# Sibling being evaluated



## crohnsinct

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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## Momtotwo

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?


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## crohnsinct

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:


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## Maya142

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:


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## crohnsinct

Thanks Maya...in a weird way that does help.  Helps me prepare a bit more and only confirms what I read.


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## my little penguin

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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## Pilgrim

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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## crohnsinct

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.


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## crohnsinct

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!


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## MamaHenn

I hope you get some answers.  I don't blame you for not wanting to do both on the same day.


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## my little penguin

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 .


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## Pilgrim

crohnsinct said:


> 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:


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## Farmwife

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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## Momtotwo

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.


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## Catherine

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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## crohnsinct

Pilgrim said:


> 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:


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## crohnsinct

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.....


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## Momtotwo

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.


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## my little penguin

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 .


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## Clash

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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## Pilgrim

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?


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## Clash

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.


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## my little penguin

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


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## Clash

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.


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## Maya142

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.


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## Momtotwo

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.


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## Clash

No not the worst area as it was beyond reach but only because the IC valve had inflammation.


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## Jmrogers4

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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## Tesscorm

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. :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:


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## Mehita

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:


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## Tesscorm

> 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.


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## crohnsinct

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!


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## crohnsinct

Momtotwo said:


> 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:


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## crohnsinct

Jmrogers4 said:


> 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:


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## Catherine

"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.


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## Jmrogers4

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.


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## crohnsinct

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


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## crohnsinct

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.


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## Catherine

Page for Maree.

I will also facebook her.


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## Clash

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.


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## Jmrogers4

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


----------



## crohnsinct

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.


----------



## Clash

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.


----------



## Maree.

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.


----------



## Momtotwo

Maree - did you ever find a reason or suspect a reason for the elevated calprotectin?


----------



## Maree.

No we don't know.


----------



## DustyKat

: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

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


----------



## crohnsinct

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:


----------



## Jmrogers4

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


----------



## MamaHenn

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.


----------



## Clash

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!


----------



## Tesscorm

Just more hugs... :ghug: :ghug:


----------



## Maya142

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:


----------



## crohnsinct

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!


----------



## Maya142

...Or her sweater, or her makeup or even her heating pad :lol:!


----------



## crohnsinct

Heating pad :ylol2:


----------



## my little penguin

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 .


----------



## Sascot

So very sorry to hear that. Sending yet more hugs. Hope you get a plan soon!


----------



## DustyKat

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


----------



## Mj1gaynor

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!


----------



## upsetmom

Sending more hugs...:ghug:

I'm so sorry to hear this.


----------



## Farmwife

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


----------



## Catherine

So sorry!!!


----------



## Pilgrim

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:


----------



## Mehita

Oh, CIC, so sorry to hear this... but glad you're getting answers. Hugs to you all! :ghug::ghug::ghug:


----------



## crohnsinct

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!


----------



## DustyKat

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


----------



## Pilgrim

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.


----------



## kimmidwife

I was off for a few days and missed so much! So sorry to hear your news. Sending you a big hug!


----------



## crohnsinct

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:


----------



## my little penguin

Glad to hear it was moved up
Here's to a quick
Report. :drink::drink:


----------



## crohnsinct

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:


----------



## kimmidwife

Sometimes it is good to have an impatient doctor!!! Hope the MRE goes smoothly!


----------



## crohnsinct

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


----------



## my little penguin

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


----------



## my little penguin

Oh and you need bowls and slotted spoons for obvious reasons 
SAMPLES!!!


----------



## Maya142

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?


----------



## Clash

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!


----------



## crohnsinct

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!


----------



## crohnsinct

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

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

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?


----------



## crohnsinct

Good point Maya!  Didn't think of that.


----------



## Pilgrim

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?


----------



## crohnsinct

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!


----------



## Pilgrim

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.


----------



## Clash

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

crohnsinct said:


> 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


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


----------



## kimmidwife

Sounds like a good plan! Hope all goes smoothly!


----------



## Tesscorm

yes, re vitamin/mineral testing...  how is her hgb?  It's a decent indicator (at least to confirm other results) for S. :ghug:


----------



## crohnsinct

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.


----------



## MamaHenn

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!


----------



## Farmwife

I'm glad you have a plan. I'm sure T will be happy with anything after 8 weeks of no food.


----------



## Maya142

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!


----------



## crohnsinct

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!


----------



## MamaHenn

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

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


----------



## Pilgrim

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.


----------



## crohnsinct

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.


----------



## Catherine

Most FODMAP diets I have seen allow most cheeses as it is low in lactose.


----------



## crohnsinct

^^  YES!  I looked further and saw that...all is right with my world.  Only 2 tbsp. of ricotta though...that doesn't make many raviolis:ylol:

I am intrigued by this eating plan and will be researching it obsessively and maybe start a thread for our journey. Seems it is a good option for my diabetic also.  Not so much for O.  I will have to sneak her avocados on the side.


----------



## kimmidwife

Glad to hear the initial drinking went well. I will be looking for that new thread!


----------



## Maya142

:dance: way to go T! I'm so impressed by kids who drink their formula!


----------



## Clash

Awesome! I too am impressed by those who can drink the formula. I would rather wrestle an alligator that have to convince C to drink that much. At, least there would be an infinitesimal shot at winning against the alligator!


----------



## Maya142

:lol: Clash, me too! Can't blame her though, we both tried a sip of Neocate last week and it was nasty!


----------



## Sascot

Good luck for the EEN, hope she manages well. Hopefully it will work great.


----------



## Jmrogers4

Yes, cause that stuff is nasty.  I remember taking a sip and trying to convince Jack with a straight face that it wasn't that bad.  Although he didn't like it and will never be something he will willingly drink (only does it under doctors orders).


----------



## my little penguin

Neocate is horrid
Peptamenjr is bad but tolerable my tongue just revolted from the aftertaste
Boost kids is like dessert 
From what I tasted
Glad she is able to handle it


----------



## crohnsinct

Yeah…I remember you saying to give them the horrid ones first and then suddenly the Boost and Ensure doesn't taste that bad:ylol:  Tricks of the trade!


----------



## Tesscorm

Clash said:


> I would rather wrestle an alligator...!


:lol: not a comparison that would quickly come to mind for us northern folk!  :ylol::ylol:

I suppose we would poke at a polar bear!


----------



## CarolinAlaska

J drank okay for about 3 weeks until the ensure started having bad side effects.  Moving to Peptamen Jr was not working and so she had to go to NG tube, but has never managed to insert one without sedation.  I hope T's experience finishes without one.


----------



## crohnsinct

Hey girl!  Glad to have you back although I am seriously hoping it is just to say hi and not because things aren't going well.


----------



## my little penguin

Glad to see you stopped by to say hi !!!


----------



## crohnsinct

We had T's first follow up appointment today and the GI came in absolutely giddy with excitement.  The EEN worked!  At 4 weeks we pulled a Fecal Calprotectin test and she is at 51!  Totally and completely normal!  He said it is a hard therapy and it would suck if it didn't work but that he was over the moon that it has.  Granted she is also on Mtx but it is too early for the mtx to have had any affect.  

So the plan now is to reintro food and he said this is where science turns to art.  We are going to try a slow reintro of calories rather than specific foods.  So, we are going 20% of calories from food.  So 8 cans a day and 500 calories of food.  The food can be anything she wants as long as it

   - is NOT meat 
   - is not high fat dairy 
   - is not processed 
   - is not high in saturated fat 

So basically our normal diet anyway and 500 calories of that stuff is a lot of food. 

Each week or so we will add more calorie of food and reduce formula.  

When she is on 100% food, he will allow meat once a week and a treat here or there. 

The big news is the long term plan may be to drop mtx and cycle between EEN and food to manage the disease.  When on food stick with the ultra clean diet.  Monitor with frequent FC tests. 

This does however become a quality of life issue for T and while she wasn't adverse to doing this today, she may feel differently once she is on 100% food.  So we are not going to ask her for her decision until she has been 100% on food for a few weeks and we are sure the FC numbers haven't crept up.  

I do hate the ingredients in the formulas but I hate them less than I hate Mtx....for me it comes down to the lesser of two evils.  I understand it will be an incredibly mature decision to ask of an 11 year old and I will try not to sway her but I do hope she decides to give it a go.  

So all in all an excellent appointment and I am ridiculously proud of T for sticking with it and for agreeing to the diet going forward.  

P.S..he did say not an option for O.  He doesn't want to drop Remicade...too risky.


----------



## Pilgrim

What a dramatic decrease in Calprotectin! 

Keep us posted as to how the food reintroduction goes. Do you have a plan for what foods you are going to use? You said no emphasis on specific foods, but I am guessing you have a plan. 

It's great news! Hooray T !!!


----------



## crohnsinct

Haha Pilgrim..the system kicked me off.  See edit above.


----------



## Maya142

:dance::dance: So glad EEN worked!!
I'm amazed that T would even consider cycling between EEN and food. Way to go T!


----------



## Clash

Awesome news! I hope things just keep on improving! Way to go T!


----------



## my little penguin

Great news !


----------



## Farmwife

:dusty: great news!!!!


----------



## Mj1gaynor

Great news!  Good job T with your committment to give een a try!


----------



## Sascot

Such great news! Hope she can manage with the diet/EN


----------



## crohnsinct

Well she came home from school and tried to get her 500 calories in and couldn't believe how much food there was!  She was helping me make dinner, singing and cleaning.  She is sooooo happy!  

At dinner she said if the cycling thing could be 80/20 then full food or even 90/10 then full food she would do it.  I know in the book Beat Crohn's they say you could do it with those percentages, I am just not sure if our doc would go for it.  But you know me...I will ask!  

He mentioned two months on two months off...seems a bit extreme to me considering she got to 51 with only 4 weeks but I guess he is the one with the degree and experience. But I have google and a committee!  :ycool:


----------



## Maya142

At CHOP they do 90/10 I think. There are studies showing that it works almost as well, if not as well as EEN.
Glad she's enjoying her food


----------



## crohnsinct

Maya...is that their maintenance therapy or just what they use to induce remission.  Either way I think cycling 90/10 then food would work. 

Of course all this depends on her FC staying low while we introduce food.  But she is also on Mtx so if the FC stays low, we won't really know until we try.  If FC raises then it is completely off the table.  

Off to google....


----------



## Maya142

To induce remission I believe: http://www.ncbi.nlm.nih.gov/pubmed/23567777


----------



## my little penguin

Standard course is two months on and two off
Pilgrim tried it with her DD
Didn't work


----------



## kimmidwife

Awesome to hear!!!!


----------



## Jmrogers4

Hope it gives her the extra oomph needed for MTX to keep those numbers down.  Way to go T.


----------



## Tesscorm

Just curious, you said 'no meat'... why?


----------



## crohnsinct

They want us to stay as far away from saturated fat as possible.  I also think because if you take the meat away you have to replace it with something, right?  So more veggies, fruits, beans etc.  They quoted a study out of Japan that hasn't been published yet but promised to give me a copy.  Something about people maintaining remission longer the less saturated fat and meat products they had.  The threshold of acceptance was once a week.  I will let you all know more once I get my hands on that study. There is also a study coming out of Israel with similar findings but they didn't get much of the specifics of the diet yet.


----------



## kimmidwife

Crohnsinstinct,
You can google and see the Japanese study. I saw it a few months ago. Tried to convince my daughter. Unfortunately she is a carnivore like her Dad and doesn't want to give it up. Maybe I will try to convince her again when the second study comes out.


----------



## crohnsinct

Weird...I wonder why they told me it wasn't published.  Maybe I am confusing it with another...or maybe there was a second study.  Going to google it now.


----------



## lenny

My son is doing cycling, but the dr. has given us little guidance.  He said that my son could do 90/10 but it reality it is more like 80/20, as my son eats a little too much.  The nutritionist (who was admittedly clueless about cycling) said the my son didn't need to transition, but could jump directly from 90/10 Peptamen to 100% food all at once.  Abrupt changes aren't normally good for anyone's stomach, let alone someone with Crohn's.


----------



## my little penguin

http://www.naspghan.org/files/docum...nteral_Nutrition_for_the_Control_of.29[1].pdf

Pen is listed including Japan study


----------



## my little penguin

https://clinicaltrials.gov/ct2/show/NCT02201693

Clinical trials on it


----------



## DustyKat

This is so wonderful read cic! :ybiggrin: What a fabulous outcome and kudos to your lass, bless her. :heart: 

Long may it continue! 

Dusty. xxx


----------



## lenny

I really don't know how to read the studies.  My son has done about 5 weeks of EEN but with 10 to 20% food.  He's been feeling GOOD.  A lot better than when he was on MTX.  His only problem is that it hurts him to have a b.m. (sort of burns) which started a couple of months ago, but isn't getting any worse.  I've told the nurse (rarely get to speak to the dr.) several times, but she doesn't act concerned at all.  (Or even interested).  I plan to have my son do the EEN for another week and then go to 50% food for a month and see how that works.


----------



## crohnsinct

O.K. I got my grubby little hands on that "to be published" article.  It wasn't the Japan study but rather one that will be published in Gastroenterology soon.  Robert Baldassano is one of the authors. "Diet in the Pathogenesis and Treatment of IBD."  A few other familiar names but I mention Baldassano specifically because of a presentation MLP posted in another thread.     

The nutritionist and I talked more at the center's symposium on Saturday.  She really feels stongly that there is enough evidence these days to support us trying a 50/50 approach.  

T is on 80/20 right now and will stay there until her follow up fc test at 8 weeks after the last one.  If still low, we will add more food.  Then retest in 8 weeks then add more food and so on until we reach the 50/50 threshold.  At that point, we will decide if it is something T would like to continue and whether or not the GI feels we could trial the 50/50 with dropping mtx.  

I think some of the GI's reluctance has to do with compliancy with the diet portion (see restrictions above).  It seems, the success at 50/50 really has a lot to do with "what" you are eating.  If kids are not compliant with drugs you can only imagine how much lower compliancy rates might be with diet.  I am already seeing some of the struggle.  Both to avoid the "bad" foods and also to calculate and make adjustments in calories and food for lower EN intake etc.

So we will see in about 4 months which way we will go.  But honestly, I don't see the harm in trying as long as we continue to monitor as we can always add mtx back in.  I wouldn't pull O off Remicade to try this only because of the potential difficulty of going back on should it fail.  But maybe the diet we are on has something to do with her good results???


----------



## Sascot

Hope it keeps going well. I can understand why kids would find it hard to do long term but so worth it if they can


----------



## Clash

That is so awesome. I hope things continue to improve! C really didn't mind the supplemental EN and at its highest he was getting 2700 calories of formula plus food. Since our experience was for weight gain I have nothing to add about using as treatment option, other than CHOP had our IBD nutritionist all excited about it as treatment when C's group went to the symposium.


----------



## Pilgrim

I think it's a great thing to try. 

Yes, we did try cycling exclusive EN (6 week cycles) with 50% EN (no special diet for the food however most of our food is home cooked unprocessed). We also tried 6 weeks exclusive cycling into a 100% SCD. Both failed for our daughter. That said, we are using 50% supplemental EN with Humira. It helps the growth right now, and some studies suggest that it may make the biologic more effective (that was a Remi study but I'm extrapolating). I guess I have no way of being sure if it is the Humira or the supplemental EN that has her feeling so awesome right now, but looking at our past experience probably more the Humira.

I hope you are on to something good, CIC. What I've heard from doctors is that your diet can make you feel better or worse in general but doesn't affect the disease. So, if your doctor is suggesting it might control Crohn's (along with partial EN), then that is VERY exciting. 

I hope she is on the road to med free health! Wouldn't that be amazing?!


----------



## crohnsinct

Yeah, our nutritionist is pretty excited also and said they are all biting at the bit to find a candidate to try it with.  I guess T is a good one given she has relatively mild disease and responded so well to the exclusive period.  Plus I am a nutrition freak and they figure I will keep strict on the diet...they figure wrong.  Last night the beet loaf didn't get into the oven.  I got home from swimming at 9, starving and tired.  We had white flour pizza.  T had a slice...so 3 offenses...went over in her food calories, cheese, and white flour.  But they are giving us 8 weeks to see if we could do it.  So I will call last night part of the learning curve.


----------



## Tesscorm

I was going to mention the same study as Pilgrim...  that a Japanese study showed supplemental EN increased remicade's long term success.  I don't recall if there was any mention of diet but do remember the greatest success came when supplemental EN was at 1200 cal/day.  I also believe they found no difference in type of formula (ie elemental, semi, etc.).

S didn't have a problem with the supplemental EN he did for two years - luckily, he didn't find the ng tube to be a problem, so running the formula overnight didn't affect him during the day.  However, he didn't want to do it when he went to university and, with his GI saying it wasn't necessary, it was an impossible sell! :ymad:  But, he did agree to drink a couple of Boost shakes per day.  I do think they've helped...  whether they've helped his crohns directly, I don't know, however, I do believe all the supplemental EN has kept his body healthy and this has helped overall.


----------



## Pilgrim

So, no meat, no cheese. What about grains? Fluid milk? Eggs? Fish?

Sorry to be a pest CIC! 

Sounds like you'll have to find something delicious to cook ahead and keep in the freezer for reheat for the busy nights.


----------



## crohnsinct

Pilgrim:  Supplemental EN is a great thing.  The studies I have read say it can extend the amount of time your child stays in remission so stick with it!  Sadly, our doc told us we could drop it at some point and then O wanted nothing to do with it again.  Even says if she flares she wants the prednisone rather than EEN.  Hopefully we won't have to jump off that bridge. 

The studies on diet with EN to control disease are VERY encouraging.  The problem is, each person will need a highly individualized diet.  Much like there is no one med that works for all patients but diet will is even more variable. A lot of the research is being focused on identifying all the different types of disease and then will focus on some typical diets.  It will be a long time coming but I think in our kids' lifetime it will be here.  

So we are going to try the one that has had the best results in Isreal and Japan.  It is basically how we eat but when you use it as a treatment for a disease there is much less room for cheating.  So no cupcakes at birthday parties, or the pizza for that matter as it will most likely be made with white flour etc. I know plenty of parents with kids with severe food allergies are used to this lifestyle so probably just a learning curve for the two of us.


----------



## Pilgrim

Can you link or list the details of the diet? Our GI is talking about adding MTX to the Humira if her F. Cals are still high (we'll know next week) but I would love to try what you are trying there if we can get details. Maybe hold him off on adding another med to her little body for now.

I need specifics!!!


----------



## crohnsinct

Well, we did add the mtx to O's Remicade and I could swear I have read studies that say that increases the length of time the biologics work so there may be an argument for adding it.  

So basically it is the same diet we used with O.  An anti inflammatory plant based diet. He has mentioned if the mtx was just for her Crohns he would entertain dropping it and letting diet handle things with the Remicade but she takes it for psoriasis and psoriatic arthritis and the diet has done nothing to clear up the psoriasis. 

So for treatment of IBD just more strict than we are currently doing...so: 

no added sugar - fruit is o.k. 
no processed food - if it has a label don't eat it 
meat once a week - this includes fish, poultry and beef.  NO PORK. 
no refined flour - whole grain only 
limit high fat dairy - use cheese as a condiment 
no refined oils - use olive and coconut oil  
limit saturated fat - which if you do the above you will 

At this point she is allowed a cheat" food once a week.  She brought 16 pretzels to school and that was it for the week...well...until slacker mom served pizza last night. 

This way of eating won't hurt anyone so there is no harm in trying.  But like I said, diet is very individual so what worked for O may not work for T or anyone else.  We are basically an experiment at this point and still not dropping Mtx so really won't know until we get to that point if it is working.  

They are not huge fans of SCD with regard to treating inflammation.  Yes for symptoms though.  There was some talk of Fodmop but to many exclusions of food we eat regularly. Also mentioned, there may be some merit with gluten free but we aren't trying that yet.


----------



## Pilgrim

Thanks so much, that helps. 

Could you make something like a whole grain muffin and use honey for baking? Or no honey either?

I'm not a huge fan of SCD either after our experiment. But like you say, results can be very individual. I personally theorize that it is more effective in UC. We tried gluten free before diagnosis thinking that maybe Celiac was the problem. Didn't work for us at all, but I notice that she does prefer to keep the bread products to a minimum. So, we could do a low-gluten thing.

Looking at your list we could make changes with the meat (regular meats here) and cheese. I think cheese was literally her first word! And no pork specifically - that is interesting. I wonder whats the difference between pork and beef health wise. 

Thanks also for MTX perspective. I am really looking forward to your updates on the diet.


----------



## Farmwife

I'm pouting a bit so please keep that in mind with the next question.

Do docs know why the diet route doesn't work *for some *at inducing or keeping remission?
And when I say diet that includes EEN also.


----------



## crohnsinct

We do very, very little fluid milk.  We use Hemp milk or Almond milk. We make our own hemp milk.  I usually buy the almond milk and have only found one brand that is organic and does not contain carrageenan but it has a label so we are moving to making own in the Vitamix.  It is supposedly easy. 

Eggs are a go for now but down the road may be asked to experiment with including that in our once a week "meat".  Fish is part of the once a week "meat".  

Cheese!  I know!  We are cheese hounds here.  She said lower milk fat content cheese would be o.k....don't ask me, I haven't really dove into that yet. 

Prepare ahead?  Haha, you don't know me very well!  Good thing I gave up procrastination for Lent!  Thinking back to last night, I could have easily sautéed up some spinach and chopped onion and done an egg dish... I wasn't thinking.  I get like that when I am beyond starving and tired.  Better luck next time! 

Honey and baking...Well, they are not keen on adding sugar and yes while honey is clean it is added sugar.  BUT, you could bake a whole grain muffin with honey and call that your treat for the week.  But really, when you divide the honey content across 12 muffins how much is really in each?  Maybe one a day wouldn't hurt.  

I think the hypothesis here is the big offenders are the processed foods and the animal saturated fat.  Thus the reduction in cheese and meats.  The absolute limit on pork has more to do with the quality of the pork supply in the country and probably higher fat content.  Not really sure.  We aren't huge pork people (except for bacon which we have now only have at holiday breakfasts - we used to eat it every week) so I didn't ask.


----------



## crohnsinct

FW - Well since they really only have good research studies on EEN for now I can only talk about that.  No!  They have no idea why it works, how it works, or why it doesn't.  There are a lot of theories.  That is a lot of what this "to be published" study talks about. 

One theory...bowel rest.  Well then why doesn't a 100% juicing diet yield the same results?  And so on.... 

However, the fact that it does have a good success rate does point these researchers toward considering there is some sort of diet component.  What exactly that is and the different types will probably come years down the road. But there are also so many other factors...acronym G.E.M. (Genetics, Environment and Microbiome)  

So EEN has much lower success in UC so maybe disease location?  Type of formula could matter for some patients.  Exclusive or limited "other" foods allowed seems to affect some outcomes.  Adherence to the diet.  Length of time.


----------



## crohnsinct

Add to that the quoted success rate at inducing remission of 85% (pediatric)...but inflammation will return 100% of the time when food is added.  We have to figure out the exact balance that will work.  All while protecting the kids from the risk of increased inflammation. Balancing act.


----------



## Maya142

We have been to CHOP and they *LOVE* EN. They really push even supplemental EN. We didn't talk about cycling EN and doing that diet because there is no way that my stubborn teenager would even consider it, but they did say even supplemental EN makes a big difference. The doctor whose presentation MLP put up (Dr. Baldassano) is at CHOP.

M is still trying supplemental EN though has been diagnosed with gastroparesis which is making things difficult. That said, she has been doing it for months - and between that, Remicade and Imuran (a low dose) recent tests looked perfect!

If she only had IBD I would really push her to try cycling EN and diet but the arthritis complicates things.

Crohnsinct - there is a new medication for psoriasis - Otezla, not sure that would be an option for O. It's also been approved for psoriatic arthritis (but again, not sure it's approved for kids). There are also some people on this psoriatic arthritis and psoriasis forum who swear by diet for their psoriasis. The Inspire forum. Might be worth looking at.


----------



## crohnsinct

Thanks Maya.  Good point on the multiple dx's and diet and EEN.  Maybe that is another reason he wouldn't try it with O.  But the diet couldn't hurt from an anti inflammatory point of view but once they go to college I know all bets are off.  

Haven't heard of the new drug. Will definitely be asking about it. 

I have been on Inspire and other psoriasis forums and tried diet with O and it didn't work.  I think the problem for her is, it isn't natural psoriasis but rather drug induced (Remi).  So if the drug is the cause as long as she is taking it, we are stuck with psoriasis and psa.  EGH! 

Wanted to add for everyone that the we are considering diet and EEN for T  because she is already at her adult height and done growing and has mild disease.  So the risks are a little lower for her than say a child with severe disease who is still growing. Plus the med we would be withdrawing is Mtx and it is relatively easy to add it back in if we find the EEN/Diet approach doesn't work.


----------



## Maya142

> Study Links Common Food Additives to Crohn's Disease, Colitis
> WASHINGTON (Reuters) - Common additives in ice cream, margarine, packaged bread and many processed foods may promote the inflammatory bowel diseases ulcerative colitis and Crohn's disease as well as metabolic syndrome, scientists said on Wednesday.
> 
> The researchers focused on emulsifiers, chemicals added to many food products to improve texture and extend shelf life. In mouse experiments, they found emulsifiers can change the species composition of gut bacteria and induce intestinal inflammation.


Did you see that Crohnsinct? The full article is on Medscape.


----------



## crohnsinct

haha...Sort of.  Some one sent me a link to a newspaper that reported on it.  Nice to have the Medscape article though.  Thanks! 

Sadly, it doesn't surprise me.


----------



## lenny

The nutritionist said my son could go straight to 100% food from 90% Peptamen, but I pulled 50% out of my derriere because it seemed safer, which my son started today.  No special diet, but a healthy one with lots of fresh veggies, fruits, and scrambled eggs.  Everything organic.  He's so happy (today).

If he starts to feel bad at all, he will go right back to 100% Peptamen.

If all is going well, he will go back to 90% Peptamen on April 15th for another 30 days.

That's our plan.

He's been feeling so much better since he stopped the MTX.  I really hope this works!


----------



## CarolinAlaska

Great!


----------



## crohnsinct

Hi Committee!  

Got the word from the doc that after doing 4 weeks of 80/20 we can now move to 50/50 but we are also bringing her calories down to 2,000 because she has gained a bit of weight and was a fine weight to start with. 

I have to be honest, I don't think we have done a great job at keeping her at 500 calories.  The nutritionist and doc said that didn't matter as long as she was still drinking 8 cans which she was.  We also have not done a great job at keeping it clean...lots of distractions, trips etc.  Again, doc and nutritionist felt this was fine but really would like us to get back on track if we are going to try to pull her off mtx and try diet and EEN alone.  

So tomorrow we recommit! 

Next FC test is 4/16. So we will have more info then.  Next GI appointment is 6/2 so plenty of time before we have to make any decisions.  

Fingers crossed we could get back on track.  Glad she is on mtx as a safety net anyway.


----------



## Pilgrim

It's not easy keeping a clean diet with a busy schedule. 

We're thinking of you guys over here while you redouble efforts.


----------



## Sascot

Going out and trips are an issue for me as well, so limited for choices


----------



## Maya142

Good luck! Clean diets are so hard. My girls lasted maybe a week on it.


----------



## lenny

Son has hit a snag.  He had to poop 3 times yesterday (usually just goes once) and there was blood.

Went back on 100% Peptamen.

So, do we wait and see or jump on the Remicade train?

He's failed MTX, The SCD and Pentasa.


----------



## my little penguin

Have you notified the GI?


----------



## lenny

Not yet.  I know he will ask me what I want to do.


----------



## CarolinAlaska

From my experience, I'd jump on the Remicade train.  The sooner the better.


----------



## crohnsinct

IMHO I would also opt for some sort of meds.  Many, many times with EEN it only works while you are on it and once food is introduced it is just a matter of time before symptoms return plus it is simmering until visable symptoms and you don't want that.  

FWIW our GI is loathe to manage disease with diet and EEN and will only try it with T if we can keep to the diet I outlined earlier.  It is a hard and I would say especially for a teen boy getting ready to go off to school or a career soon.


----------



## lenny

We have no problem adhering any diet, but my son's GI did not advise us on diet, nor did the dietition.  We felt pretty alone and it was the best my son has felt since being diagnosed 2 years ago.  10 days of food and there was blood.

They told me his FCP was 159,  "normal" so question whether it's the disease or possibly c-diff.  I have little doubt, it's the disease.  And the first time he was in remission, his numbers never went over 50.


----------



## lenny

More bloody poops all day long and I wanted to take him to the ER at 4 a.m., but he wanted to sleep, so we will go when he wakes up.


----------



## crohnsinct

To recap: 

T has had 13 doses of Mtx.  Did 6 weeks of EEN with Mtx.  
FC came down to 51.  
Did 80/20 EEN and the special diet for 2 weeks 
Did 50/50 EEN and special diet for 6 weeks now 

3 1/2 weeks after moving to 50/50 we pulled another FC test (12 mtx doses) and I just found out it is slightly elevated.  

So if she has been on mtx and EN/diet combo and inflammation is still creping up it doesn't look likely that we will be able to manage the disease with EN/diet alone.  

She is asymptomatic.

Doc isn't ready to throw in the towel yet though.  He thought about going back to 80/20 but decided to stay the course with 50/50 and pull another test (still waiting to hear when that will be). Also requested we be extra vigilant  with the diet...I admitted to some slip ups. 

So at this point it is looking like she may just be one of those people who when they add back in food disease returns.  Just weird since she is on mtx also.  Maybe mtx isn't handling the disease...maybe this is all just one big blip and her next fc will come down.  

Sorry guys.  I feel like we let you down.  I know you were all hoping we could prove something with the diet/EN thing But I am not dropping diet.  It has made a huge impact on O and her disease status and who knows, if we weren't doing the special diet T might have been even worse.  

Cups, plates and bowls are still in reserve.


----------



## pdx

Good for you and T for being willing to try it.  It's not easy to follow a special diet, for kids or parents.  And I agree that she would probably be worse if you hadn't followed the diet.

Thanks for continuing to share your experiences--it's really helpful to all of us!


----------



## crohnsinct

FWIW - just found out FC is 256.


----------



## my little penguin

Hugs
I wouldn't be surprised if it went up even with the strict diet

12 weeks Mtx should be long enough for control even without the diet side.

Not saying it won't work but ....
256 fc is not exactly a number that need just a little boost KWIM 
Diet tends to be more if a boosting effect in general 

Good luck


----------



## Maya142

Sorry to hear about her FC. Hope things get better SOON!


----------



## crohnsinct

my little penguin said:


> Hugs
> 
> 12 weeks Mtx should be long enough for control even without the diet side.


Yeah...that's exactly how I feel.  

My last ditch bubble hoping thought is...FC results can vary pretty wildly and the next result will be right smack in the middle of normal.

Doc is so not concerned.  Has us pulling another test in 8 weeks.  You know that is killing me.  Not because I am worried but more because f we are going to have to make a change in treatment I want to get on with it!


----------



## Maya142

Would Remicade be next for her?  You need the at-home FC device they are developing


----------



## crohnsinct

I would break it from over use! 

I don't know what the next step would be.  Maybe a switch to Imuran?  But she has had uncontrolled disease for years now and being asymptomatic much of the time he may want to escalate to biologics.  Haha...our favorite game again...out guess the GI!


----------



## Tesscorm

Think you answered my question...  FC can vary greatly??  If yes, then let's all stay in our bubbles and go for 'just a blip' (at least, until the next test).

But, I'm sorry if it turns out to not be just a blip.  :ymad:

OMG, an at-home FC test! :yfaint:  Do you think we could get a group discount!?!?  :lol:  Like you, probably not a good diea for me...  I'd definitely overuse it! :ytongue:


----------



## Jmrogers4

At home FC test would become part of daily routine probably not a good idea for our house I would be testing everyone.


----------



## Tesscorm

:lol:  That's what I was thinking too...  even a sniffle would soon warrant an FC test! :rof:

(God forbid if a guest mentioned an upset tummy! :yfaint


----------



## kimmidwife

Tess, LOL! In our house too!
Crohnsinistinct, Caitlyn's last FC was 350 and the doctor didn't think that was to bad actually. Of course then two weeks later they did a scope and it was not good at all.


----------



## Catherine

200 is our cut point of where they make a change.  That could be diet in,this case.


----------



## CarolinAlaska

Not good at all.  Is that improved from previous?


----------



## crohnsinct

An increase, up from 51.


----------



## crohnsinct

Catherine said:


> 200 is our cut point of where they make a change.  That could be diet in,this case.


In all my study reading for our insurance appeal on the FC test I am reading 200 is the point at which they feel the kids are not responding to the meds and it is indicative that unless something changes they will head into a flare within the next year.  Luckily doc is pulling another test in a few weeks so hopefully things won't go too far off the rails.


----------



## kimmidwife

Sorry to hear.


----------



## crohnsinct

T had her regularly scheduled appointment with the GI today (haha I am redundant aren't I?).  

He says if her next FC test comes back at around the 256 she was at last time, we will not be changing anything.  A significant increase (not sure what defines significant) will warrant a change in therapy.  That change will be a move to the biologics  (likely Remicade) with keeping and decreasing Mtx.  She is at the max Mtx dosage for her size so keeping Mtx as monotherapy and increasing it is not an option.  

Managing her disease with diet and EN is out given the 80/20 caused the FC increase.  Bummer but who didn't see that coming.  

So we just wait for next FC but things are good here so we are not anxious.


----------



## Pilgrim

He's not worried about 256 for FC?

Is that the FC where "normal" is less than 50? If so, does that mean simmering inflammation at 256? 

How long between FC tests before you got the 256?


----------



## Mr chicken

Glad you have a plan and got good news to move forward

Our GI explained fc 
As 1000's is a full flare 
Above 300 they get concerned your slowly heading to a flare 
Below 300 they watch things closely and wait a bit to see if it's a blip 

DS had a 243 once about two months after a flare 
Gi said fc rises quickly but takes 3-6 months to get to normal again


----------



## Sascot

Good update, hope things keep going well


----------



## crohnsinct

Pilgrim,  Yes normal at 50.  It was 8 weeks since her last FC test and that was 51.  So the jump to 256 is significant to me but I guess I have to defer to his experience with these things.  Her next FC test will be 6/11 (8 weeks since the last) and we will see what happens.  I am not totally warm and fuzzy with letting her sit in the 250's but I do really like and trust our GI so I will play nice for a bit.


----------



## Pilgrim

Thanks for that CIC. It makes sense to me to see if there is an upward trend  that continues. I think you are really fortunate to get the regular FC testing.


----------



## crohnsinct

Oh!  We are getting it but insurance isn't paying for it:ack:


----------



## Pilgrim

Not nice! But, given the same opportunity I would do the same. Very valuable info.


----------



## crohnsinct

Update: 

T's latest FC result is 698.  Up from 256 in April and 51 in February (on EEN).  

Doc has given us two options.  Do a course of Entocort or try diet again.  I am not sure what he means by diet.  I wrote back to ask but assuming a number of weeks on EEN and then phase in the whole foods, no processed foods, low animal product diet.  

I am going to leave this up to her.  No shock what I want to try. 

Just wondering what the thinking is.  She has been on Mtx for 21 weeks.  Are they thinking Mtx just needs a little boost (similar to what we did with O and Remicade) or time?  Are they thinking this is a little flare of sorts that just needs to be handled and then business as usual?  Or is there a chance that Mtx just isn't going to work for her? 

Yeah I know, no one has the answer to my questions.  Crystal ball is in the shop.  

Guess they just want to try something before abandoning Mtx and/or escalating.  

Maybe just maybe if we do diet again and it works, we could revisit controlling this thing on the 50/50?  

She has been having some issues popping up but nothing I couldn't explain away with sports/end of school year/pre teen excuses...bummer!


----------



## Clash

Sorry I forgot, what dose of MTX is she own? Is it injection or oral?
So, she's been on mtx for 5 months? I would think that would be plently of time have they increased dose or anything yet?
WMybe the EEN gives it a boost and then strict diet helps. It has never been enough for us but this disease is so freakin' individual that you just never know!

Sending hugs and hoping it's just a small flare easily controlled quickly!


----------



## crohnsinct

She is on the max dose the doc is comfortable with for her size.  20 mg.  She recently switched to oral so I am thinking we will be switching back to injections as well.


----------



## Clash

I don't think we've ever noticed an advantage between injection and oral for C's CD but I think we definitely have for his joints pain. But you know how it is...So individual. Maybe since there is inflammation the change would be beneficial!


----------



## crohnsinct

Yeah, that's what I am thinking Clash...inflammation = switch to injection for absorption and to get it to work faster. She does have an issue with the shots in that the only place there is an amount of fat to grab is her stomach and the shots leave her sore and black and blue.  Wouldn't normally be an issue except she is a catcher on a softball team and the ball hits her right at the injection site.  

Nausea, fatigue, feeling like a truck hit her all ticked up a notch right around the same time as the switch to oral so was thinking it was the Mtx but with the increased FC result and now bad joint pain not sure what is caused by what anymore.   Gotta love this disease...everything clear as mud!


----------



## pdx

Sorry to hear the test results.  Have either of your kids used Entocort in the past?  E's been on it for 4 months now, and we haven't noticed any side effects from it--it's really different from Prednisone.  Of course, I'm also not sure how effective it's been for her, since she's on so many other treatments.  It is supposed to be good for inflammation in the terminal ileum, though.  Hope that whatever treatment you decide on works well.


----------



## Pilgrim

Just the researcher in me (if it's someone else's kid that is doing the work) but I would be awfully curious if a second round of EEN would pull that F. Cal down to where it was the first time she did it. Because there is anecdotal evidence that it doesn't work as well after the first round and I wonder if that is really a fact.

I can't imagine her wanting to do it again, but I don't know her.

Hugs your way. Sorry things are going downhill.  I hope it's a quick return to health for her.


----------



## crohnsinct

OMGosh Pilgrim!  That is almost verbatim what I said to my husband.  I said I almost want to do the EEN/diet thing again as a science experiment.  But yeah, my kid can't be an experiment can she? 

I just feel like this is more the Mtx not holding things and we are wasting our time with this interim step but maybe he knows he needs it in order for insurance to approve a move o Remicade.  

Just frustrated that the FC result left me with more questions than answers.  

PDX - no Entocort so far here.  O used Prednisone but for T it has always been Entocort suggested given the TI involvement.  I know Entocort has less systemic involvement but given the liver issues in our family and her use of Mtx and all I just don't know.  Also, would like to save steroids for a later date.  Just like EEN they work best the first time and successive times maybe not so much.


----------



## crohnsinct

G.I. says no need to go back to injections.  

So in bubble speak that means, "inflammation not that bad she can stay on oral". 

Nice how that works eh? 

Good thing it is summer...lots of sand for me to play with.


----------



## Mr chicken

IMO enough is enough
Numbers are tending the wrong way 
You have more than two points
Mtx has reached maximum effectiveness 8-12 weeks
So this is just a bandaid on a large gapping wound
It will help for a bit but wouldn't think it's a long term fix

Can you call the GI and ask to speak to him?
I would want to know exactly why there isn't a move to remicade 
Since she was just dx abd never got to the sweet spot for more than a few weeks which is not remission kwim


----------



## crohnsinct

Gotta love the chicken...calls em as she sees em.  I tend to agree chickie.  

I did write an email with my thoughts and questions unfortunately he only addressed the how many weeks of EEN one and ignored the rest:voodoo:

I am calling tomorrow and asking that we have a real conversation and if I have to drag up there for an appointment to do it so be it. 

I have been reading more on budesonide and it doesn't appear to be to terribly effective.  Plus many use it for a very long time...6 months or more.  I am all for a steroid but would rather a short prednisone burst with a taper than another 6 months of a drug only to find out my daughter needs to escalate to biologics anyway.  

Too many questions  to rely on a two liner from the nurse.  Need to have a conversation.


----------



## Mr chicken

Yep that was my research
Plus it's betting on inflammation in  only one spot
Crohns is sneaking 
Could be in small bowel but slowly festering so not showing thickening on mre yet .....
Glad your calling


----------



## pdx

Yeah, I have to say that budesonide was only added for my daughter to help tide her over (along with EEN) until the Remicade/MTX therapy could kick in.  I think you're right to ask about Remicade now.


----------



## Pilgrim

How many weeks of EEN?

I think the numbers look wrong, too. I would hope the laissez-faire attitude is part of a bigger plan on the part of the GI.


----------



## Maya142

M did very well on entocort, though she was on Remicade and MTX at the time, so it probably just gave her the boost she needed. Might be worth trying because if it works, it sure beats pred, even just in terms of side effects.
My daughter liked it better than prednisone even though it did nothing for her joints!

In terms of the MTX shot,have you asked the doctor for a smaller needle? My girls both got tiny tiny needles (so thin we were worried about them breaking) and that helped with bruising. Both my girls are really thin too.

Hope you can get T feeling bette soon.


----------



## crohnsinct

Pilgrim: 4-6 weeks.  

Gave her the news today and she said she knew the results were going to be bad based on how she was feeling.  She really wanted to go to Remicade also.  She isn't thrilled with EEN given some camps she is going to.  But also not thrilled with doing very long tern Entocort use. 

I will wait to talk with GI before any decisions. 

Maya: we had tiny needles at first and then pharmacy changed to mail order and then suddenly bigger.  I asked them about it but they swore they didn't change the size.


----------



## Tesscorm

Ugh, so tough to make these decisions with so many unknowns!  :ymad:

I think a real conversation with GI would help.  I would ask what he's hoping to see by going with EEN?  Does he really feel mtx just needs more time or a boost?  Why?, ie mtx should be therapeutic by now, what will another EEN or steroid course do this time that it didn't do before?


----------



## Maya142

I think we had 30 gauge needles...but I can check when we get home. If you do try injections again I would ask the GI or a nurse. Often they have tips and tricks to make things easier. M's rheumatologist was the one who prescribed smaller needles because she suddenly got nervous about injecting herself.


----------



## Sascot

Sorry to hear she is struggling. It does seem odd that the GI is happy to continue oral methotrexate when it's clearly not working. Hard choice between the EN and Entocort, it's a pity it isn't easier for these poor kids to deal with not eating for so long. Hope you get some solid answers from the GI and a good plan


----------



## crohnsinct

O.K. spoke with GI.  The issue is, it is the first 5 months.  She was mild at dx.  It would be hard to get insurance approval if we went to Remicade at this point.  If we go Remicade no turning back.  He really wants to go in knowing we tried everything we could first. 

So T wants Entocort.  She feels like she did EEN and the inflammation came back anyway.  So what would make us think the same thing will get different results?  I would add that subsequent uses of EEN are not always as effective and wonder if we tried EEN and inflammation returned would we then have to try steroids and would this just delay a change in therapy again? 

Doc has agreed to limit the Entocort to 6 weeks and then reassess.  This combined with the lessened systemic affect of Entocort got my buy in. 

So I bit the bullet and emailed the nurse today and T will start tonight.  Who knows...it just might work.  

Too early for wine right now so I will eat a sleeve of cookies! See you in 6weeks or so.


----------



## Sascot

Fingers crossed!


----------



## Mr chicken

Good luck


----------



## Clash

Good luck!


----------



## Farmwife

I hope it help! Hugs


----------



## Maya142

Good luck!! Hope T starts feeling better SOON!!


----------



## Pilgrim

I hope it is all she needs to give her a jump start. It makes sense. Good thing you asked. 

Hug button times spastic pressing.


----------



## CrohnsKidMom

I swear I'm living a parallel life, crohnsinct!  I hope this change in treatment works well for your daughter.  Good luck!


----------



## kimmidwife

Really hope this works for her! Fingers triple crossed!


----------



## CarolinAlaska

Sorry to hear she's doing poorly.  Praying that this helps.


----------



## MamaHenn

I hope the Entocort works. My son was on it for close to 5 months with zero side effects and it did help him.


----------



## crohnsinct

Hey mlp!  Not only did I not post an mtx paper I posted it to the wrong daughter!!!!  

So for all my mtx friends...guess no surprise t ended up on steroids already eh? 

http://www.ncbi.nlm.nih.gov/m/pubmed/24983976/


----------



## crohnsinct

So I never updated the FCP thread I had going about our appeal but it was denied.  I am moving to second level but fully expect it to be denied as well.  The doc filed a separate appeal.  That decision is due any day now.  

Here's the thing.  Clinical Labs charged me $118.  I moved over to Quest because they are faster and they charged me $240!  I am totally going to call Labcorp and see what they charge.  This is ridiculous.  Oh yeah and I did call Quest and ask for an adjustment given my insurance doesn't cover it and they said no way!


----------



## Clash

Ours with lab Corp used to be 240.00 but it seems like the last time it was 114.00 or 148.00. The only time ours has been covered is when he was in-hospital oddly enough.


----------



## crohnsinct

Hmmm  Frequent Pooper Program maybe?  

Yeah, the party line with most insurance is that they cover it as a diagnostic tool but as a monitoring tool once diagnosed it has no clinical significance. Interesting that it was covered in patient...maybe that got confused...run with it!  

So Labcorp also charges $240.  Looks like Clinical is the slowest but cheapest!  Since it looks like T will have this test every 8 weeks or so, think I will go with Clinical.


----------



## pdx

LOL.  We totally need to sign up for the frequent pooper program over here.


----------



## Maya142

:ylol2: We'd join that club too.


----------



## crohnsinct

Hey y'all.  So T completed her 6 weeks of Entocort about two weeks ago.  GI requested a fecal cal before tapering.  Result was 550.  A reduction of only 140points. 

GI is on vacation but he told nurse o.k. to taper down to 6 mg of Entocort and that we had stabilized  but there is still some inflammation.  He said he would review the information when he returns. 

Not quite sure what his thinking here is.  Pretty clear Mtx alone doesn't work, 6 weeks at full strength Entocort only stabilized things.  Seems a reduction won't help matters.  Maybe  he is thinking we are moving to biologics and Entocort doesn't help much so mine as well start to get off it...maybe he will add Prednisone while transitioning to biologic? 

She has had some symptoms, abdo pain, joint pain, nausea, fatigue, and some weight loss.  At this point we are 8 months out from dx and only a brief time of maybe 2-4 weeks of relief with a normal FC...Yeah I am getting antsy and yeah I know..first year is the hardest. 

I think he gets back next week so plenty of time to play our favorite game of outguess the GI!


----------



## pdx

Yeah, it seems like it's time to try something else.  Hope your GI is on the same page as you when he returns.


----------



## Sascot

Sorry to hear that. Hard not knowing what's the next step. Who said GI's are allowed holidays


----------



## crohnsinct

^:rof:LOL...Right?  I do not remember approving a vacation!


----------



## Farmwife

Instead of waiting for his opinion.... he should be waiting for yours.

I'm kind of interested what his logic is. I hope you here soon!


----------



## kimmidwife

Hoping you here back soon. It sure sounds like it might be time to move on to biologics.


----------



## DustyKat

It surely does sound like a move to biologics is fast becoming your girl’s only option cic. :ghug: 

*Sigh*...Oh to live in a perfect world where disease severity matched both the level of treatment required and it’s response to it! Hate it that disease is classified as mild but it doesn’t respond to the smaller guns.  

Thinking of you. :heart: 

Dusty. xxx


----------



## my little penguin

Second that ^^^^
Ds is another it's mild but it's not but its needs biologics but ....,
Hope you get answers Monday !!!


----------



## Jmrogers4

Same boat here, "well I guess he did need biologics" after his response and remission from biologics and maybe the 9" growth spurt


----------



## crohnsinct

I lost the game!  GI says either go back on EEN or continue with Entocort at 6mg for another two months and retest fcp (because it did help some).  

Haven't asked T what she prefers.  I am trying to figure out my preference first.  EEN heals her faster and will put back on the weight she lost but we are already on Entocort so mine as well continue. Plus little to no confidence Entocort will work so thinking we might move on faster if we stay on Entocort.  Thinking if we do EEN and she comes out normal then have to wait another 8 weeks for the trend back up and another 8 weeks to see if it goes higher and then maybe even another full on try of steroids.  UGH!


----------



## my little penguin

So wish it wasn't so....
"Stable" as in no bloody diarrhea or structure or abycess kids get no respect
If she only has simmering inflammation and constipation /mild weight loss
The docs don't see it as an emergency so figure they can ride it out with less risky things
Btdt 
Can you ask about the diet Ds is on?
It's suppose to induce remission ( not why he tried it ) and let's get eat albeit limited diet for 6 weeks then... Less limited diet after 12 weeks 

I know I would prefer biologics but ....
If you don't get anywhere 

Also try the Rheumo side of things


----------



## crohnsinct

Yeah...her most concerning symptom to me is stomach pain and she hasn't had that for a few weeks.  

Currently of most concern to me is her weight loss.  Down 5 pounds since 8/6. But like MLP says, guess that doesn't ring any alarms. She does also have various joints hurting at different times so will definitely get in to a rheumy on that one.  

I think we are going to stay the course with the steroids.  I want to give them the best chance to work and do a complete course.  I feel if we jump ship now we will always wonder what if we stayed on them.  

Just don't get the complacency with a 550 FCP and the thinking that reduced Entocort is going to help much...but doc has more experience so maybe....

She isn't in distress right now so I will play nicely but let things change and I will be on their door step in a NY minute! 

We have an appointment on 9/22 so I will pick his brains to get his thinking then.  At our last appointment when she was at 250 he did say if repeat came up like 2000 we would change treatment so guess in his eyes 550 isn't so bad.


----------



## kimmidwife

Sorry to hear. Sometimes it can be so frustrating when we know better then the doctors! 
LOL!
Really I think continuing with the steroids is a good idea but has he said what he is thinking in the long run? What is he thinking for maintenance medicine?


----------



## crohnsinct

Know better than the doctors:rof:

She is already on Mtx so I am guessing that is the plan...steroids to get her back down, treating this like a flare of sorts and then continue mtx to hold her there.  Problem is I don't see this as a flare considering she was only at a low fc with EEN.  I think it is more likely mtx can't hold her.  But giving him the benefit of the doubt perhaps we transitioned to food too quickly and these 4 months on steroids will get her to a better place and mtx will be able to take over from there.  Bahahahaha!


----------



## MamaHenn

I know unconventional but have you thought of adding LDN into the mix?


----------



## crohnsinct

Hmm. I asked him about ldn years ago for my older daughter and he was against it but it has been off my radar recently. Since he isn't changing therapy my guess is the answer would be no but I will keep it in mind should we change therapy. Thanks for the reminder


----------



## crohnsinct

So T had her check in with GI today. 

We are fighting to keep weight on her.  At one point she lost all the weight she has gained but she s back to where she was in June.  She hasn't grown at all.  She has had lots of joint issues, some stomach, some diarrhea, her period has stopped (again) and nausea.  However nothing very dramatic.  She hardly complains and only missed one day of school.  

He said he isn't happy at all.  He noticed circles under her eyes and that she was pale.  Glad to hear he is now on board!    

He said that there was no sense in pulling another FC or scoping because we know what both will tell us and he doubts anything has changed from diagnosis.   

He said he is loathe to put her on Remicade. Before you ask...I didn't ask why...guess with O on it I really didn't want to know why. However, he said we are in an acute situation and we have to manage the inflammation. Oh ya think? He went on to say that if she was more dramatic having 5-6 bloody bm's a day, losing lots of weight he would just jump to biologics but she isn't so either get better or worse!  I just don't get it!  So many other  kids put on biologics with much less symptoms...why the hesitation? Oh yeah...I don't want to know! Maybe it is jut the promise of this new drug that has him holding out.  

He asked her if she would do another 4-6 weeks of EEN. Shockingly she said sure. Then he said we could do 80/20 for a much longer time than we did last time with a very specific diet. He went on to say that he is just trying to get her inflammation down and keep her there until he can get her into a clinical trial. The two trials he is looking at for her are Entyvio peds and another oral drug that is not systemic at all...it only works in the gut. He expects those trials to happen in 2016 so he asked her if she could be patient and do EEN/food options until the trials happen or inflammation becomes too out of control that we have to escalate to biologics. There is also a possibility that we may hit on an EEN/food option that will work...you never know. 

So she will start EEN in about a week and a half...after her birthday.  She will be drinking again.  

I forgot to ask how we are going to wean Entocort and if she will continue Mtx. I will email the nurse later. Just licking my wounds right now.


----------



## crohnsinct

crohnsinct said:


> She will be drinking again.


Haha and so will I btw! 

So just so you all don't think I am crazy...yes I have a lot of questions....

There are risks with biologics but surely there are risks with the trial...sure not systemic but what if there is some crazy gut related risk? 

What if she is one of the kids to not get the drug? 

What if the drug has the same success as Mtx and only 40% respond and she is just a non responder?  Mtx was a success but not for her.  Entocort was a success but not for her.  

I know I really should have pushed him on the hesitation with biologics but with one kid already on them I really don't think I want to know.  I will ask at O's appointment in Oct.  

Also going to pursue a second opinion...just a matter of whether or not to go north or south.


----------



## pdx

I'm sorry that your daughter is still dealing with so many symptoms, and I think you're right to get a second opinion.  I'd hesitate to have my daughter join a clinical trial if I hadn't run out of the more tested options first, including Remicade and Humira.  

Your daughter is one tough kid, by the way!  That's so impressive that she hasn't complained much about her symptoms, and that she was willing to go back on EEN.


----------



## Maya142

Sending big hugs!! T is such a superstar for agreeing to more EEN!!


----------



## Pilgrim

Her symptoms don't sound good at all. Lots of kids with no frequent bloody BM's. I'd be freaking out over the slow down in growth.

You're there. Just empathizing.


----------



## my little penguin

:hug:
I hate non plans 
I would ask specifically for his reasoning for no biologics in her case.
He has his reasons but you need to know so you can make an informed decision.
Why are they ok if she is worse but not ok now even though she is still bad enough to need steroids and een which is basically double steroids btw when you think of it .
Plus didn't her numbers go up when she went from een to 80/20 last time which is why the mtx was added in the first place since she couldn't do diet alone 

Sorry she has to deal with this and you as well
I would have a ton of questions


----------



## Mehita

Is this the same doc that treats your other daughter?


----------



## Tesscorm

Totally understand not wanting the details on why not the remicade!   Bad enough to go through that turmoil once, but to have it put in front of you again...  ugh! :hug:

Also, very good questions re the trials.  I'm glad you'll have the opportunity to speak with him again soon.  It'll give you some time to mull over all your questions.

Whether or not she'll respond to the drug applies to any drug, trial or not.  She may not respond as well to remi as O did, T may need humira, etc.  But, whether or not she gets the drug at all is obviously very important!  If there's a chance she will not get the drug, ie I'm thinking perhaps there are some trials where all patients get the drug??, then I'd really want to know his justification for taking that risk!

Also you said '2016', when in 2016?  How long will she have to wait before he decides enough is enough.  Is he just going to put her on which trial begins first?  And how long do the trials run?  When would he be expecting to see improvement?  ie is there a long lead time to reach therapeutic levels as in imuran, etc.?

Sorry, just have more questions, not answers for you! :ghug:

(hmmm, you'd better get in to see him soon...  too late in October, you'll be way past mulling and will need a two-day retreat with him so you can get through all the questions you'll have by then!! :lol


----------



## Jmrogers4

Ugh, so many questions.  Just to throw it out there. You know how long we waited with Jack, which really looking back on,  yep pale, no growth but did he complain, nope. Doc said back then if he had bloody stool he would not hesitate to put him on biologic so instead we tried at his suggestion ldn while it didn't make things worse he wasn't really all that much better still no weight gain or height. So I would be for questioning what his reasons are,  one of my regrets is the time wasted trying ldn before going to remicade but then I'm sure I would feel differently had remicade not worked. Where's my damn crystal ball when I need it.


----------



## crohnsinct

Mehita:  yes, same doc


----------



## xmdmom

In terms of her height, could she be done growing? I haven't read every post but noticed she already had her periods.  A bone age would give you a good idea about how much statural growth is left.

I definitely would want to know why the doctor is so interested in the clinical trials.  Is the doctor involved in these trials?


----------



## crohnsinct

Yes!  She started getting her period at the end of her 9th year. That has been my debate all along. Even when we got the initial referral to go based on no weight gAin. "If she is done growing why would she keep gaining weight?  But I guess when she gained 6 pounds when she got to Fcp of 51 and then lost it they got antsy. I think a bone age X-ray would be interesting. 

Also agree on your question about the trials!  Trying to research that now.


----------



## Maya142

I looked up all the pediatric IBD trials on clinical trials.gov out of curiosity. I couldn't find ANY pediatric Entyvio trials.

I did find some very interesting EEN trials. There is one in France where they are trying cycling EEN as a maintenance treatment: https://clinicaltrials.gov/ct2/show/NCT02201693?term=pediatric+inflammatory+bowel+disease&rank=42 and there's also an SCD trial. Also a Simponi trial for pediatric UC but no Entyvio at all.


----------



## crohnsinct

JM:  Your story is exactly what we are going through!!!!  So scary to wonder what is ahead and a bit exhausting.  I just want to find what will work and move on already. 

XMDMom:  One of my regrets for not pushing for testing earlier is that I truly feel we missed her window for growth.  Both of her sisters are 5' 7" or more.  She clearly would have been taller if we got her diagnosed at 9 or 10.  Why oh why didn't anyone listen to me.  I am pretty sure a bone age scan will show she is done. 

Maya: Genius!  If we are talking clinical trials and using EEN long term until those other drugs either come to trial or are approved maybe we should also be talking about getting her into an EEN trial?!!! 

Feeling better today.  I actually thought he wasn't going to be phased by the goings on and say stick with the Entocort a little longer.  We know EEN works for her so at least we are doing "something" about the inflammation.  It is really the long term plan that is fuzzy right now but I do take comfort in the fact that we will be healing her.  Fingers in the ears for all of you who are about to tell me studies show not as effective second time around or after steroids etc!  

Heard from the nurse...continue Mtx indefinitely which imo is bogus...also continue at 6mg Entocort for first two weeks of EEN then I will get instructions on taper. 

See y'all in 5 or 6 weeks after we get her FC results.  I want them to be low but if they are not.......


----------



## Catherine

[/QUOTE]
  One of my regrets for not pushing for testing earlier is that I truly feel we missed her window for growth.  Both of her sisters are 5' 7" or more.  She clearly would have been taller if we got her diagnosed at 9 or 10.  Why oh why didn't anyone listen to me.  I am pretty sure a bone age scan will show she is done. 
.[/QUOTE]

I know that feeling.  I am sure we missing the growth window with my youngest.  We don't have a dx.  Only low ferritin/borderline anemia.  No other symptoms.   Maybe she was just meant to be smaller, that's what the doctors are telling me.


----------



## Tesscorm

Maybe a rudimentary way to judge height growth but I was once told by a doctor that I would have been approx. 3-4 inches taller had I not had juvenile osteoporosis.  He/she (can't remember, it was so long ago) was able to determine this by measuring my arm span.

So while I don't know how this corresponds during the growth phase, apparently, although my height stalled for a period, my arms kept growing (hence my ape-like appearance!  :ytongue

And, CIC, re the dr being part of a study.  This was a real concern to me when S started remicade.  S's GI strongly recommended remicade, had reasons why he didn't want to try anything else and, once we agreed, his office asked S if he'd participate in a remicade study (on which his GI was a researcher).  On top of the anxiety of starting remicade, this seemed to be a conflict to me and drove me a bit crazy.  But, now that time has passed, I really do believe his recommendation was the best for Stephen and there was no 'ulterior motive'.  In addition, I think it's because S is in the study, that we've had his remi levels tested three times and there was never any discussion of cost.  (My friend, whose daughter also has crohns, has had to pay for the prometheus test twice!)  So, I suppose conflicts may exist at times but, I would expect that it is very rare for a doctor to make treatment decisions based on his/her study affiliations.

Perhaps another question(s) would be what will be involved in the trials?  How will T be monitored, what tests, etc.  It may work to you/her benefit???  (But, don't misunderstand, whatever the 'benefits' are, they would never be worth it if there's any question that T's crohns will not be treated properly.)


----------



## crohnsinct

Ape like appearance:rof:  Our whole family has ridiculously long arms!  Great for swimming and softball!  Lousey when trying to find long sleeve shirts that fit! 

New slant to my thinking.  I think I found the drug.  It is sill in early phase of adult trials.  I really don't think they will get around to peds for a long while.  

T already tried EEN and diet approach with Mtx and inflammation returned with the introduction of food.  So why on earth do we think it will work this time?  So we play nice and do EEN/diet and inflammation returns.  No way will he want to wait for the ped trials.  He will be forced to then escalate. - OR- we do EEN/diet and really watch the diet portion this time and it works and her inflammation is controlled. - OR - trial gets fast tracked and EEN/diet doesn't work and we are asked if we want to participate in trial and we say no (ultimately the decision is ours) and he will have to escalate to biologics. 

In every scenario we win.  So I am not even going to fret about it one more minute.  Except to say that I do think it stinks that T has to jump through hoops again in order to play this stupid game.  

Hint to newbie EEN parents...if you are going to do EEN do NOT put off staring for a week or so.  IDK if it is because she really knows what it is like or not but the anticipation of starting is weighing on her a little.  She much preferred the rip the band aid off approach.  But she wants to enjoy her birthday more so is willing to deal with the impending doom feeling.


----------



## my little penguin

Second the don't wait to start een
This second go around Gi told Ds around 4:30 pm
He got to order his last meal on the way home ( still cried over it being his last meal )
And started the next day .
Granted this isn't possible if you child is doing elemental or semi elemental and you don't have supplies yet 
Ds has a large supply at home always since he never stopped supplemental nutrition 


Glad you found dime piece with it.
Honestly when we left the Gi office 5.5 months ago now and Ds was told to try een plus this new just published partial en with crohns exclusive diet - I thought it wouldn't work and wasn't too thrilled at any of it at all.
Still not thrilled with an extreme diet but it has dramatically changed Ds symptoms ( not taken them all away but functional again mostly )

So if een gets her to feel better 
Maybe you will find her sweet spot with either type or quantity of food .
The research I have read indicates both are a factor and free diets don't work as well in combo with partial en


----------



## kimmidwife

Crohnsinstinct,
I really think you should get another opinion. I just can't understand why he doesn't want to put her on remicade if your other daughter is doing well on it. I can't understand why he would want her to wait for clinical trials like the others said.
Fingers crossed the EEN works for her. Keep us posted if you decide on the second opinion.


----------



## kimmidwife

Ps. Wanted to update, daughters number two and three are both going to the GI in two weeks. Daughter number two has had a bunch of tests done (stool and blood)which have all been negative so far but continues to have bad stomach aches and diarrhea. Daughter number three has had blood in her stools on and off for years. She saw a GI doc several years back who just did a few blood tests and a fecal call, which at that time were negative. For a while things seemed better with her but then over the summer she started complaining of stomach aches again and started having blood again. Never a dull moment!
Oh and daughter number two is also being worked up for a possible bleeding disorder called Von Willebrand's Disease. It is the most common bleeding disorder there is. We saw a really nice hematologist who managed to get blood from her without chasing her around the room. (She is my one who freaks out over blood work). We are awaiting those results. They said they take about two weeks.


----------



## crohnsinct

Gee Kim!  can you juggle one more thing?  Good luck with the follow up.  Good for you for pushing the GI for answers.  May not be IBD but it must be something.  Constant pain like that isn't normal.


----------



## Clash

I hope the EEN gets her fc numbers down! I would be hard pressed to convince C of 80/20 EN with other med options out there. So I'm glad T was agreeable and I hope things improve for her greatly! Hugs!


----------



## CarolinAlaska

Sounds crazy, Kim.  I hope they both find answers and good treatment soon.


----------



## kimmidwife

Me too Carolin, daughter number two seems to be getting worse. I really hope we can figure out what is going on with her stomach. On the one hand I want the tests to continue to be negative for her but on the other hand answers would be nice.


----------



## crohnsinct

I normally wouldn't post with this little goings on but with all the bizzarro things on the forum lately I thought this was too hysterical not to share.  

As of Sunday, T has completed 2 weeks on EEN.  She has been on 6mg Budesonide (taper from the 9) since end of August.  Our instructions were to keep MTX as is and call for instructions on Budesonide taper after two weeks. 

Well nurse was out Monday and Tuesday.  We are waiting test results on O so I figured when she sent those to me, I would ask her.  

Well, I got an email re: T!  I wasn't expecting one.  In it she says the doc is calling in a refill and is reducing her mtx dose to 15mg!  No mention of Budesonide.  But here's the thing...full strength Budesonide and 20mg of Mtx didn't hold her.  We added EEN and tapering steroids so what the heck lets reduce MTX also and see what happens!  

Good luck trying to guess his rationale here guys! 

Oh and then nurse asked me T's current dose...ummm shouldn't you have that?  Oh no e don't because when they cut over to electronic records 10/1, they decided not to input old info....makes totally sense :rof:

P.S.  guess #1 is in...perhaps they got O's fc result and it was normal but mistakingly read it as T's?


----------



## Maya142

My (very optimistic guess): He is lowering her MTX dose because she won't need as much when he puts her on Remicade .

Sending hugs :ghug:!


----------



## crohnsinct

lol. I like it maya!  

I have another...don't clinical trials sometimes have a no xyz med within so much time requirement.  Maybe he is trying to get her down so she could be accepted in the trial we can't find on the .gov site and that we aren't even sure we want her on!


----------



## pdx

You're right--that is strange!  Or at least it's very strange that he would do that without even talking to you about his reasons.  I like Maya's explanation too!


----------



## kimmidwife

That does sound really odd! Maybe they did mix up the results? Don't you love how much more accurate electronic records are (not)!


----------



## Pilgrim

Did you ever get it all sorted out?


----------



## crohnsinct

The only thing I know at this point is they didn't mix up the results because her sisters results were not even in yet.  

Oh and we are also decreasing Budesonide down to 3mg's.  

O had appointment with him on Tuesday...I have a list of questions as long as my arm!


----------



## crohnsinct

Had o's appointment. Asked why the reduction in t's mtx. He said because 20 is the max and she has been on that dose long enough. 

She is finishing up her 4th week of exclusive enteral nutrition so we pulled an fc today. Gi says if elevated again we will have to consider a change in therapy...Ya think?  

No entyvio. Not proving effective in crohns. Great for UC and maybe colonic involvement only but not for t.i. 

That clinical trial is too far out. 

Let's hope fc comes down and we don't have to escalate. 

That sounds like a plan to me....hope!  Why didn't I think if that? 

Oh yeah and I asked him why do scared if remicade. He said nothing I don't already know. Just hates to escalate mild kids to biologic


----------



## CarolinAlaska

I wonder if these docs have any idea of how crazy they make us?  How is T doing with EEN?  Does she have a full-time NG tube in?


----------



## Pilgrim

Mild kid here escalated to biologics. I   an understand the reluctance to escalate. But then it's hard not to wonder if you would buy time later on for them by utilizing top down approach.
I wish we all knew if biologics are changing the stats re time to surgery from dx.
While my little one had some great fc drops with humira, she also had a fabulous drop with een. 
Hope you see the same.


----------



## crohnsinct

Pilgrim said:


> I wish we all knew if biologics are changing the stats re time to surgery from dx.
> While my little one had some great fc drops with humira, she also had a fabulous drop with een.
> Hope you see the same.


We do have stats!  Risk if surgery without biologic. 75%. Risk of surgery with biologic 35-40%

Een worked the first time for t. Problem is keeping her there. Plus some say een is t as effective second time around or after steroid use.


----------



## crohnsinct

Pilgrim:  you can cuddle up with this at night when the biologic risks start to scare you 

http://www.ncbi.nlm.nih.gov/pubmed/26271358?dopt=Abstract

Keep in mind the figures I quoted in my last post were for over a lifetime and quoted by our doc.  I have also seen them quoted in presentations, twitter feeds etc.  

I am very hopeful a lot of our kids will be able to avoid surgery.


----------



## Pilgrim

crohnsinct said:


> Pilgrim:  you can cuddle up with this at night when the biologic risks start to scare you
> 
> http://www.ncbi.nlm.nih.gov/pubmed/26271358?dopt=Abstract
> Keep in mind the figures I quoted in my last post were for over a lifetime and quoted by our doc.  I have also seen them quoted in presentations, twitter feeds etc.
> 
> I am very hopeful a lot of our kids will be able to avoid surgery.[/QUOTE
> 
> I have only seen the Stat 75% within the first 5 years of diagnosis. Your info is encouraging. Looking forward to the reading.
> 
> So, does that make you think about a second opinion re treatment?


----------



## Farmwife

Ha ha, she beat me to the question. Will you be getting a second opinion?

My thinking is that even if Grace had to have a surgery down the road, how many surgeries did she avoid by doing biologics right away. That's a thought that makes it easy to stay on Remicade!


----------



## Jmrogers4

But is it mild?  Take my stubborn child for example.  It certainly appeared mild, but the "milder" medicine wasn't taking care of that simmering inflammation.  I think it still baffles the GI that he needed to move to biologics and he says nearly every time he sees him (especially with all the growth)  I guess we made the right decision moving to Remicade because clearly looking at him now he needed it.
I guess at what point do you decide that it's been long enough and they need something more?


----------



## my little penguin

Another "mild" case on biologics here as well
Got the same " his body really does well on biologics "

I think they need a new system to rate kids


----------



## Clash

Meh you all know I'm pro top down for kiddos but my kid was stated as severe at dx so there was never a need to question it. 

Even now after surgery it is taking humira and mtx to tackle inflammation only seen at the cellular level. Who knows if it's working because C doesn't cooperate in the "showing symptoms" or blood work category!

You have her on EEN so if the next fc is high that's as good a time as any to flip the script!

Hoping all results are good and no script flipping is required!


----------



## Maya142

Mild here too - did great on biologics. Colon looked absolutely "beautiful" after 8 months on Remicade + MTX. Biopsies were clear in the colon (TI showed mild inflammation but MUCH better than the first scope).

Well, you know what I think -- I definitely vote second opinion too - this is getting ridiculous! Sending hugs :ghug:


----------



## kimmidwife

Not mild here. But I also have to disagree with your doc about entyvio. Our doc just came back from a conference in Washington DC he said the studies are showing entyvio works for crohns but it takes a much longer time then for UC.6mos to a year vs two to four months. He also said they are seeing better results when it is given with methotrexate for the first six months but continuing the methotrexate after six months did not show added benefit. (Kudos to myself for suggesting to our doctor that we fired in April that we should use methotrexate as a bridge u till the entyvio kicked in. I guess I was ahead of the literature, ). Anyway just some info to share so you know that entyvio could still be an opting for the future.


----------



## my little penguin

Kim
Entivyo studies are very clear in how they word them
It induces remission in UC
But they will not use the words "induces remission " in CD.

That said something work better for others that technically aren't suppose to work for CD.
Probiotics is a prime example for are proven to work for only UC not CD
But they work well for DS 


CIC I agree with the others 
Your kids deserve to feel good
Hope you get a second opinion soon


----------



## my little penguin

> Conclusions
> Vedolizumab was not more effective than placebo in inducing clinical remission at week 6 among patients with CD in whom previous treatment with TNF antagonists had failed. The therapeutic benefits of vedolizumab in these patients were detectable at week 10. ClinicalTrials.gov number: NCT01224171.



From
http://www.sciencedirect.com/science/article/pii/S0016508514006568


----------



## Maya142

Our GI also uses Entyvio but only as a last resort right now. She says that for Crohn's the anti-TNFs are much more effective. I'm curious to see how meds will change in the next few years - Stelara is supposed to be approved for Crohn's in the next year.


----------



## crohnsinct

Oh man Maya!  If Stelara gets approved that is my go to drug for O!  It has amazing success with psoriasis...I dream of the day I can attack both issues with one drug! 

Kimmidwife:  my nephew has all colonic Crohn's.  They were actually for a time thinking of changing his dx to UC.  He failed Remicade.  For some reason didn't move to Humira.  Started Entyvio about year ago and is still not in solid remission.  It's a shame because he seemed like the perfect candidate.  For a time he was asking to have his colon removed because he was suffering so terribly.  I am praying he could hold on long enough for some of the newer meds to enter the market.  His disease almost exactly mirrors O's but he didn't respond to Remi.  Go figure.  

Believe me...you guys are preaching to the choir here!  I do hate that mild disease will need biologics but heck if that is what it needs then let's give it!  

JM:  your story sounds eerily similar to T's and actually now O's.  

Fc went in yesterday so I should have some indication of whether or not EEN worked within 2 weeks.  Fingers crossed bt not sure what I am crossing for.  FC down then move to slow reintro and wait to see what the next FC brings.  Still elevated then change therapy.


----------



## my little penguin

Second opinion started in the mean time ???!


----------



## Maya142

Phase III trials look good for Stelara with Crohn's (incidentally the dose they used for Crohn's was MUCH higher than the dose for psoriatic arthritis). But even if it's approved - it'll be approved for adults with Crohn's -- might take another year or so before pediatric GI's start using it.

This is the Stelara study in case anyone is interested: http://www.medscape.com/viewarticle/852848


----------



## crohnsinct

Pulled T's FC at 3 1/2 weeks (she has now completed 5 weeks) and the result came in today....27.1!  

I know the GI is going to positively thrilled with this result.  

Guessing we move now to the slow reintro of food on the IBD-AID diet (6 shakes and 400 calories of food) and pull an FC in a number of weeks and see what happens.  We have been down this road before so I am cautiously optimistic.


----------



## pdx

Wow--that's great!  How's your daughter feeling?


----------



## crohnsinct

GI wise - fine 

Lots of aches and pains that we are going to see GI about because he has some concern that it might be sacroiliitis.  That appointment is next Tuesday.


----------



## my little penguin

Glad the number went down
But if she has sacroilitis or JSpA that can't be fixed by Diet
So she still may need biologics

Let us know what the appt brings 

Good luck


----------



## CarolinAlaska

Sounds like good news.  Onward and upward!  Good work, T!


----------



## Pilgrim

Wow! Happy for you re Fc. How long from diagnosis with Crohn's did the joint pain emerge for T?


----------



## crohnsinct

Hard to say...seems like she has always complained of something or another bothering her but the real tough stuff was over the summer and the lower back/hip recently...so 6 months out for the tough stuff and 10 months for back and hip. 

But remember, she probably had Crohn's for a bit longer than since January...I would guess maybe even years.


----------



## Clash

I keep missing things. She's being evaluated by a rheumatologist soon as well?(I saw mlps post).

Fc looks awesome. If you haven't had the rheumatologist appt yet then I'd just keep on keeping on. Goodness knows things will change when they change ie appt, test results, symptoms. If everything is good now I'd just enjoy!


----------



## Sascot

Great news on the FC. Hope they can help the other issues


----------



## crohnsinct

No rheumy appt yet. Mentioned her aches and pains and recent back and hip and the fact thAt she can't sit for too long without having pain and he said bring her in sooner. May be sacroiliitis. 

Ps. O also is having hip issues. We are treating it as injury for now


----------



## crohnsinct

She is enjoying things tonight!  Doc wrote back and approved 30% food so a lot more than we expected!  Happy Days!  

O is nervous that if the increase in mtx doesn't work for her he will say EEN for her as well...at 16 she isn't as likely to be so amicable to that suggestion:ylol:


----------



## Maya142

Wonderful that the FC has gone down!!! Really hope diet works for her this time. Seems like EEN really does work like magic!

You know what I think -- T needs to see a rheumatologist as soon as possible. If it is JSpA, there is no point in letting it get bad. For M, it was mild to for a while and we kept calling it "sports injuries". I wish we had addressed it then, instead of letting it get out of control.

JSpA is also cyclical like Crohn's - sometimes kids are flaring, and other times they're just fine. My kids now do live with pain, but when they were first diagnosed, there were days were they were just a bit achy and stiff and even days when they felt totally normal. It wasn't always excruciating pain, all the time. 

In fact, there was a time M was ONLY on Tylenol and nothing else and she did great (it did last only 3 months :lol.

Signs of JSpA - back and hip pain, heel pain, knee pain, pain after sitting for a long time, morning stiffness, pain that improves with activity, pain that migrates from joint to joint... all this makes it very hard to diagnose. I don't know the numbers for JSpA off the top of my head, but for AS, it takes around 8-10 years just to get a diagnosis!!


----------



## my little penguin

DS started complaining of joint stuff in 2012 but was followed by a Rheumo
And dx as JSpA in June 2014 so that shortened the time but still takes a while


----------



## Maya142

M started complaining of joint pain at age 8 and wasn't diagnosed till 12. S started complaining at age 9 and wasn't diagnosed till 14. It took that long even though my husband has AS. We just didn't believe that they'd inherit it and when S did, we figured there was no way that M would too (what are the odds, right? Well, high apparently).


----------



## crohnsinct

Yikes guys!  Scared about what that means for poor T.  Took three years for GI to pay attention to her and now the joint issues...we are just hoping for a referral to rheumy at this point...and then more waiting?


----------



## Maya142

Well, the fact that she has Crohn's might speed things up. And if she sees a good rheumatologist that will too. M really should have been diagnosed years earlier, but we weren't seeing a good rheumatologist who just wanted to wait and see..and wait and see and wait and see....We should have switched much earlier but we just blindly believed her.


----------



## Optimistic

Crohnsinct,
I'm so happy to hear about the FCP and the FOOD!!!! Good for her.

I hope you get some clarity on the joint issue soon. Hate that is clouding over the good progress she is having against Crohn's. I guess we celebrate the victories we get and hope another one is around the corner.


----------



## crohnsinct

Had T's appointment to investigate joint issues.  Didn't get far with that.  GI just said it could be related to IBD inflammation or independent.  IF IBD related control the Crohn's and joints get better.  If not, then rheumy.  So his plan is to try to figure out what is going on with her Crohn's...it's only been a year...what's the rush?  

So, after just a week at 30/70 he asked her if she would like to move to 50/50...ummm that is a no brainer!  He said given what happened last time, pull another FC in 4-6 weeks...then he said actually let's scope at the same time.  He said he really wants to scope her and she has to be on at least 50% food for at least 4 weeks to get an reliable information.  

He also said he isn't confident that there is any great benefit as far as inflammation goes to the diet we are using and that it is o.k. to add back in grains and such BUT keep it clean and healthy.  

T was thrilled and said she could actually live at 50/50 and a total of 2000 calories with EEN once or twice a year as long as she didn't have to do the exclusion diet.  

So scopes around Christmas and we will see.  I think the committee feels it is just a matter of time before inflammation returns...the issue is at what percentage of food and after how much time...shall we start a pool?


----------



## Jmrogers4

I hope for her sake that inflammation doesn't return too quickly.  Drives me batty when they take a wait and see approach but you know there's something going on.


----------



## Farmwife

I bet 6 weeks once the 50/50 is added. At least that held true for Grace. What does the winner get?

I do hope and pray that it doesn't come back and she feels great!


----------



## crohnsinct

Farmwife said:


> What does the winner get?


Their own personal ball vice! :ylol:


----------



## Maya142

I bet 4 weeks on the 50/50 diet! Although I really hope it works and you can be the first to tell us about how diet = clean scopes .

Sending BIG HUGS :ghug:.


----------



## crohnsinct

I wouldn't be the first...Optimistic beat me to it.  Plus I don't think her child uses any meds...T is on mtx.  But I would settle for second place!


----------



## Clash

I'm going with Maya142's whole post. 4 but hoping she kicked CD butt and all is pristine and perfect!


----------



## my little penguin

3 weeks to feel like crud
6 weeks to be in full out flare 

Good luck


----------



## CarolinAlaska

This is terrible.  Makes me crazy.  If the doc and everyone knows she's going to be sick in just a few weeks, why aren't we giving her real treatment!!!

Here's to scrapping all this and begging for Remicade!  Why must the docs have to have them in the hospital before they take them seriously?!


----------



## kimmidwife

I second what Carolin said. wth Is wrong with these doctors?


----------



## crohnsinct

Update: 

T had her scopes 1/15.  Bottom line not  a lot better but not worse.

One new ulcer in duodenum - there weren't any at dx. 
Only one ulcer in stomach - at dx there were many 
Terminal Ileum had cobble stoning - at dx he didn't mention that...just inflammation.  

FC is 514. 

His advice is to stick with Entocort 3mg daily and the 15mg weekly mtx.  

He felt joints issues are not caused by IBD and gave us a rheumy referral.  

Rheumy did a pelvic MRI.  No sign of inflammation.  She is chalking up T's joint issues (ribs, knee, ankle, hip, shoulder and lower back) to activity...more specifically softball (she is a catcher).  She advises PT and Tylenol.  Will call to check in with us in a few weeks.  If PT is working then continue, although I am sure insurance will not approve it. If PT doesn't work rheumy and GI will talk and see what they can come up with. 

Right now we are dealing with a concussion so  will pursue PT as soon as she feels better.


----------



## ronroush7

Sending support.


----------



## pdx

Oh man--you do have a lot going on lately...  Hope the concussion heals quickly.  (I know you don't need any convincing of this, but I'd still be pushing for biologics with that FC and those scopes results.)  :ghug:


----------



## ronroush7

Let us know.


----------



## Optimistic

I am sorry to hear all of this.

I'm really not sure how to parse this all out.  Many hopes here - that you and GI have some wisdom and clarity on next steps, that the insurance company cooperates on the PT and it helps, and that she heals quickly from the concussion. 

:ymad::sign0085::wine:

$*&^         
insert whatever word you choose above

Crohn's sucks.


----------



## my little penguin

Big hugs
Still confused how entocort can be a long term plan
It's still steriods even if the side effects are lower 
Add in she still had inflammation found on the scope 
Wishing you the best


----------



## Jmrogers4

Goodness, seems like she got it coming from all directions, hope things heal quickly, PT goes swimmingly and all the rest gets a good solid plan that brings about remission.


----------



## Mehita

Like MLP said, I'm still confused too. What is your momma gut telling you?


----------



## crohnsinct

Yeah I know:yfaint:  

For right now her Crohn's isn't bothering her as much as her joints are...but then again joint pain is usually one of her signs that something in her gut is off.  

We are going to do the PT and Tylenol and see if that helps clear up the joints.  If it does then we will sit tight and wait and see what happens with the gut.  If it is a repeat of past performance her FC will go up to 700 or so and maybe then he will decide to do something.  If her FC goes up and/or she experiences more GI symptoms AND he doesn't move then we will pursue another opinion.  

Her next follow up is in May and Rheumatologist is calling in two weeks to see how joints are.  She starts PT today. :thumleft:


----------



## kimmidwife

Hope the PT helps and the concussion heals quickly!


----------



## CarolinAlaska

I hope she starts feeling better all around.


----------



## crohnsinct

T continued to have joint pain and over the past few weeks GI issues.  We pulled her FC a little early.  It was 508.  No change since her last scopes.  

We have tried EEN followed by diet twice.  She has been on Methotrexate for a year and Entocort (steroid) for 10 months.  The GI feels it is time we move to Remicade so I gave the go ahead today. 

Hate that mild disease doesn't respond to moderate drugs but looking forward to her getting to a true deep and sustained remission.


----------



## Jmrogers4

Hope it works wonders for her.  I totally get moving on to remicade when it seems like you shouldn't have to although I'm glad we did with my 20/20 hindsight now.  If only I had that crystal ball before hand.


----------



## my little penguin

Glad to hear

Hope things improve quickly with remicade


----------



## pdx

Hope it really works really well for her, and quickly!


----------



## ronroush7

pdx said:


> Hope it really works really well for her, and quickly!


Hope so also.


----------



## Sascot

Really hope it works wonders!


----------



## Maya142

Really hope it's her miracle drug and that it works quickly!


----------



## Mehita

I hope it works wonders for her and quickly!


----------



## kimmidwife

Hope the remicade is her magic!


----------



## Pilgrim

It sounds like the right move. How is she handling the idea?


----------



## crohnsinct

She is a little miffed.  She wanted to try EEN and diet again but the doc and I both think that isn't a fix. Just more of what we have been doing and will only delay the inevitable.  

She sees her sister on Remi and knows it works and the infusions are nothing but she HATES the scheduling aspect.  She also hates attention and docs offices so that doesn't help either.  

She will love it though once she feels better!


----------



## Gmama

Well CIC I know you think of literally everything, but what about Humira as an option. Sorry, if I missed this in the post. Shots usually twice a month after the loading dose, (it does burn, but in 10 seconds it's over) could help with her joints, she doesn't need to miss school or anything else with you controlling the schedule. Hope you get her sorted out quickly! Hugs!


----------



## crohnsinct

Hey girl!  Nice to hear from you again and see you are still hanging around!  

Don't worry I appreciate any input!  

I didn't get to ask the doc his reasons exactly but at scopes in January he said " remi or humira but remi is better and humira is just a mess that you don't want to have to deal with". I don't know what the supposed mess is. But I do know he has told me in the past thAt he likes to use Remicade first so if or when it stops working maybe they will be in college or working and then can switch to humira when time off is a much bigger issue. Also when they are young and growing remicade offers more dose flexibility than humira. Umm and last is convenience of labs and his office gets to see the kids more often. He has the infusion nurses report back on how they think the kids "looked" in addition to how they say thet feel if it doesn't match up. 

So basically our GI is a control freak. No wonder he and I have a love hate relationship


----------



## crohnsinct

Yikes!  Have I not really updated T's thread in a year and a half?  I think some of her goings on have gotten posted to O's thread.  

Anyway, she has been on Remicade since 4/16.  Doing really well. 

FCP of 89 in August.  

Recently with our move to the west coast some complaints of stomach pain,  nausea and recently joint pain.    

You may know our new GI doesn't like FCP of over 100 for small bowel disease and questioned whether T's FCP was going up or coming down.  Gi pulls FCP at every infusion but T's body didn't cooperate until the February infusion.  FCP = 250.  

So GI wants to repeat FCP in a month and take it from there.  Not really sure how he went from FCP of over 100 = treatment adjustment to retest in a month but he is doing very well by O so I am going to trust him for now.


----------



## kimmidwife

Never a dull moment. Did he discuss a plan or what the next step will be?


----------



## Pilgrim

Hopefully it just needs a little med tweaking or maybe it's the time of year where the kids get set off by flu etc. I think it's good he's looking for a trend and not a snapshot.


----------



## crohnsinct

Yes, if elevated he will adjust her Remicade dose.  

We went back and forth a lot last night after O's result came in.  He says treating to target fecal calprotectin has revolutionized his practice and made a big difference in his patient's lives.


----------



## pdx

crohnsinct said:


> We went back and forth a lot last night after O's result came in.  He says treating to target fecal calprotectin has revolutionized his practice and made a big difference in his patient's lives.


That is so interesting. I wonder if that will become the norm in the future.


----------



## crohnsinct

Hey y'all...T's repeat cal pro was done 4 weeks after her infusion and returned at 160.  So down from the 250 but still elevated and only 4 weeks after infusion.  She is symptomatic.  GI expects cal pro to continue to rise until next infusion and says she likely is not at mucosal healing.  

We are moving her schedule from every 8 weeks to 7 weeks for this next infusion and possibly increasing dose...we will discuss at next infusion because that will also be her visit.

His tidbit for the day: 

He mentioned that research shows that when tested, greater than 80 % of patients on Remicade on 8 week interval do to have therapeutic levels of the drug at 8 weeks.


----------



## pdx

Sorry to hear that she's still having symptoms. Let us know what you decide about dosing at your appt. (What dose is she on right now?) As you know, we're making similar decisions this week...


----------



## crohnsinct

Yeah...funny how your daughter and at least one of my daughters seem to run parallel to each other.  

She is currently at around 5.5mg/kg every 8 weeks. We switched to this GI in November.  She was complaining of stomach pain and nausea but we were all thinking it was more likely the stress of the move, new school etc.  It is o.k. with me when this GI says that because A) I was thinking the same but B) he pulls cal pro at every infusion so he watches the kids VERY closely. 

Good luck at your appointment.  Keep us posted. Ironically T has her infusion and appointment next Friday.


----------



## crohnsinct

T had her infusion on Friday and the GI said if she had another elevated (150's or more) cal pro we would escalate therapy.  

Oddly her cal pro came back at 97.7. Her first level 7 weeks ago was 250.  Then went down to 160 four weeks later wth no intervention and another 3 weeks later down again with no intervention.  I am not complaining!   

I haven't heard from the GI yet but we changed her schedule to every 7 weeks and I am assuming that we will just keep that change for now.


----------



## my little penguin

Great news !!!


----------



## pdx

Glad to hear that the calprotectin numbers are going down. I love that your new GI pulls calpro numbers so frequently!


----------



## crohnsinct

LOL PDX. He is borderline obsessed with them!  

Actually he said non evasive monitoring and optimizing drug dosing are the main focuses of his research and practice.  He doesn't scope very often.  It seems he scopes at dx and then at 18 and maybe again when he releases a patient to adult care.  Otherwise he just watches cal pro and other biomarkers.  Not the norm but seems to work for him.


----------



## my little penguin

What happens woth small boweldisease where fecal cal doesn’t accurately reflect level of damage ???
Not scoping can be very risky 
Especially if dx young since cancer risk is much higher 
Hence scopes every two years for monitoring after 5-7 years just for cancer alone 

Now if his average patient is 15-17 at dx 
Then not scoping till 18 isn’t a big deal 
But if dx young (less than age 10) 
That is a great big deal 





> have a greater risk for cancer, especially gastrointestinal cancers, both in childhood and later in life.
> New analysis of 9405 children revealed that during follow-up through adulthood, 497 people with childhood-onset IBD had first cancers, resulting in a rate of 3.3 first cancers per 1000 person-years. This compares with a rate of 1.5 per 1000 person-years in the general population.
> 
> Ola Olén, MD, PhD, a pediatric gastroenterologist and senior researcher at Sachs' Children and Youth Hospital, Stockholm South General Hospital, Sweden, and colleagues found that this high cancer risk has not fallen over time and thus does not appear to be affected by currently available therapies.
> The investigators used data from a Swedish nationwide database. The large study allowed the investigators to stratify data for calendar period, thus making it possible for them to comment on changes over time. They used International Classification of Diseases codes recorded prospectively in clinical practice as proxies for disease extent and disease behavior. They report their findings online  September 21 in BMJ.
> The researchers note that their register did not contain information on smoking, nor did they have detailed information on disease severity, disease extent, or disease behavior.
> 
> The new results are similar to those documented in a US study of childhood-onset IBD with ulcerative colitis and another of Crohn's disease with onset before age 22 years.
> Risk Factors for Cancer
> 
> "Our study confirms reports that primary sclerosing cholangitis is a risk factor for cancer in inflammatory bowel disease," the authors write. "It adds to previous literature in calculating a precise risk estimate in children with inflammatory bowel disease. More than 700 patients with inflammatory bowel disease in our study had a diagnosis of primary sclerosing cholangitis, which corresponds to 7% of patients with inflammatory bowel disease (11% in ulcerative colitis and 3% in Crohn's disease)."





> In addition, the investigators found that chronic liver disease, longstanding colitis, and a family history of any cancer in relatives younger than 50 years of age were also strong risk factors for any cancer in patients with childhood-onset IBD. Patients had a higher risk for cancer in the first year of follow-up, likely because of improved detection and surveillance.
> Type of Cancer
> 
> The investigators calculated that gastrointestinal cancer represented 40% of cancers documented in individuals with childhood-onset IBD. The hazard ratio for gastrointestinal cancers was 18.0 (95% confidence interval [CI], 14.4 - 22.7) on the basis of 202 cancers in their cohort of patients with IBD.
> When the researchers examined the risk for lymphoid neoplasms in childhood-onset IBD, they found a 2.7-fold increased risk for lymphoid neoplasms (95% CI, 1.7 - 4.2) in patients with childhood-onset IBD. The relative risks for lymphoma were similar in patients diagnosed with ulcerative colitis and Crohn's disease.
> Effect of Treatment
> 
> When the investigators stratified the risk for any cancer by medical treatment, they found no clear differences between groups. "We cannot rule out that thiopurines or TNF [tumor necrosis factor] inhibitors increase the risk of cancer, as our study was not big enough to recognise whether drugs are a major risk factor for cancer development in children and young adults," the authors write. "Instead, we suggest that extent and duration of chronic inflammation might be the main driving mechanisms underlying the increased risk of cancer."
> In an accompanying editorial, Susan Hutfless, PhD, assistant professor of medicine at Johns Hopkins University in Baltimore, Maryland, agrees that the data are not sufficient to make a conclusion about treatments and cancer risk. "We are unable to determine the relation between cancer risk and use of immunomodulators, biological agents, or their combination owing to incomplete information on exposure to infliximab, as well as insufficient follow-up and power," she explains in the editorial. "The study would require at least five times as many participants (or person years of follow-up) to be powerful enough to detect a doubling of lifetime risk of cancer associated with immunomodulators or biological agents."



From
https://www.medscape.com/viewarticle/886132


----------



## Maya142

That actually worries me too - not scoping till 18 isn't the standard of care. If the child was 16 or 17, well, then I'd get it. But like MLP said, small bowel disease can have low FCPs. And Crohn's is sneaky. And with your family history of Crohn's and O's severe IBD, BOTH girls should really be scoped often.

At CHOP they will go 2-3 years if a patient is doing REALLY well. Otherwise they have scopes every year or so. Sometimes every 2.

Once they hit 8 years from diagnosis (and I know T isn't there yet, but not sure about O?), then they scope *yearly* for colon cancer. M is at 5 years. She will be scoped again this summer to make sure Cimzia is working, since we just re-started it. It will be 2 years from scopes this summer. Her GI won't let us go longer than that.

Does he do MREs for small bowel disease instead of scoping? Because I could understand that.

Plus you HAVE to scope to know they are healing - you may have mucosal healing but ideally you want histological healing too. It's possible now with biologics. But you can't know without doing scopes.


----------



## Jelly loves Peanut butter

Glad FC is improving...and how about her symptoms, are those improving as well?  Hope she is feeling better.


----------



## crohnsinct

Well I really haven't had a detailed discussion about scopes with him.   Just said it seems because that is what I heard him saying to another patient in the infusion center and he hasn't mentioned scopes for either girl yet. I will put that on my list of things to discuss in may. 

Our last gi didn't scope often either. 

I think this guy watches calpro so carefully and has such low thresholds and is so aggressive with dosing that I think he is confident he is treating disease. For example with small bowel disease he likes calpro under 100 otherwise he adjusts therapy. If calpro isn't elevated and anpatient is still symptomatic I would imagine he would scope andnage to see if disease is the cause. 

As far as cancer screening goes I do think he may start those at 8 years post dx which O is coming up on. But I will get the total story when I see him next.


----------



## Maya142

But T's FCP is 97.7 - that is a little too close to 100, considering she has had on at 250 and one at 160. Will he pull another one at 4 weeks? Because she is basically at 100...

I would definitely discuss scopes with him - the other child may have a completely different history so different treatment. Hard to say without knowing the full story. 

I would speak to the doc and ask about histological healing and how we can be sure that is happening without scopes. Even mucosal healing...FCP is great, but it isn't as accurate as actually seeing the mucosa. 

Plus, what about things like strictures, fistulae and abscesses? An FCP may not go up with a stricture...you would not know without scopes (if it's in the colon or duodenum) or an MRE. Same with thickening - you could catch it before it becomes a stricture if you do MREs regularly.


----------



## crohnsinct

He hasn't commented on T's last FCP but when we spoke at infusion he said if it was 150 or above we would escalate.  I think moving to every 7 weeks from 8 is a bit of an escalation.  Also, the FCP is trending downward so maybe he is just waiting for one more FCP to see if it is still going down or if it turns and goes back up or stays stable.  

Symptom wise she has been pretty good.  No complaints for a while.


----------



## crohnsinct

Just a quick update...T's cal pro was 157 in May and just came back this week at 183.  She also has lost 5 pounds.  She feels fine but hasn't been eating well.  The GI says that all his teen patients lose weight in the summer because they sleep in and miss breakfast and therefore are only eating two meals.  For her it is compounded with not being able to eat on game days (nerves).  

The plan is to repeat cal pro in one month.

Interesting thing is he said he had hoped it would be within target <150 so it looks like he has adjusted target up from 100.


----------



## my little penguin

Is she eating breakfast later ??
My teens sleep in
But stay up later so they are still eating the same if not more 

5 lbs is concerning 
Given increasing FC


----------



## crohnsinct

Yes but because she eats breakfast late there is no lunch and then she eats dinner.  She doesn't stay up late so no chance for an extra meal.  She is definitely not eating enough to maintain her weight but is lack of appetite a summer thing or disease thing....that is the question.  She is going to try to concentrate on eating and see how it goes.  I am glad he is only asking us to wait 4 weeks and then retest.  This way he could adjust therapy at the next infusion as she is on an every 7 week schedule.  

The 5 pound drop was over 7 weeks.


----------



## Jmrogers4

Hmmm mine sleep in late but eat throughout the day. Jack is working so he is eating breakfast 5 days a week but my other son sleeps until noon and doesn't stop eating until he falls asleep. 
In the past Jack regardless of sleeping in has made up missed breakfast throughout the day,  lack of appetite has correlated to disease activity or other sickness


----------



## my little penguin

Yeah that ^^^

Something smells funny 
Teenagers usually don’t need to “think to hard” about eating 
Something disease wise is off In my “mommy “ opinion 

My gastroparesis kiddo is eating all day 
He may not eat a lot at one setting 
And increased his formula intake (due to nausea )
But calorie intake is through the roof 
 almost like a normal teenage boy 

When flaring he picks at food 
And we have to bug him to eat


----------



## Maya142

My kiddos had to eat breakfast because they take NSAIDs in the morning and evening. But over the summer, they wouldn't eat much in the morning but would eat later in the day. Evening/night snacks were very common - like post-dinner snacks because they'd be up late.

I would make an effort to increase her calories and if that doesn't work, maybe investigate  more and see if her IBD is flaring.


----------



## crohnsinct

T's follow up cal-pro came back at 195.  Weight is down only another few pounds but holding steady.  

GI isn't changing plan (7.5mg/kg every 7 weeks).  Not taking cal-pro or blood labs at next infusion which is Wednesday.  Next labs (blood and fecal) will be 10/16 and if cal-to climbs more then we will discuss increase in dose or shortening interval.


----------



## crohnsinct

Hey y'all.  

T's calpro came back at 97.   97 with no intervention what so ever. Not worth of dancing poop but enough for me to call the dogs off. 

So there you have it.  Calpro could be highly variable and the GI was right not to freak and run.  Imagine that.  Their fancy pants medical schooling and interning and residencies means something.


----------



## pdx

That's a good number! 

I wish someone would do a study where they test a bunch of people's calprotectin every day for like 2 months, so we would know what the normal variability is for that test...

How are her other symptoms lately? Hope that she is doing well.


----------



## crohnsinct

Wow!  Good point PDX.  I have seen older studies on time of day variability and maybe some over time but I don't think the study size were large enough to tell us anything really.   

She is doing very well.  Her weight has gone down another 3 pounds but I put that down to a switch over to vegan diet. She is eating way more food but it just isn't calorie dense.  We are adding lots of nuts to keep those calories up.


----------



## crohnsinct

Dropped vegan diet weeks ago.  Eating lots of very fattening food.  Down another 2 pounds.  Just ugh!  Waiting for latest Calpro. Off and on nausea and "funny tummy" but otherwise fine. Pain is her tell tale symptom and none to report.


----------



## pdx

What is her total weight loss since the beginning of last summer?


----------



## crohnsinct

11 pounds


----------



## pdx

You can probably guess what I'm going to say...  I would want scopes and imaging at this point. Kids' symptoms can change over the years, so I would not disregard nausea and weight loss just because she isn't in pain. 

If not imaging, I might push for a Remicade dose increase--is she still at 7.5 mg/kg every 7 weeks? Does she have more symptoms towards the end of the cycle?


----------



## kimmidwife

I think PDX is right. She needs a scope!


----------



## my little penguin

Sorry but 11 pounds 
She needs scopes /MRE and pillcam
ASAP 
That is not normal 

Get a two for one deal for both kids


----------



## Maya142

Yes, sorry, 11 lbs is a LOT. You know the road we went down with M - it was just a few pounds here and there, until finally it was 15 lbs and that caught her GI's attention.

Can she drink two Boosts a day if she is not eating enough? That is what our GI and dietician wanted to do when M had lost a lot of weight - add formula if she could not eat enough. M was unable to drink enough, as you know, but since T did EEN, maybe she can.

And yes, while I would certainly try to get her weight up with food and formula, I would also want testing - an MRE and scopes. Given her FCP shows inflammation, it could be causing the weight loss - interfering with absorption of food, for example.

Please, please catch it before it goes too downhill. M was SO sick when she was severely underweight. She is lucky she does not have permanent heart damage.


----------



## Pilgrim

I am sorry to hear this Crohnsinct. H couldn't gain on Vegan but she did put weight on pretty quickly after we liberalized her diet.

I hope the answers are more med adjustment and less new treatment.


----------



## crohnsinct

MLP - two for the price of one. LO! 

cal pro back: 338 

Appointment for both girls next Friday.  Should be fun.  

PDX - right!  She is at 7.5 every 7 weeks.  Plenty of room to raise dose or shorten interval.  Pretty sure that is what he will want to do.


----------



## crohnsinct

Update: 

Appointment today.  T definitely down 11 pounds.  At 50th percentile.  GI says she is a 70th percentile kid (lots of muscle due to softball/catcher).  Given the cal pro and TI disease he suspects inflammation is the cause and not poor eating/disordered eating.   

I was mistaken.  Her old dose was 5mg/kg every 7 weeks.  We are increasing to 7.5 every 5.  

Given there has been some nausea and wonky stomach (very little but comes and goes), weight loss and increased cal pro if she isn't doing much better (gaining weight, lower cal pro and no nausea) he will do a pill cam. 

Going back in mid March but she is to email him updates (weight and how she is feeling) until then.


----------



## my little penguin

Hugs
Why just pillcam
Disease in kids is known to change type and location as they age 
They KNOW THIS which is why you need SCOPES /MRE AND PILLCAM 
Not just one because at one point they only had disease in xyz location


----------



## Pilgrim

I thought kids had MRE or pillcam, not both.


----------



## crohnsinct

MLP: My guess is no colonic symptoms.  I get what you are saying about disease changing over the years but all her symptoms right now reflect upper tract disease.  

Pilgrim: I think most GI's use one or the other and it just depends on GI's experience and preference as to which is more accurate or usable.


----------



## Maya142

Our GI said that typically they do an MRE or a pillcam to check the small bowel, but sometimes they do both. My daughter has had both at different times.

I hope the increased dose of Remicade helps T!


----------



## crohnsinct

wanted to add if there is a suspected stricture or blockage they would likely go for the MRE first.


----------



## pdx

Hope the dose increase works--I'm not surprised that 5mg/kg wasn't enough.


----------



## crohnsinct

T's cal pro went down to 256 the first infusion after our December visit and GI said since it was going down we were going back to old schedule of 7 weeks but we kept 4 vials.  Next infusion at 8 week schedule was last week and cal pro 275.  She also an appointment on Friday (with O).  I will let you know what he decides.  I am hoping a schedule tweak.  She still hasn't gained ay weight but she stopped losing so at least there is that.  She also feels fine.


----------



## crohnsinct

Well GI says since T doesn't have any symptoms and gained 2 pounds he is willing to sit on the 275 cal pro and see how things go.  Still at 7.5mg/kg every 7 weeks.  If she consistently goes above 300 or 400 then maybe we will make a move.


----------



## my little penguin

Seriously ...
What happened to truly monitoring 
Putting some arbitrary number as a line in the sand 
It is only one test of many that should be done regularly to make sure things are ok 
Weight loss is a big red flag 

Does she reliably report symptoms?
Teenage years are tough 
They don’t want to be sick so are less likely to self report symptoms 
More likely to just say “fine”


----------



## crohnsinct

Hey y'all, 

With all the O drama, it appears I haven't updated you on steady as she goes T.  

Not a lot going on.  As of June 7th, her cal pro is 462.  No word from GI.  I guess I could ask him but honestly I need him focused elsewhere right now.  

She has never "reliably" reported symptoms but with everything that is going on with her sister now I think she gets it.  I spent some quality time with her last night and she promises she feels fine.  

We have an appointment with the GI in September.  Next Cal pro in August.  

That's it folks.  Nice and simple.


----------



## my little penguin

I will leave it be for now


----------



## crohnsinct

LOL MLP!  My sentiments exactly! 

Seems he would have learned his lesson with O!


----------



## Jo-mom

I'm caught up - I read all the posts on T from the beginning.  If I want to be part of this committee, I figure I would do my homework.  Hoping the best for T as well.


----------



## crohnsinct

^   Go to the head of the class Jo-mom! Watch out we will make you president of the Committee!


----------



## Maya142

Really hope he will address T's inflammation SOON. We don't want her to end up like O!!
Remind me, she's on Remicade 7.5 mg/kg every 7 weeks, right? So enough room to go up.

462 is high for small bowel disease, but given that O is so sick and T has an appt. coming up, I'll play nice till the appt.


----------



## crohnsinct

Yep 7.5mg/kg Q7.  I think her sweet spot is 7.5mg/kg q6 because once we had to infuse a week early because of a trip and her cal pro went down to 160's that time.  Not ideal but a lot better.


----------



## crohnsinct

Well, without any intervention what so ever T's latest cal pro came back at 226.  She feels fine and has gained a little weight.  It could be because of the weight lifting she is doing for softball but I will take it.  

Guess these docs actually know what they are doing after all by not freaking out and playing the watching game.  Wish I was better at that game.  

Yeah I know 226 is still not the greatest but it is a lot better than the 300 and 400's she has been getting so I will wait and see if she is on a downward trend or still bouncing around before I freak out.


----------



## Pilgrim

226 is pretty great! But I know that can vary from kid to kid. A good drop in calpro is worth celebrating.


----------



## crohnsinct

T had her check in appointment today.  Her cal pro is 65!  Lowest it has ever been in a long while.  Got that result with no change in therapy whatsoever!  Now fair disclosure, we did let up on her diet some over spring and summer given softball and mommy the diet drill sergeant being in the hospital and preoccupied with O.  In August we doubled down our WFPB eating efforts.  IDK if that has anything to do with it though.  

He decided to reduce her dose back down to 5mg and extend her interval back out to 8 weeks.  Personally, I wouldn't do that.  Not given just one semi normal cal pro.  I would at least wait for two.  Plus, last time he did that her cal pro shot right back up.  But if you have read O's thread you will know the mood I am in.  Just going to trust him on this.  She is doing great.  So let's give it a shot.  Her psoriasis is flaring something fierce so maybe this will help as her psoriasis is Remicade induced.  He is very good about monitoring and will adjust if need be.  

In other news, he is thinking about when she goes to college.  He asked her if she would like to switch to an injectable drug to make it easier in college re: finding an infusion center etc.  I told him home infusions make that a non issue and that I wasn't comfortable rocking the boat especially given what O experienced with her med change.  However, she is in remission and O wasn't.  Her disease is mild. She was VERY interested in it.  We will discuss at her next appointment in June.


----------



## pdx

That's great that her cal pro is so low. 

I know you're not big on methotrexate, but it worked wonders for my daughter's remicade-induced psoriasis; it completely resolved when she went back on mtx, and her dose is pretty low--12.5 mg/week. (I wonder if an even lower dose would have worked for the psoriasis. We keep it at that level because it also seems to help therapeutically with E's Crohn's.)


----------



## crohnsinct

Aw thanks but actually T got the psoriasis while on MTX. Same with O. When we took them off it made no difference. Actually now that I think of it taking O off Remicade made no difference with hers either. Tacrolimus didn't help but steroids calmed it down a good amount. 

Kills me that some drugs work for some and not others.


----------



## Maya142

Just catching up on this thread - sounds like both girls have psoriasis that's not Remicade induced. How are T's joints these days? I remember her having bad arthralgia early on and I know she's not one to complain, but obviously with psoriasis, you want to watch her joints and make sure there are no signs of arthritis.

I agree with you that he shouldn't have moved her Remicade - she's had what, like 4 high FCPs? Which makes this low one an aberration - I would wait till she's had a few normal results.

I also agree with you on not moving to a different biologic when Remicade is working...especially since allergic reactions can happen when you re-try Remicade (although not all kids have them - both mine did not). But I can see why an injectable biologic would be a draw for T - both my girls MUCH prefer injections - 10 seconds and you're done!

But at both my daughter's schools, we would have had to ship the drug to the health center, since the mail room takes time to process packages and of course, these meds are shipped on ice. My girls went to school close to home, so they were home enough during the first year or two of college that we shipped the drugs to home. Once they moved to off-campus housing it became a non-issue.

But if T goes to a school that requires freshmen to be in dorms, and kids mostly live on campus, then I would argue that a home infusion is almost easier than setting up the delivery of the shot and going to the health center to get it   - with an infusion,  it all comes to you!


----------



## crohnsinct

Haven't updated here in a while.  

For T's next infusion we were able to extend out to the 8 weeks and her cal pro went up to the 260's.  This was with 7.5mg/kg Q8.  So next infusion was a 5mg and 8 weeks later her cal pro is 433.  Who didn't see that coming?  

Pretty sure we are going to sit and wait and watch as the last time that is what we did and cal pro went down on it's own.  But not a good sign given she is also on strict SCD.


----------



## Jo-mom

This isn't surprising.  You predicted this might happen.  She obviously does well on the 7.5 mg dosage.  Has she been exhibiting any other symptoms?


----------



## crohnsinct

She has TI disease and her only symptoms ever are loss of weight, pain, nausea and wonky tummy.  She is notoriously stoic and won't utter a complaint until it is really late in the game.  She has said about a half dozen times that her stomachs off.  But it was on and off and the minute I turn to look at her she plays it off.  

Long way of saying...Who Knows?!


----------



## crohnsinct

Most recent infusion T's cal pro is down to 226 without any intervention.  Interesting and yes you read that number right.  Funny that her and her sister are only 6 points away but according to T she is now winning.  The things siblings could find to compete with  No ore from GI so more watching and waiting.  Still feels and looks good.


----------



## my little penguin

Can we get a scope please with imaging ???
I don’t like the simmering inflammation.


----------



## crohnsinct

IKR MLP.  But you know our GI.  He doesn't scope or image easily.  But I just keep thinking of Catherine's Sarah and think that T could find herself in the same position if we are not careful.  Her next appointment is supposed to be inJune.  That is the appointment he is going to talk about switching to Humira for convenience. I will bring up scopes and imaging then.


----------



## Maya142

I agree - the fact that small bowel disease can be silent makes it really scary...I also cannot stop thinking about Catherine's poor girl. Leaving T with  simmering inflammation seems a bit nuts when you know the dosing of Remicade that does work for her - 7.5 mg/kg every 7 weeks! I would definitely push for imaging - she's had simmering inflammation for a long time now.  I would be worried about strictures and other complications considering how sick her sister got due to years of simmering inflammation!! 
Doing imaging before switching to Humira would make sense  - so you have a baseline. Perhaps you could sell it to him that way?!


----------



## crohnsinct

Well T had her infusion 5 days early so closer to the 7 week mark this time and Calpro is 302.  Looks like it has settled in the 250-300 range.  Still looks and feels pretty good GI wise but is starting to complain of joint pain and that is usually and bit of an indicator for her. She has a Telehealth appointment early May.  We will see what happens.


----------



## Pangolin

Sounds like the calprotectin has been elevated for long enough to be a concern. You know there's inflammation in there, and you want to make sure things are moving in the right direction. Perhaps an MRE and/or a colonoscopy would be in order to help you figure out whether things are getting better or worse? If they're not improving (and maybe it's already obvious they're not), I assume you'd be looking at more or different drugs to try.

I feel like in my son's case we kind of got stuck in a mediocre state for a long time where it wasn't clear whether things were getting better or worse, so I think it's important to figure that out and then try something different if improvement isn't happening.


----------



## Maya142

I'd also be worried about this long-term simmering inflammation. With small bowel disease, it could easily lead to scar tissue and then strictures. I would definitely push for 1) imaging so we know how bad the inflammation is and 2) more frequent Remicade infusions at a higher dose or a med change - she clearly does better on a higher dose. I would personally try to make Remicade work as long as possible and would try a higher dose since that's worked for her before, rather than switching to Humira or Stelara, for example. Either way, her GI needs to address the inflammation ASAP,  otherwise she could end up with severe disease the way O did, due to simmering inflammation. 

Honestly, I am really shocked that your GI is ok with her FCP being 250-300 for months at a time- my kiddo's just came back at 200  (it was 50 when it was last checked) and she has inflammation in her terminal ileum (and colon, but it's worse in her TI and that seems to be her problem spot) and based on her symptoms (severe diarrhea) her GI immediately wanted to escalate her dose of her biologic and is now trying to get it approved.


----------



## Catherine

I think the FCP is too high.  With small bowel disease would ask for MRI.


----------



## crohnsinct

T had her Telehealth today and shocker the GI said that it has been in the 300-400 range for too long and he is certain that if he scoped her he would see inflammation.  She reports that she feels fine.  He wants to increase dose back up to 7.5mg/kg Q6.  

I am happy.  

He also wants her to stay 100% SCD.  He is a fan.  T is about 80% SCD.  She she comes with me to work at the shelter she gets treats like Dunkin, a burger (bun SCD illegal, as is the cheese and ketchup) or other treats from the shelter like cookies, grilled cheese etc.


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## Jo-mom

I'm glad she is going back to her Q6 higher dose cycle.  I don't think she should have changed.  Did they ever check her remicade levels?


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## crohnsinct

He doesn't check levels often.  If cal pro is high he just assumes inflammation and they need more drug.  She was at a pretty low dose so it was an easy and plausible assumption.  I think maybe if she was at 10mg/kg Q4 he might have checked levels and antibodies before abandoning the drug.


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## crohnsinct

Interestingly, T's cal pro went down to 232 for the first infusion at 6 weeks.  But the next infusion (which is the first one after the increased dose AND 6 weeks) was 452.  

Things that make you say hmmm? 

She feels fine.  GI didn't send an email or note on the lab posting.  She has a Telehealth visit on 7/31 so we will hear then if he is the least bit concerned about this cal pro.


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## Pilgrim

I'd love to see how calpro changes on my kids every day for a month! Bet you feel the same...in theory anyway. Sometimes I rely oncalpro and sometimes mistrust it. Interested to hear what GI says about T's result.


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## my little penguin

Neither cal pro is ideal 
Crohns patients should have a cal pro of 50 or less 
That is the goal 
Above 50 means inflammatory process is still going on
And possible damage 
Numbers closer to 1000 are a bad flare 
We all know reported symptoms don’t mean the inside is still good 

please bring this up with the Gi
When were last scopes and imaging ??


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## crohnsinct

Yeah, everything I read about cal pro says >250 means subject to flare in next 6 months.  

When we first met this guy he said he aims for under 100. Then as T crept up he kept redrawing the line...around 100...under 150...under 200.  

I was getting antsy to say the least and really glad he acted back in May but honestly, dose increase and shortening the interval and she still almost doubled.  Seems like a conversation starter to me. 

Her last scope was January 2017...yeah, I know, I know....too long to go between scopes...this guy marches to the beat of a different drummer.  He did say last time, "if I were to scope you, I would find inflammation".  So he REALLY relies on cal pro.  Just don't understand his lack of action.  WE will see what he says on the 31st.


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## my little penguin

Scopes tell you amount of inflammation/extent of area affected and damage all things that can’t be known by just fecal cal 
Add in for some folks over 200 inflammation is horrid when scoping 
Other that number isn’t until 500 

so push(I know  ...) for scopes


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## Maya142

Hmmm I'd be worried about that trend - going up while on an increased dose and at a shorter interval. That's definitely not in the right direction!
I know T's Crohn's is mild compared to O's but given O's disease severity, I'm confused about his treatment strategy - clearly there is severe disease in the family, and I'd want to do everything possible to make sure she does not end up in O's shoes! Plus, even if you remove O from the situation, her FCP has been elevated for months and it did not respond well to the increased dose.

I know he isn't keen on scopes but what about checking her levels and checking for antibodies? She's been on Remicade a long time.

I would definitely ask about all this at her appt.


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## crohnsinct

T had her telehealth with GI today. He doesn't think SCD is helping her.  He wants to act on the elevated calpro. 

He gave her two choices. Clobber the beast with EEN, steroids or methotrexate OR increase Remicade to 10mg/kg Q4. 

She chose EEN.

He said it would be "about" 6 weeks.  We will pull a fecal calprotectin in a month to see if it worked.  Another appointment in 2-3 months.  

She asked about an NG tube and he said it might be hard to get her training on the tube given the pandemic and skeletal crew etc..  He is going to ask the nurses.  The fellow suggested that specialty pharmacy might be able to provide the equipment and training. 

Maybe this will calm things to the point that Remicade can maintain.  Maybe once she is off and starts back to food her numbers go back up.  Ahhhh the suspense of it all.   

He didn't mention getting the formula through specialty pharmacy.  Our old GI ordered everything for us but this guy didn't mention anything about that.  Hmm.  Looks like I have some phone calls to make on Monday.


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## my little penguin

Our formula never came from the specialty pharmacy or any pharmacy -insurance would not cover it that way 
Ours only covers it through the durable equipment supplier as infusion supplies 
Just saying


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## crohnsinct

T got her tube today.  They set aside 2 hours for training and for her to practice.  They helped cut the tape and then explained the procedure and had her do it first time.  She put it right in.  10 seconds flat.  A little gagging after but overall not bad.  We were done in 20 minutes. 

She is going to have to keep it in because they say our insurance only approved 5 tubes for a month.  They also sent us 10FR which is huge!  The nurse who came to explain the pump saw the tube and gasped.  She said they should have at least given her an 8FR and went out and asked the nurse to give her one so when she changes the tube at the one week mark she can try that one instead.  If she likes that one better the nurse from home pharmacy will order that size for her and also ask insurance to approve more so she can take the tube out if she wants to go somewhere with friends but really who is going anywhere these days?  She does have senior sunrise tomorrow (First day of school the seniors hike up a hill and watch the sunrise...they do that the last day of school also).  She would really like to go to that without the tube but doesn't want to waste the 8FR because then on Sunday she has to take the tube out for softball and would have to go back to the 10fr.   

So now T doesn't even want to drink her 2 cans daily that she is supposed to drink.  She wants everything to go through the tube and I can't say I blame her.  So I am about to let her get 3 cans through the tube from 12-6.  Then at 6 I will load her nightly 12 hour feed and tomorrow she can do 2 cans during the day and then go to 6 overnight.


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## pdx

Good for T! That's awesome that she could insert the tube on her own so quickly. You could probably get more tubes free (except for shipping costs) through the Oley Foundation, if insurance doesn't approve more. We offered a bunch for donation when E finished her EEN, and no one ever requested them because the Foundation had so many tubes on offer at that time.


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## crohnsinct

Oh wow!  Thanks for the tip PDX....I just might try that given these 10's are so big.  Poor T said her throat hurts now.  I told her that will settle down after a day or so.  Just wish she could take the darned tub out during the day and give her throat a rest.


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## pdx

OK--I've been thinking about this more, and I'm pretty sure that we also got just 5 ng-tubes a month, even when E was only using them at night, because they could be reused for a week. Does this sound familiar to anyone else? I think we rinsed it well after use, put it in the fridge, and then rinsed it well again before reinserting that night.


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## crohnsinct

Oh wow!  That would be great to know....if it could be simply rinsed and reinserted the next night.  T didn't enjoy having it indwelling all day and would much prefer taking it out during the day, having a rest and then just doing an overnight feed.  If anyone else could comment that would be great.  I did ask the nurses about this and they said they have never seen someone do this but to be fair, most of their tube kids are a lot younger and have other issues so they likely do 24/day feeds.


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## my little penguin

Check with the okey foundation and tubie foundation 
You need fresh tubes to insert due to infection risk


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## pdx

I agree with MLP--check with the groups she suggested. The guidelines may have changed since E used a tube.


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## Tesscorm

We also reused ours. Rinsed it well every morning and night. I can’t remember if I used any soap??

but i agree w MLP...  less infection risk if you can get more supply.


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## Maya142

We reused our tube - we had a new tube every week, but not every night. We rinsed and washed her tube every morning. M inserted it every night.

10Fr is huge! M was on 6 Fr for her NG tube and 8Fr for her NJ tube. She hated the 8Fr, though she eventually got used to it. She had no issues with the 6Fr after the first week - she was sore for about a week.

Way to go T for agreeing to try a tube. It's a hard step and she is a trooper!! I'm so proud of her!


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## Maya142

How is T doing with the tube feeds CIC? Did they get you all the supplies - including a backpack? Much easier that dragging an IV pole around.

The Oley Foundation and Feeding Tube Awareness are two organizations that have a LOT of resources about tubes and tube feeding. Feeding Tube Awareness is a pediatric organization and they used to have a facebook page where they answered questions etc. it was really helpful - I can't remember what our issue was, but I did contact them and I remember them going out of their way to help.


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## crohnsinct

Lordy!  Did I really never update this thread?  T finished up her EEN nicely.  The GI weirdly let her go back to eating whatever she wanted.  Calpro bounced around in the 200's we didn't change anything and what do you know this last time it was 117!  

So skipping along nicely and looking forward to graduation and college.  

Just thought I would put this out there as another view of Crohns as sometimes we only see the bad.


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## Jo-mom

That's great.  What is her remicade dosage these days?  I know it has jumped back and forth.


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## crohnsinct

I think 7.5 every 6 weeks....hear that new parents?!  You can actually get to a place where you aren't really even sure what your kid's dose is because they are doing so well you don't have to keep such close tabs on that stuff!  

I actually know it is every 6 weeks....at least that much I know.  And I am relatively sure we aren't at 10mg/kg again because I distinctly remember talking about it and er choosing to do EEN rather than increasing Remicade.


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## Maya142

So glad to hear she is doing well. That's exactly how my daughter felt when she started using an NG tube - she never wanted to drink formula again. 

I can't believe she's a senior! Wow! I feel like she just started high school.


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## crohnsinct

Well T's calpro crept back up to 279 and since she has small bowel disease the GI and fellow are asking her to retest in two weeks and if over 150 we have to change something.  They asked her to do EEN again and she agreed but they said she could do only 4 weeks this time because she is a quick responder.  They said that she might be one of those patients who every now and then just needs an EEN tune up.  I don't agree with this approach.  I think it is pointless to allow inflammation to keep creeping in and then do EEN and after it is over just eat normal and watch the inflammation grow again.  What the point in that?  But GI just keeps saying the only other choice is Remicade every 4 weeks or add Budesonide and you don't want that....who says? 

She isn't symptomatic.  Lost a little weight but leveled off and can't be too sure that isn't associated with softball.  Was nauseous ad had some pain a few nights but that also could be anything.  She is fine now.  

See you all in two weeks.


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## pdx

Have you checked Remicade levels recently? I'd want to do that before changing or adding anything, even EEN. What's her current dose? Isn't it 5 or 7.5 mg/kg every 6 weeks? She could go up to 10 mg/kg every 6 weeks before needing to jump to every 4 weeks.


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## crohnsinct

Good point PDX! This guy doesn't tend to check levels, IDK why.  He also doesn't scope often enough in my opinion.  

He did happen to say that he sees better response with shorter intervals than with increased dosage so he always tries that first.  

I will ask about checking levels.


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## Jbungie

Wow, seem kinda crazy that he's not checking her Remicade levels.


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## Maya142

I  agree -  I don't think putting her on EEN every other month or 2 or 3  is sustainable. She may be willing to do it one or two more times, but it's tough!! Even with a tube. 

Plus you're right that all the inflammation and healing -that whole cycle leads to scar tissue, based on what our adult GI has said.

I think the bigger issue is that there is chronic inflammation and we have no idea what her Remi level is, even on 7.5 mg/kg. She may need 10 mg/kg. We don't know where inflammation, since she hasn't had scopes for a while. And we don't really know how much Remicade is controlling the Crohn's or what kind of damage there is, especially since she has small bowel disease which can be sneaky.



> But GI just keeps saying the only other choice is Remicade every 4 weeks or add Budesonide and you don't want that....who says?


T is having infusions every 6 weeks, right? And your GI prefers to up frequency, then dose? So why is 4 weeks so bad - surely it's less inconvenient that not having food for 4-6 weeks. She has home infusions right now, right? I guess I don't get why it's such a big deal.

And Budesonide - he's happy to give it to O and then tells T "you don't want that" - what does that mean??!


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## crohnsinct

@Maya142   My point exactly with this guy.  He says all these things are to be avoided but then has her sister on all of it and more.  

She is on 7.5mg/kg Q6.  

Her mid cycle calpro came back at 89!  So she can avoid EEN for now.  But bless her heart, the smarty pants has been listening all these years.  She says she wants another cal pro at infusion because what if she is burning through the Remicade at the end and that is what increases her cal pro.  At that point just move infusions to 5 weeks or 4.  

She is going to ask GI if she can get another calpro.  

I will keep you posted.


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## crohnsinct

Been a while.  Thought I would update.  

The April 29th calpro was right back up at 249. No change in therapy.  
Something happened and she missed getting one in June.  
Insurance made us switch to every 8 weeks. Gi increased dose to 10mg/kg.  
August 12 calpro 540.  Gi decided since she was starting college not to torture her in her first semester with EEN and just do a repeat test in two weeks.  Well of course it was 50 because she had her infusion on 8/12.  
Next infusion no calpro because she had just had one 2 weeks prior. 
December 9th calpro 573 - no comment from GI
February 2 calpro 840 - one week went by no comment from GI.  I wrote to him and basically told him to wake up.  He greedier infusion schedule needs to be reduced.  He wrote an appeal for every 4 weeks.  We are waiting to see what insurance decides.  

She feels o.k..  She says maybe a little increase in abdominal pain.  Her H&H tanked, her CRP is at max of 10 and she is usually consistently under 1, 3 at the highest.  No clue on weight.


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## Maya142

Poor kiddo - I hope insurance will approve every 4 weeks SOON. She clearly has demonstrated she needs it!! And way to go CIC for getting her GI to wake up...you would think with what her sister has gone through, he'd be extra vigilant with T .


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## Pangolin

Yikes. I doubt this is going to get under control with a dose increase. What would be the plan next?


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## crohnsinct

Hmmm why do you say that?  The only reason I worry is if she was running down to zero on her levels and building antibodies.  But every 6 weeks was working until insurance screwed us up so I am really hoping that going back down to every 4 will recapture response.  

IDK about his plan but our plan is to transfer her care when she gets home from school.  She is tired of the kiddie hospital and would like adult care but she is also peeved that he didn't catch this sooner and mad at his treatment of her sister.  We will transfer her care to either a hospital by her school or the "other" major hospital by us.  We didn't like their pediatric IBD center but I have heard good things about their adult care.


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## my little penguin

Agree - we have seen spacing of dosing have a big impact on Ds 
Insurance did similar and spaced out his Stelara to “prove” he would get sicker 
He did 
Doc appealed 
Took a few months at the higher frequency (which he was in before for years prior to proving ) and he was fine again 

crohnsinct good luck with insurance
I know ours was a battle


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## Pangolin

I don't think it's going to work because she's already had a significant dose increase, and yet her calprotectin has gone up substantially since. Not good! I wonder how the inflammation is looking on the inside.


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## crohnsinct

@Pangolin actually not really a dose increase because they moved her out from every 6 or 7 (I forget) to every 10 weeks.  That's why he had to increase dose to 10mg but maybe you are right…Q7 at 7.5,g/kg is likely equivalent to Q8 at 10mg/kg.  And even at Q7 her fecal cal was creeping up. It's been 7 years so sounds about right.  I am guessing Humira would be next but maybe Stelara given the complete lack of any colon involvement. But last scope was early 2017 so who knows what is going on in there these days.


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## Jo-mom

So she hasn't been on 10mg/kg 4 weeks yet which actually might make all the difference.  I don't think Remicade is a lost cause yet.  I think the dose increase will make the difference.


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## Maya142

Her last scope was in 2017? That's quite a while ago. Does her current GI have any plans for scoping when she is home next? Though an adult GI will probably want to scope her when you switch since it's been close to 5 years. I'm glad she is switching. 

In terms of increasing frequency, it has made a huge difference to my daughter for Remicade, Humira, Cimzia, Simponi...basically every biologic she has been on. For Remicade, she's always needed it between every 4-6 weeks.

I hope it works for her, but it's good to know she has other options like Humira and Stelara. There is also another IL-23 inhibitor that has been filed for approval for Crohn's and should be approved some time later this year. It's supposed to be magic for psoriasis as well as IBD. T does have psoriasis, right? Or am I getting confused?


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## Catherine

Sorry to say but the calprotectin level is very high for only small bowel involvement.  You need a urgent MRE.


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## crohnsinct

Hmm. You have a point @Catherine   her H&H dropped quite a bit also and her/ was never lie so maybe she is bleeding a bit also.  Ugh!


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## Maya142

Any news on insurance approving every 4 weeks? 
I vote for scopes with the MRE...it's very possible she has developed colonic disease in the last 4-5 years.


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## crohnsinct

They submitted for approval for every 4 weeks and received it but she has to switch to bio similar Inflectra.  Our current infusion provider doesn't provide Inflectra so she has to switch over to another agency and the new agency needs to submit for their own approval so it will likely be 6 weeks by the time this all gets straightened out.


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## crohnsinct

T had her first 4 week infusion of Inflectra this week (insurance issues) and got calpro done right before. 158!  Her last infusion 4 weeks prior was the increase to 10mg/kg.  So just the dose increase did that!  I am hoping that as we consistently infuse every 4 weeks that calpro will continue to fall. But that was quite a decrease and I am happy.  

She comes home soon so hopefully no hiccups moving her infusion to a local center.


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## crohnsinct

Well T's calpro continued to climb through the summer reaching as high as 500's.  But without any intervention went down to 150.  However it is now consistently elevated above 300 and most recently 500.  She is at 10mg/kg Q4 and her Remicade level is 22 with no antibodies.  It looks like she has lost response.  She is scheduled for scope right before Christmas.  Her GI proposed a switch to Stelara pending scope results but she would rather try another course of EEN to see if knocking down the inflammation helps keep Remicade on board longer.  

She wants to do this rather than abandon Remicade because she saw what her sister went through and she doesn't want to risk no response to Stelar in the spring as that is her softball season.  

Isn't it great when they are legally adults and can make decisions themselves?  I am actually pretty impressed with her maturity and her involvement with her disease process and management.  

Not so sure EEN through Christmas and the break and going back to college will still be appealing come December so maybe we have a drug switch coming our way.


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## Maya142

Glad she is getting involved! But even if she does manage EEN and it gets inflammation down temporarily, will Remicade keep it that way? Honestly, considering her levels are high and she has no antibodies, to me it seems like she needs to switch biologics. She has psoriasis too, right? So Stelara might be a good choice.


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## Farmwife

I'm sorry to hear about all the ups and downs still.  
Grace tried Stelara and that might be a good fit for your kiddo.
I can't believe how old the kids are getting.


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## crohnsinct

Oh guys….adult kids are so much fun.  Especially when they sort of know what they are talking about.  

So now it seems little miss T's softball team is going to South Africa on a trip of a lifetime next January (2024).  She wants to go but some of the vaccines are live.  So she has a plan.  She knows that her scopes will show inflammation.  Her calpro is still in the 500 range, CRP is elevated for her,  tanking H&H etc.  So now she says if the GI asks her to switch biologics she will agree BUT she wants to do EEN for 8 or so weeks so Remicade can wash out and then get her live vaccines and then start Stelara.  

Logically sounds like a plan not so sure medically.  Plus even logistic will prove difficult because she is only home for 3 weeks for winter break so where would she get her Stelara infusion in 8 weeks?  

This kid is a crack up.


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## Maya142

Hmm…we had to delay meds for 3 months when M got the chicken pox vaccine, if I’m remembering correctly. 
Doesn’t T get infusions at school anyway (well, I mean home infusions in her dorm)? Could Stelara be done that way?


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## crohnsinct

Maya142 said:


> Hmm…we had to delay meds for 3 months when M got the chicken pox vaccine, if I’m remembering correctly.
> Doesn’t T get infusions at school anyway (well, I mean home infusions in her dorm)? Could Stelara be done that way?


Good point @Maya142 I forgot about home infusions.  We will have to see if her provider does Stelara.  I know we had trouble when switching from Remicade to Entyvio for O and since Stelara is just loading dose infusion IDK if any of the companies bother with it.


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## crohnsinct

Scope done yesterday.  TI had ulcers, Exudate and friability.  Sounds like mild disease but on Remicade Q4 and 10mg/kg that wasn’t great news.  Her colon was pristine so disease hasn’t spread. We are not going to do an MRI to look at duodenum because the findings already mean a change in treatment so we are going to wait until it is time to assess the new treatment.  

Endoscopist (who knows us rather well) presented the pics and said but we have to wait for biopsies which is another way to say “GI is on vacation so you can discuss in January”.

Her appointment is 1/6. Meanwhile I will try to find a travel doc who can tell us exactly which vaccines she will need to go to South Africa so she can present her plan to GI.

Poor kid doesn’t want to drop Remicade because she is traumatized from watching her sister drop a drug sorta working only to find nothing else to work.


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## Maya142

Remind her that everyone is different! My older daughter worries a lot - about her younger sister and the severity of her disease (she feels very guilty that hers is not as bad) but also about developing severe disease herself. Hers is moderate currently. She has switched biologics multiple times, very successfully. She has done well on combinations that just weren't enough for M - such as Simponi and MTX, Cosentyx + Arava, Taltz + MTX. I know it's really hard, but she should try not to compare.

And she should also remember that there was a long time O was on Remicade where her disease was out of control and not one, but TWO GIs didn't do anything. And so it got worse and worse. That's exactly what we don't want to happen to T!! She should switch before it's really severe. I remember O was filling the toilet with blood and was being told her symptoms were due to stress  - absolutely ridiculous.

She is maxed out on Remicade, so I do think Stelara makes sense, especially since she has psoriasis too. If she can't have the infusion as a home infusion, could she come home for a weekend for it?

As for vaccines, I believe Typhoid is not a live vaccine - my girls have had it. Not sure what else she'd need.


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