Update

[Sascot]

We had the GI appointment today - took Andrew and Amy. He is happy enough with Andrew - still metioning 6mp but I managed to delay until we have the MRI, which will probably be at least 4 weeks away . Weird thing though - he mentioned the liver function being high as a possible concern (even though it is coming down) - said that liver inflammation can be a EIM. However, it was perfectly fine until he started the Aza, so surely it was just a reaction to the meds.
As for Amy, he has no idea what it is, but has prescribed her Movicol to get her bowels more regular (even though I told him it didn't help a few years ago :ybatty. She's to take that for 6 weeks while filling in a poo chart - oh joy! Lucky me gets to check her poo every day :yrolleyes:#
He did say it could be coming from her spine so if the Movicol doesn't work then he will order an MRI. Also said it is possible - although unlikely - that it could be Crohn's. Apparently you can have Crohns with just rectal pain.

 

[kimmidwife]

my little one who we have been closely following because of some suspicion that she might have crohns complains of pain in her bottom sometimes. I keep checking but don't see anything. now your.post makes me say huh is this another possible sign of crohns?

 

[Tesscorm]

I guess it was an 'okay' apptmt, eh? At least the GI's happy to wait until the MRE do decide on Andrew's meds.

Is Andrew on EN supplementation? Just asking because Stephen's ALT and AST are elevated (have been slightly high since diagnosis but AST recently raised) but, disregarding the recent increase, his GI believe the slight elevation since last year can be caused by EN. His ALT ranged from 55 to 75 (recently jumped up to 100) and his AST, 38 to 60. Both his ped GI and GP feel these levels are worth 'watching' but not really worrisome yet. Not sure how they compare to Andrew's levels.

At least they are now watching Amy and you can, hopefully, get an answer soon... :ghug:

 

[Sascot]

Andrew isn't on any EN supplements. He truly couldn't stand the taste of any of them - he had to have the NG tube for the 8 week exclusive period, so we couldn't use it as a supplement unfortunately.

 

[Tesscorm]

Yes..., I remember now... he wore the NG tube to high school, right?

Did he have a hard time having the tube inserted? Did he ever try to do it himself? Just asking because Stephen is still on maintenance EN (exclusive May '11 to July '11 and maintenance since) but he inserts the tube nightly and removes in the morning.

No doubt Stephen would agree with Andrew on the taste! I am going to 'try' some shakes with Stephen, only for the convenience on vacations. I am going to take our usual formula, pump, blender, bags, etc. :lol: when we go on the cruise, however, there is absolutely NO WAY Stephen would deal with all that when he goes on his belated 'grad' trip in June '13. Assuming he's still on EN, am hoping he will, at least, drink the shakes. :blush:

 

[crohnsinct]

Hey Tess, I know it isn't the formula he is on and not as readily absorbable and all that other stuff but could you try Boost and Ensure just for the trip? From what I hear they taste a heck of a lot better and that is what O used all 8 weeks and it worked.

 

[Tesscorm]

Yes, that what I'm thinking... for the cruise, I'll just do the NG, pump, etc. - not that big a deal for me and, in reality, less of a deal for him as I won't have to hound him to drink the shakes during the day.

When he has his grad trip, I will probably send him Ensure or Boost. I have a can of Modulen at home that he can try but, from what I've read here, I'm not too hopeful and, while it's drinkable, it's still in powder form and needs to be mixed (at least the sample I have...) I'll try to find Peptamin (closer to his current EN formulation) or the ones mentioned somewhere here that tasted more like a juice??? But, my 'fall back' will be the Boost/Ensure shakes.

If it wasn't a 'grad trip' where he will be on his own, eating junk and having some drinks, I might be tempted to just skip the shakes for a week BUT... knowing what happens on grad trips, even as responsible as he is, I think that's the week he'll need the shakes more than ever! :lol:

 

[DustyKat]

Thanks for the update Sascot.

I hope Andrews liver function tests continue to decrease. How is Amy doing with the chart and the Movicol?

Dusty. xxx

 

[Sascot]

Andrew still seems to be doing well. They havent' asked for any more blood tests and I am not going to ask them . Just waiting to hear when the MRI might be.
Amy is doing ok, although had a stinker of a cold/cough last week and the weekend. Thankfully back at school now! She can't stand the Movicol - drinks it with a sweet in her hand ready to eat afterwards :lol:. Poo chart doing alright, although she never did one yesterday.

 

[Farmwife]

So happy to hear you got some answers. I hope all works out well.