02-01-2013, 07:19 AM   #241
Niks
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Finally you have something!!! We are waiting too today to hear if they have agreed and MRE for my daughter. Fingers crossed it will be next week too.

Hope you get some answers with her bloods too.

02-01-2013, 07:34 AM   #242
Mylittlesunshine
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Thanks niks. How is your daughter doing x
She has been though a lot I hope u get answers x
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02-01-2013, 07:38 AM   #243
Niks
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She's not even keeping plain rice down!!! So trying Ensure. Went to GP this morning and picking it up this afternoon.

IBD nurse calling this afternoon about their decision about next test (hopefully MRE) this afternoon. Apparently they have a panel meeting this morning! Fingers crossed!!
02-01-2013, 12:49 PM   #244
CarolinAlaska
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J had an MRE in December. She had to take a laxative prior then go NPO (nothing by mouth that day). Once there she had to drink 2 containers of contrast, but she could only do one. When they took her back they put an IV in her, which was the most traumatic part of the day. I can't remember how long the test took, maybe an hour at most. It seemed like forever. This was what happened for a 13 year old. I assume they would put the contrast in a little one by NG tube? Sedation for the study? The MRE was J's first test with the upper and lower endoscopies happening the next day. Our GI ordered them together since we came to Anchorage for 3 days to have it all happen at once. On Monday we saw the GI, Tuesday the MRE and later prep, Wednesday the scopes and home again. The following Friday she had the video endoscopy... Oops, sorry TMI...
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent 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.
02-01-2013, 01:14 PM   #245
izzi'smom
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Izz was 4 for her MRE. She was NPO the morning of...we planning on putting the contrast through her indwelling ng tube, but it came out while they were advancing it, and she promised to drink the contrast. 2 cups (maybe 16 oz each (?)), which made her rush to the bathroom. They put an IV in, injected glucagon (to slow peristalsis) scanned her, injected her with contrast, and rescanned her.

The MRI machine is loud and this scan requires long breath holds; I would suggest practicing (I went in with her and was able to hold my breath if I timed it right.)
It is also not a huge opening...Izz was on her belly with her head facing out of the machine...some little ones may have a hard time.
How old is she? I was told generally speaking kids dd's age "need" sedation; I was fairly confident she could handle it and there was minimal motion on her exam considering the long duration of the breath holds (there would have been breathing motion even with sedation), so I declined sedation.
An MRE examines the small bowel in detail without the radiation exposure from CT/radiographic barium studies. The small bowel isn't visualized completely during scopes; it can only be visualized during capsule endoscopies, CT, MRI/E or small bowel x ray.
Best of luck XX
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02-03-2013, 03:21 AM   #246
Mylittlesunshine
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Update everything for Lucy's scan will have
To be cancelled
As I'm in hospital my husband came home
Friday to find me collapsed in the kitchen
My blood pressure is very high and
My heart isn't beating properly(fast )
I'm awaiting heart scan .
Thank you so much for being such lovely friends
02-03-2013, 03:25 AM   #247
upsetmom
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OMG i'm so sorry ....

I hope everything's ok and you start feeling better soon.
02-03-2013, 04:41 AM   #248
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Very sorry to hear that. Hope you feel better soon!
02-03-2013, 02:29 PM   #249
CarolinAlaska
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That is terrible. I hope you get the care you need. It just goes to show us parents that we have to take care of us, so we can take care of our dear children.
02-03-2013, 06:16 PM   #250
Mylittlesunshine
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Thankyou I really hate being apart from my
Kids especially Lucy as my husband
Isn't used to doing her feeds ect
02-03-2013, 06:31 PM   #251
Farmwife
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Get rest!
How long will you be in there?
Let the hubby worry about your girl.
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I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
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dx Juvenile Arthritis
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dx Erthema Nodosum
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Bladder and Bowel Dysfunction
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Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
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Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
02-03-2013, 06:59 PM   #252
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Sending you healing thoughts! I know it is hard but you need to take care of yourself! I am sure your husband will do fine. They are always surprising us with how much they really know and can do without our help!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
02-03-2013, 07:16 PM   #253
Mylittlesunshine
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I don't know how long in going to be in
I have to go for a heart scan tomorrow
And I'm still on a heart monitor to keep
Close monitor on my heart rhythm
My blood pressure still high.
Hope will know more tomorrow.
02-03-2013, 09:19 PM   #254
Jmrogers4
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Please take care MLS, your hubby will be fine. Thinking and praying for you.
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Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-04-2013, 11:20 AM   #255
polly13
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Hope you are doing better my little sunshine
02-04-2013, 01:43 PM   #256
Mylittlesunshine
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Thanks everyone
I had my heart scan results back
I have a heart condition called
Cardiomyopathy which is my
Heart is enlarged and isn't working properly.
I've got wait to see heart speaicalist they
Referred me as urgent.
Thanks everyone for asking we are still
In shock x
02-04-2013, 01:49 PM   #257
CarolinAlaska
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Thanks for the update, MLS. I'm sorry that it seems to be something serious, but glad that they caught it now before something worse happened. I am praying that you find the right fix for you so you can get back to your family soon!
02-04-2013, 01:53 PM   #258
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Mls,
I am glad you have an answer as carolin said I am sorry it seems something serious but hopefully now they can treat it and you will improve. I will be thinking of you and keeping you in my prayers.
02-04-2013, 04:38 PM   #259
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Sorry to hear about that. Hopefully they will see you soon and work out some treatment to get you feeling better.
02-04-2013, 04:46 PM   #260
Jmrogers4
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Hope they get you taken care of and feeling better soon, sorry you are having to go through this.
02-05-2013, 07:57 AM   #261
Suzysu
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OMG - Ive been away for a few days so only just checking in now - sending you get well soon wishes - as if you haven't enough to be worried about - I hope they get you sorted and home asap xxxx
02-06-2013, 07:28 AM   #262
Farmwife
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I'm so sorry you have to deal with all this.
Take care of yourself!

HUGS
02-07-2013, 01:45 AM   #263
Lewis,s mum
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aw hunny u really have been through the mill havnt u . take time for u and make sure u rest . i was poorly last year nothibg like what ur going throuh i dislocated my knee and had my appendix out my hubby had to take over lewis care he did a fantastic job amd he said he actually felt like he was helping more as i tended to do everythibg cause thats what us mums do lol. ur hubby wil cope he.ll probably realy suprise u steven even has tips for me he.ll say go amd get me 8ml of paracetamol and a buscopan emma we.ll try that first . try not to worry about your daughter everything will work out fine . sending big hugs to u .xxx
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lewis dx age 5

had first peri anal abcess age 2.
fought for his dx for 3 years
disease is located in . his peri anal, rectum colan and small bowel
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infliximab 6 weekly
Azathioprine 50 mg daily
omeprazole 40 mg daily
buscopan 30 mg Daily
movicol 5 sachets at present a day
02-07-2013, 07:14 AM   #264
Mylittlesunshine
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Thanks everyone
I've been moved to a heart ward now
Still having test done to see what
Type of cardiomyopathy I have
Which will tell them what caused it.
Lucy is doing ok still waiting on biopsys
And she is missing me badly.
I'm do depressed at the moment and
Feeling really low and scared that it
Could happen again.
I'm just so glad my husband had took
Lucy out with him when I collapsed
Because I was out for about an hour.
02-07-2013, 02:15 PM   #265
Jmrogers4
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I really hope you get answers for yourself and for Lucy soon. I've been thinking about you both
02-07-2013, 02:21 PM   #266
upsetmom
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Thinking of you....
02-07-2013, 02:31 PM   #267
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I'm so very sorry for what you are going through.
02-08-2013, 02:25 AM   #268
CarolinAlaska
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I'm glad they found the problem quickly and also glad that you didn't die when you collapsed... How scary for your dear husband. I'm glad you are in good hands. Get the rest you need and try to find 10 good things to be thankful for each morning when you wake up to help ward off that sneaky depression that is trying to take root...
02-11-2013, 02:23 PM   #269
Mylittlesunshine
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Hi everyone
Just another update
10 days today and still on the
Heart ward,
Now I'm having test for checking
My kidneys as the heart condition
That have my have been caused
By a kidney condition.
I'm getting very fed up now
My blood pressure is still very high
And feel I'm not much further
Than I came in 10 days ago.
Sorry for the moan x
How are you all x
02-11-2013, 03:03 PM   #270
Jmrogers4
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Thanks for giving us an update we have all been thinking and praying for you.
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