How did your doc/you decide on the current form of treatment for your child?

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As many of you know D has had a tough go lately. I am starting to feel like we are pulling things out of a hat in hopes something works. On the list of IBD meds, I think soon we will be able to say we have tried them all (We are also awaiting second opinion information, & I am now requesting a 3rd opinion before surgery, which is now being highly suggested). The latest is the doc wants to introduce Imuran, but is not sure which drug we will take away (Humira or Methotrexate) if any. It makes me wonder how docs even decide what to try.

So my question to you is, how did you or your doctor decide the current form of treatment your child is receiving? Trial & Error? New research? Request from you or another physician?
 
Well, my answer isn't going to be very helpful. DS has never been on a combo of drugs. He's always just done one at a time and kept flaring until Remicade.

My first question is have you tested her Humira levels? That would indicate if Humira is doing anything for her (at least theoretically). If her levels are good, then I think I'd swap the mtx for Imuran and see how it goes. I don't think I'd just keep piling meds because then you're never going to know which one is failing/working, kwim?

What kind of surgery are they talking about?
 
For Remicade, it was something I had suggested after hearing about it. My GI was incredibly passive and never did any follow-up and I switched to another GI after I landed myself in the hospital.

My new GI really converses with me, and I've done enough research or learned enough from this forum that I'm able to debate the medications with him or ask questions. I'm also pretty outspoken when I feel something isn't working for me after my last GI experience. So I'm currently just on Humira, but need to go on another immunosuppressant soon. (Likely Methotrexate or 6mp.)

In D's case, I think methotrexate should be the medication removed, since Imuran is another immunosuppressant. It might be better for her, and that way she could still have the added biologic on top of it.
 
The Humira test has been done, just waiting for results back. Until we know that we aren't deciding which one to drop. I am not keen on starting a new med unless there is a very compelling reason to do so. She is already medicated enough. I fought hard against being back on prednisone, but with the latest issue with EEN, we had no choice.

We are speaking of removing her terminal ileum and potentially her sigmoid colon. Appointment in 9 days to discuss further. GI took her case to the big digestive conference in Chicago this week to speak about her with other colleagues. Now that she is back on full dose prednisone it will probably change the schedule of things.

I ask the question I do because I am tired of the 'cross a drug off the list' approach, which I feel we are now at. I know a few have our kids on combo treatments but any drug we chose to give to our child is one I think we all have really thought heavily about before agreeing with the doc, or suggesting it to the doc.
 
You don't often see people on two drugs from the immunosuppressant class, like methotrexate and 6mp. I'm not saying that it never happens but I do believe it is a lot more uncommon in the CD world.

I agree with theOcean in that if humira is therapeutic levels and there are no antibodies I would try the thioprine/humira combo and drop the methotrexate.

C was on the remicade/methotrexate combo but still had disease progression. We are in the "what's the next step" phase and could possibly be surgery. In the meantime, he was switched from oral MTX to MTX shots due to his spondylarthropathy dx. He isn't having any CD symptoms right now and he is trying to put weight on with EN. I guess that way if surgery is the route we take he will have sufficient weight.

I hope you find something that will help her soon!
 
We have done several combinations: Humira +methotrexate, Enbrel+Arava(before she was diagnosed with Crohn's), then Remicade+methotrexate, Humira+ Sulfasalazine and now a high dose of Remicade+ Sulfasalazine. We might try Imuran or 6MP next but since it's M's joints that are out of control and not her Crohn's, it's more likely we'll go to Arava (which is used for juvenile arthritis) and then perhaps Stelara+Arava.
I have no answer, for us it has been trial and error and a long and frustrating process. M has had several good months in between, but mostly has been in a lot of pain for four years and has several very damaged joints. She will most likely need hip replacements and possibly a knee replacement.
We have seen many rheumatologists and several GIs and are in touch with a researcher (both my daughters are in his study) who usually tells us what's in the pipeline and what to try next.
Sending hugs, I wish there were better answers.
 
We have gotten three separate opinions for DS from three seperate Gi at multiple hospitals.
The Gi and I discuss what the options are pros cons etc...
DS has been on multiple combos including 5 ASA , rectal creams , probiotics etc.
DS was stepped up through therapy slowly but combos were added before crossing a drug off the list.
DS is now at the end of the list per say .
So crohn's wise things are ok with his current cocktail .
Joint wise is a different story.

There really isn't a whole lot else out there...
But there have been cases where a drug wasn't enough before surgery
But a milder drug like 6-mp was all that was needed after surgery .
Dusty's kids come to mind .

Wish it was easier
 
I'm not much help, but our GI generally does a "step-up" approach. No 5 ASAs for my son though as his CD is mainly in the small intestine, and the GI said this class of drugs would not be effective. Imuran was tried, but my son could not tolerate it. We skipped 6mp as it was thought he might react to it as well. MTX injections are working well. Oral dose was not considered as it's hard on the stomach. If MTX doesn't appear to be enough anymore, we'd likely add/change to Humira, although the GI said we may give 6mp a-go first. Good luck!
 
For those in Australia the main path that is followed is the step up approach unless you are a paediatric patient with moderate to severe refractory disease, at which point the biologics are available much earlier on.

Sarah: Was undiagnosed until the time of her surgery, therefore she had received no treatment prior to her resection and hadn't seen a GI. Her GP rang a GI that he had referred other patients with Crohn's to and with which he was impressed by their progress once reviewed. Sarah was commenced on Imuran 50mg and has remained on that ever since. The dose has never been adjusted as she has had no relapses since the surgery nearly 8 years ago.

Matt: Was diagnosed very quickly with next to no symptoms. At diagnosis he was commenced on Imuran 50mg (100mg dose was pending once the TPMT result was received. It was considered it was likely safe for him due to Sarah having no issues with it), Prednisone 40mg and Flagyl 400mg. He was to be reviewed in 6 weeks and if the GI did not see good clinical and objective markers at that point then he was going to move him onto Humira. As it was we didn't make it past 3 weeks before complications set in. Although his disease was rated as very mild to mild it only took two deep ulcers to cause no end of problems, that being fistulas and abscesses.
Surgery quickly became our only option and between hospital admissions he remained on the Imuran, which was upped to 100mg, continued with Prednisone until the course was complete and also remained on Flagyl for 6 months (3 months pre-op and 3 months post-op) and Augmentin Duo Forte for 3 months to keep the abscesses under control till surgery. Whilst I don't think this regimen made improvements to his Crohn's overall it did maintain the status quo until his resection was done. The reason for the delay in surgery was the surgeon was waiting for the inflammation to go from an acute to chronic state an thereby optimising the chances of the least amount of bowel being resected and the need for a temporary stoma would be reduced.
Since surgery he has remained on Imuran 100mg and when his old GI retired, about 12 months ago, the new guy that replaced him suggested he also take Pentasa 1grm twice daily. I questioned the effectiveness of this and whilst the GI agreed that it was a pretty useless drug for Crohn's he was able to pull up a couple of studies that showed Pentasa may be useful in post resection Ileal disease. Now the statistics are from impressive but the GI felt that given Matt's speed of onset and severity of disease that even an added 2 percent chance of keeping him in remission was worth it. Matt was happy with the maths and stated to the GI that he didn't mind taking tablets so it was a no brainer and Pentasa was added. It was also the GI that suggested we add Turmeric.
Matt has also had no relapses since his surgery 3 years ago.

The impression I received from the original GI was he was not prepared to sit around and wait for things for happen. The new guy, although having some different ideas, is also very pro active and I get the feeling with him too that he would change treatment in a heart beat if he felt there was not an adequate response in a very defined time frame.

I agree with what others have said...I wish it was easier and more defined for you. :ghug:

Dusty. xxx
 
We definitely did the step up approach. Started on Imuran right away, it just never seemed to be quite enough. We tweaked dosage added Apriso, Pentasa, Allipurinol but he never did gain weight or grow while on it. Tried methotrexate (oral) saw great results disease wise but he developed some lung issues and had to stop, went back to Imuran/Allipurinol combo for a little while and then tried LDN at his GI's suggestion, we were having a hard time justifying a move to biologics as he was virtually symptom free except weight gain/growth so some success on LDN escpecially when we added in EN finally saw some growth and weight gain but he caught c-diff, flared and we came to the conclusion that maybe he did need the biologics as weight had dropped once again and growth was minimal and definitely not where it should be which brought us to remicade. It took us just a month shy of 4 years to get there. I do wonder if we would be having all these growth issues if we would have done it 2 years ago when we were hemming and hawing over remicade.
 
We did "step up" but ONLY because we couldn't go "top down" because of the TNF issue. It's so frustrating.

It doesn't help to know we aren't alone but we have friends in this town with a 17 year old daughter that's had JRA since she was 5. They are in the same boat. It's a med until it fails, then the next until it fails. It STINKS.

I have gotten much more assertive, due in no small part to what I read on here, about asking for something or about something. So far, we've agreed on the course of action but when it's your baby's quality of life, I don't think asking about anything is out of bounds.

Thinking of you all........sounds like a big time crossroads and you've sure been through it!!!

Hugs,

J.
 
We went from bottom of the ladder to top in one small LEAP. :eek: After six weeks on exclusive EN, they moved him to supplemental EN (1/2 dose) as maintenance and he was on that until his transfer to adult GI a bit over a year later. Although MREs did show continued inflammation, his ped GI didn't seem to be in a rush to add anything more - he'd comment that 'we'll consider metho after results' but always seemed happy with S's progress and all results. To be honest, I think part of his reasoning was that he knew S was going to be transferred soon and, as S was stable and in clinical remission, perhaps he was hesitant to commence a new treatment knowing another GI would be taking over in the near future???

Anyway, once we moved to adult GI, and did an MRE, he immediately went to remicade to halt inflammation. To be honest, I wasn't happy with the leap forward and do think we could have tried LDN but... S felt more comfortable with the GIs recommendation and didn't want to risk damage from continued inflammation. So... here we are. Not to say I'm not happy - for the most part, S has done well so, my hesitation was very much motivated by fear in moving to any med! :(
 
Totally understand about the fears Tess!
For us the decision was tough but we tried many things before we pushed for LDN and I am so glad we did.
 
Don't blame you for worrying so much. I feel one of the worst things about this disease is the fact no med is guaranteed to help plus everyone is different. We haven't had to change meds yet, but as far as I am aware we go from 6mp to methotrexate to Humira or Remicade. I hope whatever is decided works well for you
 
My son was diagnosed after a small flare last year. GI started him on pentasa and it worked great for about 14 months. He had a really bad flare a couple of months ago and the doctor immediately jumped to remicade with imuran. I was absolutely adamant he wasn't taking it due to the increased risk of lymphoma in young males but after a month in the hospital, surgery for fistulas, a blood transfusion and watching him waste away to anorexic weight, we had no choice. He started remicade about a month ago and the dosage was just doubled because it wasn't working as well as the GI hoped. GI says that if it doesn't work, we have to look at surgery :(. It really is a game of hoping and praying that you find the right fit that works. Unfortunately there is no perfect answer that works for everyone !
 
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