My son is diagnosed with JRA

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hippimom2
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   Posted 5/21/2006 3:20 PM (GMT -7)   
Hi everyone.  I've posted on this forum a few times about my 8yr old son and I really appreciate all the help and support you have given me.  He had a follow up appointment with the pediatric rheumatologist on Friday and when I took him to get labs done I saw the diagnosis written on the lab sheet as Juvenile Rheumatoid Arthritis.  I've always had the feeling it was JRA or lupus just because of family history, but when I saw it written down, I was completely shocked and my brain tried to go into denial.  I'm doing a little better now.
 
Fortunately his symptoms seem to be fairly under control with physical therapy and prescription anti inflammatories.  He still has some pain and can get really fatigued especially after a lot of activity.  I just pray that he never has to take anything stronger than anti inflamms (he's on a pretty high dose of those right now).  I'm also holding out hope for remission.
 
I'm not sure what to do next - I'm planning to do a lot of reading.  I want him to be as active and as normal as he can, but I also want to teach him to listen to his body.  This is so hard for an 8yr old boy who wants to play and play and play and only quits when his body crashes.
 
Any words of advice for me on the best ways to help him or explain this to him?  He loves sports and right now he is playing baseball and either has practice or games throughout the entire week and I know this takes a toll on his body.  He's very smart and he knows that that all of these doctor visits are because of his pain and fatigue.  He's also aware of my lupus and how it affects me and knows that he probably has something similar.
 
Thanks for any words of wisdom.

Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985

Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

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elcamino
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   Posted 5/21/2006 4:09 PM (GMT -7)   

Hi Hippiemom,  I'm sure Erin will be along relatively soon--she is certainly the expert on JRA having had it herself (I think).  I'm sorry to hear that your son has it, but I'm also wondering why the doctor did not tell you about the dx?  Isn't that somewhat unethical?  You know, if you just saw the dx on the lab slip, it may just be there for insurance reasons.  Doctors have to have a specific dx to order specific tests, etc...  I know it says RA on all of my lab slips, but my rheumatologist is the first to admit that I don't have RA--most likely IBD and/or SLE.  You might want to call the pediatric rheumatologist and clarify with him that JRA is your son's dx, and the dx was not simply written on the lab slip for insurance reasons.  I would do this before you tell your son anything.

On a positive note, if JRA is in fact what your son has (and I wouldn't doubt it, just think the doctor should have told you), with proper tx, I've read that it can go into remission and he may never have another problem with it.  If it goes untreated, however, I suppose it can lead to future problems, as Erin may attest to.  In any case, I hope your son feels better soon.

 

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD; Inflammatory Bowel Disease
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


hippimom2
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Total Posts : 5403
   Posted 5/21/2006 4:20 PM (GMT -7)   
Elcamino, I wondered about it too. On my own lab sheet, it usually just says whatever symptoms I have such as arthralgias, proteinuria, +ANA, etc, etc.

The first time the pediatric rheumy saw my son he gave him a general diagnosis of spondyloarthropathy. He didn't tell us the diagnosis then either - the pediatrician told us after she got the report. I would think if he needed a diagnosis for the lab sheet he would have used the spondyloarthropathy one. I have a feeling it is JRA because even though the meds are helping his symptoms, his labs have gotten worse. His ANA is more elevated, his sed rate is higher and his hemogloben is low. Despite the pedriatric rheumy not discussing diagnosis with us, I really like him and he seems very thorough and he has a really good reputation. We'll have to make sure to talk to him more about this on the next visit.

Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985

Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

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elcamino
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Date Joined Sep 2005
Total Posts : 1744
   Posted 5/21/2006 6:38 PM (GMT -7)   

It sounds like your son's rheumatologist is not so forthcoming with information.  My lab slips say RA, as I posted earlier, but I may not actually have RA.  But, my rheumy has told me that you do have to have a specific dx for the medicines I've been playing around with.  My insurance would never pay for a tnf-inhibitor for arthralgia, or even UCTD.  I have to have a dx that has been approved for those drugs (IBD, RA, etc...).

I would still call your son's rheumatologist, or if his pediatrician has the report call him and ask about it.  JRA is a serious dx, and someone needs to talk to you about it, and certainly to your son.  I think my rheumy doesn't like to alarm his patients (me), so he will not volunteer information.  I have to specifically ask about it. 

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD; Inflammatory Bowel Disease
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 5/22/2006 8:19 AM (GMT -7)   
I will probably call the pediatrician in a week or so to see if she has gotten a report. She has been seeing my son since he was born and we all have a great relationship with her - she has been wonderful through this whole process. She has told us that she thinks he has an autoimmune disease such as lupus or JRA. I think after she ran the last round of labs and everything was more elevated, she called the pediatric rheumy to discuss everything she has seen happening to my son over the past year and a half. So that may have had an effect on a dagnosis

I completely understand the need for your diagnosis to get the meds you need, like enbrel. I pray like crazy that my son's illness can continue to be treated with prescription anti inflammatories. He's on a high dose of them (375mg of naproxen 2 times a day) but he's also extremely tall for an 8 yr old - he is off the growth charts.

Thanks elcamino. I think you are right about some doctors not wanting to alarm their patients and I wonder if my son's rheumy is that way.

Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985

Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 5/24/2006 5:48 PM (GMT -7)   
BUMP:

i did not forget about this...reading it carefully.
i do have some info & references for you hippimom.
:) don't worry, it's going to be OK. i'm sorry for the delay.
Active, Severe RA. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred; Pentasan 4G; Imuran 50mg; Dilaudid; Diazepam; Avinza 30mg; Meclizine; MiraLax & too many others.


elcamino
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Date Joined Sep 2005
Total Posts : 1744
   Posted 5/25/2006 4:23 AM (GMT -7)   

Hippiemom,  I feel terrible that your son has something autoimmune going on and I pray that they identify it so he can get the proper tx.  I can't imagine what it's like to learn that your child(ren) have the same issues that we're dealing with.  That's gotta be incredibly difficult.  I can't stand it when one of my little girls gets a fever--me and my husband worry endlessly and I check on them every five minutes.  If one of them got really sick I would be beside myself with worry.

NSAIDS, if they work for your son, can be wonderful drugs.  I know they worked well for me; I stopped taking them for GI issues.  Which is a real danger with the NSAIDS.  Even people who don't have particular GI issues (e.g., GERD, IBD), they can develop them with the NSAIDS. My rheumy is convinced that they are not the safest drugs in the world.  I think they have approved enbrel for pediatric patients.  It is an injection, but you get over it quickly.  Honestly, though, I wouldn't want to have give my child an injection even once a week.  They'd probably freak.  In any case, I know there's something out there that will help your son tremendously.  It's simply a matter of finding it.  Hang in there.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD; Inflammatory Bowel Disease
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 5/25/2006 4:31 PM (GMT -7)   
Dear Hippimom,
Wow, what a thing to happen.  I know we all feel that it's better us than the ones we love...so I know it is heartbreaking.  But I know from personal experience with kids who have JRA, they are more resilient & handle it better than most adults! :-)
 
Ok, dependng on the state you live you really should contact the Juvenile Arthritis Family Network ran out of the Arthritis Foundation.  They hold conferences & have help lines for parents, siblings & children with arthritic & rheumatic disease.
If it turns out to be a definitive DX of JRA for your son, there are FANTASTIC summer camps for kids who have JRA!  And also mini-events throughout the year.  No better way for him to learn, connect & make sense of it all.
 
From the symptoms you gave & the bloodwrok he had done, it certainly does sound like RA to me.
Keep up with the PT, that will help the most with range of motion and strength.  The PT can also be most useful in explaining how he should pace himself throughout the day, start to learn how to pay attention to when  his "breaking" point is with activity.  The importance of rest, etc.... and also can explain medications & how they work.  The PCP can do this too.
Age 8 is a very receptive time in life.  They want to gain independence, so no better time for teaching & learning! :-)
NSAIDs are the 1st line of TX for JRA and corticosteroids when necessary (they are avoided due to growth inhibition like you were worried about).  The 2nd step would to add MTX to the NSAIDs. 
 
Now's the time to let him take care of his own body!  Encourage him to express his concerns & questions.
Offer remedies that he can do  himself at any time such as:  moist heat application to joints; warm baths; swimming; paraffin dips for hands and feet; ice packs; the importance of mantaining GOOD posture while sitting & walking; get a firm mattress; not to cross legs like a pretzel while sitting or watching TV! LOL; and to wear sunglasses to protect his eyes. scool Photophobia from iridocyclitis can occur so yearly eye exams are a MUST! cool
 
The childs natural instinct to move & play will keep @ bay a lot of damage and complications...so this is a good thing!
 
I would absolutely ask the MD straight out what is going on in terms of diagnoses.  In fact, those are YOUR medical records!  YOU OWN THEM!  Get all copies of them.
Could be that the rheummy needed to put down JRA as a DX for approval of bloodwork and meds.  It is much different in adolescants regarding diagnoses codes for billing & insurance and such.  But you need to be in the know.
The doc might not have said anything because he/she might be in the stages of ruling things out still...if you do like the doc; do give the benefit of the doubt.  Doctors are a lot more careful and on top of things when it comes to children! 
 
You're going to be OK! 
With love,
Erin
Active, Severe RA. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred; Pentasan 4G; Imuran 50mg; Dilaudid; Diazepam; Avinza 30mg; Meclizine; MiraLax & too many others.


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 5/25/2006 8:18 PM (GMT -7)   
Erin, thanks so much for responding - I was hoping you would see my post. I had just now written a reply to you about some more things regarding my son, but when I went to submit it, it got lost in cyberspace. I'm too tired to re-type it tonight, so I'll do a longer reply tomorrow with a few questions I have. Thanks for all of the information - it's so helpful.

Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985

Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

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erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 5/26/2006 8:39 AM (GMT -7)   
mad  i hate when that happens!  POOF...gone! confused
also, feel free to email me. i have it under my name-thingy over there on the left. :-) erin
Active, Severe RA. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred; Pentasan 4G; Imuran 50mg; Dilaudid; Diazepam; Avinza 30mg; Meclizine; MiraLax & too many others.


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 5/26/2006 4:37 PM (GMT -7)   
After reading more about JRA, I don't really have any doubt that my son has it - thankfully I think his is fairly mild right now and I'm hoping that catching it early will also be helpful. I will definitely look into the Arthritis Network you mentioned. The pediatric rheumy already gave us info and an application for a camp for kids who have arthritis.

One of the biggest things we are working on right now is what you mentioned about helping my son be more aware of his body and when he needs to take a break or rest a little. I don't want to discourage activity, but he doesn't slow down until he collapses and feels physically sick. I read the a lot of kids with JRA have problems being aware of their pain and fatigue. I can usually tell by looking at him.

I am so grateful that he is responding so well the anti inflamms and PT. He still has a lot of morning stiffness and has a gimp to his gait, and usually collapses by the end of the day, but he doesn't complain nearly as much about pain. We are working on the things you recommended such as helping him use warm baths, heat, foot massage, and ice to help him feel better - baths feel really good to him.

Today was the last day of school until fall, so I'm going to do some reading and hubby and I can set up a meeting with school before he starts in the fall and talk about his illness and any accomodations that might have to be made, especially during flares. He also gets sick really easily (strep throat, flu, etc) and I read that sometimes parents can keep an extra set of books at home. Any suggestions about what to talk to school about?

I also had a question about shortness of breath. He's had it for a while and I keep forgetting to talk to his pediatric rheumy about it. When my son tries to run he gets very short of breath and says he has trouble breathing and it really scares him. He came home from baseball practice the other day in tears because the coach had them run and he got really short of breath. I'm planning to make an appontment with his pediatrician about this. I wasn't sure if it could be related to JRA or if it might be something else.

Thanks again, Erin. I might e-mail you if anything else comes up. I really appreciate your help.

Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985

Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 5/26/2006 8:22 PM (GMT -7)   
:-)  oh i'm so glad  everything is going in the right direction.
in terms of respiratory with RA, i know because i have it myself, there's a high incidence of chronic pleuritis, pleurisy, and inflammtaion around the lungs/ribs/and chest wall.  if i talk too long i get so short of breath it seems like i ran a mile...and terific chest wall pain too.
it gets worse on exertion, bending, lifting.
 
the doc might want to try him on Albuterol or some inhaler...just to give it  a shot.  for me, really didn't help any.  not until i started the TNF meds did the breathing problems settle down a bit.  they still get bad; but not chronic and daily.
 
for school:  i know they can have installed or placed in every room a chair for him (much better than the crappy ones everyone else gets!); he'll most likely be issued extra sick days or have over the limit days waived; extensions on projects; larger writing pens and pencils; the gym teacher will be notified too.
actually, there should be a child counselor or social worker type person/therapist in each school district that guides parents & students on how to go about getting and doing certain things regarding the school year.  i know i contacted the college's department of disability...WONDERFUL PEOPLE!  made evrything MUCH easier to cope with! 
 
be strong & take care of yourself too!
 
sincerely,
erin
Active, Severe RA. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred; Pentasan 4G; Imuran 50mg; Dilaudid; Diazepam; Avinza 30mg; Meclizine; MiraLax & too many others.


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 5/27/2006 7:15 AM (GMT -7)   
THe breathing problems you described sound a lot like what my son has.

Thanks so much for everything Erin - you have really helped.

Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985

Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/


Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 5/28/2006 6:12 PM (GMT -7)   
She's a good bean isn't she? :) We love you Erin!
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

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