Izzi's losing weight...:(
- Thread starter izzi'smom
- Start date
Help Support Crohn's Disease Forum:
Crohn's Mom
Moderator
- Joined
- Mar 9, 2011
- Messages
- 2,288
I'm so sorry to hear that Angie 
I'm glad you're on the ball and seeing the GI in the morning tho...
hang in there momma !
big hugs!
~T~
I'm glad you're on the ball and seeing the GI in the morning tho...
hang in there momma !
big hugs!
~T~
- Joined
- May 23, 2011
- Messages
- 1,535
Just returned from our local GI.
HE says the NG/enteral feeding *might* work in conjunction with the Remicade and is worth a try. We will also up her dose of Remi and schedule one week sooner (7 instead of 8 weeks) to see if it helps. In the meantime she will go back on Prednisilone today to try and curb the weight loss (if she loses any more she will need to be hospitalized).
I need to again discuss the ng with her dad...I think I'd like to sleep on it. Decisions, decisions.
If this DOESN'T work he will send us to Boston to try Tacrolimus and discuss surgical options next. (While there are peds surgeons here none are familiar enough with IBD in his opinion to be caring for her here).
HE says the NG/enteral feeding *might* work in conjunction with the Remicade and is worth a try. We will also up her dose of Remi and schedule one week sooner (7 instead of 8 weeks) to see if it helps. In the meantime she will go back on Prednisilone today to try and curb the weight loss (if she loses any more she will need to be hospitalized).
I need to again discuss the ng with her dad...I think I'd like to sleep on it. Decisions, decisions.
If this DOESN'T work he will send us to Boston to try Tacrolimus and discuss surgical options next. (While there are peds surgeons here none are familiar enough with IBD in his opinion to be caring for her here).
- Joined
- Jun 14, 2011
- Messages
- 6,449
To curb the weight loss, can she have any of the nutritional shakes along with her regular diet? (before the enteral diet, if you attempt it...) Just to boost her calories a bit...
I hope that the increase in the remicade does the trick and that surgery is not needed at all!!
I hope that the increase in the remicade does the trick and that surgery is not needed at all!!
- Joined
- May 23, 2011
- Messages
- 1,535
She will drink them if I force her...but pukes them up.
We were supposed to call if she lost any more weight to be admitted and she lost a pound (55#9oz last night to 54#9oz this am). I called at 8:15 this am and JUST heard back 4 hours later...ARGH! They will call when they have a bed. Of all of the ridiculous... I feel like if she is sick enough to be admitted, GET ON IT! She is actually doing better this pm (I sent her to school, she is eating and has energy) and I don't think I am going to take her. I feel like the ONLY thing they do is IV fluids, and if she is eating and drinking now...what is the point?! Hate these decisions...
We were supposed to call if she lost any more weight to be admitted and she lost a pound (55#9oz last night to 54#9oz this am). I called at 8:15 this am and JUST heard back 4 hours later...ARGH! They will call when they have a bed. Of all of the ridiculous... I feel like if she is sick enough to be admitted, GET ON IT! She is actually doing better this pm (I sent her to school, she is eating and has energy) and I don't think I am going to take her. I feel like the ONLY thing they do is IV fluids, and if she is eating and drinking now...what is the point?! Hate these decisions...
- Joined
- Jan 13, 2011
- Messages
- 1,008
That's a lot of weight to lose for such a little girl! Her weight sounds great for her age, though! She's 4 and weighs 54 pounds? My healthy 4yo weighs 35 and the 5yo weighs 34. But losing that much weight is definitely not good. I hope they can help her in the hospital.
- Joined
- Jun 14, 2011
- Messages
- 6,449
Completely agree re the 'decisions' ! Since my son was diagnosed, there have been many times I feel that I'm been asked to make decisions about things that I am totally unqualified, uninformed and unprepared to make! But, all we can do is make the best decisions we can!
Re the shakes... she doesn't like even the Carnation Breakfast? When my kids were younger, they both liked these shakes. I used to gave it to them just as a nutritional boost a couple of times per week. Can she have milk? As the shakes were a bit thick (or heavy), I would sometimes dilute them with milk... Maybe that would make it a bit easier for her. (Or frozen like a popsicle??)
P.S. I always bought the Carnation Breakfast already prepared in the can(not the powder), so when I say I diluted with milk, I mean I diluted the already prepared drink with 'more' milk...
Re the shakes... she doesn't like even the Carnation Breakfast? When my kids were younger, they both liked these shakes. I used to gave it to them just as a nutritional boost a couple of times per week. Can she have milk? As the shakes were a bit thick (or heavy), I would sometimes dilute them with milk... Maybe that would make it a bit easier for her. (Or frozen like a popsicle??)
P.S. I always bought the Carnation Breakfast already prepared in the can(not the powder), so when I say I diluted with milk, I mean I diluted the already prepared drink with 'more' milk...
- Joined
- May 23, 2011
- Messages
- 1,535
She actually was 63#...she has always been 95th percentile height and weight. (She'll be 5 in two months).
Her dad and I decided to keep her home tonight, but I am weighing her a few times a day.
Good thought on the premixed Carnation...the powders are never as good...I will see if I can find some. I gave her a milkshake yesterday (to bribe her to eat) but I think it makes her Crohn's worse...can't win lol!
Her dad and I decided to keep her home tonight, but I am weighing her a few times a day.
Good thought on the premixed Carnation...the powders are never as good...I will see if I can find some.
I gave her a milkshake yesterday (to bribe her to eat) but I think it makes her Crohn's worse...can't win lol!- Joined
- Sep 28, 2011
- Messages
- 22
I've been reading your thread. My heart goes out to you and all the parents/supporters of Chron's/IBD patients. I was diagnosed with Crohn's a couple of months ago and have a difficut time making decisions for myself. I can't imagine having to make the same decisions for a child. When your children are sick, the support and care you provide means so much. Keep up the great work!
- Joined
- Aug 28, 2011
- Messages
- 3,376
Sorry to hear you are having such problems. I definately think it is worth having the enteral nutrition. Most children in Scotland get put on it for 8 weeks (apparently it works in 2/3 weeks but if the 8 weeks ensures the Crohns remains in remission for longer).
My son couldn't stand the taste and has had his NG tube in for 7 weeks so far (nearly there!!!). After a few days he didn't notice it anymore and he goes to school and sports with it in. Only thing he cannot do is swimming.
I know there are alot of nutritional drinks but the one we have here commonly is the Modulin which has all the nutrients in it as well as an anti-inflammatory agent to heal any ulcers, etc.
Good luck!
My son couldn't stand the taste and has had his NG tube in for 7 weeks so far (nearly there!!!). After a few days he didn't notice it anymore and he goes to school and sports with it in. Only thing he cannot do is swimming.
I know there are alot of nutritional drinks but the one we have here commonly is the Modulin which has all the nutrients in it as well as an anti-inflammatory agent to heal any ulcers, etc.
Good luck!
