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07-17-2012, 06:17 AM   #31
DustyKat
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Did everything go okay overnight??? I hope so!!!

Thinking of you,
Dusty. xxx
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Mum of 2 kids with Crohn's.
07-17-2012, 06:40 AM   #32
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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.
07-17-2012, 07:00 AM   #33
DustyKat
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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.

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

Thinking of you,
Dusty. xxx
07-17-2012, 07:55 AM   #34
Tesscorm
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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!
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Tess, mom to S, 22
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
07-17-2012, 08:47 AM   #35
crohnsinct
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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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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
07-17-2012, 11:02 AM   #36
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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~
07-17-2012, 11:41 AM   #37
Farmwife
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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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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
07-17-2012, 12:23 PM   #38
dannysmom
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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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Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
07-17-2012, 04:04 PM   #39
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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
07-17-2012, 05:55 PM   #40
AZMOM
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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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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
07-17-2012, 06:19 PM   #41
izzi'smom
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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.
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
07-18-2012, 12:55 AM   #42
Catherine
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Good luck, thinking of you.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
07-18-2012, 06:19 AM   #43
DustyKat
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Good luck for today hun...I hope a discharge is on the cards!

Thinking of you,
Dusty. xxx
07-18-2012, 06:22 AM   #44
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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!
07-18-2012, 07:02 AM   #45
DustyKat
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Thanks for the update hun...

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

Amen! It surely isn't right!

Dusty. xxx
07-18-2012, 08:44 AM   #46
Tesscorm
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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!
07-18-2012, 12:57 PM   #47
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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!
07-18-2012, 02:27 PM   #48
DustyKat
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Yes! Sunshine on the horizon! There certainly is no place like home!

Good luck with the next step JS...

Dusty. xxx
07-19-2012, 12:22 AM   #49
izzi'smom
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yay for home!!!!
Wishing you a wonderful, restful night!!!
07-19-2012, 08:27 AM   #50
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Just checking up to see if you made it home? Plus, to see how you girl is doing?

Farmwife
07-19-2012, 09:41 AM   #51
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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~
07-19-2012, 09:53 AM   #52
crohnsinct
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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...
07-19-2012, 05:13 PM   #53
DustyKat
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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...

Dusty. xxx
07-22-2012, 04:40 PM   #54
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Just catching up on all the threads, hope everything has settled down now!
07-22-2012, 07:48 PM   #55
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Things have been pretty quiet around here since we came home Wednesday ~and I 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~
07-22-2012, 08:11 PM   #56
crohnsinct
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Sounds encouraging and I so hope you get to do something fun!!!!
07-23-2012, 08:49 AM   #57
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Glad to hear things are looking up! Hope all goes well Thursday - test-wise and fun-wise!!
07-26-2012, 05:19 AM   #58
DustyKat
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I hope all is continuing to go well JS!

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

Dusty. xxx
07-26-2012, 06:41 AM   #59
izzi'smom
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also checking in...wishing you luck in the next couple of days!!
07-26-2012, 07:06 AM   #60
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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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