First Crohn's appointment for son

[kernelmom3]

Hi all! I posted yesterday about my son being diagnosed after a colonoscopy/endoscopy where his ped GI perforated his bowel. I first want to thank everyone for the warm welcome and wonderful advice. I'm going to call my pediatrician tomorrow and ask her for another name. Now onto my next question (haha):

They did the immunity panel on my son and he came back not immune to Hepatitis B. So he'll need a booster. Is that because of the meds they put them on weakening their hyper immune systems? They also want him to have a small bowel follow through and then come in for a meeting and discuss treatment options. Have any of you opted out of medicating if the Crohn's is mild? I don't want to jump into anything that has side effects but I don't want his Crohn's to get worse!

 

[DJW]

Hi.

I don't recall specifics of the hepatitis vaccine but I needed to get it in the spring (not sure if its a live vaccine or what). I'm sure someone will be along who can answer that question.

Regarding meds. When I was first diagnosed none of the meds or diets worked to control inflammation. As a result I've endured numerous surgeries and a lot of very serious complications. Meds come with risks but I believe the chances of complications far out weigh the small risk associated with meds.

 

[malorymug]

My doc, mind you I'm only 6 months into this process, told us (my son, 13, is moderate) that the current line of thinking is that the meds to help mild are cumbersome and not very effective. He suggests that starting in the middle (6-mp, mtx) and working up for the not so severe cases.

It is working for us...

 

[Momtotwo]

How old is your son? I would do an MRE rather than small bowel follow through if that is an option. The MRE does not expose a child to radiation. The SBFT does.

My son is also non-immune to Hepatitis B and he was tested before starting any meds. Many parents report the same. They don't do post-series antibody tests on kids, so who knows how many kids are not immune. I'm going to have my daughter tested (non IBD child) the next time she needs bloodwork. My son is also going to repeat the series, but we didn't start that yet.

 

[Momtotwo]

Hep B is not a live vaccine.

I explored every option other than meds. I agreed to Remicade and MTX reluctantly. What is their criteria for saying your son's disease is mild?

Other parents have tried SCD with some success. EEN has research to support its use to induce and maintain remission.

 

[Momtotwo]

I just read your other post. At age 14, I would insist on an MRE rather than a SBFT. It will show more and it will avoid radiation. You might have to fight with the insurance company but you should win that fight since it is standard work up now.

Unless there is a some reason I don't know related to the bowel perforation, I don't know why any dr would suggest a SBFT today when other options are available. I would question how current a dr is with Crohn's management if that was offered.

 

[Sascot]

We have never had immune panels done, so no advice there. I tried the non medicating route as my son did 8 weeks of the EN via NG tube and had no symptoms after completing that. However after six months the calprotectin levels went from 120 to 670 and I didn't want to risk it getting as high as at diagonosis. The 6mp brought the calprotectin back down to 80.

 

[Mehita]

Before starting Remicade we tested my son and he had zero antibodies for Hep B also. He got a booster, but we haven't retested. About 10% of the population simply never builds antibodies to Hep B. It does make me wonder about the effectiveness of his other immunizations. You think you're fine and covered... until your GI orders an antibody test!

Regarding opting out of meds, from personal experience, BIG mistake. My son was labeled "mild" initially, so we didn't treat for two years. Then things started to progressively go downhill. When 6MP was suggested, I said no, and my son ended up paying the price. He had simmering inflammation that turned into a scar tissue stricture. He had to have surgery to remove 10 inches of his small intestine.

Post-op, he started on 6MP (Azathioprine) and still flared, developed an abscess and fistula and was re-classed as "severe". Now he's on Remicade and finally in remission. I completely regret not getting him on meds, and the right meds (which takes time to figure out) sooner. Had we done so, we could have probably skipped three hospital stays and surgery.

Just my opinion, but I'm convinced our kids need meds. They have a tricky, sometimes invisible, and unpredictable disease that doesn't go away and doesn't follow any set of rules. I think the risk of not medicating FAR outweighs the risk of the meds. Been there, done that.

 

[CrohnsKidMom]

I don't think meds would have caused your child to not be immune. That is just something that happens sometimes to some people. I wish my son was tested for disease immunity prior to starting his meds. Would've been good to know and I would've have given him any necessary boosters prior to his going on an immunosuppressant. Remember, no live vaccines once your child is on an immunosuppressant. I second (or third) the MRE. Not sure where you are located, but if you're in Canada, it would be covered with no cost to you or your private ins. As far as not medicating, I think a mild case would eventually turn into a moderate, possible severe, case without meds. And I'm not sure if there is a specific criteria used to classify CD, but when I asked our GI, he said,"well, it's much more than an inconvenience, but he doesn't have an abscess/fistula/require surgery, so your son would be moderate". Hope this helps!

 

[my little penguin]

Ok few things the meds did not cause the vaccine titers to go down period.

As far as not medicating - too much risk
Risk of obstruction, structuring narrowing scar tissue.
Crohn's is EVIL- if your child had the same sores on his outer skin ( stomach arm back etc..)
Not one parent would consider not medicating.
Most have inflamed bowel ( extremely red and thin) and ulcers ( where infections -abscesses can take over)
Add in the body repeats the inflammation cycle over and over - hence scar tissue -similar to a scab on a cut . The intestine is meant to be flexible - scar tissue does not move - causes pain and reduces the amount of nutrition absorbed.
Most kids have disease progression and more severe disease course -this is a known fact -
Adults tend to stick with the area where they are dx and the type they are dx with.
Kids spread over the course of ten years from dx most go from infkammatory to fistulizing/stricturing .

Large majority will need surgery (75%)-even the one who start out mild.

Not to say it is easy we have all been there with trying to change diet or do formula only or just the "weak" meds.
The reality is weak meds give you all the risks ... But none of the benefits and a false sense of security that everything is ok when typically it isn't.

It takes time to get to a good place . The first year was the hardest .
I am in year three and have learned how to deal a little bit better for now .

 

[kernelmom3]

Thank you all again! I went back and read my original post and realized I phrased it wrong (regarding meds). I know meds don't cause immunity to go down, I meant to ask if they checked antibodies BEFORE giving meds for Crohn's because the meds they prescribe lower the immune system. I'm pretty sure that's the reason. After reading the replies I have to say I have no question now about my son starting meds. Can I get some ideas on what your child/children started out taking? I know every patient is different but I'd like to go in to the initial appointment with SOME knowledge. Thanks so much!

 

[Mehita]

We started with prednisone, then Pentasa which didn't do much. Unfortunately, had surgery, followed with Azathioprine. Azathioprine wasn't strong enough. Throughout this time he'd been on and off pred and become pred dependent. I didn't want to do a fifth round of pred so he moved on to Remicade. He's been in remission since starting Remicade.

You might want to check with your insurance company too. Some will only cover treatment if you take the bottom up approach - try and fail each med as you work your way up.

 

[CrohnsKidMom]

Our GI gave the choice of EEN or Prednisone as initial treatment. EEN was highly recommended, but for a variety of reasons we went the Prednisone route. Our GI usually does a "step-up" approach, starting with Imuran and moving toward the biologics (i.e. Remicade). Other GIs start with biologics and work down from there. My son tried Imuran (Aza; sister drug of 6mp), but couldn't tolerate it. As he had already been on Prednisone for several months, the GI moved him on to Methotrexate (MTX) injections. It was thought he may have also been intolerant of 6mp, and MTX kicks in a little quicker anyway. It has worked well for him and he is now in remission. All the best to you as you work through these decisions.