Update:scope

[my little penguin]

Ds's Scope is done.
6 months ago visually everything looked good but microscopically there was evidence of acute and chronic inflammation in his :
stomach
Duodenum
Terminal ileum
cecum - granuloma
rectum- prolapse - no microscopic signs though

he took 6-mp, did EN, had a round of pred and added asacol and allopurinol.
Numbers wise he looked good. Sed rate/CRP went back to normal but symptoms kept getting worse (stomach pain, urgency issues)
So off to a scope with the intent to go on remicade.

6-mp did not stop the progression.
He officially has colitis. He is visually inflamed from his rectum to his sigmoid colon. He terminal ileum is inflamed and his stomach "looked angry" per GI.

So even though he was dx very early-(i.e. we were looking for something else)
because we were looking to the blood test and diarrhea for signs of increased disease- he got worse without us knowing how bad it was.:voodoo:

SO now we wait for the biopsy but really upset since we may have been able to stop some of the damage earlier.

PSA- if your child is having symptoms please keep pushing for answers as why the med is not working.

 

[Sascot]

Sorry to hear the scope showed everything to be much worse. At least it is done now and hopefully a better medication will be used! There is nothing you could have done sooner - we do tend to beat ourselves up about things. I get upset because we went 5 months medication free (in my sunny dream world I hoped he would be fine) and I wonder if Andrew had taken meds immediately he wouldn't be suffering from this peri-anal abcess/fistula. Good luck with whatever treatment comes next!

 

[DustyKat]

Ah hell lmp.

I am so, so sorry to be reading this and what your boy is going through. :hug:

I hear you about symptoms and tests. I learn't that lesson the hard way too with my daughter. She was undiagnosed at the time but all tests kept returning normal results and she just continued to deteriorate. As a result I will never believe another test result unless it matches what I see before my eyes.

Having said all that sometimes knowing doesn't change the outcome either hun. I understand your guilt and frustration there too. On the other side of the coin my son's bloods showed everything even without symptoms and even with all the knowledge of what was happening and treatment we were powerless to prevent him ending up with surgery.

It's tough not to blame yourself for what is happening and isn't 20/20 vision in hindsight a bitch! :hang: Mum, you are doing a fabulous job, you truly are. :heart:

Dusty. xxx

 

[Farmwife]

I pray the meds will bring every thing under control.
Please don't be hard on yourself.
You were doing your best on what you knew.
We've all been there!:hug:

Farmwife

 

[Catherine]

So sorry current treatment has not work for your boy. Hopefully the next will and these will make that move happen quickly.

 

[crohnsinct]

OH MLP! I am so sorry about the scope results. Please don't beat yourself up...you were making the best decisions you could at each juncture and had the advice of trained and experienced experts. You made every decision for your little one out of concern, love and protection. This is a very weird illness and almost impossible to out guess. What are we supposed to do? Get blood tests every week and scopes every month? Looking at his treatments thus far it looks like to me you tried plenty.

Thanks for the PSA. Been feeling a bit defeated myself. O's diarrhea continues as does the blood. While she seems fine the bathroom shows differently as does sports energy...I am expecting not such great blood results next week and am preparing to make the Methotrexate decision At this point it has been four months and I just want her better.

I really hope the next treatment works!