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Seeking advice for my 8-year-old son (diagnosed with Crohn's).

So my son has been dealing with issues for the past 3 months or so. It started with a fissure, and he ended up having a fistula not long after. He had a fistulotomy in mid-December, and it was his unusually slow healing time that caused his doctor to even suspect Crohn's (there were no other markers - he's chunky, seems to have decent energy levels, and had never had any abdominal pain or previous bottom issues).

Well, on Monday we had his endoscopy and colonoscopy (the upper GI came back clean), and the doctor informed us that he believes he has Crohn's. He said he'd call the intestinal portion mild (he had some ulcers on his esophagus and some pussy looking areas near his ilium - I forget if he called that ulcers, swelling or what, but it wasn't out of control by any means). He did say, though, that he'd say the perianal portion he'd call moderate.

Long story short(er), he's recommending Remicade, and his mother and I are not entirely sure we want to go this route. He wants to take a chest x-ray to check for TB, of course, and wants to start him on Entocort today. The side effects of Remicade (though obviously rare) are extremely concerning to us. I've seen that some doctors take a Top-Down approach (and go right for the heavy meds) while others take a Step-Up approach. Even Remicade's site says it's to be used when other meds fail.

The doctor mentioned wanting to go with Remicade because he wants his bottom to heal (like I said, it's been three months....though he's actually feeling pretty good now, and his bottom looks better than it has at any point...but it's not healed completely).

This isn't even taking into account the cost. We have Blue Cross Blue Shield for the kids' insurance, and we don't yet know what they'll cover. We were actually thinking we'd be better off going with more natural things (fish oil, coconut water) in combination with more conservative meds (steroids, maybe, for flare-ups....something other than Remicade).

Sorry for the long post, but it's more than just a little overwhelming. Any help, input, insight, encouragement, et cetera, would be greatly appreciated.

Steve
 

DustyKat

Super Moderator
Hi Steve and :welcome:

I'm so sorry to hear about your boy and that you had to find your way here but you have found a wonderful place for support and information.

You are right about the approach that doctors take and I would well imagine that your doc has gone straight to Remicade as it has a very good record at healing perianal disease and with moderate disease already present there it would rule out the milder drugs. There may be other alternatives to consider like Enteral Nutrition but I doubt it would have an effect on perianal disease. There is another treatment called Low Dose Naltrexone but I don't how effective it is on anal disease.
I guess you could question the doc about a combination of therapies like EN for the disease higher in the bowel and something more targeted for the anal aspect of things. I think the most important thing is to be objective with whatever treatment you choose and be open to change if need be.

Ultimately, as you well know and that is what makes it so hard!, it is up to you to decide. Entocort is the milder of the two steroids as it doesn't have the degree of systemic side effects that Prednisone does but it is only mean't as a short term treatment.
We have a parent's forum here so please pop on over and have a look around, we have many parents there and with a wide range of experience with treatments...

http://www.crohnsforum.com/forumdisplay.php?f=49

...you will be very welcome, especially with the Dad's! :lol:

You have many kindred spirits here Steve, we have all had these heartbreaking decisions to make so know exactly what you are going through. :hug:

Good luck mate and welcome aboard. :)

Dusty. xxx
 

Crohn's 35

Inactive Account
Hello there welcome :bigwave: So sorry you son is dealing with this and you and your wife as well. The new way is to hit it hard but that is not in all cases. Seeing as he is in a mild stage, I would think to just try the Entocort. Less invasive. I am not a doctor and it is best to discuss your concerns for your son.

Not all side effects are the same for us all. I have ulcers in the Ileum too, but I do pretty well with just Flagyl, I am allergic to everything else or react really fast to the meds.

Try to avoid Prednisone, as much as possible. Keep us updated on how your son is doing!
 

David

Co-Founder
Location
Naples, Florida
Hi Steve and welcome! I'm glad you found us and am so sorry to hear about your little one. I can't imagine how hard that must be :(

I want to second what Dustykat said about enteral nutrition. If it was my youngster, that would likely be my first approach. That he has already had a fistula is concerning which is likely why your doctor wants to take the top down approach, but I'd personally probably still go with enteral nutrition first.

Either way, we're here to support you in any way we can. I wish you and your family all the best.
 

Angrybird

Moderator
Location
Hertfordshire
Hello Steve and :welcome: I am sorry to hear about your lad but am pleased you have joined us, there is so much information and support available here from a great bunch of people. I would also agree about trying alternatives before the Remicade, I would always prefer to try the 'lower' end drugs before going for the big hitters. I hope a working solution can be sorted quickly, let us know how things go.
 
Hi Steve, all the best for you son.
I was diagnosed with crohns aged 11 and I was put on Prednisolone steriods. I have had all sorts of treatments over the years and 2 surgeries. I have suspected adhesions at the moment (ultrasound next week). I have recently read up on the LOFLEXX diet which the professor who's book I am reading, states that 100% of his patients have gone into remission following the LOFLEXX diet. It is concerned with only eating set foods for a while and then gradually introducing the 'allowed' food into your daily diet. Everything I have read on this has been 100% positive and I recommend you research this as it is completely natural. Your son may need a liquid diet to start with (such as Ensure drinks) and then onto the LOFLEXX method. I am sure that if I get another flare-up then I shall be certainly trying the LOFLEXX method. For UK readers, this diet was undertaken by a young lady on channel 4's 'Food Hospital' and I think you could watch it on 4od catch up.
Best Wishes
Leigh
 
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