Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Issues with joint pain


04-16-2013, 06:47 AM   #1
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
Issues with joint pain

This weekend our family went on a little hike. Not too far into it, Jae began having issues with hip pain (both sides). She had to rest frequently due to it. Her crohn's is not in flare, although she is still not eating much (but getting the 2000 cal/day supplements). She told me that her knee and ankle were also bothering her on the hike and after, but wasn't bothering her the next day. We were walking on snow, that was uneven, but unlike me, she wasn't breaking through much, and had an easier time of it. I do understand that she is deconditioned, but so am I, and I didn't have all that pain. Interestingly, her older sister, who is not a Crohnie, ended up with a lot of pain in her back after the hike as well which is persisting 24 hours later. Both girls get joint pain with sports (knees, hips especially).

I am concerned because she is wanting to do soccer this summer. Last fall during soccer (prediagnosis) she had a lot of joint pain that ended up showing up in her bloodwork (elevated sed rate and crp - the only time it's been elevated). What should I be doing now to prepare her to be able to play soccer successfully and with as little joint pain as possible? I know I can't give her ibuprofen... Should I be talking to her pediatrician about this? Her GI? Get her into a rheumatologist? Get her out walking more, even if it means more pain? What about sports?
__________________
Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
04-16-2013, 07:16 AM   #2
Devynnsmom
Forum Monitor
 
Devynnsmom's Avatar
 
Join Date: Jan 2012
Location: Toronto, Ontario
I would talk to the doctor. Devynn's doctors have her seeing a rheumotologist about once a year. Nothing ever shows up and every time they say her joint pains are NOT rheumotology related. When Devynn has joint pain I give her Acetaminophen. When she will take it that is. It has to be pretty bad for her to take Acetaminophen, but when she does it usually helps. I carry it with us if we will be out walking for any length of time.
Edited because I wasn't finished lol
Devynn joined up for swimming lessons. Her first lesson was 3 weeks ago but she missed because she was sick. The last two weeks she has gone. The first week she went she had really bad joint pain in her shoulder. She had a hard time swimming and doing the strokes they were working on. This past lesson she was fine when we got there, but about half way through her 45 min lesson her ankle started to hurt. When she got out of the water she told me she wants to quit. I am going to push her a bit, because it is only a 9 week lesson so she has 6 weeks left. Swimming is so good and supposed to be great for people with arthritis problems. We will talk to her GI tomorrow about it.
__________________
Samantha, AKA Devynn's mom


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
04-16-2013, 11:32 AM   #3
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
We go to a rhuemo he give exercises for DS
Recommend swimming , low stress on joints but builds muscle.
Hot packs Tylenol.
His goes away when his crohn's is under control
Which I think is key here.
You may not see the flare per say but it may not be under control either yet.
Kwim
__________________
DS - -Crohn's -Stelara -mtx-IVIG
04-16-2013, 11:47 AM   #4
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
We go to a rhuemo he give exercises for DS
Recommend swimming , low stress on joints but builds muscle.
Hot packs Tylenol.
His goes away when his crohn's is under control
Which I think is key here.
You may not see the flare per say but it may not be under control either yet.
Kwim
Jaedyn is wanting to take swimming lessons anyway. I think you are right about the Crohn's not being under control . I spoke with Ciara (older sister) she said her back has been hurting from having to carry her bookback at school (very heavy) . At least I can stop worrying about her and help her fix her problem
04-16-2013, 11:47 AM   #5
DanceMom
Senior Member
A complains of joint pain from time to time but it is hard to tell if it comes from her GI issues or strain from dancing and being an active kid. She mostly complains about her ankles and wrists, sometimes her hips. We use ice or heat after dance (if she complains), sometimes just a hot shower is enough to help. Tylenol if she needs it. I'll also wrap her ankles or wrists before dancing/tumbling if the problem persists. I think exercise is extremely important so I encourage her to work through her pain (unless there is an obvious injury).
04-17-2013, 09:21 AM   #6
ChampsMom
Senior Member
 
ChampsMom's Avatar
 
Join Date: Mar 2011
Location: North East Coast - USA

My Support Groups:
I would also talk with an orthopedic doctor - when Alex injured his wrist we spoke with him about meds, what to do because no ibuprophen. He told us he has several patients with Crohn's and there is a topical anti-inflammatory that is now available that they have all used and is very successful. He said it is prescriptive, but it is wonderful for joints, aches, etc. I think it would be worth the phone call.

Also, can she add Omega 3's to her diet (supplemental or tons of salmon) - helps with joint issues. Alex tends to have ankel issues during baseball - but no issues with ice skating (different stress on the joints).

Good luck!!
__________________
Shell

Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
Prayer
Priesthood Blessings
04-17-2013, 03:57 PM   #7
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
Thanks, Shell. I would still be cautious with topical anti-inflammatories. They still get systemically absorbed and can still cause GI distress from increased acid production (I think). It is worth asking though. I'll have to look into Omega 3s. She does eat fish, but not "tons".
04-17-2013, 04:31 PM   #8
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
OJ has "omega -3" in it. just a thought
04-17-2013, 05:00 PM   #9
Gre8tDane
 
Gre8tDane's Avatar
 
Join Date: Apr 2013
Location: Connecticut

My Support Groups:
Def need to get that sed rate checked again and every three months.
RA with UC or CD they say is not common but I see it a lot.
If I don't take my Plaquenil my sed rate is so off I hurt all over.
Even on it my hips almost always hurt but even hiking not a rough trail will
start little things like they experienced over the weekend.

They tell you to keep active but it can be hard when you experience pain.
Just keep being as positive as you can. I find taking a dog with you when hiking makes me forget the pain unless it is horrible because I enjoy being with the dog and just being peaceful so much.

Good luck.
__________________
Vicki

Gre8tDane Momma

Medications:
Remicade IV Infusion - every 8 weeks.
Plaquenil - 200mg 2x daily
Celexa 40mg bedtime
Calcium- 600mg / Vitamin D 400IU
Iron - 45mg 2x daily
Sublingual B-12 1000MCG
Folate
Probiotic


Illness:
Crohn's - 2009
UC - 2012
Indeterminate IBD - 2012
Fibromyalgia - 1993
Rheumatoid arthritis- 1993
Reflex Neurovascular Dystrophy -RSDS - 1993
Several spinal fusions
04-17-2013, 11:36 PM   #10
Twiggy930
Forum Monitor
 
Twiggy930's Avatar
 
Join Date: Feb 2012
Location: Canada

My Support Groups:
We have had significant joint pain around here. Actually, it was technically enthesitis and my son felt the pain in the front of his upper left thigh. We ended up seeing Rheumatology and they were GREAT. If you have any concerns about significant joint pain I would push to see Rheumatology because as our pediatrician told me IBD and joint pain go together like a horse and carriage.

For the odd pain here and there we use acetaminophen and it sometimes works. we also use a rice bag for heat and alternate it with a cold pack.

We were told to encourage him to do as much activity as he feels able to do. If it hurts he stops.
__________________
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.
04-18-2013, 12:12 AM   #11
Artisan105
Yondaime
 
Artisan105's Avatar
 
Join Date: Mar 2013
Location: Avondale/Phoenix, Arizona

My Support Groups:
The prednisone is linked to pain around the joints or the bones. The steroids make the bone and ligaments to be weak/fragile. I dislike prednisone... we are no longer friends
__________________
Steven

Current Meds:
(Remission)
-Asacol 400mg 2/day.
-Remicade 500mg 8weeks(IV).

My Crohn's Story:
http://www.crohnsforum.com/showpost....29&postcount=1

My Suggestions:
http://www.crohnsforum.com/showpost....43&postcount=2

My Music List:
http://www.crohnsforum.com/showpost....72&postcount=1
04-18-2013, 02:45 AM   #12
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Joint pain is not something we've dealt with, but my son gets sore muscles from the sport now and again. We were told that an anti-inflammatory gel (one ok for their age) is ok to use as it should be working very locally and only a minimal amount would be entering the whole system.
Hope she manages to do some sport. I think it's nice to have something to focus on and enjoy, but I do worry when they have to miss it, whether it makes them feel worse. Andrew has missed quite alot of football mainly through tirednesss and I can see it upsets him that he can't go. Life is complicated!
04-18-2013, 02:51 AM   #13
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
We were also told anti-inflammable gel should be ok occassionally. The chemist said if we wanted to avoid all anti-inflammable agents, he would be telling us to avoid celery as well.
__________________
Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)

Last edited by Catherine; 04-18-2013 at 07:49 AM.
04-18-2013, 07:32 AM   #14
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Celery Catherine????????

Grace does have a rub for her joint pains with NSAID's in it BUT I only use it sparsely and never put it on after a shower or bath!
__________________
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
04-18-2013, 07:54 AM   #15
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
The chemist was explaining although he our couldnot recommend there use with crohn, he felt the risk would be similiar to eating celery. Celery has anti-inflammatory properties too.

On my phone but google celery and anti-inflammatory.
04-20-2013, 10:30 PM   #16
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
We have to avoid celery anyway due to the high fiber... Thanks anyway!

I did get one clue to her problem on Wednesday... she grew 3/4 inches in a week! I think that would hurt anyone's joints! She gained 3 lbs as well!
04-21-2013, 12:22 PM   #17
ChampsMom
Senior Member
 
ChampsMom's Avatar
 
Join Date: Mar 2011
Location: North East Coast - USA

My Support Groups:
Hoot! Hoot! Growth!! Weight gain!! LOVE IT!!!!!!!!!!!
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Issues with joint pain
Thread Tools


All times are GMT -5. The time now is 04:11 AM.
Copyright 2006-2017 Crohnsforum.com