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07-26-2012, 07:24 AM   #61
crohnsinct
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I am so glad htings are moving in the right direction. Good LUck today and tomorrow!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
07-26-2012, 07:25 AM   #62
DustyKat
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Thanks for update JS!

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

Dusty.
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07-27-2012, 09:34 PM   #63
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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!
07-27-2012, 11:54 PM   #64
DustyKat
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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!

Onwards and Upwards!
Dusty. xxx
07-28-2012, 04:06 AM   #65
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Wow, that is really great news! Glad to hear she is feeling so much better!!!
07-28-2012, 06:23 PM   #66
Farmwife
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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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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
07-30-2012, 09:50 AM   #67
mikayla
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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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DX: December 2011
past Meds: Endocort, Methotrexate; Pentasa, antibiotics for C-diff and abscess

Current meds: Prednisone, 6mp
July31, 2012 1st Dose of Remicade

Surgery:June 2012 to remove pill camera from inflamed intestines, appendix
07-30-2012, 11:14 AM   #68
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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~
07-30-2012, 09:43 PM   #69
crohnsinct
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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!
07-31-2012, 07:50 AM   #70
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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!
08-02-2012, 07:24 AM   #71
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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 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! 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....
(remember the movie Jaws?!~ trying to get a little humor in my day)
I'll keep you updated, hopefully w/ good news.
08-02-2012, 10:48 AM   #72
Mom2oneboy
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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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Shelley
11yr old son
dx Crohn's 2/2012
Currently on VSL #3
Started EN 4/2
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.
08-02-2012, 10:51 AM   #73
Farmwife
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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
08-02-2012, 07:52 PM   #74
crohnsinct
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Oh No! Just seeing this now and hoping everything is going better and that you have some answers.
08-02-2012, 09:45 PM   #75
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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!
08-02-2012, 10:32 PM   #76
Farmwife
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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
08-03-2012, 08:21 AM   #77
mikayla
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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
08-03-2012, 08:43 AM   #78
Tesscorm
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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!


Mikayla - Can completely understand your frustration at the TPN being blocked last night! Been having similar problems with my son's EN equipment When you have 'big' things to worry about, it's just annoying when 'little' things take up your time and concern!
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Diagnosed May 2011

Treatment:
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
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
08-03-2012, 09:25 AM   #79
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They say misery ♥'s company~ and I'm in really good company! Next year HAS to be better!
08-04-2012, 09:02 AM   #80
crohnsinct
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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.
08-04-2012, 09:04 AM   #81
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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!
08-04-2012, 09:06 AM   #82
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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
I've been homeschooling Em and her sis for 3yrs. now, due to her stomach issues. We love it!
08-04-2012, 09:28 AM   #83
Farmwife
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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.
08-04-2012, 09:50 AM   #84
crohnsinct
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Thata girl! Give then that tough city girl attitude. I might end up converting you all afterall!

Homeschooling?! I bow to the masters 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!
08-04-2012, 11:43 AM   #85
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Thata girl! Give then that tough city girl attitude. I might end up converting you all afterall!

Homeschooling?! I bow to the masters 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 homeschooling, it's removed some stress for her. Her teachers would complain she was always in the bathroom---Geesh, I wonder why?!
08-04-2012, 06:54 PM   #86
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I am glad you are home. Sorry it was such a frustrating hospital stay!
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(Danny's story)
08-05-2012, 06:16 AM   #87
DustyKat
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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!

Dusty. xxx
08-05-2012, 10:18 AM   #88
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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!

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
Here's to a good day for everyone!
08-05-2012, 03:20 PM   #89
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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.
08-05-2012, 05:59 PM   #90
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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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