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02-10-2013, 11:14 PM   #31
AZMOM
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Not really, T. Complained today of mid-back pain, neck, ankles, etc etc etc
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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
02-11-2013, 02:18 AM   #32
CarolinAlaska
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Liver inflammation, maybe, but could also be gastritis, ulcers, reflux, gall bladder, gas pains... Lots of things there.
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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.
02-11-2013, 02:24 AM   #33
CarolinAlaska
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For what it's worth. I know it sounds wierd and I don't understand it, but my daughter has found a very helpful, nontoxic thing that helps with her joint pains. She puts an oil on her knees when they are inflamed. It is called geranium oil and both times she used it, it took the pain away within minutes.
02-11-2013, 06:34 AM   #34
Dexky
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Sorry to see she hasn't got much better J! How were her latest bloods? When's her next appt.?
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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
02-11-2013, 07:04 AM   #35
AZMOM
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Dex - latest labs were decent with the exception of her fecal cal. Checking everything again in about 1 1/2 wks. Im sure it was way to quick to be of significance but she had her increased dose of methotrexate this weekend. Im sure Im worried about her liver and this "new" complaint put me on high alert.

It had only been a few hours so Im sure Im unjustifiably paranoid.

Claire told me yesterday she feels like a "walking pile of poop". I told her at least she doesn't smell like one. . How's that for bad parenting???

J.
02-11-2013, 11:20 AM   #36
Jmrogers4
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I would have said the same thing. Hope she is feeling better and it is just something minor
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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
02-11-2013, 07:06 PM   #37
Crohn's Mom
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J that is so funny !

ya !
Hope it's something easily remedied
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~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
02-11-2013, 10:42 PM   #38
my little penguin
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Waiting when they feel like poop even walking poop
Is just hard.
Hope the pred improves things soon for her.
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02-11-2013, 10:54 PM   #39
AZMOM
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Thanks MLP. Last dose of the "5 day blast" was today. Im decidedly discouraged.
02-12-2013, 02:20 PM   #40
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At outpatient for labs. Abdomen distended. Says it "hurts when I breathe".

Sigh
02-12-2013, 02:26 PM   #41
Jmrogers4
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praying for you and Claire, hope everything is okay.
02-12-2013, 03:02 PM   #42
Crohn's Mom
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Oh no J !
Please let us know when you can

💜❤
02-12-2013, 05:01 PM   #43
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ESR AND CRP are fine. WBC high at 15.7. Urine had some protein but other than that, normal. Chest xray normal. LFTs are fine. Pediatrician's theory is that it's just something viral so she feels "crappy".

He said that because she's "complicated" (understatement of the century lol) that if she gets any worse and he were me, he'd just drive her to the ER at Vanderbilt.

And folks....there you have it.....

J.
02-12-2013, 05:04 PM   #44
Crohn's Mom
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So with the high WBC did they prescribe her antibiotics?
I'm confused - how do they determine "viral" with a high WBC?
Is it possible she has caught her brothers virus ?

Big hugs - poor kids! And momma J!
02-12-2013, 05:08 PM   #45
Jmrogers4
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She's not "complicated" as farmwife would say, she is just an overachiever
02-12-2013, 05:11 PM   #46
AZMOM
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Hell, T, I don't know. He did not prescribe her anything and while we were in the office said he's not comfortable throwing drugs into Claire without a clear picture. I appreciate his honesty but I'm at a loss. I have a kid who's hardly functioning who's usually hell on wheels. And, she has never really perked up with the prednisone this team. It all adds up to a nervous Mom.

I emailed the GI nurse with what he said about Claire and also the ER advice. I told her I avoid ERs unless I think we're circling the drain and that I'd touch base with her tomorrow. I'm hoping her doc will be back in - apparently he's sick too!!!!

Oldest child dx today was pneumonia - walking. He's afebrile. I'm mystified by that one because he is sick as a dog. Claire isn't coughing. NO signs of upper respiratory issues.

What will tomorrow bring? Thunder snow? Indoor outbreak of poison ivy? Full blown anxiety attack for Mommy? Sasquatch discovery? Trips to the liquor store? This day, surely hasn't been weird enough?????

J
02-12-2013, 05:15 PM   #47
my little penguin
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Hugs...
Hope the Gi gets back to you soon.
More than once we have gotten the your kiddo is complicated " so I don't know what to do " drug wise speech .
Last time it was just strep.
Hope her "virus" leaves soon.
02-12-2013, 05:20 PM   #48
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Hey MLP & T - Just to add to the funhouse, pneumonia kid shouts from the xbox "Moooooo-oooooooooooommmmmmm can you check my temperature again?"

He's no longer afebrile. 101......

Gotta keep laughing......here's to complicated kids.

J
02-12-2013, 05:21 PM   #49
Crohn's Mom
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I vote for the liquor store !

And just wanted to tell ya - the first time Gab ever had pneumonia she had ZERO respiratory signs. I took her to the ped because she just wasn't feeling good, and kind of lethargic.
When I opened the car door to get her out she ended up vomiting in the parking lot.
Took the doc just a few minutes to tell me she had pneumonia! I was shocked :/
Hopefully the GI gets back to you soon and Claire doesn't get worse
02-12-2013, 08:58 PM   #50
Dexky
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Hey MLP & T - Just to add to the funhouse, pneumonia kid shouts from the xbox "Moooooo-oooooooooooommmmmmm can you check my temperature again?"
Probably didn't even miss a beat with his game, did he?

Wow, you guys are getting more than your share J! I hope C's problems are just some bug. Lord knows there's enough of 'em going around!
02-12-2013, 09:43 PM   #51
CarolinAlaska
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A white count of 15 isn't unusual with kids who are on prednisone. Were there a lot of lymphocytes or neutrophils? Maybe it was a reaction to the MTX? Hugs and prayers for both of you and your dear son too. I hope they both make a quick turnaround.
02-13-2013, 07:27 AM   #52
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Thanks Carol. Her 5 day "blast" is over but makes sense to me that it would still be elevated. The concern that started it all was the school called because she had a fever and when I say the child could barely put one foot in front of the other - Im not exaggerating. I hope this is a one time event and not how wiped she's going to be with the increased MTX dosage.

Last night she was still complaining that deep breäths hurt her abdomen and she can hardly stand for anyone to touch her belly. I don't get it.

I hope today is MUCH BETTER for everyone.

J.
02-13-2013, 11:14 AM   #53
CarolinAlaska
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Aw, J, that sounds terrible. Poor girl! I hope to day is much better too. Is she passing gas and pooping?
02-13-2013, 11:35 AM   #54
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Oh yes. The bowels are working just fine.
02-13-2013, 11:49 AM   #55
Tesscorm
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So sorry Claire's going through so much!

I hope today brings some relief and improvement!
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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
02-13-2013, 08:25 PM   #56
Crohn's Mom
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How are Claire and Hunter feeling today J ?
02-13-2013, 09:23 PM   #57
my little penguin
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Hugs hope she gets a break soon
02-13-2013, 09:44 PM   #58
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She's ba-ack! Literally! Like someone flipped a switch! Her joint pain is virtually nonexistent. Belly still tender but improved. Im so thankful!

Now - it will be interesting to see if we have a repeat with the next dose Friday. I will be happy for today!!!

Hunter's fever is gone, T. Still doi g a lot of coughing and having chest/back pain. Im praying Claire has no part of this pneumonia!!!!!

J.
02-13-2013, 09:46 PM   #59
Jmrogers4
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Glad she is feeling better!
: panda:
02-13-2013, 09:59 PM   #60
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Whew!!
Crisis (sorta) averted !


HD
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