Crohn's Disease Forum » Parents of Kids with IBD » Sibling being evaluated


 
11-30-2014, 05:37 PM   #1
crohnsinct
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Sibling being evaluated

Hi all! I have waited a while to post this and am realizing now as I type it that posting makes it all seem a little too real and I rather like my bubble and having sand in my mouth.

You all know my 15 year old O was dx'd almost 3 years ago. She had very few and very mild symptoms until her first flare which landed her in the hospital, in ICU, fighting for her life. When the doc told me it was Crohns all I could think was, "not O! She is the healthy one" I would have figured her older or younger sister as GI issues were common with them.

So, now we are evaluating her younger sister and I thought posting our journey may help me down the road or others going through similar.

T, 11 years old has always had complaints of stomach aches. Ever since she could talk, "mommy my stomach hurts" She also has a learning disability so we put it down to stress and anxiety. Her sister was diagnosed and I mentioned her to the GI and ped but was told not to worry chances were slim.

She has precoscious puberty so has grown well above the norm. She also has Vitiligo (an auto immune disease).

Stomach aches persisted as did slight constipation and migraines. She also had this miscellaneous vomitting thing every so often.

In Januray, the pain was so severe she missed a trip to visit her Grandmother and cousins. I made an appointment with the ped who told me, "she doesn't have Crohns" I told him that just because my older daughter has it does not mean am assuming all my children have it but that being in so much pain is not normal and that something must be going on. He offered to run blood tests and I requested a fecal calprotectin.

Days later (and no stool sample produced), he called to say bloods were perfectly fine and that he cancelled the fc test. No celiac, no inflammation etc. I told him that bloods don't tell the whole story but I agreed to play nicely and assume "chronic constipation" and up the fiber and up the water.

Fast foward to October and well visit and she has been perfectly fine. No complaints. I tell him, with my tail between my legs, "guess you were right".

She left the room to give a urine sample and he tells me time for a GI consult. You could have knocked me over with a feather. Why now?! He said, "because she hasn't gained weight in a year" That's it! I assumed precoscious puberty and that she is already at her adult hieght (which btw is much shorter than my other girls) and that she wouldn't gain weight. Imagine if we all continued to gain!

GI says he has to see her and it is a technicality...he is not concerned what so ever. Let's run FC test to put this to rest.

First FC returns 1134. GI says, maybe NSAID use from treating headaches. She has honestly had only, maybe 3 tablets a month. Tested in two weeks and 688.

She has skipped 1 almost 2 periods.

The GI gave us the choice. Wait 2-3 more months and retest or just move to scopes.

Our daughter wants to move to scopes to "get this over with".

I know I can't view the two FC results as a drop, unless I was looking at a dx'd child under treatment, but I can't help but see them that way and wonder if we wait if they will drop further.

I know scoping while there is known inflammation gives us the best chance to see what is really going on. I also want to control the dx and not let the disease control the dx (like with her sister). If we can scope and dx before the first flare perhaps we could get ahead of this thing.

But she is sooo asymptomatic....yeah I know, I know...

Scopes are Jan. 2nd...a long time to wait.

So my exhaustive, mommy, Google research and experience, shows me that FC is VERY reliable for intestinal inflammation. Most of the time it is IBD or bacterial or parasite infection. The doc has ruled out infections. Some times it is colon cancer but that is extremely rare in kids. Divericular disease? With the constipation maybe but also very rare in kids. Proctitis? Doesn't really fit that mold but heck I'll bite. Maybe just maybe it was the NSAID use but NSAID use doesn't usually raise FC that high but maybe my kid is just hyper sensitive

So that's it for now. Sorry so long. I will post more in January.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
11-30-2014, 05:51 PM   #2
Momtotwo
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I would do the scopes. The risk is low, and you've had the concern for a while. My son's "constipation" was treated and he improved. It only delayed his Crohn's diagnosis. I regret that I didn't insist on scopes with the first GI visit. When was the last fecal calprotectin?
11-30-2014, 06:06 PM   #3
crohnsinct
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Thanks! I knew the committee would understand!

Her last sample was 11/12 and that was two weeks after the first with a definitive "no NSAID use". We got the results 11/24.

I know the two results are high but having the lower one second just makes me wonder....

Can FC results vary so widely and still have active inflammation or are things really calming down? If things are calming down, will we still get some definitive answers in Januray or am I back to sqaure one?

Wonder if I can have that "check intestines" light installed during scopes
11-30-2014, 06:28 PM   #4
Maya142
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Sorry to hear crohnsinct. Fwiw both my daughters have been on NSAIDs for years. M (who has IBD) has never had FC that high (highest has been 486). S (who does not have IBD) had a FC of 39 while on NSAIDs.

Hope scopes go smoothly
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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
11-30-2014, 06:48 PM   #5
crohnsinct
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Thanks Maya...in a weird way that does help. Helps me prepare a bit more and only confirms what I read.
11-30-2014, 07:16 PM   #6
my little penguin
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Hugs
We did scope Ds 's sibling with far less -normal bloods but no weight gain abdominal pain etc...
It was tough waiting for biopsies -so much so GI got them to us within less than 48 hours since Ds was being scoped two days later .
I can say knowing made the other kiddis gastroparesus dx much easier to get .

Good luck
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11-30-2014, 07:26 PM   #7
Pilgrim
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It would be wise to do the scopes, especially considering your daughter is willing to get it done with.

My daughter was treated for "constipation" for 6 months before scopes. I shudder to think what the lax did to her already bleeding colon for those months.

FC for her is at over 1800 right now, and she is totally asymptomatic. Labs are fabulous otherwise.

Actually, it would be kind of interesting if you would submit a fecal calpro the week of her scopes. Then you could see how the number correlated to her inflammation exactly.

That was suggested to us, but I declined. It was a logistics thing. I'm done travelling to the specialist until the snow melts but I may consider it in the spring.

Keep us posted. I hope it is nothing. It is enough to have one child with the disease.

BTW, when I say "asymptomatic" I mean great labs, ok energy (she doesn't keep up with the sibs, she's more for cuddling on the couch), bowel movements once every day or every other day, no visible blood. No tummy aches. EIM's are gone for now. If she wasn't diagnosed, I wouldn't be worried about her AT ALL. I'd just figure she was a little lazy, LOL.
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10mg oral Methotrexate, iron, zinc, Vitamin D.

Son - 20mg Methotrexate injections, 8 weeks EEN
11-30-2014, 07:28 PM   #8
crohnsinct
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Oh for sure MLP! If T didn't have a sister with IBD the ped probably would have just given us a lecture about eating more and the right foods etc. Just another thing to be thankful for I guess.
11-30-2014, 07:49 PM   #9
crohnsinct
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Thanks Pilgrim. I have actually been watching your thread with interest.

Especially since my older daughter also had no real concerning signs and then BAM in ICU and a total mess.

I also entertained the idea of requesting an FC a week or so before the scopes to see how they correlate but am afraid that they will come down again and scopes will be cancelled.

I also find it beyond bizarre that while my older daughter exhibited no symptoms until the first flare during treatment the doc takes normal blood results as gospel. He says, her inflammation shows in bloods. Ummm yeah when she was on deaths door and early in treatment but I always wondered what they would have shown months before the first flare and wonder about what fecal calprotectin test would have shown.

Doesn't matter now. O is being scoped on 1/16 (first time since dx but she is growing like a weed, energetic and gaining weight). Two weeks after her sister. They offered me same day as T but, our wise friend MLP advised against it.

While we certainly have enough bathrooms in the house it would be to hard having one come out of anesthesia and the other going under and processing both results etc.

LOL...I am two weeks after O...routine "you are getting to THAT age" stuff...RUDE! Better buy stock in Scotts!
11-30-2014, 08:28 PM   #10
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I hope you get some answers. I don't blame you for not wanting to do both on the same day.
11-30-2014, 08:44 PM   #11
my little penguin
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We had four days straight
Clean out kiddo #1 then next day scope
Day after clean out kiddo #2 then next day scope
I was never so tired in my life .
Glad you spaced it out .
11-30-2014, 09:14 PM   #12
Pilgrim
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Thanks Pilgrim. I have actually been watching your thread with interest.

Especially since my older daughter also had no real concerning signs and then BAM in ICU and a total mess.

I also entertained the idea of requesting an FC a week or so before the scopes to see how they correlate but am afraid that they will come down again and scopes will be cancelled.

I also find it beyond bizarre that while my older daughter exhibited no symptoms until the first flare during treatment the doc takes normal blood results as gospel. He says, her inflammation shows in bloods. Ummm yeah when she was on deaths door and early in treatment but I always wondered what they would have shown months before the first flare and wonder about what fecal calprotectin test would have shown.

Doesn't matter now. O is being scoped on 1/16 (first time since dx but she is growing like a weed, energetic and gaining weight). Two weeks after her sister. They offered me same day as T but, our wise friend MLP advised against it.

While we certainly have enough bathrooms in the house it would be to hard having one come out of anesthesia and the other going under and processing both results etc.

LOL...I am two weeks after O...routine "you are getting to THAT age" stuff...RUDE! Better buy stock in Scotts!
That is very frightening about her ending up in the ICU with no real symptoms. There is another mom on here who has a similar story with her son, Mehita, I think? I do pay close attention to both of your posts also, seeing the similarities.

You know, the calpro takes a few days to run as a test if I understand correctly, you could bring the sample with you (GI told us it was shelf stable for a week at least) on the day of the scopes. Then no scope cancellation.
11-30-2014, 09:27 PM   #13
Farmwife
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Sorry to this CIC.
Grace's FC has never correlated with her flares. Her New GI won't even use it for her.
Now my son has showed inflammation on his labs, unlike his sister.
I'm thinking about asking for FC next GI visit.
I hope you get answers soon.`
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I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
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dx Juvenile Arthritis
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dx Erthema Nodosum
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Bladder and Bowel Dysfunction
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Ehlers-Danlos Syndrome dx (1/26/17)
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11-30-2014, 09:37 PM   #14
Momtotwo
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I plan on running a calprotectin with my son's next colonoscopy, too.

Re. FC- we've all read the studies. It's supposed to be very specific for inflammation, but I haven't found much data to correlate number with amount of inflammation. Our current GIs don't use it to monitor response to treatment. Other doctors use it to track inflammation. I'm not sure what I think of it at this point. My son had two done (one before treatment and one about 3 1/2 months after treatment started.) The first stool was a bubbly, frothy, foul-smelling, unhealthy looking stool with mucus that made me suspect a pathogen. The second stool looked relatively normal but followed a few days of small quantity of visible mucus. The calprotectin levels were nearly identical. The first stool would have alarmed a GI. The second stool wouldn't. GIs ask a lot about stool appearance, stool frequency, mucus, etc. My son was symptomatic with the first stool and healthy with the second stool. GIs ask a lot about symptoms, too.

I just wonder what the future will bring with the calprotectin test. But if I had a high one on my non-IBD child, I would insist on an IBD work up.
12-01-2014, 04:49 AM   #15
Catherine
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Sorry you find yourself in this position.

We comming up to 3 years since dx in January. As you know Sarah is asymptomic most of the time.

On fc results my GI believes you can only get a false low not false high. If as the sample moves through it miss hitting a inflamed spot can get a false low, just as a biopsies can only show whether there is inflammation at the actual spot they are taken from.

Hopefully the testing will give you answers and treatment plan. You right no one should be in pain often.
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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)
12-01-2014, 08:31 AM   #16
crohnsinct
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You know, the calpro takes a few days to run as a test if I understand correctly, you could bring the sample with you (GI told us it was shelf stable for a week at least) on the day of the scopes. Then no scope cancellation.

Sneaky! I like the way you think! Ashamed I didn't think of that...must be slipping in my old age
12-01-2014, 08:47 AM   #17
crohnsinct
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Catherine, I have read that theory about Fecal Calprotectin as well. Also read a study on time of the day variability. I think their theory was first bm of the day will get a higher fc read or after a few days with no bm you might get a higher read. Nothing definitive came of it but they did find a high degree of variability.

Most of what I read also said, high is inflammation but low doesn't necessarily mean no inflammation. Could be because of whatever cut off value the doc is using, could be variability between samples etc.

I wonder how many times a high FC result ends in clean scopes. If that happens, I of course plan to request small bowel imaging but has that also ever resulted in nothing for a high FC patient? I know Maree has a son who had high FC but clean scopes but did they ever look at the small bowel?

Also wonder if there is any correlation to disease location and asymptomatic patients. For example, does small bowel disease produce asymptomatic patients more often than colonic?

FC numbers correlating to degree of inflammation? I know there are theories out there and have read it does but in my book it doesn't much matter. Inflammation is inflammation and even very mild ongoing inflammation causes plenty of damage. Unfortunately, we also all know to well, that low level can blossom into extreme at a moments notice.

Hmmm...maybe we should change the title of this thread to Asymptomatic and high fecal calprotectin...may help others searching for info.....
12-01-2014, 08:53 AM   #18
Momtotwo
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crohnsinct- I think it could matter (level and degree of inflammation). It could be used as a way to track inflammation decreasing or increasing, and it could indicate a need for med changes if the level correlated with inflammation. Interesting that you mentioned small bowel studies as I had this conversation with out GI lately. He doesn't used FC and he asked about that scenario-what to do with patient with clean scopes and a high FC. My answer was check the small bowel and he didn't see to agree. It seems like a requirement at that point, and I guess you would agree.

As always, we have more questions than answers.
12-01-2014, 08:53 AM   #19
my little penguin
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I know carolinalaska daughter had clean scope and clean mri but was full of ulcers on the pillcam .
Not sure what her fc was .
As far as constipation and FC .
Ds has had fc less than 15 but still has constipation.
Other times very miserable lots of symptoms
Inflammation in the duodendum and terminal ileum ( mild) but only an 86 on FC.
But his highest was only 234 after a flare with bleeding so ....
Who know for him.
I think it's like blood work sometimes it's a good indicator other times it doesn't work as well for people with a low reading .
12-01-2014, 09:03 AM   #20
Clash
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Glad you got the second FC, I would've went with the scopes as well but then we know that since my non IBD kid just had them a few months ago.

As far as fc, we keep using it for C since it seems a good indicator with him being asymptomatic. He has had one at scope time and it correlated with what scope and MRE(done at same time) showed.

Since his surgery my only question has been but was imaging correct at that time? Since before surgery he had scope and SBFT and the consensus was a bit of simmering inflammation yet the surgeon was shocked at the degraded appearance of the area removed. We unfortunately didn't do an fc close to that time but the scope before surgery and the one previous were comparable.

C's highest fc was 1700, the one we had at scope/MRE was 300.

Asymptomatic is just rotten especially when they are teens and fairly convinced of their invincibility anyway.

I'm hoping for good results!

And how about O, gaining and growing like a weed! Woohoo way to go O!
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Clash
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C age 19
dx March 2012 CD

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Dx May 2014: JSpA
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12-01-2014, 09:45 AM   #21
Pilgrim
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I hadn't really clicked how many parents have had asymptomatic kids. There are many.

CIC, I wondered about the disease location correlation, too, but in the opposite direction. H has only colon involvement. Everything else is clear so far. I thought maybe having ileal and small bowel disease would effect labs more but not sure about FC.

Our FC's were both 2nd day bm's. So if there is a difference there with then it could account for her off the chart readings.

There are about 3 polls that could ensue from this thread, anecdotal research on the forum....

Clash.... teenagers!

If his scope correlated with an FC of 300, what was going on with him when it was at 1700?
12-01-2014, 09:58 AM   #22
Clash
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C was extremely symptomatic at dx and flares for the first year came with symptoms, night fever, mouth ulcers, joint pain. The 1700 was sic months after dx and he had been on remi for as long. He was extremely symptomatic at the Times but I was tired of the GI nurse saying his labs looks great so I requested fc, it was then that we added MTX.
12-01-2014, 10:21 AM   #23
my little penguin
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Fwiw clash Ds had a sbft prior to dx it showed absolutely nothing - even radiologist stated whatever was wrong at least we knew it wasn't crohns since his TI wouldn't even show up at all . Three months later -CTE showed thickening of TI plus biopsy coir later as well .

I don't trust sbft at all
12-01-2014, 10:36 AM   #24
Clash
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Honestly though, his MRE was less than 3 months before that and it showed the same mild thickening so even if you threw out the SBFT, there was no testing done within that time frame that showed the severity, according to the surgeon.
12-01-2014, 10:51 AM   #25
Maya142
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I recently met a mother whose kiddo has JSpA and IBD and he has NEVER had a elevated FC and it was really luck that they decided to scope him and found ulcers and inflammation. Our GI says it's like bloodwork - for some kids a very accurate indicator of what's going on and for others, not so much.

M's has been very low at times even when she is having symptoms, so I wonder how good it is for her.
12-01-2014, 11:01 AM   #26
Momtotwo
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Clash- Did the GI see the area (the part that was eventually removed0 when the scope was done? Or, was it an area that couldn't be accessed by scopes?

My son had an ulcerated and inflamed terminal ileum on colonoscopy. His biospy indicated severely active ileitis. The MRE done 2 weeks later didn't show anything. The TI appeared normal.
12-01-2014, 11:31 AM   #27
Clash
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No not the worst area as it was beyond reach but only because the IC valve had inflammation.
12-01-2014, 12:24 PM   #28
Jmrogers4
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Asymptomatic kiddo here as well. We did FC one day, started prep the next and scopes on day 3. It was at a time of remission so all labs normal, scopes clean and FC at 90. Fast forward 6 months and FC is at 395, all bloods normal. MRE shows massive inflammation in small intestine, large intestine appeared normal. Again we did FC one day and MRE next - FC for that one was 495 I believe it was higher.
So if you do FC at same time as scopes and it shows inflammation but scopes look clean I would definitely push for pill cam or MRE so that bubble has a nice thick wall to climb in to.
Jack's GI is all about the FC for him and I don't think he was totally sold on it and may still not be for a majority of his kids but we know it is a pretty good indication for him when other things are not.
He pulled labs when Jack had MRSA because he wanted to see if it showed up on labs even though we did not have labs scheduled. He was still within normal range at the upper end but still in normal range so blood labs for whatever reason are not a good indication.
Hope the scopes provide answers for your younger daughter and O's are pristine.
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Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
12-01-2014, 02:10 PM   #29
Tesscorm
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Yep, another asymptomatic crohnie here... After dx and initial treatment, S had virtually no symptoms but MREs continued to show 20-30 cm of inflammation at TI area. Neither of his GIs (ped and adult) seem to put alot of faith into FCs?? At S's summer apptmt, I did ask about it again, GI's response was that it would cost me $200 and that he thought the money would be better spent going out for dinner! Now, I think his response is partly because S's blood results showed improvement since starting remi so there probably wasn't alot to be gained from an FC test at that point. At another apptmt, he told me he didn't find it to very reliable for small bowel inflammation. Again, as S's bloods do seem to indicate inflammation, I suppose there's limited value to having a test done that he considers questionable to begin with??? However, having said this, I'm not sure I completely agree with him re the value of having the test. S is having scopes done in March and am thinking of asking to have FC done at that time - comparing to scopes may be useful in determining if FC is an 'indicative' test for S and, assuming all is well, it may be of value as a baseline at some time in the future.

It is crazy how little consistency there is between results, symptoms, etc. Never allows you any peace because you're never quite sure if all is good. Most of the time, I happy and assuming all is well with S but, once in a while, I do think 'what if it's just not showing up in his labwork?' I do wish we had a simple 'back-up' like FC that could confirm all is well once or twice a year, or if there's ever a discrepancy between bloodwork and symptoms.

But, CIC, I do hope the results are unambiguous and put you in a position where you know what the next step needs to be!! While no one hopes for a dx, even worse is being left in limbo, knowing something's wrong but being unable to move ahead!
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Diagnosed May 2011

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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
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
12-01-2014, 02:15 PM   #30
Mehita
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Did you get a copy of or see the lab results yourself? I sometimes think doctors say "normal" for values just a tick outside of normal when for some kiddos, it really is a big deal.

I'd get the scopes done and sneak in an FC that day too if you can. When DS had a FC of 1332, he had major small intestinal inflammation going on. No symptoms at first, but then BOOM... hello diarrhea, nausea, cramps, vomiting. So if T presents like O, which isn't totally out of the question, then you've got your work cut out for you.

I'm (sort of) glad she's asymptomatic, but sorry you're having to work through this - again.
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