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


 
06-30-2013, 03:22 PM   #241
CarolinAlaska
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Hey Carol, doesn't Camp Oasis have to follow the med protocol as set by the parents?
Giving the meds is the easy part. Getting a Crohn's child to drink 48 oz of a formula mixture with no appetite and a busy schedule is a different issue. We have a hard time making it happen at home. She was the only one having to drink the formula and no one else in her cabin even did nightly feedings with NG tube or any kind of enteral nutrition. Frankly, looking at the pics, she seemed to be the only child who was underweight in her cabin! I was really hoping that she would see that she wasn't alone out there in doing the enteral nutrition thing, but she says no one else at camp was doing it, that she could see... Of course I'm sure there were others, but it wasn't obvious enough that she could see it, and none of the other girls were encouraging or said things like, "oh I had to do that once..." sigh.
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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.
07-01-2013, 06:26 AM   #242
DustyKat
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Thanks for the update Carol.

It is so good to hear that Jaedyn had a fab time at camp! But I do hear your concerns too.

Good luck with the appointment and I hope your lass is continuing to hold her own.

Dusty. xxx
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07-02-2013, 03:27 PM   #243
CarolinAlaska
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Jaedyn and I had a talk about her formula. She needed some motivation to do it. Right now if she drinks her 6 cans a day, she gets a dollar. If she doesn't, she gives up her right to electronics the next day (TV, computer, Wii). It is really a double motivator, and doesn't cost me much. It was her plan and so far she failed the first day, but met it yesterday... This could cost me $365/year, but that would be so worth it for $365 days less of nagging!
07-02-2013, 03:35 PM   #244
Clash
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The lack of nutritional feeds may be due to the fact that the US tends to utilize Pred more?

It is always had to get C to get in supplemental drinks into him and we a whole system of bribes/takeaways. Just wanted to send some hugs your way!!
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Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
07-02-2013, 03:39 PM   #245
crohnsinct
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Remind me Carolin...is she just supplementing at this point? Does she have a problem with milk? Just wondering as for just simple nutrition and weight gain there are a bunch of other options out there...but...if it is for trying to knock down inflammation maybe not so much.

If just for nutrients and weight gain, do you know a good registered dietician? If not maybe find someone with experience with patients who have anorexia nervosa. They are well adept at helping kids pack in a lot of good nutrition and some pretty yummy sneaky ways. We were seeing one of those for O and O was her easy patient as she liked to eat!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
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
07-02-2013, 03:40 PM   #246
Jmrogers4
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Same here we are still having problems with adherence but I can see how much better he is, how much more energy he has when he does have a couple a day at this point
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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
07-02-2013, 04:12 PM   #247
my little penguin
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No issues here yet - but he is still only nine . I am sure its a matter of time.
I can say the vsl#3 taste far worse than the peptamen according to DS which I didn't think was possible .
Is she eating as well ?
Once DS was back on foods we were able to cutback to two to three a day so less of an issue .
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08-21-2013, 12:51 AM   #248
CarolinAlaska
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The good news: Jaedyn reached her 20 lb weight gain a few weeks ago! She weighed 90 lbs even!

The bad news: Jaedyn got strep throat again and was on 10 days of antibiotics then caught a bad cold that turned into a sinus infection for which she was put on a second antibiotic after 6 days of fever... Now she's lost 6 of the above 20 lbs and won't drink her formulas any more. She's finally starting to eat again (had 4 meatballs and some cooked cabbage at supper!). Yesterday we started school but she had to stop to lay down due to belly pain, and she's had orange stools with diarrhea since starting the second antibiotic - hoping this is a side effect of the antibiotic! I guess my rose colored glasses have been broken, and we haven't beaten this thing yet!
08-21-2013, 01:24 AM   #249
Jane and Nick
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I hope this is just a bump in the road and Jaedyn will feel well again soon. It's like riding a roller coaster having a IBD member in the family. You are doing and have done such a wonderful job, keep your chin up and this to will pass.
Sending hugs to both of you.
Ps. Great news about the weight gain, fingers crossed it will come back plus more !
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08-21-2013, 03:42 AM   #250
upsetmom
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..I hope she gets better soon.
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Dx Premature Ovarian Failure 2014



08-21-2013, 07:45 AM   #251
Tesscorm
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Sorry she's not feeling better! But, great news on the weight gain! Hopefully, once she's feeling better, she'll get that weight back!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
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
08-21-2013, 10:53 AM   #252
Jmrogers4
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Sorry she is not feeling well, hopefully it is just a small bump in the road and she can quickly get back those pounds she lost. Awesome on the weight gain though!
08-21-2013, 11:15 AM   #253
Mehita
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How much longer will she be on the antibiotics? And she's on 6MP, right?

Like the others said, maybe it's just a bump in the road.
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
08-22-2013, 10:02 AM   #254
CarolinAlaska
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Thanks everyone. She has lost 6 lbs so far, but seems to be on the mend. Her appetite is starting to improve and she drank 3 ensure plus formulas made into "Orange Julius" type drinks yesterday in addition to food. She was doing 6 drinks previously, but at least she is drinking it again . She felt good enough to start soccer yesterday too!
08-22-2013, 10:17 AM   #255
kimmidwife
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Glad to hear she is doing a little better. Is she on a probiotic? I don't remember. If she's not make sure to get her on one. It will definitely help with some of those antibiotic side effects.
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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.
08-23-2013, 04:40 AM   #256
DustyKat
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So good to hear about the weight gain!

I am sorry about the setbacks though......and sending loads of luck and well wishes that the turnaround continues for your lass, bless her.

Onwards and Upwards!

Dusty. xxx
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