Son in remission?

[farmerswifey]

Hi guys, I haven't checked in for a while, hope things are well for you all, or as well as can be!

My son is good atm, playing sport, lots of energy and growing! Still taking 6mp and Allipurinol, his last lot of blood tests came back all good, the only test that has come back slightly elevated is his faecal calprotectin, which is 130 (range here is less than 50). Our GE said he is happy with this result, even though it is not in the range, as he has no other symptoms at present and is healthy. He said he may still have some low grade inflammation in his body??

I am hoping he is now classed as clinical remission? Would that be right? Also our GE suggests blood tests every 12/16 weeks, is this ok since my son is taking the two drugs above?

Thanks for reading!

 

[Catherine]

Sound like clinical remission to me.

It know Dusty like the blood every 2 months. I think I have got our GI round to Dusty way of thinking.

Sarah is also in clinical remission, but doing blood tests every two weeks as we are still playing with dose rates.

We are get FBE and LFT's

 

[farmerswifey]

Thank you, I think I would prefer blood tests a little sooner than what I mentioned, only because of the meds and what they can do....x

 

[Mehita]

Can I be jealous of his remission? It does sound very good. Our GI is only concerned about fecal cal if it starts getting above 500. Very concerned over 1000. While 130 is over the range for a normal person. I don't think it's necessarily considered high for an IBD person.

I'd be more comfortable with every 12 weeks versus 16. My son is on Aza (similar to 6MP) and he's supposed to go every three months.

I think you're in a good spot, farmerswifey. Enjoy it!

 

[farmerswifey]

Thank you x I am happy, his very first fecal cal level when diagnosed was 1800, so it's much improved! Hope your son is ok x

 

[upsetmom]

Thanks for the update

Good to hear everything's going well.

We try to get blood done every 3 months but it never happens my daughter usually gets sick before the 3 months are up.

 

[Dexky]

We do bloods every 3 months w/o ever having true remission so I'd think 12 weeks is fairly common! I hope the good news just keeps coming!!

 

[Sascot]

Glad things are going well, my son's calprotectin was 160 and our GI was quite happy with that. As for bloods, we are also meant to be every 12 weeks, but I prefer every 8. They are happy with that (think they are humouring me :lol

 

[CarolinAlaska]

It sounds good. I don't think we'll ever be able to completely relax as parents with kids of this disease, since we can't see what is happening silently in the hidden places, but I think our kids start giving us clues when things are going awry. I think your boy seems to be doing well - rest and breathe while you can! I hope it stays this way forever!

 

[farmerswifey]

Thanks for your replies! xxx

 

[Jmrogers4]

That is great news farmerswifey, seems like I've heard somewhere that anything under 300 for IBD is good.
We are the odd bunch as blood seems to be every 6 months for the last 1.5 year but when he was on aza it was every 12-16 weeks. Although if something is "off" on labs they are done at closer intervals. Labs in Feb were great all normal, were supposed to do in July but he had C-Diff so will do in Oct. and if all good repeat in 6-12 mos. as long as nothing changes.

 

[DustyKat]

Hey farmerswifey,

As Catherine has said, it is my personal preference to have bloods drawn every 2 months due to my kids age and medication. I am still in my comfort zone with 3 monthly but wouldn't be comfortable with anything over this interval.

It is so fab to hear that your lad is doing so well! :dusty: Fingers, toes and everything else crossed that this a very loooooooooooong time! Good luck!

Dusty. xxx