Are your kids physicaly active?

[UKmum]

My son is 13, he is currently low in iron which we are hoping to get infusion (call with nurse this afternoon) but even when his bloods and stool tests are normal .. he is incredibly lazy.

He gave up football which was a shame as he was very good. He says he just doesn't enjoy it.

He doesn't socialise with mates outside of school. Hasn't found his pack.

I keep making excuses for him when my husband says he is lazy but there are athletes with IBD.

Are your kids sporty and has IBD prevented them from anything?

I have wrapped my son in cotton wool and I think I've made things worse as he is so lazy but he just says 'I can't be bothered'

He loves gaming .... a little too much so might be that but wanted to ask other parents.

Thanks so much

 

[UKmum]

PS he has UC

 

[my little penguin]

My kiddo was dx at 7 with crohns
He was swimming competitively from age 6 on.
He was dx with juvenile arthritis at age 10 as well.
Additionally, He was dx with auto inflammatory disease around 11-12 .
He stopped swimming competitively around 11-12 .
Swim team is in the pool by 5 am in high school so no one wanted that .
But still swam daily at the gym or our pool .

no more pool at our new house so elliptical and rowing machine a few days a weeks .
Plus weights/bands etc…
But BIG BUT
His rheumatologist insists Ds move /exercise to keep his joints healthy .
So doctors orders

He plays cello since age 9 and practically daily for his fingers
He was also put in PHysical therapy by his rheumatologist at one point to make sure he knew how to exercise the right way around 15.

he also games a lot as well
But his friends are on their charting up a storm .

some kids hate sports especially as teens when the level of competition goes through the roof

even without crohns I would not have expected competitive sports in our house in high school .
It’s not lazy it’s just what you enjoy as a person .
Some kids do some don’t
Just like some excel at math or science vs others enjoy English or working with their hands.


Since his crohns is not in remission. Anemia means he is still actively inflamed/bleeding even if your not seeing it .
You need to get to remission first for a long time to feel good to exercise.

 

[UKmum]

Thanks

I have the nurse calling me for a check up in a couple of hours, she has his calprotectine results so will have to see what she says. I'm terrified of what she is going to say if I'm honest..

 

[Pilgrim]

I have two children with Crohn's, a boy your son's age and a daughter who is 11. My son loves sport. Not competitive sport but is motivated by spending time with friends. Lately he started an outdoor job. That keeps him moving AND he is making money - the money is motivating. Also loves gaming- maybe that's ubiquitous.

My daughter avoids sports but knows she has to exercise to stay healthy. We got a puppy this year and now that it's older she walks the pup an hour a day in two sessions. She does things with friends...but says no to biking, sport camps, and while she does sleepovers occasionally her friends know she will be in bed by 9 with a sleep mask on.

I guess the key is to figure out what will motivate him to get that needed amount of movement. But also remember that anemia is energy sapping beyond belief. I'd give him some patient encouragement until that is resolved.

 

[UKmum]

Thanks all

I've just spoken to his nurse and she said they are happy with his bloods (apart from
Thyroid which is another story) he isn't actually anemic as checked hermaglobin was ok - ferratin slightly outside normal. All other markers for IBD normal.

Fecal cal was around 200 so it's raised but she said with IBD patients that is ok.

For reference at diognosed it was 2000. The last one was 26.

So for him it is raised.

She said review again on 6 months.

 

[my little penguin]

He is inflamed
200 is Not normal
Not a high flare requiring hospital but still inflamed
Grrrr
Ferritin is like your food pantry for iron
It gets low when your body is losing iron typically due to blood loss
Anemia typically isn’t until the pantry is completely empty or close too it
If they are not changing anything it will keep happening

hate they are sitting and letting your child stay in yuck land

my kiddos fecal cal has been below 15 for years except when he was flaring or they messed with his med frequency
So it’s not something that has to be of your have crohns /UC
Simmering inflammation is not good

assume they don’t plan on changing anything since he isn’t critical
But probably feels wretched

ds has to have blood taken every 3 months always to stay on top of things
Never 6 months
Add in visits with the actual Gi need to be every 2-3 months when they are not clearly in remission
Every 6 months if it’s been solid remission for a few years

 

[UKmum]

I don't really know what i am to do because everything I have read tells me that that number is showing inflammation

But the consultants have seen his bloods/ FC etc and said no action

This is london hospital supposedly with a very good IBD team so how can I argue with them?

 

[Pilgrim]

Remember that some are writing advice from an American system. We are in the Canadian system and you are in the UK. My kids are not in remission and we have visits or telehealth every 6 months with various labs done quarterly. FCAL can fluctuate as well even a bit day to day or depending on which bowel movement of the day. In our experience 200 is OK but I would watch the next fcal for a trend. You may be able to ask for a repeat test in 3 months?

 

[UKmum]

Thanks Pilgrim and very good point.

Interestingly I've just seen a post elsewhere from a U.K. mum whose son has calprotectin of 3000 on biologics etc but feels great, no symptoms or low iron, growing etc so consultants are keeping an eye

 

[crohnsinct]

My two Crohn's girls are VERY sporty. Super competitive, more than one varsity sport, active is many clubs, one playing NCAA softball. My non Crohn's kid swam on high school team and casually swam on her USA Club swim team but did the minimum required to stay on the team. Dropped all athletic pursuits in her last semester senior year. Different kids have different interests but Crohn's doesn't have to stop you from anything you are interested in. I hear the "lazy" complaint from parents of boys all the time. Our generation just doesn't get the sitting in front of a gaming console for hours at a time but the kids love it. I dare say there are university teams for gaming now so it could be a very lucrative hobby

As for anemia, yeah he probably isn't bad enough to be technically classified as anemic because that is when hemoglobin or hematocrit drop but often by that point it is usually pretty bad. A lot of docs here in the US will look at ferritin/iron stores and treat according to that.

If your son has UC that would explain the lack of a brow raise on a calpro of 200. Colonic disease will usually raise calpro dramatically. Small bowel disease doesn't generally get as high as colonic disease. So for a kid with small bowel disease a 200 gets a brow raise and a follow up test in a month or so. As Pilgrim pointed out the calpro test has a pretty high degree of variability so a 200 isn't a freak out point and most docs wouldn't change therapy based on that when symptoms and other labs look good. They also might not wait a full 6 months. That seems a little long to me. But given he has colonic disease a 200 is actually pretty good and I would trust the docs and their staff. Colonic disease also has much more variability than small bowel. So whiles last test was in the 20's and this one was 200, you could actually be looking at the same exact disease level. I would be much more concerned if the last test was 20's and this one was 500-600.

I hope this makes sense. It's been a long day and I might be rambling.

 

[UKmum]

Thanks so much for the insightful post it really helps me to get advice from all of you on the board more experienced than myself...

I'm glad to see that IBD shouldnt and won't stop athletic kids

I think he is going through a typical teenage 'life is so unfair' 'I can't be bothered' phase that I am trying to get him out of as it's hard work

 

[Maya142]

My girls were very active in middle and high school. My younger daughter has Crohn's (which is in the mild to moderate range, according to her GI) and severe juvenile arthritis. My older daughter has moderate juvenile arthritis but not Crohn's. Both girls played a lot of soccer in middle school and high school.

My younger daughter did struggle when she was diagnosed with Crohn's and her meds hadn't kicked in, but rather than stopping soccer, she started playing in a recreational league, where she only had practices twice a week and one game a week. She was also anemic at the time. The year before, she had played on Varsity (which was 2.5 hours of practice 6 days a week and at least one game, which was 2-2.5 hours plus travel time), despite struggling with fatigue (she struggled with Crohn's symptoms for quite a while before she was diagnosed and even needed iron infusions because her ferritin dropped to 3). Her arthritis was in a huge flare when she went to recreational soccer and even though she was sad at not being able to play on Varsity, she said it was better than stopping the sport. She also started learning how to play tennis and got into journalism and became an editor for the school paper in high school and started writing for many different publications, including our local newspaper. She also started swimming regularly in high school. She still does that - she swims 3-5 days a week and plays tennis twice a week, despite having low iron right now and active arthritis (her IBD is well controlled though). Not for long because of her fatigue- just 25 or 30 minutes or so, but she does do it regularly.

My older daughter played soccer in middle and high school (JV 1 year and Varsity 3 years) plus in a recreational league, and continued with club soccer in college. She's now in grad school and playing in a rec league. She also swims or goes to the gym several times a week.

It did help that their pediatric rheumatologists always emphasized the importance of exercise - said it would help them remain flexible and have strong muscles, which are needed to support inflamed joints and would help with pain.

Crohn's shouldn't have to stop your son from doing anything. I wouldn't say that he's lazy though - he may not like competitive sports. But it is important to get in some exercise and not play computer games all day. But that could be anything - it could be kicking around a soccer ball by himself, walking the dog, going for a bike ride, going to the gym etc. It doesn't have to be competitive sports. Are there any after school clubs he could join? Would he be interested in trying a new sport, just for fun? My younger daughter thought it was too late to start something new in high school, but she tried tennis and writing for the school paper anyway and wound up loving both things. I would not push too hard while his iron is low and his FCP is not normal though - he may just feel exhausted.

 

[Delta_hippo]

The only thing I wondered about reading your original post is whether it is worth asking him if he is a little depressed? IBD is a hard diagnosis for anyone let alone a kid and losing interest in hobbies/ friends could be a kind of depressed/ why bother rather than too tired/ anaemic or simply lazy. Just thought maybe worth ruling out.

 

[polly13]

My son is 13, he is currently low in iron which we are hoping to get infusion (call with nurse this afternoon) but even when his bloods and stool tests are normal .. he is incredibly lazy.

He gave up football which was a shame as he was very good. He says he just doesn't enjoy it.

He doesn't socialise with mates outside of school. Hasn't found his pack.

I keep making excuses for him when my husband says he is lazy but there are athletes with IBD.

Are your kids sporty and has IBD prevented them from anything?

I have wrapped my son in cotton wool and I think I've made things worse as he is so lazy but he just says 'I can't be bothered'

He loves gaming .... a little too much so might be that but wanted to ask other parents.

Thanks so much

Hi Lucy is 13 too and definitely there are times when she physically hasn’t been able to participate in sports which has ultimately led to her stopping them, but she is active goes for a walk, works out at home etc.
maybe team sports like football are not for him he might be happier to take up something like taekwando or something that he is only competing with himself. My ds isn’t a natural footballer but loves taekwando

 

[UKmum]

he is a little down but that is because he isn't having the best time at school. That's another story.

He is quite unaware of his 'condition' he doesn't even know what it's called, he has no need to worry about it yet and just has 6 monthly checks as symptom free.

Lately he has told me that he has just gone off football - he is a natural footballer so I guess I felt a bit sad.

I spoke to the school and he is top set for PE which has made me feel better and break times they tell me he is on the Astro turf playing football or basketball so in conclusion I guess he just doesn't want the commitment.

 

[my little penguin]

@UKmum
If he is 13 he needs to know what his condition is
What it can cause
What medicine is given for it etc…
He needs to be part of the process since this is happening to him
He isn’t a bystander
Teen years are tough enough
Being kept in the dark and springing it in him later typically doesn’t not go well

even at age 7 the Gi was very clear about explaining what was going on directly to Ds
There are coloring books /story books for little kids
Comic books for pre teens
https://www.crohnscolitisfoundation.../assets/pdfs/pete-learns-all-about-crohns.pdfPlease share it with your child
Gi office should have a medical coping psychologist who can help them learn to deal with there feelings
You need to let him know you are giving him iron supplements as well
Soon he will be in charge of his own medical decisions and meds
He needs to learn now while he is still willing to listen
Older teens tend to tube parents out later
Especially if they feel misled(ie gi /you didn’t tell him what he has and help him learn about it )

 

[my little penguin]

https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/ibd-me-ac.pdfFor younger kids

 

[my little penguin]

https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/teenguide.pdf

 

[my little penguin]

https://www.improvecarenow.org/toolkits_and_guidesToolkits for ibd patients

 

[UKmum]

The thing is we are only having 6 month phone calls currently.. he knows the basics of his condition. Medicine hasn't changed. As things progress I of course will absolutely be explaining the why's. But for now he is just leading a normal life. No blood, normal
Stools, he knkws the importance of telling if there is change in thst department.

I haven't told him about the iron in his drink, as soon as I telll any of my kids I've put a bit of spinach into a smoothly they won't drink it! And I want them to drink it.

Those links are good references to have so thank you

 

[Maya142]

I would also talk to him about his condition. It could be impacting his mood. Kids also worry when they don't know the facts. For example, my younger daughter was first referred to a pediatric GI when she was 12. That GI told her she would have to have a colonoscopy if she lost any weight. She did tell my daughter she would be under anesthesia for the procedure and they would do biopsies, but didn't explain further. M was very shy and didn't ask questions and I didn't think to ask her if she understood what the doctor was saying and why. When she was 16-17 and had started seeing a psychologist who specialized in kids with chronic illnesses, I learned that for years she had thought the weight loss was her fault and that a colonoscopy would hurt, even though she knew she'd be asleep - she still thought she would be able to feel pain.

So understandably, she was terrified if she lost weight because she thought she would then be sent for a painful procedure. I wish I had known and had been able to reassure her. After that, I (and her psychologist) encouraged her to speak to her doctors and ask questions and over time she became more confident and learned to speak up when she didn't understand something or was nervous about something.

Even if he is feeling good now, he does have a chronic illness that he will have to manage (with your help, of course!) as he grows. I don't know if this is the case with your hospital, but in the past, other parents from the UK have said their kids have had to transition to pediatric care to adult care at 16. In the US, most pediatric GIs keep kids till 22 or even 24, but they encourage teens to start taking charge of their healthcare quite young. My daughter started doing her own injections at 13. She knew all the names of her medications and supplements by then and why she was taking them. She knew which specialists she saw, how frequently and why. All of that really helped as she grew up and had to switch to adult specialists, and it also helped her come to terms with living with multiple chronic illnesses.