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01-07-2014, 04:41 PM   #1
upsetmom
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Update

I thought l'd give you an update.

Last month we saw the GI and my daughters ESR is still sitting at 40. She's been on Imuran for about 9 months with no change in ESR. He wants to do an MRE to see whats happening in the small bowel so she's booked in for an MRE on the 21st May and will be admitted for the procedure. While she's there he's going to get an Endocrinologist to see her for her delayed puberty. She's been stuck at stage 2 for a long time. I've been asking GP and GI to refer us but l kept getting told they see this a lot and it was nothing to worry about, and she will catch up. Finally something might get done.

Symptoms have been on and off with diarrhea, pain after eating and stabbing pain.

21st May still seems a long way away..
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Daughter dx CD March2012...
(aged 14)

Currently on:
40mg Humira
125mg Imuran




Dx Premature Ovarian Failure 2014



01-07-2014, 05:18 PM   #2
my little penguin
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Wow!!! - May 21st is 5 months away.
DS has never gone more than 3 months without seeing his GI let alone wait for a test.
The longest we ever waited was 5 weeks for a non urgent MRI for something else.
Everytime the GI orders a test we call back and tell the doc how long it will be. If its longer than the doc wants then phone calls are made and it magically moves up.
Does the GI know it will take that long???
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01-07-2014, 05:21 PM   #3
Jmrogers4
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Yes, that seems a long time for inflammation to be going on. Hope you can get it moved up quickly. We just saw the endo for delayed puberty he is just entering stage 3 and we had some more tests (bone age, thyroid, etc.) done on Monday and are awaiting those results.
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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
01-07-2014, 05:39 PM   #4
upsetmom
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Okay now you've got me thinking MLP!

When we saw the GI he said she'll be admitted sometime in late February or early March. I automatically thought he knew that it was in May. I'll have to ring the nurse and let her know.

We do have an appointment to see GI in March.
01-07-2014, 07:23 PM   #5
Catherine
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We await about a week for MRI, but our have been done privately at $360 each.
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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)
01-07-2014, 08:13 PM   #6
upsetmom
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Catherine last time they wanted an MRE done we went privately and got her in straight away but the GI wasn't very happy as they only trust their radiologist.

Tried to ring the nurse but no answer so l sent an e-mail.
01-07-2014, 08:47 PM   #7
Catherine
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The first MRI was booked personally by the GI, and he was asking them who the radiologist was. The second time I just booked the same centre as was used the first time.

A maybe question?

Does preferred radiologist only work in the public system?

There is another advantage of using only the one provider, is the results related back to each other.

Our example:
The 1st MRI, mentions that the problem is area is in the same place as the Ultrasound that was performed 6 month earlier.

The 2nd MRI reports discusses what is different, to the 1st MRI.
01-07-2014, 10:18 PM   #8
Tesscorm
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We also have long waits here... for his last MRI, we took Stephen to the U.S. and paid ourselves because it would've taken 3-4 months to book an MRI.

But, Catherine has a good point about using the same provider. In our case, we had two MRIs from the ped hospital and one from the U.S., our 'new' adult GI didn't have a problem accepting the MRI 'film' from either location but had his own radiologist read all three and then provide his own report.

Re the ESR results... do you have results from other inflammatory markers - CRP and/or FC? Have other inflammatory markers improved?
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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
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01-07-2014, 11:38 PM   #9
upsetmom
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Does preferred radiologist only work in the public system?
I'm not sure.
But he wants her admitted so she can also see the Endocrinologist and have further tests done...so going privately wouldn't even be an option.

Last edited by upsetmom; 01-07-2014 at 11:55 PM.
01-07-2014, 11:41 PM   #10
upsetmom
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Re the ESR results... do you have results from other inflammatory markers - CRP and/or FC? Have other inflammatory markers improved?
Never had a FC done.
Her CRP has never really been raised, its always stayed between 2-8
01-08-2014, 02:26 AM   #11
Ams-Qld
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Hey, sorry to hear how things are going
I wold request a faecal cal. It should be free if through a public hospital but will be only about $40 (even with a health care card) if you check around for the cheapest pathology provider. If it is very raised that might encourage them to do something faster. How is her iron levels??
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Son with Crohn's, Dx at age 10 - 4 years ago. Anaemia of chronic disease (first iron infusion Dec 2013) Peri-anal abscesses (Aug 2012) that formed fistulae (early 2013). Began 8 weeks of EEN in Dec 2013 via ng tube.
Current Meds: Imuran (25mg) morning and night. Previous Meds: Pred, Flagyl, Cipro. Allopurinol.
Please take my thoughts and experiences as mine alone; I am not a medical professional and my humble opinions are not to be taken as advice! Blessings to you and yours!
01-08-2014, 04:19 AM   #12
upsetmom
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How is her iron levels??
Her iron levels are now normal, but on the low end.
01-08-2014, 07:25 AM   #13
imaboveitall
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She ought to have scopes and a pillcam.
V was in hosp in a severe state last May and had abd MRI and MRE both NEGATIVE for inflammation.
I was told this was because mucosal inflammatory changes will not show on imaging, only structural changes. Her GI said he would never rely on these tests alone for diagnosing inflammation, he used them in her case at that time as he suspected stricture or abscess.

Pillcam is the only way to show the small bowel, V's scopes (she's had four) are always normal, both grossly and histologically, BUT her pillcams (2) showed a small bowel in a terrible state.

Disease confined to the small bowel is often insidious.
Oh and V's CRP is always normal too.
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VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
01-08-2014, 11:01 AM   #14
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Can you get put onto a cancellation list? May is really far away! It's worth keeping on phoning them every week so they remember to call if there is a cancellation.
01-08-2014, 09:43 PM   #15
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I hope you can get her in sooner.

Hugs
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
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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
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Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
01-09-2014, 01:44 AM   #16
upsetmom
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No reply from the nurse.
01-09-2014, 05:16 AM   #17
DustyKat
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Good grief upsetmom! May!

I hope you hear from the nurse soon and she gets the message that May isnít an option!

Good luck!

Dusty. xxx
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01-10-2014, 09:43 PM   #18
Brian'sMom
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I wonder if they made a mistake with booking you in May! I hope you can get in sooner. Why do they need to admit you for this test? Even seeing multiple docs should be able to do outpatient. Maybe this is your delay.. the admitting part.
We saw Endocrinologist just to 'rule out' growth hormone issues. Our Endo said (and I think this is true) that IBD kid's won't grow while there is a lot of inflammation. That needs to be under control. Another good thing we found out from Endo was our son's testosterone level. It showed us that it was all normal and the inflammation was his problem for growth and delayed puberty. I hope you get answers soon.
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symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
01-11-2014, 06:42 AM   #19
upsetmom
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I questioned why she was getting admitted for a simple test. His answer was if she's a patient you won't have to pay $200...even though l told him it was going to cost me a lot more than that in motel fees. So l'm not quite sure of the reason behind the admission. But then again last time he ordered an MRE we didn't get it done at their hospital so maybe hes worried we'll go somewhere else..

My daughter has no problems with her height its just her puberty. Shes very delayed and doesn't look anywhere near her age...she looks more like a kid than a teenager.
01-12-2014, 10:11 PM   #20
kimmidwife
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Upset mom,
Keep calling the nurse. Sounds like they have mixed up March and May. Maybe they couldn't read the doctors handwriting!
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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.
01-13-2014, 01:25 AM   #21
upsetmom
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I just received an email saying she'll look into it.
01-26-2014, 03:10 PM   #22
upsetmom
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Its been 2 weeks and no word from the nurse. I'll have to email her again.

My daughters been getting a backache again, and when she walks it cracks.
Off to see the DR today if they're open.
01-26-2014, 09:47 PM   #23
upsetmom
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Dr is sending her for an xray. He said there was tenderness on the left SI joint.
Xrays closed today so can't get it done till the morning. I hate waiting... a million things run through my head.
01-27-2014, 01:10 AM   #24
DustyKat
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I donít want them to find anything wrong upsetmom but then again, answers would be nice. The SI joint is a common area for issues with IBD.

Good luck for tomorrow.

Dusty. xxx
01-28-2014, 03:34 AM   #25
upsetmom
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Nothing found on the xray.

As she's been getting a backache for a few months, l asked if her inflamed bowel could have anything to do with it and he said no it doesn't manifest as a backache...Well he doesn't know l do a lot of reading.

I'll have to try contact the nurse tomorrow.
01-28-2014, 11:53 AM   #26
kimmidwife
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Upsetmom,
LOL guess he doesn't know about our forum! backache is definitely a sign of inflammation. Push for them to bring her in sooner it is ridiculous how long these doctors make these kids wait!
01-28-2014, 12:02 PM   #27
Maya142
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One of my daughter's first symptoms of arthritis was SI joint pain. Nothing showed up on the x rays, but her MRIs showed inflammation (sacroilitis). If your daughter turns out not to have bowel inflammation, it might be worth asking for a referral to a rheumatologist.
Unfortunately, we have met a number of kids with this particular kind of arthritis and Crohn's.
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diagnosed with Crohn's Disease at 16
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01-28-2014, 10:52 PM   #28
upsetmom
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We have a date for MRE 19th February. Its funny how a spot has suddenly become available.
01-29-2014, 04:02 AM   #29
upsetmom
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I've been instructed to take Osmolax with us if my daughter doesn't like the lemon/ salty taste of the solution they give there.

Now l'm not quite sure if she'll like it or not as the last time she had an MRE the mixture tasted like plain water. She said she'd like to drink the one she had last time but l have no idea what it was as it was done somewhere else.

Anyone have any ideas.
01-30-2014, 04:00 PM   #30
DustyKat
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Sometimes plain water is used upsetmom, could she have had plain water?

Mattís contrast was more like a sugary water so I think they may have used mannitol for his.

Good luck!

Dusty. xxx
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