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10-17-2011, 10:32 PM   #1
izzi'smom
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Izzi's losing weight...:(

We don't normally have this problem but she is down 7# in 3 weeks She also vomited three times today, which is new for her. Am meeting with her local GI already tomorrow to discuss our next step but am so sad for her.
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
10-17-2011, 10:44 PM   #2
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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~
10-18-2011, 05:02 AM   #3
Dexky
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Sorry Angie! I hope the GI visit is productive. It doesn't seem the Remi is gonna be her magic bullet. Time to move on maybe. Good luck and let us know!
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10-18-2011, 06:16 AM   #4
DustyKat
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...to you and Izzi.

I hope the GI's visit goes well Angie, you will be in my thoughts and prayers.

Dusty.
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10-18-2011, 07:17 AM   #5
izzi'smom
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Thanks guys...and sorry...should have put this in venting (and gotten some sleep before coming on here to complain lol) I'm sure we will figure something out
10-18-2011, 08:01 AM   #6
Tesscorm
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I hope she's feeling a little better today. Good luck at the GI.

Are you still trying the NG tube and enteral diet? From your other post, it seemed that you and the GI decided it probably wouldn't help.
10-18-2011, 01:36 PM   #7
izzi'smom
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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).
10-18-2011, 01:55 PM   #8
Tesscorm
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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!!
10-19-2011, 11:37 AM   #9
izzi'smom
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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...
10-19-2011, 11:47 AM   #10
chrisnsteph1022
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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.
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10-19-2011, 12:54 PM   #11
Tesscorm
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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...
10-19-2011, 04:27 PM   #12
izzi'smom
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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!
10-20-2011, 12:48 PM   #13
upstateNYgirl
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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!
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10-20-2011, 04:38 PM   #14
Sascot
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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!
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