Second opinion...

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Worried mama

Worried mama

Joined
Sep 16, 2014
Messages
188
We went for our second opinion today. This dr. ( dr. #2) has more experience and is associated with a very reputable childrens hospital. Dr. #1 says moderate/severe crohns, wants to start remicade with Mtx. Dr. #2 says it's mild, wants to start on Pentasa. Says it's mild because he feels ok, D is not severe and he's not losing weight (although he also hasn't gained much). Hmmm...I think we are inclined to go with dr. #2 because we want to believe its mild and Pentasa is not as scary...why such different takes? Meeting again with Dr. #1 tomorrow to discuss more and I'll get more info on why he thinks it's not mild.... Feel free to share your thoughts. Tx.
 
Few things
Pentasa has been shown to not effective to treat crohn's as a monotherapy.
Rating of crohn's in kids depends on a lot of things.
http://www.cincinnatichildrens.org/WorkArea/DownloadAsset.aspx?id=87937

Most kids fit the moderate category.
Knowing what I know now
I would loves to have started remicade first since it has been to give kids the best chance at not progressing to surgery .
We started DS similar to your dr#2
Pentasa - DS just got sicker
EEN plus 6-mp
Eight months of waiting for that to work with pred as well.
After that went to his liver DS was placed on Mtx plus pred.
After three months and two bouts of vasculitis
DS was finally switched to remicade one year later ( sick the entire time).

No one wants the scary drugs but most gi's equate pentasa to giving aspirin for a brain tumor not going to hurt but not going to help much either.
 
Pediatric crohn's is actually different from Crohn's in adults - it is generally worse and can spread (involving more of the GI tract). Plus kids still have to grow and develop, so you really don't want them malnourished. There are many studies that support this.

We started with Remicade and MTX (mostly because my daughter was already on a biologic for her arthritis so we just switched to one that would treat both the Crohn's and arthritis). I can honestly say that I have never regretted it. Within a year her scopes looked MUCH better and she only had mild inflammation in her terminal ileum - they were clear everywhere else!

Honestly, only a doctor can advise you but since opinion 1 and opinion 2 were so different, you're in a difficult position. But there are plenty of kids that don't have symptoms and have severe inflammation, so I'd be inclined to believe doctor 1. Tagging Clash - her son just had surgery and yet had only a few symptoms.
 
It is disconcerting when doctors have such differing opinions. Why does doctor #1 say it's moderate/ severe? Is that based on imaging, endoscopy, labs?
 
Yes my son was dx'rd over 2 years ago and was having a lot of symptoms. C started remicade shortly after dx. Once we got past the loading doses C couldn't stretch to 8 weeks because symptoms would return. So we shortened the schedule, then upped the dose, added methotrexate. We later upped his remicade dose again.

Last year his testing, MRE, colonoscopy showed simmering inflammation which was corroborated with fecal calprotectin test. 3 months later his fecal calprotectin result was 48. He was having no symptoms, no pain, no bad bms, no mouth ulcers, nothing. But he was not gaining weight well so we did another colonoscopy and then a CT scan. Since it was affecting his weight and there was simmering inflammation surgery was decided upon.

Even though his testing never showed severe inflammation the surgeon said the area was chronically inflamed, with deep ulceration, fissures of the intestines and generally a mess. He couldn't believe C wasn't experiencing outward symptoms.

His colonoscopies did not quite reach the worst of his disease but that area looked no different on the MRE than where the scope could visualize.

It may be that tnf alpha blockers don't work for C. We are giving remicade another shot bit will move on if it doesn't work.

This disease can be insidious and silent, so regardless of your treatment regimen it is a good idea to get regular testing. I'm glad C started at the top with the big guns. He was initially placed on steroids but they made no difference. If I had it to do over again, knowing how this disease can progress I would choose the big guns again.
 
Last edited:
I can just reiterate the points others said about pentasa and activity in children diagnosed with crohn's. Pentasa has an anti inflammatory effect for sure, it works great for many UC patients in the colon, but studies say taking only pentasa for Crohn's is not more effective than placebo (i.e. It means about one third of the patients on pentasa can stay in remission or with little symptoms but that is only slightly more than people not taking anything).

If at all possible, I would consult a third GI. I would be irritate with the suggestion to use remicade and MTX. MTX is only used (at least as far as I know) if immunosuppressive treatment with 6mp/aza was used but failed and immunosuppressive therapy should be continued.
 
Difficult decision for you. We were kind of in the middle of your 2 options. My son is classed as mild, although he has one fistula. Pentasa was never mentioned at all, we went from EN to Mercaptopurine which he has stayed on since.
 
Mtx is used in combo for kids with remicade to stop the production of anti bodies and increase duration of remicade since 6-mp plus remicade is found to increase T cell lymphoma risks in young kids.
 
That is confusing. It's what I hoped to hear when I took my child for a second opinion, but I didn't. I think the Pentasa recommendation is unusual for kids. Where is your son's Crohn's located. When I asked our second opinion dr (large teaching hospital) to classify my child's Crohn's, he said that depends on how it responds to treatment rather than what he sees on first scope. They is so much variation when it comes to IBD and approaches. Doesn't make it easier on us as parents.
 
I just searched on your old post and you didn't mention inflammation in multiple locations on colonoscopy. How was the EGD? Also sounds like you haven't had the MRE yet- am I right? I'm surprised they are not holding off on med recommendations until that.
 
Thank you all. I'm so confused on what to do. I'm meeting again with first dr today to find out more on why he thinks mod/severe. We did just have the MRE and it did not show any narrowing or strictures...a little inflamation. So, seems like my sons inflamation is mostly in colon and terminal ileum for most part. But, when first dr said mod/severe he was relying on the first set of scopes...he did not have MRE at that time. I might ask dr today if he can consult with one of his colleagues, but not sure if he would just agree with the first one....I just don't know.
 
We started with Pentasa. It helped some, but was not enough to relieve all symptoms. I think for some kids it could work because all kids are different. The only way to know if it will work for your child is to try it.

I hope your doctors will work together to come up with the best plan for your child. A plan that everyone is comfortable with!
 
worriedmom- my child's crohn's is pretty much throughout large colon and in terminal ileum and ileoceccal valve. Nothing in small bowel. Maybe related inflammation in stomach- not sure. Remicade was recommended. But the Crohn's was obvious on the colonoscopy. it wasn't microscopic. Maybe that makes a difference?
 
All other symptoms aside that you have mentioned on other posts perhaps the 1st doctor is also going on the fact that your son has not grown in 2 years. Just my personal opinion, and I may well be wrong, but in view of the fact that diarrhoea has been an issue only recently then I would find it difficult to connect mild Crohn’s with that level of growth delay for 2 reasons:

1. If his appetite is poor enough that he is consuming so few calories to cause such a significant delay then his symptoms must be impacting more than realised or is obvious.

2. If it is due to poor absorption of nutrients then again, I fail to see that mild inflammation would have such a significant impact.

Dusty. xxx
 
Thanks for the input, this is a hard decision. Dr #1 is basing his decisions largely on the lack of growth, but other dr is not convinced the lack of growth is caused by the crohns. Dr #2 has been a pediatric GI for over 20 years. Dr #1, who is suggesting remicade has been practicing pediatric GI for only 3 years. For now we've decided to give the a Pentasa a try, if it's not workng, we can always move up from there, I feel like we at least have to try it before ruling it out. I don't want to give my child the big guns if it's not necessary, ya know? But if nothing else works, then will we go there. We also see our Endicronologist on Monday so we will ask if he thinks the crohns is the reason for poor growth.
 
Glad you have a plan
But typically crohn's does cause major growth delay in children
This has been very well documented .

Pentasa typically works quickly so if it hasn't worked in thirty days it's not going to work
Please make sure to educate your self
Here is a link on why the big guns are used early in children

http://www.globalacademycme.com/cli...-crohns/1912d260db81cea0b46dd5eee9134a23.html


Also a ton of papers on growth /drugs options /pediatric crohn's.

http://www.crohnsforum.com/showthread.php?t=43002
 
Worried mama said:
Thanks for the input, this is a hard decision. Dr #1 is basing his decisions largely on the lack of growth, but other dr is not convinced the lack of growth is caused by the crohns. Dr #2 has been a pediatric GI for over 20 years. Dr #1, who is suggesting remicade has been practicing pediatric GI for only 3 years. For now we've decided to give the a Pentasa a try, if it's not workng, we can always move up from there, I feel like we at least have to try it before ruling it out. I don't want to give my child the big guns if it's not necessary, ya know? But if nothing else works, then will we go there. We also see our Endicronologist on Monday so we will ask if he thinks the crohns is the reason for poor growth.
Click to expand...

Good that you made a decision. It will, however, be important to not be complacent once he starts Pentasa and "get used to" Crohn's symptoms or believe that a slight decrease in symptoms while there still are clear symptoms means there is no inflammation (for my first few years after the diagnosis I was on Pentasa only and I got used to symptoms, diarrhea, cramping, problems after meals etc. and thought that is just the way it should be - it is not, remission without inflammation means virtually no symptoms, that is no diarrhea, no cramping, no pain, no bloating).

It is usually good to set some kind of goal or time limit to see whether a long term treatment approach works and then revaluate the decision, for instance 3-6 months. Within that time period, a journal on daily symptoms can provide a good indication whether the activity of the diseases has really gone down towards remission or whether it has not. If the latter, then, in order to avoid the scaring in the intestine and damage that (even if low) inflammation does, the standard long term Crohn's meds should be considered. Pentasa may be the drug that is still prescribed most often for mild Crohn's cases, but unfortunately as a mono therapy it is statistically also the least effective of the drugs available.
 
It surely is a hard decision Worried mama. :ghug: Is there anything more difficult than having to make these sort of decisions on the behalf of the one person we love more anything else in this world? I think not and at the end of the day there are no right or wrong decisions just different ones.

It is good you have a plan a way forward hun. You need to go with your gut and you have done that. :) We carry enough guilt to last a thousand lifetimes as it is and the last thing you need is the worry of is the what ifs. Please be sure and look back at this if Pentasa doesn’t work and rather than beat yourself up about it, lord knows we all have 20/20 vision in hindsight and isn’t that a bitch! :lol:, see that you made your decision based on what you know here and know and with the knowledge and guidance of your doctor and most importantly of all with nothing but love and your son’s best interests at heart.

There are many diseases out there that have very clear cut boundaries in both diagnosis and treatment and very often in response too. Unfortunately when it comes to our kids they are lumbered with a disease that is like being stuck in a maze when it comes to both diagnosis and treatment. Choose one route and if all the gods smile on you at once you hit the right combination and achieve remission. Choose another route and round and round in circles you go. *sigh*

As has been said above, just be sure and set yourself realistic time frames. Not because it is Pentasa but with any treatment you may find yourself with. My catch cry is: Don’t ever become so enamoured with one form of treatment, no matter what it is, that you fail to see what is in front of you. :ghug:

Good luck mum and I hope your son is soon feeling on top of things, bless him. :heart:

Dusty. xxx
 
Thanks so much everyone. I know this is not the popular choice but I'll sleep better at night knowing that we tried. If we have to go to the big guns, at least I'll feel better knowing we tried the other stuff first. We will def monitor closely and make changes if needed....I'm puttng a lot of faith in this dr who comes highly recommended from one of the top childrens hospitals. We can only wait and see at this point. I appreciate your advice, honesty and support...
 
We were actually in a very similar situation when my daughter was diagnosed earlier this year with two doctors recommending different treatment courses. We went with the doctor with more experience who recommended Pentasa and 6-mp. Unfortunately my daughter had a bad reaction to the 6- mp and we've moved onto Remicade, but I echo your sentiments of the peace of mind that comes with knowing you at least tried the less powerful drugs. It made the Remicade decision easier and I know I won't look back and wish we'd tried something else first. Good luck! I hope the Pentasa works for your child!
 

Similar threads

P
How long on EEN before your child had solid motions again
Replies
5
Views
745
padrach3
P
nelsonshan
Change from Entyvio to Stelara or Skyrizi??
Replies
5
Views
582
Maya142
Maya142
C
Your thoughts, please. 10 yr old.
Replies
14
Views
1K
Crohns dad
C
A
Am I crazy?
Replies
1
Views
1K
Opieshuffle13
O
S
Two year old with symptoms
Replies
22
Views
3K
J100
J

Latest posts

Back
Top