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Crohn's Disease Forum » Parents of Kids with IBD » OK, so, getting to the end of our rope, perspective needed.


 
12-28-2012, 01:11 PM   #61
Tesscorm
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Good luck Muppet!! I hope you come out of the apptmt with a solid plan!
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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
12-28-2012, 02:51 PM   #62
muppet
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Sarah is pretty ticked at me right now for pushing the EN over prednisone plan.
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12-28-2012, 08:37 PM   #63
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Sounds like a solid plan!! Good luck!
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
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12-28-2012, 09:06 PM   #64
killcolitis
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Good luck! That's a good list I think. I don't think (from experience) he will go for EN but then you can always push more than we did. We decided to try out of pocket since none of the GIs would rx it and it was really expensive. And it did not work.
I hope you come up with a solid plan next week.
12-28-2012, 09:18 PM   #65
my little penguin
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Just be fore warned - Gi may come back with
Current literature/studies did not show improvement or induced remission for colonic disease ( uc) when using EEN.
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12-28-2012, 09:23 PM   #66
izzi'smom
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If need be, the yawkey inn offers free housing on a limited basis. If they have no rooms available, they have a number for another place.
We stayed in a hotel twice...it was crazy expensive (plus her dad and I got two rooms as we are not together).
Wishing it goes well...

http://www.yawkeyfamilyinn.org/
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
12-28-2012, 09:44 PM   #67
muppet
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Just be fore warned - Gi may come back with
Current literature/studies did not show improvement or induced remission for colonic disease ( uc) when using EEN.
I've only just begun looking up abstracts on this. If the literature doesn't support it then it may be a non-starter, but I've always been a big believer in bowel rest and it worked for me as a kid when my diagnosis was UC (but we know how that turned out.)
12-28-2012, 10:00 PM   #68
muppet
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And of course I don't believe she has UC. I think it's CD. Dr. B isn't impressed by my intuition.
12-29-2012, 08:39 AM   #69
crohnsinct
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Just be fore warned - Gi may come back with
Current literature/studies did not show improvement or induced remission for colonic disease ( uc) when using EEN.
O has CD only in colon (I wonder if it is really UC and months later did say he found inflammation in stomach and rectum but still not sure if that meant - disease or just plain old inflammation) and her doc said there was a good amount of new literature showing that it is effective for colonic disease. I don't know if that meant colonic Crohns only or if that would apply to UC BUT it worked for O and it worked for her friend with UC. I say there is no harm in trying right? Well except for a delay in starting a treatment that would work but I would think you would see some kind of results within two or so weeks and then can evaluate.
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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
12-29-2012, 09:26 AM   #70
my little penguin
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CIC - I am with you in trying EEN just wanted muppet to be prepared with literature references since the older papers all state the same no improvement .
That will give him the best shot at convincing the doc kwim
12-29-2012, 09:51 AM   #71
killcolitis
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Crohnsinct - Do you have any links which show efficacy for colonic disease? I'm asking because my daughter has UC, her doc uses EEN as a first line treatment for small bowel/upper CD. She has refused our many requests to try it for my daughter (it really doesn't work for UC from everything I've read, including the book Beat Crohns which is very well referenced). Like muppet, we wanted to try it on the off chance that she actually does have cd (Dr B said no to us too by the way).
She refused for the reasons stated (does not work in her clinical experience and makes things worse often, no research backing it etc). We've tried several formulas over the years on our own and they all have actually made her worse. I want to try (again) for tube feeding (she is completely against) and would love to show her some compelling research (though she is a top pediatric doc and doesn't appreciate this type of thing we are truly running out of options before surgery). I've looked on pubmed and can't find anything much.
It's great that it worked for your daughter and that her GI was open to it.
12-29-2012, 09:53 AM   #72
Johnnysmom
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Is there are certain age or number of years after diagnosis when they become more confident of the UC diagnosis?
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Dx Oct 11 2011 Crohns disease
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12-29-2012, 11:44 AM   #73
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Muppet,

How is her height and weight for her age?

Any extraintestinal manifestations?

When you say she is starting to flare, what are her exact symptoms?

Have you ever tried any dietary changes with her?

Why is the doctor pushing colectomy? Does he feel there is a danger or is her quality of life low?

Are you willing to try experimental treatments that have a very good safety record?
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12-29-2012, 11:49 AM   #74
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The only thing I was going to add was a comment on MTX injection vs pills. Due to the absorption issues with IBD patients and the time it takes to determine if it is going to be therapeutic, our doc said the injection route was preferred.

I know you may not even be faced with that choice but wanted you to have that info.

Julie
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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
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No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
12-29-2012, 12:01 PM   #75
my little penguin
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^^^ yeah that
That was why DS did injections
12-29-2012, 12:20 PM   #76
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Yeah, I agree with MLP and AZMOM, our doc did mention this about the injection too. We opted for the the MTX pill. Also, the side efects of nausea, flu-like ickiness is more prevalent with the pills. C hasn't experienced any reactions like that at all but others on here have. C responded really well to the MTX, he hasn't had any CD symptoms since starting MTX with his Remicade but I haven't read alot of posts about members that have responded as well as he has.
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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
12-29-2012, 12:21 PM   #77
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Muppet,

How is her height and weight for her age?
She's a monster. Definitely not underweight or failing to thrive. Like me she tends to gain on Prednisone (with one exception where it failed to reverse a flare which led to our failed Remi trial).

Any extraintestinal manifestations?
Too many to count. She has pain in nearly every area of her body, most notably and often her shoulders, hips, and ankles. Her complexion is almost always grey and terrible, but this may be down to being chronically dehydrated (something I wonder if EEN might address, and I'm interested to see how/if her joint pain would be affected by EEN.) The truly intense joint pains, especially the upper body ones, started after the serum reaction to Remicade and have never stopped. One of the symptoms of her reaction was that her shoulders and hips became immobilized by pain. She's never been quite that acute since, but the pain is still there intermittently, but the specialists both GI and Rheumatologist insist that it can't be a lasting effect of the Remicade.

When you say she is starting to flare, what are her exact symptoms?
Abdominal pain and cramping (possibly masked by menstruation last week, but still continuing this week) and bleeding. Mucous on/in the stool. Her stool isn't soft or narrow, though. It's an unusual stool quality for her (but I'm relying on her self reporting.)

Have you ever tried any dietary changes with her?
Low residue, no dairy, and we stay away from fast food (although we still rely on it maybe twice a month, as things get very hectic around here.)

Why is the doctor pushing colectomy? Does he feel there is a danger or is her quality of life low?
The previous practice in Hartford was unimpressed by the quality and stability of her remissions on 6MP and she failed 5-ASA and eventually Remicade. They always told me it would either be Remicade or colectomy for her. 3 years ago we were told to choose one or the other when she was inpatient and not responding to Solumedrol and had received two transfusions due to heavy bleeding.

The new practice hasn't pushed colectomy yet but I think it's in the cards. Dr. B says our 6MP/Allopurinol regimen is "turning carthweels to get things to work" and he doesn't seem impressed with non-approved therapies generally.

Are you willing to try experimental treatments that have a very good safety record?
We have broached all sorts of things with both old and new GI like helminthic therapy, fecal transplant, stem cell trial, all with very poor reception on their part. I'm willing but not without the support of an amenable GI to keep an eye on things.
12-29-2012, 12:32 PM   #78
muppet
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Is there are certain age or number of years after diagnosis when they become more confident of the UC diagnosis?
I don't know about that but my diagnosis changed from UC to CD after 20 years.
12-29-2012, 01:01 PM   #79
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Muppet

I couldn't find anything in the recent literature that supported EEN as primary therapy for ulcerative colitis. I actually was unable to find any studies in which it was studied in UC. Seems that it's only used to support nutrition in people with severe UC.

Does your daughter's doctor use blood tests (e.g. Prometheus) to help distinguish UC from Crohn's?
12-29-2012, 01:23 PM   #80
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When she had the reaction to Remicade, was there any lung involvement?
12-29-2012, 01:39 PM   #81
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David - None that was obvious.

xmdmom - Sarah did have a result on a Prometheus test that showed potential CD indicators. I don't remember the details. Dr. B feels the test is not reliable for discerning the two, or didn't at the time.
12-29-2012, 04:02 PM   #82
izzi'smom
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Our doc isn'r a fan of Promethus testing either.
I am also frustrated by the lack of interest in stem cell transplantation. Izz isn't sick enough to qualify for the trials, nor has she failed all of the meds required, but I believe it is a promising angle. I was concerned about the potential sterilization until I talked to a friend with UC who had trouble conceiving until doing in vitro...he said the lesser of the two evils is infertility (2 children-1 adopted, 1 in vitro) <3
12-29-2012, 04:19 PM   #83
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I know you are going to discuss imaging with the doc and he says he is confident in his diagnosis of UC but when push comes to shove this isn't his daughter. I don't think it is at all unreasonable given your history and the prospect of Sarah facing a total colectomy that you are reassured that the diagnosis is UC. I would want all bases covered and request both an MRE and pill cam. They each have their own advantages.

Good luck with the consult!

Dusty. xxx
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12-29-2012, 09:41 PM   #84
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I agree with dusty that you need some good imaging before making any decisions definitly push for it!
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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.
12-29-2012, 11:22 PM   #85
crohnsinct
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killcolitis: I was basicaly going by what our doc said but I do remember frantically looking around for supporting documentation and found something. I want to say it was on here but I would be lying if I said I was sure it was here. I am visiting family but will look for it when I get a chance because I know I am not nucking futs! I DID see it!
12-30-2012, 01:26 AM   #86
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Literature that I have seen still supports the theory that EEN is not effective for UC but when it comes to CD the consensus has shifted somewhat from it being primarily used for small bowel disease and is now often suggested that it be used regardless of location. As stated in the summary of this article:

http://www.naspghan.org/user-assets/Documents/pdf/PositionPapers/Use_of_Enteral_Nutrition_for_the_Control_of.29[1].pdf

...there is a paragraph that discusses location of disease and conflicting evidence regarding its effect on colonic disease.

Dusty. xxx
12-30-2012, 12:16 PM   #87
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Tess,
Cimzia is not yet approved for children in the US. They are working on approval from what I understand.
12-30-2012, 12:20 PM   #88
my little penguin
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^^^^ yeah that
Cchmc ( Cincy) has a pediatric trial going on now
01-01-2013, 06:01 PM   #89
crohnsinct
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Dusty: That looks like the paper I read supporting using EN for colonic disease but like I said before, I am not sure if the colonic involvement and response to EN would be different for a CD patient than a UC patient. All that said, we do have a friend who has a daughter being treated at Yale Children's Hospital and they got their doc to agree to use it around the same time we did and she responded remarkably well. She was on Prednisone and Remicade and since EN just uses Pentasa.
01-03-2013, 09:27 AM   #90
muppet
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Except for the one linked here, I've found nothing to support EEN with UC. Still, I'm going to push the issue as I think it's worth a try before we get into the "surgery is all that's left" area. If nothing else it might help cement her UC diagnosis, right?

I've decided that using the trains will double our travel time, so I'm going to drive straight into Lexington and pray for parking when we get there.
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