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

What a nightmare!!

Hopefully the hospital can give you some advice, if it is those tablets making her sick and dizzy then hopefully they can try something else?!

Use today while she is at school to calm down, Yes she wasted people's time and she shouid have discussed it with you, but let's just hope this is a lesson learned.

It's a difficult age esp with all of the hormones flying around .. but add this to the mix it makes it harder!

Hopefully her Consultants can come up with a plan that you are all happy with.. this must happen all of the time!!

Go easy in yourself x

How is everything @AngelsWithSilverWings?

Hi , we have all calmed down a bit after Sunday's nightmare and DD seems a bit better now as the foam seems to be helping already.

GOSH have referred her to the psychology dept as they are concerned by her behaviour so we are waiting for an appointment. No additional medication needed as they just want her to build up the azathioprine levels again.

I've self referred for help with my anxiety as that went through the roof and had been gradually getting worse and worse since this flare up started. Had my assessment today and have been referred for CBT but the waiting list is about 8 weeks so will do some on line courses in the meantime.

Hopefully now we can just move on from this and get her back on track again.

Thanks for checking in x

Glad the foam is working, that is good news no steroids are needed!

GOSH sound like they are giving her excellent care

Re your anxiety - I can relate to this as I have been so anxious since his diognoses, glad you are getting CBT I think i need to do the same it's supposed to be amazing!

Things can only improve from here and put this down to a blip!!!

X

Hi, can I join this incredibly helpful thread? My 11 year old DD has just had a Crohn's diagnosis. Also constant diarrhea without pain, but reportedly has moderate to severe disease diagnosed by cameras up and down. About to start the 8 week liquid diet. I am looking forward to seeing some colour back in her cheeks. We are in hospital for a few days to start the meds.

@Fullywhelmed sorry to hear of your DD diagnosis I imagine it was a huge shock to you, I am still coming to terms with it myself. But I am happy to say my son is doing very well. He didn't have to do the liquid diet, but I hear it is very beneficial and will get her into remission!

I hope you are also doing ok .. I was a total mess but I was also pleased to finally find out what the issue was x

I have ended up on sertraline for the anxiety of watching her decline over the past months, thinking I was worrying about nothing or had lost my mum instincts. I took her to A and E twice in a month when she kept spiking temperatures, and so pale. Tbh I thought it was leukemia or lympohoma. So in a way it's a relief to know what we are dealing with. I really hope the shakes work on her. She has tried two flavours this evening and liked both, which is good as she can be a fussy thing.

Thanks for replying @Remmy123
It's good to feel less alone.

@Fullywhelmed I have a packet of serteriline in my bedside table as I have got myself into a very anxious state I can't snap out of (even though he is well) - has it helped you?

That is great she like both flavours .. that is a relief!! She will get her energy back before you know it.. my son has just spent 2 hours football training tonight and has a school football match tomorrow after school - he had to have a iron transfusion after diognoses but since then all good x

It has literally been a saviour, @Remmy123, though it did make things worse for a few days - days 4-8 were not fun. I was getting a physical reaction to her symptoms - couldn't eat, couldn't sleep, had to keep taking myself off to bed as I couldn't cope. Now I am able to parent her as she needs. I am still worried of course, but I am functional.

Glad to hear tablets helped you.. I can totally relate to those anxious feelings... I was also taking myself off to bed, got into an anxious dizzy state and still often wake up worrying, I have a toddler too so was hard. DH on the other hand is as cool as a cumber which I take some comfort from!

When is day one of the liquid diet? It will really help get those lost nutrients back in her and then you can put this behind you and hope for a long remission. At least she will be able have her Christmas dinner!

Day 1 is today! She is to stay in hospital for the first few days while they monitor her blood salts as she is very low BMI (for obvious reasons).

Fingers crossed this works for her x

Good luck 🤞

She is in the best hands x

We are home! DD is drinking her bottles like a champ. So immensely proud of her.

How are you guys doing?

@Fullywhelmed hi!! Glad you are home and your daughter is doing so well with her drinks!! Amazing!! You must feel relieved!

Is she on any other medication or just the shakes? Is she back at school this week or having some time off?

Hopefully you can give yourself a bit of a break too it's very traumatic for parents to watch x

She is on salofalk granules and azathioprine and I gather will have infliximab infusions later. How about your DS?

Oh, hoping to get back to school Monday. She'll be missing plenty with all the blood tests, infusions etc and she loves school.

Are you in the U.K.?

My son is only on pentasa ( think it's same as salofalk but a different brand) but from my extensive googling most are given further medication to treat so although I'm glad he is on a mild medication I hope it can keep him in remission.

His symptoms had all gone by the time he had his colonoscopy so I guess that is why.

Yes, in the UK. She was "moderate to severe", weight had dropped from 50th to 10th centile and had already lost a section of small intestine to intussusception when much younger so maybe they are being "belt and braces"?

I just want to see her with some colour in her cheeks and some energy. She has been grey and laying on the sofa after school for a while now. God I hope we achieve remission.

The reason I asked if iou was in the U.K. is I read a IBD forum mostly is posted I think and it seems in the US they go straight for infusions to get/keep kids in remission.

From my 'extensive' reading I have heard the infusions are a game changer I am sure she will be thriving and living life to the full before you know it!!

I've also noticed my son can eat anything he wants so im pretty sure for him it's not related to food but it's still very new. I've been watching him like a hawk with toilet habits but I'm backing off a bit now as it was just all a bit intense for me and annoying for him 🤣

Yes I have a friend in America who is a nurse in this area. They don't do the liquid diet, she says, but go straight to "biologics".

I wonder if in the US it's paid for via insurance but in the U.K. it's expensive treatment so may only give it once everything else isn't helping or it's severe - no idea but in any case the medicine for IBD has come on in recent years so I am pleased there are lots of options for our kids.

@AngelsWithSilverWings hope your DD is doing well too!! X

Hi @Fullywhelmed , sorry to read about what you've been going through - I'm currently having some on line and telephone therapy while I wait for my face to face CBT to be arranged after the anxiety I've been though with my daughter's diagnosis of Ulcerative Coliitis. My GP will only treat anxiety with pills if the CBT fails to make an improvement. I think so far the therapy is ok but I won't know until we hit the next crisis!

Thanks @Remmy123 - DD is much much better and is taking her meds like a good girl now. The foam has worked wonders but it's so unpleasant for her to take and we hope she can be weaned off in a week or two.

New school has made a massive difference to her too but she is still needing her counselling.

I don't even want to think about how much all this treatment would have cost if we didn't have the NHS!

Glad all is ok and your daughter is doing well!!

Hopefully there will not be a next crisis... positive thinking!! X

Also - has anyone noticed growth delays? My son has barely grown since he started secondary. Consultant doesnt think so and I assume that would happen if he kept flaring but I dont know.

My husband has since put the whole family on his private health and we have seen a private peadetrucian (got an appointment within days) who might do a scan of Wrist bone to check his growth. He will be 13 soon and one of the smallest of his mates.. think he hates it!

Just another thing for me to worry about 🥲