Any other kids with arthritis/enthesitis?

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Twiggy930

Twiggy930

Joined
Feb 2, 2012
Messages
848
Location
Canada
My son was diagnosed with enthesitis last year. At that time the inflammation was in his upper thigh. Now the inflammation seems to be in the back of his heel. My question is do any of your kids with arthritis ever have periods of not feeling well, kind of a overall sick/achy/feverish feeling. My son's fecal calprotectin has recently come back normal but he hasn't been able to walk on his foot in about 2 weeks now so I am wondering if this sick feeling that I always attribute to Crohn's might be attributable to the enthesitis related arthritis instead. Anyone have any thoughts on this?
 
Hi Twiggy. My son started about a year ago with joint pain. He was diagnosed with Ankylosing Spondalitis, then undiagnosed, then diagnosed with sacrolititis and is been a roller coaster. Few week ago he got Diagnosed with early Crohn's . Some people have joint pain when they are having a flare. But others have it independently of IBD activity. I know that AS can affect the Aquiles Tendon. I don't have the link with me, But I will try to get it for you. The European Crohn's and Colitis Organization has some very interesting material about Crohn's and SpA.
 
I am not able to make the link work. But maybe you can access by the following:
R Caprilli European Evidence Based Consensus on the diagnosis and managment of Crohn's Disease: Special Situations
It is a long article. The information concerning only about arthritis is
ECCO Statement 13 A. If you have any questions feel free to ask.
 
Thanks for the info araceli! What treatment is your son on for the AS? Has his new Crohn's diagnosis changed treatment plans for the arthritis? Does he ever just feel overall generally bad/fatigued from it? I am trying to get docs to take my son's overall feeling of being unwell seriously. It seems like GI likes to pass it off on Rheumatology and vice versa. Since his heel is causing him excruciating agony right now and his gut (according to the bloodwork and FC) appears normal I am going to corner Rheumatology and get them to do something. I am starting to think that AS might be looming on the horizon... :voodoo::voodoo::voodoo::voodoo: At the very least I think we have a course of pred in our future. :ymad:
 
He tried Naproxen, Sulfasadine and some others that did not work. He has not tried prednisone yet. I am trying to get him to a pediatric rheumatologist out of town. We don't have any in this city. No treatment plan yet. Unfortunately Spondyloartrides are hard to diagnose. They are what they call sero negatives, every test cames negative. I have done my research and the only thing that appears to work for both conditions, is remicade. And yes he is always tired, His pains are in cocccyx , back, neck, every single day.There are some exercises for Bone Spur that may work for his heel. Also If you take him to an orthopedic they will fit him with something for his shoe. Sorry I don't remember the name. My husband has the same problem. He and my son take Tumeric capsules for inflammation. Talk to rheumy and tell him that you believe he has IBD associated spondalitis and see what he says. Please let me know how it goes, and I will tell you what is going to be done with my son. I am not giving him naproxen any more, not good for tummy. Hope we can find something soon. HUGS
 
So far they are still just calling it Crohn's Related Enthesitis but I know they are closely following him for other signs of AS. He is negative for the HLA-B27 gene. We see a pediatric rheumatologist. They are hoping that the course of prednisone and the sulfasalazine will get it all under control. I am willing to give it a try since he did have a bunch of time that was fairly symptom free while on the regular dosage of sulfasalazine. If things go off the rails again I am going to push for a switch to Remicade. I am very interested in what treatment plan they come up with for your son. I will keep you posted on what they decide for my guy.
 
I am pretty sure it will get it under control. My son is also negative for the HLA-B27 gene. If you are positive you may never have AS but if you are negative it does not mean you don't have AS. Nice test ha. Best wishes on the treatment.
 
Mallory has enthesitis too. It has been an ongoing battle since last ear year but it has gotten really bad since January. First it was on her ankle, then her sacril joint (as diagnosis) and now it's in her knee. Our rheumy thinks this is acting up and her crohns is not under control like the GI docs think. They go by numbers even though her belt is constantly hurting. With her combined weightloss, they've finally listened and we have an mre n Monday. Depending on results, a colonoscopy.endoscopy soon following. We are now one remicade every four weeks a she usually responds within a week to the joint issues but never on the belly. We just had infusion last wednesday and she has only gotten a little relief. Frustrating! We've read that enthesitis in kids at an early age is the start AS but they hate to diagnose it without signs of damage. Treatment the same but sadly no pain relief because Tylenol is like candy!
 
True, they don't want to diagnose until signs of damage, but if damage show in mri or Xrays that means is to late.
 
I know. Doesn't quite make sense to me. That typical double edged sword we all deal with. Our rheumy did say that there was no need for extra imaging since treatment is the same. Save radiation rays. They would however, try ibuprofen, which is a no no for us. The amaze when AS shows up on images sucks and I crss my fingers we don't get to that. One big issue is enough and we could use a break. Sadly I ate comfort that there are others also dealing with the enthesitis or possible AS. I often feel a bit loony thinking there is no darn way my kiddo can have this bad of luck.
 
Hi, only new to the forum, and reading through the posts have found this one quiet interesting. Our son 11 confirmed with crohns in January 2013, heaps of problems, some of which I stated in reply to another post but for the past couple of days has been complaining of a very sore heel and ankle, where he can hardly walk on it. We can't see anything wrong. After reading all the replies here I am going to research some of the things mentioned.

Thanks for the info.

James's mum.
 
Mallory's Mum said:
Sadly I ate comfort that there are others also dealing with the enthesitis or possible AS. I often feel a bit loony thinking there is no darn way my kiddo can have this bad of luck.
Click to expand...

I feel the same way. It definitely helps me to know that we are not alone. Mallory's Mum I've re-read some of your past posts and I think that we might have the same kid. My son often gets loads of abdominal pain with no other signs of inflammation except for the enthesitis and an overall bad/sick/achy/flu-like feeling. Lab work, including fecal calprotectin, comes back normal but he definitely doesn't appear normal.
 
james's mum said:
Hi, only new to the forum, and reading through the posts have found this one quiet interesting. Our son 11 confirmed with crohns in January 2013, heaps of problems, some of which I stated in reply to another post but for the past couple of days has been complaining of a very sore heel and ankle, where he can hardly walk on it. We can't see anything wrong. After reading all the replies here I am going to research some of the things mentioned.

Thanks for the info.

James's mum.
Click to expand...

With everything else your son is having to put up with I certainly hope his heel pain goes away quickly. If it persists I would get him seen by a Rheumatologist. My son gets mild relief from putting ice on his heel, soaking his foot in a warm bath and on Monday the physiotherapist showed me how to tape his heel to relieve some of the tension on the tendon. I will see if I can find a YouTube video of how to do this.
 
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My other child has heel pain as well as back and ankle to the point of not wanting to walk.
We have a Rheumo appt soon
 
Good luck with Rheumy appointment. I am still trying to get a referral to an out of town pedi rheumy. The one that we saw, was for adults, and he expects to see my son screaming in pain or in a wheelchair in order to treat him. But I am tired of waiting, If I don't get the referral I am going on my own no matter consequences. Or I go to MEXICO.
 
FWIW, I know it sounds weird, but when I or my Crohny gets joint pain, we use lemongrass essential oil. It works right away and takes away the pain. Lately I had been having a sharp pain in my right heel in the back of the heel towards the bottom of my foot for several days. Jaedyn swears by the lemongrass for her knee pain and inflammation and so I tried it. I kid you not, my pain was gone in less than an minute and I could walk on it without pain. The pain came back the next morning when I woke up so I used it again, and again it worked quickly and seems to last a long time. I am not promoting it as a cure, but it sure helps the pain for both of us!
 
Update:

It took 9 days on 40 mg of pred but he finally can put his full weight on his foot. We have started a rather quick taper so we will see what happens. The sweaty/clammy/flushed/low grade fever stuff has stopped while on the pred. He has, however, been battling some extreme abdominal pain that started about 1 week after the foot got bad. Fecal calprotectin comes back normal as does his CRP so GI is convinced that the inflammation is under control and the pain is IBS related. Not sure I agree.

Rheumatology was VERY shocked to hear that the pred took so long to become fully effective. Has anyone else experienced pred taking about 1.5 weeks to really kick in?
 
Hi Twiggy. I am glad he is doing better. My son is on prednisone right know. He is going to be only for 5 days to see how he does. I don't see the point of only 5 days, but o well. I decided to go on my own to a rheumy, insurance does not want to pay for one, but if a pay for it, they can take my insurance away because according to them, if I can pay out of my pocket that means I don't need state insurance. Prednisone is very hard on the tummy, make sure to ask the doctor for Nexium or omeprazol to protect his tummy. Hope he gets better.
 
So we just got back from a rheumy pt appt today. We are one day short of three weeks out on remicade. Low and behold, knee pain and hot ankle. Ankle is not causing pain though. Going to get antibodies test in remicade to see if she's chewing through doses quickly. Frustrating though. Now we just wait for another week until remicade. It gives her joint relief after about 1 week.

Twiggy...on Mallory, it was about 1.5 weeks on her 2nd flare and the oral pred was doing nothing. I knew something was up when she wasn't eating us out of house and home. We ended up in hospital with iv pred to kick it into action. Our kiddos are twinsies on their issues. Our rheumy is the one pushing for them to prove remission because the enthesitis should be an issue if under control. Personally, I think they throw the IBS out there when they don't have an easy answer. Hard to think that my kiddo had zero belly problems ans now has crohns and suddenly IBS on top. Possible but not buying it until our scope shows otherwise. Hang in there.
 
araceli said:
I decided to go on my own to a rheumy, insurance does not want to pay for one, but if a pay for it, they can take my insurance away because according to them, if I can pay out of my pocket that means I don't need state insurance.
Araceli, that is madness. What do they expect you to do if they won't pay for it... I sure hope that they don't challenge you on that. Who told you they would take your insurance away if they won't pay for something your son needs? I think you may need to make your state senator/representative aware of the threats being made to your son's welfare just in case anything adverse comes of it...
Click to expand...
Click to expand...
 
Hi Carolin. My son's pediatrician told me to be very careful with what I do, they have done that in the past. I have been talking to the insurance for the past days, I have done everything they told me to do, they gave me the names of 5 rheumys on their plan, one is a nutricionist, LOL , #2 is a pain management DR. and the other 3 don't take kids. It's funny because we have a Childrens Hospital in town. So I called them back and back and back. I am going to call the state patients advocate and see what happens. I found a place in Dallas Tx who takes the insurance, Doctor has to send paperwork, and the Hospital has to approve the visit. Then we will see if insurance approves. If not I already make up my mind, I am taking him to Houston and pay my self any way I can, and then I will deal with whatever the insurance wants to do. Thanks for the advise, I will do something.
 
I find it amazing how many kiddos here have joint pain and residual stomach pain only to be told its IBS on top of crohn's and the only docs who push for joint pain free remission - in our case like everyone is the rhuemo -
Maybe just maybe the Rheumo are on to something ......
 
Hi. Just an update. My son did good on the 5 day prednisone. His coccyx pain was gone on day 3 for the first time in almost a year. YEA! Due to this, the Doctor decided to do another 2 weeks and then taper down. I gave the assistant all the information about Rheumy in Dallas for the referral. We will see if it goes thru. Any way I am happy that at least he's pain is getting down. LOVE/HATE Prednisone.
 
Good to hear your lad has responded so well araceli! :):):)

I so hope things stay settled and the referral goes through ASAP. Good luck!

Dusty. xxx
 
Hi, after two more weeks of prednisone we started tapering. It helped a lot, not all of his pain gone but a lot of improvement. I am wondering how is your son doing Twiggy?
 
Thanks for araceli. :)

It's good to hear things have continued to improve. I hope the taper goes well and your boy just keeps getting better and better. :hug:

Dusty. xxx
 
Glad to hear that the pred helped your son Araceli. Hope the taper goes well.

My son has been feeling much improved for the last two and a half weeks. His abdo pain has finally subsided and his heel pain is gone. He is still on 10 mg of pred and I will contact Rheumatology later this week to find out when they might want him to taper further. Unfortunately he broke his wrist last night when he fell off his bicycle. :voodoo::voodoo::voodoo::voodoo::voodoo: We go back on Friday to get the wrist looked at again and hopefully they will have a better idea then as to how long the splint will stay on. I was going to register him in a sailing school for a couple of weeks this summer... guess that will have to wait for a few weeks. When will this kid catch a break?!?!?!?
 
Have they done a Dexa scan Twiggy930?

How are they having you replace calcium while he has been on pred for so long?

Hope he feels better soon
 
No Dexa scan yet. That is on my list of things to ask Rheumatology later this week. As far as calcium goes he drinks large amounts of lactose free milk daily and his multi vitamin has calcium in it and he drinks 1 Boost a day. Last year we also supplemented with Tums but I hadn't been doing that this time around. I had the same thoughts regarding the break and the pred. The fall was pretty spectacular though so...
 
Total bummer Twiggy though I'm happy to hear some of the issues have subsided. Knock on wood they stay away after the taper. M has not faired so well but we've not tried pred. They've upped her remicade dosing to 4 weeks but she was getting joint symptoms at the 3 week mark giving her only about 1.5 weeks of relief. Today is day 12 out if infusion and the ankle and knee are bad. Had rheumy appt today and we are switching o humira pending scopes on Tuesday. So we are looking at med change if good scopes or surgery. All depends on the results if its JIA/AS or crohns related inflammation. Her reoccurring fevers started about 8 days ago so I'm scared to see what's in store.

How's the wrist pain?
 
WE GOT IT! We got the appointment for the rheumy in Dallas. :dusty: I am so happy, and worried, and nervous, LOL. My Daughter did good on last Remicade, normal liver enzymes :thumright::banana::banana::banana::banana: Soooo Happy.
Still don't know about Prometheous lab work for son. ( blood send to wrong lab) Going tomorrow with GI.
 
Woohoo! :ybiggrin::ybiggrin::ybiggrin::ybiggrin::ybiggrin::ybiggrin:

I hope the appointment goes well. When is it?

So fab to hear that the Remi is going well too! :dusty::dusty::dusty:

Dusty. xxx
 
Went to GI today. He accepted the lab results from the other lab instead of prometheus. (don't know why) Other lab is for Adults. Test came negative for any antibodies for CD or UC. But he said that is not 100% reliable. And since biopsies came positive for granulomas, which only appear in cancer, yersinia, GI tuberculosis and Crohn's, and he is negative for the first three, He still thinks is early Crohn's. He will keep an eye on my son, and is very interested on the outcome of the Rheumy appointment. He believes both diseases go hand to hand. My appointment with the rheumy is July 12, but honestly I don't want to have my hopes up, everything has been very strange and crazy with my son's tests. With the prednisone tapering, pain is back.
 
Hi. I hope everybody is doing ok. Our experience at Dallas Hospital was wonderful. Very nice place, Doctors and staff. I feel it was worth the trip. Lab test for IBD or crohn's came negative. GI said he is not discarding Crohn's. Rehumatologist in Dallas said that due to the granulomas in biopsies, is Crohn's, joint and back problems most likely be Spondyloarthrophaty associated with Crohn's. Blood test were done and he needs to stop prednisone before they do an MRI. So we are going back in one month. I don't know what is going to come out of all this, but I feel we are getting closer to a diagnosis in writing and more important, Medical treatment for his back and joint pain. His Crohn's is Asymptomatic right know, but I guess it has to be taken in consideration for the treatment. I am sorry if I confused you, I am confused myself. Just for the record. English is not my main language.
 

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