Here are some papers and abstracts which should give an idea of the rationale behind top down vs. step up treatment:
http://www.wjgnet.com/1007-9327/full/v14/i36/5523.htm
http://www.ncbi.nlm.nih.gov/pubmed/20210762
http://www.ncbi.nlm.nih.gov/pubmed/23797128
http://www.ncbi.nlm.nih.gov/pubmed/12617888
http://ecco-jcc.oxfordjournals.org/content/7/11/923.long
And one on pediatric Crohn's
http://www.ncbi.nlm.nih.gov/pubmed/24909831
I don't think it's entirely clear cut because there isn't, I don't believe, a reliable way of differentiating between the patients who will progress to severe disease and it's entirely natural to want to avoid the side effects and risks of the medications. So, as they say in these papers, it's a matter of balancing the risks of the treatments against the risks of the disease.
Your daughter is currently on the best treatment to induce remission in children - one without any side effects, except of course the emotional and practical difficulties of living on a liquid diet. If she can manage the liquid diet with all your support and encouragement and hopefully the positive reinforcement of feeling much healthier and better in herself, then that is so much more desirable than using steroids - having taken prednisolone a few times, I would say that I would never let a child of mine take it (you know if there was any other way) and I personally would be much happier to progress to adalimumab instead.
It's important to have the discussion with your daughter's GI as to why they feel pentasa is the right choice for her as a maintenance treatment - on the one hand I wouldn't be too worried about side effects relative to other maintenance meds (sorry I do know you are worried about that but I felt I should say that clearly, and not to say you don't have to watch out for side effects from any med) so it probably won't hurt her but on the other hand I understand you not wanting her to take anything she doesn't have to (and I do remember Pentasa pills as being especially unfun to take) and you may well be right that it could be unnecessary as I'm not sure how much good it will do. I don't believe it is a medication that has proven terribly useful for treating Crohn's. Also, and I'm saying this because I really didn't know to ask this early on in my diagnosis, you'll want to understand what signs of the disease they are already seeing in her bowel at this stage because there may already be indicators about the course her disease is likely to take - for example if they are seeing strictures, fistulas or panenteric inflammation. And it's good to know from the outset how they are planning to monitor her disease activity and determine whether her inflammation is well controlled.
For anyone newly diagnosed I would, based on my experience, say that one of the most important things is setting that benchmark in your own mind of when you were healthy. Sometimes with an illness like this that can take a long time to get to diagnosis you find that it is actually hard to remember what being well meant but hopefully you do remember how your daughter was when she was healthy and there will be some objective things that you can measure in terms of what she used to be able to enjoy doing, energy levels and I think just as her mum you will know how she seems in herself when she is well. I would advise anyone that you now have to make that your target - to get back to that state. I know that there are many stories here that will make that sound unlikely or impossible but it has to be the goal and you need a doctor who will work with you towards that goal (and not someone who will say "well of course she has Crohn's so we can't expect for her to feel the same"). I think as Crohn's patients our mantra in respect to treatments needs to be "if at first we don't succeed, try, try again" or perhaps "if at first we don't succeed, move on to the next one". Because there are a whole range of treatments available and while you usually start with the ones that work for the greater number of patients, you never know what will work in a particular individual. I'll be honest it is exhausting, but that resolve to leave no stone unturned is what can get you healthy and keep you healthy.
About the MAP vaccine, I completely understand you not being sure. I can tell you that I think it is promising but that I don't think anything is guaranteed. Some people have had really positive results with the anti-MAP antibiotic therapy and I believe that the study that was done in Australia had very positive results - despite the fact that they contradicted themselves and drew negative conclusions about the efficacy. I would really very much like to see the trials completed for the test and the vaccine. If it is a cure then it's certainly our best chance to get one in a relatively short timescale. And while it may not be a cure, it could still be a very helpful treatment or part of the treatment for a proportion of Crohn's patients. I think the idea that Crohn's is related to MAP bacteria and Johne's disease in cattle is one that should be fully investigated and that these trials and studies are all important even if they only put to rest this hypothesis. Plus in the scheme of things the money they say they need to complete this research is so small, I feel pretty keen on fundraising for it and I think it's enough to be able to say to people this *might* help people with Crohn's. It's funny but for a disease that is supposed to effect only a small proportion of the population almost everyone you meet seems to know someone. Or perhaps that's just one of those funny perception things that happens once you are diagnosed. Anyway I like to think that quite a few people would be happy to donate a pound or two.
Also just to say you are not a babbling lunatic and even if you go into a doctor's appointment and for example find it overwhelming and forget what you were going to ask or quite how you were going to ask it (writing down notes helps somewhat!) you still mustn't feel like that. You are a rightly very concerned mum and deserve all the time you need from your doctor for explanations and reassurance and answers and we Crohn's patients and parents should get to ask whatever questions we like and no one should ever make you feel they are silly or invalid. And yes I am saying that because of some experiences that I have had and also how my mother has told me she felt at times with me as a teenager and young adult. I just want you to know that you have lots of Crohnies and their parents standing with you in spirit when you ask whatever questions you feel are right! :ghug:
I'm sorry that this is such a long reply and I hope it doesn't seem crazy and over the top. I just really don't want other people to have the same experiences that I had and hope that I might be able to say something to help.
p.s. totally on the same page re:the kindness of strangers. I might not believe in much but I do believe in that.