A Nightmare

My daughter was diagnosed 2.5 years ago, is steroid dependent, has been on ssz, pentasa, imuran (allergic), clipper, flagyl, vancyo.. She is flaring. A month ago we decided to proceed with remicade. she was given a bcg vaccine at birth (long story). no indication of tb exposure BUT she is on "low dose" pred and still had a semi positive skin test. SO, we had to wait almost a month for an appointment with infectious disease this morning. Result - there is no reliable test if the skin test is positive, they can not decipher between bcg and actual TB and so she should do a NINE MONTH course of prophylactic anti tb treatment.
Now, our GI has her ass up her butt and should have ordered this LONG ago. Problem now, she's had way too much pred, no remicade for nine months, allergic to aza and likely 6mp and even if we did try 6mp she would have to wait for three months on high dose pred.
I am just absolutely lost. Any thoughts? I just can not accept the most obvious "choice", not that I am anti surgery but I am just so afraid of it turning out to be CD and then being down a lot of intestine.
So basically, barring a miracle we are absolutely screwed. I'm trying to think this might be a blessing in disguise but we are really very unlucky so I really doubt it.
BTW, she has tried ALL alternatives.

Thanks Sue,
My concern isn't a permanent ostomy (barring complications we would keep the ostomy long term anyway. if reversal was possible we would do it much later) but my fear is CD at the stoma site. I know it's "rare" but it is a serious risk. Then what? I've spoken to a LOT of parents these past few years incl. Elmerfudd. They've been very helpful but of course everyone's case is different. I've spoken to parents whose kids are perfectly well and those who have had CD reoccur. So, it's a toss up. I don't know if I can get anymore info really at this point. I've always been so scared of remicade though I know it's a miracle drug for some. Now that we can't have it when we need it I am just shocked and angry. and yes, i am worried about the pred and need to get her OFF (hence the remicade)..

I had the same issue when I was a kid - positive mantu (sp) test but negative chest x-ray about 8 yrs after I got the BCG vaccine as a baby. I got put on abx just in case for 9 months as well. At that time, I didn't have UC, but to this day, I believe that got the ball rolling. I don't remember if I had any side effects to the abx, but I don't think I did then. Around the age of 21, I went to a doctor for a constant cough I was having and he did another mantu test (without knowing my history) and it ended up being negative. The cough was post nasal drip. Anyhow, if I were you, I wouldn't give her the antibiotics. Also, all subsequent tests will be even more positive (larger swelling), so don't even bother...why not do a chest x-ray to see just in case?

You're in a tough place, but if I were you - I would still go ahead with the remicade and be vigilant while on it (maybe even do chest x-rays every 6 months to check?).

Would the previous abx she had been on for the UC have changed the outcome of her TB test?

Niro, Thanks for the information. I too believe she is reacting on the skin test due to the bcg and not latent tb. they are basically saying it's our risk but if she gets it it will be a particularly virulent form on remicade. So, even though I don't think it's an issue, it's still a big risk and i don't know if our gi will feel happy to take it if we want to. her chest xray is clear. Did you do the INH treatment?
6MP would mean more high dose pred, don't know if i can go with that.?

I am so sorry you're in such a tough place. I really feel terrible for this child. I understand 6mp can take a while to work but I think it may be one of the safer options right now. I haven't been lucky with 6mp and it took me a very long time to stabilize but now i am fine. I was able to taper my pred when I started 6mp. Is she on 40mg? Is she stable? If she's on a high dose and her condition is improving and gets tot he point where you feel comfortable decreasing, you can do so while on 6mp. What I did was, wait until I was stable and decrease, by the time the 6mp was managing my condition, I was on 15mg of prednisone. I was able to taper off 15mg slowly and I've been off for about 9 months, maybe more! If she's having trouble getting the flare under control on a high dose of prednisone, that's a scary situation and I understand why you want to get her on Remicade. I do agree with suebear, the prednisone has worse long term consequences than surgery in most cases but I also understand fearing CD. I have the same fears for myself. This illness is so unfair, especially for such a young child. How old is she again? I still think the antidepressant I am on helped me get into remission. If I remember correctly, she's too young for these types of medications.

You guys have tried a lot of the alternative therapies already if I remember correctly? This breaks my heart. I hope she can get into a long remission. I feel like 6mp has the track record, even if it took a while, if it provided her longterm remission, it would be worth it. I just hate to think of her being on prednisone. Have you had bone density tests to make sure her bones are alright?

Eva Lou,
I've already met with a surgeon (three actually) but have found one who I trust so that's done. Of course he can't give me any assurances as to the diagnosis or outcome, just tell me the complications etc. He is the best pediatric surgeon I'm going to find and his wife has CD and an ileo so he is pretty understanding unlike the others we've spoken to.
NSSG, I've sent out an email re: 6mp. she's on a low dose of pred at the moment but if i can avoid bumping her up at all costs i want to do that. we will see, can't stay like we are.
thanks all.

No, the chances of CD are higher in children, that's why they basically wait until they are on their death bed before recommending surgery. Don't think I can let her get there or watch her deteriorate any further. It is too much. Basically it woud be an end ileo for a few years (our choice and theirs) then see if reversal is possible. If it is, leave it up to her when and if she wants it.

Has she been flaring the entire 2.5 years? If so, that's really really bad--her body should not be inflamed for that long. And if she's already steroid dependent, I would not increase pred. If she's allergic to Imuran, chances are she'll be allergic to 6MP as well (my peds GI would not let me try Imuran since I had a reaction to 6MP for that reason). And waiting 9 months for Remicade...that's just too long.

I suppose you could try Rifaximin and schedule surgery in case the flare gets worse. Can she try Asacol, Lialda, or Colazal?

I really think you should go ahead with the surgery. If you wait until she really deteriorates, then the recovery is going to be much tougher. If, God forbid, she does get Crohn's later on in life, at least she had some time being healthy and there will probably be better meds by then.

If you want to get another US opinion, try one of these: http://health.usnews.com/best-hospitals/pediatric-rankings/gastroenterology

NiRO,
thanks, don't worry about it. . i was just curious. we're going to avoid it at the time. her GI will not let her go on Remi without at least three months of INH as those are the guidelines, so it's a no go a this point.

Have you had a pill cam done on her to image the entire digestive tract? I think this is important to do before surgery.

As for tb, it's probably the bcg vaccine, however...if she does currently have granulomous tuberculusos, giving her TNF-a blockers is practically a death sentence.

I would have a pill cam done for her and be ready for surgery, and in the meantime see if there are any clinical trials you can enroll her in.

I'm so sorry.

Is there any way they can rule out CD with some level of confidence? I would be so torn if my child were going thru this right now. But honestly, I guess since I had the surgery and I am on the other side of that fence, I would opt for that for my child instead of all the drugs. From the way her condition sounds, surgery may be the best answer. I'm so sorry you have to go thru this.

Hang it there killcolitis. We are praying for you guys every day. Something will give you the sign you'll need to make an informed decision. Your daughter is lucky to have you in her corner.

For all those offering "advice"....try to be less persuasive. Killcolitis needs support, not a guilt trip.