• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Heard from Doc today

Could never hate you!

That is how we treated it when it was EEN. But now Doc said right in front of her she didn't need to drink them anymore so I have a hard time convincing her. She will do whatever he says but he actually is quite pleased with the weighht so I don't even think he would ask for shakes to up weight. And that is another thing.....oh now you have me good and annoyed...remember when we were doing EN how I obsessed over not enough calories and not the right formula. He stood by his 6 shakes a day (BTW she actually had closer to 10 a day) and never once mentioned the more broken down formulas AND when I asked he said it wasn't necessary for her. Oh and saw your post about scans, imaging right after scopes...yeah we didn't get those either so who knows if this disease is even in her small bowel.

O.K. I am calm now. I will email his nurse tomorrow and ask if they think uping intake (food and/or shakes) would help with fatigue. I just don't get it. She dropped biking over the summer, stopped running after hurricane...so if activity is so reduced why tired? But still it isn't awful...just not herself.

Go ahead Muppet...have at it!
 
P.S. her BMI is 14.9. Sounds close to 18 to me but I really have no clue what it takes to add a few points to BMI. They did tell me 2nd percentile.
 

my little penguin

Moderator
Staff member
What???
They never did any scans --- at all???
No ct or mre ..
DS has had three since last year and two scopes.
Granted he was a mystery but still
He had the first scope dx and then boom ct right away.

Both formulas can work but if she is tired then maybe small bowel and peptide takes less energy for the body to use it and works even if there is damage so a win win.
Most US Gi are not up to date on the formula differences or even uses in crohn's
Our suggested boost since he doesn't like to have parents come back complaining little Suzy won't drink it and he would rather something get in even if its not the best thing kwim .
Hope it picks up for her soon
 
It might be a protocol thing at that particular GI clinic. Sarah has never had any scans of her GI tract either. Scopes only. Of course, her diagnosis is still officially UC, I just don't buy it.
 
Well this is the same doc who told me he wasn't terribly concerned about wheter it was UC or Crohns because he would treat them the same...unless of course further down the line surfery was being discussed. Anyway, I am sure he took biopsies but never asked him if they confirmed Crohns as he was pretty definite based on appearance that it was Crohns.

Anyway, given his above approach I pretty much figure that is why no scans. It is Crohns and I am jumping to Remicade...no need to put her through more testing because it won't change course of treatment.

When he mentions scopes to confirm remission I will ask about small bowel imaging. In April I will ask about biopsies and why they never looked at small bowel. I was pretty much thrown into this inpatient so wasn't smart enough to question hom when he said the small boel looked good...yeah he was only talking the first little bit.

She is looking rather good today. Woke up without a fight and pretty energetic. She skipped swim last night so maybe that did it...or the last day of school before vacation.
 

Catherine

Moderator
Its good she is gaining some weight. How much heigh has O added? As this may have also slowed the weight gain.

This maybe silly question but how much food is O eating? Is she eating 3 meals and 3 snackes a day?

Also note our sports dietian doesnot believe fruit on its own can be considered a snack as it too low in calories for a low weight swimmer.

Sample: snack, apple and small yohurt.

The formula we have given for calories, is to work out required number calories for a normal swimmer of same age, height, weight (you need to use her goal weigh which would be bmi of 17-18?) plus up to 30% for active crohn's.

You would up the calories over a number of weeks.
 
cinct,
I feel like crying, sorry, PTSD from V being cachectic. :heart:

What MLP said. And more:
she needs more cals.
The doc is an idiot.
He had her on EEN SIX Boost per day?!? SIX?!?
She was being barely kept alive on that amt of cals, sorry. Let alone being given enough to MAKE UP for extreme deficit/underdevelopment/delayed puberty.
If it were my kid:
NG tube/pump feeds at night of at least 1500 but more like 2500 cals of peptide or amino acid based formula for 30 days and then reassess.
She would be given no choice.
Main point here: IT CANNOT HURT. CANNOT HURT and MAY (and I suspect shall) HELP.
Giving her serious drugs is one thing and I too am about to do that; we do that and give them no choice.
But you are hesitant to force her to do a tx that has ZERO DANGER?
Makes no sense to me.

Her sm bowel may look like Beirut as V's does. remission? You have no idea without imaging sm bowel WHAT is going on in there. She may have malabsorption due to sm bowel inflammation.

Please read my tone behind this as: worried, sad, PTSD and firm in belief that I am right about this, NOT mean, OK? :kiss:
 
Hmm I missed the part where she's in the 2nd percentile for body weight. That, I wouldn't sit idle on. :(

Sorry cinct, I was hoping you could get a rest from this stuff to deal with your other stuff, but you've gotta be on top of this one.
 
Catherine: Thanks. I did look up on USA swimming once and plugged in her workout and the necessary calories etc. She does need a lot and I know when we were eating clean she wasn't necessarily get what is needed because fruit and veggies just don't cut it. Enter bagels and pasta. Funny...she just had a travel meet and we pay for the bus, hotel, meals and snacks. The team has a person who buys all the snacks. After the weekend the coach told me next year they are charging extra for O because she eats like a line backer! And before dx when I was concerned about her and talking to her old coach he said, "believe me no one is aying you starve this girl....she eats enough to feed an army"

I haven't entered her new workouts in USA Swimming. Thanks for the reminder. I will do that tonight.

Imaboveitall: I lnow you are speaking from a place of concern not judgement. But how do I get the doc to say ng tube when he won't even say shakes. Also, he said 6 shakes a day she actually had about 10! As for small bowel imaging...well either I will have to get second opinion for that or just ask him about that next appointment.

Everyone: But she is gaining weight and a lot of height. So she is making progress. 20 pounds and over 4 inches. And I am watching her like a hawk.
 
Last edited:
That's good that she is gaining height and weight! Pity she can't shake the tiredness. I have to say, there is no way Andrew would ever drink Modulen ever, ever again :wink:, so I don't blame her for not wanting to.
 
Hey, you know your O the best!!!
She's blessed to have a mom like you! (I'm heavily medicated which is why the nice words)

:dance:If your happy with it all and she is growing and eating like a linebacker, good for her.:dance:
Tell her to enjoy it because:D the older you get the more it's like, "I eat like a rabbit and still weigh to much.":voodoo:
 
Intake and absorption are two different things.
She may be eating a ton and absorbing just a fraction of macro- and micronutrients.
The doc is an imbecile if he has a kid that skinny and now fatigued despite her scaling back on activites and he isn't thinking nutritional deficit.
Most pedi GI docs are so USED to IBD kids being skinny and having delayed puberty that unless a kid is actively LOSING weight they are OK with the presentation as they see it as to be expected with IBD.

She may not be starving, I am not suggesting she is; but she does NOT sound like she is at the best nutritionally sound place as evidenced by her size and delayed puberty.

That the doc isn't suggesting imaging and wondering if her sm bowel mayn't be involved reinforces my belief that he is an imbecile.
 
Yeah you have a point Julie and I know someone who would agree with you bout our doc. The imaging of the small bowel is the thing I am most tinterested in. Going to let some things settle here over the next week and see about maybe a second opinion in Boston or Philly (but Philly would mean more frequent visits to the outlaws so Boston it is).
 

Catherine

Moderator
Is O bmi increasing at all? Sarah has gone from 14.4 to 20 in a 12 month period. But she has stopped growing. She still eats a lot but not as much as 2 year ago when we were tryng to get her to gain weight.

A second opinion is great idea. Remember muscle is heavy than fat. So times reduce exercise results in weighloss as they not as hungry so they eat less.

Maybe O disease is sill active?
 

my little penguin

Moderator
Staff member
Agree with the second opinion-
Just a little background why.
DS was eating close to 2400 calories a day pre dx
Yet not gaining and sometimes losing
Very tired .
He even was on boost 3 times a day in the beginning would start to gain but the minute we moved to 2 a day he would lose it slowly all over again .
By the time of dx in sept the three boost a day would let him even gain any more .
He was at the 25% for weight. Dropping from the 75% the year before .

His toe nails on his feet have clubbing ( not fingers) from excessive malnutrition .
His nutritional labs were fine and he was still above FTT levels ( which is below the 7% percentile BTW.)

My point being according to the numbers he should have been fine but the fatigue and toe nails told a different story for DS .


If she has always been on the low curve than that may be her curve .
 
Yes. O was never even on the charts and now she is 2nd percentile. She went into the hospital weighing 65 pounds at 12 years old and now weighs 83 pounds at 13. She gained almost 20% of her body weight in the last year.

Also, I don't buy BMI as a strict standard. My husband is very big boned and was very muscular. At a certain weight everyone was thinking he was seriously ill because he looked emaciated yet his BMI was still in the borderline overweight to obese category. I think you have to look at bone structure, muscle and all.

But yes, no matter how you look at it she is thin I will give you that.

I am such a dork! It just occured to me. I am seeing fatigue with the drop of track and worrying BUT she also moved up a practice group in September and is now doing more yardage and longer practices tougher coach etc...maybe her fatigue is simply that the coach has upped the anty!

Her doc didn't seem to think inflammation was at play.

Will still stay on top of nutrition and rest!
 
BMI isn't a great metric but 83 pounds at 13 still sounds absolutely tiny.

I have a pretty hard time believing bleeding without inflammation *somewhere*.
 
MLP: really? FTT is below 7th percentile? Why then do they say 5% - 85% is healthy on the govt website. Also, darn ped never saw anything wrong. I cling to that whenever I feel guilty for not catching this sooner...well ped didn't think anything was wrong either.
 

my little penguin

Moderator
Staff member
Let me find it later when I have a full keyboard .
One of my irl friends kid goes to an endo and they stated the below 7.
Will update
 
CIC it looks like from your pic you don't weight much more than O!! Genetics do play a role too, C has father that was barely over 120(6"0") at graduation and even now all his weight is in his gut, a mom that graduated weighing 103 and barely makes 120 now at 5'7" and a sister that is 5'7" 3/4 inches and hasn't hit 120 yet. So C is never going to be a bruiser.
 
Last edited:
When my mom married my dad at 23 she was 113lbs and is 5'11.:eek:
When she divorced him years latter she was at a 160 and is still mad at him!:yfaint:
 

my little penguin

Moderator
Staff member
What clash said- if she is following her curve which becomes apparent at age 2 then she is fine but if her weight flat lined due to Ibd or dropped over 2 lines ( ie 75 to 25th) and has not gone back to her pre diagnosis curve ( her norm) then is when you have to watch.
Getting to the big computer soon for the below 7 bit
 

Catherine

Moderator
My previous post on Sarah is missing leading on her weight gain.

After reading MLP Sarah only had a nett weight gain of 3kgs.

Jan 2011 approx 56-57 kg
Jan 2012 43 kg
Dec 2012 approx 60kg

O weight is moving in the right direction.
 

my little penguin

Moderator
Staff member
Although specific anthropometric criteria to define failure to thrive vary, all describe children with inadequate or worsening growth over time. The most common definition is weight less than the third to fifth percentile for age on more than one occasion or weight measurements that fall 2 major percentile lines using the standard growth charts of the National Center for Health Statistics (NCHS).
from:

http://emedicine.medscape.com/article/985007-overview

aslo read pages 25 - 34 Nutritional growth retardation and when they really get concerned.
especially page 33
http://books.google.com/books?id=l7U55V9lT_IC&pg=PA32&lpg=PA32&dq=children+percentile+weight+crohn's&source=bl&ots=ZshqDRANYe&sig=UXU001u7F_4Ncwc6AZ7eZc51HaQ&hl=en&sa=X&ei=qx_VUNqLIu7h0wHA44GYDg&ved=0CGIQ6AEwCDgU#v=onepage&q=children percentile weight crohn's&f=false

read pages 30 -34regarding weight and IBD and BMI etc.

It won't let me quote it,:ymad:

https://docs.google.com/viewer?a=v&q=cache:MLANrN0VFsgJ:https://www.drfalk.co.uk/index.php/download_file/-/1555+https://www.drfalk.co.uk/index.php/download_file/-/1555&hl=en&gl=au&pid=bl&srcid=ADGEESiugnNci5FqFS7egKknPK0Faxvc869zUQeAUJ29XydVnlo6239rRdqjaTx9q8Nmv8FUkLynEJdh7-HOAQcYkfbOQql_-Zab142-la7Pit3TmmnuhsP9aJaD14i_s1zw2f2yF7Lk&sig=AHIEtbQax8F8A4JdXATNDJ2xZG5afV_UKg&pli=1
 

my little penguin

Moderator
Staff member
Am J Gastroenterol. 2010 Aug;105(8):1893-900. doi: 10.1038/ajg.2010.20. Epub 2010 Feb 9.
Nutritional status and growth in pediatric Crohn's disease: a population-based study.
Vasseur F, Gower-Rousseau C, Vernier-Massouille G, Dupas JL, Merle V, Merlin B, Lerebours E, Savoye G, Salomez JL, Cortot A, Colombel JF, Turck D.
Source
Pôle de Santé Publique, Parc Eurasanté, University Hospital, Université de Lille 2 EA2694, Lille Cedex, France.
Abstract
OBJECTIVES:
Growth retardation and malnutrition are major features of pediatric Crohn's disease (CD). We examined nutritional and growth parameters from diagnosis to maximal follow-up in a population-based pediatric cohort, and we determined predictive factors.
METHODS:
A total of 261 patients (156 boys, 105 girls) with onset of CD before the age of 17 were identified from 1988 to 2004 through the EPIMAD registry (Registre des Maladies Inflammatoires Chroniques de l'Intestin) in northern France. Median age at diagnosis was 13 years (11.2-15.4) and median follow-up was 73 months (46-114). Z-scores of height/age, weight/age, and body mass index (BMI)/age were determined. Multivariate stepwise regression analysis identified predictive factors for malnutrition and growth retardation at maximal follow-up.
RESULTS:
At diagnosis, 25 children (9.5%) showed height less than -2 s.d., 70 (27%) weight less than -2 s.d., and 84 (32%) BMI less than -2 s.d. At maximal follow-up, growth retardation was present in 18 children (6.9%), whereas 40 (15%) had malnutrition. Nutritional status was more severely impaired in children with stricturing disease. Growth and nutritional retardation at diagnosis, young age, male gender, and extraintestinal manifestations at diagnosis were indicators of poor prognosis. A significant compensation was observed for weight and BMI in both genders and for height in girls. No treatment was associated with height, weight, or BMI at maximal follow-up.
CONCLUSIONS:
In our pediatric population-based study, growth retardation and severe malnutrition were still present at maximal follow-up in 6.9 and 15% of CD children, respectively. Young boys with substantial inflammatory manifestations of CD have a higher risk of subsequent growth failure, especially when growth retardation is present at diagnosis.
from:
http://www.ncbi.nlm.nih.gov/pubmed/20145606


why they see underweight poor growth as the norm:ybatty:
 

my little penguin

Moderator
Staff member
of course can't fine the 7%- I know I read it somewhere- just can't remember where-
ALso know it was associated with crohn's.

maybe another day.
 
First off mlp that fact the your brain can store that much info is aw-inspiring!
Trust me if you read 7% somewhere I believe it!
 
my little penguin;557145 It won't let me quote it said:
They're on to you MLP!

Don't worry we won't let them shut you down. We NEED you. Mary get the vice! FW get the rolling pin!

Thanks for all the info. Will read it as soon as I get my family out of the house.
 
Last edited:

DustyKat

Super Moderator
Sorry I am late to this crohnsinct. :ghug: And I have to admit I have skimmed a little over the posts to catch up. :redface: So if I am repeating what has already been said...sorry!

I can well understand the sentiment of treatment being essentially the same regardless of the disease but I do think it is imperative to establish if there is small bowel disease present and to what extent as it plays such a critical role in the absorption of nutrients.

Along with the Iron studies have B12, Folate, Vit D, Magnesium, POH4, Calcium and Zinc. I hope all is AOK with them but if not it will give you ammunition to pursue further testing.

Dusty. xxx
 
At one point I agreed with the sentiment to delay imaging the small bowel if the result wouldn't directly affect treatment plans. I have since changed my tune, as my OCD has taken over and I want to know everything.
FWIW, Izz's GI has one child on Remicade every two weeks, citing a new study that shows moderate efficiacy. He has two refractory kids that he is having a hard time getting under control.
 
Hi everyone...boat docked so I jumped on the computer...Tesscorm says Hi and don't worry I am taking good care of Stephen:ycool::ycool:

O had her infusion yesterday and are you ready? She has gained almost 2 1/2 pounds in two weeks! She is now at 15 something BMI and has moved into the 4th percentile...all in two weeks!

The fatigue seems a lot better also. I am guessing it could be because I think I figured out a rational explaination for it and I just feel better or she is adjusting to the harder group and getting more rest this holiday or the new veggie/fruit smoothies and hemp seeds I am giving her are really helping with her nutrition (maybe they even helped with weight gain...couldn't be all the holiday eating could it?).

No blood since last infusion.

Now the yucky part...I wasn't in the room when they pulled her blood....daddy was and well you know our deal there...anyway when I got back I asked if they pulled the extra tests and they said no just the usual. So I won't have the extra tests we were hoping to get but she is looking great and not complaining so I am good.

Life is getting in the way of my forum obsession again so excuse my absences but know that not a day goes by that I am not thinking of you all and praying for you all.

Oh they are boarding the boat again...gotta go!
 
I'm so happy to hear the great update.:hug:

As far as the boat.....
It time to wake up and take your medicine!:rof:
 

DustyKat

Super Moderator
So fab to hear all is going well with O!!! I am so happy for you all and I hope more than anything that it keeps on keeping on. :):):)

Onwards and Upwards! :heart:
Dusty. xxx
 
So glad things are going well - enjoy! Not been on here as much either, I had a cough so hubbie was sleeping in the office - no late nights on the forum for me :shifty:. Wishing I was on that ship too!! :D
 
So my update from July is on success stories but it is more of the same.

Had O's check up with GI today and he is over the moon with how well she is doing. She grew since July and gained 5 pounds (I didn't tell him the old weights were based on first thing a.m. and this one after a full day of eating...I don't think that mattered much). She is 50th percentile for height and almost 10th for weight. He is officially not bothering her about her weight anymore. Her inflammation markers are perfect as are her iron and vit d levels.

She has now done two infusions at 6 weeks and I asked if we could move to 7. He said not without checking Remi levels. Well since she is adding two hours of track 5 days a week to her 6 day a week swim schedule I thought it would be pointless because she will probably come up low with all that exercise helping to burn through the Remi. He agreed.

He wants a dexa scan as her last one at dx was borderline. So Jan/Feb when we go in for infusion she will kill two birds with one stone.

Oh yeah and the IBD center we go to has a symposium in the beginning of November, for parents and patients. He asked O and I to be on a panel of patients and parents to speak and field questions. She did great.

Scopes will be scheduled for summer so she doesn't miss school.

I think that covers it! Really hoping and praying that this forum is chuck full of updates like this real soon!

Oh we dropped Prevacid! YAY!

Psoriasis still pissing me off and she has a new trick...blacking out. She had an EKG and all was perfect so they are telling us just normal syncope and just keep hydrated.
 
Just wanted to share our latest update. Been waiting for awhile because we had scopes scheduled but for some reason they kept getting postponed...oh yeah...because they kept getting n the way of O's busy athletic life.

Finally had scopes today (first since dx 3 years ago) and no sign of inflammation anywhere. Yes, we still have to wait for the biopsies to come back but I fully expect those to be fine also.

O has been very well. She continues to run on the track team every day, never misses school because of Crohn's issues, is on the Headmaster's List, and is now down to swimming 3-4 days a week. Mostly to preserve her running times but also for weight and menstrual issues.

She has gained 39 pounds and 7 1/2". BMI is 16.7 which puts her in the 6th percentile so we will keep working on that but since she is doing so well the GI isn't really concerned and I was even worse than her as a kid and didn't have Crohn's so it looks like it is just in the genes.

We have extended Remicade out to every 7 weeks and she is down to 6mg/kg. Still taking the mtx for her psoriatic arthritis and the psoriasis which to look at her you wouldn't be able to tell. She is a flaking mess but will take that any day to have the GI success she is having.

We pray every day that all of the families here will soon blow up the site with the same kind of good news. Hugs to you all! Thanks for always being there! :ghug:

P.S. going to cross post on success stories because I think it is important that people checking there see lots of good news so you can ignore it there:thumleft:
 
O had her regularly scheduled follow up with the GI today. During the appointment the GI mentioned wanting to get a Remi levels test. I asked why and he said there was some inflammation at her last scope.

Flag on the play! No one told me about inflammation! Must have been pretty minor for them to wait three months to even discuss it but still!

So he wants to pull a levels test to see where she is and if she is low and that is the reason for the inflammation. At some point, he decided to pull a fecal calprotectin first and then make adjustments to her dose and schedule for the next infusion and then pull a levels test at the next one.

Not worried. This is one of the nice things about Remicade...we can adjust away! More than likely our aggressive move up to 7 weeks and down to 6mg/kg was just a bit much. She is still asymptomatic so that is good.
 

Maya142

Moderator
Staff member
Glad she's still feeling well. Hope Remicade can be adjusted and keeps working like magic!
 
I personally hate "just a little inflamed" yes the docs have seen worse but complete mucosal healing is the new goal

Hope tweaking remicade gives you good answers
 
Good to hear she is doing well. Hopefully a little tweak in schedule will take care of the mild inflammation
 

CarolinAlaska

Holding It Together
Your girl has some inflammation, yet is asymptomatic. My girl has no inflammation, but is bent over in pain at least once a week... I hope the tweaking helps.
 
Carol I can say we were in your position from dec last year till April
Finally pulled all food and have bern adding things back slowly
It was surprising the foods that caused abdominal cramping with DS
But without those foids in his diet and staying on formula while we trial one food at a time has made it much easier to figure out .
 
yep I hate the whole "a little inflammation" statement too! I hope the tweaks put her on the right track!
 
O.K. Pretty sure the committee isn't going to be happy with this.

O's fcp came back 147 but nurse said that is great considering our lab's normal is 162.9 (Quest). Now I get that for Quest that is their normal but in my opinion fcp is fcp. It isn't like they are testing something different or using different units etc. So if all the studies say less than 50 is normal and all the other labs say less than 50 then I want less than 50! I am greedy that way.

So while it is not very high (the benefit of having another daughter with an fcp of 700) I am left wondering if this 147 is the reason for the microscopic colonic inflammation. I am also wondering if this might be new inflammation elsewhere. She has never had small bowel imaging so does this 147 mean inflammation might be showing elsewhere in the small bowel?

Oh wait! Silly me! 147 is normal!

She has infusion tomorrow so I will be curious to see if her dose is adjusted or if they want o pull a levels test.
 
Yeah by Quest mine was 152 or 157, which I didn't like either. But my scopes were clear so I was sent on my way because "hey 152(or 7) is normal.

I am a firm believer in some fcp but that is because it is a great indicator for C. So I specifically ask for labcorp for C just because I refuse to have the 167 NRR debate! Ha!

I'm not sure about possible inflammation further up. And even though I say how great it is for C we did have that fc that was 48 a year before his surgery but the surgeon stated emphatically that C surgically removed area had in his opinion been there since dx)or technically before). And a month before biopsies came back showing inflammatio(scopes looked pristine) he had an fcp of 59.

If it was C(and because of his age) I would tell him the number, give him the info about fcp, then my opinion but tell him further testing was up to him. I might possibly refuse also to cook supper until he decided on further testing but hey that's just me! LOL!

Honestly, I'd do as you suggested and be looking for how things may change at next infusion and ponder a levels test.
 

Maya142

Moderator
Staff member
I would ask for a Remicade levels test. I think it's perfectly reasonable - inflammation is inflammation and you're right, most studies go by the 50 bench mark. If you can adjust her dose and get rid of the microscopic inflammation, then why not?

Fwiw I have started to do what Clash does - just use the labcorp test so we don't run into this problem!
 
I would also be concerned with a number over 50, especially in light of the microscopic inflammation. Good luck tomorrow!
 
Haha. I love this committee!

I used quest because they are on my insurance plan but if my insurance doesn't cover the test screw it! I will go lab iep from now on!

Pilgrim: absolutely feel like we can control it. Just need to know what we are dealing with and adjust accordingly. My big worry would be the constant inflammation healing cycle and risk of scar tissue. However since her scopes visually looked pristine I am not concerned about the colon. Would like some small bowel imaging so I could rest at night though.
 
Here is the issue
Mre are pricey
So if she isn't having symptoms
Her scopes look good visually
Lab work looks good and fcp is "normal " per the lab it was run at
Then it would be harder for the doc to justify the test to the insurance

Not saying that I wouldn't push ( I am a pushy person -ask all of Ds docs ;) )
Just saying things get trickier when everything is normal
 
Aaaah The wise chickie (notice I didn't say old) weighs in. That makes sense given the schpeel I got about using steroids before moving to biologics for T.

If he pulls a Remicade level and/or makes dosing adjustments I am good with waiting and pulling another fcp in 8-12 weeks, which btw hasn't been mentioned. Let's see what they say and do tomorrow.

I really am quite calm about it all but just want to make sure we aren't resting on our laurels. It took us quite a while to get here and I want to stay.
 

Catherine

Moderator
I don't think it actually the number on the faecal calprotectin as such that matters but the trend.

Our Gi would like the fc to be normal which is under 50.
 
Thanks Catherine. They haven't mentioned pulling another test because I guess they are fine with the number. Even if they did pull another test, I wouldn't expect it to be trending up. With the microscopic inflammation found in biopsies in March and now this 147 in late June, I am starting to suspect this is where she sits. I don't think it goes much higher because she feels well, continues to gain and is on Remicade and methotrexate. I more suspect that we are controlling 95% of the disease which is really great but we all know full mucosal healing with no microscopic inflammation is the goal. I know it is possible because many of us here have gotten there.

Can't wait to see what happens at infusion.
 
No levels test, no increase in dose, no tightening of schedule....no wine! :ytongue:

Guess I will just wait until we see him in September. Anyone have the ball vice?
 
Hmmm, we've always used Quest for FC, never had one below 50. First one was 90, with scopes at the time showing healthy pink tissue. Next were 295 and then 397 a couple months later which coincided with symptoms and MRE showing inflammation. Last one done a couple of weeks ago was 68 which we did because of recent weight loss, so since it's not under 50 should I be worried that maybe there is microscopic inflammation and that is why the weight loss?
Now I need a glass of wine...
 
hmm. Well since it is close to 50 but there is weight loss I would be inclined to wait and retest in 8-12 weeks. O has microscopic inflammation but is gaining loads of weight. Funny thing is I am actually a tad concerned about how much and how fast. Go figure!

So yeah with the weight gain and lack of any symptoms I can wait until we see him in September.
 
Can you take FCal sample in then?
Teehee! You have been hanging around us too long! Learning our impatient tactics.
Yeah I can. I can probably get him to order one earlier if I want also. Easy to wait as I have bigger fish to fry with t and o is feeling well. Will also see if anything changes with the next infusion. I guess it is totally possible her microscopic inflammation subsided and quest knows what they are talking about.
 
That's funny! I was talking to nurse at infusion center today about this same topic. She works in a few different departments and she lovingly said that IBD parents are the craziest. So I explained why:

- symptoms could be in joints, eyes, skin, head...you pick...anywhere and everywhere not just intestines so we never quite know what is IBD and what is some other miscellaneous thing
- asymptomatic kids end up deathly ill in a matter of weeks
- all symptoms could be explained by many other things so am I being paranoid or observant
- no clear cut treatment plan
-no cure stuck with the disease
-long road to dx and often many misdx's
- lots of waiting and watching with no answers
- drugs stop working with no warning

Tell me you wouldn't be a tad bit insane. She was floored. She said, Wow! Next symposium we have a presentation entitled, "this is what it is like to be an IBD parent"

So yeah...I am impatient and crazy and I wear it proud!
 

Maya142

Moderator
Staff member
You could wait and watch VERY carefully. And then maybe get FC repeated before you see her doctor next.
Of course, to be able to do that you deserve LOTS of wine!
 
CIC - I hope I have permission to reproduce your list at my next craziest (this mother having already started a crazy letter campaign at hospital - personal reputation not so good)

I hope she was serious about the symposium!
 
And I posted it here on o's thread and it was for t!!! Anyone looking for the paper can look on t's thread. Anyone looking for my sanity I think I left it an hour back on the highway!
 
Update: Seems microscopic inflammation in March scope and a fecal cal of 150 in June means 2 1/2 months later things go down hill.

O had had loose bm's (not D but teetering on the edge), blood, loss of weight, loss of appetite and extreme fatigue.

Doc thought it was run of the mill exhaustion but pull FC just in case. FC didn't come back in time for her last infusion on Monday so no levels test. FC is 460.

Doc's plan...up her mtx to 12.5 once a week. He hasn't mentioned changing Remi schedule or dose.

Don't ask me his reasoning.

Her appointment is next Tuesday so I can add this to the list of questions I have on both girls.
 
Glad that she has an appt soon, so you can talk more to her doctor. Has she been feeling better since her infusion, or is she still having symptoms?
 
Still fatigued, still mush, still not eating, continues to lose weight. IDK about blood. I haven't looked and she won't report.

As luck would have it she took her mtx on Wednesday night and we got the increase instructions on Thursday so we have to wait until next week to increase her dose.

Plus without the levels test we have to wait until her next infusion (she is on 7 week schedule) to run that.

I think we just got too aggressive with moving out the interval and decreasing the dose.
 

my little penguin

Moderator
Staff member
They actually recommends DS get his tested at four weeks out since all the papers had numbers for that specific time frame
Good luck
 
Had o's appointment today. She is only down 2 pounds now. All blood work normal. Gi says a 460 fc wouldn't cause crohns fatigue without anemia. He is not concerned. Says likely some inflammation but not much.

Maybe normal teen fatigue.

Not testing levels. Not tweaking dose or schedule. Just the increase to 12.5 mtx weekly.

Pull fc in a few more months.

He did agree to run thyroid and b12 at next infusion in 6 weeks.

Have at it.
 
Top