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


 
11-18-2012, 06:29 PM   #31
momoftwinboys
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H had his third infusion Monday. He is feeling really good. He has gained weight and had small amount of growth. (Knock on wood)
He is constantly messing with his brother so we know he is feeling feisty. Crohnsinct you can gauge O's progress thru swimming...it appears our gauge will be the amount of brotherly bickering and wrestling.
His CRP is less than .5 and his SED is 15, lowest it has been since dx.
He also had appt with GI this week. He is no longer taking aza as his GI usually stops it after 2nd infusion (we did not get the memo so in H's case we stopped after 3rd infusion). Fingers crossed the Remi continues to work for him.

Thanks again for the input when we were making the decision.
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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
11-18-2012, 07:29 PM   #32
Twiggy930
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Great 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.
11-18-2012, 07:54 PM   #33
Farmwife
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Glad to hear!

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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
11-18-2012, 08:53 PM   #34
crohnsinct
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Brotherly fighting...LMAO! Hey whatever works!

So glad things are on the upswing for you. It is so great when you find something that works. Makes all the scary warnings so much easier to take doesn't it.

Hope things just get better and better for him!
__________________
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
11-19-2012, 04:44 AM   #35
DustyKat
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Oh Mum, this is so fab to read!

May it keep on keeping on.

Dusty. xxx
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Mum of 2 kids with Crohn's.
11-19-2012, 07:06 AM   #36
Sascot
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That's fantastic news! I hope it carries on for a long time!!
11-19-2012, 07:47 PM   #37
my little penguin
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Yippee!!!!
We have brotherly fighting as well.
As in DS is now starting the fights.
We are also tracking swimming.
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DS - -Crohn's -Stelara
01-13-2013, 07:18 PM   #38
momoftwinboys
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Knock on wood.... H had his fourth remicade infusion Monday. His lab results were the best they have ever been, he is feeling good, and he gained 3 lbs since the last infusion eight weeks ago. For the first time since dx his SED rate was NORMAL. I love normal.

The boys had a basketball game yesterday (won 29-9) and hubby said you could tell H's energy level was great.:basketb all: He thinks he can get thru the season, but his basketball shoes are getting tight in addition to another pair of sneakers that he outgrew that we got this summer.

Been really busy with work and the boys and hop on the forum on my phone when I get a chance. My thoughts and prayers are with those that are struggling on the moment.
01-13-2013, 07:25 PM   #39
my little penguin
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We love normal as well.
It is great
01-14-2013, 04:30 AM   #40
DustyKat
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Woohoo! Another fab update! This is so wonderful to read Mum.



Dusty. xxx
01-14-2013, 06:49 AM   #41
AZMOM
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SO EXCITED for you! Cheers to weight gain and normal ESR!

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
01-15-2013, 08:54 PM   #42
jmckinley
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Normal is awesome! So glad to hear that he is doing well!

03-15-2013, 05:03 PM   #43
momoftwinboys
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H had his 5th remicade infusion and GI checkup recently.

He had strep throat 3 or 4 weeks ago (and generously shared it with his twin and his dad). He recovered pretty quickly with the antibiotics with no problems.

OK, I am a little afraid to say it..... do not want to jinx it ...knock wood... I am whispering this...H's GI said a couple of weeks ago that H is in remission. Labs look great, (his labs usually reflect his condition), feels good, good appetite, growing and gaining weight. Whatever they call it, I hope it continues forever! We are grateful and enjoying it for as long as it lasts

My heart breaks for so many going through so much, thought I would share some good news.
03-15-2013, 05:09 PM   #44
Clash
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Woohoo!!!!

That sounds like awesome news!!! If he feels great, is eating good and growing, they can call it whatever they like...I'd still love it!!!
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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
03-15-2013, 07:37 PM   #45
Mehita
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So glad to hear he's feeling better!!
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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
03-15-2013, 08:40 PM   #46
Twiggy930
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Such great news! I hope it continues for a really, really long time!
03-15-2013, 10:59 PM   #47
upsetmom
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Glad to hear some good news.
I hope it lasts forever.
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Daughter dx CD March2012...
(aged 14)

Currently on:
40mg Humira
125mg Imuran




Dx Premature Ovarian Failure 2014



03-16-2013, 04:17 AM   #48
Sascot
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Woo hoooooo!! Love to hear good news - long may it continue! So nice when a hard decision turns out to be the right decision
03-16-2013, 05:57 AM   #49
DustyKat
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This is so wonderful to read! May it keep on keeping on!



Dusty. xxx
03-16-2013, 08:04 AM   #50
AZMOM
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Yay!!!!!!! Woo hoo!!!!!!!!!!!!

Celebrate EVERY good day.

J.
03-16-2013, 01:17 PM   #51
Jmrogers4
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Fabulous news, hope he enjoys it for many, many years or until they find a cure!
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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
03-16-2013, 11:15 PM   #52
CarolinAlaska
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Sounds like honey to a mother's heart!
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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.
05-04-2013, 11:06 PM   #53
momoftwinboys
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update on my son.

H has been on remicade about 7 months...and knock wood again...he is doing well on it. His labs last week were all normal again. He is looking and feeling good.

He has gained about 20 lbs in the last 7 months, eight of them in the last 8 weeks. We talked about how well Jmrodgers4's Jack was doing on the shakes and he started doing 3 boost shakes with mint chip ice cream a day for about a month. He has dropped to one or two a day since he has filled out. Hopefully height is next now that he has some weight on him! When H started remicade, his twin was 25 lbs heavier and now the difference has shrunk to ten pounds. They are looking more alike and some of their friends have gotten them confused. Even I have had to look twice when I see only their heads.

We have filled out the paperwork for Camp Oasis and he is very excited to go...just waiting to hear about his acceptance.

I am grateful my boy is doing well right now. Hoping for a cure for all our kiddos!
05-04-2013, 11:10 PM   #54
Mehita
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That's great news!!
05-04-2013, 11:23 PM   #55
Twiggy930
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That is great news!!! So glad to hear that he is feeling so well. Can't believe it has been 7 months!
05-05-2013, 12:05 AM   #56
upsetmom
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What great news!!!
05-05-2013, 03:52 AM   #57
Sascot
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Thanks for the update! Wish they had these camps here as well.
05-05-2013, 02:22 PM   #58
CarolinAlaska
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That's great. Which area camp will he be going to?
05-05-2013, 02:41 PM   #59
momoftwinboys
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He will be going to the camp in Missouri.
05-14-2013, 04:50 PM   #60
DustyKat
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That is such a fab update! So happy for you Mum!



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