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07-18-2013, 06:48 PM   #451
crohnsinct
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WOWSA! That is amazing. I have heard it is great for peri anal issues! Fingers crossed things get better and better!
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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
07-18-2013, 08:12 PM   #452
Crohn's Mom
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I tell ya - I had high hopes for this to work quickly but I seriously didn't expect ANY results to be seen today !
I thought maybe a couple weeks ?
Wowza!
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~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
07-18-2013, 08:16 PM   #453
Clash
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AWESOME NEWS!!! So glad to hear she had such improvement today!!
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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
07-18-2013, 08:16 PM   #454
kimmidwife
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That is amazing!!! I am doing a happy dance for you guys!
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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.
07-19-2013, 02:21 AM   #455
DustyKat
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Location: New South Wales, Australia
I AM SO HAPPY FOR YOU BOTH T!!!



So long coming and so well deserved! May this a lifetime for your precious girl.

Dusty. xxx
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Mum of 2 kids with Crohn's.
07-19-2013, 05:39 AM   #456
Dexky
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That's great news T!! Maybe they could let Austin and Gabs be Remi mates!
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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
07-19-2013, 07:13 AM   #457
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Join Date: Jul 2013
Location: Ithaca, New York
So today was the day Gab started Cimzia !

I was so nervous about it, and she was so excited. I can understand her excitement; it's a hopeful window into a new, healthy life !
I just didn't want to have to give her the injections; I always feel like I'm the one who has to play (bad guy).
Well, she completely surprised me and the nurse....She did it on her own the first time! WOW ! The nurse helped her to guide the first one in and make sure she was doing it correctly. Then she did the second one all on her own with no problems.

For those of you that don't know, Cimzia is taken once a month, with 2 injections. Gab chose to do them in her stomach (which also surprised us!) instead of the thigh; but you can do them either way, or one in each. It is the patients choice.

Today was her first dose of the "loading doses". She takes the 2nd round in two weeks, and the 3rd two weeks after that, then once a month.
So far there are no ill side affects and she feels just fine except she is quite tired now so she is napping for a bit.
Oh, and she said the injection didn't hurt a bit ! We warmed the syringes to room temperature for around 10 mins before administering. And, she didn't use a cold pack or anything on her injection site before hand.

I thought I would start this under a new thread for the parents of children who may be considering taking this, or are taking this. Maybe we can help each other !
I know I probably should have posted under the "treatments" thread, but I also know most of the parents come here for their advice and support.

I suggested to Gab that she keep a daily journal for a while of any side effects, feelings, symptoms, etc. So that possibly she can help others who are considering Cimzia since it is so new to Crohn's ( I believe it's only been 2 years since it's been started for treatment of Crohn's)

Anyhow, It's a great day so far here at our home ! Fingers crossed that this will be her wonder drug and she can begin a normal healthy teenage life !


p.s. I had no idea which "icon" to use for this thread I hate the word "drugs" but it seemed about as fitting as I could find in the choices
Hello there,
I too am a mom of a Crohn's kid. I would like to offer an out dated blog that I worked on for a while to offer any advice that I have. Taylor was diagnosed when she was 2 with Cronh's and Colitis. She now at 16 has a long list of diseases. The meds cause severe issues that are very hard to fix. Taylor has had a complete colectomy and several other surgeries. She has been drug free, and flare free for 3 years. She does suffer from seizures due to remicade. I remember feeling nervous about every new drug that she took and Taylor too feeling excited for a new start. Your gut instinct is right. Taylor is a raw-vegan now that juices daily and this has changed her life. We manage her seizures with molasses if you can believe it. In the process of a long list of medications for many years, Taylor has these conditions. Epilepsy, Psuedo Tumor Cerebri, (spinal fluid back-up) Osteopenia w/degernative disk disease in lower lumbar and Von Willebrands Disease. (severe bleeding disorder) I blame these harmful chemicals that I allowed Taylor to be treated with. Which would only relieve her symptoms for a period of time and then stop. We would then have to try something new. Supplements and organic rich nutrient food is how she got her life back. Yoga and meditation also kept her in a healthy mind set which is so important. Of course asking a teenager to eat healthy and do yoga is not easy, but if she wants her life to be "normal," it sure is an incredible way to start. How are you? Are you taking care of yourself? I hope you check out my blog and reply. Taylor may be able to help your daughter feel like she is not alone.

Blessings,
Regina

Capple House Blog
07-25-2013, 12:22 AM   #458
DustyKat
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How is Gab doing T?

Dusty. xxx
07-25-2013, 08:45 AM   #459
Crohn's Mom
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She's doing pretty well thank you!
She's not as "high energy" as she was, but that's understandable. She works 40 hours a week right now in the same restaurant as I do, so I know she works hard! LOL
Still having pain in the usual, LRQ but she's managing very well.
We're both looking forward to the 31st for her next infusion.
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