7 month old - Crohn's?

[bringthegingotthejuice]

Hi, I'm looking for some advice or to hear from anyone who has experienced similar.

My little boy is now 7 months old, he had surgery on Friday for a fistula & abscess. He is currently under investigation for Crohn's.

He has the following symptoms :-

Fistula
Abscesses
Diarrhoea (up to 20 dirty nappies in 12 hours)
Growth/weight issues, he dropped 4 centiles since birth
Has problems with reflux which is managed by medication
Also appears to have a sensitivity to ibuprofen (only discovered that this weekend post surgery for pain relief!)
Recurrent UTI's
CMPA

It has been a constant battle trying to get him the help he needs (I was in and out a&e regularly due to his abscess becoming infected and ended up septic)

I voiced my concerns to his GP around 3 weeks ago regarding him potentially having Crohn's. It seems he has a lot of the symptoms.

Anyone else have a young child with Crohn's?

Thanks for reading

Anyone?☹️

This must be really hard to deal with. I'm not sure if we have previously crossed paths re fistula surgery - my son had that when he was 5 or 6 (he's older now)... he was also investigated for Crohn's after that - but they didn't find anything conclusive one way or another. If I recall - it can be very tricky to diagnose given if you don't do the colonoscopy during a flare up - perhaps there's not much to see. I know that if he had been diagnosed with Crohns he would possibly have been considered for immunotherapy - but he was in a different age bracket.

How is your little one recovering from the fistula surgery? So sorry you're going through all this - it's very upsetting.

If you are on Facebook I would join the “UK parents of kids with IBD” group there are a number who had very early diagnosis who might be able to help. I have two with Crohn’s but diagnosed later on. But sympathies it is tough.

Thank you, I managed to get an appointment yesterday with an excellent GP who has seen my son since he was a few weeks old. They've ordered a stool sample in a few weeks time to allow things to settle post surgery to check his calprotectin (think that's what it's called!) so hopefully that might give some answers. Annoyingly this should have been done on a previous stool sample but was missed and never checked.

He's coping well post surgery, bless his little heart. I think I find it more distressing than he does. He's had awful diarrhoea since after the surgery, so not sure if this is a side effect from the anaesthetic or the ibuprofen (we've since stopped giving this) so that's a bit tricky given the location of the surgery.

Thanks for the suggestion of the FB group I'll have a look.

We are seeing his consultant in July and then the surgeon again at the start of August so hopefully we may get closer to a diagnosis.

I know it really is confronting to see the wound post surgery. I think we were given movicol post surgery to make sure the stools were v loose anyway, but diarrhoea will wipe out his natural gut flora which in turn prolongs the diarrhoea. Ask your dr about giving probiotics as they can really help. Good luck with it all.

This is really difficult dealing with a child so young. My son was 8 when diagnosed with crohns and I thought that was young enough.
I second the facebook group, it is really good for help and advice for parents of children with crohns or colitis.

Any type of ibuprofen should be completely avoided as it can make things a lot worse.
A calprotectin test will show the amount of inflammation there is, the higher the number the more likely it is to be IBD.

A colonoscopy will then be arranged to show how far the inflammation goes and whether it is crohns or colitis. Good luck with it all.

Has he been checked for gluten intolerance too? Sounds eerily like my friends ds, he is coeliac but as a baby before weaning he had all the symptoms you described and it was the gluten in her diet causing it, she was breastfeeding. He was 14 months before anyone thought to check for gluten intolerance (15 years ago)

Thanks for the replies,

Yes the wound is pretty hard going, but will definitely look into probiotics.

We're still awaiting our dietician appointment which is in July so will ask about the gluten. We are breastfeeding and I'm not avoiding gluten so could be a possibility. The diarrhoea does seem to be slowing now but we've had a really awful nappy this morning, greenish and completely slimed with mucus. It looks like a nappy we had before we cut dairy. I'm certain I've not had a slip up and certainly haven't eaten anything new in the last 48 hours. So again not sure what this is. He's not had ibuprofen since Saturday after I read the leaflet saying do not give to Crohn's sufferers! I feel like this just confirmed it for me really.

Hello there! I know that this is an old thread, but I was wondering what your LO’s outcome was with this?

I’ve just been to the doctor today as my 5 month old DS has a slight abscess on his anus. Doctor has asked me to keep an eye on him over the next few days before prescribing antibiotics. My DS has had so many digestive issues since birth (CMPA, reflux, still has upset tummy’s and weird poo’s despite being on Neocate since 8 weeks old, still has reflux episodes but on Lansoprazole, can’t poop unless I hold his legs for ages and rub his tummy but explosive thereafter), I feel like there could be another reason for all of this and I’m struggling to put my finger on what.

I Hope your LO is doing okay xx