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Crohn's Disease Forum » Parents of Kids with IBD » Children and Joint Pains


 
02-06-2013, 08:31 PM   #1
Farmwife
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Children and Joint Pains

Do your children get joint pains?

Do you believe it have to do with there IBD or do you think it runs independent of their flares?

Any additional info on their joint pains would be appreciated.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine

Last edited by Farmwife; 02-06-2013 at 09:15 PM.
02-06-2013, 08:34 PM   #2
Farmwife
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I'll start.

Grace has joint pains that move. Her joints do NOT get red or hot. Just pain.
Sometimes she says she has shooting pains, like from her knee to her ankle.
For a year or two it affected her right knee the most. Now it seems to be her left knee. However, now the pains are everywhere.
I use heating pads and meds to help.
Also I have a medicated rub that I have to use now.
02-06-2013, 08:41 PM   #3
my little penguin
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When DS is flaring from Ibd per his Rheumo his joint pain also flares
Knees hips low back
Sometimes ankles or wrists and elbows
Never hot or red just sore and it moves
Now that the classic Ibd stuff is gone so is his joint pain
So his is Ibd related
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02-06-2013, 09:07 PM   #4
Devynnsmom
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Devynn gets joint pains, mainly when she's flaring. They are usually in her hips or ankles. They have been in her elbows, shoulders, and fingers. Never red, never hot, never swoolen. I def believe it is from her IBD.
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Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
02-06-2013, 09:40 PM   #5
Jmrogers4
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Jack gets joint pains when flaring - ankles, knees, hips, wrists and shoulders. Husband is hip and shoulder when flaring so yes IBD
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-06-2013, 09:51 PM   #6
AZMOM
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Claire has experienced arthritis independent of her Crohn's disease. Swelling and progressive loss of motion. Her JRA diagnosis, however, arrived 2 years prior to the onset of Crohns symptoms. Or at least the ones we could see that led to dx.

Seems this time (and a few others) have been more transient in nature and coincide with her Crohns.
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
02-07-2013, 12:31 AM   #7
Twiggy930
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My son has had leg pain that has run independent of his Crohn's flares. He describes the pain as being in the upper portion of the front of his left thigh. It got to the point where he was unable to walk on that leg for 3 months. After a huge battle we got him in to see Rheumatology and they diagnosed it as being enthesitis, which is inflammation of the points where the muscles attach to the bones. A course of prednisone cleared it up and he was put on sulfasalazine to keep the enthesitis at bay. They are going to let him try to ween off the sulfasalazine in a couple of months.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
02-07-2013, 12:57 AM   #8
CarolinAlaska
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Jaedyn gets pain in her knees, but I don't know if it is related. I think she has gotten pain in her thumbs as well (or was that her sister?). Both of my teens get pain in knees with sports... Perhaps not Crohn's related then.

I use essential oils - Cypress or Geranium or Frankincense with good results. One drop on the affected joint seems to calm it down pretty quickly.
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
02-08-2013, 08:47 AM   #9
Crohn's Mom
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Gabrielle gets almost crippling knee and leg pains when her CD is not in control ~ to the point that she can barely walk.
We took her to a Rheumy shortly after her dx, but he didn't treat her. He left it up to the specialist to get her CD under control and then he said the arthritis pain would follow. If it didn't however, we were supposed to go back to him. He was correct, and we haven't been back.
Now normally when she begins to have joint pain, we chalk it up to Crohn's and start there.
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DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
02-08-2013, 02:54 PM   #10
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KNEE PAIN

All I can recommend is that your child does not wear Tight/restrictive clothing like skinny jeans, for me it made it x10 worse.

Also, From my past experiences you should try to get your child to move their achy joints often, otherwise if you leave it it will be much more painful when trying to move them after a long period.
02-08-2013, 03:19 PM   #11
Mummygee
 
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James pulls at two of his fingers and crosses them a lot, whilst rubbing them, seems to coincide with rubbish poo days! GI told me it wouldn't be anything to do with the IBD as only effects central joints! I don't believe him!
02-08-2013, 03:25 PM   #12
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Hi, my Devon gets joint pain which I do believe is related the crohns. She has a pattern - her foot aches and swells up so she has difficulty walking then a couple of days later the crippling pains in her stomach start. If we don't get it under control, her knee, elbow and eventually her spine get painful. When she was first diagnosed it was the arthritis that led to the crohns diagnosis as the doc noticed all of the joint pain was down the one side. Up till then she had been treated for gastroenteritis, appendicitis and (believe it or not) period pain as the docs refused to believe the joint swelling and stomach probes were related - it took us three years to get a diagnosis. When she was on methotrexate she was great - no joint pain and no flare ups. It was like a miracle drug, but she developed a reaction to it so now we are searching for the right meds.

I really hope you find something that works for Grace as I know the joint pain is awful. Devon tends to rest her joints and she finds that helps, but unfortunately the painkillers are the main thing at the minute as her aza doesn't help. Thankfully she has a good rheumatologist and gastro consultant now - and they actually talk to each other!

Good luck with Grace xxx
02-08-2013, 04:22 PM   #13
parentnj
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Alec had severe joint pain when he was flaring and it was gone once we got it under control. I thinks its the CD.
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Son Alec 13yrs old - DX 11/2012
Remicade
Methotrexate 12.5 MG Oral & Zofran weekly
Folic Acid Daily
2000 IU Vitamin D Daily
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Failed - Pentasa
02-11-2013, 01:51 AM   #14
Marni's mom
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Marni has joint pain, usually ankles and or knees, too. We took her to the pedi rheumatologist to have her checked out, and he said it's not arthritis, but rather arthalgia (joint pain) related to her Crohn's disease. He recently gave her an Rx for Celebrex to be used twice a day during the times when her joints are hurting. I don't know yet it if works, as we haven't had to really use it yet.
Outings like fairs, amusement parks, long days at the mall are all usually problems for her, as she is unable to walk for that long without her joints hurting a lot.
We have rented a transport chair for the fair so that the whole family's day wasn't ruined by her pain. She's happy because she doesn't have to walk all day in pain, and we're happy because her pain doesn't cause us to cut the day short.
The only thing that I find to be a problem is the people around us who look at us and her as if to say, "Why is that kid in a wheelchair? I have seen her get out of it and walk just fine." I know I shouldn't worry about what people think, but still....
02-11-2013, 02:10 AM   #15
Crohn's Mom
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Hi Marni,

I am curious as to if your pedi rheumy is aware of the risk of a Crohn's patient taking NSAID related meds? Celebrex is in this class.
Are you aware that NSAIDS are actually a big no no for CD patients ?

I'm sorry your kiddo has so much pain, that must be so hard to deal with for you both.
And you're right...don't worry about what others think ~ there's always "one of those" in every crowd !
02-11-2013, 02:32 AM   #16
Marni's mom
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Crohn's Mom,
Yes, we're all aware of the NSAID thing, but it's kind of a last ditch fix. Nothing else works. And, as I said, we're not even sure if Celebrex will work, so it might be a moot point anwyay.

NOTHING has worked so far. It's so frustrating.

The only thing that helps her abdominal pain is Tylenol #3. I crush one to one and a half tablets and mix it with water. She takes it via her G tube. I worry about giving this to her, especially when she's in pain for extended periods of time like she is right now, but like I said, nothing else works.

We're waiting to see if the new combination of meds helps, which is Humira and Methotrexate. Technically Humira should help with the joint pain, too, but so far NADA. I'm going to wait a few more weeks, as she's only had two rounds of Methotrexate so far, but if this new regimen doesn't work, I'm tempted to stop all meds all together.

What do you all do for joint pain when your kids are experiencing it?
02-11-2013, 02:42 AM   #17
CarolinAlaska
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We haven't been at this for very long and I don't know if it would work for Marni, but we've been experiencing with essential oils, and the last two flare ups of joint pain Jae had, she put some geranium oil on her knees and it took it away within minutes. I don't know if it would have gone away anyway, but last fall when she had that kind of pain her sed rate was in the 50s, so I think it was pretty significant... there are other oils too that are supposed to work for joint pain, I think it is worth looking into...
02-11-2013, 03:13 AM   #18
Maree.
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I have been through the whole pain management system for chronic extreme pain of a different sort (Trigeminal Neuralgia) and am a huge believer in CBT (Cognitive Behavioral Therapy). CBT focuses on learning strategies to live happily with pain rather than using medication to mask and can be a really good answer to long term pain.

Was curious if this is done with children & found at least some American Children's hospitals do have CBT programs, eg Boston Children's Hospital has a whole department dedicated to Pain Management and seem to use a lot of cognitive approaches.

Perhaps you could check and see if there are any children's hospitals near you have a Chronic Pain Management Clinic and see if you can get a referral there to see what options other than medication they can offer you.
02-11-2013, 03:36 AM   #19
Stephyjane
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Ella has lots of joint pain, she also has hypermobility. Her joints are constantly clicking which never really happened before she got poorly. Her joint pain increased to the stage of not being able to walk when she started Infliximab, so they have taken her off that now. She is under the rheumatologist and they are unsure as to whether it is Crohn's related arthritis or side effects from drugs.
Ella had joint pain before Infliximab so I think it is Crohns related.
Her worse pains are in hips, knees and ankles. She uses a wobble board daily which helps strengthens her and does simple exercises before getting out of bed. Her joints do not become swollen and hot.

I can totally relate to mamis post regarding wheelchair use. We were looking around secondary schools for Ella and one day she had to use a wheelchair and the following day she was fine to walk. We did get some strange looks from the parents that were at both visits. Xx
02-11-2013, 02:09 PM   #20
Devynnsmom
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Marni's mom, we used to rent a wheel chair for Devynn when we went to the amusement park too. For the same reason. Then I saw one (brand new) at a garage sale one day and decided to buy it. We haven't needed it since! Its in my bsmt in case we ever do need it. We had people give us dirty looks and I had one lady ask me (in a VERY nasty way) why she was in a wheel chair when it was obvious nothing was wrong with her, and I was just lazy because she was too big for a stroller! I told her her life must have been pretty boring to look at ANY child and judge the child and parent that way, and to mind her #$#(% business.
02-11-2013, 02:55 PM   #21
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My daughter was just diagnosed 3 weeks ago, but we've been suffering from joint pain for the past year. She's a pitcher for her fastpitch team so we just assumed it was overuse, etc.. but I did think it was odd when her ortho guy ordered blood work to look for autoimmune disorders. It came back negative, so we just did PT and prednisone for a week. Now, looking back I think it was all Crohn's related. I'm curious to see now that we have the diagnosis if she still gets the mysterious swollen knees or shoulder pain that she used to get. I guess time will tell as we started our softball season yesterday. She pitched 2 games with no pain other than muscle soreness.
02-11-2013, 04:09 PM   #22
Johnnysmom
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Johnny had joint pain that seemed to 'move around' too. One thing our Dr. mentioned to us as a possibility was Chronic Recurrent Multifocal Osteomyelitis. It is pretty rare but can occur with crohns.

http://www.steadyhealth.com/articles...CRMO_a108.html

It can be mild or quite debilitating. The good news is most children will out grow it with no lasting effects. Prednisone is one of the treatments used.

Sorry Grace is still having pain.
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Dx Oct 11 2011 Crohns disease
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02-11-2013, 07:29 PM   #23
EthanClark
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Clark has had joint pains in knees, feet, toes, elbows, hips and hands. He hasn't complained since we started EN in December. He is doing much better. I am hoping that the pains won't resurface when he finishes his 12 weeks of peptamen. Fingers crossed.
02-11-2013, 08:46 PM   #24
Tesscorm
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Stephen had back pain for months before being diagnosed. I've never gotten a definitive answer if it was injury related or crohns related but it did improve almost 100% once he started on EN and has only rarely bothered him since???

But, when it did hurt, he swore by Tiger Balm ointment. Said it helped alleviate the pain quickly. Not sure if it would work as well on joint pain??? Farmwife, I think you tried it on Grace... did it help?

Carole, where do you buy the geranium oil?
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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
02-11-2013, 08:51 PM   #25
Farmwife
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Yes Tess, we have a off brand of that. I think it works for about an hour but she's in pain again after that.
02-11-2013, 09:42 PM   #26
CarolinAlaska
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There is a company called DoTerra that I buy essential oils through. If you know anyone locally who use essential oils, they could order it for you or let you try theirs if they have some. If not, I could try to find a sample bottle and send you a little portion of mine to see if it would work for you...
02-11-2013, 09:49 PM   #27
Crohn's Mom
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What is this essential oil that you all speak of ?

JJ has been dealing with right knee pain the last month (ish) and also lower back spasms - I have used a cream on it called Flexall tonight to try and sooth the back because its spasms so much.

However, if these oils work and are natural I would be interested in them.



Poor kid is walking around like an old man these last few days -

I'm actually wondering if the HGH injections may have something to do with it ...?
02-11-2013, 09:59 PM   #28
Tesscorm
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Thanks! Let me look around here... I wonder if health food stores would carry it??
02-12-2013, 01:52 PM   #29
CarolinAlaska
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Thanks! Let me look around here... I wonder if health food stores would carry it??
You want to make sure you get a high quality brand. Health food stores may carry it, and may be fine, but you want to get as pure of oil as you can - definitely organic or better than organic if possible.

I can sign anyone up who wants to order the oils, yourself through DoTerra or I could order them for you, but if you have a local product consultant that would be preferable so you don't have to wait for them to come through from Alaska . I'd like you to try them first to make sure they work for your child. DoTerra oils are all natural and certified pure. Maybe if enough people are interested, I can get a bunch of sample bottles and send them out to folks who would like to try... It certainly isn't my goal here to do a business with you all, but if you can't get them locally I'll see what I can do to help. I've been really pleased with the results we've found.
02-12-2013, 01:55 PM   #30
Tesscorm
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I'm going to have a look here and let you know if I find anything... my daughter (with no crohns) sometimes has foot, ankle, sometimes a knee pain from her soccer and tae kwon do... she doesn't like the smell of Tiger Balm but I thought she might try the geranium oil?? I'll check a couple of stores here and let you know. Thanks!
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