No more hockey

[hockeymom]

Hi everyone.
My 13-year-old son was diagnosed with Crohn's in August after a bloodwork, colonoscopy, endoscopy & biopsies and MRI. He seems to have pretty mild symptoms compared to many of your brave children. We start Remicade treatment Friday. I am nervous. He just made the decision not to play hockey this year as it's his first year of checking and at 85 lbs. he and his hockey trainer agreed that the risk of getting hurt was too high. We are not your typically "hockey people." My shy little boy found hockey as a way he could be a sort of super hero where no one recognized him under his helmet. He could be 2" taller with his skates and bigger with his pads. He loves skating more than anything. Without it, I am so worried he will lose his confidence. This is much harder than I initially thought. He cries so much, out of fear of not growing, fear of the medicine, disgusted every time he has a "bad BM," missing his time on the ice.

 

[Clash]

Hopefully, when you get his CD under control his growth will catch up. A lot of kids with CD can have stunted growth or growth failure due to malabsorption at the area of inflammation. A bone scan is usually done to see where there bone age is. A lot of times their bone age will be behind their actual age allowing for a larger window to catch up in growth.

Also, a lot of the kids here supplement their nutrition with enteral nutrition. These are formulas that are more easily absorbed. Some do this with otc formulas(drinking boost) others require or opt for EN with px formulas that can be done through ng tubes over night)the kid places and removes the tube)

I'm going to tag Tesscorm as her son plays hockey and she has experience with boosting growth with supplemental EN. She should be by shortly.

It might be a good idea for your son to speak with a therapist that deals with chronically ill kids as well.

 

[baistuff]

Hockeymom,

Believe it or not, until a couple of years ago I was playing hockey myself. Have since a very young age. Crohns never got in the way nor would I let it. But as my medical practice grew, the players around me kept getting younger ( because I certainly could not be getting older ) and my kids got older I couldn't play at 6am or midnight anymore. I hope he keeps playing. It's a game that can be played at any level, is great exercise, and with all the padding, I think is a very safe sport actually (when played in my old man rec league.) Not a day goes by I don't miss it, but my kids, my patients and other priorities now have to come first.

On the pro level, Theo Fleury, who was about 5'6" played for the Calgary Flames for many years, has crohns. Maybe your son can play with younger players or a less competitive leauge. It's a great game, I hope he doesn't have to give it up.

 

[Tesscorm]

Sorry to hear your son is suffering through this. :ghug:

I really urge you to consider supplemental EN. Using it exclusively (no food, formula only), my son reached clinical remission and then he continued supplementing with EN for the next two years (actually, 3 years later, still does a bit). My son was 16 when diagnosed, before being diagnosed he went from 145 lbs to aprpox. 125lbs; once on EEN and then supplemental EN, he went to 155 in three months! (My numbers may be off a bit, it's been a while. )

I'm attaching links to Kids on EN and Kids' Success Stories - you'll find lots of info there.

As Clash has said, lots of parents here have their kids on supplemental EN and most have found it to be quite beneficial in helping growth.

In the Pediatric research section (you'll have to scroll through...), there is a link to a study that shows supplemental EN along with remicade greatly improved remicade's success.

As far as hockey, I agree with the worries with checking. Absolutely hated it, after a certain age, I think my fondest memories of my son playing were when he was on the bench or penalty box (nice and safe! :yfaint Have never understood the need for checking, hitting, etc. - anyway, didn't win me any hockey brownie points but never agreed with the hitting! But, back to your son... if he doesn't play with his regular team this year, can he play on a recreational league, with no hitting? (Here, only the competitive leagues allow hitting.) If not (or even in addition to), can you enroll him in power skating, stick handling, checking, etc. training? He will still be skating and involved in hockey and prepping for next year. You could try to have your son see this year as a 'regrouping' - a year to return to health, rebuild some weight, improve on specific skills, etc. so he doesn't feel it will be a 'wasted' hockey year.

Aside from all this, my son played competitive hockey from 9 to 17 years old. Both of his wingers, were two of the smallist players on the team - they were also two of the BEST! While 'larger' size gives some advantages, 'small' also comes with certain advantages. Another friend of his, who was also the smallist player until he reached 16-17 years old, was and is a fantastic player, usually captain of his team, and now playing semi-pro (whatever you call the minor pro leagues :blush and hoping to be picked up in the NHL. And, at every age, smallest or not, he was usually the top scorer for his teams. So, let your son know, size really isn't the ultimate factor in hockey.

Kids on EN
http://www.crohnsforum.com/showthread.php?t=36345

Success Stories
http://www.crohnsforum.com/showthread.php?t=27079

:ghug:

 

[DJW]

Hi Hockeymom and welcome.

I found it tough going playing contact hockey, not feeling well, and being 30-40 pounds lighter than everyone else. But once healthy I continued.

I hope the meds work quickly and he can resume playing.

Sending you both my support.

 

[hockeymom]

Does anyone have thoughts on Essential Oils? My mom-in-law keeps giving them to me with blogs she has found about adults with Crohn's who are med-free thanks to their oil supplements. I should say she is completely against the Remicade.

 

[DJW]

Crohn's can be very deceiving. Inflammation that is untreated or undertreated can lead to serious complications down the road. Just because someone has no symptoms doesn't mean there is no inflammation. Medication is the best way to clinical maintain remission.

Careful with the internet. There are a lot of sites that promise miraculous cures. There is no cure at the moment. All they do is take advantage of desperate people to get their money.

I just started Remicade. I'm noticing improvement after 2 infusions. I really wish it was available when I was first diagnosed.

 

[JenniferJuniper]

@hockeymom, my 13 yr old son was just diagnosed in July and took this season off from football (which was devastating for him). He has had 2 infusions and drinks 4-5 shakes a day + his normal food and has gained almost 9 lbs since diagnosis. He is stronger and getting bigger and is signing back up for wrestling again this season after thinking sports were over for him. Hang in there, he might get back to hockey!

 

[syzygy]

I picked up hockey as an adult and just love the game. I'm sure it's hard at his age to feel like he's getting derailed from the competitive track. Rec hockey is on the rise and I'll bet there are options in MN for no-check rec leagues. Best of luck!

 

[my little penguin]

Come join us in the parents section
http://www.crohnsforum.com/forumdisplay.php?f=49

 

[Tesscorm]

I don't know anything really about essential oils but I would be very careful if you are considering using them as a replacement for meds. As was said above, crohns can be deceiving and ongoing simmering inflammation will usually result in serious complications.

When my son was on supplemental EN only as a treatment, for almost two years, he did very well - virtually no symptoms, finished high school, ate whatever he liked, played hockey on two teams, etc. If he hadn't already had a diagnosis, there would have been no indication that he was sick. However, MREs continued to show 20-30 cm of inflammation that would not go away. :ymad: Eventually we moved onto remicade. And, no question, very hard to make that decision when all looks and feels good.

Un- or undertreated crohns can lead to a number of complications, including surgery. Remicade is supposed to be the 'best' and, when I questioned my son's GI why we were going straight from EN (probably considered bottom of the rung in treatment) directly to a biologic (top of the ladder!) in one step, his answer was 'Why not use the best treatment available now? What's the point of using something that may not work and then find the best can no longer help because of the resulting consequences?' Middle of the pack would be the immunosuppressants but, in my mind, the risks were so similar that there really wasn't a reason to go with an immunosuppressant and decline remicade.

Infusions are easy and my son really doesn't mind them. The biggest issue will probably depend on how your son deals with having needles/IVs but, if he's okay with them, the rest is easy. Seems most kids don't mind it... they play video games, watch a movie, sleep, etc.

I'm sure your mother-in-law means well but you do need to be careful to not undertreat. There is a place for supplements, however, because meds can stop working after a while, etc. so if healthy supplements can boost the meds effectiveness/success, no harm in that. My son takes krill oil (a type of fish oil) and vitamin D. He also continues with a bit of supplemental EN by drinking 1-2 Boost shakes each day. So far, knock on wood, he's done well. But there are lots of other supplements that others have done well with - depending on where his crohns is located, it may be worth having vitamin levels checked to see if any specific supplements could be beneficial.

And, please do visit the Parents' subforum - lots of other parents with children your son's age.

:ghug:

 

[Jmrogers4]

Welcome Hockeymom,
My son is now 15 diagnosed at 10 and for us it was football instead of hockey. He still joined the team last year as a freshman but never actually played in a game (much to my relief) He was dealing with a bad flare and EEN during the season added to the fact that he was 89 pounds and 5'. When he started practice and the other boys could pick him up over their shoulder and carry him down the field we figured football was done.
While he is still not football size we started remicade in January and the growth has really taken off (after many years of other meds, trying every diet out there). Remicade and EN have been the only things that have helped. He is now about 5'5" and 112 pounds, since starting remicade.
We've used essential oils (not ingested ones) for joint pains and other minor things. All the time we were trying other things to stay off the "big" meds he had simmering inflammation which affected his growth so now we are trying to play catch up. Keep us posted and as everyone has said feel free to visit us in the Parents section as well.

 

[hockeymom]

@JenniferJuniper - what kind of shakes is he drinking?