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Crohn's Disease Forum » Parents of Kids with IBD » New to Forum, newly diagnosed 13 year old - J's story


 
01-28-2013, 04:36 PM   #61
CarolinAlaska
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I thought this study was interesting. To a large degree because it seems counterintuitive. Patients who knew they were being prayed for got sicker:

http://www.m.webmd.com/heart-disease...y-stirs-debate
Wierd, huh. I've seen studies that proved prayer worked. I don't see how many people were prayed for in each group, but how could anyone be in a group where definitely no one was praying for them. Doesn't everyone have someone in their circle of family or friends who would pray for them?
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
01-28-2013, 04:40 PM   #62
CarolinAlaska
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Hi Erin, how old is your daughter? My 15 yo (not crohn's) is 5'8, but I don't remember what she weighs. It will be interesting to compare how long our two girls take to reach remission on the two different pathways. Mine is not losing weight, but she doesn't have any to lose as she is only 70 lbs.
01-28-2013, 04:58 PM   #63
CarolinAlaska
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Twiggy, things for sharing your son's experience with EEN. I know it will be a challenge, but at this time I think were all ready for something to change. Fortunately her labs are not too bad. Her inflammatory markers are normal right now.

I found out yesterday that my husband took her to McDonald's on Friday. That may have caused her problems. I don't know what they were thinking! Ugh! French fries and milk shake.
01-28-2013, 05:03 PM   #64
Jmrogers4
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I bet she enjoyed them while she was eating them though! I love McDonalds fries, however I don't like how they end up on my hips
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
01-28-2013, 05:05 PM   #65
muppet
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Wierd, huh. I've seen studies that proved prayer worked. I don't see how many people were prayed for in each group, but how could anyone be in a group where definitely no one was praying for them. Doesn't everyone have someone in their circle of family or friends who would pray for them?
No. I can think of one person in my social circle who would, and that's my wife. I know plenty of people for whom prayer is meaningless and would neither pray nor ask to be prayed for.
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01-28-2013, 05:36 PM   #66
Johnnysmom
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Erinsmom,

We choose Prednisone for the same reason. It was like our son couldn't eat anymore. He was starving himself. Once he was on the Prednisone he ate everything and it was so awesome. I was afraid with EN that it would be hard for him to transition back to food. I think it was the right call for us. Hoping your beautiful girl is healthy soon. It was a process for us but our son is doing so much better now. (((((Hugs)))))
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Dx Oct 11 2011 Crohns disease
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01-28-2013, 05:47 PM   #67
muppet
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We're going in 3 weeks to discuss EEN with the Boston folks. Can't wait.
01-28-2013, 06:15 PM   #68
my little penguin
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I can say that although EEN did not completely fix DS .
He still continues EN daily in addition to food. He is staying at the 70% weight fir his age from the 25th at dx. He was initially 75% from age two on.
I highly recommend some form of EN in addition to other meds just to level the playing field on easily absorbed nutrients regardless of disease activity.
Too many kids with crohn's and uc are constantly trying to catch up on weight since flares and just having crohn's /uc increases caloric need.
EN takes care of that so you only have to concentrate on the meds/ infkammation part.

DS is proof with a 20 lbs weight gain after none for over two years and slow weight gain since then .

Polymeric formulas - ensure / boost are whole proteins and take work for the body to absorb- but taste good
Semi- elemental formula - vital jr and peptamen jr are peptide based so only required a few inches of healthy intestines to absorb - still drinkable
Elemental - are amino acid based - easiest to absorb. - most broken down.
Neocate, eo28 splash , elecare - usually require a ng tube for older kids - younger children can tolerate it better orally.

Good luck
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01-28-2013, 06:18 PM   #69
Jmrogers4
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Thanks, I'm writing all these down for our appt.
Carol I'd be interested if you go with EEN or even just to supplement nutrition which one you choose.
01-28-2013, 06:24 PM   #70
muppet
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We definitely don't have any issues putting on weight here, but I do worry about balanced nutrition and consistent hydration.
01-28-2013, 06:26 PM   #71
Jmrogers4
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FYI - Vital Jr. has been renamed to Pediasure Peptide according to the website.
01-28-2013, 06:27 PM   #72
my little penguin
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Just get as many samples as possible to try from the Gi .
Whichever one he drinks - was the rule our Gi went with since we wanted long term.
If its just ng tube then elemental - but that is pricey.

Make sure they put the prescription through a durable medical equipment company.
Most insurance does not cover formula or supplements.

Most do have durable equipment clause and will cover medical infusion supplies ( aka formula).

Good luck
01-28-2013, 07:38 PM   #73
CarolinAlaska
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No. I can think of one person in my social circle who would, and that's my wife. I know plenty of people for whom prayer is meaningless and would neither pray nor ask to be prayed for.
Really? I figured everyone had a granny or auntie or family friend who would pray for them whether they wanted it or not . Shows what I know...
01-28-2013, 09:19 PM   #74
crohnsinct
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OH Muppet: I would totally pray for you! As a matter of fact i DID pray for you when you were in the ER and again when Sarah was impatient. Just call me Auntie Fairfield!

Erinsmom: we did prednisone at dx and it worked wonders. Worked so well that some days we are looking for the prednisone like a druggie looking for a fix!. Problem for us was as we tapered symptoms came back...even though she was also on Remicade (Still have a nice supply in the cupbaord waiting to attack the next flare). So doc said add MTX and we said try EN. EN worked. All this just to say, there is no one right or wrong and like MLP says don't get so tied to one method you won't see when it is time to try others. Bob and weave!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
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Calcium
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Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
01-29-2013, 12:16 AM   #75
CarolinAlaska
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Here's an update: We spoke to the GI and she is in agreement to start EEN as her initial therapy. She is going to work up a plan for her and then call J's pediatrician to have her start her. We may have to go inpatient for the initial set-up. I envision the process taking a couple of days to get insurance prior approval, get all the supplies, etc. I think she will be using Ensure and going on a 16-18 hour a day feeding plan. Nothing by mouth except Ensure and water. We'll see how it looks when she gives us the final plan. I think I will have J be sure and get weighed and measured before we start. She is due for that anyway. Tonight she is going to eat some cookies, and she may have some steak, mac and cheese and potatoes tomorrow before we start, because those are her favorite foods and we don't know when she'll be able to eat solids again - it will be a weeks or months...
01-29-2013, 01:22 AM   #76
Hope345
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Carol,
I wish your daughter the best.
01-29-2013, 03:20 AM   #77
Patricia56
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Sounds like a plan.

Glad your kiddo is on board with it. If she's drinking it (like it sounds) try using covered cups, straw, and stick to the same flavor for at least 3 days before moving on to the next one. Some people like it ice cold but this can cause stomach cramps in some people when it hits the tummy.

Sending healing and hope your way.
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Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
01-29-2013, 06:19 AM   #78
Dexky
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She's the same age as my son so it'll be interesting to see how she handles the total EEN. Good luck Carol! I hope it does wonders!!
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
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01-29-2013, 08:34 AM   #79
crohnsinct
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Carol, I really hope this is your ticket! I remember O's good bye to food pig out. Hilarious combos.

Believe me when she starts feeling better and gaining weight she won't even miss it. O's was 6 weeks exclusive and slow reintro. Did the GI hint at what she was thinking for maintenance? On and off EN as needed? If drugs some need time to build up to therapeutic levels so you may want to start them now so when EN is complete they can take over.

Good Luck!
01-29-2013, 08:46 AM   #80
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Good luck! Glad the doctor is on board with trying EN! It is nice when you find a good doctor that is willing to listen.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
01-29-2013, 10:33 AM   #81
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Carol-

My daugher just turned 14 last month. In August she was 5'6 and 125-130, now she's 5'8" and 104. It's scary how fast it came on, but last night she was definitley eating. I had to stop her from eating her third dessert.

Michele
01-29-2013, 11:37 AM   #82
Jmrogers4
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Wow, there really are quite a few of us just starting these teen years, Jack will be exactly 13.5 on Thursday. These kiddos are amazing with all the regular teen stuff they have to deal with having this on top of it and they so rarely complain. They truly inspire me.
01-29-2013, 11:52 AM   #83
CarolinAlaska
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This is what I know so far: we will be doing NG tube with constant feeding most of the day since she doesn't go to school (16-18 hours/day) using Ensure so that it is the same formula when she takes it orally if she wants to do that too. There will be nothing else except water. I don't know how long she will be doing it yet. I asked about maintenance meds for after and she seemed unprepared for this question. I think perhaps we'll see how it goes and if it works well, may do periodic EN for maintenance?

Jaedyn is 5'3" and 70 lbs which height seems "in the normal range" but she is a child of 6'0" parents and a 7'0" grandfather. Her sister (19 months older) is 5'8". I am hoping she grows taller and reaches at least 5'8" before she's done. I am also hoping for her to be able to be in the normal range for weight... perhaps 50%? Is this asking too much?
01-29-2013, 11:59 AM   #84
muppet
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Wow, there really are quite a few of us just starting these teen years, Jack will be exactly 13.5 on Thursday. These kiddos are amazing with all the regular teen stuff they have to deal with having this on top of it and they so rarely complain. They truly inspire me.
Hmmm... I think my daughter missed the memo on "rarely complain", but for the most part, she's a tough cookie.
01-29-2013, 12:01 PM   #85
Jmrogers4
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Hope she gains and grows. I hear you on the height I'm not very tall but dad is 6'1" and his brother is the same height at 11 and Jack just hit 5'0" in the last few months His brother is growing like a weed and seems to eat every 15 minutes and I think will pass him in height within the next month or so.
Glad you are moving forward with the EN. I have to say I'm a little worried about no maintenance med as I was under the assumption that EN is a start but you need a little help to keep them there. I hope she feels better and starts growing like a flower (we'll leave the weeds to the boys )
01-29-2013, 12:06 PM   #86
Jmrogers4
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Muppet - Oh Jack complains about how I never let him have enough xbox time, computer time. Make him do the dishes, clean his room, shovel snow, mow the lawn and on and on and on.
But rarely complains about taking his meds, or going for tests. The only thing he complains about is having to drink an Ensure as he is leaning over the sink taking a drinking then washing his mouth out with water 3 times for each sip. It's not that bad I've tried them. The only one I thought was awful was the Boost 1.5 as I felt like I was drinking pudding.
01-29-2013, 12:09 PM   #87
my little penguin
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^^^ yeah that
EEN is good to get into remission but and but time while maintenance meds try to work.
Most start with 6-mp or Aza since growth/weight issues put you in the moderate category .
Ask the Gi about maintence drugs since the minute she has a bite of food inflammation tends to start again
01-29-2013, 12:09 PM   #88
muppet
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Muppet - Oh Jack complains about how I never let him have enough xbox time, computer time. Make him do the dishes, clean his room, shovel snow, mow the lawn and on and on and on.
But rarely complains about taking his meds, or going for tests. The only thing he complains about is having to drink an Ensure as he is leaning over the sink taking a drinking then washing his mouth out with water 3 times for each sip. It's not that bad I've tried them. The only one I thought was awful was the Boost 1.5 as I felt like I was drinking pudding.
Ah, OK. Yes, Sarah complains endlessly about chores, lack of time to talk to her internet boyfriend, on and on and on. I still boggle that whining seems to be such an instinctual thing for teens, in that they seem to think it will get them what they want, while it drives us up a wall and makes us want to strangle, not accommodate, them.

LOL @ the ensure melodrama.

OK, so we're on the same page then. Sarah is pretty stoic about hospital visits, doc appointments, tests, etc, but she's definitely not shy about reminding me of her joint pain (regardless of how bad it is at the moment) when there's a chore she'd rather not do, etc.
01-29-2013, 02:52 PM   #89
CarolinAlaska
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Regarding maintenance meds... I think I caught my GI offguard with that question. She isn't used to doing EEN, and I imagine she is doing research now regarding the answer to that. "Jaedyn isn't your typical Crohn's patient," she keeps reminding me. I guess I'll be keeping her on her toes.

For those who are doing/have done EEN by tube feeding... Did you have to go inpatient to get it started? That was one of the GI doc's recommendations...
01-29-2013, 02:55 PM   #90
Farmwife
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Some do and some don't. Her GI had a home health care nurse come to or house to put the n-g tube in. Grace's stays in all the time. Given her young age, it's just easier.
Will she be doing feedings at night? I would take it that way.
You said she's not the typical patient, what did you mean by that?
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Ibd (microscopic)
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dx Erthema Nodosum
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