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Crohn's Disease Forum » Parents of Kids with IBD » Summer Time Update for my Farm Kids


 
08-15-2014, 06:35 PM   #61
DustyKat
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So bloods for ANCA/MPO/PR3 Antibodies were done?

EN and PG run parallel with disease activity as does large joint involvement. Axial involvement (spine, wrists, smaller joints) run independent of flares.

Dusty. xxx
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08-16-2014, 07:17 AM   #62
Farmwife
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Well what I see on the papers all say normal levels for those test, Dusty.
Unless their a different names on my paper.
I see.................
Immunology II A
S. Cerevisiae Ab, IgA, S
S. Cerevisiae Ab, Igg, S
CRP
ANA2 Ab
Antinuclear Ab
Anti-DS-DNA, IA, S
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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
08-16-2014, 07:47 AM   #63
my little penguin
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Did they dx her with jra or JIA ??
DS has JSpA under JIA.
Tests would be Ana negative
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08-16-2014, 08:00 AM   #64
DanceMom
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Are those the tests Mayo did? There are so many immune tests, some that have to be sent to special labs like Cincinnati Children's and ARUP. I don't believe all immune deficiencies present with low immunoglobulins.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
08-16-2014, 08:02 AM   #65
DustyKat
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I am not overly up on this stream of tests but I think the first set is the ASCA test, so what is used to help establish a diagnosis of Crohn’s but over time has been increasingly used in other inflammatory responses.

I mentioned ANCA as is it more specific to vasculitis than ANA.

Dusty. xxx
08-16-2014, 08:21 AM   #66
Farmwife
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Sorry MLP its JIA now but I'm still old school and refer to it as JRA.
Plus the PCP orders the labs for test to be done. I don't know why, its all confusing to me.
Dancemom it was all done at Mayo for the labs.
Thanks Dusty


My computer is having issues. The keys g and h have broken and my tablet broke. I have to cut and paste the letters. Do you know how many words have h and g
08-16-2014, 08:25 AM   #67
Catherine
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Too many
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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)
08-16-2014, 08:31 AM   #68
my little penguin
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Too funny on the G and H.
The reason I asked is if you have Ibd and arthritis then it's automatically
JSpA associated with IBD - only sometimes -JAS.
Did you get the JIA book from the arthritis foundation when she was dx.
It explains why the need for the echo etc...
08-16-2014, 11:35 AM   #69
Maya142
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I thought Grace was diagnosed with Polyarticular JIA? I've heard from rheumatologists that very young kids sometimes change subtypes as they grow - particularly from Polyarticular/Oligoarticular JIA to JSpA.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-16-2014, 11:49 AM   #70
Farmwife
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I thought Grace was diagnosed with Polyarticular JIA? I've heard from rheumatologists that very young kids sometimes change subtypes as they grow - particularly from Polyarticular/Oligoarticular JIA to JSpA.
Yes Maya, thats still the official dx....right now. I was told it might be changing as time goes on.
So I guess next visit Ill ask if its changed.
08-16-2014, 12:06 PM   #71
my little penguin
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Sorry FW

Just realized she has early crohn's ( working dx.) so that makes more sense
08-16-2014, 12:15 PM   #72
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Thats ok, you just want to make me type more and paste letters.
08-17-2014, 07:20 PM   #73
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EN still popping up, legs look horrible.
She is using the bathroom even during the night to go pee.
During church service she left 5 times to use the restroom.

Meeting with graces gp to discuss x-ray, EKg and now the GI wants stool testing done. It'll be a busy week.
08-17-2014, 07:38 PM   #74
DanceMom
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Day 3 or 4 would probably be ideal to biopsy. Too soon or too late and there could be some confusion. Unfortunately there seems to be much debate when viewing the slides because skin biopsies seem to be the trickiest to read (according to our docs).
08-17-2014, 08:05 PM   #75
Farmwife
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Oops, I meant of her toes not the EN spots they want the biopsies from.

The Dermatologist said she knows its EN and didn't need a biopsies unless the Reumy wanted one.
08-17-2014, 08:52 PM   #76
DanceMom
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Our dermatologist, GI, and clinic pathologist were positive A had EN. The Rheumo and hospital pathologist were positive she had vasculitis. I'm not advocating you biopsy them, I'm just saying there is no way of being sure what you're dealing with without a biopsy, and even those can be difficult to read. If she has vasculitis on her toes it's plausible that she has it in other areas too.
08-18-2014, 10:22 AM   #77
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Wrong week. I felt like an idiot as she (secretary) told me its next week.
Well at least its not important.
08-20-2014, 04:54 PM   #78
Farmwife
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Wouldn't the order be faxed to the hospital lab electronically?
None of DS's orders go through the ped .
We either get them by mail or they are in the system .
I thought your Rheumo was local .
Nope, not local.
What's more confusing is the GI sent an order for the stool test.
Why cant the Rheumy send one for an ekg? I've called twice and the nurse said if her doc had more questions to call. I know the gp doc will I've me an ear full but I've tried to no avail.


2 EN spots along her spine now. Is that normal? Calling the Derm tomorrow.
08-20-2014, 06:07 PM   #79
DanceMom
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A got them along her spine too. Those always looked awful. Rheumo said that was more typical of vasculitis than EN. He had a whole folder in his cell phone with pics of A's lumps.lol
08-27-2014, 11:50 AM   #80
Farmwife
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grace now as inflammation of the bladder wall and will be seeing the Urologist soon.
She has to go pee every few minutes and is starting to cry and get angry over having to go so much.
EN spots still there and painful.
JIA (arthritis) is affecting all most everything in her body.

Just found out the Rheumy wants to place my DD on Remicade. Still waiting on the finale word.

Another bad day.
08-27-2014, 12:31 PM   #81
Maya142
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Not sure about the bladder wall but I know urethritis can be a part of AS (or Juvenile Spondyloarthropathy---Juvenile AS is quite rare!). She might eventually be diagnosed with that which would make sense, considering the IBD.

Sorry to hear Grace isn't doing well I hope Remicade will be her miracle drug!
08-27-2014, 12:32 PM   #82
DanceMom
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Maybe Remicade will be her "magic potion". Think positive! I would also question whether systemic vasculitis could be a possibility. Grace doesn't seem to be a textbook kind of kid.
08-27-2014, 12:34 PM   #83
Maya142
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Yes, very true - I've heard of kids with "overlap syndrome" with features of several different rheumatic diseases.
M did very well on Remicade and MTX -- I agree with DanceMom, think positive!
Sending HUGS!
08-27-2014, 02:01 PM   #84
Farmwife
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Its official were on to Remicade.


how long did your kid (or yourself) have to wait to start it?
08-27-2014, 04:08 PM   #85
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So sorry to hear she is suffering so much. No experience with Remicade - really hope they can get it started soon!
08-27-2014, 04:48 PM   #86
my little penguin
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Depends on insurance / tests needed
Our insurance covered it without any pre approval needed etc.
He only needed a tb test so that took a few days .
From decision to infusion about two weeks maybe less.
They really wanted him off pred at that point.
What test did they do to determine her bladder was inflamed ?
08-27-2014, 05:52 PM   #87
Maya142
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Let's see - the first time it was two weeks after Humira, the second roughly two-three weeks after Enbrel, and the third in the hospital, 5 days after her Humira shot (and she was put on high dose Remicade - 20mg/kg and solumedrol). It really does depend on insurance (unless she's inpatient).
08-29-2014, 12:55 PM   #88
momoftwinboys
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Hi, Sorry to hear about Grace's continued troubles.

It was about a week for H to start Remicade, mostly related to getting the TB test and results.

Wishing you guys success with Remicade.
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Son (age 13) dx Crohn's October 2011 (age 10)
Azathioprine 10/2011-11/2012
Remicade October 2012
krill oil, multivitamin, liquid Vitamin D/Calcium/Magnesium, zinc, pro-thera complete probiotic.

"The decision to have a child is to accept that your heart will forever walk about outside of your body" Katherine Hadley
08-29-2014, 08:27 PM   #89
Farmwife
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So here we come to the end of yet another summer

grace is so ready to get back to school. She's always loved learning,
my boy on the other hand gripped and groaned the whole shopping trip to pick up the supplies.
Of course it wasn't helping that I was belting out the tune of the Christmas carol, Its the happiest time of the year.
I have decided that Christmas is no loner the happiest time of year........back to school time is. I've tuned into my mother.

Update:
I gave grace her last Humira shot. I told her about the new med to help her but she seemed worked up about the IV part. She's always hated IVs.
Talked the Rheumy nurse and hopefully in the next two weeks remicade will be started. She will start grace on pred next Thursday to brigde the gap between treatments.

They want to do loading doses at 2, 4, 6 and then 8 weeks apart.
Is that normal?That seems like a lot to me.


Its my birthday this week-end and do you know what I want to do.....NAP. Ya, its been a long year.

have a good Labor Day in the USA everyone.
08-29-2014, 08:34 PM   #90
my little penguin
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That's normal loading dose for JIA ...
As far as I know ...
Good luck
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