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Crohn's Disease Forum » Parents of Kids with IBD » Options? - Remicade, MTX or 6MP


 
06-15-2013, 11:50 AM   #61
momoftwinboys
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H had his 3 mo check up Thursday.

Good news---he grew an inch since his 2/28 visit (and added 14lbs some of it reported above) He is 4'9' and 98lbs now.

Before crohns H (and his twin) tracked 50% height and 75% weight (muscular). Since Crohns, he has been tracking 25% height 50% weight. Drumroll....this visit he jumped to 32% height 69% weight. A beautiful sight on the growth curve chart! GI was pleased and attributed it to Remicade. I agree that it is likely the growth would not occurred if the Remicade had not put him in remission. However, my family is all in agreement, the period of 3 boosts a day for 4 weeks in March/April jump started the increase. We watched the transformation during that period. He is gaining on his twin and we are having a harder time telling them apart when we look quick.

I mentioned on his swimming pool? rash thread, we need to watch his rash. It is getting better. GI would be concerned if it was poison ivy/poison oak as Remicade makes it spread like crazy.
http://www.crohnsforum.com/showthrea...273#post665380

Asked about Ophthamologist appt and GI said yes he should go annually..Thanks to the parents on crohnsforum i knew to ask...

Other than that...all appears to be going okay. (Knock wood)
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Son (age 13) dx Crohn's October 2011 (age 10)
Azathioprine 10/2011-11/2012
Remicade October 2012
krill oil, multivitamin, liquid Vitamin D/Calcium/Magnesium, zinc, pro-thera complete probiotic.

"The decision to have a child is to accept that your heart will forever walk about outside of your body" Katherine Hadley
06-15-2013, 11:58 AM   #62
Clash
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That is awesome news!! I know you are ecstatic!! Woohoo!
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Clash
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
06-15-2013, 12:40 PM   #63
my little penguin
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:soled ance:

Love the weight and growth. DS did the same on remicade

long may it continue
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DS - -Crohn's -Stelara
06-15-2013, 05:41 PM   #64
upsetmom
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Glad things are going good!!!..

I hope it continues for a long time.
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Daughter dx CD March2012...
(aged 14)

Currently on:
40mg Humira
125mg Imuran




Dx Premature Ovarian Failure 2014



06-15-2013, 08:17 PM   #65
DustyKat
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This is so wonderful to read! May it keep on keeping on!



Dusty. xxx
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Mum of 2 kids with Crohn's.
06-15-2013, 09:08 PM   #66
Jmrogers4
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. However, my family is all in agreement, the period of 3 boosts a day for 4 weeks in March/April jump started the increase.
Could not agree more, that was our experience as well although I do think the meds allowed us to get full effect from the supplements.

So glad he is growing and gaining. Wooohooo Go H! Keep it up.

(We need a cheerleader emoticon)
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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
06-15-2013, 10:26 PM   #67
DustyKat
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Dusty.
06-15-2013, 11:10 PM   #68
Twiggy930
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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.
06-16-2013, 12:02 AM   #69
Jmrogers4
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Thanks Dusty! Love the cheerleader
06-16-2013, 02:48 AM   #70
DustyKat
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I will have to see if we can get it added to the smilies.

Any chance Crabby, David?

Dusty.
06-16-2013, 07:18 AM   #71
Dexky
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Leave it to Dusty! Emoticon queen!
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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
06-17-2013, 03:22 PM   #72
David
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:dusty: <--- text replacement to use

06-17-2013, 03:24 PM   #73
upsetmom
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.......Had to use it!
06-17-2013, 03:38 PM   #74
Jmrogers4
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Woohoo! Ask and you shall receive. Thanks Dusty and David!
06-17-2013, 04:07 PM   #75
my little penguin
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Love it!!!
06-17-2013, 04:36 PM   #76
CarolinAlaska
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Glad to hear he is doing so well!
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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.
06-17-2013, 04:40 PM   #77
Farmwife
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LOVE IT! This must go in my sig..
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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
06-17-2013, 06:42 PM   #78
Dexky
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Haha, awesome!! It's a Dusty
06-17-2013, 06:49 PM   #79
crohnsinct
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What awesome news! Makes the scary monster drugs look like that basket of kittens eh? Did you post on the success thread? Certainly worthy of being there as well. Gives hope to those still waiting. THanks for sharing.

My favorite Dusty smiley is still Dusty kat's poop But of course why would nasty city girl like a pink pom pom toting cheerleader over a pile of dancing S$*t!
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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
08-24-2013, 11:56 AM   #80
momoftwinboys
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Quick update---
H had his infusion couple of weeks ago. Knock wood. Labs still normal (and we love normal). He gained another 4 lbs and grew another 1/2 inch. Overall all is going well.

Started cross country for the first time at school. So far so good.

He had a great time at camp oasis and wants to go back next year.

CIC, I am a little afraid to jinx anything by posting on success thread. Maybe wil be more brave in time.

Wishing all remission and a cure soon.
08-24-2013, 04:07 PM   #81
DustyKat
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Oh wow! Thanks for the fab update mum!

I am so happy for you and your lad. May it keep on keeping on forever!

Onwards and Upwards!
Dusty. xxx
08-24-2013, 08:31 PM   #82
Twiggy930
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Fantastic news! So glad to hear it.
08-24-2013, 08:55 PM   #83
my little penguin
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Love it
08-29-2014, 12:30 PM   #84
momoftwinboys
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So, it has been a year since I last updated this thread. Knock wood, H remains in remission and continues to have success with Remicade. (always a little worried about posting good news, afraid to jinx it)

He has been relatively healthy this last year. He had a virus that turned into an upper respiratory infection last winter that caused his infusion to be pushed back a week. Other than that, so far so good.

His numbers are good, he has gained 35 lbs and 4 1/2 inches in the 22 months since starting Remicade. He is within 1/2 in and 5 lbs or so of his twin so that is good progress.

In the last year, he became a member of the National Junior Honor Society, ran school cross country, swam for school swim team, summer swim team and made swim conference, hunted, fished, earned his black belt in Tae Kwon Do, and added lacrosse to his list of things he likes to do. In other words, he and his brother are keeping us busy. We are so happy and proud of him.

We have been enjoying his remission and living life (and trying not to worry about things) Wishing remission until the cure is discovered for all dealing with this disease.
08-29-2014, 01:16 PM   #85
Farmwife
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So glad to hear the great update.
grace will be starting Remicade soon and I hope to be able to give the same great update.
Also I know how he must love being close in weight and height to is brother.......I'm a twin myself and would have hated my twin to be taller. lol
08-29-2014, 05:02 PM   #86
Jmrogers4
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That's great, thanks for the fab update. Hope it continues forever
08-29-2014, 05:13 PM   #87
Sascot
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Great update, lovely to hear the good news
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Crohn's Disease Forum » Parents of Kids with IBD » Options? - Remicade, MTX or 6MP
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