Testing at follow up visit

[MamaHenn]

We have a follow up appointment in May, first one after our 10 year old son was diagnosed with Crohn's and I'm wondering what tests to expect and if others normally have them done prior to the appointment so that they can be discussed. Right now he has only been on Entocort and we're working with a nutritionist. We're hoping to delay the "big guns" as long as we can and are also open to LDN (although I suspect our GI won't be).

My son has not had any testing (other than a vitamin D check from the nutritionist) since his colonoscopy. I'm assuming based on reading these boards that at the very least a blood and stool test should be done. Is that far off? And yet another stupid question since we've never done a stool test: What do I do? Keep it in the fridge? Keep it out? How long? Is a specimen cup from a pharmacy ok or a special bag?

 

[Mehita]

Usually I'm in favor of doing labs beforehand so you have something to discuss at the appt, but in this case, I'm guessing you'll be discussing maintenance options and based on that might need different blood tests. For example, if Imuran/6MP/Azathioprine is being considered, you'll likely test his TPMT levels to determine how well (or even if) he will process the drug. If you're looking at biologics already, you'll need a TB test. They may run some tests to see where he's at for vaccines (my son had a chicken pox titre and hep B run before starting certain meds).

Regular labs for us usually include a CBC, CRP, and hep panel. About once a year his GI runs vitamin levels.

A stool sample, most likely a fecal cal, could be something you do before the appt. That usually takes about a week to process. They should give you containers and written instructions on what to do with the samples. Fecal cal can be kept in the fridge for a certain amount of time. Others samples can sit on the counter. All tend to be somewhat time sensitive so plan on driving them to a lab at some point. If you are unclear at all, be sure to ask.

Good luck!

 

[Sascot]

I think we had a blood test done to egg a baseline for future reference, that was it. The only other thing they did was check whether his body would tolerate the medicines. It is a good idea to have a faecal calprotectin done to measure inflammation levels. It is the only test that ever shows anything for my son. We get given a little container, a foil bowl to catch it in :tongue:. I have never kept it in the fridge, just handed it into the doctors surgery the same day.
Good luck

 

[kimmidwife]

Hi Mamahen,
My daughter is on LDN you can PM me if you have any questions.

 

[DustyKat]

I personally always go armed with test results (I have the consultant cc’d into them if I do them via the GP) and have them done as close the appointment time as possible, for most bloods the week before is ample time. A consultation is more likely to have decisive outcomes if the GI has an idea of how you are responding to treatment.

Having said that this is early days for you so you don’t really know the GI and how he operates. I would contact the surgery and ask if there are tests that need to be done prior to your appointment. If they don’t get back to you or even if they say no I would go ahead, :shifty:, and get some good baseline and clinical markers done. Those being:

-FBC (Full Blood Count) CBC if you are in the US
-LFT’s (Liver Function Tests)
-UEC’s (Urea, Electrolytes, Creatinine)
^The two above I think are referred to as a CMP in the US.
-ESR and CRP (Serum Inflammatory Markers)
-Iron Stores
-Folate

These tests will give the GI a good idea of how your lad has responded to treatment and if there are any underlying issues that need to be dealt with. They can then build on these results with any other tests they feel are needed.

Good luck with the appointment mum. :ghug:

Dusty. xxx