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Crohn's Disease Forum » Parents of Kids with IBD » Youngest daughter in a flare


 
10-13-2016, 05:26 PM   #31
Clash
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Oh no so she didn't have cdiff? We haven't tried sulfasalazine although the rheumatologist brought it up and wanted to px it for his SpA.

I hope the new med helps! Hugs!
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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
10-13-2016, 05:30 PM   #32
my little penguin
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We asked about sulfanazine before for ds when he was Dx with JSpA
As well
Why would the doc stay in the same class of 5-ASA??
Why not 6-no or mtx prior to remicade
Sorry she is flaring
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10-14-2016, 01:55 PM   #33
Sascot
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Really sorry to hear that. Hope it works better than you're expecting
10-14-2016, 07:29 PM   #34
Maya142
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We were told the same about sulfasalazine - it's not a very strong drug. We tried it in combination with biologics + imuran and it didn't really help at all.

I would definitely ask about 6mp/ Imuran or MTX first, especially since her FC is so high. Seems kind of like a waste of time to mess with sulfasalazine when it's so similar to 5-ASA's and she has failed that. Was there any particular reason he chose sulfasalazine?
10-15-2016, 05:57 PM   #35
Farmwife
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Grace was on sulfasalazine along with methotrexate and Remicade. It didn't help her much until we switch the sulfasalazine out for an Imran.
I hope your girl gets better soon. And needs drugs start to help her.
Hugs to you both.
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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
10-16-2016, 05:43 PM   #36
kimmidwife
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The sulfaszaline they gave us is tablets. I am really upset as I expected caspules we could just open for her. She was very unhappy.
I am going to call Wednesday and speak with him and push for the LDN.
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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.
10-16-2016, 06:29 PM   #37
awmom
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Just catching up Kim....I am so sorry you your little one are going through all of this! I do hope you find a med that works fast....this waiting game is so difficult!! Sending warm wishes for a speedy solution.
10-16-2016, 07:05 PM   #38
Maya142
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I have never heard of capsules of Sulfasalazine Kim. You want the enteric coated Sulfasalazine - that is easier on the stomach BUT it is a big tablet. That is probably what your GI prescribed.

There are lots of tricks for pill swallowing that parents on here can suggest, if that might help?
10-16-2016, 08:29 PM   #39
my little penguin
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Yeah that ^^^^
Ds had to learn to swallow horse pills at age 7.
Were you opening the 5-asa as well ?

That can effect the over all effectiveness since the coating protects it to a certain part of the intestine depending on the disease location and brand

Still don't understand the push for LDN but not being willing to try 6-mp and mtx ...
10-18-2016, 07:46 PM   #40
kimmidwife
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MLP,
LDN is a very benign drug compared to a lot of the others that is why I am pushing to try it first. I tried every trick I know to get her to swallow pills and no success so far. Her doc said we could open the Apriso and the budesonide and to cut up the sulfaszaline.
She got a rash all over from the sulfaszaline so we will be calling the doctor tomorrow and pushing for the LDN. I am going to ask him to let us try it for six weeks and see if her fecal calprotectin decreases if it does not we will discuss remicade or maybe 6MP.
10-18-2016, 08:02 PM   #41
Maya142
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Kim, we were told Stevens Johnson syndrome can be associated with Sulfasalazine so to be very careful if they got a rash. I'd let your doctor know ASAP.

We report two cases of Stevens-Johnson syndrome (SJS) associated with the use of sulfasalazine in two ulcerative colitis patients previously tolerant to mesalamine. SJS and toxic epidermal necrolysis (TEN) are very rare adverse cutaneous reactions that can be associated with the use of sulfasalazine. The most severe cases can result in death, and for the others, permanent skin, mucosal or ocular sequelae, which can impair the quality of life in our young IBD patients. Clinicians and patients need to be aware of the signs and symptoms that often precede the appearance of the mucocutaneous lesions in a SJS or TEN, such as fever, influenza-like symptoms, sore throat or burning eyes. For patients with SJS or TEN, immediate withdrawal of the offending medication should be done when blisters or erosions appear in the course of a drug eruption, as this may improve the prognosis.
10-19-2016, 08:17 PM   #42
kimmidwife
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Called her doctor and as usual no call back.
They really need a full overhaul with their staff!
10-20-2016, 05:05 PM   #43
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We have a yes on the low dose naltrexone!!!!!!!
I am very happy. We are going to try it for six weeks and repeat a fecal calp. to see if the numbers start coming down.
10-26-2016, 08:47 AM   #44
kimmidwife
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Best tricks to get kids to swallow pills?
10-26-2016, 09:24 AM   #45
crohnsinct
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Just saw on a doctor's twitter post...wrap the pill in fondant. YUM! Icing covered medicine!
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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
10-26-2016, 10:08 AM   #46
my little penguin
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Oral flo cup
http://oralflo.com
10-26-2016, 10:14 AM   #47
my little penguin
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http://www.ccfa.org/resources/pill-s...echniques.html

http://www.ccfa.org/science-and-prof...e-medicine.pdf
10-26-2016, 10:15 AM   #48
my little penguin
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http://www.medscape.com/viewarticle/819000
10-26-2016, 10:16 AM   #49
my little penguin
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http://www.pillswallowing.com/basic.html
10-26-2016, 10:16 AM   #50
my little penguin
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10-26-2016, 10:29 AM   #51
my little penguin
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10-26-2016, 10:36 AM   #52
my little penguin
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http://www.bbc.com/news/health-25006956
10-26-2016, 12:27 PM   #53
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Pill chucking! Have her open wide and stick out her tongue. Toss that pill at the back. Follow with water.
10-26-2016, 07:00 PM   #54
kimmidwife
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I got her to take it. I fed her chocolate pudding and then put the pill in. She figured it was there and played around with it a little but after several more times she got it done. The good thing about the LDN pills is there are pretty small.
01-25-2017, 09:03 PM   #55
kimmidwife
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Had great news today, my younger daughter's fecal calprotectin dropped from just below 1000 to 275 after a little less then three months on LDN. Very happy with this news!!!
01-25-2017, 09:31 PM   #56
pdx
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That is great news. How is she feeling?
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
01-25-2017, 10:07 PM   #57
Maya142
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Great news!
01-25-2017, 11:41 PM   #58
Pilgrim
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Wow! That is so wonderful!
01-25-2017, 11:58 PM   #59
awmom
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OMG!!! That is fabulous news!! Hope she is feeling well!
01-26-2017, 03:21 PM   #60
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Great news Kim!!!
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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
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