Crohn's Disease Forum » Parents of Kids with IBD » Heard from Doc today


 
12-20-2012, 11:04 PM   #301
crohnsinct
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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!
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Daughter T dx 1/2/15 at age 11
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12-20-2012, 11:06 PM   #302
crohnsinct
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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.
12-20-2012, 11:08 PM   #303
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I've got nothing to say that I haven't said emphatically already.
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12-20-2012, 11:12 PM   #304
my little penguin
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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
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12-20-2012, 11:14 PM   #305
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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.
12-20-2012, 11:16 PM   #306
my little penguin
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https://itunes.apple.com/us/app/chil...345677022?mt=8

App for bmi

DS is back to 60th percentile
From 25% for weight .
2% would scare me...
But he was mostly off the charts for weight and height before so..,
Never small
12-21-2012, 07:14 AM   #307
crohnsinct
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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.
12-21-2012, 07:18 AM   #308
Catherine
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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.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

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Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
12-21-2012, 08:04 AM   #309
imaboveitall
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cinct,
I feel like crying, sorry, PTSD from V being cachectic.

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?
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12-21-2012, 08:23 AM   #310
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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.
12-21-2012, 05:29 PM   #311
crohnsinct
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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 by crohnsinct; 12-21-2012 at 06:24 PM.
12-21-2012, 05:33 PM   #312
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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 , so I don't blame her for not wanting to.
12-21-2012, 05:38 PM   #313
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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)

If your happy with it all and she is growing and eating like a linebacker, good for her.
Tell her to enjoy it because the older you get the more it's like, "I eat like a rabbit and still weigh to much."
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12-21-2012, 06:01 PM   #314
imaboveitall
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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.
12-21-2012, 06:28 PM   #315
crohnsinct
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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).
12-21-2012, 06:47 PM   #316
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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?
12-21-2012, 07:26 PM   #317
my little penguin
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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 .
12-21-2012, 07:27 PM   #318
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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!
12-21-2012, 07:29 PM   #319
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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*.
12-21-2012, 07:41 PM   #320
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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.
12-21-2012, 07:53 PM   #321
my little penguin
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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
12-21-2012, 07:54 PM   #322
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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.
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Last edited by Clash; 12-21-2012 at 10:09 PM.
12-21-2012, 08:40 PM   #323
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When my mom married my dad at 23 she was 113lbs and is 5'11.
When she divorced him years latter she was at a 160 and is still mad at him!
12-21-2012, 09:09 PM   #324
my little penguin
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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
12-21-2012, 09:55 PM   #325
Catherine
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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.
12-21-2012, 09:58 PM   #326
my little penguin
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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=l7U...'s&f=false

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

It won't let me quote it,

https://docs.google.com/viewer?a=v&q...5afV_UKg&pli=1
12-21-2012, 10:05 PM   #327
my little penguin
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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
12-21-2012, 10:11 PM   #328
my little penguin
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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.
12-22-2012, 02:25 AM   #329
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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!
12-22-2012, 08:45 AM   #330
crohnsinct
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[QUOTE=my little penguin;557145
It won't let me quote it,

[/QUOTE]

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 by crohnsinct; 12-22-2012 at 01:14 PM.
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