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


 
12-27-2012, 09:20 AM   #31
muppet
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I've always strongly been for exhausting all the drug options before allowing surgery, and felt the same way about Remicade, but I've also watched Sarah suffer and be hospitalized and receive blood transfusions and be the subject of parades of medical students because of how "interesting" she is and I have to admit that if the new GI starts pushing for colectomy as a definitive resolution to this nightmare then I'll be very tempted to forget about the remaining 4 or 5 new "maybe" drugs that are out there.
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12-27-2012, 09:26 AM   #32
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Yes, we've been very lucky in that Stephen hasn't had to endure severe symptoms, etc. but I can imagine how heartwrenching it would be to see your child suffer and then to ask them to take on more challenges! Lots of hugs, not easy choices to make!
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12-27-2012, 09:29 AM   #33
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I think there was one other person on here who's daughter was approved to try Cimzia (Kimmidwife ? Caitylyns mom) is who first comes to mind.

As far as I know tho, Cimzia is not FDA approved for anyone under 18 yet.
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12-27-2012, 09:31 AM   #34
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I've been doing my own Crohn's thing for 29 years now, and Sarah's for 11. When I was first diagnosed I was too young to be scared and by the time I was old enough to understand why I should be scared, it was too familiar to be scared of. Crohn's generally has never scared me as I've always managed to pull something out and get things "normal" again, but in the past couple of years Sarah's disease has been damned stubborn about not going away and my formerly well-stocked confidence is getting really thin. I have to finally admit that she's been on Prednisone far too often in the last 3 years, and things just aren't where they ought to be at all.
12-27-2012, 09:48 AM   #35
my little penguin
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Cimzia is not approved for pediatric use yet.
There are on going pediatric trials at cchmc.
I believe for crohn's only but I could be wrong
Good luck with the Gi discussions
Never easy
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12-27-2012, 09:52 AM   #36
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Methotrexate hasn't been strongly studied for UC yet, it seems.

http://www.ncbi.nlm.nih.gov/pubmed/20186931

I'm looking for something more recent. I'm able to get some limited journal access through my school account at NVCC but no very good ones. I'm limited mostly to abstracts.
12-27-2012, 10:03 AM   #37
izzi'smom
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Muppet, if you are going to Boston Childrens, I would ask about Tacro. THat's who put us on it (We saw Dr. Essers before he moved to Seattle and Dr. Zitomerski, plus the surgeon, Dr. Linden). There isn't a ton of great info on it but there are some studies, and the physician that put her on it told us it is regularly used in Boston. THere is also an adult on this forum that uses it.
We struggled with Crohns vs UC as well, especially pre-surgically. (Izz presents as UC but a granuloma was found.) ID even tested her for some obscure things for us just in case.
Expecially with Crohn's, but also potentially with UC, I have an intense fear that the surgery will just buy time, like all of the other drugs. I would be fearful that she would be better for a while and then start having Crohn's related issues again, and where would I be THEN? Unable to reverse it. Which is why, for me, I would much rather wait and try every drug available.
I'm not sure if it has been great for UC as well, but there are peds clinical trials dealing with stem cell transplant right now. Izz doesn't score high enough on the CDAI index to count, but it's an option at the back of my mind.
Wishing this were easier for you...
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12-27-2012, 10:48 AM   #38
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We're going to Children's Hospital Boston on the 3rd but to the Lexington office for GI which I've never been to before, and we're probably bringing Izzy (she never tolerates 30 minutes in the car, so 90 ought to be interesting) since my wife is working.

Hopefully there's a garage out there or something. I don't even know the name of the building out there and the website doesn't give one so I guess maybe it's just CHB at Lexington.

I wish I wasn't so clueless about public transit, we don't have such animals in CT. I know how to use the Green Line and that's it. Apparently you can get to CHB in Lexington on the Red Line and then transfer to the #62 bus (how you tell which bus is the 62 I have no idea, I guess on the little LCD screen thinger?) to go to the front door of the building, which I'll have to recognize from the crowded bus window despite never having seen it before. Oy.

When we go to the main CHB campus I just drive straight into Longwood and park in the garage.
12-27-2012, 10:54 AM   #39
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Sorry I don't have much advice to give. Just wanted to send my best - hope the appointment goes well. I would second the EN - Andrew has done really well since he did the 8 weeks exclusive liquid diet. Might be something that could just push her into healing enough for the drugs to maintain.
12-27-2012, 03:01 PM   #40
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Hey muppet,

One day in the garden doing hard labour and I miss all this!

I have to be honest and say that I only skimmed over all the responses so only going on your original post...

If it were me I would have upper and lower scopes done. Then an MRE to visualise the small bowel and if need be a pill cam. You need to establish what is happening before you can move to the next step of deciding if treatment needs to be altered, whether that be tweaking or change of meds or heaven forbid surgery.
Silly as it seems have them also do a thorough palpation of her abdomen, a pair of good hands can pick up issues that way too.

Dusty. xxx
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12-27-2012, 03:46 PM   #41
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I'm on board with all the imaging, but I'm not sure if Dr. B will be. I'm glad people brought up Tacro and MTX because I wasn't even considering them. LDN will be mentioned at our appointment again but I'm expecting it to be quickly poo-poo'ed.
12-27-2012, 03:51 PM   #42
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Why won't the doc be on board with it?
12-27-2012, 03:52 PM   #43
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Imaging I mean.
12-27-2012, 03:57 PM   #44
izzi'smom
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We're going to Children's Hospital Boston on the 3rd but to the Lexington office for GI which I've never been to before, and we're probably bringing Izzy (she never tolerates 30 minutes in the car, so 90 ought to be interesting) since my wife is working.

Hopefully there's a garage out there or something. I don't even know the name of the building out there and the website doesn't give one so I guess maybe it's just CHB at Lexington.

I wish I wasn't so clueless about public transit, we don't have such animals in CT. I know how to use the Green Line and that's it. Apparently you can get to CHB in Lexington on the Red Line and then transfer to the #62 bus (how you tell which bus is the 62 I have no idea, I guess on the little LCD screen thinger?) to go to the front door of the building, which I'll have to recognize from the crowded bus window despite never having seen it before. Oy.

When we go to the main CHB campus I just drive straight into Longwood and park in the garage.
We stay right at the hotel on Longwood, as I have a bad time with public transport. We stayed for 3 days last year, and not once did we get off the green line back at the hotel. We walked three miles one day after getting off (good thing for strollers for the kids lol...the first mile and a half were in the wrong direction and the hotel was two blocks from where we got off the bus lol!!) Good luck with Izzy in the car...mine were cooped up for 6 hours in the car and we had 2 appointments back to back when we got there...ugh. Not my best day for sure!
12-27-2012, 04:07 PM   #45
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Hi Muppet,
Caitlyns previous doctor before we moved to florida tried to push cimzia on us. I did the research before hand it said not approved yet for pediatric use. When I brought this up he poo poo'ed it and said it is fine. I decided no and when I brought up LDN he also poo pooed it but I walked in there and said listen this is my child and this is what I want to try and write me the scrip and he did.
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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.
12-27-2012, 04:14 PM   #46
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Sorry to butt in but I have a few thoughts. I have a child dxed with UC at age three two and also without remission. I actually want surgery but like you fear the CD dx post colectomy. Just wanted to chime in as we've had a second opinion from Dr B at Boston as well. He doesn't really hold much hope in mtx but I think he said it was worth a shot (this is for UC). We decided against it as my daughter was previously treated by the team of docs in Italy who published that UC/MTX study. They felt it was a long shot for her since they believe it works for some but not very well long term. If it's actually CD though it might be worth it if you're trying to avoid surgery at all costs.
Would you consider a fecal transplant? I ask because Boston Children's has approval to do this by scope for UC on an experimental basis. My daughter was supposed to be the second child to have this done there but she was too unstable to travel (we don't live in the US) so we didn't go through with it. It was Dr B who arranged it - it might be something else to keep in mind?
12-27-2012, 07:18 PM   #47
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Why won't the doc be on board with it?
He seems very confident in the UC diagnosis and I think he might find it overkill. He's a very conservative doctor.

Angie - Thankfully it's only about a 90 minute to 2 hour drive for us to Boston and so far we haven't had to stay. I don't think we could afford it. Although in the future it might be nice to make scheduled appointments into little mini sight seeing trips and hit some museums or something. I really enjoy some of the stuff in the food court at Faneuil Hall.

I may drive all the way to save time, but if Izzy ends up going I may use the T because the novelty of being on a "train" might sell the whole trip and keep the peace.

killcolitis - thanks for the insight, I may talk to Dr. B about a fecal transplant for some symptom relief for Sarah.
12-28-2012, 06:12 AM   #48
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If it's been 5 years since the last images, surely you could convince him it's time for scopes. I'd be very uncomfortable throwing this or that at it without certainty of what you're dealing with.
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12-28-2012, 07:06 AM   #49
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Oh there's no doubt of the need for scopes. I dunno if we'll get a pill cam or MRE but will definitely be talking about both.
12-28-2012, 09:14 AM   #50
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Wife (Chris) has swapped her nursing shift on the 3rd so that Izzy can stay home. I guess that's best in terms of giving my full attention to Sarah and Dr. B, but I was sort of hoping to use the long car ride as sort of a "training" exercise to get Izzy used to the idea of more significant disruptions in her routine.

Oh well, there will be other, better chances for that. We brought the kids to Mystic for a whole day over the summer and Izzy tolerated that spectacularly.

I think Dr. B considers things like LDN exotic and untested and therefore not good medicine (yet) but I really don't have a great read on him yet as we've just started with him. We were seeing Dr. Leichtner, who was my childhood GI, but he's off on sabbatical and who knows if he's coming back as he's got to be nearing retirement. I suspect he'll think a pill cam isn't warranted either but should I press for it? It's pretty much a roll of the dice whether it'll be any more informative than an MRE, isn't it?
12-28-2012, 10:05 AM   #51
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From our experience and that of friends whose children have been treated by Dr B he's fairly open to alternative treatments and understands that parents have the same goal as he does, which is to get their child healthy. He has said this to us several times and to a friend whose daughter he diagnosed with the worst case of uc he'd ever seen. She went to two years of treatments (meds and alternative) before having her colon removed, which was his initial recommendation for her. He supported her parents in trying alternatives. That said, I don't know if he would consider rxing LDN (likely not) but then, as I mentioned, he will consider (or did last year) FT so it may be possible. Good luck - I do think he's a very good doc and we've seen quite at this point.
12-28-2012, 10:07 AM   #52
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killcolitis - haven't seen you around, just hoping that your daughter is doing alright!
12-28-2012, 10:10 AM   #53
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Thanks Tess. Stephen too. She's flaring. I'm "here" I suppose - still scrambling and trying to figure things out...Thanks for asking!
12-28-2012, 10:11 AM   #54
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When I talked to Dr. B about continuing Sarah on 6MP by adding allopurinol to prevent her liver toxicity issue, he described the protocol as "turning cartwheels to get things to work", so I dunno...

We DID end up doing it, and it worked... OK, but not perfect. That's what we're on now.
12-28-2012, 10:17 AM   #55
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Muppet, our GI is a colleague of Dr B's and she said the same thing. My daughter's liver enzymes where 10 times the top limit on 6mp and she's allergic to imuran but the doc didn't want to add the allupurinol. That's not really an "alternative" treatment though I suppose? It's not worth the risk in the case of UC they believe.
12-28-2012, 10:20 AM   #56
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Sarah has no allergy to 6MP (although she seemed to develop "chronic" ITP concurrent with starting Imuran) and the allopurinol protocol works very well for her in terms of controlling the "bad" metabolite. I don't really consider it alternative, but Dr. B seemed to think it was on the edge of good medicine. In any case we'll get to talk to the man himself in less than a week.
12-28-2012, 10:55 AM   #57
my little penguin
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Good luck next week .
DS was on Allopurinol + 6-mp due to liver toxicity
But we could never increase the dose to therapeutic levels without more liver issues ...,
Hope the Gi appt brings about a good plan.
I don't think you can discuss meds until you know what those insides look like.
And not looking just because they believe its uc shouldn't be the reason.
Before DS scope last year the Gi believed it was EoE and or allergic colitis .
Looking every where is what got us the dx .
12-28-2012, 11:02 AM   #58
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I guess protocols are changing because in 11 years she's never had an upper endoscopy or any radiology of her abdomen that I can remember, but it's definitely on my checklist for next Thursday.

Sarah is therapeutic on 6MP according to her Prometheus tests. One concern with the continued use of those meds is that the local UMass lab that does her Prometheus test is the ONLY local lab covered by our insurance for the test, and they've just been bought by Quest. I'm not sure how or if that will affect us yet. The test is prohibitively expensive without insurance coverage (though I think we still get to pay the negotiated rate, it's around $650).
12-28-2012, 12:49 PM   #59
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OK so not to belabor the point, but the checklist for Thursday is:

[ ] discuss exclusive EN as an alternative to Pred to get this latest flare under control, maintaining 6MP as the maintenance med

[ ] discuss upper and lower scopes and either an MRE or pillcam or both

[ ] discuss colectomy but only insofar as to get on the same page regarding expectations (ie, if there is small bowel involvement, I'm totally against it, also would like to try other therapies first.)

[ ] discuss Tacrolimus and/or Methotrexate (not a fan of injections as Sarah already has not only compliance issues but a pathological fear of needles)

[ ] discuss LDN and possibly push for this as an addition to 6MP?

[ ] discuss fecal transplant as a possible thing to try as a supplemental therapy to quiet down Sarah's symptoms and let the 6MP do its job
12-28-2012, 01:06 PM   #60
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Good luck muppet, I hope the appointment goes well and you are able to get some things in motion. C is on methotrexate in pill form once a week, so if injections are an issue you may want to include the fear of needles when discussing MTX with GI.
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