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05-02-2012, 10:29 PM   #31
Catherine
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Please wish you daughter all the best for the weekend. 400 Free is a hard event even when the kids are feeling at there best.

We are heading into the winter short course. Maybe think about going for post Crohn's PB, then the pre ones.

Most of Sarah's PB are over 12 months old.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

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

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
05-03-2012, 06:19 AM   #32
crohnsinct
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Post Crohn's PB's! Duh! Why didn't I think of that

The Crohn's came on suddenly in January but I have to assume since she didn't best any times last summer it was probably starting to affect her back then.

I will see if her coach can change her seed times to last year's times. Thanks for the suggestion!

She had her first shake and likes it and seems pretty psyched for the day
05-03-2012, 08:41 AM   #33
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That's great she's managing the shakes - hope the enthusiasm carries on. It is definately worth it - my son managed an extra 6 months without any meds and probably would have kept going had he not developed the fistula/abcess.
Hope it works well for her!
05-03-2012, 09:56 AM   #34
crohnsinct
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Just heard from Liv. 10:30 and had 3rd shake. Says it is going fine but she feels hungry

I guess it could be just the thought of food and not being able to have it huh?

I told her to drink her water and I packed an extra shake so told her to go ahead and have an extra if she wants. Probably against some sort of rules but I am an Italian mamma and I'm hungry are the worst words I could hear.
05-03-2012, 10:37 AM   #35
imaboveitall
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Cinct, I cannot imagine how an extra shake would hurt.
V was on 10-12 8oz cans at the start, plus food. Around 3000+ cals per 24hrs.
P.S I am Italian too
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VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
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05-03-2012, 11:26 AM   #36
Tesscorm
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Yep... can't see how an extra would hurt??? Portuguese here but Italian husband! Awful to hear your kids are hungry and you can't feed them!!! By the way, Stephen was also on 3000 per night.
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May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
05-03-2012, 01:13 PM   #37
Twiggy930
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My son also consumed extra formula in the beginning when he was hungry. I was told there is no upper limit of formula consumption, but I'm guessing this would change if massive weight gain occurred. I don't think too many calories are something they tend to worry about in this population. I found that he self regulated the extra intake, meaning that as his weight went up he became less hungry and wanted fewer extra shakes. His weight went up to his pre-Crohn's weight and has plateaued there.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
05-03-2012, 01:17 PM   #38
crohnsinct
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Which reminds me of a question I had for doc...each can is 240 calories...times 6 would make a total of 1440 calories. But when on food they wanted her eating 2400 calories. Why so few on the shakes? Is it because the nutrition is more perfectly well rounded with the shakes so you don't need as much?

I think doc didn't ask for more cans because she has already gained 11 pounds so now weight gain isn't the compelling reason for trying EN as opposed to getting inflammation etc under control. But really 5 foot tall and 77 pounds, I still can't bring her to mom mom's house without hanging my head in shame
05-03-2012, 01:45 PM   #39
Tesscorm
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I don't know how they determine how many calories from formula, from food, etc. I know when Stephen went on maintenance, he continued to have 1500 cal/night (5 nights/wk) from formula plus a regular diet. They gave us no guidance as to calories, etc. except dietitien did say that most people, after ingesting formula all night, usually skip breakfast and may end up having smaller lunches. When Stephen gained 15-20 lbs over the first six weeks of maintenance, he was worried that this would continue but the dietitien just said that we'd look at it again in a few more weeks (unless it truly became a problem). Well, he pretty much stabilized there (which is at 155-160lbs, 5'10") which is a healthy (and still slim) weight. He doesn't have breakfast, however, I've found that often he ends up having a 'third' meal anyway at 11pm or later, just before beginning the formula. I don't know how it works but he seems to have found his own balance between food and formula. (Julie did mention once that Stephen's formula had a lower fat content than that which Violet used - Stephen's is called Tolerex.)
05-03-2012, 03:27 PM   #40
imaboveitall
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Cinct, I hope this doesn't vibe "wrong", I swear I don't mean to seem Miss Know-It-All. Please know it's meant in a love and concern and PTSD from when V was starving, kind of way.

O sounds to me like she needs far more calories than she's getting. You aren't trying to maintain her weight, as V and Stephen are now doing, you are trying to advance her weight, growth and development from a place of deficit.
For that to happen a kid needs (this is direct from The Saint) 2500-3000cals/day and pref more.

V's gain on formula was exceptional; so much so that The Saint sent her case to be reviewed by one of the top IBD researchers in the world, an Ernest Seidman in Canada. She gained 40lbs in FOUR MONTHS and grew 2.5in in that same time frame. That was 20lbs of weight she'd lost plus 20 more.
She's now 138lbs and 63.5in.

She was on feeds 24/7 for 30 days and 16hr/day for three months. Gradually lowered to the 1500/night she's on now.

The Saint said she was one of the most dramatic responses he'd ever seen in his practice and attributes it to us doing as he said and making sure she got at least 3000cals/day for 30 days, something he said many will simply not do.

O is active and needs at least 3000cals I would think, if not more, to both gain and reduce inflammation. Also the more broken down formulas are more fully absorbed. She may not absorb all the cals from Boost.
05-03-2012, 03:46 PM   #41
Tesscorm
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FWIW and just as an add-on to Julie's post and this may apply to Olivia...

During Stephen's initial 6 weeks (formula only), he gained 6 lbs IMMEDIATELY (one week??) then the gain tapered off quickly and by the end of the six weeks, he'd probably only gained another 4-6 lbs. I asked the GI and dietitien about this but they were happy as long as he was gaining and not losing. But, they both agreed that the 3000 cal/night did not take into account his activity level (in addition to playing on two hockey teams, he also did 2.5 hours of phys.ed. per day). Both said they were comfortable as things were progressing but would revisit either the calorie intake or activity output if the gains changed to losses. Once he added back regular food, he gained the additional 20 lbs in six weeks BUT this also coincided with school ending (and the 2.5 hrs/day of phys.ed.).

So, given Olivia's activities, the 2500-3000 cal that the Saint recommends may not be based on her calorie output.
05-03-2012, 05:56 PM   #42
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In full swimming training Sarah eats like a teenage boy and does not gain weight.

Maybe you need a dietian to work out calorie intake for your daughter average level. 6 shakes doesn't seem enough.
05-03-2012, 06:49 PM   #43
crohnsinct
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Hi all - thanks so much for the input. I KNOW that it is all meant with love and NEVER preachy know it all stuff. That is why I keep coming here. I respect and admire you all and value your input just as much as the docs. I love you guys and the fact that you saved my daughter from any more medicine than was necessary.

That said, I agree on the calorie intake. I was chatting at practice tonight and everyone agreed that their perfectly normal healthy kids should be eating 3000 a day and that for Liv to catch up and get healthy 1,600 just doesn't seem right.

I do remember him bringing up the NG tube and saying that some kids can't handle the shakes and that they hook up when they get home from school and unhook in the a.m. O said that wasn't an option as she doesn't get home until 9 most nights and then he said maybe a half and half option might be best for her. At the time, I was thinking that he meant still 6-8 shakes so 3-4 during the day and the rest of her nutrition at night. I am now thinking maybe he meant 6-8 shakes during the day and some NG feeds at night. She ended up only being able to get down almost 7 and I don't expect much more after church tonight.

I sent them an e-mail to let them know how it went and will let you all know what they say. She is petrified of the tube. I have had her read everyone's posts about how great their kids have done with it. Going to look for a video of insertion to show her. And someone offered a skype session with their daughter (will have to look that up) and may take them up on that.

Thank-you thank-you thank-you! You guys are the best!
05-03-2012, 08:08 PM   #44
Tesscorm
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Just FYI, at full dose, Stephen was ingesting 2000 ml/night at a rate of 200-250 ml/hour - this took 8-10 hours/night. He usually started at 9-10pm and was done in time to get ready for school. When it happened that he had a later hockey game, (bad mom) I let him skip first period class.


05-03-2012, 09:57 PM   #45
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When my son first started inserting the NG tube he used a tiny amount of xylocaine gel on the tip of the tube to numb his nostril. He would dip the tip of the tube in the xylocaine and sort of snort it up is nose to numb the passage way a bit. He did this for about 1 week and then we ran out of the xylocaine and he realized that he didn't need it anymore. Given how easy it was for him to switch to doing it without the xylocaine I have wondered if its effect was more psychological than physical, but hey whatever works!

I highly recommend the tube and so does my son! I can make a video if you need one.
05-03-2012, 10:01 PM   #46
my little penguin
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Ds drank 1750 cal a day or 7 -8 cans of peptamen jr.
BUt he was only 7 at the time.
05-03-2012, 10:13 PM   #47
Twiggy930
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With the "extra" shakes that my son drank at the beginning he was getting about 2700 cal a day. He is now down to about 2200 cal a day. He is 10.
05-04-2012, 07:41 AM   #48
imaboveitall
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So glad I didn't offend, I get all emotional picturing skinny kids from my PTSD from when V was skeletal.

Cinct, I TOO was so freaked by the idea of them "traumatizing" her by NG tube insertion I had them sedate her w/Versed for the initial one.
She had it indwelling for 3mo because we both thought removing/inserting would be SUCH a BIG DEAL and I didn't want her "tortured" (yes I used that word then) every night!
The Saint meanwhile that whole 3mo was encouraging her to do it as he said he had plenty of (mostly CF but a few IBD) kiddy pts, some far younger (youngest he said was 7) doing that every night and going to school with no one needing to know.

Cinct, when she did it for the first time I felt SO DUMB for all the hoopla.
It was PAINLESS, she didn't even gag. I was like, OMG... for this I had them sedate her??

If O ends up with it she can Skype live w/V and see how it takes maybe ...8 seconds?
I so hope this helps... Much love.
05-04-2012, 09:00 AM   #49
crohnsinct
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Thanks Julie - I had them sedate her for that?! LMAO...I may take you up on your skype offer.

Tesscorm - did you get Stephan's imaging results yet? Perhaps you posted elsewhere and I missed it. Just wondering how things went.
05-04-2012, 09:26 AM   #50
Tesscorm
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Hi Crohnsinct,

He goes May 10. I'm kinda in that 'limbo land' that Dusty described on another thread, where one minute I'm thinking there is something wrong and, the next, I'm sure I'm just being paranoid! He's having quite a few of the signs he had before diagnosis...

- on/off fever for a couple days, then gone
- waking up a couple of nights because he feels hot but no fever and no night sweats (but he did feel flushed to my touch and eyes were glassy)
- looser BMs coinciding with the fever
- falling asleep after school a few days last week but not since then
- his March test showed Sed rate up but CRP steady (actually a little lower) and HGB up
- pain near his TI but only when he does long distance runs in phys.ed.
- and then, last night, says he's having an epsom bath because his back hurts! (but he's still having some issues since he separated his shoulder in November and physio says he's compensating and causing other tightness/pain)

But, other than a couple of days earlier this week when he cranky, not feeling well and was, himself, a bit worried, he's been fine; appetite is normal, hasn't lost weight, as much energy as usual, not pale (and he always looks pale!)...

So... I don't know... he's had times before when he's 'off' for a few days and then just gets better (perhaps not even crohns-related). But, as he's going to be at the hospital anyway, I spoke with GI nurse and she agreed that we should run bloodwork at the same time...

I just wanna stay in that nice, sunny dream world!
05-04-2012, 08:56 PM   #51
crohnsinct
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Tesscorm: O.K. I won't wake you from your nice dream. Keep us posted next week.

O swam 23 seconds slow and looked like she was swimming in mud! She was fine with it...I was very sad. Like I have said before, if it weren't for her sports she looks great. Some days I wish she would just quit them so I can stay in my dream world and not have the effects of the disease stare me down.

Two days down on shakes only! I can't wait for the inflammation to go down, her iron, weight and energy to go up. I am really counting on this. After tonight, I almost wanted to go to the doctor and shake him down for a Prednisone fix!

Oh yeah and heard from the nutritionist at docs office. She said the nurse forwarded my email. She is working on pre authorization for the shakes and will handle note to school. So since I haven't heard from nurse about coming in for tube training etc I am assuming that he is good with the 6-8 shakes a day...gosh I hope that is enough. Can't believe I have to wait until June 6th for the next blood test.
05-04-2012, 10:00 PM   #52
Tesscorm
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Crohnsinct,

The sports really take a lot out of them... you really do need to be at peak performance and it certainly shows when you're not. But, she will get back to her peak!! We truly went through that last year with Stephen's hockey, just before his diagnosis in May. If you disregard this year's separated shoulder and injured knee , without question, he played his best hockey ever this year!

If she responds well to the shakes, perhaps you can keep her on them at a 'maintenance' dosage for as long as she'll drink them??? (With food, of course!! ) Just as a supplement to counteract the energy she burns with swimming.

If she loses any weight, I would get back to the nutritionist or nurse and reconfirm the quantity... make sure that they are aware of her activities and what impact it has on her calorie intake.

I hope the rest of the weekend goes well for her!
05-05-2012, 12:09 AM   #53
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So glad I didn't offend, I get all emotional picturing skinny kids from my PTSD from when V was skeletal.

Cinct, I TOO was so freaked by the idea of them "traumatizing" her by NG tube insertion I had them sedate her w/Versed for the initial one.
She had it indwelling for 3mo because we both thought removing/inserting would be SUCH a BIG DEAL and I didn't want her "tortured" (yes I used that word then) every night!
The Saint meanwhile that whole 3mo was encouraging her to do it as he said he had plenty of (mostly CF but a few IBD) kiddy pts, some far younger (youngest he said was 7) doing that every night and going to school with no one needing to know.

Cinct, when she did it for the first time I felt SO DUMB for all the hoopla.
It was PAINLESS, she didn't even gag. I was like, OMG... for this I had them sedate her??

If O ends up with it she can Skype live w/V and see how it takes maybe ...8 seconds?
I so hope this helps... Much love.
Interested to see a pic of the tube you are using...we almost reintroduced it while inpatient last time. Ours was an 8FR (If I remember correctly) but it was really tough on her-she cried for a week about her sore throat, plus her nose bled quite a bit following insertion. I am guessing indwelling is different than one you remove nightly (ours was weighted and the tip was fairly large.)
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05-05-2012, 06:46 AM   #54
imaboveitall
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Hey Angie!
It is an 8FR. NOT weighted. Same size one we've used all four years even though she is over twice the weight and 8.5in taller in height!
It's very small compared to her giant nostril
But Izzi had to have been half the size of V when she tried it so maybe too big for her baby sized nose
05-05-2012, 10:03 AM   #55
crohnsinct
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Tess - Thanks. I am holding on to your Stephan's story...One week back to hockey two days and three weeks 100% hockey and ball...I don't want to wish time away but I can't wait for the three week mark.

I will also keep an eye on her weight and call if it starts dropping too much.
05-05-2012, 01:07 PM   #56
Tesscorm
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Angie, Julie - Stephen's is only a 6Fr (assuming 6 is smaller than 8 in this measurement).

Crohnsinct - I so hope it works for Olivia. I was honestly amazed at how quickly Stephen rebounded! And this was while he still had 2+ hours of phys.ed. every day! I did have a meeting with all the teachers so their demands of him may have been lower but still...! My husband and I were the ones trying to keep him back from some of the games but, his GI said, let him do what he feels capable of, so we did and just stressed at every game!
05-05-2012, 02:20 PM   #57
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My husband and I were the ones trying to keep him back from some of the games but, his GI said, let him do what he feels capable of, so we did and just stressed at every game!
Ah good then I am not alone and a freak of nature!
05-05-2012, 02:34 PM   #58
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Not likely!
05-05-2012, 04:20 PM   #59
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Now Tess, I know Stephen is your baby but a 6Fr really is used for babies!

Dusty.
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05-05-2012, 05:47 PM   #60
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LMAO!! that's what they gave us at the hospital!?!? What did I know? Lol. If it were now... I'd be on here in a second... Asking what everyone thot, cud the smaller size cause flow errors?, wud it be more difficult to clean inside, cud bacteria build? wud a larger size allow for speedier dlvy reducing the impact on Stephens lifestyle?... OMG, it wudve taken me 3 days to decide on a 6fr or 8fr! Lol
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