12-14-2017, 08:19 PM   #61
Maya142
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I believe she has tried and failed both Humira and Remicade due to antibodies CIC.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-14-2017, 08:28 PM   #62
crohnsinct
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grr. I thought just Humira. Where did I put those darned reading glasses?

No joke, I have like 6 pairs and when I dropped of my high schooler she said, "make sure you do your brain games mom".

We wouldn't be so senile if it weren't for them!
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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
12-14-2017, 10:00 PM   #63
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She had both the upper and lower scopes done when she was hospitalized in August. I don't understand why they would need more scopes since those were fairly recent. I think the dr we are seeing is Densen?? Anyone familiar with him? I told hubby what you all advised about the flex sig & he is on board with refusing that.

I also talked to him about why the G tube is important--stating the risks of ongoing steroid use & how meds & pre procedure meds would be easier with that along with the benefits of formula for growth & nutrition. I told him he could read your posts & learn more. I will make them available so he can get educated before we go. I think he is nervous b/c it is still a surgery & that worries him.

We haven't heard anything about the stelara--I will check on the status tomorrow. CIC--she has been on remicade & Humira but developed antibodies to both unfortunately. 😥


We also meet with colorectal surgery in Cincy-- is that normal? I wish I could be an ostrich with my head in the sand & stay blissfully ignorant.
12-14-2017, 10:29 PM   #64
Maya142
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We haven't met a colorectal surgeon at second opinion appts. but I think if they are seriously considering surgery for your kiddo, then it is probably important.

For scopes, all doctors like to "see" for themselves how much inflammation there and how much scarring/damage there is.

For G tubes - any questions you or your husband or even your daughter has, let us know! M can tell your daughter what the surgery felt like - the worst part etc. There are a few teenagers on here who have had it more recently - Kimmidwife's daughter and Clash's son - and they can probably tell you more accurate info.

I always figure formula can't hurt and if you have a kid with severe disease, it can only help. If you do EEN it could induce remission, and if you do supplemental EN it will still help with growth and gaining weight and development. It also really helped my daughter just feel a whole lot better - being malnourished just makes you feel crummy.

When you're at Cincy, any chance you can see a psychologist who specializes in GI kids there?
12-15-2017, 12:28 PM   #65
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ok this is probably a dumb question but how do I word the e-mail to Cincy & tell them I don't want the flex sig? Just explain that we just had scopes done in August?? Or just ask them to change it to scopes? I was telling hubby about it last night & he doesn't want her to have to go thru all that again unless it is absolutely necessary.

I don't know about seeing a psychologist but I guess it doesn't hurt to ask.
12-15-2017, 01:45 PM   #66
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Ask if they are necessary, given she had scopes in August. And say that if they are necessary, you would prefer that they did a full colonoscopy because at her last scopes she had disease in her terminal ileum/cecum or her whole colon (I can't remember which one is true for your kiddo).

Sometimes it helps to phrase it as a question instead of a demand. You could just ask why a flex sig vs. colonoscopy considering they are putting her out anyway for the endoscopy AND she has had inflammation in her terminal ileum before.

You can even saying something like "Considering my daughter had inflammation in her TI in August, would a flex sig really be useful? Doesn't a full colonoscopy make more sense, given that we were sedating her anyway?"

Generally the advantage of a flex sig is that the prep is "easier" - enemas usually and no liquid diet necessary (not sure if enemas are easier for kids, which is why I put it in quotes) and no sedation required (but again, for kids it is done with sedation, as far as I know). So basically, there is no real advantage to a flex sig.
12-15-2017, 03:23 PM   #67
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thanks Maya142--you are so very helpful.
as of right now, they have her scheduled for an MRE the first day, flex sig the next & an endocrinology appt, gastroenterology appt & colorectal surgery appt the last day. I appreciate them being thorough but hate for her to have to go thru a repeat of tests she had recently; plus who knows when they will schedule the G tube & if the Stelara will ever get approved. That is what I am going to ask Santa for for Christmas--all I want is to get some Stelara for my baby. I am rambling......
12-18-2017, 03:46 PM   #68
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this is the response that I am getting from Cincy when I asked if the sig flex is necessary since she had scopes in August.
"This test is to do a viral PCR for CMV that was not done at Vanderbilt, so it would be a new test. If you need clarification or more information I am happy to have a nurse give you a call."
Now what?
12-18-2017, 04:04 PM   #69
my little penguin
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Definitely have the nurse call you
They can check for cmv
Most do nasal swabs or swabs of ulcers
I guess innher case ulcers in the sigmoid colon
But still i would wantbto know more

But if itís infection they are concerned with
Why steriods and tacro ?
Someone isnít saying something
Thatís very weird
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12-18-2017, 04:05 PM   #70
my little penguin
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Has she seen infectious disease ?
12-18-2017, 07:31 PM   #71
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This is part of her itinerary for our upcoming second opinion visit to Cincinnati in late January. We haven't seen a infectious disease dr since she was first dx'd in 2016.
12-18-2017, 07:52 PM   #72
Maya142
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I would talk to the nurse and lay out your concerns - a flex sig won't look at her whole colon or TI and she has disease there. And if you're going to put her out anyway, why not just do a proper colonscopy and get a good look at everything?

I would also find out more about the CMV test and why they're doing it.
12-18-2017, 08:01 PM   #73
my little penguin
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I know others who they thought had super bugs including cmv
So they cultured the ulcers
But those were in the mouth
The results were negative btw

At one point GI looked at cmv for ds
Again negative but never pcr on colonic tissue
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