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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.
 
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?
 
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:rof:
 

Maya142

Moderator
Staff member
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:hug:
 

my little penguin

Moderator
Staff member
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
 
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.
 
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.
 
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!
 

my little penguin

Moderator
Staff member
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 .
 
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.:shifty:
 
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.`
 
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.
 

Catherine

Moderator
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.
 
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.:shifty:

Sneaky! I like the way you think! Ashamed I didn't think of that...must be slipping in my old age:ylol2:
 
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.....
 
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.
 

my little penguin

Moderator
Staff member
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 .
 
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!
 
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....:rof: teenagers!

If his scope correlated with an FC of 300, what was going on with him when it was at 1700?
 
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.
 

my little penguin

Moderator
Staff member
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
 
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.
 

Maya142

Moderator
Staff member
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.
 
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.
 

Jmrogers4

Moderator
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.
 

Tesscorm

Moderator
Staff member
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! :eek: 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. :ybatty:

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! :ymad:
 
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. :hug:
 

Tesscorm

Moderator
Staff member
No symptoms at first, but then BOOM...
Yes, I think that's the case with lots of asymptomatic kids... asymptomatic for only so long. :( In hindsight, S showed some very mild symptoms for a week or two in Dec but then nothing more. Then in mid-March, he started with diarrhea, fever, etc., etc., etc., and dx in May. But, I bet things were simmering for a long, long time.

If his backache was an indication??, that actually started way back in August/September. Still feel guilty that in his own words he said 'this isn't normal, it's not normal for someone my age to have a sore back for this long!' but we all (including doctor) kept saying it's from the injury, hockey, poor posture, etc.

Sorry, CIC, getting a bit off topic from T, but just one more point.. :) I think with all kids, especially those that are more asymptomatic, you really need to look for their 'unusual' symptoms. S's backache has gone away since he used EEN (which is why I do think it was related??), so whenever S has complained about a backache, I do go on alert... Also, given that S still plays hockey and often has some sort of injury, his CRP/ESR do rise often enough. I do think they reflect his intestinal inflammation but it's value as an intestinal indicator lessens when he has another injury... but, I've found that his HGB seems to be a really consistent indicator for him - whenever he's had a significant improvement (ie EEN and then remicade), his HGB fairly quickly begins to improve.
 
Thanks Tesscorm...other than the stomache aches that have seemed to stop since last February, I have been thinking about what other small signs might there be. O like S in hindsight did have some small signs but nothing that would raise any flags at the ped or otherwise until the big flare...slow swims, slower growth, low weight, spot of blood only twice and we all put that down to menstrual spotting.

So with T we do have body aches and pains but she is a softball catcher so we have easily explained those away and they are not all necessarily joints. Headaches occasionally but what pre teen doesn't get the occasional headacaches .

She has grown fine but we wonder if her other condition of precoscious puberty has masked the IBD as she hasn't grown to anywhere near my height or her sisters and the endo says she is probably done. But again explains the short stature as caused by precoscious puberty. But I still wonder.

HGB fine. O's was always on the low side of normal if not right under.

The recent skipped periods are the thing I am thinking are the big indicator with her She has had her period for over a year and has always been super regular so if she isn't absorbing due to inflammation then the reproductive system is the first to shut down.

I wish she were a runner/swimmer so I could see if there were fatigue issues but as a softball player hard to access.

You know when she was inpatient and not yet dx'd an oncologist paid us a visit. When I freaked she told me that cancer doesn't have to be as bad as I think. There are many types that have cures and they have a known treatment and it works for most and when you are cured you are cured. But that with IBD there are so many unknowns and variables and that as of today it is a lifelong thing that it could be equally as scary and difficult. Not sure that would make me pick up the cancer card in the pile but at least makes me understand how little they really do know and how individual the disease really is.

So yeah...clear as mud! No rhyme or reason to anything with this disease.

Guess the only thing we have gleaned so far is that high fc means inflammation and it must be found and we must find the reason. Let the hunt begin!
 
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.
I agree on the levels in a dx'd patient undergoing treatment. Especially if you have a third value so you can see a trend. But in an undx'd patient I think a variation such as T's doesn't necessarily mean inflammation is going down. Might be just more of what the stool grabbed that day..how many bm's there were...how recent etc...KWIM?

Weird your GI doesn't agree with us! Where did he/she get their degree from anyway? Probably some accredited med school and not Parents Of Kids U:rof:
 
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.
An FC of 90 and clean scopes? Hmmm. At his age Under 50 is normal. Yeah, I know in dx'd patients GI's tend to accept a higher number but I wonder if that was the start of the inflammation and if more frequent FC testing might have indicated a trend. Not saying anyone did anything wrong just wondering.

I don't know how much the test costs but it is so simple to get the sample...even easier than blood tests that if it turns out to be an accurate marker for my daughter I plan on asking for it frequently, especially with an asymptomatic kid.

Thanks for sharing your experience. It really does hep put the pièces together. Helps me formulate a plan to! Now to get the GI to agree to the plan:ylol2:

Here is the thingthat really has me puzzled...why did the GI say we could a) wait 2-3 months and retest or 2) scope now....why was he leaving that kind of a decision to me? Why would he be happy waiting 2-3 months with an fc of 688? Maybe he trusts Parents of Kids U? Maybe when I fought the addition of mtx years ago I gave him the impression I was ultra conservative and liked to take things slowly? Maybe I need a drink:drink:
 

Catherine

Moderator
"I know Maree has a son who had high FC but clean scopes but did they ever look at the small bowel?"

My sister son had clean scopes. He had testing of the small bowel but no MRE. His fc is now normal and all symptoms are now gone. His highest fc I believe was in the 600's. I know the GI was planning to scope again if the fc come up again. He look good when we saw him in August.

Her GI would have cancelled the scope if the fc returned normal.

For those who don't know Maree is my sister.
 

Jmrogers4

Moderator
I've wondered the same thing if we had the simmering inflammation although mild going on in small intestine at the time since we still had now growth/no appetite and we were still going on the assumption that things were good then as he was asymptomatic.

I'm thinking I should probably request one since we have had a good almost year of growth and no symptoms and a healthy appetite to see if it is lower than 90 and it has been a year since the last one. He goes in on the 23rd for infusion but is seeing another GI as his will be out of town so I may weight until the infusion after that and it will have been over a year on remicade. So at the time of scopes his ESR was a 7 it's held steady at 6 for at least 8-9 months now. Flares where symptoms show up it's at a 9.
 
What kind of testing did they do? I think his is the first case I have heard of where they found nothing but then again why would anyone who found nothing be hanging around here unless their child was still feeling poorly.

Gives me some hope:D
 
JM: I don't think that is an unreasonable request. I do wonder why my daughter's doc takes her bloods as gopel and she hasn't been scoped since dx but honestly she has gained 34 pounds, grown 8 inches, and started her period...I would say we are good there and I think your boy's progress is also a good indication. I Might still request an FC prior to O's scopes just to see if they correlate...never know what they might find and that info could be good to have.

Ya know...you mention lack of appetite. Come to think of it, T has never been a huge eater but over the past years she is getting worse and worse. DH also mentioned she seems to be retreating to her room a lot more. Just more pièces of the puzzle.
 
I think it also depends on the lab testing the FC when you are looking at some results. Labcorb had a NRR of less than 50 but Quest had a NRR of below 167. So 90, would be considered within normal range with one lab and a little higher than normal with the other.

The values they use are the same so it isn't a measurement value that makes it different.

Learned all this the hard way...ughh.
 

Jmrogers4

Moderator
Now home and looked at the FC test for 90 reading after your post clash, yes from Quest so below it says 169 is normal, still would be interesting to see number now with all the growth and weight gain.
CIC, Jack's GI says lack of appetite, feeling full quickly is common with small bowel involvement for what it's worth, maybe just a piece of the puzzle
 
Clash: That explains why the nurse kept saying Under 167 is normal but everything I have read said 50. I was wondering if she had O's correct age. Do you know why Quest uses a different number? I feel better using the 167 but if that is just what they "picked" then not so much. I know a lot of the studies state less false négatives at a lower cut off and seem to pick 50 as a good measurement.
 
It seems it is was explained to me as the average cutoff in that lab's cross section where the number resulted in something positive or I guess abnormal bit it has been awhile since I read up on it.
 
I've not visited here much in the last 18 months as Liam has been fairly healthy for most of this time. I mainly drop by when Catherine asks me to respond to a UAE question.

The GI said that you want to do diagnostic testing when there either really unwell or the calproc is elevated to increase the chance of finding something. If you test when they are having a good spell you can get false negatives and that just confuses things further.

We took Liam back to Australia for that Summer (Winter in Australia) and with the change of climate he put on a couple of kilograms and was a lot healthier. We had a change of school programs which reduced stress levels and I think was a big factor in reducing his reflux.

Then in January last year he broke his leg and had four months on crutches which also seemed to be a big help. At the end of that he was still thin but no longer painfully so.

He's now 34.5 kg (age 12 1/2) and he looks fantastic he has not had any stomach related issues, or any days off school due to illness this year.
 
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DustyKat

Super Moderator
:ghug:

I hope all goes well with T, cic, and you get solid answers, bless her. :heart:

At Matt’s GI appointment last Thursday I had a discussion with the doc about his views on FC and its role in the monitoring of disease status. His opinion, based on studies and his own observations, is that they are very reliable in large bowel disease and he uses FC regularly with those patients but not so much in small bowel disease. His team have been doing FC in conjunction with scopes for some time now and he is finding there is too much variability with small bowel disease for them to be used as an overall marker, he does however use them on patients with small disease where there has been consistent marry up with scopes. What he was alluding to here was he believes/hopes in the future that health will become more individualised when it comes to reference ranges and what they mean in the clinical setting.
For those with large bowel Crohn’s and UC he still believes that scopes should be done every 2 years regardless of disease status and normal FC due to the higher risk of colorectal cancer.

Reference ranges are different between labs as they determine their own values based on their populations. It is defined by what 95% of that normal populations test results fall within.

Dusty. xxx
 

my little penguin

Moderator
Staff member
Ds had fc of 87 when he was feeling bad but Gi was ok with this one.
Once he was feeling good last aug 2013- scopes were clean & fc was less than 15.
I think we need a repeat on fc soon it's been almost a year .
As far as non joint pain -achy places -this can be related to crohns under JSpA
-the areas were tendon attach muscles to bone become inflamed ( not visible to you ) and cause achy muscles -extremely common -
Most kids with JSpA do not have swollen joints per say or even back /hip pain
That is part of adult disease
Tends to start out in the heels knees shins
That moves around and is different from one day to the next
It also will disappear when the Ibd inflammation is under control for most people .
Some crazy kids are independant of Crohn's disease activity -like Ds and don't follow the lower peripherial rule either ( his arthritis not arthralgia is in his hands).

Hope the scopes get to the root of the problem
 
Hi Committee! :bigwave:

Just wanted to let you all know that T had her scopes today. Her colon was pristine (unlike her sister at dx). Her Terminal ileum was a mess (also unlike her sister) and her stomach had many Crohns sores (whatever they are and just like her sis). The doc dx'd Crohns and fully expects the biopsies to support the dx.

Next step is MRE on 1/20 to determine how much of the small bowel is affected and then we will discuss treatment.

So now we sit and wish away time so we can have more answers and get on with treatment. That is the thing I hate most about this disease. The wishing time away!

The doc was sweet. I could see the disappointment in his eyes and the defeat in his demeanor. He kept apologizing. Sitting in recovery the nurses from his office came down to see us and offer support. Nice to have a community like that but even nicer to have you guys:kiss:

My emotions swing wildly. Pissed that we found ourselves in that supposedly small percentage of siblings with disease, pissed it took so long for everyone to listen to me, glad someone finally listened even if he did originally ignore me, happy to have a dx and hopeful we can treat and get her feeling better.

It is weird. I feel lucky I have more knowledge this time around but then again I feel like I know too much and there is something to be said about being naïve! Also kinda feel like a first timer because disease location determines a lot of the course and O was mostly colonic and now T is TI and possibly small bowel...bizarre!

I despise having to write this to you all because I know there are so many siblings and asymptomatic ones out there. I held on to my hope right up to the very last minute...then the doc popped my bubble and yanked my head out of the sand.

Oh well!

Tee hee...not changing my sig to add T until biopsies are in...maybe a bit of my head is still in the sand and the bubble just has a slow leak :wink:
 
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Jmrogers4

Moderator
Oh goodness sorry to hear that. I remember that feeling after Jack's first scopes when doc said he was 99% certain it was crohn's but needed to wait for biopsies, amass thinking we'll at least we know what it is and we've dealt with it for many years (although it wasn't father/son and not siblings) we thought what worked for dad would surely work for son. Hubbies is primarily TI and imuran has been enough to keep him in remission and add you know not so much with Jack.
Hope biopsies come back quick and you can move forward and get her healthy
 
Lots and lots of hugs to you. I will keep your family in my thoughts. I do completely understand how you feel about wild emotions. We're just starting the journey with our supposed non-IBDer dd and I'm trying to brace myself for the worst but like you said at least I now have some experience.
 
Sending big hugs your way! I can imagine the myriad of feelings you are going through, like a tug of war with emotions. Hopefully, treatment will swiftly put the CD in its place!

I remember J's scope and thinking I'd rather know and face it with all her symptoms than be left in the dark but on that day in the room waiting I wanted nothing to do with knowing. Her results came back normal yet here we are several months later and still I see the symptoms in her that C doesn't show with his CD.

Another round of hugs!
 

Maya142

Moderator
Staff member
Sending hugs:ghug::ghug:
Both my girls have AS and I remember when my younger one was diagnosed her older sister was a huge help.

Hopefully T will respond as well to treatment as O has.:ghug:
 
Maya: yeah funny! I am sitting in my room and heard O say to T, "I just want to let you know I love you soooo much" ...I couldn't help but think...yeah until she borrows your boots!
 

my little penguin

Moderator
Staff member
Great big hugs .....
Sorry to hear about the dx.

Just glad someone finally listened .

Hoping you get biopsy/mre results asap so she can start treatment and you get can back to normal .
 

DustyKat

Super Moderator
Oh my goodness cic, I am so sorry to hear this! :(:(:( :ghug:

It was around this time 4 years ago that Matt was diagnosed and reading your post made me gasp. The memories of that time are still as raw today as they were then and I surely know what you are thinking and feeling hun. :hug: They say knowledge is power, hell I say it myself!, and there is no denying it but there is also a lot to be said for ignorance being bliss! :lol:

Now, ye of little faith, I’m sure O’s love for T will remain regardless of the borrowings! :lol: Seriously though, there is no greater truth in this world than to find yourself with more than one child inflicted with a disease such as this sucks beyond belief but I can honestly say that if there is one positive to come out of it it is they now have each other, a kindred spirit that truly understands what they are going through. It has certainly been the case with my two, they now have a bond so strong I doubt anything can break it!

Thinking of you hun and here for you anytime you need. :wub:

Dusty. xxx
 
Sending hugs and my support to you! One day at a time right now! You have a ton of support around you! We are all here for you!
 
I'm sorry to hear this.
I'm glad she got dx but hate that you have to go through it all again.
I'll be praying for all of you.

HUGS
 
Oh, that is so, so terrible.

I'm crying into my coffee for you and your girls. :(

I'm going to go away and think of something supportive to say, but for now I'm just sad that Crohn's came twice to your family.

Sending many hugs.:ghug:
 
Oh, CIC, so sorry to hear this... but glad you're getting answers. Hugs to you all! :ghug::ghug::ghug:
 
So here is at least one thing good that has come from all this.

When O was dx'd our GI asked if we would enroll her and her sisters in the G.E.M. study. They take stool, urine and blood samples from the healthy siblings and you answer an environmental questionnaire that is pages long.

Then it is just a yearly 5 -10 question call each year.

If a sibling is dx'd , they ask for new samples and you answer the long questionnaire again. They take the before and after specimens and compare them to see what if anything changed in the gut.

Pretty cool and maybe T will help with the puzzle!
 
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DustyKat

Super Moderator
That is cool cic! :thumleft:

Wish we had had that here :yfrown:, not only cool but how chuffed would I be looking and comparing more results! :lol:

Thinking of you guys. :heart:

Dusty. xxx
 
CIC, it is great that you did that. H has 6 siblings and GEM was a part of our plan, but we did not have a hospital close enough to manage the samples without a great and serious financial and time strain for the travel.

Anyway, thanks for doing that with your kids. It will help all of us one day.
 
Doc's office called today. They somehow got an MRE appointment freed up for next week. So MRE 1/14...gosh I like having a GI as impatient as me:ycool:
 
Well he booked an appointment for the following Tuesday so I guess he is hoping they report quickly also..but if I know this guy he will breathe down their necks waiting for it. City Folk:tongue:
 
Met with doc today.

Blood results came back normal...I know that doesn't surprise anyone here.

MRE report came back normal. That surprised even him. Surprised it didn't pick up what he saw at scopes or what the biopsies confirmed. But good there is nothing further. I must have looked excited because he said, "she still has Crohn's"

She started getting diarrhea last night and it continues today.

She has lost a pound. Complains daily of pain.

Doc asked her how she was doing and she said fine. He says all kids do this and he mine as well talk to the family dog! She got a lecture on being truthful and told it is o.k. to complain.

Given weight loss and start of D he figures disease is progressing as we speak so the real mild stuff is out. However, not ready to bomb it with Remicade just yet. That makes me feel better about his suggestion of Remicade at the start for O....he isn't a Remicade hog.

Starting with 20 mg injections of Mtx weekly. He said Mtx as mono therapy only 100% effective in 40-50% of cases.

Wanted to start steroid or EEN to take care of inflammation while we wait for Mtx to build up. She chose EEN. I am thinking EEN will help get us into that 50% success rate because it induces mucosal healing and the steroids don't.

We will be monitoring with my new favorite Fecal Calprotectin tests monthly. We will then move out to every 6 weeks and eventually land on every 8 weeks.

So that's it for now. Have at it committee!

P.S. we are saving the bowls, cups and plates for a later date:p
 

my little penguin

Moderator
Staff member
Sounds like a good plan
20 mg of Mtx is high most start at 10-15 mg and work up .
Our Gi was ultra conservative didn't want to budge past 10 mg.
Shots don't really hurt
Just watch for staining of counter tops /cloths etc.
Vial is only good for 28 days after you open it .
Ask pharmacy/ped office about sharps disposal
More and more places refuse to take them
Alcohol wipes come in jumbo packs at target /Walmart/rite aid etc...
Make sure they give you zofran /folic acid
Folic acid can be taken everyday to lessen side effects ( flu like symptoms for 48 hours after shot )
Ds takes 2 mg of folate -easier to absorb than folic acid .
Good luck
 

Maya142

Moderator
Staff member
We started at 2.5mg and worked our way up, but perhaps my daughter's rheumatologist was too cautious. M was on 25mg when she was around T's age (a bit older, 14) but had horrible side effects. My older daughter (at 16) was on 25mg and tolerated it well enough for quite a while. I would imagine both girls weigh more than T (they were around 85 and 95 lbs then)
M's GI also says 25mg is the dose they use, so I guess it just varies by practice.

Zofran really helped M.

Way to go T for choosing EEN! Is she drinking or using an NG tube?
 
Bawahaha..cups, bowls, plates!

That sounds like all good news to me! I think C also started low on mtx but his was with remi so more for synergistic effect and antibodies. He did move up to 20mg at one point maybe even 25mg.

C is an I'm fine kid too, thank goodness for fc tests otherwise normal blood work and I'm fine would rule his treatment plan!

Hope the EEN and mtx kicks CDs butt quickly!

Maybe the cups, bowls, plates were to go with a wonderful Italian meal and a fine wine...nah I can't cook!
 
I was surprised when he said 20mg MTX as O is only on 10 but then he reminded me it is mono therapy for T and with Remi for O. T weighs 100 pounds (precoscious puberty...she is big for her age).

I forgot to mention first blood test one week after first shot then call to see if o.k. to give second. Then every two weeks testing for awhile and build up to every 3 months...I think ( I had a Clash moment). Then add in the FC tests. Dang! Remi is looking more and more convenient everyday.

T will be drinking, just like her sister did.

The only thing that frustrates me is the disease not showing in blood or MRE. Hopefully FC continues to be a good indicator because if not all we had was scopes!
 
Oh yeah and he wants her to drink 2500 calories so 10 cans daily. Sounds like a lot to me but I figure he is trying to plump her up a bit to leave a cushion for some loss with flares etc.

She isn't the extreme athlete her sister is. Just softball 3 days a week and no offense but softball doesn't take what swimming and running take.
 

Maya142

Moderator
Staff member
We did the same weekly bloodwork, the every other week and eventually every 3 months.
We used 25mg of MTX with Humira, but that was because Humira wasn't working well by itself for both my daughters. I think 20mg is a reasonable dose, particularly if she's 100lbs.

If T has side effects with MTX, ask about Leucovorin. It's folinic acid and is used a a "rescue drug" for cancer patients (we use it in a much smaller dose). For some reason rheumatologists prescribe it more often than GI's. It really helped M's nausea and dizziness.
 

Maya142

Moderator
Staff member
M is supposed to have 2400 calories (900-1000 via NG tube) but she is supposed to be gaining weight. She's about 94lbs. Her nutritionist was surprised how many calories she needed to gain weight given that she isn't very active because of her arthritis. Perhaps it's just because of T's active Crohn's?
 
The "Plus Calories" Boost or Ensure is 355 per bottle so you could go with 7 bottles per day for her - way easier psychologically. 10 sounds like a lot.

You will need lots and lots of CUPS for all of that EEN.

It's great to have a plan. Hope it sticks for her. I'm sorry to hear that she is feeling worse right before your eyes.

Could you post her fecal cal results as you get them?
 
CUPS! Hahaha but seriously cups are bad...unless they have a lid. smelling the stuff makes drinking it harder:wink:

Sure I will post her results! We will make her poop famous! :D
 
Cups are bad, straws are great....but no straws on the list!!??? The mystery deepens.

Yes, there is a reason why we don't use our kid's names here too often. Not worried about predators, just future poop story blackmail.
 
All of you read the notes on that page, who's to say that straws weren't mentioned but my short hand was one of the other words or possibly that's what the arrow I drew under the word Humira stood for! LOL

It all sounds like a really good plan to me, I'd make sure the GI had vitamin deficiencies testing every 6 months or so since its small bowel disease.

I hope nothing but good times and great health going forward!
 

DustyKat

Super Moderator
Met with doc today.

Blood results came back normal...I know that doesn't surprise anyone here.

MRE report came back normal. That surprised even him. Surprised it didn't pick up what he saw at scopes or what the biopsies confirmed. But good there is nothing further. I must have looked excited because he said, "she still has Crohn's"

She started getting diarrhea last night and it continues today.

She has lost a pound. Complains daily of pain.

Doc asked her how she was doing and she said fine. He says all kids do this and he mine as well talk to the family dog! She got a lecture on being truthful and told it is o.k. to complain.

Given weight loss and start of D he figures disease is progressing as we speak so the real mild stuff is out. However, not ready to bomb it with Remicade just yet. That makes me feel better about his suggestion of Remicade at the start for O....he isn't a Remicade hog.

Starting with 20 mg injections of Mtx weekly. He said Mtx as mono therapy only 100% effective in 40-50% of cases.

Wanted to start steroid or EEN to take care of inflammation while we wait for Mtx to build up. She chose EEN. I am thinking EEN will help get us into that 50% success rate because it induces mucosal healing and the steroids don't.

We will be monitoring with my new favorite Fecal Calprotectin tests monthly. We will then move out to every 6 weeks and eventually land on every 8 weeks.

So that's it for now. Have at it committee!

P.S. we are saving the bowls, cups and plates for a later date:p
All sounds fab to me cic! :) and I so hope the plan works long and well! :ghug:

I don’t want to be a debbie downer, really I don’t! But re: the MRE…I don’t think technique can ever be ruled out as a reason for a scan not marrying up with other results, whether technique be the contrast and its uptake, the scanning itself or its interpretation. It’s just something I want you to store in the recesses of your mind and draw on should you ever need it and I will add emphatically here that I am no way suggesting that T’s MRE isn’t normal.

Where I am coming from is the experience we had with Sarah but bearing in mind that her scan was CT not and MRE. Would like to give a lengthier reply but have to get to work. *sigh* :lol:

Dusty. xxx
 

Tesscorm

Moderator
Staff member
yes, re vitamin/mineral testing... how is her hgb? It's a decent indicator (at least to confirm other results) for S. :ghug:
 
Dietician called today to go over EEN. She said that when T comes off they will use the FODMAP diet and that it is very close to the diet being used in Isreal that we are hearing so much about.

I am game and will try anything but really? An Italian without pasta, bread, onions, garlic and cheese? There are plenty other favorites on the no/no list but a lot on the o.k. list also. So maybe...plus after no food for 8 weeks she will just be glad to be eating. Might be the best way to introduce a new diet.

Will keep you all posted.
 
Is rice allowed? If so, try rice pasta. My son is gluten free but is allowed rice. He said he doesn't mind it at all. It can be a little gummy but you'll get the hang of it. Being a fellow Italian, I can't help much on the no onions or garlic or cheese for that matter!
 

Maya142

Moderator
Staff member
My daughter tried being gluten free for a while and actually really liked rice pasta. Also rice crackers (if rice is allowed that is).

What is T drinking? Peptamen or something like Boost or Ensure? Hope her first few days on EEN go smoothly!
 
well for awhile I thought she might be Celiac and we switched to Quinoa pasta. It is a good substitute also and believe it or not I use a spiral thingy...I think it is called the vegetti and feed a zucchini through and it makes zucchini spaghetti noodles.

But until they make quinoa ravioli or manicotti we will not be 100% satisfied!
 
If you make your own manicotti crepe style, Against All Grain author has a great wrap/crepe type recipe with (and forgive me if these are not allowed) eggs, almond milk, tapioca flour and I'm probably missing a few things. They would work pretty well for manicotti.
 

my little penguin

Moderator
Staff member
We did fodmap with Ds
Not hard and tons of fun things but not kid friendly
Eggy quiche thing with spinach /ham and something else
But the oatmeal bake was good
Can't try it now since he has such a hard time with so many veggies
 
When we did SCD we referenced low/high fodmap within the diet. But I didn't get into that part heavily. You'll have to educate us.

You come off as a foodie, CIC. If anyone can make it all palatable, I'm guessing it's gonna be you.
 
Thanks for the vote of confidence Pilgrim. The diet isn't 't that bad. It is just that some of our favorites are not included. But there is a lot on there that is so I am sure we can make it work. I have 8 weeks to prepare😁

Maya: she is drinking Boost and Ensure. Totally rocked the first day. Her only issue is the sloshy tummy, interruptions to her day and boredom. But all in all she thinks she can do it.
 
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