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01-07-2013, 11:54 AM   #61
Mylittlesunshine
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@dusty thank you for all the information
I will try and make time tonight to look at the link
01-07-2013, 11:55 AM   #62
Mylittlesunshine
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Polly13 thsnkyou for the welcome its lovely
To meet you. How is ur little polly x
01-07-2013, 12:04 PM   #63
Mylittlesunshine
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Ok Update from GI appointment today
First sent for bloods
Before returning to clinic
Two hours later and we get to see GI
He explained that he wanted to wait for
Bloods.
Anyway he said that stool samples came back
Negative for infection but the one that checks
For blood came back positive
I asked where he thought the blood was coming
From he said he wanted to wait for
Scopes.
The bloods some of them came back he said
Inflammation markers where showing 22
I think he called it CR something can't remember.
Ok now I want to ask advise.
He gave me two option cos he she has scopes
Next week he don't want to start her on
Meds , so he asked if I would be willing to do
EN to give her bowel rest and more fluids than she is
Taking as she isn't eating will help with her weight, she lost 2 kg
In just over week. What do you think ? He said we
Could do the weight and see approach untill
Scopes. GI will call tomorrow for decision x x
Please any help and advice sorry to keep a
Asking not sure what to do x x thanks
01-07-2013, 12:18 PM   #64
Mylittlesunshine
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I forgot to ask can anyone explain the
Benefits of EN, and has anyone had
Reactions or unwanted symptoms.
Thanks
01-07-2013, 12:42 PM   #65
Clash
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My son hasn't utilized EN, I just wanted to send some hugs and support your way. The lab result he was referring to was probably CRP? It picks up any type of inflammation in the body. If you click on the highlighted word in my post it will give you more detailed information about it.
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C age 19
dx March 2012 CD

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Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
01-07-2013, 12:57 PM   #66
Farmwife
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Hugs

I just started a thread on Toddlers and EN.
Some good info given so far.

Just to let know my Grace had normal CPR.
So normal doesn't mean no problems.
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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
01-07-2013, 04:07 PM   #67
Mylittlesunshine
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Farmwife
How is grace coping with EN? Has she had any
Side affects or problems.
I still haven't come to a decision on what is best x
Hugs to u an grace x x
01-07-2013, 04:20 PM   #68
Farmwife
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Hugs

Here's some links

EN forum on this site
http://www.crohnsforum.com/forumdisplay.php?f=161

DustyKat overview of EN-Read it!
http://www.crohnsforum.com/showthread.php?t=23607

My new thread on EN for toddlers
http://www.crohnsforum.com/showthread.php?t=45435

I don't know if you've read these yet? EN has NO side effects. It has the same success rate a pred to reduce inflammation for the first use. It supplies ALL nutritional needs! It worth it even if it doesn't bring her into full remission.

However, I'll have to ask....DustyKat, MLP or anyone
I don't know if starting EN BEFORE scopes would mask what they find?
01-07-2013, 04:34 PM   #69
Mylittlesunshine
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Thanks farmwife x how is grace doing on EN
X
01-07-2013, 04:50 PM   #70
EthanClark
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My 3 year old son started EEN at the end of December. His story is on FW's new EN for toddlers thread. He is doing great on it and has felt so much better. He does have quite a bit of distention still that I need to look into but otherwise he is great. The distention has been a symptom of his for months prior to EEN so it is not a side effect of that. I do wonder like FW if starting it before the scopes is a good idea or not. After them I would say YES do it.
01-07-2013, 04:59 PM   #71
upsetmom
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I don't know if starting EN BEFORE scopes would mask what they find?
I was thinking the same.
01-07-2013, 05:10 PM   #72
Farmwife
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Good. Thanks for asking!
01-07-2013, 05:11 PM   #73
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I was thinking the same.
Thanks. I'm do for a good idea! I try to have once a month!
01-08-2013, 01:43 AM   #74
DustyKat
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The scopes are next week? If so I think it would be okay to start EN now.

Dusty. xxx
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01-08-2013, 02:58 AM   #75
Mylittlesunshine
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Thanks everyone for help and advice x

@dusty that's what I was worried about
That if EN was started would it affect
Scope results x
Think I'm going to double check when
GI calls if it isn't going to affect then
I'm going a head with EN I hope give
Some relief as my daughter is loosing
Weight by the day and toooo many
Nappies . X
01-08-2013, 03:17 AM   #76
Sascot
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Not sure whether EN would affect the scopes, but my son did EN for 8 weeks exclusively via the NG tube. It certainly worked for him and allowed him a good few months without any symptoms at all (he has a mild case). I agree it's worth doing if no affect on the scopes! Nice to know they are getting all the nutrition they need
01-08-2013, 04:34 AM   #77
Catherine
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We did 3 serves of ensure with normal meals leading up to scopes. The gi told us straight after scopes that he was sure it was Crohn's but no meds given until after MRI a week later as GI did not what healing in occur before MRI.
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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)
01-08-2013, 06:33 AM   #78
Mylittlesunshine
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I've just had call fro GI, I asked about the EN
Affecting the results if scopes, he said in his
Opinion he thinks it won't effect the scopes.
So we are going ahead with EN,
Got to wait to hear from dietian as my DD
Is on neacate LCP formula not sure if they are going
To stick with this or add another formula or change
Completely, also got to wait to hear from GI
Nurse to see when we go in as day case to
Have tube fitted and be tought what to do,
As my DD had tube only when ever she was
Admitted to hospital.
I JUst want to say a big thank you to everyone
For the kindness u gave shown me x x
01-08-2013, 05:39 PM   #79
Mylittlesunshine
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Just a quick update for bed
We go for appointment to see dietian tomorrow
To discuss what formula and plan x
Then I was told that Thursday or Friday
We will return for tube fitted.
Lets hope we get sleep tonight x
01-08-2013, 05:40 PM   #80
Farmwife
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I hope all goes well tomorrow!
01-08-2013, 05:56 PM   #81
Crohn's Mom
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Good luck with the EN, I hope it brings some relief !
01-09-2013, 03:12 AM   #82
Mylittlesunshine
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Thanks everyone, I really am nervious
About the tube being fitted.
01-09-2013, 03:33 AM   #83
Sascot
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Good luck getting the tube inserted. I hope it goes smoothly and the EN starts helping with her symptoms soon!
01-09-2013, 04:48 AM   #84
upsetmom
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Good luck i hope everything goes well...
01-09-2013, 06:48 AM   #85
DustyKat
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Good luck hun......I hope all goes wonderfully well.

Dusty. xxx
01-09-2013, 08:32 AM   #86
Mylittlesunshine
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Thanks dusty and everyone x
Back from the dietian appointment
My daughter got weighed again and she
Has lost another half kilo
She is now 11.2 kg.
we go tomorrow morning for tube fitting
Just hope this helps.
My daughter is not feeling so good today
She is complaining her knees hurt with tummy
Pains and D nappies.
We will be keeping her on neocate for now
Untill she get used to the feeds.
01-09-2013, 02:54 PM   #87
Mylittlesunshine
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So nervious about tomorrow and wondering
What will future bring for my daughter.
01-09-2013, 03:11 PM   #88
upsetmom
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..its only natural to be nervous.
I use to worry a lot...now i just take things day by day
01-09-2013, 03:22 PM   #89
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Her future will hold what you teach her my new forum friend.
If you teach her she is a chronically ill child, she'll learn to be so.
If you teach her the sky's the limit even if she has limits,
you'll see her fly higher in her life than you ever dreamed she could.

These kids are amazing and leave a sense of awe with every accomplishments

You little one will be no different.


Hugs
01-09-2013, 03:42 PM   #90
Mylittlesunshine
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Thanks upsetmom
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