Inside Story of a Young Person Living with Juvenile Rheumatoid | Rheumatoid Arthritis Warrior

Inside Story of a Young Person Living with Juvenile Rheumatoid

Today’s blog is my response to an email from a reader about an appointment with her daughter’s rheumatologist. This family travels for hours to see an expert pediatric doctor in one of the best hospitals in the country.

Hi Kelly!

I guess when they say all good things must come to an end, IT’S TRUE 🙁

I can’t even begin to tell you how discouraging, frustrating, disappointed, angry, tearful a doctors appointment could be

We went to (city) due to the amount of pain K was in, of course we saw him two weeks earlier than expected. The pain has been unbelievable and keeping her from doing what she loves to do (SPORT) & SCHOOL. 🙁

juvenile rheumatoid knees swellingThe doctor comes in and checks her over, checks her range of motion in her knees, ankles and looks at her back. He then tells her to sit up and says, “I think it’s time we have this conversation. I have given you may different meds with the Enbrel and none of them seem to be helping you, I don’t want to give you pain meds because that forms bad habits and even the prettiest nicest girls like you and get into trouble with them. Addiction is a terrible thing and it ruins lives. (We never asked for pain meds either.) And there comes a time when you have to learn how to deal with this pain on your own, because when you tell mom, she tells me and I don’t want to add another med because the side effects outweigh the benefits of some of the meds.”

After the speech about learning to deal with this on her own, he then said to K, “If the pain is still bad let mom know.” I said to him, you don’t want my daughter complaining because I bother you with her pain, and yet you want me to contact you when she’s hurting? How does this make any sense? If she’s not allowed to complain then why would I inform you? If she has to suck it up, then I will too and will stay up all night with her to comfort her, he told me not to do that!! I told him he will not be hearing from me. I also said to him, so basically this appointment was to let us know that we were bothering you too much and K should learn to suck it up and deal with her pain???

With no words of a lie Kelly, he giggled and said, “Well I’m sure we can find better words!!”

K was crying and so was I …my husband was extremely quiet. The doctor was saying stuff to K “Look at your mom, she is biting her tongue and is really upset with me, I may have to take her to the surgeon next door to fix her tongue, and your father he at a loss for words?”

I told him I was really upset with him, and “surprised that he would even say stuff like that to us. I also told him that this appointment is starting to head in the direction of what all the (city) doctors have said to us, 1. Your pain isn’t that bad 2. I’ve given you all I can, none of it’s working, 3. What’s next Dr.? Are you going to tell me that I need to put her in behavioral intervention too? He said, “NO!!!I believe she has pain; she has JIA, her knee and ankles have limited motion and swelling, that’s why she’s on the Enbrel, which is working because the disease hasn’t worsened her joints. I want to see you back in a month!”

All this is going on even on meds so he can’t do anymore to help her??? At one point he wanted to put her on the Remicade and now he doesn’t???

I just don’t understand rheumys and this disease!!!

So needless to say K hasn’t improved any since we saw the doc 10/8 the symptoms continue and I just go with the med plan he has for her…Enbrel!! Why do these docs think Enbrel and Humira are the magic meds and that your RA will be fine in NO TIME? 18 months on this med and she continues to swell have limited motion and pain. Oh well I guess we will never find the perfect doctor, but I am NOT GIVING UP THIS FIGHT. I will FIGHT until it KILLS ME and I’ve exhausted all measures.

Sorry for bending your ear…just thought I’d give you an idea of what happened at our last rheumy appointment I will also send you a pic of her knees…it’s amazing!!!

Love,

N

My response

Dear N,

I read your letter on my phone last night in bed because when I see that an email from you came, I have to check it right away to make sure K is ok. Of course the first thing I want to tell you is that I’m sorry you as a mom are watching your child suffer. As a mother, I know how hard that is and that you’d do anything to take away her pain and health problems. Did he say anything about the chest pains?

I think of your family often. You’re doing a wonderful job getting K the best care possible and it helps her so much to have a supportive family. She is so strong, and like I told her on her birthday, I’m so proud of her. Please give her a hug from me.

As far as your appointment, I can only guess what’s in this man’s mind that made him behave like that. He sounds frustrated, but I’d hope either his parents or his mentors would’ve instilled some empathy. KB and I try to laugh about the fact that there are so many of them made in the same mold, with the same attitudes, mannerisms, and even similar looks! But seriously…

4 common problems in rheumatology contribute to your experience:

1) The doc doesn’t know that he can’t tell what her disease activity level is by just looking at her.

2) The doc hasn’t been taught what the disease feels like for her, or lived with her like you have in order to learn.

3) The doc has been taught that the disease is not as painful or debilitating, or as constant as it is for many patients.

4) The doc has been told by pharmaceutical companies (via symposiums at conferences, reps who visit him, literature he’s been provided, and advertisements) that the treatments work, like you said, to take most symptoms away.

Again, I’m sorry you’re going through a struggle to get decent care on top of the struggles of the disease. You’re both stronger than you know, and there will be better days. Thank you for letting me share your letter – I think it will help someone to know they are not alone. Hopefully doctors who read this blog will make a personal pledge that they will not treat a person in a dismissive way, even if the person is their patient.
doc says its in his head

I can’t help but wonder how much these two things contribute to the behavior of docs who don’t understand RD:

1) Inadequate training to help them understand the experience of the disease, as experienced by patients (and their families)

2) Money that’s been wasted for decades researching whether PRD are exaggerating symptoms

POSTBLOG: Listening to this doctor speak, you might never guess how he acts inside the exam room. We’ve all heard insider stories of how healthcare professionals speak about patients behind their backs, so maybe it wouldn’t surprise his fellow rheumatologists either – I don’t know. But I do know I receive many letters like N’s. And I’ve met several doctors like this one. Read about another young person with Juvenile Rheumatoid whose doctor thinks RD is not so bad: Some Rheumatologists Don’t Understand How Much It Hurts.

Recommended reading

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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52 thoughts on “Inside Story of a Young Person Living with Juvenile Rheumatoid

  • November 1, 2013 at 7:41 am
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    My heart goes out to K. Thank goodness that I have a wonderful Rheumatologist & his team who listen to me when I tell them about my pain & problems. If the meds I am on don’t work, they & I decide and try new ones. Not everything works for everyone. I am now on Xeljanz and hoping that it will work. So far, so good. Just a week in and my morning stiffness is reduced considerably. I hope K’s rheumy will “wake up” and get her on the right meds to ease her pain – God bless all of you who suffer with the RA

    Reply
  • November 1, 2013 at 9:45 am
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    As the mom of a newly diagnosed 14 year old, and was diagnosed myself at 16, this makes me so sad. The first ped Rheumy dd saw was very dismissive, despite dd’s positive ANA. He said she just needed PT and orthotics. Four years later, dd had new symptoms and we are blessed with a fabulous ped Rheumy at one of the top Children’s Hospitals in the country.
    I hope that K and her parents can persevere through this. We are blessed to be 1.5 hours from one and three hours from another top Children’s Hospital.

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    • November 1, 2013 at 10:40 am
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      Laura,
      It would be great if you could mention the name of the hospitals you use and like so much. Kelly has my permission to send you my e-mail address, or if you feel OK about sending me yours, I will e-mail you. Glad to hear that someone is happy with a rheumy….gives others hope! Thanks!

      Reply
      • November 1, 2013 at 10:59 am
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        Vi, I’m not sure how to contact Kelly. But I will post a message to you on the RAW Facebook page and you can send me a message via that. Would that work?

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        • November 4, 2013 at 5:33 pm
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          Thanks, Laura….sorry it took me so long to get back to you. I have an e-mail address for you that Kelly gave me, and I will jot you a note later tonight….let me know if I have the right address—thanks again! There is strength in numbers, as we all know, and we gain so much from each other’s experiences–thanks to Kelly!
          Vi

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      • November 1, 2013 at 11:13 am
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        We take our K to Children’s Mercy Hospital in Kansas City. St. Louis has Mercy Children’s that is also supposed to be fabulous. There is another Children’s Hospital an hour away, but none of their Ped Rheumys are Board Certified. I see how Ped. Rheumatology has changed in 26 years and it’s incredible. I just pray that my K continues to have good experiences with her care.
        I will say that our family doctor has been an instrumental part of my daughter’s care. He believes in the parental ‘gut’ and his knowing the family history with AI diseases reinforced that. My mom has multiple AI diseases, my youngest DD has alopecia, I have JIA, and dh sees his own Rheumy for inflammatory arthritis. Yes, we are a mess. lol

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  • November 1, 2013 at 10:29 am
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    I had to wipe away the tears to finish reading this post. All of us fellow warriors can understand what you are going through with K. It’s time to find a new doctor. Frustrating as this can be, I was blessed to find a great doctor almost immediately after my diagnosis 11 years ago. But you must be strong and start again to find someone who understands what this disease is doing to your mental and spiritual health as well as the physical. I can only imagine how difficult it is to ward off depression when you are dealing with uncontrolled pain. Pain meds can be taken safely and effectively at any age and it is much easier to fight the battle that is your body when you can have relief from pain. Bless all of us and continue to search for that doctor that understands, cares and is a partner in your struggle.

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  • November 1, 2013 at 12:10 pm
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    I too feel the frustration in this email, believe me if a physician spoke to me like that I would be gone in a heartbeat. Telling him why all the way out the door. I am blessed with a wonderful Rheumy, and have had difficulty with meds, methotrexate and Enbrel, now am on Minocycline because I have had such bad reactions to meds I am afraid to try anything else. Plus they think the Minocycline will help my eye issues also. Aside from meds I went on an elimination diet and am gluten free,dairy free, and soy free, have recently added back a little corn to see how I do. I also take tumeric and ginger root supplements. I just recently weaned off steroids and am having a little finger joint pain, but we will see. Perhaps some of the natural remedies and diet may help this child also. Praying for this little girl.

    Reply
  • November 1, 2013 at 1:03 pm
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    That doc was a jerk. Please find another with a better attitude. It’s tiresome to do s but his behavior boils down to verbal abuse and you and your family deserve better!

    Reply
    • November 4, 2013 at 4:43 pm
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      Sorry I didn’t answer sooner, but just saw this post. I have only been on it a week so far no improvement. Today I am also itching so don’t know if it is the Minocycline, but it could be yet another medication to which I am allergic.

      Reply
  • November 1, 2013 at 1:18 pm
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    Hello Julia
    May I ask ask you how long you have been on Minicyclin, and do you think it is helping you. I started minocyclin about three weeks ago I have had other drugs like prednosolone plaquinil and now on huimra but it is not working.
    I am hoping Minocycline will help me, and was interested to hear if it is helping you.

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  • November 1, 2013 at 1:34 pm
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    Dear Kelly – I read parts of several of your posts to Himself this AM. As usual he was appalled at the lack of compassion and basic KNOWLEDGE of rheum docs. But his reaction to the rheums that suggested or “forced” young children with JRA/JIA/JA to undergo psychiatric treatment for their pain was to blow up! He stood up, paced around the room swinging his arms with his hands in fists, and was saying things like, “I’d have to hurt him!” “What kind of sadist would treat a CHILD like that?!” “Someone should beat him to a pulp, then suggest he go to a shrink to treat his pain!” He feels rather strongly about people who don’t treat others – especially children – properly.

    What these rheums obviously don’t understand is that of all RA patients, children are MOST likely to minimize their pain. Children want to be children, to play with other children, to study, to do the “work of childhood.” They don’t have time for pain – unless it is so absolutely horrible they can’t function. If a child complains of pain, it behooves all of us, parents, family, friends, providers, to pay close attention. The 2-3 year old who can’t stand having socks or shoes put on because, “Pigs OW, Mommy!” truly has painful toes – she doesn’t just want to go barefoot – especially in the middle of a Utah winter! The middle-schooler or high schooler is more interested in being accepted in his or her social group, or playing sports, than in complaining about pain. They don’t have TIME for pain – they have the work of childhood and adolescence to do: learning, social interaction, developing into the young adult and adult they are on the way to becoming.

    These are horrific stories of abuse of the most vulnerable of a vulnerable population. Everyone needs to take note of the rheum docs that mistreat child patients like this, and do what must be done to find more appropriate, compassionate and skilled care for their child! I know: another search for another rheum doc, another umpteen miles to travel in a different direction, another person to get to know! But our children are worth it – and should receive only top-grade care from top practitioners!

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  • November 1, 2013 at 1:37 pm
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    Having been a child with SEA (and now RA) I too have had the “pain pill talk.” Seriously, do doctors have a script for this stuff? I sincerely hope that a new (better, kinder) doctor can be found. Please reassure K that she is not alone. I have had more than one physician tell me that I needed to be stronger. (Actually, I had one doctor write out a rx for psychotherapy so I could learn to handle “my problems.”) It is never easy to get good medical care. Thoughts and prayers are with your family.

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  • November 1, 2013 at 2:52 pm
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    This is just really sad. I can’t tell how old K is. The doctor’s tone is terribly condescending, even more so if she is past the 3rd grade or so. It’s terrible when adults are treated this way, but a little girl? K’s mom, the best lesson you can give your daughter is to get the heck out of there and don’t go back. No one gets to treat your family like that.

    This doctor may be suffering from compassion fatigue, burnout, or may be having personal problems. He needs to save it for his therapist or golfing buddies, though, and be more professional in the office. There are ways to tell a patient that he or she doesn’t have a lot more options (although that doesn’t sound like the case here) but this is not an acceptable manner of even doing that.

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  • November 1, 2013 at 3:14 pm
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    Kelly, what is happening to this young girl is just wrong. Her Doctor is showing his lack of knowledge. There are so many treatments for pain. Things like Massage Therapy, Acupuncture, and yes even pills can be used without leading to any dangerous addictions. To tell her not to tell her Mom is just plain bad medicine. A healthcare provider should always promote communication. This doctor sounds like he doesn’t want to hear how much he has failed his patient. I hope they keep looking for a Provider who is focused on the patient and family not their own comfort. If they live close to the Pittsburgh PA are there are some very good Rheumatologists here.

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  • November 1, 2013 at 4:37 pm
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    I am really not sure who these docs think they are. Honestly to have so little consideration for a young person, and to apply a major guilt trip upon her, come close to abuse. The family should see if there is a pain clinic they can attend. I am really lucky: my GP is also a pain specialist and he worked with me to develop a good programme for me. Yes, I am on a narcotic and no, I am not addicted. Why? Because the narcotic works to reduce pain! Also, what their doctor seems to be ignoring, perhaps because he is ignorant, is that with good pain control, a person can do what is required: be active, get sleep, etc. My GP told me that basically, pain medication enables me to do what I need to do to keep active and it all helps to work with the RA. Their doctor should be disbarred! There are also, as was mentioned by someone else, other forms of pain control. My experience: individually they do not work as well as when I combine several therapies (narcotic with therapeutic massage with gentle yoga). Good luck to the family.

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  • November 1, 2013 at 6:59 pm
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    Much more to say in response to comments and to this situation (not this family’s, but in general). My heart goes out to all w/rheum disease who are not getting adequate response or care – take heart & do not give up trying to get better care.

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  • November 1, 2013 at 9:33 pm
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    Hello, I was diagnosed with rheumatoid disease almost 3 years ago when I was 25. It quickly started to take over my life. I was put on prednisone, high doses of methotrexate, research trial of enbrel for 6 months, and other meds. Nothing worked!! It seemed like I got worse and worse. I became depressed thinking this was how the rest of my life would be like. However…it changed for the better! I was told about this medical doctor that believes in alternative methods in treating chronic illnesses. He was the only doctor who analyzed how I ate and amongst other things…rather than just prescribing me meds and sending me on my painful way! He asked me to do a delayed allergy test (ALCAT) to quickly determine what I was intolerant/sensitive to. Since I received the results and followed his instructions (it’s been 4 months now) I’ve been feeling amazing!!!!! I don’t feel pain everyday like I use to…I have energy!…I can work and live my life! I’m so much happier! Now, I have thoughts of a much better future! So it’s possible to get better and feel like you don’t have RD! I wish the best to you all! :0)

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  • November 1, 2013 at 9:52 pm
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    Oh I feel so bad for them. Sorry that they have to go through all this. I have only had two rheumys. The first was horrific and the second I thought was OK, but over time has lost interest. I hate that they, as well as the office staff, make you feel that you are a constant complainer. In between visits I rarely call the Dr. or the office. I collect my information and report when I do visit. The Dr. gets mad because my insurance will not pay for certain meds and I can not afford them…which upsets the Dr. to no end. It’s all so hard and it doesn’t have to be.

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  • November 1, 2013 at 9:54 pm
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    I am so sorry for what this family had to endure. I truly feel for them and their situation. It is terribly sad but in my experience most Rheumys are not empathetic or very understanding.

    I wasn’t diagnosed with JRA until I was 12 but definitely had it since infancy and I am now 36. I was told many horrible things over the years. One of my first experiences was being trialed as the first few JRA patients on methotrexate. My Mom was reasonably worried about me taking such a strong drug at such a young age and the doctor’s response was “do you want quality of life or longevity for your daughter?!” I always had terrible side effects to just about every drug I tried. The very last straw was Remicade. I had anaphylaxis every time the infusion began. They would pump my IV full of prednisone and benedryl just to continue it. I would also have horrible additional side effects afterward for up to two days. It was so scary, painful and upsetting that I told the doctor I no longer wanted to continue with it. She immediately wanted to send me for a pysch consult because she said I was only saying that because I was depressed! Depressed or not I’m not sure who would want to endure that.

    Something really needs to change with rheumatology. Thank you RA Warrior for your awareness efforts.

    I truly hope they find a good doctor willing to work with them. They’ll be in my thoughts and prayers.

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  • November 1, 2013 at 10:24 pm
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    N,
    Just broke my heart… I am so, so sorry that all this happened with you and your baby… Can you see if you can get referrals from the RA Warriors on Facebook? They may know good doctors that you can go…
    My RA doctor is fantastic and I am in Atlanta, GA. His name is Alan Gotlieb, just in case you are near here…
    My best to both of you.

    Neide

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  • November 1, 2013 at 10:35 pm
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    The way the doctors are treating patients is rather 19th century to me. I just told my GP that I wanted to medically retire as I’m just not up to the daily grind any more. For some reason, that just freaks the doctors out like it’s a personal affront to them. What are they expecting? There are no miracle drug cures nor is this all in our head. I hope for the sake of all RA patients that medical research catches up and is able to figure out the cause of this illness so that a cure can be found. If this girls parents can find an alternate doctor, they should fire their current one and let him know why. After all, don’t the doctors work for us? We are paying their salary after all.

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  • November 1, 2013 at 11:09 pm
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    I want to start by saying I am so sorry to hear that someone else has to go through this like I did years ago. I was diagnosed when I was 9 years old, I am now 44 yrs old and I know all to well what she is going through and her mother. When I was younger the only meds for JRA was aspirin, I was literately taking 15 pills a day, thank God I had no problems at all with my stomach. But as I got older and more meds came on the market, I found out that when you are young and diagnosed with JRA alot of the meds these days just don’t work for the disease. Believe me when I say I have been on everything and thankfully now I go to a pain specialist and he has me on a regiment of pain meds to keep me functioning and he monitors me very closely. Sometimes you have to add pain meds to even a young person, having that much pain is no way to live at all. You should be able to enjoy you life as much as you can, and not regret not doing something years down the line. I did find out from my pain dr and my rhuematologist that a anti inflammatory that is made that works great from RA and JRA is called Piroxicam. I have been on it for several moths now and I can tell a difference it is helping a little bit at a time, but you cant expect to move mountains with this disease. I wish you all the luck in the world and I would suggest finding another dr if possible, and also if Kelly would like to contact me and talk to someone who has dealt with this as a young child and now an adult please feel free to pass on my email. Good luck and you are in my prayers.

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  • November 1, 2013 at 11:12 pm
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    I want to start by saying I am so sorry to hear that someone else has to go through this like I did years ago. I was diagnosed when I was 9 years old, I am now 44 yrs old and I know all to well what she is going through and her mother. When I was younger the only meds for JRA was aspirin, I was literately taking 15 pills a day, thank God I had no problems at all with my stomach. But as I got older and more meds came on the market, I found out that when you are young and diagnosed with JRA alot of the meds these days just don’t work for the disease. Believe me when I say I have been on everything and thankfully now I go to a pain specialist and he has me on a regiment of pain meds to keep me functioning and he monitors me very closely. Sometimes you have to add pain meds to even a young person, having that much pain is no way to live at all. You should be able to enjoy you life as much as you can, and not regret not doing something years down the line. I did find out from my pain dr and my rhuematologist that a anti inflammatory that is made that works great from RA and JRA is called Piroxicam. I have been on it for several moths now and I can tell a difference it is helping a little bit at a time, but you cant expect to move mountains with this disease. I wish you all the luck in the world and I would suggest finding another dr if possible, and also if K would like to contact me and talk to someone who has dealt with this as a young child and now an adult please feel free to pass on my email. Good luck and you are in my prayers.

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  • November 2, 2013 at 1:56 am
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    Oh MY, I’m so sorry you are dealing with this quack,masquerading as a doctor. Please give him is walking papers. Enebrel did NOTHING NOTHING NOTHING for me. Remicade worked much better for a while. There is also xeljenz. Please find another doctor who is competent. The way he talked to you was shameful. I hope you can find a better doctor. This is too heart breaking. Wishing you and your family all the best.

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  • November 2, 2013 at 9:05 am
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    I read this post with tears in my eyes. From experience, I feel that it is easier to endure pain than it is to watch someone suffer with pain. From experience, I can tell you that RA pain is unlike other pain. I’ve had lots of injuries and surgeries, and flaring RA pain is unlike other pain. From experience, I can say that the pain associated with a rheumatologist telling you to suck it up, is horrible. It causes patients to lose hope. It instills fear of loss of control and composure from unrelieved pain. It leads patients to make bad decisions, and I believe that patients are at high risk for suicide when they are offered no relief from the pain. It horrifies me that physicians, with a truly limited view of their patients, and lack of empathy, have so much control over patients and their families. I’m certain it is easier to tell someone that you don’t know and might not see again for at least a month or more that you are not going to offer them relief. I seriously doubt, knowing the large number of physicians that I know, that their family members would be suffering to the degree that RA patients suffer.
    What this physician told mom about pain sounds like a script that these doctors learn in school. A past rheumatologist told me that the way to treat the pain is to treat the symptoms. He told me to keep increasing my glucosteroids. By the time I fired him I was on 80 mg prednisone daily with only minimal control of symptoms and subsequent pain from compartment syndrome caused by the inflammation. I was still in pain, prednisone was turning my bones into Swiss cheese. So I need to ask; when weighing risks with benefits, is it safer to turn bones to Swiss cheese, without any relief than to offer some relief with effective patient teaching on the risks? Patients are not considered a valued part of the health care team. Patients are not offered choices but they should be.

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  • November 2, 2013 at 9:11 am
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    I am so sorry K is going through so much pain and swelling. I too had to deal with rheumies who just don’t understand when I was a child with JRA and suffered for a long time with no real relief. As a 33 y/o with severe RA I would be in a constant flare if it wasn’t for remicade. Seeing her picture with that much swelling concerns me. It’s time for remicade for her. Mom N please push for it! She needs it. She may never be pain free but her pain level will go down and her range of motion will be so much better that she will be able to play sports again (hopefully!) I am angry at your rheumy for letting her walk out of his office without a plan with as much swelling she has! That is the first sign of active disease taking over her poor little body and she is probably very tired and weak. Please mom push for remicade, you and your daughter will not regret it. I promise. It’s been a life changer for me personally.

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  • November 2, 2013 at 9:18 am
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    I can empathize so much with this story, I was born in 1961 and at 10 months of age, diagnosed with JRA. The stories of doctors good and bad are long. Some horror stories that would make you laugh and cry. What I’d like to share in hopes it helps someone are 2 things:

    1. Doctors are not your friend or your confidant. They are your medical partner. They are not there to consider your feelings, act the way you expect or to make you emotionally handle your disease. They are a medical consultant to your condition. They are not experts, they are educated to assist you in making choices. RA is trial and error, much like Oncology. You need to learn about your disease and use your doctor as a partner to help you figure out the best treatment for you. If you expect more, you set yourself up to fail. If the partnership does not feel right, find a new partner that you feel is on the same page as you. You do not need to stick with a bad partner aka Doctor.

    2. I was lucky, I was born with JRA. Sounds funny right? But what K and millions of others are dealing with is knowing what it’s like to not feel pain, they were healthy once. That is so much harder! What K and others have to do now is resolve to the fact they now have this pain and it will never go away. It will have good days but also bad days. What has to happen now is that you have to find your *new normal*. Decide what level of pain is tolerable and decide to live life in spite of it. It will take time, but learning that no doctor is going to fix you, that no medication will cure you, and that this is just how your body is now will let you take it on and figure out YOUR personal way of moving forward.

    I hope this helps K’s mom too. I am a mom and my daughter is going through frustrating testing for unidentifiable pain and it tears me up. But I have to keep my head on and not let emotions take over. I have to help her find the right consultant (doctor) to get answers and treatment and guide her to what may be her *new normal*.

    God Bless and I hope this helps someone just a little.

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  • November 2, 2013 at 9:58 am
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    Please consider looking into my doctor’s website Goldbergclinic.com. There is a current case study of Juv.. RA success without drugs. I’ve been under his care for almost a year, and have felt the best since my diagnosis. He also can understand you because he himself had RA.

    Reply
  • November 2, 2013 at 11:48 am
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    This is so very painful for me to read. Equally painful are many of the responses. I am a retired pediatric nurse case manager for hematoloy and oncology patients. Prior to becoming a case manager I worked in pediatric special care and the general pediatric floor. All of my work was at a University hospital in California.
    Please do not accept this level of care. You are a whole person and holistic care should be provided. Not all doctors have the same empathetic capacity, that does not mean you should be treated in the manner described. The statements about pain are antiquated…in reality this mind set exists as I experienced both by report from patients with sickle cell and ‘discussions’ that became education sessions about sickle cell pain with physicians. The advice to learn to ‘cope’ with pain is ridiculous. Adding relaxation, visualization and the many non-medical therapies should be done in conjunction with pharmacological managment, not in it’s place.
    ADVOCATE immediately. Ask to speak with a medical or nursing supervisor. Ask for patient relations assistance immediately. I know this takes energy that is hard to come by when dealing with pain and chronic illness. Pain is now the fifth vital sign and the evidence supports management not ignoring. Verbalize your expectations and call this behavior to the carpet. I am not saying to start spewing. Remain calm, focused and centered (also not easy when being treated this way). This can be very difficult. I have faced this personally. I felt very minimized by my primary care physician. I was upset. I started to just leave. I worked in a teaching hospital and had the opportunity to help young physicians ‘learn’ how to listen and communicate with patients. I went back in and explained how I felt, what I hoped to have in a physician/patient relationship. Awkward at the moment…yes,yes. She remains my physician today, she is highly skilled and we communicate very well. Not all situations will end this way. But please use your voices…don’t be silent. Pain management is very difficult. There is no ‘recipe’ that works for everyone. It can be difficult finding the right combination that works for patients and sometimes other co-existing conditions prevent usage of very effective medications. I can not take nsaids due to another health concern. Hang in there and thank you Kelly for letting us know we are not alone.

    Reply
  • November 2, 2013 at 1:56 pm
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    So sorry to hear what your family is going through. As a adult that has left the rhemy office in tears I can’t imagine what it would do to me if I had to go through it with one of my kids. I also go to a supposed best hospital and this is my second rhemy and after the last appt I am seriously considering going to another hospital.

    Hoping and praying you find the a rhemy that will listen to your family.

    Reply
  • November 2, 2013 at 2:20 pm
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    This hits very close to home. My daughter is 17. She has had symptoms of RD for 3 years. She has severe fatigue, pain in many joints but especially her hands. She doesn’t have classic synovitis but has diffuse swelling in her hands & ankles, & has a trigger finger. She happens to be over weight (runs in the family & is hypothyroid) so the first rheumy ignored her. Her primary MD then put her on high doses of prednisone that helped her symptoms but didn’t help the weight issue. Then she saw a pediatric rheumatogist at a university hospital that was very demeaning and said she has “amplified pain syndrome.” She is now finally seeing a rheumatogist that practices with mine. She doesn’t yet have a diagnosis, but she is on Plaquenil & an anti-inflamatory. She is feeling so much better. Plaquenil certainly doesn’t take all of her symptoms away but she can get up for her senior year of school, spend time with friends, has lost weight, & is looking forward to college next year now. I feel like I have my daughter back & she can now have a hopeful future.

    Reply
  • November 2, 2013 at 6:51 pm
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    you should report that doctor. i wish there was a place where patients could go to just make comments on specific doctors, rate them, etc… because i have been to two rheumatologist in the past three years and both are horrible. these doctors only want to treat “well patients” not sick patients.

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  • November 4, 2013 at 11:43 am
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    I’m sorry about K’s struggle. I would just like to point out that MMR (measles/rubella) vaccines have a known medical track record of causing arthritis inflammation in children and women. It is worthwhile to ask at what time the last rubella vaccine was administered to the child, and if it was within several weeks that the swelling and pain flared up, it is most likely caused by the vaccine and should be reported. Embrel and Humira have been shown to positively worsen symptoms in time, not improve them. Please look into the abundant medical literature available on vaccine side effects. It is absolutely shocking what we consent to expose our children to based on the say-so of the medical community. We are funding and supporting this destructive illness cycle by buying into their “treatments”. It’s time to put an end to it by informing ourselves thoroughly on the toxins in pharmaceutical products that are contributing to our illnesses.

    Reply
    • November 4, 2013 at 3:04 pm
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      Shannon – please be careful about posting information that may be deleterious to someone else’s recovery – especially those who are just newly diagnosed. Enbrel has NOT been shown to advance the disease or its outcome – I don’t know where you are getting this inflammatory and incorrect information. For those considering Enbrel, it MAY work for you or it may NOT. Please do not consider this individual’s opinion when considering medical treatment for RD. Enbrel has saved my life – my quality of life, that is, which was non-existent beforehand. I recognize that it has dangerous – at times deadly – side effects, but my RD was at a point where I didn’t think the quality of my life warranted continuation.

      As for the damage done by immunizations – there is much conjecture, many “facts”, but I remember the time when many children died of measles…so, even if these “facts” are really true and not internet hype, more children are alive today because of immunizations against what used to be deadly childhood diseases. Whooping cough is becoming mainstream (once again) becuase of fear of immunization. It is not nearly as deadly as the measles was for children of my generation. Fear of immunization is also behind the recent epidemic of polio in Syria…do we really want to go back there? For those who remember…we DON’T.

      Reply
      • November 4, 2013 at 4:04 pm
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        Internet hype?

        “According to the FDA’s Adverse Event Reporting System, between 1998 and 2008, approximately 30 children using Remicade, Enbrel and Humira reportedly developed cancer. About half of the cancers were lymphomas, including both Hodgkin’s and non-Hodgkin’s lymphoma. The other cancers included leukemia, melanoma and solid organ cancers.” – See more at: http://www.aboutlawsuits.com/fda-enbrel-humira-remicade-lymphoma-cancer-children-180/#sthash.AGyHCWxj.dpuf

        (read some of the comments)

        2. “Chronic rubella vaccine-associated arthropathy.”
        Mitchell LA, Tingle AJ, Shukin R, Sangeorzan JA, McCune J, Braun DK.
        Source: Department of Pathology, University of British Columbia, Vancouver.
        Abstract:
        “Rubella immunization or infection is an uncommonly recognized cause of acute, recurrent, or persistent musculoskeletal manifestations. After routine rubella immunization, two women presented with the onset of polyarthralgia, arthritis, maculopapular rash, fever, paresthesia, and malaise with persistent or recurrent manifestations lasting longer than 24 months after vaccination. ”
        http://www.ncbi.nlm.nih.gov/pubmed/8215730

        J Infect Dis. 1985 Sep;152(3):606-12.
        Postpartum rubella immunization: association with development of prolonged arthritis, neurological sequelae, and chronic rubella viremia.
        Tingle AJ, Chantler JK, Pot KH, Paty DW, Ford DK.
        http://www.ncbi.nlm.nih.gov/pubmed/4031558

        Would you care to see some more scientific studies, or how about going and having a look for yourself? You know, I have been following your RAW articles with interest, but I’m beginning to wonder now. Perhaps consider taking your own advice, because cancer is a much worse side effect than arthritis. And vaccines are known to contain MANY toxins such as mercury. I’ll be surprised if you post this after moderation, because you are clearly the one who is misinformed. I’m not necessarily advocating against vaccines, but certainly I would advocate for much better informed consent on the part of parents. WE are our children’s health keepers, and there is no excuse for going along with gov’t hype which has been shown in many cases to be fueled by our own fears. I can go on about vaccines, but I get it that you are not interested in looking into the thousands of scientific studies that are suppressed showing how damaging they are.

        However, it was not my intention to stir up fear against vaccinations! It was simply to give a “heads up” that there could be a correlation between the two, which could help the parents in their drive to uncover a cause and a treatment.

        Reply
      • November 4, 2013 at 4:28 pm
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        Symptoms of TRAPS (TNF-receptor-associated periodic syndrome. Enbrel and Humira are TNF’s.

        The list of signs and symptoms mentioned in various sources for TRAPS (TNF-receptor-associated periodic syndrome) includes the 13 symptoms listed below:

        Fever
        Chills
        Abdominal pain
        Nausea
        Vomiting
        Muscle pain in arms
        Muscle pain in legs
        Muscle pain in trunk
        Localized tender skin lesions
        Leukocytosis
        Pleurisy
        Rash
        Enlarged spleen, etc.
        http://www.rightdiagnosis.com/t/traps_tnf_receptor_associated_periodic_syndrome/symptoms.htm

        Here are more articles describing how some patients acquire worsening symptoms with these drugs, if it matters:
        1. http://ghr.nlm.nih.gov/condition/tumor-necrosis-factor-receptor-associated-periodic-syndrome
        2. http://www.sciencedirect.com/science/article/pii/S1568997212001565
        3. http://www.medscape.com/medline/abstract/11443543
        4. http://www.parkersjourney.com/traps-explained.php

        There are many others- this is simply a sampling.

        Reply
      • November 4, 2013 at 4:50 pm
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        I would just like to add this final excerpt from a TNF-blocking drug insert that discusses some safety info on adverse reactions associated with these drugs:

        “Rarely, people using TNF blockers have developed lupus-like symptoms. Tell your doctor if you have any symptoms such as a rash on your cheeks or other parts of the body, sensitivity to the sun, new joint or muscle pain, becoming very tired, chest pain or shortness of breath, swelling of the feet, ankles, and/or legs.”
        http://www.simponi.com/rheumatoid-arthritis/understand

        So my point being not to tell people that they shouldn’t use Enbrel, but to please be informed about it and any other drugs, and watch for side effects. I say this because I have read other parent’s real horror stories of their children getting progressively sicker over time. This is not internet hype, but facts for some unfortunate individuals. And lastly, don’t just take my word for it… look into it for yourselves.

        Reply
    • November 4, 2013 at 4:49 pm
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      Interestingly, I have never in all my research read about MMR vacine being connected with RA or that Enbrel and Humira cause more damage in the long run. I am a healthcare professional working with a pediatric population and so I review the literature almost daily and have never seen this published.

      Reply
  • November 4, 2013 at 5:07 pm
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    Hello,

    This is my first post although I have been diagnosed with RA since 1980, when I was 21. It took several months and an attack in my lungs to get a diagnosis. Unfortunately for me, I was seeing a Rheumatologist who was also one of the big shots at the Arthritis Foundation. After months of doing full exams, multiple x-rays, multiple blood draws and becoming frozen to the point where dressing, brushing my hair and teeth, driving etc., were becoming impossible, this doctor told me that my symptoms were all in my head. He watched me deteriorate for 6 months and then delivered that remark. It was devastating. Thankfully, a wonderful Rheumatologist diagnosed me after big attack by doing 1 xray and 1 blood draw. He saved my life. Almost 34 years later, I am holding my own. Yes, I take a lot of meds, and yes, I’ve had a lot of surgery, but I fight every step of the way and RA or PRD will not win. I encourage all of you to fight and fight and fight. Never give in to the pain. And do not ever be afraid to walk out on a doctor like this brave mom did. They put their pants on like every one else. Some of them, I think, put them on backwards and it keeps them from opening their minds.

    I enjoy the site and will pass it along. Thank you for what you do. I would love to help although I’m not sure what I can offer but years of experience.

    Kathy

    Reply
  • November 6, 2013 at 2:20 pm
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    The simple truth: There is nothing in life more painful then seeing a child suffer, physically or from verbal abuse. That being said, years of medical training cannot change an MD’s personality or bedside manner. I was diagnosed in the mid-1960’s with JRA. As a wizened old lady, with a lifetime of meds starting with 21 aspirin a day, I know pain comes in many shapes, but the best approach with a doctor is often an informed approach (once told to me by a rheumie). Make a list of all treaments/drugs for RA (including natural), then list symptoms you need help with…pain, swelling, fatigue… and ask the doc to check which order of treatment makes best sense for your daughter’s main concerns, and for least side effects. (Give him the list, and you keep a copy, too.) Then continue to work the list until true improvements are seen. I’ve actually found some simple things that doctors never prescribe can help with pain, such as low-inflamatory food plans and warm water exercise. Lastly, NEVER give up. Miracles, often in the form of new treatments, are right around the corner. My life has been amazing and mainly pain free, and your daughter’s life holds the same wonderful potential.

    Reply
  • November 10, 2013 at 6:59 pm
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    I found your site today through and email my mom sent to my daughter Crystal. Crystal is 14 and was diagnosed in 2011 with PJIA. When i saw the email, I was about to get mad because my mom sends Crystal things and calls her all the time. SHe does it to keep Crystal encouraged I know, but Crystal always ends up feeling bad. Crystal is afraid of letting us down because she isn’t able to got to school daily and do the things other kids are doing. Reading this post has really helped me though. I know that we are not alone, but to know that someone else is dealing with pain on the level that Crystal is just helps. I hate to think of someone else dealing with this though. Crystal has taken it all: sulfasalizine, dicolenac sodium, indomethacin, methotrexate, humira, enbrel, orencia, and arava. She just started getting remicade infusions 3 weeks ago. A lady at our church takes the infusions and said that it has truly helped her. We are hoping for the same, but if the past several days are any indication, I am not hopeful. I have heard about xeljanz and have mentioned it to our ped. rheumy. but she doesn’t know enough about it yet. I can say that we have a very understanding rheumy. She listens and takes into consideration what I say and how Crystal feels. I appreciate that. If I had a doctor like the one mentioned in the post, they would probably have to escort me out of the hospital. I can identify with the longs nights, we have the all the time. I am a high school teacher and have to still get up after being up with Crystal. I pray that all of our children will be healed. I hope that you will find what she needs.

    Reply
    • November 10, 2013 at 7:08 pm
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      Dear Regina,
      Please tell Crystal I will pray for her, and hope the Remicade helps. And you have such a special mom to try to help – I know it must be hard for her to know how to help, but she must love you both so much.

      Reply
      • November 10, 2013 at 7:55 pm
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        Kelly I appreciate your response. I will most definitely tell Crystal. I know my mom loves us both. I am blessed to have a supportive husband and family. Crystal has both a big sister and little sister who love her very much. We are looking for people in our area that we can meet or correspond with. Even though we have family, Crystal doesn’t have anyone around her age to talk to. At this point, it doesn’t have to be somewhere here in MS, but someone she can relate to. Can you help?

        Reply
        • November 10, 2013 at 9:01 pm
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          Would Crystal like to contact my Kasey? She is also 14 and would like another teen to correspond with.

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          • November 10, 2013 at 9:35 pm
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            Laura, I can send Regina your email address unless you’ve already connected on FB. lmk & remind me if I forget.

          • November 10, 2013 at 9:53 pm
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            Laura I am not sure if we have connected on FB or not but please get my email from Kelly. Once we connect, our daughters can definitely connect. I also started a group on FB called Crystal’s Crew for Teens with JA.

          • November 10, 2013 at 10:39 pm
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            Laura, I would love for our girls to be able to correspond. I am not sure if we have connected on FB or not but I do give permission for Kelly to give you my email. Once we connect, then our girls can. I look forward to talking to you to. It seems like we are on the same path at the same time.

          • November 11, 2013 at 10:00 pm
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            Kelly, you can give her my email. Thanks for helping those of us with RA connect and support each other.

  • November 19, 2013 at 9:49 am
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    Hi

    Just something to take into consideration:

    Hubby was on Enbrel – Did not work
    Tried – other bio’s and now he is on Orencia. IT IS WORKING!!!!!!!

    Hope it can help K to! Worth the try!

    Reply
  • December 21, 2013 at 5:01 am
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    I hope K and her parents have had a better appointment since then or found another RD. One of the things that got my attention was the chest pains.When I was on Enbrel I got bad chest pains and they would start after my shot but not right away and then they would fade by the time of next shot time.I ended up at ER because I thought it had to be a heart problem.ER dr after doing all labs and EKG and everything was fine.Dr told me to stop using Enbrel unless I wanted to continue having chest pains.I told RD I was allergic to it and even though he did not believe Enbrel caused them (it did)he had to stop because I said the magic word allergic.I am on a different bio now and no chest pains.I hope more people are aware Enbrel can cause recurring chest pains

    Reply
  • April 2, 2014 at 8:52 am
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    I read this post with such a range of mixed emotions. I too have a daughter with JIA (more than 5 joints involved so likely JRA). And I can relate to everything said, getting help shouldn’t be this hard.

    If you are finding that traditional medicines are not controlling your daughter’s arthritis symptoms….you might want to look elsewhere for answers. While my daughter was off meds due to 2 bleeding ulcers from Naproxen….we looked elsewhere for symptom relief. A functional/integrative doctor placed her on DGL (a safe form of licorice), ginger and turmeric and we have not gone back to traditional meds. It takes about 3 months…but she experienced more relief from this and better for her body too. Her blood work shows inflammation markers are back to normal. Still have a ways to go, but we are seeing improvement for the first time. I hope your daughter finds relief.

    Reply
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