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

@AngelsWithSilverWings I did wonder whether to give them to him - But he has always had them and then I changed to a probiotic a couple of months ago but I'll check with them when I get the follow up appointment, not sure I'm seeing a consultant at the bone scan

@Whywonttheyletmeusemyusername

How are yo and your DD?

ok this end DS is fine - we are back to St Thomas's next week for the bone scan, they also want to give him iron intravenously as he is below normal levels .. not too bad apparebtky and then his biopsy results so it will a day at the hospital for us!

Hi @Remmy123, thank you for thinking of us DD has been diagnosed with a displaced bowel. She's actually ok in herself..probably better than she has been for a long while. I think its because she now knows what's wrong, rather than, is it this/it could be that/might not be that etc. We're a week into disimpaction....which isn't pleasant, bless her, and on a liquid diet until the worst is over. Once disimpaction is sorted, her Consultant will make arrangements for surgery.

So pleased your DS is doing well. Have they advised anything else to be done before the IV iron ? Supplements or anything? I am always amazed at how much better I feel once I put myself back on iron tablets when I never actually felt like I was ill How is getting feeling about having the scan?

@Whywonttheyletmeusemyusername that's great you have a diagnosis now - what a rollercoaster!! So after surgery she will be all sorted then I hope!

They don't advise iron tablets as it can cause inflammation or something do not good for IBD!!

I'm glad we are getting all the appointments in in one hit - he is nearly at the end of his medication so not sure what they will do next hopefully stil remain on mild medication.

Oh really? I didn't know that @Remmy123, thats useful to know. DD2 is on iron tablets. Its been awful if I'm honest ...DD and me are both exhausted...both mentally, her definitely physically also....but I can see a light at last.

@Whywonttheyletmeusemyusername Have you got a contact at the hospital? We have our own nurse I can text and I checked regarding the supplements i am already giving which she said were fine (Dr Formulated pro biotic) when I suggested I give iron supplements too she said not to as if tummy is already inflammed it *can make it worse, hence why they want to do it intravenously.

If she is low in iron i would check the tablets she is on with the hospital.

Hats off to St Thomas's they have been amazing!

Hang on in there, you have a proper plan now which you didn't have before - take care of yourselves x

Thanks @Remmy123. So appreciated, I can't tell you. Its nice to know that there are other people in the same sort of boat, and the kindness of strangers is amazing. No, sorry.. its one of my other DDs thats on the iron. Yes, there are many of them Youngest DD isn't putting anything in her stomach unless the Doctor tells her to . We do have our own contact yes, but responses are shockingly poor, and I do feel quite let down if I'm honest, by both RF and GOSH. Far be it for me to complain though...both hospitals do an amazing job. Please let me (us) know how you get on with your DS...I am thinking about you both, even tho my replies are very slow atm...

Anyone's child had joint pain?

My son is complaining of aching knees and ankles hurting all at the same time?

I know inflammation can cause this but the medication he is on is supposed to reduce this? And this has been on and off since the medication! B Movements all normal now Abd have been for some time.

So I do not know if it's the colitis / medication or low iron as he is anemic 🥲

could be either. Joint pains is common in Crohn's so maybe colitis is also related it can be helped when treatment is established. Sometimes treatment for colitis takes a while to get up to a therapeutic range.

Low Vitamin D can cause also leg pains they will have probably checked his vit D level and informed you if this is the case.

Unsure about anaemia.

Mention it at the next outpatient appointment/to IBD nurse

@springisacoming thanks

I spoke to his nurse - vit D is fine

She said it's odd this has happened all of a sudden, and may be unrelated but she also said there is no medication he can take apart from pain killers!!! How can a 12 year old all of a sudden not be able to run any more and there will be nothing we can do 😥

Hopefully it's just bad growing pains!!!

It could be completely unrelated. Knees are affected with growth spurts. You have let the Team know so that is good. My DC did have joint pains and was given a gel to rub on which the GP prescribed. That was really helpful it.

Hopefully It will resolve spontaneously.

@springisacoming that's that's good to know - I am just beside my self with worry constantly.

He is now saying it's hurting to walk

Please let this be a much needed growth spurt or something!

Just I'd check in with this thread again. Hope everyone is getting on ok and getting the help they need.

My DD is doing fine on her maintenance dose of immunosuppressants. No more flare ups so far thank goodness.Still getting regular tummy ache and dizziness but I wonder if that's more due to the medication rather than the IBD.

Have any of you looked into trying to get a Covid vaccine under the guidance for immunosuppressed children? I'm awaiting a call back from my GP after receiving some info from Great Ormond St.

@AngelsWithSilverWings

Hey nice to hear from you, so glad your DD is doing well!! I was also going to resurrect this thread!

I've found it really hard to process his diognoses to be honest, very up and down mentally, but he has been so well I really need to stop worrying until I have too.

He is still on a low dose of Pentasa and interestingly he has been complaining of dizziness too, not badly but a few times. I messaged the IBD nurse who will do his bloods to check for any deficiency.

Re the vaccine I do not want for my son just yet but he is on a different medication but definitely worth asking? I'm surprised it hasn't been mentioned?

Hi interesting that your son complained of dizziness too. My DD is on two sachets of pentassa a day plus 50mg of azathioprine. Her levels all seem fine when she has her bloods done. She's being checked again early September. Haven't heard back from the GP about the vaccine yet but I'll update when I do.

I'm sort of ok with the diagnosis mainly because I was imagining all sorts of awful stuff when she was so ill and before we discovered what was actually wrong.

DD is annoyed that she can't "just be normal" but also relived that it's all under control. She is having some counselling as her illness and hospitalisation was very traumatic because of her being so sick and having completely lost control of her bowels by the time she was admitted. It's caused some OCD around cleanliness , anxiety and an eating disorder sadly.

@AngelsWithSilverWings oh bless her!! It's great she has some counselling to help her with the trauma, im sure it will help hugely!!

I'm glad you are ok with the diognosed as sometimes I feel like I am being irrational/ OTT with my feelings. I basically went into a googling frenzy and what I read was very frightening (but generally people write the worst on forums, not mumsnet but US forums!)

Did you mention to hospital about dizziness? Be interested to see what they say?

.... ive just reread you message re the eating disorder and I am so sorry to hear that especially. She has been through so much but like I said, it's great you have got counselling underway!

I will mention the dizziness at the next meeting with the nurse and let you know what she says. Do you have email or text access to the IBD team?

I can ask any non urgent medical questions on the MyChart/MyGosh app. It's been very useful when I've been worried about things as they usually answer my questions by the next day and it always puts my mind at rest.

We also have a dedicated nurse at our local hospital children's ward who I can phone if I'm worried too. It's the same nurse who does the blood tests for us so we've built up a good rapport over the past year.

@AngelsWithSilverWings that's great you have a good support network!

I have a nurse I text if worried, I messaged re dizzy ness so She emailed my GP today to arrange blood tests. I'm wondering if he is anemic.

Can I asked if you give your daughter vitamins? Maybe I shouid be giving him
Better vitamins (currently takes a probiotic with vitamins C and D included). It's all a bit overwhelming at times I put a lot of pressure on myself to give a varied diet but he is v fussy so hard!!!

And I'm quite sure his flare up was caused from starting secondary school and the stress of that - food seems to make no difference!

DD was prescribed a treatment course of vit d as her levels were very low. She now takes Well Teen multi vits as well.

She had an iron infusion too as she was very tired all the time - that helped with her energy levels but she's not back to normal yet.

I looked at Well Teen I think I'll get those for him too.

My son also had an iron infusion and wondering if the dizziness means he needs another!!

I still think it's the tablets to be honest though as never complained of this dizziness before! Will seee what bloods say ...

GP just rang and booked DD in for Pfizer jab in September. Could have had it next week but we are on holiday. Very relieved.

That is good news..and in time for school!! V pleased for you x

Hope everyone is doing ok. We've had a little set back. We're on holiday in Greece and DD has started bleeding again so is clearly having a flare up. Not the greatest timing while we are away from home but she is coping with it ok so far.

Have messaged the IBD team at GOSH who are as brilliant and reassuring as ever. We are now in discussions about increasing her dose of pentassa but we sadly only brought enough for the days we are away which was a bit silly really. We just got so relaxed because she has been fine since her diagnosis.

@AngelsWithSilverWings sorry to hear that.

How long are you away for? Has she been drinking or eating anything out of the norm whilst away? Fizzy drinks etc?

From my limited experience because it's all so new to me, but in the meantime maybe stick to bland food such as plain white pasta / bread / mashed potato etc so not to irritate her colon further

Hope she isn't in any pain and able to enjoy her holiday? Poor thing.

We have just got back from Spain and i must say I was concerned he may have had issues as he drank fizzy drinks all day 🥺🥺