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


 
08-07-2014, 03:40 PM   #31
Farmwife
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Meant with the new GI and thought she was great.
So why the smileys???
In her professional opinion and years of experience she does not believe she has
True EGID's.
She did however label her with microscopic colitis in the ibd family.
She feels Crohn's but right now it microscopic and time will tell.
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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
08-07-2014, 04:27 PM   #32
Farmwife
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The shocker was her rectum when she looked she found a fissure and inflammation in the area. What's the shocker Grace said it doesn't hurt right now.
The new gi wrote a seven day script for hydrocortisone acetate suppository.


Has any one used these suppositories? Do they work that fast?
08-07-2014, 04:30 PM   #33
Maya142
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M's GI prescribed hydrocortisone enemas for two weeks, so I guess they must work fast?
M has (so far) completely refused to use them so I have no idea if they actually work.
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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
08-07-2014, 05:32 PM   #34
my little penguin
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DS used canasa plus the hydro creme at one point .
It didn't help much but he was a big mess so .
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08-07-2014, 06:16 PM   #35
Sascot
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Glad the GI was nice. Hope the suppositories work well, we've never used any.
08-08-2014, 07:05 AM   #36
Johnnysmom
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FWIW, my non IBD daughter suffers with the same UTI symptoms. Mainly in the summer for some reason. She has white blood cells in her urine, urgency, frequency and pain when urinating but when the culture the urine it is always clear of bacteria. They keep saying constipation too, but she is not constipated! She has also been having acid reflux lately which for her causes nausea at night. The two symptoms seem to crop up at the same time but I don't know how they could be related. Her labs are good but her WBC, and Neutrophils are very low. Her lymphocytes are high. B/C ratio is high too. We are waiting on Fecal cal but her Pediatrician thinks she is fine. They can't explain all the weird symptoms she is having and I think they roll their eyes when I call but something is going on with her. I sympathize with you FW, I hope they figure things out quickly! Keep us updated!
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Dx Oct 11 2011 Crohns disease
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08-08-2014, 07:17 AM   #37
Farmwife
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Same with Grace. She always has low counts.

The new gi doc said she wonders if the constipation is in the rectum not the colon.
Only an X-Ray will show that.

I forgot to update about my son

The new gi does not think it's gerd. So the plan is to reduce over a could months his ppi's and see how he does. If he gets sick she named a few test she wanted to try.
I'm a bit scared but a she said that we need to see what his body is going to do without the ppi's.
08-08-2014, 07:20 AM   #38
Johnnysmom
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Have they explained Grace's low counts?

The GI is concerned with Johnny's low WBC and neutrophil count and his are higher than Brooke's! She isn't seeing a specialist yet though
08-08-2014, 07:44 AM   #39
Farmwife
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The few times I asked they say it's expected with her meds but I always say she had counts before the meds. Still their not concern.

Can I ask what your dd levels are at?
08-08-2014, 11:38 AM   #40
my little penguin
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FW neutrophils and wbc is suppose to go down while on humira and really go down when combined with Mtx that is why they watch those bloodwork numbers .
Even if something else caused it before and was fixed they can't really tell by the numbers so to speak due to her current drugs .
08-08-2014, 12:18 PM   #41
Johnnysmom
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Brooke's numbers
WBC 4.2 (range 4.5-13.5)
Neutrophil absolute 1.51 (range 1.80-8.0)
Lymphs 54 (range 34-42%)
Basophils 2 (range 0-1%)

Johnny's numbers (same range as Brooke)
WBC 4.3
Neutrophil absolute 2.58

The Pediatrician said Brooke's numbers are consistent with her having a virus. She has no signs of a virus though. I am not sure why she is not concerned at all.
08-08-2014, 06:38 PM   #42
Catherine
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If Brooke numbers are consistent with a virus, wouldn't you retest after enough time for virus to clear.
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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)
08-12-2014, 06:11 PM   #43
Farmwife
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My girl was dx today w/ Erythema Nodosum.
Plus some type of Vasculitis on the toes.
The dermatologist dx it and will let all the docs know.
Also they want biopsies done the next time they pop up.
Saw the Rheumy today the JIA is back and causing problems in the spine.

The Rheumy upped the Humira to every seven days.


Not a good day.
08-12-2014, 06:31 PM   #44
DanceMom
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Ask for an incisional biopsy as opposed to a punch biopsy. The incisional biopsy will go deeper and be able to determine if you're dealing with EN or vasculitis. We never got a clear cut answer with either type and so the fear of vasculitis still looms (and she has 2 scars). Hope her lesions clear soon and aren't too painful for her!
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
08-12-2014, 07:08 PM   #45
my little penguin
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Yeah that
Given her age she will probably be put out anyway.
08-12-2014, 07:17 PM   #46
DanceMom
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We did both without anesthesia and it was fine. A laid back, played her iPad, and was very calm. The surgeon said that is not the norm though. I left it up to A and she insisted that she'd be fine. She was a little sore afterwards but it healed nicely (both times). Internal stitches are much easier to care for though.
08-12-2014, 09:44 PM   #47
kimmidwife
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FW,
Sorry to hear this! I was wondering did your daughter ever have immunologic testing like dance mom's daughter? A couple of days ago stumbled on an article about kids with immune disorders being diagnosed with Crohn's and the like and never being properly diagnosed. If I find it again I will post it. I was thinking about your girl because she has had symptoms for so long and she is so young and the medicines don't seem to be working well for her.
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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.
08-13-2014, 12:06 AM   #48
Maya142
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Sorry to hear Farmwife, your poor little girl! Hope the weekly Humira helps.
08-13-2014, 03:31 PM   #49
Sascot
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So sorry to hear that! Thinking of you, wishing things could improve soon
08-13-2014, 03:32 PM   #50
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That's what confuses me Why if it's low grade or microscopic in Grace's case is this so complicated? Why isn't her symptoms mild? Why do these kids with "low grade" have to be prone to everything???

Sorry my rants over. Just stressed with what will take place tomorrow.
Sending loads of hugs to you Fw.

I personally think there may 3 reasons why this happening to your lass, although knowing it certainly doesnít lessen the pain and heartbreak.

1. EIMís have the potential to be present for months through to years before any significant intestinal damage is seen.
2. The majority of paediatric IBD presentations have large bowel involvement as opposed to adult which have a higher rate of small bowel disease. This leads into number three.
3. EIMís as whole have a greater association with large bowel disease.

In my thoughts.

Dusty. xxx
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08-13-2014, 07:05 PM   #51
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I'm wondering if you had the extra immunologic testing, too, like kimmidwife mentioned above. We had that testing this week, no results yet. Also a young case.

Poor little farm girl.
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
08-13-2014, 07:44 PM   #52
DanceMom
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What tests did you have done Pilgrim? Do the docs think your daughter has an immune deficiency?
08-13-2014, 08:32 PM   #53
Farmwife
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Immunologic testing was done by Mayo. All normal.

EN still popping up.

So a simple (I know your not doctors) questions,

Could the EN mean the IBD is still active or can it happen on its own?

Is the vasculitis part of an EIM or could it be from the drugs?

I will be calling the docs tomorrow, just trying to make a list of questions.
08-15-2014, 12:05 PM   #54
Farmwife
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Rheumy want an echogram and x-ray done. Am I missing something ? Always something.
08-15-2014, 12:37 PM   #55
my little penguin
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X-ray of what ?
08-15-2014, 12:41 PM   #56
Maya142
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M has had an echocardiogram too - her rheumatologist wanted to rule out certain rheumatic illnesses that affect the heart - wegener's granulomatosis (which is a type of vasculitis I think). I'm sure Grace's rheumo is just making sure that there is nothing else going on
08-15-2014, 02:32 PM   #57
Farmwife
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Chest x-ray mlp.
I'm sure your right Maya, the doc is being cautious.
08-15-2014, 03:05 PM   #58
Farmwife
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The PCP wont do the order because the Rheumy never sent the order.
08-15-2014, 04:54 PM   #59
my little penguin
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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 .
08-15-2014, 06:23 PM   #60
DanceMom
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Yep, A had an echo to check for systemic vasculitis. However, cardio said it would only catch severe vasculitis that had progressed for quite some time.
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