Moving on from EN to remicade
Reading about so many new members’ children being diagnosed lately prompted me to read through our children's Success Stories. But, it seems that after Dusty's initial post, this thread has been forgotten!
As Dusty expressed in her opening post, it is so scary to find yourself here! When Stephen was diagnosed, it would have been so comforting to read of success stories of other kids. At diagnosis, the fears of the unknown were overwhelming; I imagined the worst! In an instant, my most basic assumption, that my kids would be healthy, disappeared. I’m not sure I can express my feelings as well as Dusty always does
, but I felt disconnected, in a fog and, all the while, being informed of tests and results, medications and risks and expected to make decisions that will affect our child's life! :ywow: But, it does get better and an altered but normal family life does return. There’s a bit more uncertainty, a bit more worry but Stephen is back to playing hockey and tormenting me with hockey hits, to staying out too late, to watching movies together, to arguing about chores, to planning family vacations! :ysmile:
Stephen was diagnosed when he was 16 years old. It already seemed a bit unreal that my son was being admitted to the hospital because, whatever he had, our regular Ped couldn't find the cause. However, to a degree, I was relieved - now they would find the problem and correct it (permanently). Never did we expect to be told that they found the problem but couldn't fix it.
Stephen’s most obvious symptoms had been recurring fever accompanied by diarrhea, back and forth for two months. Lots of tests had been run - blood, barium x-ray, stool samples, ultrasound and, while there were indications that something was wrong, there was nothing definitive. Meanwhile, he was lethargic, little appetite and lost almost 20 pounds. On May 16/11, we took him to Toronto’s children’s hospital and he was tentatively diagnosed within a few hours. After a colonoscopy, doctors confirmed Crohn’s (in his TI and in some areas of his small intestine, duodenum and colon). He was given two options – enteral nutrition or steroids. His IBD clinic is a strong supporter of EN and very strongly encouraged Stephen to attempt the EN.
He was in the hospital for a week on IV-Flagyl, during the last two days he began EN and was taught to insert/remove the NG tube. He did six weeks of EN with no food (clear fluids only). He learned the insertion/removal of the tube fairly easily. Prior to his diagnosis, he was the typical teenage boy – sleeping late, starting homework Sunday night!, forgetting his lunches and chores but always with a smile and a whistle:whistleinnocently: – as long as we got him to hockey, life was good! Somewhere he found the maturity and determination to go six weeks with no food and barely a complaint! He talked to all his friends about his Crohns and often inserted the NG tube with an ‘audience’. There are so many posts of parents sharing their surprise and pride at the strength and resilience of our children – we sometimes don’t realize how awesome they are!:medal1:
His symptoms disappeared almost immediately and back at school the following week. At the time, he was in two Phys. Ed. Classes (2+ hours per day) and on two hockey teams. He started PE at a lower pace for a couple of weeks, added back one team and then the other within the six weeks. Gained 10+ pounds over this time and then reintroduced all foods over the next three weeks. Once he was again eating all foods, he gained almost another 20 pounds and grew ½ inch.
His maintenance has continued to be EN at half the dose, 5 nights per week. Other than eliminating seeds, nuts, popcorn and veggie/fruit skins, he is eating all other foods (I know he’s even had the odd beer, unbelievably with his GI’s approval! …ugghh, another story! :lol: Then again, his GI’s an Aussie! Sorry Dusty!:ytongue
.
So, for the most part, other than his nightly NG feed, Stephen is back to his old life – forgetting lunches and chores, his most important issues being the next hockey game or Call of Duty war :tank:! We’ve had some bumps, some minor symptoms but all quickly resolved (although my worry-metre went off the scale each time!). His diagnosis has not slowed him down one bit - since his diagnosis, he’s had his best year of hockey (also his worst with a mild shoulder separation, injured knee and a suspension!), he got his drivers’ licenses (what’s one more worry for mom?!
), continued to teach himself guitar and entered a talent competition, applied to universities and will be graduating in June.
Crohn’s is still always on my mind and I’m always learning of something new to worry about in the future (it’s like I need to stockpile my worries in case I actually have a worry-free day!:duh
but I’ve accepted that this will never go away. I’ve always fixed what’s wrong in my children’s lives; it’s not easy accepting that I can’t fix this… and I’m not finished trying yet!
I don’t know if he’s in ‘remission’ as he still has lingering inflammation and I don’t know how long EN will continue to be his only treatment. But, things have not spiraled out of control as I’d feared and compared to how Stephen looked and felt and my emotions at diagnosis, this is a success story! :dog:
I also couldn't have made it through those dark, scary days at the beginning without everyone here! You have very often become the people I first turn to when I'm, once again, worried and scared! :ghug: Thanks :rosette1:
Update 2/28/13 - A short update... all of the above still applies, Stephen is doing well with only sporadic signs of Crohns, however, following his transfer to an adult GI when he turned 18, his new GI feels that remicade is needed. Stephen's crohns did not worsen over the year and a half, however, once EN induced (clinical) remission, it seems that while EN kept his crohns 'under control' it did not eliminate all inflammation. MREs showed that 20-30 cm of inflammation continued to be present in his TI. He had his first remicade infustion on Feb. 27/13 - hopefully, treatment with remicade will eliminate all the inflammation!!
Update 1/24/14 - S continues to do well! :dusty: He continues with remicade (was moved to every six weeks - no symptoms but testing showed no remicade left at 8 week intervals) and has had no problems with the remicade and no symptoms. He's gone away to school
, so I only see him every few weeks
, but he looks good! He loves school, likes his roommates, is learning to cook and clean and do laundry!! :lol: And he's still playing hockey! He had a couple of mishaps, first separated one shoulder and then a dislocated the other but, neither affected his crohns and neither did the remicade affect his recovery. He stopped supplementing nightly through the NG tube but now continues with 1 to 2 Boost shakes per day. So far, so good!
Update 3/26/15 - All continues well and results from most recent scope show 'no active disease' and 'complete mucosal healing'. While S has been one of the lucky ones who has not suffered greatly from symptoms, it has taken almost four years to completely eliminate the inflammation! It seems remicade has done its job! He's now been on remicade for two years (how quickly time flies! :ack
and, knock on wood, so far he's not shown any side effects nor any lessening of its efficacy. Since being on remicade, he had a roommate who had to leave school due to mono
(S did not get sick), had a bout of strep last year, the flu this year and possibly molloscum but, so far, it doesn't seem that remicade has led to a greater number of illnesses nor affected his ability to recover. :thumright: Aside from crohns, he's almost done his second year of school, still plays hockey, is planning a vacation with roommates and has a summer job lined up! Hoping, praying I'll be back next year with a similar update!
Update 6/18/18 - It's been quite a while since I updated S's story. And, as he's certainly no longer a kid, I thought I would update with a closing update to his 'kid's' story. He had his graduation ceremony from university last week (very proud mama here! ::rosette2
(he actually finished school in December though). He's working, still playing hockey and computer war games :facepalm: and doing all the things he should be doing (and, maybe some he shouldn't! :lol
Crohns-wise, he continues in remission. He has been one of the lucky ones who has responded to treatment and has had no long lasting or serious issues since dx (knock on wood, throwing salt over my shoulder, and whatever else I need to not jinx this!!). While it's been 8 years
eek
since his dx, and my daily worries re crohns are next to nothing, periodically, I do still worry about when the next shoe will drop. I'm grateful it didn't happen through university or when he was starting work but, the reality is that it will never be a good time to happen. :frown: But, for new parents, know that things will settle and, as I said in my first post, the news and your fears will bring the worst to mind but, it doesn't have to happen that way. It may take time to find the right treatment but things will settle and your fears will lessen. S has been lucky (and I never forget this!) and he was able to continue on since dx with only a few adjustments to his lifestyle. He has scopes scheduled for November but I'm expecting/hoping that all will be good. Again, for new parents, know that you've found a great place to meet and share your worries. The other parents here will give you strength and knowledge to deal with your emotions and be the best advocate you can be for your child! :ghug:
Update Nov. 13/18: S had scopes last week and all good. No inflammation seen! This scope was booked almost a year ago as a follow-up but I was relieved that he had it scheduled now! I'm always soooo worried when infusions are delayed and the last two infusions have had to be delayed by over a week due to the jaw surgery/infections that he's had! So it was timely that the scopes were done now! Made me even more relieved to hear that all was good.
