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07-06-2012, 01:51 PM   #1
JSchneider
 
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TPN feeding

Emily has not been doing well, in the last 3 weeks we've been in/out of hospital twice. The first time they rescoped her to find her Crohn's is worse plus it's moved into her stomach. We were sent home w/ a steroid enema but put back in a week later b/c it wasn't making any difference. She's unable to eat and lost 6 lbs. in 3 weeks. Monday they placed a picc line and sent us home Thursday to do her TPN at home. I don't know about the rest of you, but I've been exposed to SO much I think I'd pass nursing school w/ flying colors!
She's been on her TPN since Monday, it's Friday, and she keeps crying that she's hungry. I've told the doctors several times and they say it's just part of the process. Any tricks to helping them? I tried to get her to drink water, but she's so sad. We don't eat in front of her and I've stocked the family w/ sandwiches so I wont be cooking. It's so hard to watch her suffer, this breaks my heart!
I've never dealt w/ cancer, but I think I understand their slogan "Cancer Sucks" b/c I feel the same way about Crohn's!
07-06-2012, 02:06 PM   #2
Tesscorm
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I'm so sorry to read about your daughter (I also read your post in My Story). It's just terrible to see your child suffer and not be able to fix the problem.

My son did EN for six weeks but it is a bit different in that he was, to a degree, filling his stomach and alleviating some of the hunger. He is also a few years older.

Is she allowed ANYTHING?? My son was allowed clear fluids such as broth, jello, freezies, hard candies... that helped a bit. Is she allowed flavoured teas? But, I think the biggest help was distraction, although not easy to constantly distract a child.

How much longer will she be on TPN?

Wish I could have offered better suggestions! Good luck, I hope she will begin to feel better soon!
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May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
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07-06-2012, 04:38 PM   #3
JSchneider
 
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She's not allowed anything by mouth. Next Thursday she goes back to her GI and hopefully then he will let her have some broth. She's really hoping he says yes to that! I'm also sorry to hear about your son, it's so nice to read/talk to other parents going thru this too. We are not sure how long she'll be doing this, but they are guess at least 1 month. I did get her some sugar free gum to chew, that seems to be helping relieve that feeling of hunger. She's on an 18 hour continuous feed and I thought for sure by now she'd feel less hungry. Thanks for your words and sharing your story with me, it really does help a lot!
07-06-2012, 04:41 PM   #4
my little penguin
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SOme TPN kids like a plate to "smell"- I know it seems cruel but you let them smell a plate of their favorite foods then they can at least remember but since she may get off TPN soon - this may not be needed.
07-06-2012, 08:43 PM   #5
crohnsinct
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Sorry not much advise. When O was on TPN she was pretty bad off and in patient...she didn't have the energy to think about eating. See was on exclusive EN for 6 weeks and the gum trick and distraction worked for her. I hope things brighten up for you all soon.
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Vitaligo, Precoscious puberty & Crohns
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07-07-2012, 04:01 AM   #6
Sascot
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Sorry to hear about your daughter! I have never dealt with a picc line, my son did the exclusive EN but had the NG tube. It did seem to fill him up and he was allowed sugar free chewing gum and 7up (weird I know). He really used to look forward to his glass of 7up!!
Hope she feels better soon and the doctor allows something for her to eat or drink.
07-07-2012, 04:41 AM   #7
DustyKat
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I am so sorry to hear about Emily, poor love...

Do you know why they bypassed EN and went straight to TPN?

Dusty. xxx
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07-07-2012, 08:12 AM   #8
dannysmom
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Hi. I am sorry about your daughter. We've never done TPN (or EN for that matter) but I did notice other TPN threads and thought maybe they would have some tricks for the hunger:

http://www.crohnsforum.com/showthread.php?t=37402

I hope she feels better soon.
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07-07-2012, 09:40 AM   #9
JSchneider
 
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I am so sorry to hear about Emily, poor love...

Do you know why they bypassed EN and went straight to TPN?

Dusty. xxx
Thanks so much for all the support! It's so nice to hear your stories and how your children have made it thru this~although I hate any child had to endure any of this.
I think her dr. chose TPN for several reasons: no matter what she would eat she would immediately be in the bathroom, she stopped eating b/c of the pain it would cause then and later on, and her Crohn's has been getting worse since January-he thinks resting the bowels will help them heal and then the medication can do their job.
He says in Europe this is a very common treatment they do instead of the medications the doctors do here in the States.
*the gum seemed to help her out a lot-just hope I'm not breaking any rules
07-07-2012, 09:57 AM   #10
JSchneider
 
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Hi. I am sorry about your daughter. We've never done TPN (or EN for that matter) but I did notice other TPN threads and thought maybe they would have some tricks for the hunger:

http://www.crohnsforum.com/showthread.php?t=37402

I hope she feels better soon.
Thanks so much for that link!
07-11-2012, 09:43 AM   #11
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Good News~ Last night Emilys dr called & said she could eat! Hooray‼ She's allowed chicken, turkey, and potatoes. I've got a chicken baking in the oven now and will make her some mashed potatoes to go w/ it. She's asked that I let her have some of the broth for a gravy substitute
She's been losing 2-6 ounces a day while on her TPN so we are SO thankful for this news. Also her Hemoglobin is up to 10.8 (that's .3 higher than last week) her Albumin is at a 4 (highest it's been all year) and her inflammation markers are almost non-exsistent! Thank God for all of this wonderful news! We are so thankful for all the prayers and kind words of support from everyone.
07-11-2012, 10:31 AM   #12
crohnsinct
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That's Wonderful!!! Nothing like adding some foods to cheer a girl up. I hope things continue on the upswing for you all!
07-11-2012, 12:41 PM   #13
dannysmom
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Thanks for sharing the good news. Baked chicken and potatoes are Danny's "safest" foods.
07-11-2012, 01:08 PM   #14
Tesscorm
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Be sure Emily's GI keeps EN on the radar! He's right in that it is not as commonly used in the US as it is the rest of the world but it's not just for bowel rest. When used for a longer period (not sure how long Emily was already on TPN ) it has comparable success rates at inducing remission as steroids while ALSO providing nutrition, anti-inflammatory properties and bowel rest. My understanding is that TPN does not always have the same success rate at inducing remission.

I'm sure after being on TPN, she would not like to even think about EN but, maybe just something to keep in mind for the future...

But, I'm happy she can eat some food now!!! Everything tasted amazing for my son when his six weeks ended!
07-11-2012, 01:24 PM   #15
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Dannysmom: I'm just glad the kids like chicken and potatoes~ my husband,on the other hand, is tired of it! Ha!
Tesscorm, I think one of the other reasons he didn't do EN was Emily has issues w/ texture/taste- she also has Asperger's and for some reason texture/taste things can throw a wrench into her life and cause her to shut down completely. He was afraid we'd spend days fighting her to drink the EN and not get much in her and that wouldn't help her either. Tomorrow we go for a 10 day check to see what he has lined up for her, this being our first time I'm not sure what the normal amount of time is.
Thanks so much for sharing w/ me- I appreciate all the advice, wisdom, insight, and laughs I can get~
07-14-2012, 03:54 AM   #16
DustyKat
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@JSchneider...How did the check go? I hope all is going well with the reintroduction of food.

Thinking of you guys,
Dusty. xxx
07-14-2012, 09:34 AM   #17
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[QUOTE=DustyKat;473347]@JSchneider...How did the check go? I hope all is going well with the reintroduction of food.

Thinking of you guys,
Dusty. xxx[/QUOTE

It didn't go well, sorry I didn't get on a post yesterday-I'm sure you all understand how things can turn south fast! Thursday morning was horrible! She was throwing up and had diarrhea~ so imagine the fun we had on our 2 hour trip trying to get her to the doctor w/ all that going on! Her dr was not pleased with the attendings RX on her TPN, she is not getting the calories he wants her to have so he called in a new order (we'll get it Tuesday). His hope is that giving her more calories will help subside her hunger plus help her put on the weight, she was losing 2-6 ounces a day. Once she starts the new TPN and she's not hungry we will stop feeding her by mouth again, until then we have to feed her b/c she's starving. Double-edged sword, but it's all we can do for now. Her blood work looks a lot better tho, her Albumin levels were at 3.7- they were 4 on Monday, that's the highest she's been all year! Plus the inflammation markers were at a 24, they haven't been that low all year either. The TPN and bowel rest seems to be the treatment she needs to get her better. She'll go back on the 27th to see him again-he's on vacation next week and he has a lot of great drs that could see her sooner, but he wants to be the one who takes care of her.
She's really upset and down about not eating and we're trying our best to make her understand it's not forever but as you all know in a childs mind a few weeks might as well be a year!
07-14-2012, 11:21 PM   #18
izzi'smom
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thinking of you and hoping tomorrow is better!! Glad to hear the inflammation markers are coming down...hoping the new tpn levels do the trick!!
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07-15-2012, 06:23 AM   #19
DustyKat
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Thanks for the update hun.

I so hope the new TPN regime does the trick for her, poor love, what a trooper she is!

It is good to hear the blood numbers are improving.

Sending you loads of love, luck and well wishes!

Dusty. xxx
07-16-2012, 01:36 PM   #20
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Last night I noticed some slight swelling on her left arm, front side where her arm pit and chest come together. She was complaining of pain in that area and numbness under her arm. It was very slight and her nurse was coming this morning so I just watched her thru the night. This morning the swelling moved to her left breast, not the entire breast almost a C shape around her left breast-from the chest back in. Her nurse called the dr. office to tell them what she saw and how I notice only the arm pit/chest area. It's 1:30pm I just checked her and now there are spider veins popping up around the swelling and it feels a little stiff to touch. Called the dr. office again, left a message. UGH~ I know we aren't the only patients, but do you ever feel like your emergency should be theirs? It's a 2 hour drive for me to get her to OKC hospital, we have hospitals closer but her dr is not authorized to make orders at those. PRAYING someone calls back soon! Home nurse said don't start TPN until we hear something...much longer and I'm going to start driving!
07-16-2012, 01:49 PM   #21
crohnsinct
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Oh my gosh I could only imagine your distress. I would be in the car soon myself. I hope they call real soon! But it is situations like yours that remind me of why I am not getting my call back. Thanks
07-16-2012, 01:53 PM   #22
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Oh my gosh I could only imagine your distress. I would be in the car soon myself. I hope they call real soon! But it is situations like yours that remind me of why I am not getting my call back. Thanks
It's so rare for me to feel panicked like this~I know they are so busy w/ other patients and I try really hard to wait, but my insides have been screaming at me since I noticed this last night. I should listen to myself and just leave. I may call her PCP and see if he could just look at her real quick.
07-16-2012, 02:02 PM   #23
crohnsinct
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That's not a bad idea. They could look at it and give you an educated opinion of whether or not you should start driving.
07-16-2012, 02:04 PM   #24
crohnsinct
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and you are not panicking...this is your child and there is a tube inside her body..you are concerned and just want a call back. We aren't medical professionals and have no experience with these things...it makes total sense to be concerned especially since the nurse even felt it warranted a call and a hold on the TPN...and can we add that that is another reason for them to push you up their list...she isn't getting her nutrition while you sit around and wait for a call.
07-16-2012, 02:11 PM   #25
Mom2oneboy
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How worrisome for all of you! I would call their office and demand to talk to the nurse right away. It IS an emergency situation! If they aren't responsive then I would head to the ER. When I read things like this it makes me so grateful that we have a doctor that I can text directly. I know the nurses are busy and overworked but it's not fair to stress a family out like this. I'm so sorry you all are having to deal with this especially your sweet daughter.
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Methotrexate 6/6/12
Remicade 09/30/12

Life is not about waiting for the storms to pass...It's about learning to dance in the rain.
07-16-2012, 03:14 PM   #26
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Her PCP saw her and said it doesn't look or act like it's infected and as far a leaking he said she would feel some type of pain. He told me to hook her up to her TPN at 5, as usual, and watch-he lives down the road from us and told me to call him at home if things changed and he'd come to check her. I'm thankful he is so close, but I'm also still a bit worried b/c if it's not an infection or leak then why is this happening?! Still no word from the specialist~very disappointed b/c I love her gastro dr. Picc lines freak me out anyway~ UGH, praying for an uneventful night...and that this just somehow goes away! Geesh
07-16-2012, 03:49 PM   #27
crohnsinct
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WOW! How nice to have your personal on call doc so close. I am glad he took a look. Yeah it would still concern me but it could just be swelling due to having something foreign in the body. I wouldn't worry as you have your pcp so close and willing to rescue you.

I know what you mean about the loving your GI and the no call back thing. Mine recently did that to me twice but it wasn't an emergency situation. Still love him just a bit annoyed.
07-16-2012, 07:37 PM   #28
dannysmom
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Good luck tonight! (I too wonder what it is)
07-16-2012, 07:48 PM   #29
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I hope all goes well tonight.
I'll have to make sure to check in tomorrow to see how it went.

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07-16-2012, 10:35 PM   #30
izzi'smom
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glad you got ahold of her pcp...and hoping it goes away...*fingers crossed*!
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