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12-16-2010, 03:30 PM   #1
AZMOM's Avatar
Join Date: Nov 2010

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the other shoe

Isn't there some expression about waiting for the other shoe to drop? Or is it foot? Heck, I don't know.

We are really not having a crisis. Claire is doing well. Other than her crabby liver. We had to stop 6MP for a month with a liver crisis. Then we were back at 1/2 dose for 3 weeks and all was well. Now we are at 3/4 dose and checking her labs today. Now - lab day, I know, isn't a huge deal. So why do I obsess until we get the results???? I guess when things are "good" we parents are so used to being "on alert" that it feels like waiting for the other shoe to drop. It's like I expect bad news so I won't be disappointed if it isn't good. Silly I know - I'm working on changing my outlook.

Enough yammering from Claire's Mom. :-) Please keep us in your thoughts for good results though. We so want 6MP to work for a loooooooooooong time.

Thanks for listening.

Claire's Mom

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
12-16-2010, 03:49 PM   #2
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Join Date: Dec 2010
Location: spartanburg, South Carolina
Prayers, positive thoughts, hugs, and assorted crossed body parts.....Lil miss claire will have good results (repeating in my mind). Let us know the results. You are a terrific mom!

I am 46 and my mom still calls me and says "Have you heard anything yet?"

Hugs to you!
aka Breezy

Last edited by mizgarnet; 12-16-2010 at 03:55 PM.
12-16-2010, 04:18 PM   #3
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Hi Breezy! I'm glad to see you on here. I just found this forum a few weeks ago and have found this to be a really loving, caring group. Love it!

Claire's Mom
12-16-2010, 07:53 PM   #4
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Join Date: Mar 2010
Hope results are good!!!
Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
12-16-2010, 08:00 PM   #5
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Location: Kentucky

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Hi AZ!! EJ's labs day was yesterday. We got some less than stellar news about his platelets and were told he was anaemic though his iron levels are ok. Now we are to get a stool sample. We are still waiting for the 6mp results as the liver specialist EJ sees says all these results can be attributed to problems with the 6mp. I'm hoping it's just a needed med adjustment.

I hope your news is better than this!! Good luck!!
Mark, father of EJ

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

No more 6mp
Currently in the Humira Club
12-16-2010, 09:30 PM   #6
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Mark - Sorry things were less than stellar for EJ :-(. That is definitely an "other shoe". I know you'll get it figured out.... When we had the enzyme issues and the bilirubin, Dr. Acra checked the metabolites and said he didn't think it was the 6MP. But then everything righted itself when we stopped and all the other liver tests were negative so now we blame the 6MP. Poor 6MP - lol. I told someone at work who asked about Claire that it's like walking a tightrope sometimes....easy to tip one way or the other......I know you can relate.

Here's a funny story. Claire went to the lab with her Daddy and apparently her lab tech was not the best at drawing on kids. Stuck her the first time, wiggled the needle around, got nothing, pulled it out and stuck her again. I'm thankful they got it that time. So, she told me this whole thing and I said, "Did you cry?" I got a, "Noooooo Mother" Then she rolled her eyes and said, "That girl was not the best needle lady though."

I love my kids. :-) I'll let you know how it all shakes out.

Claire's Mom (By the way, I actually have a name - it's Julie :-))
12-16-2010, 11:46 PM   #7
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AntsMommy's Avatar
Join Date: Sep 2010
Location: Highland, New York
Julie, I can understand the feeling. When things are going well, you are sitting on edge just waiting for the bad to start again. It is enough to drive you crazy!

I have my fingers crossed that Claire's results are great!

Mark, thinking of you and EJ also! I hope it is just a quick med adjustment!


Mom to 16 year old son with Crohn's Disease
Diagnosed September 2010
Phlegmon 1/2011
6MP - started 12/22, increased to 50 mg
No more pred!
1/31 - ileocolic and small bowel resection, 2 strictures removed
12-17-2010, 06:28 AM   #8
Join Date: Aug 2010
Hi azmom, hope things go ok and you get good results x
12-17-2010, 02:08 PM   #9
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Well they aren't "bad" but they aren't "good" either. I'd say borderline. So, I'll just be waiting to see what he wants to do. In the meantime, she's going like gangbusters so I'm not going to worry.

Julie (still Claire's Mom :-))
12-18-2010, 07:00 AM   #10
To save time...Ask Dusty!
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Location: Kentucky

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That's where we are too Julie!! EJ feels good and those are the best results of all! Here's to all our kids continuing that way!!

I hope Claire has a great Christmas break!!
12-21-2010, 09:03 AM   #11
Join Date: Oct 2010
Hey guys,
Sorry Ej and Claire are having to go through this right now. At least they feel good! I feel like I should know what all of those tests are... We went for labs yesterday too, haven't heard back yet, but I think since we've only been on 6mp for 6 weeks that I don't get specifics from DR about levels... they just have been saying that levels are "good". Marilena started yesterday saying her tummy hurt and we were up all night with pain...hoping its a bug, not Crohn's. She's supposed to hit another wean on Thursday from pred. I know about the other shoe...we've been doing great and I just can't stop waiting for what could happen in a few weeks when pred is completely gone. Thank you to all of you that help us stay sane.
Jamie, mami to Marilena 10
dx 10-7-10 Crohn's in terminal ileum

Pentasa 1000 mg
6 mp 12.5 mg
Omega 3 1000 mg
Liquid Vitamin C
Calcium tablets
Emulsified Vitamin D 2000 IU
Hugs (daily)

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