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Crohn's Disease Forum » Parents of Kids with IBD » How active is your IBD child?


01-12-2013, 10:16 PM   #1
Charleigh
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How active is your IBD child?

We are fairly new to this so I wonder...do you limit activity? Sometimes E gets so tired when he is too active. I think he is healing and it is getting much easier for him to be a little more active, but it is still discouraging that he cannot keep up with other boys physically. Also, just a little football in the yard and he will have at least one joint swell and cause pain afterward. Just wondering is this is normal and if it will continue to get better? I really don't know what to expect and if I should limit or encourage activity.
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01-12-2013, 10:29 PM   #2
Devynnsmom
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Devynn is active sometimes, and other times she has no energy at all. In the summer, she swims as much as possible.
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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
01-12-2013, 10:39 PM   #3
KWalker
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I don't have any kids, but I think I could answer this with my experience because I'm still pretty young. When I was in my teens I was really into skateboarding and soccer towards the end of the games/day I would be exhausted! I could definitely keep up with everyone else, just not as long it seemed. My house wasn't too far from the local skatepark but after skateboarding for a little bit, I'd have to walk home because I had no energy at all to ride my skateboard.

My legs always felt weird, and sometimes like jelly too. I used to have problems even just walking around for the day or if I was going to be on my feet for awhile but it's almost as if I grew out of it.

Keep in mind E is still very young so he's still growing, he just might be growing at a slower rate.
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Age 2 (1992)

Previous Meds:
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Remicade
Humira
Methotrexate (oral)
Methotrexate (injections)
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200mg Simponi, Psyllium
01-12-2013, 11:38 PM   #4
my little penguin
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We do not limit DS 's activity level at all. Per his Gi we were to let him do as much as he felt up to doing. If that meant only swimming one lap at swim practice so be it.
I can say when he was not in remission he would get tired easily and could only swim a single lap. Later he would take breaks between laps . We are now at the point where he can finish the entire practice without resting.(45 minutes of swimming laps).


Once your child gets to remission fatigue should generally not be a day to day issue ( ie playing backyard football )

Has he seen a Rheumo for the joint swelling???
DS sees one that one question they always ask is whether his joints get hot or swollen .
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01-13-2013, 12:02 AM   #5
DustyKat
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When my kids were kids flaring (they were teens when diagnosed) I let them set the bar. Fatigue was certainly an issue and it did curtail their activities.

Since being in remission their activities are not affected at all. They are able to do what any of their friends do but I do have to remind myself that the times they are tired really aren't any different to that of any other teenager...lots of sleeping is normal!

Dusty. xxx
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01-13-2013, 02:28 AM   #6
Jennifer
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My parents, GI and teachers only limited my activity one time in 5th grade because I have a central IV in at the time. I did collapse at school during that time and landed on my face but it healed up fine with no scar.

I bounced around all over the place when I was feeling well enough and pushed my limits a bit but its important to learn your own limits. Its all part of growing up.

After the Central line was removed I didn't have anymore restrictions.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
01-13-2013, 08:28 AM   #7
AZMOM
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We let Claire set the pace. Something she does well and other times tires easily. But we don't limit what she wants to try.

I would have that joint swelling investigated. That doesn't happen to us anymore but did when her arthritis was significantly flared.

Hope he can go like gangbusters for hours soon!!

J.
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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
01-13-2013, 10:36 AM   #8
Devynnsmom
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Charleigh, I agree with Azmom. I would check out the joint swelling as well. Devynn get joint pain. But has never had swelling and the joint has never felt hot to the touch. She has seen rheumatology a few times for her joint pain, and had blood work done. She has checked out fine.
01-13-2013, 10:58 AM   #9
Tesscorm
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I agree with having the joint pain looked into...

My son was older when diagnosed, 16-almost 17, so it may be a bit different??? Prior to being diagnosed, he was very fatigued. He somehow managed to 'attend' his regular activities but had a really tough time keeping up, would be exhausted and falling asleep very often as soon as he got home from school. At diagnosis, he was put on exclusive EN to induce remission (plus one week of IV flagyl), he responded very quickly and within 2-3 weeks was back full speed (it did take a bit more time to regain his muscle strength and endurance but the 'energy' was there).

In our experience, once the healing process took hold (even if it wasn't full remission yet), the fatigue went away.

Doctors didn't limit his activities.... he was to do as much as he felt he could.

Also keep in mind that the fatigue may be related to vitamin or mineral levels. If he is having any issues with absorption, he could be low in certain areas - David, Dusty or MLP may be able to give you advice re certain minerals/vitamins levels to have checked.

I'm not familiar with the SCD diet but, perhaps, you can add some of the (easily absorbed) nutritional shakes to his diet to boost his daily nutrition.
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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
01-13-2013, 11:16 AM   #10
Clash
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C's fatigue ran the same course as Tesscorm's son, while he was undx his fatigue dictated his days. But soon after treatment the fatigue started to fade away.

The joint pain was a major complaint when C's CD was active(he was having GI symptoms) but he hasn't complained since his GI symptoms have stopped.

I agree with getting the joint pain looked at. I don't know mechanisms by which SCD works bit possibly if he is having malabsorption issues it'll just take a little longer to take in the nutrients and obtain full healing? I hope the fatigue resolves soon and E isn't experiencing the joint pain!
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
01-13-2013, 11:28 AM   #11
S mom
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I absolutely agree with all everyone has said. My son has been very fatigued with his most recent flare up but he has continued to play hockey throughout it. We have just encouraged him to listen to his body and set the bar - GI's have been in agreement too.

I actually think that regular exercise has been good for him - interestingly, his Gi symptoms often seem to abate during the activity.

Also, I think it has been important for him psychologically - keeping up with 'normal' things and continuing with the sport he loves to play even when maybe he doesn't have energy for much else, has I think, given him something else to think about and reduced depression.
01-13-2013, 12:34 PM   #12
Ands
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My ds still tired a lot of the time, despite being technically in 'remission'. At age 11 he needs a good 10 hours sleep a night otherwise does not cope with a day at school. We have had to stop any activities later than 7pm as it is all too much. Just started on 6 MP so hoping over next few months things will improve.

Socially I do feel he misses out. It is not an easy age not to be able to keep up.

Xx
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Son Joseph diagnosed July 2012 (aged 10)
Crohn's: oesophageal, ileal, oral and perianal disease
6 week exclusive modulen
8 weeks predisolone
2 weeks azathioprine - stopped after reaction
6-MP 50mg - stopped June 2014 (after 18 months)
Currently on:
Sennoside 18ml daily
Multi Vitamin
Omeprazole 10mg
Prochlorperazine 2 x 5mg
Predisolone as a mouth-wash (as and when needed)
01-13-2013, 01:17 PM   #13
jmckinley
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We are in line with everyone else. Ryan pretty much sets the tone for what he does/doesn't have the energy to do. He has found some activities like music that he loves and can enjoy whether in remission or flaring. I was absolutely blown away by his ability during marching season! Otherwise, he gets out and plays even though he does tire easier than the other teens. His bedtime is probably alot earlier than others in high school also, but he needs the sleep.

Like S mom, we encourage some exercise now that he is in remission. He is 15, so we are trying to teach him the importance of being in his best shape just in case a flare occurs.
01-13-2013, 01:58 PM   #14
S mom
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Ya, I think it's a life skill that unfortunately these kids have to learn early...
They have to know how to listen to their body and make adjustments - like going to sleep earlier, eating properly, getting exercise but knowing when to let up... that kind of stuff.
It's also an important for them to know how to move on and function to the best of their ability at the time as this is a 'lifelong' thing - learning to cope and what makes them feel better/worse is soooo important. Not things that most kids their age are thinking about...
01-13-2013, 03:15 PM   #15
jmckinley
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I know S mom. This matures our kiddos way too soon. There's a large, care-free part of childhood that Ryan has totally missed out on. It causes a gap between him and his classmates. They see his mature behavior as "he thinks he's better than us" and he sees their constantly goofing behavior as childish. Yet another way that IBD affects them outside of the physical problems.
01-13-2013, 04:48 PM   #16
Sascot
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I just go by how Andrew is feeling. I do notice he tires alot easier. However if he wants to do something then he does it and if not then I don't push it. Somtimes he manages football and all PE at school and other times I have to write a note saying he's not up to it.
01-13-2013, 06:03 PM   #17
Charleigh
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I know S mom. This matures our kiddos way too soon. There's a large, care-free part of childhood that Ryan has totally missed out on. It causes a gap between him and his classmates. They see his mature behavior as "he thinks he's better than us" and he sees their constantly goofing behavior as childish. Yet another way that IBD affects them outside of the physical problems.

I totally agree. This whole experience has caused an incredible amount of maturity in E.
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