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Crohn's Disease Forum » Parents of Kids with IBD » CT scan - some thickening of proximal duodenum?


 
03-04-2013, 04:46 PM   #61
Jmrogers4
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Niks
Hoping you are Oxford right now and finally getting some answers and your daughter some relief.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-04-2013, 04:49 PM   #62
Niks
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Carol, I really don't know!!

We went to GP who sent an urgent referral by fax. She went off to work. Had a call from her manager saying she'd collapsed. She wanted to call an ambulance but I persuaded them to hang on. Picked her up. She's now in Oxford A&E.. Not a happy bunny but she's there!!!

Will let you all know what happens x
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Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis



Peristeen Irrigation every other day.
Citramag/Picolax

Waiting for bowel stimulator!
03-04-2013, 04:54 PM   #63
CarolinAlaska
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I'm so glad she is where someone might open their eyes and take a good look at her! Bring a picture of what she looks like healthy. That will get their attention too. I hope things turn around for her soon. Let us know. She's in my prayers!
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.

Last edited by CarolinAlaska; 03-04-2013 at 08:16 PM.
03-04-2013, 04:57 PM   #64
Catherine
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Niks

Not glad she collapsed, but glad she is at Oxford. Did you get a copy of the urgent referral fax. If so it may be something to give the A&E doctor.


Wishing you all the best. Remember no matter what she says, you and her work believe she should be in hospital.

Think of you and your family.
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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)

Last edited by Catherine; 03-04-2013 at 10:15 PM.
03-04-2013, 05:21 PM   #65
Jmrogers4
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Well said Catherine.
Collapsing at work equals hospital. Hope thing really start moving along now.
03-04-2013, 05:40 PM   #66
Sascot
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Wishing you luck! Hope they do something asap
03-04-2013, 05:43 PM   #67
my little penguin
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Hugs
Hope things move in the right direction
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03-04-2013, 05:56 PM   #68
izzi'smom
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Hate the way it had to happen, but glad to hear she's there...best of luck!!
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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.
03-04-2013, 06:25 PM   #69
Tink572
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Sounds like she is right where she needs to be. Hope she can get some answers and much needed relief.
03-04-2013, 07:03 PM   #70
upsetmom
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...I hope they finally do something
03-04-2013, 08:21 PM   #71
Niks
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Just home, Jaime in Emergency Assessment. Has had bloods and xray, they were all okay and because they were it made her cry, saying that no one will believe her and she just wants to go home.

Also IV made her cry, her veins are just so small and collapse so easily. They struggled to get bloods, and the IV fluid and pain relief was really hurting, has been slowed right down and she seems better with it.

She has seen several Doctors, ALL of them have asked if she has had MRI/E and are pretty shocked that she hasn't two have asked if she has had the pillcam.... Errrr NO!

One lovely Doctor saw she was upset and came over, he explained that a lot of people that have IBD have normal results. It doesn't mean that she's well!!! OMG that is the first time a Doctor has said that to her. THANK GOD at last! One Doctor asked her when was the last meal she'd eaten that she'd kept down. We really couldn't remember!!

The Gastro Team are seeing her first thing in the morning. I intend to be there! It takes about an hour and 10 mins to get there, but if early at least there won't be any traffic.

Anyway thank you all you lovely people for your support, encouragement and advice! I really think you all helped us make the right decision for Jaime, and I hope now that they can finally help her!

03-04-2013, 08:24 PM   #72
my little penguin
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Sooooo glad they are finally looking
03-04-2013, 08:26 PM   #73
Farmwife
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YA! All it takes is one doc to listen. GOOD FOR HIM! I hope you get answers soon. We'll all be waiting! HUGS
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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
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03-04-2013, 08:56 PM   #74
dannysmom
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Thinking of you and so hoping they figure out how to help her!!
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Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
03-04-2013, 09:00 PM   #75
Clash
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So glad they are listening and hopefully giving her the comfort she needs. Poor thing to cry over normal results, poor sweet baby. I know you are probably completely worn out, I hope you get some rest tonight. I hope they figure things out quickly so that she can have some relief.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
03-04-2013, 09:13 PM   #76
izzi'smom
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Thinking of you
03-04-2013, 09:18 PM   #77
Catherine
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Thinking of your sweet girl.
03-04-2013, 09:52 PM   #78
Jmrogers4
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Thinking of you and hope you are getting some rest. Glad a doctor is finally listening to her
03-04-2013, 10:42 PM   #79
CarolinAlaska
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Praise God for doctors who will listen and help! I'm so glad she is in good hands! It sounds like this place isn't convenient, but I'm so glad she is there! I hope the docs don't try to send her back locally. If they do - fight it with all you've got! I had tears in my eyes when I read that Jaime was sad that her labs were normal. I'm so glad that someone came and reassured her that she isn't going to be passed over again. I'm glad she's got some fluid going in, even if it is at a reduced rate. I hope you can get some good rest tonight too.
03-04-2013, 11:30 PM   #80
Kimberly27
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Thank goodness someone is finally listening! What a weight off your heart!

When you say you're at the Oxford A&E, does that mean you're at the Oxford University Hospital?

Kimberly
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Mom of 17 year old son with Crohn's
2000 mg Pentasa
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Metronidazole (Flagyl), Ciprofloxacin, Levofloxacin, Xifaxin, Zosyn, Augmentin-ES, VSL#3
03-05-2013, 12:25 AM   #81
Niks
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Yes Kimberly

It's John Radcliffe, which is Oxford University Hospital.

Thanks everyone, heading back soon! X
03-05-2013, 04:24 AM   #82
Niks
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Unsurprisingly Jaime's bp and sugar levels are through her boots! They gave her Lucozade to try and help sugar levels, she promptly vomited! People dashing round after her, finally she has people sitting up and listening!!
03-05-2013, 09:43 AM   #83
Devynnsmom
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Niks, I am SO glad they are finally listening!! ((((((hugs))))) sorry it took her collapsing for someone to listen.
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Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
03-05-2013, 10:18 AM   #84
Mylittlesunshine
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Hi niks sorry I'm late catching up x
How's Jamie doing now?
How are you ?
At least she is in the best place
And I pray you get some answers
Love n hugs to you both x
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03-05-2013, 10:28 AM   #85
Niks
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J still having trouble with IV, they're going to put a new one in. We've had a couple of scary moments. After one of her IV drugs she suddenly couldn't see.. She was in major panic. Sight came back after 20mins.

She collapsed too and had nurses running everywhere.

Gastro team came this morning, he is starting from scratch and doesn't believe coeliac diagnosis. If no better by tomorrow putting tube in bypassing stomach

Should know tomorrow what tests and when.. She's really not well but at least someone is trying to do something now!!
03-05-2013, 11:05 AM   #86
Jmrogers4
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So glad she is finally getting some help and sounds like a smart doctor to start from scratch. Praying and thinking of you both
03-05-2013, 11:41 AM   #87
Kimberly27
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Thank goodness for university hospitals! I'm so glad you're under excellent care! We are all with you in spirit.

Kimberly
03-05-2013, 11:42 AM   #88
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Niks - the drug they administer where she couldn't see is most likely called cyclizine - it's an anti sickness drug that causes me to practically lose my eyesight and makes me go completely loopy or 'high' for about 25 mins. Although it does stop the nausea, there are other anti sickness drugs available so try and remember to mention this to the doctors the next time they are prescribing or admininstering anti sickness
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Crohn's Disease - diagnosed 2001.
Small bowel resection 2003 & ileostomy for 6 months.
Strictureplasty laparotomy in 2012.

Humira - Feb 2013 - Jan 2017, then failed.

Flare in large bowel Jan 2017 - Oct 2017. Failed attempts to get inflammation under control using Vedolizumab and Ustekinumab.

Surgery Oct 2017 to remove whole large bowel, and fit a permanent ileostomy.
03-05-2013, 11:49 AM   #89
Niks
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She's allergic to cyclozine, she doesn't have it. It was hydrocortisone.

They are testing for Addison Disease. Know nothing about it, but if that is problem it is apparently easily treated!!
03-05-2013, 11:57 AM   #90
Jmrogers4
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Just had to google that, had never heard of it. Symptoms sure seem to fit. Hope you get answers quickly.
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Crohn's Disease Forum » Parents of Kids with IBD » CT scan - some thickening of proximal duodenum?
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