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02-28-2013, 11:57 AM   #31
emillerstudio
 
Join Date: Feb 2013
Location: Oak Park, Illinois
It's good to read that a normal life is possible, I feel so bad for my 17 year old son that he has not had a real high school experience and had to quit playing soccer. One day at a time and I try not to predict the future too much.
02-28-2013, 02:13 PM   #32
Jenn
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Hesitant to post good news (knock on wood), but we are having great success with Alex on Humira and 6mp. It's been one year now on Humira and 6 months with 6mp and it was the boost he needed to get his protein levels back up. His energy and appetite are great, he's gained a bunch of weight and is growing again. whew, for the moment.
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Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (15mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
02-28-2013, 03:19 PM   #33
Tesscorm
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Great news!!!!
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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
02-28-2013, 04:00 PM   #34
Jmrogers4
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Fantastic News, long may it continue (I always feel like Star Trek when I say that but it is truly what I mean)
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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
02-28-2013, 10:03 PM   #35
upsetmom
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That's so good to hear...
02-28-2013, 10:40 PM   #36
my little penguin
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Woohoo party !!!
Long may it continue
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DS - -Crohn's -Stelara
02-28-2013, 11:23 PM   #37
Twiggy930
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Such fantastic news!!!!
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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.
03-01-2013, 10:51 PM   #38
DustyKat
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Wow! That is so fab Jenn!

I so hope all continues to go well for your boy, bless him.

Dusty. xxx
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Mum of 2 kids with Crohn's.
03-23-2013, 03:29 PM   #39
Twiggy930
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It has been a little over a year since my son's diagnosis and although it took a while (like the better part of a whole year) to get him feeling mostly better he is finally there. This time last year he was ramping up his azathioprine dose, weaning pred, starting EN and just beginning a battle with Crohn's related arthritis, which left him unable to walk without crutches for 3 months. It was not a happy time. One thing he really wanted to do last spring was play lacrosse, something he had never done. At the time I remember thinking that he was so frail he would never be able to do it. Well, fast forward a year and the lacrosse season has just started and he is playing! The first practice was this past week and I had the biggest smile on my face when he went out the door decked out with all the gear. This week was a good week!
03-23-2013, 03:33 PM   #40
DustyKat
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That is fabulous Twiggy! What an absolute joy to read and such a deserved reward for you both after all you have had to endure.

Onwards and upwards to your lad and I hope he had a thoroughly good time!



Dusty. xxx
03-23-2013, 03:38 PM   #41
Niks
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That is amazing news!!!
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Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis



Peristeen Irrigation every other day.
Citramag/Picolax

Waiting for bowel stimulator!
03-24-2013, 11:27 AM   #42
Tesscorm
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Great to read Twiggy!! So happy for him!
04-06-2013, 04:23 PM   #43
DustyKat
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Well it is two years today since Matt had his resection.

Whilst I remain forever vigilant and eagle eyed, , all seems to be going well, touch wood!

I can't thank you all enough for the support, love, advice and laughs! You're the best!

Onwards and Upwards!

Dusty. xxx
04-06-2013, 09:21 PM   #44
CarolinAlaska
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Congratulations!
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Carol
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.
04-06-2013, 09:39 PM   #45
Tesscorm
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Great news that he's done so well, Dusty!!!!
04-06-2013, 10:31 PM   #46
araceli
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That's great. I am so happy to hear that.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
04-14-2013, 12:01 PM   #47
Jmrogers4
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I posted in Jack's thread but it was suggested I post here as well.
We had a GI appt./check up on and GI was so impressed he kept saying WOW!
We are in our 10th month on LDN and blood work from February is normal; upper and lower scopes from February are normal - no signs of active disease.

Added supplemental EN at that point as Jack was still not growing or gaining weight, he was in 1st percentile for BMI. 8 weeks later he is at 50% percentile for weight, he is still 15th percentile for height but I fully believe that will change over the next year or so (He was always 75th before crohns). He has grown an inch in that 8 weeks and gained 23 pounds!

At this point all labs are normal (touch wood), he feels great, has color in his face, no joint pains, no eczema, normal bowel movements (1-2 a day), no stomach pain, maintaining weight, doesn't wake up as tired as he went to bed. Dare I say we may even be seeing early signs of puberty (He has his first 2 zits on his face, we had a talk about making sure we are washing his face everyday, especially after baseball when he is sweating a lot).

We go back to GI in 3 months for labs to check progress and make sure he is still moving in the right direction. 3 years form diagnosis, he is feeling and acting 100%

Thank you all for your advice and support for the past year I'm so glad I found this forum and it has certainly helped me ask the right questions and I think through that get Jack to this point
04-14-2013, 12:03 PM   #48
Farmwife
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What a blessing all the way around.
You've also have been a great help to this forum.

HUGS
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
04-14-2013, 12:15 PM   #49
ChampsMom
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Hip-hip-hooray!! GREAT news!!

Thanks for sharing!!
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Shell

Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
Prayer
Priesthood Blessings
04-14-2013, 04:21 PM   #50
crohnsinct
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Ha! Read this on his thread but like a great book it was just as exciting to read it again!!!!!
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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
04-14-2013, 05:32 PM   #51
Niks
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Fabulous news Jacqui !!

xx
04-14-2013, 05:42 PM   #52
AZMOM
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Jacqui! Love your post and so glad to see someone on a successful path!

J.
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
04-14-2013, 05:50 PM   #53
my little penguin
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WOOHOOO!!!
Love IT!!!
04-15-2013, 05:57 AM   #54
Dexky
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Awesome post Jacqui! And your new profile pic…I wonder if Jack could teach my kids how to use a cell phone? All they do is stare at them and punch them with their thumbs!! If they ring, it startles them so much they may drop it!
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Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
04-15-2013, 09:37 AM   #55
Jmrogers4
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Yeah, that is only because he is talking to me and I told him to call me not text me after school.
04-15-2013, 10:21 PM   #56
Tesscorm
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Okay, off subject but just an idea for parents with tweens/teens... I told my kids NO TEXTING (at their current age, 18 & 19, it's now allowed! ) but, when they were younger, I wanted to hear their voices... anyone could be responding if it was text only and, once parties, etc. started, I also wanted to hear that they were coherent
04-15-2013, 10:31 PM   #57
Jmrogers4
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Yes that is why I tell him he must call me not text, he can text his friends but I have to hear voices. I'm glad I'm not the only one Tess. He can only text me like if I'm picking up dinner what is his order, very simple questions but must have phone calls when a change of location for him happens. If he has told me he is going to one place and either goes somewhere else or changes plan he has to do it with a phone call not a text. And he better ANSWER the phone if I'm calling
04-15-2013, 10:41 PM   #58
Mehita
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Heck, I'd be happy if I woke up one morning and DIDN'T see DS's phone still sitting on the kitchen counter. I get more texts and calls from his friends than I do him.
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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

Last edited by Mehita; 05-14-2013 at 07:18 AM.
04-16-2013, 05:21 AM   #59
Dexky
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And he better ANSWER the phone if I'm calling
I hear ya!! It's not like they haven't got it nearby!
04-16-2013, 05:25 AM   #60
Catherine
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They can only answer it they take it with and turned it on

Still angry over mobile phone issues with number 3 child on Thursday.
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Catherine
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)
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