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02-06-2013, 07:02 PM   #1
AZMOM
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Less than ecstatic

I have far less to deal with than so many of you that I hate to complain. So........I'll just whine I guess.

Called Rheumatology because Claire is nearly refusing to use her right hand, crying etc. The consensus between the GI and the Rheumatologist is that since all her numbers are good EXCEPT fecal calprotectin (crept back to 577) and some borderline anemia that the joint pain is secondary to the gut problem.

GI put the kabash on EN because he feels it is most effective for small bowel disease and Claire's has always been "diffuse". After some debate we agreed to a 5 day "burst" of steroids and a bump in methotrexate since she's 85 pounds.

The black dog, Dusty, is sniffing around my porch.

Love you all - hugs to all of us that would take it all away from these kids in a MINUTE if we could.

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
02-06-2013, 07:07 PM   #2
my little penguin
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Hugs
Don't apologize for posting
We all have issues and when its your kid well its important .
Hope the Mtx bump and steroid burst help.
Poor kiddo
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DS - -Crohn's -Stelara
02-06-2013, 07:50 PM   #3
Tesscorm
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Absolutely what MLP said... we're all here to support one another, big or small!

Sorry that Claire's having to deal with this! I hope the steroids and increase in metho relieve her pain quickly!!
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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
02-06-2013, 08:08 PM   #4
Farmwife
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Tell your girl there's a 4 yr old in Michigan that knows how she's feeling.
I hope you find meds to make her pains go away.
Who would have ever thought that our young ones would have more joint pains then us.
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
02-06-2013, 08:20 PM   #5
Dexky
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J, I wonder if Dr. A ever prescribes EN? He said we could try it …but!! He's just not on board with it seems to me. Hope Claire feels better soon!
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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
02-06-2013, 09:46 PM   #6
AZMOM
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I think he is on board when he thinks its clinically appropriate. We had discussed it as an option in the past. He did not, however think it was appropriate this time. Sigh.....

J.
02-06-2013, 09:53 PM   #7
Jmrogers4
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This is where we come to whine and everybody understands, she's in pain and you want to fix it. I don't think that is whining. Hope the "bump" takes care of it.
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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
02-06-2013, 10:43 PM   #8
Patricia56
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Whine away. I'll bring the cheese and crackers. The chocolates are for me however.

Regarding the EN. Um.

A certain rebellious parent who shall remain nameless has been known to do what she felt best when she was certain there wouldn't be any negative ramifications from doing what she felt best. In defiance of a (or maybe more than one) doctor.

IE - I'd try EN using OTC products anyway. Should know if it will make a difference in about 2 weeks.

Could do it with the pred or after the pred if the symptoms don't resolve.
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Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.

Last edited by Patricia56; 02-07-2013 at 02:10 AM.
02-07-2013, 12:18 AM   #9
Twiggy930
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Hoping the meds get her feeling better soon. Watching your kid in pain is just heartbreaking.

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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.
02-07-2013, 01:06 AM   #10
CarolinAlaska
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I had my pity party yesterday. I'll come to yours today, if I'm invited !

I'm sorry your dd has to have pred. I hope she gets better quickly and stays that way.
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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.
02-07-2013, 06:16 AM   #11
AZMOM
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Come on over, CarolinAlaska. I've got plenty of room for us all.
02-07-2013, 06:30 AM   #12
Farmwife
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Hey if theirs a pitty party can I come. I'll bring the cookies and punch (non-alcoholic).
02-07-2013, 06:31 AM   #13
Dexky
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I'll bring the REAL punch
02-07-2013, 08:29 AM   #14
AZMOM
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I think I'm ready for a glass of REAL punch.
02-07-2013, 10:04 AM   #15
QueenGothel
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I hope the bump up helps too! We are with you! My avatar speaks for itself. I usually supply a different kind of punch. since I am one of "Those moms." Keep us posted. I hope her arm quits hurting her. Poor kiddo!
02-07-2013, 02:12 PM   #16
Jmrogers4
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I'll take some "real" punch and some of farmwife's cookies. Partytime!!!
02-07-2013, 02:27 PM   #17
AZMOM
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Call from the school. Chest pain (heartburn). Doing Prilosec with the steroids but not a great sign after 2 doses. Sigh...... Minor.....yet not......

J.
02-07-2013, 03:39 PM   #18
crohnsinct
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Did someone say wine??!!! Oh right whine

J - really whine away. It is totally justifiable. So hard when you are sailing along and hit a setback. I think we all suffer a bit of PTSD. Setbacks bring us to THAT place. And we will all go there with you! We travel as a pack good or bad! With wine, punch and cookies of course!

I really hope the burst works out. Poor pumpkin.
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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
02-08-2013, 02:56 AM   #19
CarolinAlaska
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ILove you all - hugs to all of us that would take it all away from these kids in a MINUTE if we could.
J.
When trying to get Jaedyn to try inserting the NG tube again, I asked her if it would help her if I got one and did it with her. She looked at me in amazement, and said "You would do that?!" I told her I would if it would help. Then she said no. She wouldn't try it again even if I did it too. Wish I could have done it instead of her.

Patricia, I read that you have chocolate and you're keeping it to yourself. Is that milk chocolate or dark chocolate? If it is dark chocolate, I might have to wrestle you for it! But if you won't share it, you better not bring it to the party... could be dangerous!

Carol
02-08-2013, 08:21 AM   #20
Crohn's Mom
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Awe man J ~ I'm late to your whining party !

How's Claire's heartburn today ?
Poor little love.
Is the Pred helping with her hand pain yet ? Or anything ?

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~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
02-08-2013, 12:07 PM   #21
Patricia56
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That would be milk chocolate Carol.

But I suppose I could be persuaded to bring some of that dark stuff too.

I might even be convinced to share the milk chocolate.

But it would take a lot of convincing since it would definitely include those chocolate cream filled ones, chocolate turtles and those fabulous chocolate drenched coconut ones from Sees.
02-08-2013, 12:10 PM   #22
Jmrogers4
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I love Sees!!!! We did not have a store for many years here and of course this was before internet, so we would get the "BIG" box from family in California every year for Christmas. I don't think the box ever made it to Christmas day
02-08-2013, 12:40 PM   #23
CarolinAlaska
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That would be milk chocolate Carol.

But I suppose I could be persuaded to bring some of that dark stuff too.

I might even be convinced to share the milk chocolate.

But it would take a lot of convincing since it would definitely include those chocolate cream filled ones, chocolate turtles and those fabulous chocolate drenched coconut ones from Sees.
You're in no danger from me if you stick with the nasty sweet milk chocolate. Give me the pure, rich dark chocolate that goes straight to the veins! Lol
02-08-2013, 12:40 PM   #24
Patricia56
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Well given all those years of deprivation I guess I would be willing to share some chocolate with you JM.

Sounds like I am going to have buy at least a 5# box.

So we would have chocolate, wine, crackers, cheese and two kinds of punch plus some cookies.

If we're going to be really self-indulgent I think we should also have some creme brulee.

Who wants to use the torch to melt the sugar on top?

We could also use the torch to light a fire under a doctor or two or maybe burn an effigy labeled Crohn's. What do you think?
02-08-2013, 12:47 PM   #25
Patricia56
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Wonder if the effigy would burn long enough to toast marshmallows...
02-08-2013, 01:41 PM   #26
CarolinAlaska
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02-08-2013, 03:57 PM   #27
crohnsinct
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Marshmallows? Chocolate? Fire?

SMORES! You in Dusty?
02-08-2013, 04:50 PM   #28
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Ooooh, me, me, me! I want to join in with all that yummy stuff.
Hoping the heartburn is easing off and she is feeling a bit better!
02-10-2013, 10:39 PM   #29
AZMOM
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Dr Dusty - pain just under rib cage on right??? Only thing I can think of is liver. Any ideas?

J.
02-10-2013, 11:01 PM   #30
Crohn's Mom
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J is she having any urinary/kidney symptoms ? That could cause a pain there.
Poor Claire
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