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10-29-2013, 11:08 AM   #151
my little penguin
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OBJECTIVE: To evaluate different methods of examination of the bowel in suspected inflammatory bowel disease. DESIGN: Prospective investigation of all children over a three year period with suspected inflammatory bowel disease. A technetium-99m-HMPAO labelled white cell scan (Tc-WCS), barium follow through examination (Ba-FT), and colonoscopy plus biopsy were undertaken. SETTING: Great Ormond Street Hospital for Children, London. SUBJECTS: 39 children (20 male and 19 female), median age 12.1 years (range 3.9-15.1 years). MAIN OUTCOME MEASURES: There was total agreement in 21/39 cases, positive in 16, and negative in five. Of 31 histologically proved cases, positive results were obtained in 28 Tc-WCSs (sensitivity 90%), 10 of 24 Ba-FTs (sensitivity 42%), and 27 colonoscopies (sensitivity 87%). CONCLUSION: The Tc-WCS is sensitive, specific, and non-invasive and should be a first line investigation. Ba-FT with a high radiation burden and relatively low sensitivity requires its role to be redefined. Colonoscopy, with endoscopic biopsy, has a high pick-up rate where facilities and expertise exist.

From
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1511611/
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DS - -Crohn's -Stelara
10-29-2013, 11:37 AM   #152
DanceMom
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A just finished a 14 day course of Flagyl and is also on Pentasa. I'm not sure if she has inflammation at this time but something must be causing the diarrhea. Her complement c3 was low, so according to what I've read if she does have IBD it isn't active at this time.

Her puzzle is in a million pieces and nothing seems to fit together.....very frustrated....
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
10-30-2013, 05:25 PM   #153
DanceMom
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Okay....I have to share this because I know many of you will appreciate!

A was recently on Flagyl and I always snickered at how she mispronounced it as "Fragile". What made it even more funny was that the Rheumatologist pronounced it the same way, lol. So....this gave me an idea for A's adjective costume she has to wear to school tomorrow. All third graders have to choose an adjective, design a costume that portrays that adjective, and have an adjective parade through the school. Well A is going as "FRAGILE"! She will be bubble-wrapped (yes! I've always wanted to do this to her!) and have a sign that says "Fragile! This end up!"
10-30-2013, 05:42 PM   #154
Mehita
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Love it!
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
10-30-2013, 05:51 PM   #155
Niks
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Love the 'fragile' fancy dress!! Fab.

Nothing piecing together! Know that feeling..
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Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis



Peristeen Irrigation every other day.
Citramag/Picolax

Waiting for bowel stimulator!
10-30-2013, 08:45 PM   #156
kimmidwife
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About the tetanus if her titers were low then she probably needs a booster. Not sure why he checked but it is good he did. When she is feeling better it probably would be good to get her a booster. I am curious as to why he is now second guessing the Crohn's diagnosis. Not sure about the WBC scan though. When do you go for the second opinion?
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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.
10-30-2013, 09:30 PM   #157
DanceMom
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I don't think he has ever been 100% confident she has Crohn's. She certainly isn't a textbook case. Her biopsies show either non-specific inflammation or are completely normal, and CRP and Fecal Calp are always normal as well. I swear, her inflammation plays hide-and-seek! She has constant diarrhea (which is now completely liquid), bloody stools, erythema nodosum, and a fissure that is starting to reappear for some reason. Just not 100% sure that reason is Crohn's. I know they are looking into some other autoimmune disorders as well.

We leave for the second opinion in Atlanta next Tuesday and will be seen on Wednesday and Thursday. I'm ready to just get this over with.
10-30-2013, 09:34 PM   #158
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Dance mom,
I am really eager to hear about your second opinion as it looks like we may be heading that way ourselves. What made you guys pick Atlanta for that second opinion vs CHOPs, Cincinnati! or Boston. I am looking at these trying to figure things out. Where in Atlanta are you going?
10-30-2013, 09:43 PM   #159
DanceMom
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Our GI set up the second opinion for us. We are going to see Dr. Kugathasan at Children's Physician Group/Egleston. Our GI has sent another "non-textbook" patient there and Dr.K was able to confirm his diagnosis and determine the best treatment plan for him. The drive won't be too bad and they accept our insurance so it just seemed to make sense for us.

Why are you looking for a second opinion?
10-31-2013, 09:55 AM   #160
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I am unsure about this gastroparesis diagnosis. She also has had continued pain in spite of the Crohn's being in remission. I just wonder if there is something we are missing.
10-31-2013, 11:27 AM   #161
DanceMom
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A usually has pain too with no obvious cause. I know the GI thinks she has IBS as well and I don't necessarily disagree with him. I think there is more to it than just IBS though so I've never settled for that explanation alone.
10-31-2013, 01:53 PM   #162
DanceMom
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Dr. K just called. Looks like we will definitely be having the white cell scan and another pill cam. He said he believes her Crohn's is in the small bowel so another set of scopes would be pointless. Hopefully she can hang onto this pill cam for longer than 3 hours and 15 minutes! lol
10-31-2013, 09:36 PM   #163
Farmwife
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Just checking in.

I'm sorry A is still struggling. I hope the pill camera shows something the would help explain her pain.
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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
10-31-2013, 09:41 PM   #164
DanceMom
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Trick-or-treating tonight was a disaster. Her wrist has been bothering her and I ended up carrying her candy bag. Her bottom started burning/itching and she just wanted to go take a shower. She somehow got terrible heartburn and we kept having to stop until the pain would ease up. And the whole time she was worried she'd need to use the bathroom and wouldn't make it to one in time. Whatever disease she has SUCKS!
11-01-2013, 10:05 AM   #165
Mehita
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Aw, so sorry, DanceMom. The last three Halloween's have been disasters for us. The one year he did feel good and go trick or treating we really did it up for him to make it special so he wouldn't be so bitter towards the holiday. Maybe consider that for next year. Now all he talks about is the good year and has either blocked out or doesn't remember the bad ones.
11-02-2013, 06:17 AM   #166
DustyKat
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Oh my goodness DanceMom, I am so very sorry to hear of all that A is going through and then a sad Halloween to top it off. Poor love.

Hoping, wishing and praying that the second opinion gives you rock solid answers and an action plan that gives A long and lasting relief.

Thinking of you both.

Dusty. xxx
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11-02-2013, 06:51 AM   #167
DanceMom
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Ugh! She has a fever again! It is 100.7 this morning. Looks like we are in for a miserable weekend.
11-02-2013, 10:48 AM   #168
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Sorry to hear she isn't doing well. Sending healing thoughts
11-03-2013, 07:30 AM   #169
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Hi DanceMom,
How is your sweet girl doing? Hope her temp is down and she's doing better than last week!
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mom to LJ 16 (dx 12)
Prednisone 1-30-14 to 10-14
Current meds
Pentasa
Folic acid
Iron
Methotrexate
Back on Humira 8/22/14
Failed
Remicade 11/22/13-7/24/14
Flagyl/Cipro
Imuran
Humira 7/13-11/13)
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11-03-2013, 09:06 PM   #170
DanceMom
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It was definitely a rough weekend. A stayed in bed most of the day Saturday. I finally coaxed her out around 8 to sit on the couch and watch a family movie. Today she got up and did some things because she thought she was feeling a little better. Then her stomach started hurting again and back to the bed she went. Her temp is down to 99.2 so I'm hoping she is well enough to go to school tomorrow.
11-04-2013, 05:00 AM   #171
DustyKat
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Thinking of you DanceMom and hoping that A is feeling better today.

Dusty. xxx
11-11-2013, 01:41 PM   #172
DanceMom
Senior Member
Our local Rheumatology nurse just called and said A needs a booster for tetanus and pneumovax. Apparently her labs indicated that her levels were low. Guess we'll make an appointment with the Pedi and add the flu shot in there as well. She's not going to be very pleased with this news.
11-12-2013, 09:40 AM   #173
DanceMom
Senior Member
A's joint pains are getting worse and I think it is due to the EN. Yesterday she had trouble running her laps at PE (and she loves to run) and this morning 3 new EN spots appeared on that knee. She's also down to 49 lbs despite having a pretty good appetite. She was 53 lbs one month ago at the time of her scopes. And every day is a battle with headaches, stomach aches, and a sore throat. I'm just venting. Her next GI appointment isn't until the 4th of December and I can only imagine how she'll feel by then.
11-12-2013, 01:42 PM   #174
Mehita
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Remind me again what she's on currently? Do you have to wait until the 4th? Can't they see her sooner?

Our GI office gives priority to kids who are flaring or in pain. Sometimes same day appts even.

Poor thing.
11-12-2013, 01:50 PM   #175
DanceMom
Senior Member
She's only on Pentasa right now (6-mp caused liver toxicity). Our GI is waiting to hear back from the IBD team in Atlanta before making any medication changes. Apparently her diagnosis is still up in the air. Nothing like being told that your child needs to get more sick so things are more clear cut....
11-12-2013, 06:40 PM   #176
my little penguin
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So sorry to hear-
I have btdt before on kiddo not sick enough.
ugh
hope the times goes by quickly.
I would still update the GI on her status at least once a week ( or more) so they can pull her in if need be while they are making decisions.
I have done this with Ds when things were all over the map.
11-12-2013, 07:44 PM   #177
Farmwife
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btdt too.
I always fear when I heard "not sick enough", my goodness how sick do you want her.
Now we're in the worlds of "which one does she have now".
Is it just EGID's and not IBD, is it IBD now and no longer EGID's
or is Grace a new breed of bowel diseases altogether.

Hugs, you better be sticking around.
If they haven't kicked me off you should be safe.
11-15-2013, 07:15 PM   #178
DanceMom
Senior Member
A got her vaccines today (pneumovax, td, influenza). That was about 3 hours ago and her temp is already 99.5. Hope it doesn't get any higher. She says her arms feel like they're swollen but I'm assuming they're just uncomfortable? The arm that she got the td and pneumovax in is hot to the touch but isn't noticably swollen or anything. Hoping she wakes up in the morning and feels much better.
11-16-2013, 08:19 PM   #179
DanceMom
Senior Member
Well, her arm did end up swelling and is still very painful for her. I guess that is fairly typical. She's still running a 99.5 temp even with Tylenol. I'm beginning to wonder if the temp is from the vaccines or part of these periodic fevers she's been getting the last few weeks. Those never respond to Tylenol either.

Her dance teacher told me today that A doesn't look well and she can tell she's lost weight. Made me sad to know that others can notice. She's lost about 6 lbs. in the last 6 weeks. That's a lot to lose on a 47 in frame!

Meanwhile we're still waiting to hear back on our second opinion.....
11-16-2013, 08:37 PM   #180
Momto2girls
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I am so with you. Apparently my child isn't sick enough either and also has nonspecific inflammation. I think that's why I am so reluctant to scope her again. What if it is the same?! Hang in there .... I'm so sorry she has been miserable lately!
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