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[emie416]

So my son came home from school with horrendous smelling wind! I told him to go try on the toilet. He went but could only pass a small red flake. Not blood I don't think , just red coloured.

Leading up to bedtime he kept going backwards and forwards to the toilet but again only passing very , very tiny redish flakes.

In the end I made him sit and just give his body time. He sat for a full hour and it helped ,he just kept going and going. He ended up with a very sore bum , bless him but I am glad we had made him just sit and basically 'relax' to let his body go.

What could the red flakes be? It was red on the paper too, but not typical blood coloured . He hasn't eaten anything red that I know of :/ . Is there anything that could have caused this? He has never suffered with constipation before either. :frown:

 

[my little penguin]

Red flakes would be blood mixed in the stool or blood on the surface of the stool
Any "red" dark light marooned or otherwise is considered blood
Please let the GI know
Especially the foul smelling gas
The combo can mean different things


Sorry he is having a rough time

 

[Farmwife]

Agreed. You can take a picture and call the gi.
They'll be able to help.

 

[emie416]

Is it really?! Wow, I don't really have much experience with blood in the stool , so just presumed it was a red stool. It was very strong smelling, but Tyler's often are! So nothing unusual about that. His wind certainly was awful!

He sat for half hour this morning , passing larger flakes but not red, more of orange so a bit better! He went to school ok and not heard anything from school so must be ok!

I am waiting on a copy of his results from his first ever scope with initial findings. I do however, have a copy of his results from 2015 ( a year later) It states patchy non specific active colitis ,apthoid ulcers, eosinophils << what even is that?? , and patchy active gastritis. He had no granuloma in 2015, that was found in 2014,a year of treatment must have sorted that one!

Anything stand out with that? :shifty-t:

Thank you

 

[emie416]

Results!!

Frustratingly results are still normal at 62. But surely the rising trend indicates something?! March 35, May, 42 and now 62!

He has so many old symptoms returning

 

[emie416]

Really hoping someone will be able to give me some hope that I am not going crazy.
His IBD nurse said she will log it in his records, but I still feel really uncomfortable that nothing is happening to put him back on meds etc :/

 

[Optimistic]

What results are these? FCP?

 

[emie416]

Yes, he never use to use this method at time of diagnosis. So this was new to us . The numbers are well within limits but slowly rising with symptoms

 

[Maya142]

Do they have an explanation for his symptoms, if they don't think it's inflammation?

Fecal Calprotectin is generally accurate, but of course, there are always outliers. If he is continuing to have symptoms, I'd push for other investigations - scopes etc.

For what it's worth, some kids just have lower FCs than others. Our GI watches the trend. My daughter's FC has been 250-480 when she's flaring. For Crohn's standards, that is elevated but it can go much higher - 1000+. So her GI just looks at the trend for her.

Hers will also go very low - below 50 is considered normal based on our lab. Hers has gone as low as 26 when she was in remission. We know what the numbers mean for HER, but it can vary for each kid.

Since it's a new test for you and you don't know what his was when he was DEFINITELY flaring, I'd ask for other tests if he continues to have symptoms.

 

[Optimistic]

My son has this test every few months. We have always been told that levels are either normal or not and as long as they are normal not to worry. We've also been told that a non IBD person could take this test at different times and their levels would vary also within normal range.

In the US there are several labs that run this test. One has normal I think under 50 and another under 125.

The one thing I don't quite understand is how often there are false negatives which is my worry for my son and the reason he has frequent scopes. I've seen the studies but some of the leading pediatric IBD specialists in US put different values in this test. He was in ICU and had only 250 FCP which makes me wonder. I've heard stories from very sick people who never had a high FCP, but the current DATA shows it is a good option for tracking disease status.

The big thing you have here is a child whose symptoms are worsening! I'm sorry. I get why you are upset with no plans, no meds or treatment!

 

[Maya142]

I think false negatives are pretty rare -- it's generally considered a very accurate test.

But on the other hand, if I had kid with lots of symptoms and no medications, I would worry too and want more definite answers.

 

[emie416]

He never use to show on any tests until they scoped. That is why I was questioning it.
Back in March when he had the first study done, he had no symptoms what so ever. The consultant had suggested doing this to see if we could determine remission.

Obviously with those number of 35 we were all happy with that! He came off all meds and that was that. (I thought that was ok to do so) However, a month in he began with slight left sided pain ( what he use to get) , nothing major but I thought i'd best mention it at the time.

They ordered another test to be done, they were at 42, so again nothing to worry about and to just watch him. By his birthday in May, he was really starting to complain more and more of this left sided pain, he would double up at times too. He then started with urgency to go and more frequent trips. Old habits really were returning.

Again I phoned to let his gi team know, and again they did another test ( this bringsus up to now) The stool I handed in was exactly the same type of stools he had back when he was diagnosed. I was convinced that surely this will show something now! But also at the back of mind worrying that like history repeating itself , all tests would show normal!

Surprise his numbers came back as 62, anything under 166 is normal over here! This is when I started to ask and cling onto the fact that his numbers are rising and symptoms have returned , so surely his consultant would take that into consideration. It took two years of fighting to actually get him diagnosed , I can not fight again to prove things aren't right again

 

[CarolinAlaska]

I think it is crazy that they took him off his meds when they had things under control and won't put him back on them when he gets sick again. WTH? By the way, is your son taking cefdinir, an antibiotic, when he had red/orange stools? That can discolor the stools.

 

[emie416]

He is only on reflux medication. I see his consultant on the 20th so I am already and prepared to 'blow up' if need be. I am hoping they will scope him to see where his disease is at. His last scope was two years ago, and at the time I was adamant there was no need for it because he was doing well after a year of treatment, and symptoms had settled down etc. They scoped and still found active inflammation. I couldn't believe it! But fast forward to now, he does have symptoms and no one is batting an eye lid!