NG-tube is out!

[pdx]

My daughter's NG-tube is out! She is so happy to have it gone. I'm happy for her too, but also hoping that her symptoms don't come back now that she's back on full-time food. She gained 15 pounds over the 10 weeks that the tube was in--from 70 to 85 pounds--a 20% increase! She's still skinny, but she looks so much healthier now. I'm pretty sure she's grown a little in height too. We'll check that officially on Friday when she goes in for her next Remicade infusion.

 

[my little penguin]

Woohoo!!!
So glad the NG tube worked
DS is currently EEN again ( orally no tube ) plus pred
That weight gain is awesome

 

[pdx]

How long has your son been back on EEN and pred, MLP? Is it helping?

 

[my little penguin]

EEN for a week due to something irritating his Gi tract all crohns tests look good - possible food intolerance or other non Ibd issue ( scopes/MrE/fc /bloodwork all clean)
Gut pain is improving ..,
Pred is for arthritis flare up ( knees , wrists , hands , neck and back involved )
started iv steriods Thursday in the ER per Rheumo and switched to oral friday
Major improvement in his joints by Saturday
Just need a future plan on Monday - prior to this only his hands had arthritis

 

[Maya142]

:dusty::dusty:
Great news! Can you get her to drink a shake or two to keep her weight up? That's what we did with my daughter. She didn't like the shakes (Peptamen Jr) but got used to them.

 

[CarolinAlaska]

Wonderful! EEN is difficult and I hope you were able to celebrate her achievements.

 

[crohnsinct]

Second Maya's suggestion. There are studies that support supplemental en once you achieve clinical remission as a way of extending the amount of time you stay in remission. Pretty sure there are studies on it's use specifically with the biologics as well stating the same thing...increases the time they remain effective.

 

[my little penguin]

Yep DS has been on supplemental en with his meds for the past three years.
That made switching back to EEN sooooo much easier

 

[pdx]

Thanks, everyone. For those who have done supplemental EN, would you recommend continuing with Peptamen (the flavored kind, I assume), or using something like Ensure? I also have almost a case of unflavored Peptamen left. Could I blend it with something tastier, and use that?

Also, did your insurance cover supplemental EN?

 

[my little penguin]

We used the flavored peptamen jr with prebio
But that was what he was on EEN orally the first time .
In DS case they do cover it when insurance through the durable medical equipment clause .

 

[Maya142]

We used Peptamen Jr and then Neocate but that's only because my daughter has trouble tolerating Ensure. She thought Ensure tasted MUCH better.

Unflavored Peptamen - we used to add chocolate syrup most of the time. She also liked strawberry syrup. Good luck!!

 

[CarolinAlaska]

Thanks, everyone. For those who have done supplemental EN, would you recommend continuing with Peptamen (the flavored kind, I assume), or using something like Ensure? I also have almost a case of unflavored Peptamen left. Could I blend it with something tastier, and use that?

Also, did your insurance cover supplemental EN?

Our insurance covered it after NG tube because we never stopped ordering it. They didn't ask if we still used the tube or not. They probably wouldn't have covered it otherwise. As for drinking it, she went to 1/2 peptamen/ 1/2 Ensure in order for it to be sufficiently palatable. At first she couldn't tolerate Ensure alone (GI-wise). Now she can. We would mix the two cans in a tall glass with a lid and straw. The lid would help her to be able to drink it without smelling it.

 

[Tesscorm]

I once posted a study in the parents' research section discussing the increased success rate of remicade with supplemental EN was used. If I remember correctly, the average calories ingested, which showed the greatest remicade success was 1200 cal per day.

Once S stopped using the formula through NG tube (after starting remicade), he switched over to one to two Boost shakes per day. Doesn't give him the 1200 calories which the study indicated had the best success rate but I figure 250-500 calories from Boost is better than nothing.

My insurance would not cover EN, supplemental or not. But a regional medical agency did cover it while it was prescribed by his GI.