New Diagnosis of IBD in 12yo daughter - 2nd opinion advice and Tamiflu question

[Chladnyam]

Hello,
My 12yo daughter was recently diagnosed with IBD after colonoscopy and endoscopy. Original symptoms were diarrhea with blood and abdominal pain. I too have Ulcerative Colitis. She started on Entocort and Asacol 800 TID, which seemed to be working. She was only going to the bathroom a few times during day and not at all at night. About a week into treatment her sister got the Flu and they started my daughter on Tamiflu as a preventative. After about 3 days her IBD symptoms got worse, up many times at night. So we stopped the tamiflu and gave her two days to see if improvement. No change so they switched her to prednisone and decreased her ASACOL to 800 twice day. The prednisone seems to be working. Her nighttime visits to the bathroom are less and she is eating more, and daytime is much better. Yesterday she started coughing and now has fever and headache. She is being tested for flu later today(likely since it is going around school and her brother also has it). The dilemma I'm having is do we put her back on tamiflu since she is on steroids and at increased risk? I am still worried that the tamiflu the first time actually made her IBD worse. The other issue I'm having is that we've been waiting 3 weeks for a 2nd opinion at University of Chicago and her appointment is tomorrow. Do I reschedule (and wait 3 more weeks for her next appointment) or bring her sick? Her diagnosis is not clear yet. She has inflammation in colon but rectum spared which makes it seem more like crohns. But her ileum and upper GI were all normal and no granulomas on histology, which makes it seem like Ulcerative Colitis. Her GI says that either way her treatment would be the same. I was really looking forward to having a second set of eyes on her information as I feel like these early days are when a lot of important decisions about her treatment are made. Any advice is welcome! And any suggestions on peds GI Dr. in Chicago would be great too. Right now our appt is with Dr. Gokhale at U of C.

 

[my little penguin]

So if she has the flu (again tests positive) they will probably not let her see the GI
Or be in the office
Too many immunosuppressed patients

Asacol doesn’t suppress the immune system but pred does
As far as tamiflu if she is positive
I would let the GI know what happened last time and see if they want her on it again .
Any cold or infection especially the flu will cause a big GI flare for my kiddo
And per his GI that is expected
They just take longer to get over things

Prior to Crohns dx my kiddo had the flu and was on tamiflu and high dose pred at the same time - pred was necessary for his asthma

Definitely talk to your child’s GI on that one

They can advise what to do

 

[Chladnyam]

So if she has the flu (again tests positive) they will probably not let her see the GI
Or be in the office
Too many immunosuppressed patients

Asacol doesn’t suppress the immune system but pred does
As far as tamiflu if she is positive
I would let the GI know what happened last time and see if they want her on it again .
Any cold or infection especially the flu will cause a big GI flare for my kiddo
And per his GI that is expected
They just take longer to get over things

Prior to Crohns dx my kiddo had the flu and was on tamiflu and high dose pred at the same time - pred was necessary for his asthma

Definitely talk to your child’s GI on that one

They can advise what to do

Thank you for your reply, you are right about bringing her sick. I don’t want to expose others. I am going to reschedule it. Right now she is handling this respiratory illness ok. This flu season has been a rough one and the new diagnosis just adds to the stress of it all.

 

[Maya142]

I would talk to your kiddo's GI about Tamiflu and reschedule the second GI appt. Or at least talk to the nurse there - they probably don't want a kiddo with the flu coming in for an appointment. If you explain to the situation to them, they may be able to get you in sooner - as soon as she is recovered.

Her diagnosis is not clear yet. She has inflammation in colon but rectum spared which makes it seem more like crohns. But her ileum and upper GI were all normal and no granulomas on histology, which makes it seem like Ulcerative Colitis

A diagnosis may change the treatment, because if it is Crohn's, Asacol really won't be effective. 5-ASA's typically are not used by themselves for Crohn's since they only treat surface inflammation. Usually either an immunomodulator (like Methotrexate) is used or a biologic, with the 5-ASA.

Sometimes, they will do a trial for a 5-ASA but if she hasn't improved in a month or so, then it's not going to work and you need to move on to other medications.

Considering her dx is in question, a second opinion is good idea.

Remember that only 30% of Crohn's patients have granulomas. What tests did they do to rule out Crohn's? Did she have an MRE or a pillcam?

 

[Chladnyam]

I would talk to your kiddo's GI about Tamiflu and reschedule the second GI appt. Or at least talk to the nurse there - they probably don't want a kiddo with the flu coming in for an appointment. If you explain to the situation to them, they may be able to get you in sooner - as soon as she is recovered.


A diagnosis may change the treatment, because if it is Crohn's, Asacol really won't be effective. 5-ASA's typically are not used by themselves for Crohn's since they only treat surface inflammation. Usually either an immunomodulator (like Methotrexate) is used or a biologic, with the 5-ASA.

Sometimes, they will do a trial for a 5-ASA but if she hasn't improved in a month or so, then it's not going to work and you need to move on to other medications.

Considering her dx is in question, a second opinion is good idea.

Remember that only 30% of Crohn's patients have granulomas. What tests did they do to rule out Crohn's? Did she have an MRE or a pillcam?

She has only had the colonoscopy and endoscopy with biopsies so far. No pillcam or MRE. And she tested negative today for influenza so just a bad virus.

 

[Maya142]

She really needs a pillcam or MRE to rule out Crohn's. I'm surprised your doctor hasn't done one. There is the a LOT of the small bowel that cannot be seen when scopes are done.

If she doesn't have the flu and it's only a virus and she doesn't not have fever anymore, then I'd just check with the second opinion GI's office - I bet they will see her. At our GI's office, they just have a sign to tell the front desk if your child has a cough/cold and they usually just give the kid a mask and have you wait separately in an exam room instead of out in the waiting area.

 

[Carolina*]

Please keep us updated on how things progress, my 11 year-old was diagnosed in October and had a similar presentation. She’s classified as indeterminate Colitis, it is presenting like UC but patchy like Crohn’s in that one area is missed. I’ve learned Pediatric UC can be patchy though not norm, we’re on a wait and see also.

My sister-in-laws’s twin is the Vice President of Risk Management, Patient Safety & Compliance at U of C Hospital. I am happy to pass along an inquiry for a Ped GI recommendation if needed. She’s offered to have their Doctors review my daughter’s case but I haven’t done it.

 

[Chladnyam]

We made it to the appointment today. The clinic said she could come as long as she wore a mask and didn’t have fever. It was recommended that she have a MRE done to get a complete picture of her small bowel. IBD Serology bloodwork. And her slides are being reviewed. Hopefully this will give us a better idea if UC or Crohns. They’ve recommended she start on 6MP now while on steroids. It was a very informative visit and I am glad we went when we did. I’ve learned that Pediatric IBD is different from what we as adults experience, and therefore treatment may be more aggressive. I am relieved to have a plan in place, but also nervous about starting another immunosuppressant.

 

[crohnsinct]

Glad they saw her and glad you got a lot of good information.

Prednisone will just be used as a bridge therapy until the 6MP kicks in so she won't be on two immune suppressing drugs for long term.

If you really, really want to avoid prednisone, have you heard of Exclusive Enteral Nutrition (EEN). It is used often with kids (not as successful for adults) to induce remission. It is just as effective as steroids but has none of the risks and the added benefit of really good nutrition and aiding with weight gain etc. Let us know if you are not familiar with it and we can give you some resources.

FWIW - our ped GI will almost never approve Tamiflu because of the gastro side effects unless there is a positive flu test. Even then, if my girls are flaring he will try really hard to avoid it.

 

[Maya142]

Also, many kids are on two immunosuppressive drugs - usually a biologic and an immunosuppressant. Mine have been on combination therapy for years and we haven't had any issues with infections.

Prednisone is riskier than a biologic or an immunomodulator in terms of infections. But my daughters have been on Prednisone with a biologic + MTX/Imuran many times, and they have been fine - all through middle school, high school and now college.

We don't do anything special except practice good hygiene. I tell them to wash their hands a lot - as soon as they come home, it's the first thing they do. They both carry hand sanitizer with them. My younger daughter is in college and she also tries to avoid sitting next to classmates who are sick but it doesn't always work.

About 6MP - many pediatric GIs are moving away from using 6MP and are using Methotrexate instead. 6MP and its sister drug Imuran have a higher risk of cancer, so most pediatric GIs are now using Methotrexate much more. Our GI uses Imuran or 6MP if absolutely necessary but prefers MTX. Some ped. GIs will not use 6MP at all anymore.

The risks are still really tiny, it's just that they are higher than those that come with MTX, so MTX is a better option for many kids.

 

[RonniB]

She sounds a lot like my son who was diagnosed with indeterminate colitis. He's on Remicade (biologic) and Methotrexate.

He's dealing with a bad cold and cough right now and it's his first real illness since he was diagnosed in April of last year. I preach to both of them about washing their hands, trying to avoid sitting near kids who are sick, and hand sanitizer goes everywhere with them.

Hope you can get into the 2nd opinion appointment as soon as she recovers.

 

[Chladnyam]

Thank you again for all of the replies. I think the 6-MP was recommended because they are leaning more towards a diagnosis of Ulcerative Colitis vs. Crohns. The Dr. said 6MP is better if UC. Methotrexate if Crohns. Still waiting for the second opinion reading of her slides. She had the IBD serology panel done yesterday and we are still waiting to schedule the MRE. In the meantime, I have a question about her steroids. One Dr. says to taper slowly, reducing dose every one to 2 weeks. Her current Dr. is wanting to taper much quicker (every 3 days). She hasn't started the 6MP yet, waiting for her Dr. visit tomorrow to discuss it. Any experiences with tapering the prednisone? The last thing I want is for her to have a recurrence of her flare. She is finally doing better and has some relief.

 

[Maya142]

Generally, tapering slowly is better, because it allows the body to start producing cortisol on its own again, as you reduce the corticosteroids. As you said, it is also better because if you do it too quickly, she will flare again. Plus, she isn't even on a maintenance medication yet and 6MP takes MONTHS to work. Not weeks, months. So you do need something as a bridge - it is usually Prednisone or EEN.

 

[Farmwife]

I second what Maya says.
It's better to go slow.
Have you looked into EEN as a bridge thereapy? Sorry if I missed it.

 

[my little penguin]

Yep ^^^^yeah that
Weaning prior to being on maintenance meds really isn’t recommended by our gi for my kiddo

I would ask again about mtx vs 6-mp
Both are immunosuppressants
One just has slowed lymphoma risk -mtx

 

[crohnsinct]

Enthusiastically agree with Maya on all fronts! I wouldn't even begin to entertain tapering until she has started her maintenance med. Slow is the key. Also, don't be surprised if you step down and have to go back up a few times. You will get there. It is a marathon not a sprint.

 

[Chladnyam]

Since my last post, my daughter is down to 20mg prednisone and her Dr. agreed to do slower taper(5mg/week). She has also been on the 6mp for a week and has been tolerating it ok. Her IBD serology results came back suggesting Ulcerative Colitis. She is supposed to have her MRE Wednesday but now I am thinking I want to delay it. She is doing great with her taper and I don’t want to mess with a good thing. Any insight or suggestions? What can you all with experiences with MRE tell me so I know what to expect, and has it even aggravated your child’s ibd? I’m not saying cancel all together, I’m just considering delaying it.

 

[Carolina*]

Since my last post, my daughter is down to 20mg prednisone and her Dr. agreed to do slower taper(5mg/week). She has also been on the 6mp for a week and has been tolerating it ok. Her IBD serology results came back suggesting Ulcerative Colitis. She is supposed to have her MRE Wednesday but now I am thinking I want to delay it. She is doing great with her taper and I don’t want to mess with a good thing. Any insight or suggestions? What can you all with experiences with MRE tell me so I know what to expect, and has it even aggravated your child’s ibd? I’m not saying cancel all together, I’m just considering delaying it.

My daughter is Indeterminate Colitis, inflammation in colon only. I am still glad we did the MRE right away, they suspected it would be clear and it was, but we absolutely wanted that peace of mind for treatment purposes. The procedure was not bad. The worst part for my daughter was that the nurse could not get the IV in and that was miserable for her, but other than that it went smoothly. Is the IBD serology the prometheus test? i had asked about that back when but the GI said no point as insurance wouldn't cover and not always accurate. Just curious how others handle the unclear diagnosis.

 

[my little penguin]

Honestly it’s better to have a complete picture as soon as possible
The blood test to determine UC vs Crohns is really not that accurate
A lot on here had it say one thing only to be another

Definitely get the MRE as soon as possible
Since ibd is evil and the more you know the better able her docs will be able to keep things under control

 

[Maya142]

I would also get the MRE - it's better to know what she has because it could impact treatment. With UC, they may let her stay on Asacol, but if it's Crohn's, they may want to add an immunosuppressant or biologic.

My daughter has had two and while they are not fun, they haven't aggravated her IBD.
Drinking the barium is the hardest part for her. Take an extra set of clothes for her and for you, in case she throws up.

She will also get IV contrast.

My daughter tends to get very nauseous with the oral contrast (barium or breeza) but besides that, the test is relatively easy for her. She is in the machine for about an hour and they let her listen to music of her choice.

Good luck!

 

[Chladnyam]

Thank you all for the feedback. This is probably more my anxiety about putting her through more tests than anything. And the darn prednisone, I just want her off of it, so I really don't want to rock the boat if this test has any potential to disrupt her progress. I appreciate the opinions and support!

 

[crohnsinct]

MRE had no negative affect on my daughter's Crohn's....her wardrobe yes but disease stays no:shifty:

 

[Maya142]

Take shoes too!! My daughter threw up all over her leggings and her shoes and was so upset because we had forgotten to take clothes.

 

[Chladnyam]

Well, she had the MRE done. She did great! She didn't have any side effects and it did not aggravate her IBD, so that was a huge relief. The report came back and was all clear. It still doesn't give us a positive diagnosis(UC vs Crohns), but at lease we got a full picture of her IBD at this point in time. We slowed her prednisone taper down to 5mg per week. That has gone well too, and she is supposed to take her last dose this Sat. The prednisone has been hard on her. She gained 20 lbs and she talks almost daily about how bad it makes her feel about herself. Does anyone have any feedback as to how long it takes for some of these side effects (moon face, weight gain, increased blood pressure) to subside? I am also curious if EEN is used for Crohns limited to the colon? If she was to flair again, I would seriously consider this route after watching the toll prednisone took on her. She is also still on the 6MP and has been doing well on it. No side effects and so far her labs are ok. I'm curious how often people have had labs done when starting 6mp to monitor. She has had CBC, Metabolic Panel and Liver Function test done week 1, week 3 and now not until week 8. She is supposed to have levels done at week 8 as well.

 

[Maya142]

We had weekly labs done on Imuran (sister drug of 6MP) for 4 weeks, then biweekly for 4 weeks and then every month for 3 months and then every 3 months.

Every doctor does seem to have a different protocol for labs though. But it is common to do weekly labs in the beginning. Or at the very least, biweekly.

We have one parent here, crohnsinct, whose daughter has severe Crohn's in her colon. She has used EEN successfully. Hopefully she will chime in soon.

The side effects from Prednisone will go away with time. Some of the weight gain might be water retention, so if that's the case, she will lose that weight quickly. I would just encourage healthy eating and lots of exercise.

The puffy face will take a couple of weeks to go away once she is on a low dose of Pred or completely off Pred (varies based on the kid). It's hard to say exactly how long, because it really does vary.

And if it helps, tell her my daughter has also had a VERY hard time with the weight gain, moon face and all the side effects that come with Prednisone. She hates them. But slowly, they do go away and she will begin to look and feel like her normal self.

Pred is a drug we all have a love hate relationship with. It comes with awful side effects if used in the long-term - Cushing's syndrome, adrenal insufficiency, low bone density, diabetes etc. but is also sometimes VERY necessary.

 

[crohnsinct]

Hi there! Yes, my older daughter had severe Crohn's disease mostly confined to the colon and rectum (only other area was stomach) and she responded beautifully to EEN. One of her friends has UC and she had an awful time with prednisone. After she saw O's response to EEN she asked her GI if she could try it and it worked! She now hits all flares with EEN instead of steroids. I think kids have a better response to EEN than adults.

Good Luck!

 

[pdx]

Thanks for the update! I'm glad to hear that the MRE went well, and that it was clear. I don't have any experience with prednisone, but I hope that the side effects pass quickly for her.

 

[Jelly loves Peanut butter]

Sorry to hear your daughter is going through this. It is so hard to see your kiddo in pain. My son has crohns and started on prednisone and 6MP. I wish his GI would have told us about een so we would have had the option of that vs prednisone . He too gained a lot of weight...was down to 70 pounds and after prednisone went up to 96 pounds in 3 weeks! Also he had the moon face and acne... all of which really made him self conscious for quite a while. That was back in sept 2016 and he never really lost the weight but he has grown a couple inches since then and the acne and moon face have gone. Also he couldn’t play sports until recently due to his arthritis so that probably was a factor with his weight. As for the 6MP, he had weekly blood draws for levels for about 3 months. Things do get easier with time but honestly I still wake up and wonder why all this happened to my son and sometimes it is still hard to accept. I wish all the best for you and your daughter.

 

[Chladnyam]

Sorry to hear your daughter is going through this. It is so hard to see your kiddo in pain. My son has crohns and started on prednisone and 6MP. I wish his GI would have told us about een so we would have had the option of that vs prednisone . He too gained a lot of weight...was down to 70 pounds and after prednisone went up to 96 pounds in 3 weeks! Also he had the moon face and acne... all of which really made him self conscious for quite a while. That was back in sept 2016 and he never really lost the weight but he has grown a couple inches since then and the acne and moon face have gone. Also he couldn’t play sports until recently due to his arthritis so that probably was a factor with his weight. As for the 6MP, he had weekly blood draws for levels for about 3 months. Things do get easier with time but honestly I still wake up and wonder why all this happened to my son and sometimes it is still hard to accept. I wish all the best for you and your daughter.[/QUOTE

You are so right. It is hard to watch them go through all of this as kids.
My GI(I have UC) told me at my last appointment that he thinks they will find a cure in my lifetime. I went back to my car and cried! I really hope he is right. I called her Dr. and asked if they would add an extra round of labs so we didn’t have to go so long in between. They agreed so that is good. The bad news is that just yesterday, she had a loose stool then diarrhea after dinner. Then diarrhea again this am. No blood. She was supposed to do her final taper Sat. Dr. Says to continue with the taper and is doing a stool test and looking at her labs and to call if worsens over weekend. Anyone have diarrhea when this low but have it resolve? Hopefully it is just a hiccup but I worry. I know it takes about 10-12 weeks for 6mp to kick in. She is also on ASACOL 800 mg two times a day.

 

[crohnsinct]

When was her last fecal calprotectin? Is there one included in this. Etc set of labs? If not I would ask for that as well. Could be a blip but could be inflammation sneaking back in.