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Crohn's Disease Forum » Parents of Kids with IBD » Much Ado About Nothing! eh!


 
11-26-2013, 01:37 PM   #1801
Mehita
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Thanks you guys! They're going to be so excited.
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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
11-26-2013, 03:16 PM   #1802
crohnsinct
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LMAO! O just came home from school and for art she says she needs to bring in a kitchen gadget/tool that I could live without for weeks. Help yourself to whatever you want JUST NOT THE WINE OPENER!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
11-26-2013, 06:14 PM   #1803
Tesscorm
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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
11-26-2013, 07:40 PM   #1804
my little penguin
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Just not the take out menus or phone right
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DS - -Crohn's -Stelara -mtx-IVIG
11-27-2013, 10:54 PM   #1805
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All in the name of health...

Holiday Workout.jpg
11-29-2013, 09:50 PM   #1806
crohnsinct
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Attachment 2291
Attached Images
File Type: jpg IMG_4774.jpg (67.3 KB, 56 views)

Last edited by DustyKat; 12-06-2013 at 04:41 AM.
11-29-2013, 09:52 PM   #1807
crohnsinct
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Sorry that^ came out so large. Maybe one of our multi talented monitors can resize it for me.

So last night at Thanksgiving dinner O ate an olive in her salad and announced, "oops! I swallowed the pit" and laughed her fool head off.

Anyone wanna guess what went through my head?!
11-29-2013, 09:57 PM   #1808
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Isn't it amazing how it takes next to nothing to panic us?!?!? Hope nothing comes of it!!!
11-29-2013, 10:03 PM   #1809
crohnsinct
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Well since it was Thanksgiving and my brother had been plying me with wine all day (it's always some one else's fault) I wouldn't exactly say panic but I am waiting for the first few BM's to prove it isn't stuck in there somewhere and did stop drinking in case I had to drive to the ER.
12-02-2013, 10:47 PM   #1810
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So my youngest child has had issues with blood in her poop on and off. Right now the GI has us keeping an eye on it since all her tests including fecal calprotectin have been normal. But anyway we are always checking her poop for blood. Tonight she tells me I think there is blood Mommy get the flashlight. I run and get the flashlight and I said I don't see any blood sweety. She says I don't see any either Mommy but look there's a hidden Mickey!!!!!
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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.
12-03-2013, 09:59 AM   #1811
Mehita
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Head cold + airplane this Saturday = not good!

Load me up with your quick fix home remedies, please. I'm already doing hot tea, honey & cinnamon spoons, and neti pot. No meds yet.

What else?
12-03-2013, 10:12 AM   #1812
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Don't know if you get it there, but I have managed to stop 2colds with Vicks First Defence nose spray. Start it within 48 hrs of a cold and continue for 2 days after you feel a bit better. Burns a lot, but works for me.
12-03-2013, 10:40 AM   #1813
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To help just for a short time, I would also take a decongestant nasal spray to use 20-30 minutes before flight... I normally use Otrivin. (This might be the same as Sascot's Vick's suggestion??)
12-03-2013, 11:01 AM   #1814
crohnsinct
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Oil of Wild Oregano...two drops under the tongue every morning. Knocks it right out. As a preventative it is great at warding off all kinds of thinga also.

I like the Boiron family of products...Cold Calm or oscillo.

Feel better!
12-03-2013, 11:35 AM   #1815
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Be careful with neti pots. There is an issue with them. I can't remember at the moment exactly what it is an not home so can't look it up right now but I remember it was something serious.
12-03-2013, 02:32 PM   #1816
Mehita
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Oooo... I do have Cold Calm here.

Neti Pots - just need to know your water
http://well.blogs.nytimes.com/2012/0...-warning/?_r=0
12-03-2013, 02:42 PM   #1817
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Ok glad you knew.
12-03-2013, 04:55 PM   #1818
Mehita
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I remember when that came out. The news made it sound like the world was ending when it was only two cases. Well, two cases that are known. Can you imagine? One day you're using a neti and the next you're crazy sick. Those poor people.
12-06-2013, 10:13 AM   #1819
Mehita
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The I-35W bridge over the Mississippi River was lit up in orange and blue this morning in honor of Crohn's and Colitis Awareness week. Made me a little teary eyed. Sounds odd, but this bridge and the river have been such a part of my life...

Not sure how to post a photo, but in Facebook you can search for the CCFA Minnesota page.
12-06-2013, 01:57 PM   #1820
crohnsinct
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LMAO O was looking over my shoulder while I was reading the forum. Dancemom's sig came up and next to starting Methotrexate was the little cheerleader. O says, "why would someone put a cheerleader next to Methotrexate?"

I guess I could have gone with, "well darling it is because we are all mommies and it tears us up when our darlings are hurting and ill so if starting a drug will give you a little relief we are thankful for that"

But I opted for, "oh this is not really a Crohns forum...it is a cult of parent's intent on punishing their children for all their wrongs by using awful drugs"

Yeah I got the teenage eyeroll.
12-06-2013, 02:41 PM   #1821
DanceMom
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Haha! Yes, because secretly I've always wanted to inject evil toxins into my children and now my dream is finally coming true! WooHoo! lol
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
12-06-2013, 07:06 PM   #1822
my little penguin
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now that is a "dancing poo" is really needed when you want to go with insanity like a biologic
so your kiddo doesn't look like this


are just for the toxic stuff like methotrexate.
12-09-2013, 01:34 PM   #1823
crohnsinct
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So O has her first really bad cold since dx. Just took her to ped and ear infection. Ped prescribes Amoxicillin...this after we went over all her current meds mind you.

Pick up script (which was happily filled by pharmacist) and here is the warning:

Methotrexate/Penicillins

This information is generalized and not intended as specific medical advice. Consult your healthcare professional before taking or discontinuing any drug or commencing any course of treatment.

Medical warning:

Serious. These medicines may interact and cause very harmful effects. Contact your healthcare professional (e.g. doctor or pharmacist) for more information.

How the interaction occurs:

Penicillin antibiotics may decrease the ability of your kidneys to remove methotrexate from your body.

What might happen:

The levels of methotrexate in your body may increase and cause serious. possibly life-threatening, side effects.

What you should do about this interaction:

Let your healthcare professionals (e.g. doctor or pharmacist) know that you are taking these medicines together. Your doctor may want to monitor the amount of methotrexate in your blood, change the dose of your methotrexate, or change your antibiotic. Let your doctor know right away if you develop nausea, stomach pain, yellowing of the eyes or skin, dark urine, fever, fatigue, a persistent sore throat, easy bruising or bleeding, black stools, a change in the amount of urine you pass, skin rash, breathing problems, dry cough, diarrhea, or mouth sores while taking these medicines together or after finishing taking these medicine together.Your healthcare professionals may already be aware of this interaction and may be monitoring you for it. Do not start, stop, or change the dosage of any medicine before checking with them first.

So for starters, really?! Why do we have to police everything? I mean it could be nothing and just one of those CYA warnings but then shouldn't doc have said, "you will see this warning and it is fine don't worry"

And really? If I notice nausea, stomach pain, fatigue, mouth sores, diarrhea call the doc? Did I mention she has IBD?

Fever or dry cough...um yeah...already has those.

Too funny. Oh well, GI nurse hasn't heard from me in a month so she probably misses me terribly.
12-09-2013, 01:38 PM   #1824
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A whole month of not hearing from you......................oh that poor nurse.



That's why is important to read the warning everyone.
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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
12-09-2013, 01:47 PM   #1825
crohnsinct
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And they wonder why all Crohn's moms are crazy
12-09-2013, 01:53 PM   #1826
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That is frightening! Actually it is the pharmacist who should have said something. As much as pediatricians try to stay on top of stuff like this the pharmacists are the ones who study drug interactions and nowadays the computer should have been able to alert th pharmacist about a possible interaction between these two medications. Did you get it filled at the same pharmacy where she gets the methotrexate from? That is why it is so important to make sure your pharmacist know all medications you are taking.
12-09-2013, 01:58 PM   #1827
crohnsinct
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Kim: YES! Same pharmacy! I am sure it is a big ole nothing BUT someone should have said oh yeah see this...don't worry. Now I have to waste my time tracking down the o.k. from the GI who right about now is the only person I trust anymore.
12-09-2013, 02:00 PM   #1828
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Yes I agree with kimmidwife. When Jack was on Imuran and we added allipurinol the pharmacist was up in arms when I went to go pick up the alipurinol saying he can't take these together.
After our adventure with antibiotics and c-diff over the summer I told Jack's GI I was not giving him antibiotics anymore unless he okay'd them. He just laughed and said yes, you should probably call me before giving him anything. Although if he ped rx'd it I probably wouldn't worry since he has UC and always checks drug interaction.
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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
12-09-2013, 02:10 PM   #1829
crohnsinct
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Maybe I should switch to the local pharmacy dude and not the chain pharmacy that is open 24 hours and has a drive through for convenience.
12-09-2013, 02:17 PM   #1830
Tesscorm
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And they wonder why all Crohn's moms are crazy
YES!!!!!! We don't start out this way, it's them who make us crazy!!

but, hope the GI gets back to you quickly so you can get on with her treatment
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