Determining remission

[PatriotMom]

My son, currently age 15, was diagnosed with Crohn's last summer (primarily small intestine & terminal ileum affected). He was asymptomatic, but did experience growth failure, and had abnormal labs. He was put on prednisone (which we tapered) and Remicade, and now 16 months later is still doing well with the Remicade. He has grown almost 5 inches and gained 25 pounds. He currently is about the 10% for both height & weight; until about age 10 he was close to 50th%, and at diagnosis he was 3%. So since Remicade he has been increasing faster than the curve, but still probably isn't where he should be (mid parental height calculation projects him reaching 5'8"). But I know it will take time. Last year his bone age was about 2 years behind, and we met with an endocrinologist who thought that if the Crohn's was under control, he should be fine in regards to growth / catch up growth.


Generally he seems like he is doing well. But just wanted to know if there's a point when follow up imaging / testing is done to confirm remission and make sure everything inside him has healed. I want to make sure he reaches his full growth potential, but on the other hand I don't want to subject him to another MRE or colonoscopy unless necessary. So far his GI has not brought up any repeat testing to confirm remission, but I was just wondering if there's a time frame when it should be done.

 

[Willowcat05]

Hi I don't know where you are from but here in Scotland my son had a scope after one year of being on remicade to see if had healed him which it had to some extent but still not in full remission.

 

[Farmwife]

The standard for my child is every year until remission is reached and then every 3 until adulthood.
However, that changes If disease is active or to check if things have changed (disease spreads or going from UC to crohns).

 

[Tesscorm]

I can't say for sure when my son was considered to be in full remission (a few months after starting remi??) but, since dx (almost 6 years), he's averaged an MRE or scope most years (has sometimes been 18 mos). They were more frequent at the beginning (ie both scope and MRE within weeks/months) and when he moved from ped to adult GI but, even since being at adult GI (almost 5 years), he's alternated between MRE and scope almost yearly.

But, I got the impression that now, he may stretch out the image testing... at our last apptmt, GI stretched out follow-up apptmts (we were going every six months, next one is 12 months)...

 

[PatriotMom]

Thank you for the replies! We live in the U.S. I've been debating about bringing this up his last couple of appointments, but have chickened out! I've been thinking his gi would bring it up, because initially he said we'd repeat the testing at 1 year. But since his weight & height have been great, his gi has been pleased (as have I), and has not said anything else other than we'll just keep on with the Remicade. On one hand I'm fine with that and would like to just keep believing that , but on the other I'd like to know for sure that the Remicade is working as intended, and nothing is holding him back from reaching his full growth potential (I just wish there were easier tests to find that out). I guess since he has been asymptomatic, and I feel like were kind of blindsided with the diagnosis, it's hard for me to not have a little bit of doubt yet. I think I'm kind of hesitant to bring it up at his appts because I don't want to be responsible for initiating the testing....on one hand I could see his gi saying that that's a good idea to go ahead & do that, but on the other I could also see him looking at me like I'm half crazy and why put him through the testing again when he seems to be doing so well. So was just looking for opinions on when it's typically done or not

 

[Tesscorm]

I bring up testing often. I don't know that this has been a factor in the frequency but, I keep copies of all scope and MRE results (and periodic lab results), and after a time period, do ask about follow-up testing. When the GI has disagreed with me (ie when I once asked about running an FC test), I explained why I thought it might be necessary and GI explained why he believed it wasn't. I've also asked him to add certain tests to his labs, ie vit D levels and I think some others over the years. At his last apptmt, I was the one who brought up an MRE as it had been two years since his last one (scopes do not show the small intestine). GI agreed it was a good idea.

There's a lot of knowledge and experience here on the forum. It's been integral in teaching me about this disease and what to watch for, what to ask for, etc. I don't hesitate to speak to my son's GI about any questions. Early on (when dx was still fairly new), I'd have a whole list of questions, take two copies (one for me and one for GI :lol. Early in the apptmt, I'd let him know I had questions/concerns and thought it was easier if I just gave him my list. :ack: He has always been patient in answering questions, even when I've disagreed with his answer and questioned further until I was satisfied with the answer (and then I'd still run it by the 'committee' here! :rof.

I was never rude or pushy but I was probably a bit more 'high maintenance' than some others; the way I see it, GI has hundreds/thousands of patients to watch over, I have only one! I'm going to make sure nothing is overlooked.

Also, I have found errors in test results, etc. I completely trust my son's GI and his clinic but human error occurs... results have been lost (and test wasn't in system, so no one knew they were lost until I requested my copy), requisition orders not sent to infusion centre, etc. I'm not trying to scare you but, I do believe you need to be on top of things. Once he's in remission, for a while, you can probably relax a bit... which is what I've done (and only request lab results periodically).

Once in a while you run across a dr that doesn't like to be 'questioned' but I think most, especially peds, understand a parent's concern.

 

[Maya142]

Fecal Calprotectin might be a good way to start. It's non-invasive (just a stool test) and should let you know if there is inflammation.

But it is a good idea to ask about testing and figure out what your GI does. You do want to stay on top of it because kids can have inflammation and be asymptomatic (as you learned!). You really don't want silent damage to occur. And especially considering he has had growth issues and is 15, you want to act quickly if there is still inflammation.

Our GI does scopes every year or two (if the kiddo is doing well). We do small bowel imaging whenever we do scopes or as needed.

I think it's fine to extend scopes and MREs once you have proof your kiddo is in remission (and by proof, I mean a clear scope and MRE), but until you reach there, testing more frequently is a good idea.

 

[crohnsinct]

if lack of growth and weight gain were his main symptom, it sounds like your son is in pretty decent remission. For both if my girls they gained a little and grew a little in the first year but weight comes first then growth. After about a year they both really took off. The kids really can't grow with inflammation so I would think he is doing pretty well.

i felt the exact way you do. Doc said at one year but didn't mention it. Then kept saying maybe in 6 months etc. three years later she had her first follow up scope.

My younger daughter was like your son with few symptoms so it was harder to be sure of remission but she also was not gaining ir growing at a decent rate. She had follow up scope at one year.

I agree with maya. Fecal calprotectin is an excellent and easy test to see if there is inflammation lingering. It was raised fc that lead my younger to follow up scopes. Quite a few kids on here have normal blood labs but still have inflammation but there are far fewer who have normal fc and still have inflammation so a lot of the ped gi's are using that test more often.

 

[Jmrogers4]

You have been given lots of good advice. He sounds very similar to my son who began remicade at 14 1/2, he is now 17 1/2 and has been in remission since then. We will do follow up MRE at some point between now and August as it will be 3 years in December since last MRE (small bowel and TI) as that is standard procedure for his GI's office for kids in remission (every 3 years).
My son is asymptomatic as well and blood work (even when flaring) is in the normal range. We do follow up with FC, in fact we just did one last week but have not gotten the results back.
My son was 2 years behind at start of remicade and was also off the chart on growth velocity after about 6 months on remicade. He was expected to be about 5'8" - 5'9" according to endocrinologist but he is just a hair over 6' now and still growing. He was at 75% prior to crohn's for height and had fallen to I think it was 10-11% for height just prior to starting remicade (he was 5'1" at the start of remicade), he is now back up towards the 75%. Growth has slowed but in the 3 months between the last GI appts he grew 1/2".
He is still really thin but he was at 1% for weight when we started remicade and is about 35% now.
We spent 4 years prior to starting remicade with lack of growth and weight gain and assuming he was in remission, now that he is in remission I can tell the difference just in the way he looks, his energy and his appetite. I think when it blindsides you thinking all is okay you with diagnosis, me with thinking he was in remission but really wasn't that you just keep thinking it's not real and that tomorrow you will be blindsided again but I think we're more vigilant than we were and always on the look out for something that indicates all is not right.
We do FC about once a year and it gives me a little peace of mind that I can hopefully catch a flare before it wrecks havoc.