Not yet diagnosed

[Jordansangel]

Not really sure where to start with this (we're new to this and may not know the right terminology).... My son is 14 and and has has symptoms for well over a year. Not gaining weight, long periods of loose stools and blood present, tried, pale. It been a long road to get to where we are now with him. He's had several faecal calprotien tests that show inflammation, blood tests that have been very irratic, (showing high lfts, and prolonged blood clotting and irratic white blood cell count) which they have said is propably due to auto-immune problem. He has been admitted to hospital with inflamation of his upper arm's, which at the time they put down to bacterial celulitis but they have since questioned if this could have been arthritis . Where we stand it the minute is he's just had a ultrasound which hasn't showed anything, but he was have a good week, and he has an appointment for a endoscopy and colonoscopy in about 2 weeks. We're worried about so much, if he's not in flare will it even show anything? What with all the coronavirus scare am I best keeping him at home, we've noticed even a small cold makes his symptoms much worse and as he's not diagnosed and he's not on any meds at all yet we don't know where he stands in the whole thing. I've been trying to get hold of his pedatrician for advice but he's obviously very busy. We just need some advice, and is it normal for the process of diagnosing to take this long? Many thanks Jordansangel.

 

[kiny]

he's just had a ultrasound which hasn't showed anything

Ultrasound is a useful tool for follow up patients and during acute events because it can be done in a few minutes and it is mminimally invasive. But ultrasound is not useful for diagnosis, it is far too inaccurate for that. Only a colonoscopy can properly diagnose a patient.

he has an appointment for a endoscopy and colonoscopy in about 2 weeks. We're worried about so much

A colonoscopy is looking for tissue damage, pockets of immune cells (often in the form of granuloma, which are pockets of macrophages) and will rule out intestinal tuberculosis and foodborne infections. Make sure biopsy specimens are taken.

we've noticed even a small cold makes his symptoms much worse

I haven't read that the common cold has any effect on the course of crohn's disease. The inflammation in Crohn's disease is due to a cell-mediated response from activated macrophages that try to kill phagocytosed microbes, it is not a humoral response. It is a specific response in the ileum and colon where T lymphocytes and macrophages try to kill microbes that are present within the cells. The immune response is very different from a common cold.

 

[Jordansangel]

Thank you Kiny. We were hoping that it would be the case that the colonoscopy would show more than the ultrasound, but because its been such a long road to even get to this stage, your mind goes into over kill. Regards the affects of cold in his symptoms ( I don't under stand much of your very scientific terminology , as we are only just learning and just trying to get to grips with the basics) but he has had very extensive blood testing as they did suspect a blood disorder for some time too, they disribed it as when he gets a cold or sore throat or any infection that his body goes into overdrive and attacks not only the infected part it attacks all the surrounding healthy cells too. He will carry on having investigations after his endoscopy and colonoscopy. He is under weight at 168cm and 38.9kg and generally has 6-10 movements a day. We seem so close to a diagnosis but I'm scared that if he even gets a cold they'll postpone his investigations and we'll be in limbo again.

 

[pdx]

Hi there. Sorry to hear about all that your son has been going through this past year. Unfortunately, it is not uncommon for diagnosis to take such a long time. I hope the endoscopy and colonoscopy will give you some answers, and it shouldn't matter if your son isn't flaring right at the moment. It is possible, though, that the scopes won't show anything if your son has inflammation only in his small intestine. To see what's happening there, an MRE or pillcam is needed, so that is something to ask about if the scopes are clear.

Hang in there! It's hard when you are still waiting for a diagnosis. Whether or not it's IBD, I hope you get answers soon.

 

[crohnsinct]

Hey there. Sorry it took so long to respond things are a little crazy these days.

A cold won't delay the colonoscopy. However, Covid-19 might delay the colonoscopy a bit. There are a few reasons for this. First, is the risk of bringing him into the hospital and potentially infecting him. Second, if he might have it, it could be in the stool and there could be a very small chance that the could infect others, the need for all hands on deck to handle Covid patients and last but not least the need to preserve all personal protective equipment in order to handle other emergencies Covid and others.

That being said, I believe most GI's are saying they are in favor of scopes in order to come to a diagnosis in patients who are in acute distress. So it is possible that your GI may still do it. Also, if he is having it done at a children's hospital that might make them tilt more toward moving forward as less children are in the hospital due to Covid.

If he has IBD and it is not treated even though he is not symptomatic (which it sounds like he sort of is with 6-10 BM's a day and being underweight), inflammation will still show.

The road to diagnosis is usually long. My two took years to get a diagnosis. Hang in there!

 

[Jordansangel]

Thank you so much for responding... unfortunately I had the call yesterday to say his up coming appointment had been cancelled with no way of knowing when it will be rescheduled at the moment .

We also recieved a more in-depth letter on the result of his ultrasound, which we are desperate to get some clarity on but his pedatrician is on leave and my GP hasn't recieved the info yet.
It states that all the major organs are clear however the are multiple prominent lymph nodes throughout the mesentery. And that his latest calprotien is now above 600.

Like I say we are new to all this and I'm never sure how hard to push for answers but my son's energy levels are at an all time low.

Just wish they could give us a short term fix to boost him till they can diagnose properly.

 

[my little penguin]

Unfortunately even if he was scoped
Timeline is typically a week for results in the US
Then another 1-3 weeks to get MRE or pillcam
Then steriods or Exclusive enteral nutrition (formula only ) are started
Plus maintenance meds at same time
Steroids or een can take 8 weeks to work
Maintenance meds
5-asa 30 days to work (not effective for majority)
Immunosuppressants
Methotrexate 3-4 months to work
Imuran 3-4 months to work
Or biologics
Remicade 6-12 weeks to work
Humira 3-5 months to work

My point is waiting for testing stinks
But in Gi land there are no take a pill and your better the next week or month
Hugs

 

[crohnsinct]

With no end in sight to the wait, you may want to see if he will drink Boost or Ensure. They are often used as a first line treatment of the disease to get inflammation under control while we wait for maintenance meds to kick in. Typically we wouldn't suggest this if you had upcoming scopes but you also want to get his energy back up and get some weight back on. Rapid weight loss and really low BMI is pro inflammatory and if he has IBD it might kick in a flare. So, I would start seeing if he will drink Boost or Ensure. When we treat the disease with Exclusive Enteral Nutrition, the kids don't eat anything and just drink formula (Boost, Ensure or others if they can't tolerate those) and water. This approach is as successful as steroids in getting inflammation under control, adds good weight and even heals the mucosa better than steroids.

Search the parents section for lots of tips and tricks on weight gain.

Hang in there. Diagnosis takes a while and this is a crazy time.