Is it Mono or Crohns?

[my little penguin]

Glad you are getting the scope quick
Even though i know waiting until Tuesday is still hard.
Glad you have a plan at least.
Hugs

 

[Sascot]

That's good that he's going to do the scopes on Tuesday! Hope it all goes well.

 

[Tesscorm]

Glad he's scheduling the scopes so quickly! :thumright: Hope you get answers soon! :ghug:

 

[Jmrogers4]

Thanks everyone, I feel better just know we are moving forward. Didn't talk to much about supplemental EN but put it on the back burner till after we see what we are dealing with. I think I'm okay with that. Miralax prep, we haven't done that one before so I'm going to read up on the prep threads.

 

[Tesscorm]

Not sure if you've used the Pico-Salax before but it's what Stephen recently used and he had a really easy time of it... Had to drink two sachets with water, I bought the orange flavour and he said it tasted fine. I also put him on a low residue diet for a 3 or 4 days before (pretty much all his favourite foods anyway! LOL) and then the last day of eating, he ate really light (broth, a little chicken) and supplemented with Boost to alleviate any hunger (and then the next day no food was allowed). I don't know if any of this helped but this recent scope prep was 100% easier than his first one.

Just curious, perhaps I'm wrong but wasn't Jack doing well on azathioprine before? Did GI say why he might move to remicade instead of going back to aza?

 

[Jmrogers4]

He was doing okay on aza, again we just never saw the growth/weight gain like we expected to, pretty much the same as now. No abdominal pains, no diarrhea, no blood in stool, so he is thinking it wasn't getting him over that final hurdle. When he was first dx'd he weighed 60lbs after loosing 12 lbs in about a month. He gained the 12lbs back after the first few months on pred and aza. That was 3 years ago so at 77lbs now even on the rare occasions when the scale has read 80lbs a weight gain of 7-8lbs over a 3 year period just isn't what the GI wants to see (Really? I can gain about 7lbs in a month, geez). I was a little frustrated at that as I've always said shouldn't he be gaining more weight. But he always looked good and didn't complain of any symptoms and laughs and jokes with his Dr. so it was always a kind of well he just needs to eat more and next time if he hasn't gained any weight we'll do this....
Sorry for my little rant but I finally feel like they are taking his lack of weight gain a little more seriously

 

[Aniuko]

Jacqui, souds very much like Kasia's case right before she got Remicade added to her MTX. No real symptoms but no much weight gain, not very good blood results (but not all of them). I am happy that you have some answers and glad that it makes you feel better! Now it will be all better!

For me, not a good day, Kasia sprained her ankle really badly (snowboarding), has crutches and spent two hours at the ER - I love that place :-(!

 

[Jmrogers4]

Well at least it was for a sprained ankle, no fun but heals pretty quick. Hope her ankle feels better soon, crutches are no fun. Jack always thought crutches were pretty cool until he broke his foot the year before and had to use them, then not so much found out they are pretty easy when you can put your foot down at anytime but when you actually need them they are kind of a pain

 

[Tesscorm]

It is frustrating when you've been asking about an issue and have been shrugged off and then suddenly, they realize 'oh yeah, we should look at that'! :ybatty: But, you're right, at least, they are taking it more seriously now! :ghug:

I think weight gain, or lack of, is such a big indicator! I don't understand why it sometimes isn't looked at more closely??? After three months on EN (6 wks exclusive and then maintenance), Stephen gained back the 25 lbs he'd lost plus another 5-6 pounds but then stopped there. He's not underweight at all, so that's not my concern, but I've always wondered why he hasn't gained more considering he eats a pretty normal diet PLUS has 1500 cal/night (5x per wk). I've always questioned if it wasn't the inflammation limiting some of his absorption??? He's recently gained another 10-12 lbs but that was after a year on maintenance (with no change) and came as a spurt, not a gradual increase??? But his ped GI didn't think it was an issue...

(Really? I can gain about 7lbs in a month, geez).

I'm right there with you! :lol:

 

[my little penguin]

Kids past age 2 put on weight in spurts so nothing for 8 months then bamm 10 lbs.
which is why docs tend to look over an entire years time not just a few months.
I know lack of weight gain was DS first indicator which no one but our Gi took seriously not even the ped ( some kids are just skinny we were told grrrr.. )
I would still push the en even as a supplement since I know its a safety net for DS when he has an off day plus these kids can lose 10 lbs without thinking even with a normal kid bug .

Good luck

 

[Dexky]

Hope the prep and the scope go well for Jack! Good luck Tuesday!

 

[CarolinAlaska]

Glad things are moving right along with the scheduling.

As heavy as my feet are, I'd be wondering why not EEN along with what he was just on before going to the big guns like Remi, but I'm that way, always dragging my feet and scared of every little side effect...

 

[Jmrogers4]

I think GI is feeling that we have been fighting this for 3 years and he I think just feels that we need to get everything under control and that maybe it never really has been, thus the Remi. EEN is not off the table I think we are waiting to see how much inflammation we are looking at and go from there with our options so not ruling anything out at this point.
Nearly got in a fight with the hubby last night as I was explaining everything the doctor said and he was what are we supposed to do in the next week, we need to do something now! I think he sometimes has a really hard time since he has Crohn's as well and knows what Jack is feeling, he always wants immediate problem fixing. So I think he is really pushing for if not EEN than at least supplemental no matter what. He will be at scopes so he can question the GI himself.

 

[CarolinAlaska]

I know how that goes. My hubby and I get short with each other too and take our frustraction out on each other as things get changed, prolonged, etc. I think it is harder for him because I am researching and getting more understanding while he is still back at the stage of wondering if he believes she really has Crohn's... Hugs to you both and to your dear son. When will they start the Remi? EN (supplemental) won't hurt anything if you can find one he can tolerate orally while you are waiting for a plan to get it going by tube feeding if the doc ever catches up with you on this...:heart:

 

[Jmrogers4]

We are sneaking ensure into nightly smoothies, he keeps saying what kind is this is tastes a little funny. Last night he flat out asked if we put Ensure in there, said he could taste it. I told him to get over it he has been drinking them for the past 4 nights. I put them in a cup with a lid and a straw so he can't smell it. So I'm thinking I'll keep increasing the amount of Ensure and decreasing the amount of smoothie and pretty soon he'll be able to drink one with bending over the sink rinsing his mouth out with every sip.
We've never tried to pass food off on them as something else, have always told them what it was and that they had to at least try a polite bite. But desperate times are calling for desperate measures... They will at least try anything at least once. In fact I came home a couple of weeks ago and my younger son and husband were sitting at the table eating udon noodles with octopus :ack: my husband looks at me says we were at the fish store and he wanted to see what octopus tastes like.

 

[CarolinAlaska]

:thumright::beerchug::emot-waycool:

 

[Farmwife]

They will at least try anything at least once. In fact I came home a couple of weeks ago and my younger son and husband were sitting at the table eating udon noodles with octopus :ack: my husband looks at me says we were at the fish store and he wanted to see what octopus tastes like.

COOL:thumright: and uke_r:

 

[Tesscorm]

I don't know if u hv a reason for Ensure vs Boost but, picky as Stephen can be, he doesn't mind chocolate Boost at all. I've bought the Boost Plus (with more calories) and Boost Protein. He drank some on the cruise and also for the scope prep. I hvnt tried Ensure but maybe there's a difference in taste??

 

[Jmrogers4]

We've tried both the Ensure just happened to be 5 cents cheaper. Jack does not like chocolate we usually buy the strawberry mix it with some strawberry ice cream a banana and some more frozen strawberries everybody else thinks it's pretty good, speaking of it's time to go make it.
Picking up the miralax tomorrow, he says he wants blue gatorade I told him I didn't think he could have that color anyone know?

 

[Farmwife]

I was told clear miralax for Grace.

 

[my little penguin]

Clear Gatorade comes in strawberry

 

[Clash]

Isn't there an ice blue gatorade that comes clear too?

 

[Clash]

Or maybe that should read isn't there a clear gatorade that is the ice blue flavor?

 

[my little penguin]

It's ice version

 

[Jmrogers4]

Thanks I'll look for the ice version of the blue flavor or the strawberry maybe one for morning and one for afternoon, we are not big gatorade drinkers they usually just prefer water

 

[my little penguin]

Strawberry - kiwi , watermelon something and punch are the ice flavors
No blue
They don't come in 2 qt only 6-8 pack little bottles

 

[Jmrogers4]

UGG! What about orange can he have orange?

 

[CarolinAlaska]

We've tried both the Ensure just happened to be 5 cents cheaper. Jack does not like chocolate we usually buy the strawberry mix it with some strawberry ice cream a banana and some more frozen strawberries everybody else thinks it's pretty good, speaking of it's time to go make it.
Picking up the miralax tomorrow, he says he wants blue gatorade I told him I didn't think he could have that color anyone know?

Jae could only have green or yellow... I don't know why not blue... She had a lot of green D. It was not an appetizing color. I guess better than red, eh?

 

[Jenn]

Blue and orange ok, just not red. Probably not purple (since it's red and blue). At least, the nurse told us for Alex. I love the Gatorade Ice Punch flavor, it's clear.

 

[my little penguin]

Depends on the Gi
We were told only pale yellow
No blue red purple green or orange
The doc needs to be able to see the skin through it.
Pedialyte makes a clear apple or cherry juice
Kool aid makes invisible Kool aid ( clear ) lemonade or cherry .
Good luck
Your prep instructions should have the preferred colors
We just used Gatorade ice fruit punch

 

[Jmrogers4]

prep instructions just say light colored gatorade. Found a clear cherry flavor powerade he is going to taste and see if he likes.

 

[Dexky]

Ask ten different GI's, get ten different answers!! Is it just a one night prep J? I hope so!

 

[Jmrogers4]

Just finished mixing up the prep to start tomorrow morning. Getting ready to eat dinner and he can have his ensure shake tonight by 8 then clear liquids, chicken broth until 6am on Tuesday (although I imagine he will not be having anything on Tuesday morning as we have to be at the hospital by 6:30am)
He did compete in his snowboard race yesterday, time was 4 seconds slower than last race and he came home and slept for 5 1/2 hours! I'm so ready to figure out what is going on and get him feeling well again

 

[Clash]

I hope prep day goes smoothly and you get answers. I think the sleeping long hours worries me more with C than some of the other symptoms, just because I am used to him being so active. Hugs and support!!