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Description of systemic JRA

Systemic: Involving about 10 percent of JIA cases, systemic arthritis affects the entire body, beyond just the joints. Both boys and girls are equally vulnerable. Although symptoms can start any time during childhood, they generally emerge by or in elementary school years.

The first sign might be a stubborn fever, sometimes appearing weeks or months before your child complains of any joint discomfort or mobility issues. The fever can be quite high, appearing once or twice daily, before returning to normal. Your child might seem, by all indications, fine in between. Fevers also may be accompanied by a faint rash, one that ebbs and flares over the course of days. Often described as pinkish or salmon-colored, it’s not contagious.

Since this illness can affect the entire body, inflammation may occur elsewhere, enlarging the spleen or irritating the membranes that cover the lungs or heart. In many cases, the fever and other systemic symptoms fade over time. Eye inflammation isn't common with systemic arthritis, but your child’s vision will still need to be checked.


Does this sound like A? I forget if I've asked you this.:yfaint:
 
Saw the Pedi. She did a strep test which was negative. She thinks it is probably a virus or reflux. Said A is already on a good dose of Prilosec but we could add Maalox if we wanted. She felt her joints and did not think they felt stiff. A is still limping and favoring one arm but I guess there is no real inflammation there. If Elavil is supposed to help with pain it's doing a pretty terrible job. She's soaking in Epsom salts now but I don't think it is going to make an earth shattering difference.
 
Oh my. :( :ghug:

It sounds like it is time for someone to go with their gut, step up to the plate and diagnose your girl. I would be the first to say not to treat something that you are unsure of but by the same token all this dancing around the edges and not wanting to label is just resulting in a life of misery for A and for you having to stand by and watch it. :ghug:

If the GI is 95% sure then I know there would be a lot of people that would like be 95% sure of anything including me. The stomach ulcers (dark/black blood) the small bowel ulcers (red blood). Elevated faecal Calprotectin. We all know that it is not normal to bleed from the bowel and there are only a half dozen or so things that cause it.
The oesophagus isn’t involved so rule that out.
If we take cancer out of the equation all together then we are left with a handful of things:
Stomach - Gastritis, IBD, ulcers.
Small bowel - Infection, IBD.
Large bowel - Infection, IBD, polyps, diverticular disease, blood vessel abnormalities, ischaemia.
Lower large bowel - IBD, haemorrhoids, fissures.

Given the other issues present then that has to be taken into consideration and given their extra intestinal inflammatory type presentation then autoimmune must surely be the highest on the radar. I am not saying it is IBD but given the level of gastrointestinal involvement, including clinical, then Crohn’s would have to be the frontrunner in my book.

Dusty. xxx
 
Does the pain in her joints get better with movement? If it's some kind of inflammatory arthritis, often the pain gets better with movement. My girls have a really hard time sitting through class and movies and sleeping. That said, if it's a knee or a hip, walking is hard too.
Really hope A feels better soon!
 
A is still battling the knee pain but was able to dance yesterday. She placed 5th overall and was quite pleased with herself. It does seem that activity helps to ease the pain which is what makes this different from the achy joints she's had in the past. Still no swelling but I imagine if this continues the swelling will come. We're using tramadol occasionally (when she is dancing mostly) but are mostly relying on Epsom salt soaks, Icy Hot, and icing the knee to get through the day. It is just sad for a 9 year old to go through all of this and I'm becoming increasingly frustrated. It may be time to agree to the CTA and that's something I've been praying about. If it is negative then maybe the doctors can agree that she doesn't have PAN and we can explore other treatment options. I haven't given up on the Elavil just yet because it does seem to help with the diarrhea. But it does nothing for pain or bloody stools and I can only hope that in time it will.
 
The Elavil can take some time to work. For some people it takes longer then others. I am glad it is helping the diarrhea.
 
How's A feeling today DanceMom? Does she see her rheumatologist any time soon?
 
She's been on the Elavil for 2 1/2 weeks now. Either it is changing her personality or she feels so terribly that she's like a zombie, even refusing to play. I took her to the park today hoping she'd want to run and play but she just sat next to me on the bench. She isn't herself and I don't like it. I've emailed the GI about it because this can't continue. I didn't bother contacting the Rheumo because he never answers emails or returns phone calls. In fact, he still hasn't contacted me about the pathology report from the biopsy she had done mid-January.

Even if the Elavil eventually helps with the pain, it isn't going to stop the cause of the bloody stools or heal the fissure that seems to be getting worse. This is just so frustrating....
 
Your right. Even if it helps in one area, it's not worth it in others.
We might be facing this with Grace, just difference in drugs.

That's ridicules about the rheumatologist.:ymad: is he your only choice? Make sure to inform her GI that you've tried to get in touch with the rheumatologist but to no avail. Maybe he can lite a fire.


Hugs to you both.
 
Poor, poor A!
I agree with Farmwife, if you can find a different pediatric rheumatologist, it might be worth getting an appointment. Even if your current rheumatologist is good, he's no help if he doesn't get back to you! Getting her GI or even her pediatrician to call her rheumatologist is also a great idea, I've done that in the past and usually doctors are much more responsive to other doctors.
Will be thinking of you guys, hope the GI gets back to you soon.:ghug:
 
I think our Rheumo is incredibly knowledgable and I actually like him a lot, as does A. I think the problem is that he has a crappy team behind him. His nurses are lazy about checking/responding to emails (one accidentally emailed me about my daughter's spina bifida diagnosis!) and it takes them FOREVER to get insurance approval on anything (which is why the MRA of the abdomen never happened). I've made complaints with the hospital and don't plan on seeing him again unless the GI asks us to. They do talk to each other regularly about A and make decisions together. I believe we do have one other Pedi Rheumo, the wife of the Neuro I despise so much. lol
 
A's knee is the same but she's dealing okay. We are on Spring Break (and no dance this week) so we're taking it easy. Unfortunately the stools are becoming increasingly bloody so I emailed a pic to the GI. I'm sure they love opening my mail! lol I think the Elavil is helping with diarrhea and also stomach aches (yay for that!) but I also think it is more like a band-aid than a real "fix". Something is still going on in there....
 
GI finally emailed back. Basically said that her knee pain and bloody stools isn't concerning but we could do a CBC if I wanted. No, what I actually want is for my 9 year old to stop bleeding and to be able to walk without pain. I wouldn't think that's too much to ask. The advice I was given was to give it another week and then contact the Rheumo. Since it takes him a minimum of a week to get back to me we are looking at at least 2 more weeks of this crap. Frustrated is an understatement.
 
I would call the rhuemo now since its joint pain /swelling is the rheum's area even if its just an update. that way if the doc wants her seen or something else done it can be done sooner rather than later.
 
I'm not sure what the point of a CBC is? Her CBC results are routinely abnormal (always has a low WBC, other things are up and down with no rhyme or reason) and no one bats an eye. And now that she's become a difficult stick for some reason (we've tried extra fluids and heat packs on the arms...doesn't help) I don't want labs done if the results won't influence anything anyway. I think this has become a game of "Pass the Patient" and it all-around sucks.
 
Is there a diagnostic ped at your hospital?
They tend to handle kids who don't fit and take the lead on how to proceed ( or so i have been told)
 
She is bleeding. The blood test will show anemia if present. If she has anemia they need to treat it. Anemia can cause tireness.
 
Sometimes you have to pester doctors - A shouldn't have to live like this! Can you get her pediatrician to call her rheumatologist? Or can you call her rheumatologist's office and ask to actually speak to the doctor?
I know how difficult it can be sometimes to get doctors to actually listen:ghug:
 
I have done the tearful message asking to speak directly to the doc saying I had very specific questions....,
Granted I only did this twice in four years but sometimes you need answers .
 
She's never been anemic and doesn't really show any signs of being anemic now. Even if she were, adding an iron supplement isn't going to stop the bleeding or heal her knee. I'm not going to put A through 30 minutes of agony (which is how long it took to get a vein last time) only to be told - see, I told you that blood in the stool isn't really a problem.

I'll give it a week like the GI suggested. It angers me to do so but maybe miracles will happen in the next week. The Rheumo is in clinic today, and always runs behind, so no chance of talking to him this week anyway. So for now I'll give Tramadol and Miralax (because even one pill constipates her) and call it a day.
 
I am so sorry you and A still have no answers. I don't understand how the GI can think that bloody stools and any kind of joint pain is not concerning. Sending hugs and support.
 
Thinking of you, hope she does improve so she doesn't need bloods done. It is so horrible watching them struggle to get a vein.
 
I'm sorry DanceMom. :( poor A must be miserable. (And you too) I hope she finds some relief soon.


Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
 
:ghug::ghug::ghug: and more hugs!

How is A going DanceMom? Have things settled at all?

Thinking of you both. :heart:

Dusty. xxx
 
Things are pretty much the same - knee pain, diarrhea, bloody stools, EN has come back. She does get headaches/stomachaches but she feels that they aren't as severe as in the past so that must be due to the Elavil. So my non-professional opinion is that the disease is not under control but the Elavil helps to keep her comfortable (although it does nothing for joint pain). I'll email the Rheumo on Monday, per GI orders.
 
We're still doing mtx. She had her shot last night actually. The GI felt that the dose was adequate for her size so there was no talk of him upping it (although the Rheumy said we'd give it 3-4 months and then make changes based on how she was doing). I've learned that our "plan" is ever-changing and not to count on anything the doctors say actually happening.

This has really been a rough few weeks but I'm assuming the GI wants to give the Elavil more time to work before changing any other meds or doing any additional testing. If she were only having pain I'd love that plan. But Elavil isn't going to stop the bloody stools, it won't heal the EN, it has never helped her joint pain, and it is no longer helping with the diarrhea. So the additional week before contacting the Rheumy will give us more data (because I have my lovely checklist that is a great visual to see just how crappy she's doing) and will hopefully help them understand that this can't continue. That's what is getting me through this week anyway.
 
My heart goes out to you DanceMom. :Karl: Yours must be breaking. :(

Sending healing thoughts your way. :ghug:

Dusty. xxx
 
For those of you who have kiddos with joint issues...

A's knee hurts her all the time, but definitely worse in the morning and with more vigorous exercise (like running or tumbling). The pain increases when she tries to straighten it, and when sitting with both legs out in front of her the right knee just doesn't seem to straighten all the way (like it is really tight). Does this sound about right?
 
That's exactly what happened to M when she was first diagnosed with juvenile arthritis. Her knee wouldn't straighten and was swollen. I'm not sure about the exercise part because once it became really swollen I didn't let her play soccer or anything (I thought it was an injury!).

M's knee became better after it was aspirated and she was given a cortisone shot in it. We also started on NSAIDs at that time (not sure that's an option for A?). Once more joints became involved we went to biologics.

It seems like A really needs to see her rheumatologist. I hope they get back to you SOON, this is ridiculous!
 
DS is different
His is primarily morning stiffness which goes away after a few hours if he wears hands splints at night - if not it can last till mid afternoon .
Then it gets worse again but evening or if he is staying in one position for too long ( holding a pencil etc...)
Exercise - hand putty etc help his hands feel better .

Has she seen an orthopedists since her muscles can't straighten out ?
 
Grace is stiff in the morning but horrible pain in the evening. Also Grace seems to have muscle issues but has been able to straighten. She however has been able to do PT for the last year and a half. Her rheumatologist wants her to keep up PT so she doesn't lose mobility.

Do you know how her rheumatologist dx's JRA? I've read that some want the child to have these issues for six months before declaring JRA.:(
 
M also has "morning stiffness" that lasts hours and she also has really bad evenings/nights. Sitting in one position/not moving is especially hard for her. PT has helped somewhat but she has still lost a lot of mobility in her lower back.
Our rheumatologist says 6-8 weeks I think before diagnosing juvenile arthritis. Of course, the diagnosis depends on other things too.
 
My son is same as MLP, Maya's and Farmwife kids. Morning stiffness, pain improves with movement. Also on PT for the past 3 months.
 
Well, A has another competition this weekend so we're hoping for the best. We've packed the Icy Hot and the Ultram and she knows she needs to do some extra stretches before taking the stage.

As far as her knee not straightening all the way....I've been thinking about it and I'm wondering if it is because of the way she's been walking. She walks with a sort of limp, especially in the mornings, and it hurts her to extend her leg all the way out. I'm thinking that because of the limp she's allowed the muscles in her leg to tighten. Her pain would possibly improve with movement - if she'd move it properly without limping.
 
Sending A mega loads of squishy hugs and luck for the competition! Regardless of the outcome I know she will try her heart out, bless her. :heart: Just makes me want to cry knowing what she has to deal with :( , must be unbearable for you mum. :ghug:

I was wondering if her hamstring may be playing a part in her not being able to fully straighten her leg and hoping it would be that ‘simple’.

Good luck in all things DanceMom.

Dusty. xxx
 
Just have to give a quick update! A just danced her trio and she rocked it! Her tumbling was the best she's ever done on stage! Lol She said her knee was killing her but she knew she could tough it out for 2 minutes. I'm so proud of her! Awards in a few hours!
 
:ywow::ywow::ywow::ywow::ywow::ywow: That is brilliant!

Mega well done’s to A. What an absolute champion she is. :medal1:

:mademyday:

Dusty. xxx
 
Way to go A! She really is such a tough little girl, DustyKat nailed it when she called A a champion!
 
The competition is finally over (this was an exhausting weekend). A danced her solo today and she was amazing. She won Stage Presence award and 1st place overall. She's ecstatic and I'm ridiculously proud of her. Her knee pain hasn't let up and now she has another sore throat so I'm assuming it's another cold/virus. I'll be sitting down to email the Rheumo tonight!
 
OMG!!! That is phenomenal!!! :dusty::dusty::dusty:

What an amazing young lady you are A and such a wonderful role model to those around you. Well done! :award2:

:mademyday:

Dusty. xxx
 
Wow, that is amazing!!! You must be so incredibly proud of her!!

:dusty: :medal1: :dusty:
 
Thank you all for the kind and encouraging words! I am incredibly proud of her and I know she will cherish that moment of hearing her name announced as "champion" for a long, long time.

I did email the Rheumy yesterday but no response yet. The Pediatrician feels A has another virus causing the sore throat and ear pain. She said her ear is not infected but the Eustachian tube is inflamed. She gave her Nasonex and said to use Tylenol for pain. So far no relief but we're trying to be patient.
 
Nasonex takes at least two weeks to start working and peeks at 6 weeks.
Does she see an allergist ???
Since I assume pollen is very high in your area right now.
Some don't test positive for allergies but still react for a few seasons before the tests are positve .

Hugs
 
A has had many allergy tests in the past but did not have environmental allergies other than mold. I'm almost positive this is a virus because my husband has a sore throat and nasal congestion as well. A few years ago A had an ear infection that didn't respond to antibiotics and we used Nasonex to reduce the swelling. She felt relief after 2-3 days of using it. It doesn't always take 2 weeks for results and we're hoping for faster relief this time around as well. Between her knee, this virus, and now her fissure getting worse she's becoming pretty frustrated and irritable. It would be nice if the Rheumo would at least respond to my email.
 
A is basically the same. Her knee does seem to be getting better but now she tells me her back has been hurting all week and feels as if it needs to pop. If it isn't one thing it's another. Her ear pain is easing up some but her throat is still sore. The BMs are becoming more obvious with blood so that does concern me. But still no response from the Rheumo. At this point we may as well just wait until her GI appointment that's in a week and a half.
 
{Hugs} to you and your girl, DanceMom. :ghug:

:hang: mum. You are doing a brilliant job keeping on top of things.

In my thoughts. :heart:

Dusty. xxx
 
The Rheumo nurse finally emailed. That only took 5 days....

They want to see her on Monday. I'm hoping they will either increase the mtx or start a new med entirely. I'm not looking for another bandaid like Elavil (although I think the Elavil is worthwhile right now because it is keeping her from being so easily dehydrated). So we will have a restful weekend (other than a family funeral to attend tomorrow) and hopefully have a new plan going into a new week.
 
That's GREAT news! At least they're seeing her! I hope they pay attention to all her joint pain. Where does her back hurt?
In terms of joint pain, we started on NSAIDs and then went straight to biologics and then added mtx. But I think they would have to officially diagnose her with some sort of arthritis before adding biologics.
I hope the GI appointment goes well too.
So glad to hear that something is happening with A. She's been through enough!
 
The appointment has been changed to Tuesday but that's fine. One more day won't matter much. I've been told not to give NSAIDs due to GI issues but I'm not opposed to biologics at this point. A med change is always scary but I know my baby can't go on like this for much longer.

Maya - I'm not sure of an exact location for back pain. I'll try to get more specifics from her tonight. I was shocked to hear it was bothering her because she had never mentioned it before.
 
In M's case her GI and rheumatologist decided the arthritis was more severe than the Crohn's so NSAIDs were ok. So it's really individual but given that A's already bleeding, probably not the best for her!
Remember to ask about enthesitis-related arthritis/spondyloarthropathy -- it often goes with Crohn's (though I know that diagnosis is not 100% certain).
Really hope they're able to help A! Will be thinking of you guys.
 
Headed to our Rheumo appointment in a few! Hoping to get some answers and a plan to go forward with. Poor girl had 9 BMs yesterday, all diarrhea. Prior to that she'd gone almost 2 weeks without diarrhea so we're definitely moving in the wrong direction. I can only hope we are taken seriously and I don't get the "I see so many kids that are much sicker than she is" speech.

I asked A to be more specific about her back pain and she said the pain is very minimal but the stiffness is much worse (probably classified as moderate). She's always trying to twist and bend because she says it feels like it needs to pop. And now yesterday her pinky finger started hurting for no apparent reason. It is always something.

Also, after dancing/exercising she says her legs feel wobbly/shaky and it takes them hours to feel normal again. I have no idea what is causing this (it is a new symptom) but I hope the Rheumo can explain it.

Okay, enough rambling from me.....lol
 
Sending you loads of luck with the appointment DanceMom! :goodluck:

I can only hope we are taken seriously and I don't get the "I see so many kids that are much sicker than she is" speech.
Click to expand...

Good grief, I hope they don’t say that to you! That is awful, it’s not like you want your precious daughter to be there! Idiots! :(

Thinking of you both! :heart:

Dusty. xxx
 

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