# TPN feeding



## JSchneider (Jul 6, 2012)

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!
:sign0085:  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!


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## Tesscorm (Jul 6, 2012)

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. :ymad:

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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## JSchneider (Jul 6, 2012)

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!


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## my little penguin (Jul 6, 2012)

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.


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## crohnsinct (Jul 6, 2012)

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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## Sascot (Jul 7, 2012)

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.


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## DustyKat (Jul 7, 2012)

I am so sorry to hear about Emily, poor love...:hug: 

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

Dusty. xxx


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## dannysmom (Jul 7, 2012)

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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## JSchneider (Jul 7, 2012)

DustyKat said:


> I am so sorry to hear about Emily, poor love...:hug:
> 
> 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 :shifty-t:


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## JSchneider (Jul 7, 2012)

dannysmom said:


> 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!


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## JSchneider (Jul 11, 2012)

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 :thumleft:
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.:dance:


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## crohnsinct (Jul 11, 2012)

That's Wonderful!!!  Nothing like adding some foods to cheer a girl up.  I hope things continue on the upswing for you all!


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## dannysmom (Jul 11, 2012)

Thanks for sharing the good news. Baked chicken and potatoes are Danny's "safest" foods.


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## Tesscorm (Jul 11, 2012)

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!


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## JSchneider (Jul 11, 2012)

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~


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## DustyKat (Jul 14, 2012)

@JSchneider...How did the check go? I hope all is going well with the reintroduction of food. :hug:

Thinking of you guys, :heart:
Dusty. xxx


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## JSchneider (Jul 14, 2012)

DustyKat said:


> @JSchneider...How did the check go? I hope all is going well with the reintroduction of food. :hug:
> 
> Thinking of you guys, :heart:
> Dusty. xxx[/QUOTE
> ...


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## izzi'smom (Jul 15, 2012)

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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## DustyKat (Jul 15, 2012)

Thanks for the update hun. :hug: 

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


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## JSchneider (Jul 16, 2012)

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!


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## crohnsinct (Jul 16, 2012)

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


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## JSchneider (Jul 16, 2012)

crohnsinct said:


> 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.


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## crohnsinct (Jul 16, 2012)

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.


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## crohnsinct (Jul 16, 2012)

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.


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## Mom2oneboy (Jul 16, 2012)

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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## JSchneider (Jul 16, 2012)

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


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## crohnsinct (Jul 16, 2012)

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.


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## dannysmom (Jul 16, 2012)

Good luck tonight!  (I too wonder what it is)


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## Farmwife (Jul 16, 2012)

I hope all goes well tonight. 
I'll have to make sure to check in tomorrow to see how it went.

Farmwife


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## izzi'smom (Jul 16, 2012)

glad you got ahold of her pcp...and hoping it goes away...*fingers crossed*!


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## DustyKat (Jul 17, 2012)

Did everything go okay overnight??? I hope so!!!

Thinking of you, :heart: 
Dusty. xxx


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## JSchneider (Jul 17, 2012)

Her GI's office called back at 10 till 5 last night and told me I needed to NOT start TPN and to get her to their ER (2 hours away).  They did one x-ray and an ultrasound and found she has a blood clot in her left arm, it's not the same vein that her TPN is in, but it's in the same area.  This morning the Hematologist and GI team are going to have a meeting of the minds to decide what they need to do.  It was a hard/long night, she had to have a shot in her stomach-not sure of the name, but it was a blood thinner to start working on the clot.  About 3am they got us in a room, it's going to be a long day no matter what!  Of course I didn't grab my phone charger and my phone is on it's last bar   I hope to have some news by 10am.


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## DustyKat (Jul 17, 2012)

Good lord! That was close! Thank goodness they called when they did....phew. 

I don't know what name is in the US but here the injection is called Clexane.

I hope everything turns out okay hun. :hug: 

Sending loads of love, luck and well wishes across the pond hun...:goodluck:

Thinking of you, :heart:
Dusty. xxx


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## Tesscorm (Jul 17, 2012)

How scary for you!!!  But thank God they called and you were able to get her to the hospital!  I hope she's not feeling badly though and hope you get some answers soon! :ghug:


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## crohnsinct (Jul 17, 2012)

How scary!  See! You were feeling all guilty for overreacting and you were right all along!  A parent always knows.  Praise God they called when they did.  I hope it is smooth sailing from here on out.


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## JSchneider (Jul 17, 2012)

Well, it's 11am and I'm still waiting for the doctors to decide what they need to do.  Guess we wont be going home today~


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## Farmwife (Jul 17, 2012)

Wow! What a scare!!!! 
How is she resting now? Is she in much pain? 
Have you or will you be able to get some rest? 
No probably not, to much going through your head.
I hope and pray things will get better soon. 
Keep up the updates! I think_* WE ALL HERE *_will be waiting and watching for them.

Farmwife


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## dannysmom (Jul 17, 2012)

Your instinct was right .... I guess this must lower your faith in your regular doctor somewhat. I am glad the GI finally called and I really hope all goes well. Good luck!!


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## JSchneider (Jul 17, 2012)

She's doing really good right now, they are still not sure when they will remove the picc line.  The hematologist is looking at the ultrasound to determine where the clot is. I did get some not so great news: she'll be getting shots in her belly twice a day for 3 months b/c of this clot and then in 3 months they'll need to do testing on her to see if she's developed anymore clots.  The dr. said the picc line isn't worth the risk and if she doesn't do well w/ solids we'll have to do EN-possibly w/ a tube up her nose since she's has issues w/ taste & textures.  Hoping to go home tomorrow, you all know sleeping at a hospital is not happening


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## AZMOM (Jul 17, 2012)

OH MY GOODNESS!!!!!  Is she getting Lovenox?  That's my guess.  

Praying for good news and a plan.  She's had enough drama! (So has her mama).

J.


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## izzi'smom (Jul 17, 2012)

I am SO thankful that you went to the ER...I have CHILLS...how scary!! Sorry to hear about the shots...they can be tough on our little ones...but I hope everything gets cleared up quickly. My dd adjusted quickly to her ng tube, although the first insertion was tough. :ghug:


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## Catherine (Jul 18, 2012)

Good luck, thinking of you.


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## DustyKat (Jul 18, 2012)

Good luck for today hun...I hope a discharge is on the cards! 

Thinking of you, :heart: 
Dusty. xxx


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## JSchneider (Jul 18, 2012)

Thanks everyone, I was able to get some sleep/rest last night so hopefully today they will let us go home.  She had her 3rd shot this morning and did a little better, I hate to think of all the things our children have to get use to---just not right!


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## DustyKat (Jul 18, 2012)

Thanks for the update hun...:hug: 

Good to hear you were able to get some rest and hoping they stamp those papers today! 

Amen! It surely isn't right! :voodoo::voodoo::voodoo::voodoo::voodoo::voodoo: 

Dusty. xxx


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## Tesscorm (Jul 18, 2012)

Hope you get home today!!!

My son is older, however, the NG tube has been fantastic for him!  He is also very picky re new tastes, textures, etc.  Drinking the EN shakes would have been much, much harder for my son compared to using the NG tube.   If you do end up going the EN route, here is the link to the Kids on EN thread - lots of info for you.

http://www.crohnsforum.com/showthread.php?t=36345

Good luck! :ghug:


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## JSchneider (Jul 18, 2012)

Love the pics there Dusty~ gave me a smile 
Thanks for the link for the NG tube! I will look at it when I get home,my battery is dieing on my computer so for now I will be off.
They did pull the picc line a few mins ago and told us we can go home tonight!


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## DustyKat (Jul 18, 2012)

Yes! Sunshine on the horizon! :sun::sun::sun: There certainly is no place like home! 

Good luck with the next step JS...:hug: 

Dusty. xxx


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## izzi'smom (Jul 19, 2012)

yay for home!!!!
Wishing you a wonderful, restful night!!!


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## Farmwife (Jul 19, 2012)

Just checking up to see if you made it home? Plus, to see how you girl is doing?

Farmwife


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## JSchneider (Jul 19, 2012)

We made it home just before 7pm.  She is still sleeping, it's 9:30am 
Everyone is happy to be home, now she can begin healing and trying the smaller meals everyday to see if we can keep her weight up.  Her GI is gone this week on vacation so I had to make the decision to pull the picc line on my own. I'm sure he'll understand why I made the decision to pull it, but I'm not sure if it would have been his choice.  They wanted to move it to the other arm, but I feel like this happening only 2 weeks into it was not a good sign.  Also I was told that our kids, Crohn's kids, are more likely to have blood clots w/ or w/o picc lines~I didn't know that!  The picc line only raises the risk!  The things you learn when you are going thru something like this.
I had to wake her at 3am for her Lovenox shot, that went well-but was still hard to do 
She starting to have some signs of depression too, spent most of her night crying b/c her cat was gone.  Hoping she has a better day, it's hard watching these babies go thru everything.
Thank you for all your support, it helps going thru this with each of you.
God Bless~


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## crohnsinct (Jul 19, 2012)

Awww poor pumpkin.  I hope being home cheers her up some.  Good luck with the small meals.  Keep us posted. 

I didn't know that about blood clots...


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## DustyKat (Jul 19, 2012)

> I was told that our kids, Crohn's kids, are more likely to have blood clots w/ or w/o picc lines~I didn't know that!


Yes, unfortunately when flaring another effect it has is it seems it can make the blood "sticky". In my own opinion I think it is because the bodies response in trying to heal the bowel and the associated bleeding that many suffer with is to increase the amount of platelets being produced, hence the 'sticky' blood. 

I hope the new day brings better times for your baby, bless her...:hug:

Dusty. xxx


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## Sascot (Jul 22, 2012)

Just catching up on all the threads, hope everything has settled down now!


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## JSchneider (Jul 22, 2012)

Things have been pretty quiet around here since we came home Wednesday :boring: ~and I :heart: it!  She's not lost/gained weight but is holding at 51.2 lbs.  She's eating small meals and doing really good w/ her Lovenox shots. Her poor belly is bruised up, I can hardly wait to finish this up!  This coming Thursday she has another doppler to check on the blood clots, and then see her GI on Friday.  We are hoping to stay the night Thurs and do something fun in OKC, it's been a long time since we had fun!
Thanks so much for all the support~


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## crohnsinct (Jul 22, 2012)

Sounds encouraging and I so hope you get to do something fun!!!!


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## Tesscorm (Jul 23, 2012)

Glad to hear things are looking up!     Hope all goes well Thursday - test-wise and fun-wise!!


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## DustyKat (Jul 26, 2012)

I hope all is continuing to go well JS!  

Good luck for today's doppler and tomorrow's appointment!...:goodluck:

Dusty. xxx


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## izzi'smom (Jul 26, 2012)

also checking in...wishing you luck in the next couple of days!!


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## JSchneider (Jul 26, 2012)

Thanks Ladies~ we're packing up this morning to leave, since she has a GI appt tomorrow we'll stay the night and have a mini vacation.  She's been doing really good eating and her bathroom visits...well, she might go 3 times a day~most of the time 1----YES 
I'm so excited, but I'm also scared to be too excited, you know how things can change so fast, just trying to enjoy the Peace we have right now!


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## crohnsinct (Jul 26, 2012)

I am so glad htings are moving in the right direction.  Good LUck today and tomorrow!


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## DustyKat (Jul 26, 2012)

Thanks for update JS!  

Thinking of you and everything is crossed that all goes well! 

Dusty. :heart:


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## JSchneider (Jul 27, 2012)

She had her doppler on Thursday, no word yet we'll have to wait until August 13th to see the Hematologist- but the swelling is practically gone. Today we saw her GI and he was SO excited to hear about the wonderful progress she's had just since Monday of this week!  We really feel like she's arrived, remission is here  My husband is afraid to accept it b/c he doesn't want the relapse to come and be disappointed.  She's loving life right now and even told me to "live life Mom, have some fun!"  So wonderful to see the light in her eyes and the smile on her face 
So very thankful that God has delivered our baby from this pain and given her so much life to live!  If relapse come, she'll get thru it, for right now we are going to enjoy life.  Spent most of the day at the zoo- first time since last summer that we were able to go anywhere (besides the hospital).
Thank you all for your support- I am truely thankful for everything-your words and prayers!


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## DustyKat (Jul 28, 2012)

Re the doppler: Here's hoping...no news is good news!  

And what a fab appointment...it doesn't get better than an excited GI! :soledance:

Onwards and Upwards!
Dusty. xxx


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## Sascot (Jul 28, 2012)

Wow, that is really great news!  Glad to hear she is feeling so much better!!!:thumright:


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## Farmwife (Jul 28, 2012)

Oh, how wonderful to see the light in her eye's again. I know what you mean about that. I guess that's what I start waiting for when Grace is unwell. That way when I see the light, I at least know things are better for the moment.


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## mikayla (Jul 30, 2012)

Mikayla has been home from the hospital for 10 days on TPN. Nothing else orally. It does SUCK! She finds satisfaction in chewing gum. Sugar free mostly. She did have some sugar gum and a sucker and it took her glucose levels off the charts. Way too much sugar. Her first does of Remicade is tomorrow. in 5 weeks the Dr said she could have clear liquids. She has two areas that are extremely inflamed. Can't wait for remission. I hope you Emily finds some comfort. This is such a hard disease and for kids to live this way, just sucks! Blessings to your little one and you mom. You are doing a great job!


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## JSchneider (Jul 30, 2012)

mikayla said:


> Mikayla has been home from the hospital for 10 days on TPN. Nothing else orally. It does SUCK! She finds satisfaction in chewing gum. Sugar free mostly. She did have some sugar gum and a sucker and it took her glucose levels off the charts. Way too much sugar. Her first does of Remicade is tomorrow. in 5 weeks the Dr said she could have clear liquids. She has two areas that are extremely inflamed. Can't wait for remission. I hope you Emily finds some comfort. This is such a hard disease and for kids to live this way, just sucks! Blessings to your little one and you mom. You are doing a great job!


Bless her, and your, hearts!  I know your pain as a parent, I will be praying for your family.  I hope the 5 weeks go by fast for her, I HATE that they have to go thru so much.  Em did okay w/ the sugar free gum, but I only have her 2 pieces a day.  Her dr said the blood clot was a blessing in disguise, it forced us to remove the picc line otherwise she would be on it and he wouldn't know when he could safely remove it.  She only made it 2 weeks but I guess that's all it needed.  After 10 months of living in constant fear/pain we have finally arrived!  
Good luck w/ the Remicade, Em has her 6th one in a couple weeks. I'd love to not put her thru that every 6 weeks, but looks like once you start you're stuck 
I'll be thinking/praying for you~:rosette2:


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## crohnsinct (Jul 30, 2012)

Oh JS thi is awesome news!  I hope things just get better and better an that the Remicade keeps her in remission for a long long time!


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## JSchneider (Jul 31, 2012)

crohnsinct said:


> Oh JS thi is awesome news!  I hope things just get better and better an that the Remicade keeps her in remission for a long long time!


Thanks~ we're super excited!  Life w/o worry...now that's living! :hug:


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## JSchneider (Aug 2, 2012)

Tuesday night Em was complaining about her left cheeck tingling and feeling funny, as you all know Prednisone makes our little ones have puffy faces.  The puff on the left side looks lower than the puff on the right- it didn't look that off to me earlier in the day, but I dismissed it and put her to bed.  Wednesday I took her out (it's 114 here) to the store, she was stuck at home for so long that now she insists on going everywhere I go :lol:  While we were at the store she started looking pale and said she felt hot & ill, also said she was getting a really bad headache.  I put her in the cart and got her a drink thinking it must be this heat.  We get home and I have dinner going when she comes and tells me if she touches her left chest area it hurts, I had her take her shirt of and...that side is swollen AGAIN! :eek2:  I called the nurses hotline for our insurance, I've been speaking to one of the nurses for almost a month now so she knows Ems history.  We talked about it and I decided that today, Thursday, I'm calling the Hematologist to get her in.  She has an appointment but it's not until the 13, I don't think we can wait until then.  I will be calling at 8am when they open, we are 2 hours away from them so I'll need to get everyone up and ready 1st thing.
Just when you think it's safe to go back into the water....:ymad:
(remember the movie Jaws?!~ trying to get a little humor in my day)
I'll keep you updated, hopefully w/ good news. :facepalm:


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## Mom2oneboy (Aug 2, 2012)

Bless her heart!  You all have been through so much in such a short period of time.  Praying for some good news and relief for all of you!


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## Farmwife (Aug 2, 2012)

I also hope you bring us good news.
 Your poor girl. 
I hope she's up to running around and driving you crazy very soon.
Give her hugs from us!

Farmwife


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## crohnsinct (Aug 2, 2012)

Oh No!  Just seeing this now and hoping everything is going better and that you have some answers.


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## JSchneider (Aug 2, 2012)

Okay, after spending ALL day in the ER they admitted her to a room.  They did a doppler, chest x-ray, blood work- no blood clots, not sure why she's swelling tho.  Of course we get to stay the night-BUT next time I'll make the 2 hour drive to OKC, I guess Tulsa and OKC can't communicate so they have no idea what her levels are suppose to be at and they think we should be giving more Lovenox a day  
I'm a bit tired, hoping we can go home tomorrow- On a good note her GI dr. called me when he heard she was back in the hospital, he thought the Tulsa hospital would work w/ the OKC one too   Live and learn~
Hope to be home and in bed this time tomorrow!


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## Farmwife (Aug 2, 2012)

I'm glad their's no blood clot. Just a bummer that they can't find out way.
I hope she is resting well. I will be thinking and praying for you both.


Farmwife


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## mikayla (Aug 3, 2012)

Sigh....I hope you both are resting well and get home today in your own beds. Live and learn seems to be our policy too. We had that darn TPN alarm wake us at 3am. She had her arm bent and it was going off for over an hour and nobody heard it. Just means she has to remain on TPN an extra hour today. I swear everyday it is something. We all need a SUMMER DO OVER! Prayers going your way!
Mik's Mom


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## Tesscorm (Aug 3, 2012)

JSchneider - I hope you are on your way home!  Glad there were no clots! but frustrating that they don't know what causing the swelling! :ghug:


Mikayla - Can completely understand your frustration at the TPN being blocked last night!  Been having similar problems with my son's EN equipment :ymad:  When you have 'big' things to worry about, it's just annoying when 'little' things take up your time and concern!  :ghug:


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## JSchneider (Aug 3, 2012)

They say misery 's company~ and I'm in really good company!  Next year HAS to be better!


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## crohnsinct (Aug 4, 2012)

Just seeing this now. I hope you are home and the swelling has subsided.  Stinks that the summer is spent dealing with all this but silver lining is that she isn't missing school and hopefully you will have everything sorted out by the time school starts.


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## JSchneider (Aug 4, 2012)

We made it home last night, I was NOT a happy mom tho.  I told the nurse at 2 pm that she needed to find the attending dr and tell him to write out our discharge orders and we were leaving now. I was tired of waiting for the hematologist that was suppose to come by the day before.  It was Friday and I could just imagine her wanting to go home early and leaving us in the hospital another night   Twenty minutes later a dr. walks into the room and says he's been sent by the attending to see Em, he's a different hematologist.  He goes over some things, which he had some really good information and I learned a lot, then tells the nurse right in front of me to get the discharge papers going now and get us out. The nurse tells me, give me 15 mins and I'll be back...35 minutes later I hear a bunch of cackling in the hall (please know that I'm a very kind person, not pushy, I try my best to help everyone and be understanding) I look down there and all the nurses are at the station just laughing it up! SERIOUSLY?!!  One of them, not our nurse, sees me and comes to our doorway. I chewed her up one side and down the other! I was SO MAD!  It took our nurse less than 2 seconds to get in our room, she removed the iv-that was in Ems left arm, the same arm w/ the swelling, that she NEVER flushed ALL day and wasn't used at all for any fluids...hello, she has a history of problems w/ that arm and blood clots?~  
It was great, after she took the iv out I had our bags ready, we grabbed them, and marched staight out the door. As I passed the nurses station I looked at them and said "We will NEVER come back here again!" their jaws dropped!  One of them tried to escort us out, I shot her a look that stopped her dead in her tracks...GRRRR 
Worst visit EVER!


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## JSchneider (Aug 4, 2012)

crohnsinct said:


> Just seeing this now. I hope you are home and the swelling has subsided.  Stinks that the summer is spent dealing with all this but silver lining is that she isn't missing school and hopefully you will have everything sorted out by the time school starts.


Thanks so much~ it's been so hot we might as well hang out inside :lol2:
I've been homeschooling Em and her sis for 3yrs. now, due to her stomach issues.  We love it!


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## Farmwife (Aug 4, 2012)

We home-school also and we love it. 
Which is a good thing given last year Grace would have missed half the year. 
Of course she's only going into K-4
However she probably more ready for kindergarten then her brother.:yfaint:


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## crohnsinct (Aug 4, 2012)

Thata girl!  Give then that tough city girl attitude.  I might end up converting you all afterall! 

Homeschooling?!  I bow to the masters:worthy: I have an 8 year old with an LD who begs me to home school her...I just don't think I could....still mulling it over but I am such a procrastinator and have adult onset ADD (made up by me ofcourse) that I could see us (read ME) getting distracted by some other project and she would be 18 and still in the fifth grade!


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## JSchneider (Aug 4, 2012)

crohnsinct said:


> Thata girl!  Give then that tough city girl attitude.  I might end up converting you all afterall!
> 
> Homeschooling?!  I bow to the masters:worthy: I have an 8 year old with an LD who begs me to home school her...I just don't think I could....still mulling it over but I am such a procrastinator and have adult onset ADD (made up by me ofcourse) that I could see us (read ME) getting distracted by some other project and she would be 18 and still in the fifth grade!


How funny!  Our youngest has ADHD, so I know about the distracting!  
I need all the help I can learning how to be a bit more aggressive,  but I guess when it comes to my kids it's comes naturally! 
We :heart: homeschooling, it's removed some stress for her.  Her teachers would complain she was always in the bathroom---Geesh, I wonder why?!


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## dannysmom (Aug 4, 2012)

I am glad you are home. Sorry it was such a frustrating hospital stay!


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## DustyKat (Aug 5, 2012)

Thanks for the update JS and YAY for being home! There's no place like home! 

So sorry to hear about the hospital stay though.  But I must say...you handled it beautifully! Oh to have been a fly on the wall! :thumleft: 

Dusty. xxx


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## JSchneider (Aug 5, 2012)

DustyKat said:


> Thanks for the update JS and YAY for being home! There's no place like home!
> 
> So sorry to hear about the hospital stay though.  But I must say...you handled it beautifully! Oh to have been a fly on the wall! :thumleft:
> 
> Dusty. xxx


Thanks~ tomorrow I will calling to complain-but I will use my reasonable voice so hopefully they will listen to me!  Her swelling has gone down by 1" on her chest, but the pain has returned :yfrown:
Here's to a good day for everyone!


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## Sascot (Aug 5, 2012)

Hi, glad you got home and away from that hospital - sounds awful.  At least you know not to go back there now!  Your poor girl seems to take one step forward, two steps back.  Hope the pain goes away soon.


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## JSchneider (Aug 5, 2012)

Sascot said:


> Hi, glad you got home and away from that hospital - sounds awful.  At least you know not to go back there now!  Your poor girl seems to take one step forward, two steps back.  Hope the pain goes away soon.


Thanks, no kidding, UGH! We're on edge now, she had an episode Saturday while we were out and her arm/chest has been hurting a little today... Praying for a break!


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## Naturelover (Aug 5, 2012)

JS, 
Has your daughter been running any low grade fevers? Is the area hot to touch?

I had a picc line that had to be removed due to cellulitist and two blood clots. Ultra sound is what the doc's used to find my blood clots; not x-rays etc. I was only having a low grade fever at night. By low grade, I mean low grade. I was fatigued as well. I had a lot of pain in my biscep where the blood clots were.

I had IV antibiotics for the cellulitis. My arm was inflammed, hot to the touch and red. Very painful as well. I had green pus coming out where the picc line was inserted into my arm.

Did the doc's say anything about cellulitis? Google it. It can't hurt.

I'm sorry your little one has to go through so much. I hope she feels better soon. Keep us posted on how she's doing.

Blessings and prayers coming your way, Naturelover


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## Naturelover (Aug 5, 2012)

Crohnsinct, 

I home school one child now. Was three, then two. My middle child has scattered development as well as learning issues. When we first started homeschooling he had significant health issues. His G-Tube was removed when he was 15 or 16 years old. Being home schooled helped him be healthier and heal faster when he was sick. I have significant medical issues, ADD and find home schooling to be the best thing for our family. I have graduated my middle son and he is now being successful in college. He is not doing a full class schedule yet, but that's ok. His goal is to do a full time college schedule by next fall. My 14 year old daughter, tenth grade, is taking classes at both a co-op and the local college this fall. I had never put her in a co-op until last year. My son only took one co-op class as a senior in high school. 

Sooo, even an ADD, chronicall ill, mom can successfully home school. If the home school bug ever bites you, feel free to contact me for help and advice. We all need each other for support. I didn't have any support when I first started out home schooling. When I finally did have support, it was wonderful!

Enough rambling for now. Blessings! I hope all is well with your family.:rosette2:


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## JSchneider (Aug 5, 2012)

Naturelover said:


> JS,
> Has your daughter been running any low grade fevers? Is the area hot to touch?
> 
> I had a picc line that had to be removed due to cellulitist and two blood clots. Ultra sound is what the doc's used to find my blood clots; not x-rays etc. I was only having a low grade fever at night. By low grade, I mean low grade. I was fatigued as well. I had a lot of pain in my biscep where the blood clots were.
> ...


Naturelove,
Thanks SO much for this info, she's been "tired" but she's so tiny and weak- I've not noticed any fevers on that area, I'll check her temp tho.  WOW, sounds like you had a go!  They did a doppler scan when we were there, but w/o knowing where the line was placed (had it pulled 2 1/2 weeks ago) they were in the dark.  I know I should have just made the drive, I will if things go that way again.  The Hematologist did mention cellulitis and another type of inflammation w/ the veins also.  I will search this info out and educate myself some on it. We should all go to med school btw :thumright:


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## Naturelover (Aug 5, 2012)

My middle son has high functioning aspirer's. You can't even tell he has it unless you know him like we do. Homeschooling made all the difference in the world being able to teach life skills etc.

Look for the little red bump on her arm or where ever she had her picc line. My was in my left bicep and the bump has now gone down, but there is still a red spot where the picc line was. My picc line was removed May 22, 2012. I had an implanted port installed on my right chest just above the breast and into the juggler vein. Love it! So much easier to deal with. Looking forward to starting my IV tonight.

Also, you mentioned she is/was on Lovenox. Is she still on it? The Lovenox stops the platelets from forming any further blood clot and Warfarin/Coumadin thins the blood. There are also other blood thinners, but these two are the most common. Warfarin is the generic for Coumadin. 

It is not uncommon to have pain for two to three months in the area of a blood clot even after the blood clot area looks "healed". Warming the painful area helps diminish the pain. Swelling would be abnormal if she was already treated for ten days with Lovenox and then is either currently on or has finished a course of blood thinners for three months. The time and dosage might not be the same for the pediatric patient as the adult. But, you get the idea. The only reason to remain on a blood thinner for life is if you have a blood condition in which your blood clots easily. 

Something to keep in mind down the road for when she is older. My GYN recently told me that I could not take hormone therapy because I had had blood clots. Even though the clots were due to the picc line, she still said absolutely not! It is way too dangerous! I have some gyn issues with bleeding that would be helped with hormone therapy, but because of the blood clot history, I cannot have the hormone therapy.

Below are links to Cellulitis websites:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001858/

http://www.umm.edu/altmed/articles/cellulitis-000033.htm#ixzz1vxRbns3M

http://www.nlm.nih.gov/medlineplus/ency/imagepages/2379.htm

Was this the term the doc tossed at you?

Superficial Thrombophlebitis

http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/10967.html

These links are for your info.

I never had any chills with my cellulitis.

Feel free to PM me and I can email you articles that I have in files on my computer.

Blessings,
Glo


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## Naturelover (Aug 5, 2012)

Thank you for sharing a pic of your daughter. She's adorable. 

My son was and still is very thin. He had to have additional supplements during growth spurts. It took years for me to figure this out. When he was going through a growth spurt, we had to give him additional Pedisure. We used Boost when he was older. During a growth spurt, you could see the veins on his face. It took me years to figure it out. Once we did, it was like we were on auto pilot as soon as we saw the veins on his face and automatically added extra supplements. He is now 6' 2". He still uses the Boost to this day because he gets bouts of low blood sugar levels and his system still doesn't seem to be absorbing all the nutrients from food. He has no diagnosis to date. Just a very long list of symptoms.

Anything I can do to be supportive to you, let me know.

Blessings,
Glo


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## Naturelover (Aug 5, 2012)

Vasculitis may be a term your doc tossed around. I was trying to remember the word and just couldn't. Then I found it on the forum.

http://www.crohnsforum.com/wiki/Vasculitis


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## JSchneider (Aug 6, 2012)

Naturelover said:


> Vasculitis may be a term your doc tossed around. I was trying to remember the word and just couldn't. Then I found it on the forum.
> 
> http://www.crohnsforum.com/wiki/Vasculitis


That was it! Thanks, I was racking my brain trying to remember!


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## Naturelover (Aug 6, 2012)

You're welcome. With all the medical termanology we have to remember, I think we've all gone batty. :ybatty: 

My IBS pain is awful today. I see my pcp today. Hope I can drive okay. Don't you hate trying to remember everything you have to take with you to the docs?

Let us know how things turn out. 

Praying for you and your family, NL


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## JSchneider (Aug 6, 2012)

Naturelover said:


> You're welcome. With all the medical termanology we have to remember, I think we've all gone batty. :ybatty:
> 
> My IBS pain is awful today. I see my pcp today. Hope I can drive okay. Don't you hate trying to remember everything you have to take with you to the docs?
> 
> ...


Praying for you NL, hope all goes well at the drs! :thumright:


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## Naturelover (Aug 6, 2012)

Thanks for the prayers JS. :biggrin: I really appreciate them. :soledance:

I thought I'd share a bit about my family and me.

IBS still acting up. Still bloated. Still doing lots of large, semi-firm stool even though I've been on Miralax and doing small loose tiny stools for over a month now. Doc said the blood test for Celiac came back neg. Doesn't mean I don't have it. Doc said a colon biopsy would be the final test for it. She is checking for some food allergies via blood tests, but there is a bunch more food I think she will have to check. I think I will visit the dietitian again to figure out what foods to test for allergies. I'm also going to make a list of the foods I avoid eating and why. Vitamin C chew-ables cause my stomach to burn like crazy and gives me GERD. I also avoid anything corn like the plaque. Got off of all high fructose syrup etc... What a difference it makes. I now have an appetite for proper foods. People don't realize that high fructose corn syrup causes you to feel real hungry and crave sweets and high calorie foods. I don't drink any soda. It's full of high fructose corn syrup. I lost a bit of weight and was then within normal weight limits for my age. 

We have switched to cooking more natural foods and avoiding the processed ones. I can't let hubby go grocery shopping because he comes home with lots of processed foods like chicken pot pies, fried chicken strips, frozen red potatoes with seasoning (Yuck! They make me sick!) I also can't eat hamburger hardly at all. Just doesn't digest. My daughter is an awesome cook and I can eat her chicken pot pie with no problem. All natural ingredients.

The picture of my family on the couch was taken this past March. See how thin I am? (I have glasses) Since starting my IV hydration therapy I have been able to gain weight. The other picture is from last week at a family camp. Check out the website www.joniandfriends.org Because of your daughter, your family is eligible to attend the camp next summer. The camps are all over the U.S. as well as International. I had so much fun last week. I don't think I've smiled so long or laughed so much in ages. I haven't seen my daughter so happy in over seven months. The guy in the wheelchair is the camp doc. He is amazing. The girl in the red/dark pink shirt is an RN and was assigned to be my daughter's STM (Short Term Missionary). The other gal was my STM. She was to help me with whatever I needed and to assist me walking when my family wasn't around.:soledance:

The boy in the middle on the couch is my oldest son. He is in the Air Force.:medal1::biggrin:

The thin boy with glasses in both pictures is my son with GI issues etc... He had an NG-tube at four months of age, J-Tube at two years of age and then a year later we switched to the G-tube. Eventually he ate orally and did his supplements as I had previously mentioned.

My daughter was having severe tail bone pain this past January. We were told once again that she had a bruised tail bone. Poor child couldn't sit on her bottom much less barely walk. She had been having intermittent pain since she was about eight or nine years old. She went through a growth spurt in Jan. That's why I think her pain got worse. She then spent the night and next day in the ER on Feb. 13th & 14th due to a ruptured, blood filled, ovarian cyst. They gave her all sorts of pain meds before they finally gave her morphine. She continued to have major pain and was barely able to walk. Sitting on her bottom was out of the question. Both of her hips hurt so much from laying on them. She was diagnosed with a hooked coccyx and coccyxiodinia and sent to PT. Months went by and she was still having coccyx pain as well as severe pelvic pain and more sore spots had developed on her spine. The GYN puts folks on birth control pills for ruptured cysts as well as very heavy periods. Both of which she has. Finally, the GYN did exploratory surgery because the birth control pills weren't working and the poor girl was having 12 day long heavy periods as well as still having severe, debilitating, pelvic pain and coccyx pain. I had read up on adult coccyx pain and discovered it could be caused by constipation. I took my daughter, Melissa, to the GI doc. Next, the gyn decided to do exploratory surgery since nothing was improving for Melissa but getting worse. The gyn doc found two para-tubal cysts which could have cut off circulation to her ovary had they been allowed to remain and continue to grow. They also found another cyst on her ovary as well as an adhesion that had one end attached to the colon and the other end to the pelvic wall. The gyn doc cut off the adhesion (some sort of membrane) from both the colon and the pelvic wall, then cauterized them. She said that the colon dropped a long way. The doc also found that Melissa's colon was more than twice the size it's supposed to be. Back in May, blood work indicated inflammation of the gut. Melissa has severe constipation and takes 4 Senokot and 1 Amitiza in the morn; 3 Ducolax Laxatives and 1 Amitiza at night and still struggles with doing a BM. She was on Myralax, 3 1/2 capfuls daily, but eventually we had to stop it because it wasn't helping and her bottom was getting sore and raw like mine. We both used/use Extra Strength Cortisone Cream to attempt to heal up the bottom.

I'm sure you can figure out who hubby is. :wink:

I hope I didn't bore you.:boring: That would be terrible.:ywow:

Have a wonderful week!

I can't wait to hear how Em is doing. 

By the way, how is Em's sister handling all this. It can be hard on other siblings when one sibling needs so much attention and care.

Prayers, NL


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## JSchneider (Aug 7, 2012)

NL, sounds like you and your family have been and are continuing to deal w/ a lot!  We will pray for you all and hope you can find peace for everyone! You sound like such a strong woman going thru all that you do plus caring for your family and their needs :thumleft:
Em is still having pain/swelling but I can tell her spirits are up. She's being a brat, I say that w/ a smile on my face b/c she's not felt well enough to be bratty in a long time :biggrin:
Her little sis has her moments, she's more prone to feel left out or less loved anyway-I think some people are just born that way :ytongue:  But I do make an extra effort to give her even more love and support.  We have lots of people who have taken her for weeks this past summer. She's had more fun this summer than I've had in years! 
Next week Em sees the Hematologist and her GI, I told her I wanted her up to 55 lbs. by her next appoitment-she came to me yesterday and told me she weighs 55 lbs! ika: Happy Dance time!  As long as she keeps it by next Monday we'll be golden!


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## Naturelover (Aug 7, 2012)

Glad to hear Em is feeling more "Spirited".:thumright:

I'll pray she keeps the weight on.

I lost 4 lbs by last night. I'm still having major cramping and am now doing hard BM's. Does it ever end? I'm not as bloated. I guess that's the silver linning to the cloud.

Melissa saw the gyn for a surgical follow up today. She was shocked at the meds Melissa is on just to try to do a bm. She ordered an x-ray to look for constipation. There are some very dark spots, good size, in the colon area. I'm not sure they are supposed to be there. I just wish the pediatrician or GI would return my call. :mad2:

I dare say lil sis is having more fun this summer than all of us put together.:soledance:

I'm sure next week can't come soon enough.

Keeping you in prayer, NL


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## finnegan (Aug 7, 2012)

I can't stand that anyone has this horrible disease; especially kids. It really isn't fair for little guys to lose so much their childhood to this disease. Bless you and I pray for remission for your daughter and all fellow crohnies


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## JSchneider (Aug 8, 2012)

finnegan said:


> I can't stand that anyone has this horrible disease; especially kids. It really isn't fair for little guys to lose so much their childhood to this disease. Bless you and I pray for remission for your daughter and all fellow crohnies


I agree, it's a terrible disease that steals so much from everyone.  Yesterday she had a bad day- 5 visits to the bathroom in 2 hours, plus bleeding, pain, and the lining of her intestine was coming off again :frown:
Her GI bumped her back to 20mg Prednisone, we were down to 10mg for 3 days, and she's back to chicken, turkey, and potato diet (at least she gets to eat).  Hoping to stop this before it gets out of control again!
Thanks for the prayers~ God Bless


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## Sascot (Aug 8, 2012)

Sorry to hear she is having another bad day!  Hope the increased Pred will do the trick and she gets over this bump in the road quickly!


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## Naturelover (Aug 8, 2012)

Sorry to hear things are going the other direction for Em again. 

What do you mean by the lining of her intestine was coming off?

Blessings and prayers coming your way, NL


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## Farmwife (Aug 8, 2012)

Sorry to hear the down turn.

See I'm not the only one wondering about the lining?


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## JSchneider (Aug 8, 2012)

Please excuse my description: if you take a glass of water and drop crisco/lard in it, that's what I was told is the intestinal lining. Looks like a blob, somewhat formed, but a white colored blob-unless there's bleeding of course.  Hope I didn't ruin crisco for anyone


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## Naturelover (Aug 8, 2012)

Naw, you didn't ruin crisco for me. 

But, I did ruin my sons lunch. Ha, ha, ha. I had a bite to eat for lunch and then my IBS started acting up and the stomach acid started acting up and I felt nauseous yada, yada, yada. So I was grabbing my tummy and saying, "ooo my tummy's acting up from lunch, I just wanna barf. Tummy hurt. Barf."  He's way too squimish! :ybiggrin:


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## JSchneider (Aug 14, 2012)

Update: Em went to the hematologist yesterday, he said she doesn't have to do the lovenox shots anymore :dance:
Later that day we saw her GI and he felt that this little set back is just that a little set back. He had her do her Remicade treatment while we were there so we wouldn't have to drive back.  He also said she may have to switch from Remicade to Humira because she tested positive for the antibodies that reject the mice protein that is in Remicade.  Humira has a human protein and he feels if we have to switch that he body would accept that easier. I found that very interesting, this is her 6 dose of Remicade and she's never showed any change while on it. I need to do more research on Humira- off to the books for me!
I hope you all have a wonderful day :ghug:


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## Patricia56 (Aug 14, 2012)

Your little girl has been through a lot. So have you. I ache for everyone in your family. Going through this must be so traumatic. It is truly life-altering for the entire family.

I am rather new to the board but not to Crohn's. I have a sister with very severe short bowel who is on long term TPN with a port. At various times she has had PICC and central lines as well. Our son was dxd with CD at 10 and we did EN via NG tube twice. He also has significant sensory issues. I thought he was never going to stop smelling his food before he ate it and he only started eating foods that were mixed together about the time he turned 13. It took quite some time for my son to be diagnosed and he has done Humira shots.

I read through all your posts so far and have some questions and thoughts to share.

1. I suggest that if there is any way for you to go for a 2nd opinion to Mayo Rochester or to CHOP in Philadelphia that you do so. Both those places will help you from their end make arrangements to come (or so I have heard about CHOP and know from personal experience about Mayo).

2. I understand the choice of TPN over EN but wonder about the possibility of at least trying an NG tube to do feedings. And it could be attempted at the same time she is doing TPN since that has clearly not been enough on it's own or in combo with Remicade (or so it seemed from your posts). In Europe/Canada/Japan the preferred approach is EN over TPN because the research has supported this approach as the most likely to bring about remission.

3. There are also a number of ways to try to make oral EN supplementation or exclusive EN more palatable for her that may work. You don't know if you don't try. I would guess that there are things you would never have thought she will eat that she does and other things that she rejects you were sure she would eat. May be the same with EN. Or at least some flavors/kinds.

4. They need to be closely monitoring her vitamin levels, especially vit. A and Vit D to ensure she does not sustain damage to her vision and bones that may be irreversible. If they are not checking these (and they really should be checking her other vitamin levels too) then you need to get on them about this.

5. There is absolutely NO reason for her TPN to have been inadequate for that period of time. As I understand it, the home health agency providing her TPN should be monitoring her weight and drawing labs on a weekly basis and requesting adjustments in her TPN formulation accordingly. If the agency you are working with does not have a dietician and pharmacist dedicated to handling TPN patients then I strongly suggest you look for one that offers this service. You won't find them operating out of claremont. Any agency with that level of care (only one may be a Coram office) is going to be in Tulsa or even OK City. Your health insurance may or may not contract with them but if they don't I believe it would probably be worth appealing any denial in order to get services from a highly qualified service.

6. If they anticipate that she will continue to require TPN either continuously or intermittently for much longer then you may want to discuss placement of a port with the GI. Especially in light of the blood clot, this may be an appropriate alternative. PICC lines that are placed to allow TPN carry many of the same risks as a port because they must be advanced into the Vena Cava. They are normally replaced every 4 to 6 weeks, a procedure that normally requires sedation and placement by radiology. A port is placed by a surgeon once and can remain in place 5 to 7 years. There are other considerations for each one that you will have to weigh but I would start the discussion now so you have time to think it over, especially if she develops another clot.

7. Why didn't they start either 6-MP or Methotrexate at the same time as Remicade? In a child this sick, frankly, if you are going to do Remicade I would think you want to give her the best possible shot at making it work as long as possible. That means giving her both kinds of meds if you are going to use the research as a guide.

8. Humira shots hurt. They are given every other week in the belly or thighs. I suspect that your daughter is going to have trouble cooperating with their administration and you will be the one who has to give them to her. I suggest that you want to maximize the time she stays on Remicade if it is working for her. If it is not working for her then perhaps Cimzia would be a better choice as it is given as two shots once a month. Same number of shots but you only have to do it once a month. I have heard that Cimzia is less painful but do not know from personal experience.

9. If there is any way to find your daughter a therapist who has experience helping  children who have experienced significant abuse (not she that she has been abused in a traditional sense) I would do that and start taking her to see that person now. Experiencing this kind of medical trauma and physical illness has long term psychological/emotional effects.

10. You need a new pediatrician frankly. The advice about ignoring the swelling was, well, malpractice. That doctor has little to no experience with kids like yours and you need one who has the experience to help you. This stuff is probably not going to go away any time soon. We have a terrific pediatrician and he is essential to making our long distance partnership with our ped GI work well. He is part of a group that are all very good although some are better than others. We drive 30 minutes to get to his office. His group is affiliated with the tertiary care center in our city. You are 30 minutes from Tulsa and that's where you need to look for a peds who has the experience you need. She may need emergency admission in Tulsa and you need a pediatrician who has admitting privileges there, among other things.

Many hugs. You must keep in mind that this is going to be a long haul and care for yourself and the rest of your family too. It is a tough balancing act and I hope your spouse is there every step of the way, going to doctor's appointments and helping as much as possble.


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## Patricia56 (Aug 14, 2012)

Here's a link to the Coram OK City office. You may already be getting her TPN from them in which case I am very surprised that her care was compromised as they have a reputation for excellence in the delivery of infusion nutrition services. The problem may have been at the doctor's end of things. 

Anyway, in case you need it, here's the link.

http://www.coramhc.com/Map/OK_OklahomaCity.aspx


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## Naturelover (Aug 15, 2012)

I use Coram here in Maryland and I love my RN. I get all my IV hydration supplies from them as well. I "fired" the last three companies.


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## Naturelover (Aug 26, 2012)

JS,

How are you and EM? Haven't heard any updates, just wondering.....

Thinking about you and sending prayers your way. Naturelover aka Glo Worm

P.S. Don't let my new avatar confuse you. I'm still Naturelover. This particular avatar is a Glo Worm (One of my nicknames. Ha, ha.) A friend sent me this new Glo Worm avatar in an email. Too funny!


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## JSchneider (Aug 27, 2012)

Em is almost at 60 lbs, she's been doing wonderful! I've been down w/ terrible allergies tho.  I'm feeling better and ready for another wonderful week.  I hope all of you and your families are doing well also.  I will try to get on later and check the threads to see how everyone is.


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