Remission and update of sorts

[my little penguin]

Question for those with "different" children.

How is remission defined??

Is it a low pcdai?
Is it lack of all symptoms including EIM?
Need to ask our GI obviously.
I just see this word being used but Ds does not seem to fit the mold.

EVen before treatment his PCDAI would have been low since his blood marker have always been near normal and he rarely has D. His main issue is C.
Just trying to figure it out.

I just don't think DS read the memo on what IBD is suppose to look like and we found his by accident.:shifty:
Just not sure how much pushing I should be doing especially if he has other issues (IBS like) going on which may never be fixed by the IBD meds and we would be taking the risks for nothing.

He has joint stiffness/pain,superficial vasculitis thing, daily stomach pain, C, sometimes blood (sometimes asacol so hard to tell) 1-2 X wk, temesus, fatigue, vomiting, nausea and ..... and...:stinks: I could go on for days

GI is upping his MTX to 15 mg and keeping him on pred for a month more:voodoo: to give the higher dose of MTX time to work.

He added hyoscyamine(levsin) for the stomach pain it has helped some just not completely.
I think is its causing D?? need more data points to evaluate.

Again need a manual or something Our GI actually suggested "complicated" kiddos like DS- he gives the parents the option of a 2nd opinion at this point since DS his still having issues.:heart:
2nd opinion GI has all his records and is reviewing and coming up with a plan. Once they have a plan then they will schedule an appt. Far trip for us so it would be a multiple day appt with multiple doc/team approach.
Our current GI looked very happy about our choice for 2nd opinion GI.

I really hate the hurry up and wait of this disease.
Hurry up to get to the Doc/test then wait to see (sometimes 3 -6 months) if the plan is working.:thumbdown:

 

[Patricia56]

No that is not remission. That is why your current GI wants you to go for 2nd opinion.

How old and how big is your DS? 15 mg Methotrexate, if is oral, is a low dose in our experience. Badger is currently on 30 mg and was on 25 for the past couple of years.

In my book, remission means virtually no symptoms - certainly NO blood, labs normal, growth normal (even if catch up children should be following a normal or accelerated curve) no EIMs of any significance, no limitations on ADL's (activities of daily living).

That is remission.

PCDAI is a research tool and should not be used to do clinical evaluation of patients. It's just a way for researchers to say that they are measuring the same thing as everyone else.

Hope the 2nd opinion is able to help. Sounds like it will be a comprehensive assessment.

 

[my little penguin]

He has weekly IM injections.
He is only 8 yrs old and about 66 lbs.
With exclusive EN therapy 9 weeks (peptamen jr) and our last pred series Jan- Feb he was able to gain about 16 lbs after not gaining for over two years.

Thanks for the response. Just feels like we have been going in circles since last Sept and haven't stopped.

 

[Tesscorm]

MLP,

It seems like Stephen is one of the few 'children' (not really a child at 18...) who has used 'maintenance' EN to any great extent. I know Crohnsinct's daughter and mom2oneboy's son (maybe Twiggy's son?) have used it together with meds but that seems to be it??? In Stephen's case, once used to attain remission, he has been on approx. 1/2 dose (with all foods) since last May and nothing else (except nexium). It's looking like it won't be enough to sustain remission but, perhaps, it can control symptoms enough to reduce the amount of meds needed. Has there ever been any discussion of adding maintenance EN to the methotrexate?

I don't really notice a 'huge' difference in the amount Stephen eats, however, it's hard to compare the quantity he eats now (with EN) to how much he ate 18 months ago when symptoms began (w/out EN). But, perhaps he is eating less than what he would normally be eating without EN and, perhaps, the smaller quantity of regular food being digested is putting less strain on his intestines, thereby maintaining a degree of 'bowel rest'. Did that make sense?

Although his inflammation markers have been moving up since the Fall, his other EIMs have never reappeared - sore back, canker sores, night sweats, fatigue... He has only had a few random episodes lasting a few days where he feels 'off' and will have looser BMs or some of constipation (and some fissure issues) and less of an appetite - but these have all disappeared with only minor intervention.

Just a thought...

 

[my little penguin]

Thanks- Tess-
Good thought- however
He has never stopped the Peptamen Jr. He just reduced.
He has 3 a day (750 Calories so about half dose) since he restarted food in March.
Otherwise his weight drops like a rock.
He drinks it all orally even when it was EEN and he had to drink 7 a day.

 

[Tesscorm]

Poor kid, I hope the second opinion GI is able to offer some suggestions! Do you have an apptmt yet?

 

[Sascot]

Sorry to hear he's not getting much better. Hopefully the docs will come up with a better plan - two heads being better than one and all that!!
It is frustrating doing the waiting game - alot of the meds seem to take a couple months to even start working. Makes it a long time for remission if it doesn't work and you have to wait for the next one to start working. Sending warm wishes your way!

 

[DustyKat]

In our house remission is being free of symptoms. Matt was a more classic presentation of Crohn's, but in many ways I think that was only due to Sarah's legacy so they honed in on him super quick, and Sarah was not, although neither had diarrhoea as a symptom.

Your little guy is not in remission mlp and I so hope the second GI is able to provide you with a solid treatment plan to get your son into remission ASAP, bless him...:hug:...and you too!

When it comes to EIM's just be aware that not all of them parallel disease activity but rather can act independently of it, so there is the potential for them not to be a reliable indicator of remission. EIM's that can run independently of disease activity include:

Ankylosing Spondyilitis
Sacroilitis
Primary Sclerosing Cholangitis
Uveitis

Good luck hun, you are both in my thoughts.

Dusty. xxx

 

[my little penguin]

My real issue is by all objective signs . He should be fine.
But isn't .
Scope in June was visually red everywhere top to bottom but biopsies were normal. Blood work normal. Calopectin test normal.
Gi wanted a capsule endo but insurance won't budge since the thought is it would show something.
I guess my fear is we are over treating and not getting anywhere since his other "stuff" could be caused by something else. Unknown at this point. Since with his past history we were looking for EoE when we found Ibd . If he was typical it would be easier blood levels were up , D or true blood . Since he takes asacol I know some of that may be just the tablets- kinda of hard for an 8 year old to tell the difference.
Hope to hear from the 2 nd opinion Gi office next week I still have to talk to their nurse first before the team finishes its review.
Thanks for letting me vent