,2 tsp ibuprofen 3 times daily, plus folic acid and leucovorin. he was >also taking sulfasalazine but it proved ineffective so we have >discontinued. now his doctors have come close to running out of options >because his arthritis is extremely aggressive-they have given us a few >options and we've decided on joint injections. if that doesnt work we may >have to try EMBRIL. if anyone can offer some advice or if anyone elses >child has been given joint injections please let me know how successful >this procedure was. my sons name is tristan and his procedure has been >scheduled for jan 14 th. thankyou! > cheri mudd > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2000 Report Share Posted January 5, 2000 Hi , I just wanted to let you know my experience with the injections. This is only my opinion though. Last year when my daughter Mandy was having such a bad flare, I agreed to let the Doctor inject one knee. The doctor said to Mandy, do not worry, the area is completely numb. Well, yes the outside was, but the inside was not. I am sure other parents here have different opinions.....but Mandy was in so much pain, I felt horrible. The worst part was that it only helped her for about a month. They decided to try different meds, which is when they started her on MTX. She has been on different things, and as you well know, different meds work on different children. The MTX has it under control now. She takes 10mgs. a week. She is 12 1/2 years old, and is back swimming on her synchronized swim team. I really don't want to scare you, or make you second guess your choices, I am just telling you what Mandy went through. Take care, and good luck, Janet Moyer [ ] new member > >Date: 4 Jan 2000 21:20:21 -0000 > >MIME-Version: 1.0 > >Received: from [209.207.164.217] by hotmail.com (3.2) with ESMTP id > >MHotMailBA3BCC320008D82197BCD1CFA4D9788B0; Tue Jan 04 15:24:34 2000 > >Received: (qmail 26686 invoked by alias); 4 Jan 2000 21:20:34 -0000 > >Received: (qmail 26490 invoked by uid 99); 4 Jan 2000 21:20:21 -0000 > >Received: from 152.163.195.207 by www.onelist.com with HTTP; 4 Jan 2000 > >21:20:21 -0000 > >From sentto-80038-2454-shancna Tue Jan 04 15:28:53 2000 > >Message-ID: <947020821.26484onelist> > >Mailing-List: list onelist; contact -owneronelist > >Delivered-mailing list onelist > >Precedence: bulk > >List-Unsubscribe: <mailto: -unsubscribeONElist> > > > >From: cheri97706@... > > > >i am a new member here and would like to know if anyone else has a small > >child with polyarticular JRA.my son is 2 (he will be 3 in april) and was > >diagnosed with JRA at 16 months old. he goes to Texas Childrens Hospital in > >Houston, Tx.he has a team of wonderful doctors and nurses there. he is > >currently taking 2.5mg prednisone(down from 20mg).5cc methotrexate once a > >week,2 tsp ibuprofen 3 times daily, plus folic acid and leucovorin. he was > >also taking sulfasalazine but it proved ineffective so we have > >discontinued. now his doctors have come close to running out of options > >because his arthritis is extremely aggressive-they have given us a few > >options and we've decided on joint injections. if that doesnt work we may > >have to try EMBRIL. if anyone can offer some advice or if anyone elses > >child has been given joint injections please let me know how successful > >this procedure was. my sons name is tristan and his procedure has been > >scheduled for jan 14 th. thankyou! > > cheri mudd > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2000 Report Share Posted January 5, 2000 Hi Cherie, My daughter Mandy was diagnosed with polyarticular arthritis, at 18 months old, and she now is 12 1/2. My one piece of advice to everyone would be try to get your child active in some kind of way.......water is the best therapy!!! I know it is really hard at times when your child is in pain....believe me , I know.....but Mandy's synchronized swimming has helped her so much. She did have to stop swimming last year for awhile, as she flared really bad....but she still went in the water to just float, etc. I think any doctor would agree, it is better to keep active, then it is to not be.....It doesn't mean your child needs to swim laps or anything like that, just sitting in a whirlpool, or some kind of inside pool, and slowly move the joints back and forth......does not cause strain on the joints. It can't hurt....Take care, Janet Moyer [ ] new member > From: cheri97706@... > > i am a new member here and would like to know if anyone else has a small child with polyarticular JRA.my son is 2 (he will be 3 in april) and was diagnosed with JRA at 16 months old. he goes to Texas Childrens Hospital in Houston, Tx.he has a team of wonderful doctors and nurses there. he is currently taking 2.5mg prednisone(down from 20mg).5cc methotrexate once a week,2 tsp ibuprofen 3 times daily, plus folic acid and leucovorin. he was also taking sulfasalazine but it proved ineffective so we have discontinued. now his doctors have come close to running out of options because his arthritis is extremely aggressive-they have given us a few options and we've decided on joint injections. if that doesnt work we may have to try EMBRIL. if anyone can offer some advice or if anyone elses child has been given joint injections please let me know how successful this procedure was. my sons name is tristan and his procedure has been scheduled for jan 14 th. thankyou! > cheri mudd > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2000 Report Share Posted January 5, 2000 hello and thank you for your input it is very important for me to be informed will be put under for this that they can do all three joints so I hope she will not feel any thing. Did it hurt a lot the next day or was she ok? I am afraid of that happening I am doing this so that (hopefully) can get some range back in her ankles she has toe walked for almost a year now so this is a last ditch effort well thanks again >From: " Janet & Gilbert Moyer " <gjam@...> >Reply- onelist >< onelist> >Subject: Re: [ ] new member >Date: Tue, 4 Jan 2000 22:42:15 -0600 >MIME-Version: 1.0 >Received: from [209.207.164.249] by hotmail.com (3.2) with ESMTP id >MHotMailBA3C0860007BD82197E6D1CFA4F90CA90; Tue Jan 04 19:41:21 2000 >Received: (qmail 11833 invoked by alias); 5 Jan 2000 03:35:43 -0000 >Received: (qmail 11811 invoked from network); 5 Jan 2000 03:35:43 -0000 >Received: from unknown (209.207.164.241) by pop3.onelist.com with QMQP; 5 >Jan 2000 03:35:43 -0000 >Received: from unknown (HELO mailhost.dplus.net) (206.181.96.7) by >209.207.164.241 with SMTP; 5 Jan 2000 04:42:06 -0000 >Received: from oemcomputer ([209.116.185.31]) by mailhost.dplus.net >(Post.Office MTA v3.5.3 release 223 ID# 0-61303U4500L450S0V35) with SMTP id >net for < onelist>; Tue, 4 Jan 2000 22:37:35 -0500 >From sentto-80038-2463-shancna Tue Jan 04 19:47:09 2000 >Message-ID: <009f01bf5737$3e1bf2a0$1fb974d1@oemcomputer> >References: <20000105024200.48149.qmail@...> >X-Priority: 3 >X-MSMail-Priority: Normal >X-Mailer: Microsoft Outlook Express 5.00.2014.211 >X-MimeOLE: Produced By Microsoft MimeOLE V5.00.2014.211 >Mailing-List: list onelist; contact -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >From: " Janet & Gilbert Moyer " <gjam@...> > >Hi , >I just wanted to let you know my experience with the injections. This is >only my opinion though. Last year when my daughter Mandy was having such a >bad flare, I agreed to let the Doctor inject one knee. The doctor said to >Mandy, do not worry, the area is completely numb. Well, yes the outside >was, >but the inside was not. I am sure other parents here have different >opinions.....but Mandy was in so much pain, I felt horrible. The worst part >was that it only helped her for about a month. They decided to try >different >meds, which is when they started her on MTX. She has been on different >things, and as you well know, different meds work on different children. >The >MTX has it under control now. She takes 10mgs. a week. She is 12 1/2 years >old, and is back swimming on her synchronized swim team. I really don't >want >to scare you, or make you second guess your choices, I am just telling you >what Mandy went through. Take care, and good luck, Janet Moyer > > [ ] new member > > >Date: 4 Jan 2000 21:20:21 -0000 > > >MIME-Version: 1.0 > > >Received: from [209.207.164.217] by hotmail.com (3.2) with ESMTP id > > >MHotMailBA3BCC320008D82197BCD1CFA4D9788B0; Tue Jan 04 15:24:34 2000 > > >Received: (qmail 26686 invoked by alias); 4 Jan 2000 21:20:34 -0000 > > >Received: (qmail 26490 invoked by uid 99); 4 Jan 2000 21:20:21 -0000 > > >Received: from 152.163.195.207 by www.onelist.com with HTTP; 4 Jan 2000 > > >21:20:21 -0000 > > >From sentto-80038-2454-shancna Tue Jan 04 15:28:53 2000 > > >Message-ID: <947020821.26484onelist> > > >Mailing-List: list onelist; contact > -owneronelist > > >Delivered-mailing list onelist > > >Precedence: bulk > > >List-Unsubscribe: <mailto: -unsubscribeONElist> > > > > > >From: cheri97706@... > > > > > >i am a new member here and would like to know if anyone else has a >small > > >child with polyarticular JRA.my son is 2 (he will be 3 in april) and >was > > >diagnosed with JRA at 16 months old. he goes to Texas Childrens >Hospital >in > > >Houston, Tx.he has a team of wonderful doctors and nurses there. he is > > >currently taking 2.5mg prednisone(down from 20mg).5cc methotrexate once >a > > >week,2 tsp ibuprofen 3 times daily, plus folic acid and leucovorin. he >was > > >also taking sulfasalazine but it proved ineffective so we have > > >discontinued. now his doctors have come close to running out of options > > >because his arthritis is extremely aggressive-they have given us a few > > >options and we've decided on joint injections. if that doesnt work we >may > > >have to try EMBRIL. if anyone can offer some advice or if anyone elses > > >child has been given joint injections please let me know how successful > > >this procedure was. my sons name is tristan and his procedure has been > > >scheduled for jan 14 th. thankyou! > > > cheri mudd > > > > > > > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.