12 year old extremely fecal calprotectin IBD

[Remmy123]

My son has had constant diorreah since Xmas with fresh blood. We are waiting for an appointment to the gastro ward but I saw his results and his fecal calprotectin was sky high (2,000) the week before it was 550.

He does not suffer, he has no stomach aches , eats normally and has energy, looks well, etc

The doctor was amazed with such a high reading he is not in pain.

He tested negative for celiac so they think it's IBD.

I'm thinking Chrones but the more I read doesn't that come with stomach pain and feeling unwell?

Anyone have any thoughts?

Thank you

Hi @Remmy123 I'm so pleased you finally have a diagnosis. That must be a weight lifted. How is your DS dealing with it? He sounds like he's back to good health. So pleased for you both.

My DD is still struggling, albeit not as much. We have a "diagnosis" of a displaced bowel, but that's from the GOSH team. The RFH team have gone back to their Crohns diagnosis. All this tooing and froing is playing havoc with both of us. However, we now DO at least have several different appointments at both hospitals for various procedures, and thankfully they've now upped their game where she's concerned. She starts another test tomorrow for 4 days, but thankfully she does it at home, with the 5th day spent in RFH. I'm exhausted, DD is exhausted....but we're still holding it together!

@Whywonttheyletmeusemyusername oh you poor thing - the not knowing is definitely hard .. I really struggled the two weeks leading up to the procedure .. was very emotional and anxious.

It does sound like they are pulling their finger out now and things are moving forward.

I hope you get a diognosed soon and put it behind you - sending you and DD a sympathetic hug!

My DS is totally cool with his diognoses - we do not have the biopsy results back yet and he needs a bone density scan but with any luck the medication will sort it out.

If told him he needs to maintain a balanced healthy diet going forward.

I got him Dr Formulated probiotic apparently very good vitamin, will need to make sure he gets sufficient vitamin D. Trying to be healthy in the week and then treats at weekend!

X

@Remmy123
I am glad that you got a diagnoses. Which meds has he been put on. Is he on prednisolone [ steroids ] to bring the inflammation down? If so you will find he will eat you out of house and home for the next few weeks :)
The bone density scan is really simple. I remember my son having to have one after his diagnoses of crohns. Good luck with it all. You will probably find it all overwhelming at first, but you will get there.

I recommend CICRA or crohns and colitis UK to look up information for schools. It is very useful as they need to understand the condition and the amount of time he could possibly have out of school. Also ask for a toilet pass --- this allows for them to get out of class no questions asked.

@Londonnight hope you and son are well!

He has been out in pentasa which I believe is anti inflammatory - starting it today For a few weeks then I'm not sure after that?!

He has got a toilet pass but refusing to bring it to school as says 'no one poos at school mum' 😬

@Remmy123 pentasa is one of the milder medications and often doesn't work on it's own.
My son was put onto azathioprine and pentasa at diagnosis.

You may find they will want to put him onto biologics, like infliximab infusions or humira [Adalimumab ]. Infliximab is starting to be rolled out as injections rather than infusions for adults.

Your son may well change his mind about the toilet pass as time goes on :) It is really hard for them at this age as they just want to fit in and not be different to anyone else.

Also facebook has a really good group " parents of kids with IBD" which can help with lots of information.

Sorry to derail for a moment but ... Londonnight can I ask..do you know any more about infliximab being given sub-cut instead of IV? Where it is being trialled etc?

Or, if inliximab is currently given IV 8-weekly is the sub-cut version the same timing or is it given two-weekly like humira
and if pre-med is currently given with infliximab would this prevent being offered the sub-cut version?

I hope you don't mind me asking. thank you

Thank you

@Londonnight I think they are starting him on a milder medication and review in a few weeks - I'm not sure - he has very mild symptoms thankfully - I guess it's a wait and see process.

Sounds like you know your stuff you are very informative, thank you x

Thank you @Remmy123 hug accepted gratefully Total ignorance here, but why the need for the bone density scan? What does that entail ?

Also agree @londonnight, you're a mine of helpful info

@spilledthebeans My son still has the infusion version of infliximab, so far he hasn't been asked to go with the injection pen.
I think covid may have speeded up them giving this as it keeps people out of hospital when they don't need to be.

From my understanding the injection is every two weeks, the same as humira is. I don't know where it is being trialled. I am on the crohns and colits UK facebook forum and more and more people are talking about going on this version, and they are obviously from all over the country. I also think, at the moment, this is only being given to adults, not children.

Infliximab normal time frame is 8 weekly, but this can vary with symptoms etc. My son has had to go 5 weekly in the past for almost a year, but he is now back to 8 weekly.

My son has been on infliximab for 7 years. The antihistamine [ not pre med ] was stopped for the last year he was under paediatics [ two years ago ] They said there was no evidence it was needed, so he no longer has that. He has had no problems since this was stopped.

He has been under adult care for almost 2 years and this has cut the infusion time greatly. He is now in and out in under an hour. When he was under paediatrics the infusion itself was 2 hours and the wait in case of reaction was always 2 hours after infusion, which always made it a very long day.

@Remmy123 the bone density scan is to check on growth and osteoporosis [ can be caused by IBD ] . It measures your bone density.
My son, as I said was 8, when diagnosed, and due to his crohns and the meds not keeping it under control properly, he didn't grow as he should, so was delayed in height and puberty. This was why he was started on infliximab when he was 14.

All it entails is laying on a bed with a machine going over the top of you [ not touching you ].

@Londonnight thank you - I though it was to check the meds wernt affecting his bones? But I guess 3 weeks after pentasa wouidnt do that.

He is on the short side so I'll be interested to see re his growth!

Thanks

thanks londonnight for your response. mine too is there for hours having inflix but will be in adult care by this time next year so will be interesting to see if any changes are made to treatment - he has an antihistamine and steroids beforehand but no reactions in 2 years (been on it for 2 1/2 years). Maybe they will trial him off the pre-med before advancing him to the sub-cut version. Will suit him down to the ground though. He has lost so much school sitting on wards.

Never had a bone density scan - despite IBD being very advanced at diagnosis and was very small compared with peers.
Since inflix he has grown about 5".

@spilledthebeans interesting no bone scan I thought that was a matter of course for kids but maybe depends on the hospital - anyway sound like he is growing nicely!

Yes Remmy123 had MRI, cameras, bloods, chest X-ray. I think care changes hospital to hospital. It was flagged up on bloods he needed vitamin D.

Think the growth is stopping now but it was amazing to see the had grown, each visit, once the inflix was started.

Thats interesting....my DD is so tiny for a 16 yo. There was literally nothing of her before all this started, there's even less of her now

@Whywonttheyletmeusemyusername Assume she has hit puberty ok/periods etc?

They should be keeping close eye on her height and weight? Maybe you can do this and work out what centile she is on?

Do they check this at her check ups? If you are at all concerned maybe ask for a scan? Not that you sound have too 😬

Yes, has hit puberty, periods slightly heavy but not enough to make me worried. Always on time though. They check her height, blood pressure, weight etc at every visit, and don't seem concerned, and to be fair, I never really worried about it, but she is just so tiny. 49kg and just 5ft this week at RFH.

@spilledthebeans, I have never known anyone have steroids before infliximab infusions. My son had been on infliximab for 5 years before transferring to adult care and we always had to wait the whole four hours before they would let him go, never had a reaction in all that time.

He started infliximab when he was 14. He was just 5ft at that point, no sign of puberty which concerned his consultant. Within a year of starting infusions he had grown 8 inches!! He also started puberty.
He is now 20, still on infusions and 6ft tall :) Without infliximab I think he would have struggled to grow. It also put him into remission that had been hard to get to before starting it.

Thats great you have a strapping young lad!

DS has only taken his medication for 3 days and is having normal stools (no blood or smell)

I can't imagine it's the drugs as says it will take 2-3 weeks.

Londonnight, I know, I am least happy about the steroid part, I wish they would try it without. Hopefully adult care will do so. That is amazing growth for your son. I did read they can carry on growing for longer that non-IBD children because puberty is often delayed until treatment established.

Remmy123 I'm so pleased symptoms have improved.

whywontthey hang in there. The start of a journey is awful, things do get better when treatment is established. My son dropped off the centiles completely for weight and height was just at 2nd centile. Now, health, height and weight are a world away from the start.

Thank u @spilledthebeans I appreciate that. This thread is my life line at the moment

@Whywonttheyletmeusemyusername It's good to get the support on here as the other forums are frightenly depressing!!

I am limiting what I read for now in google

Good to hear you've got your diagnosis now. As you know my DD has been on this journey since November. She also had a bone scan in February and we were told it's a precaution because the drugs can cause issues. The results all came back normal.

She has had her medication gradually reduced and is now just on slightly reduced azathioprine plus 2g Pentasa a day. Saw the IBD nurse from Gosh via zoom last week and they've suggested she start with multi vits mainly to get Vit D levels up plus she will continue to have blood tests for iron levels. She also needs a test to ensure she is has chicken pox immunity too.

We've been told she will be on these drugs pretty much forever and will stay under the care of Gosh until she is an adult.

She is starting to lose the weight from the steroids now and is finally having fewer tummy pains. No blood since January which is great news.

She now has a can't wait card and a radar key but school have given her permission to use the disabled toilet anyway.

@AngelsWithSilverWings sounds like your daughter is doing well pleased to hear the symptoms are improving!

Good idea re the vitamins - as mentioned earlier I give my son Dr Formulated probiotic which also has vit C & D (read somewhere these are good) promotes immune system and digestive health.

Thanks - I should say that when she was still very ill and bleeding we were told not to give multi vits in case they were too harsh on her insides while she was still inflamed. We have waited until the nurse gave the go ahead. She was on Vit D and calcium anyway while she was taking the prednisone but that stopped when that treatment course ended.