Second opinion?

[momtob]

My 11 year old was diagnosed Crohn's in August after years of problems. After an early August hospital stay and double endoscopy he was diagnosed and put on Mesalamine/budesonide. We weaned off the budesonide in early November so he has just been on the Mesalamine. He had an MRI done as well and there were "suspect" areas at the end of his small and beginning of his large intestines. We had a repeat double endoscopy at the beginning of December and I we just went in yesterday to meet with his Dr. and go over his plan. Basically, he hasn't grown in a year. He still has lots of inflammation everywhere except his colon and also high levels of calprotectin as well (I'm sorry I currently don't have specific numbers for any of this) His symptoms are loose bowel movements 5-ish times a day (mostly with no major urgency) and he also has some joint pain and fatigue. Very poor appetite, too. The doctor is recommending remicade infusions to start asap as the next step. I'm hesitant and don't know what to do?? I've posted here once before and everyone said mesalamine isn't used to treat crohn's - but that is all he's ever been on? I'm currently working on getting a second opinion - most likely at Boston Children's and thankfully we have the resources to make that happen. We live in Atlanta and his doctor is a part of the main (and really only) pediatric GI group here so it seems like we will need to travel regardless.

Does anyone have any advice at all? I'm very overwhelmed with all of this and just want to do what is best for my boy and have no regrets or second guess myself.

Thanks

 

[Carolina*]

My soon to be 11yo daughter was diagnosed with Crohn’s a couple of months ago. She was put on mesalamine and it is working for her but she is a milder case confined to the colon only. It does sound like you need a medication change. I was terrified of the “scarier” drugs but now have a much better understanding of them since reading on this forum. I’m sure the more seasoned posters will chime in, the statistics are not as scary as they seem and for many the new drugs are life changing. My daughter is drinking 2 of the 360 calorie boost shakes a day trying to put some weight on, thankfully she’s been steady on her height curve so far. Hang in there and hope you get some more helpful advice soon!

 

[my little penguin]

Tagging Clash



If you child isn’t growing or gaining (either one ) then the medicine isn’t working for your child
Children are growing and gaining machines
That is a big red flag
High fecal cal is another flag that the med isn’t working
Your doc wants to change meds because the inflammation isn’t being stopped and damage may be done .

Every single parent here has wanted the milder meds to work or diet only to work
The reality is that percentage is beyond small

I cried for weeks and got physically ill when my Ds had his FEW remicade infusions
I am not going to lie
Is was the most difficult thing - since he was suppose to have mild Crohns
That said a week after the 3rd infusion (7 weeks from the start)
I had a new kid
I didn’t realize just how sick he was
His swim coaches commented teachers commented
They couldn’t believe the difference
He then started to gain weight (50lbs) and grow after years of being stagnant (losing weight )
That was over 7 years ago
Now you wouldn’t know he has Crohns
He is normal height for his age and weight
Still growing
Hitting Crohns hard before puberty is very important
You can’t get the time /growth back


Also know
When a child stops growing /gaining that’s the bodies way to protect itself
It’s not getting absorbing enough nutrients
Next step it does is stop brain development
Then it shuts down organs
It’s not simple just having a small kid

7 years of biologics - Ds is now 14
I can say I don’t think twice anymore
And am more than greatful they gave my kiddo back
I just hope everyday
They will keep working as long as possible

 

[Maya142]

You're right that usually mesalamine is not used to treat Crohn's. This is because it only treats inflammation on the surface of the intestine, but with Crohn's, inflammation affects all layers of the intestine.

Anyway, it sounds mesalamine is definitely not working for your kiddo.

A second opinion is a good idea, even if it just gives you peace of mind. I would guess they will suggest Remicade considering the amount of inflammation, the high Calprotectin and the fact that he has not grown.

Have you considered supplemental Enteral nutrition (EN) for growth and weight gain? Some kids can tolerate Boost/Ensure but if there is a lot of inflammation, he may need a more broken down formula that is easy to digest. Boost and Ensure are polymeric formulas, while something Peptamen Jr or Pediasure Peptide are more broken down and are semi-elemental formulas. They do taste worse than Boost/Ensure, but some kids have no trouble drinking them. Other kids, like my daughter, went to using a feeding tube. A feeding tube sounds VERY intimidating, but it really isn't.

There is also EEN (Exclusive Enteral Nutrition) which induces remission. It is a formula only diet for 6-8 weeks. It can be done by drinking the shakes or through an NG tube. It is used instead of steroids, to give the maintenance medication (in this case, probably Remicade) time to kick in. The maintenance med then keeps the kiddo in remission.

Some doctors allow 80% formula and 20% food which is easier on the child and usually works as well as 100% formula.

We were very hesitant before my daughters were put on biologics. I worried and worried - had many sleepless nights worrying. Finally, it seemed like my daughter's quality of life was so poor that we had to do something. The disease also becomes scarier than the meds if you think about the complications that come with long-term inflammation - surgeries, abscesses, fistulae, obstructions, poor growth, late puberty...

We started with Humira. Once we went on biologics, we never looked back - have never regretted it for a single second. They really changed my daughters' lives.

I'll tag some parents so you can hear from them:
my little penguin
crohnsinct
Pilgrim
Farmwife
pdx
Mehita
Jmrogers4

 

[DanceMom]

Atlanta has a very good GI Department. We've actually been twice for second opinions. Who are you seeing there?

(Definitely not discouraging you from seeking another opinion, just thought I could recommend a local doc if you're not confident in yours.)

 

[pdx]

Yes, the decision to start biologics is hard! But we are another family with no regrets. Remicade (along with methotrexate) has worked well for my daughter. EEN also worked well for her while waiting for Remicade to really kick in. (It took almost 6 months in her case, although it doesn't always take that long.)

I think it's never wrong to get a 2nd opinion, but based on what you've told us in your post, it seems like most doctors would say to start Remicade at this point. I hope whatever treatment plan you decide on works well and quickly for your son!

 

[crohnsinct]

Hi there and sorry you are facing a med change.

I think the others have pretty much laid out the facts that it is obvious your child needs to change meds. Not surprising as mesalamine's track record with Crohn's is not great and where it does work it is usually colonic involvement not small bowel.

I think second opinions are great especially if you just need to hear it from someone else, however, know that you are likely going to just hear the same you are hearing where you are. Are you at Children's Hospital of Atlanta? They have a very good pediatric IBD program and I would trust them 100%. Boston will likely echo the Remicade statement. If you are looking for another option perhaps consider CHOP as they do a lot of research with Exclusive Enteral Nutrition and use it a lot but the success is limited.

There is an intermediate step before the biologics and that would be the immunomodulators but they take a long time to work (could be up to 12 weeks) and are only effective 50% of the time. They actually have a worse safety and risk profile than Remicade. Remicade so far is the safest and most effective drug for pediatric Crohn's.

My older daughter has been on Remicade for 6 years and it has been wonderful. Looks like she is starting to lose response to it and we are doing everything in our power to hold on to it because of how well she has done with it...treats disease, she f=grew, gained weight, no symptoms, no increased illnesses or infections.

My younger daughter has mild Crohn's and tried EEN and methotrexate and steroids for a year. Nothing worked. We moved to Remicade two years ago and have never looked back. WE literally never think about Crohn's other than once every 8 weeks when she has to go to infusion.

Good luck!

 

[Jmrogers4]

Have to say I'm another remicade supporter and I fought against it for a long time. For us the lack of growth/development was a major symptom and went on for far too long. My son had always said he didn't want remicade, I think he was a little afraid of the infusions. He said to me he didn't care what it was but he didn't want to keep on as he was (with his friends growing and he wasn't). It was that along with some imaging showing inflammation still present that we all finally agreed that something else needed to happen and we had tried pretty much everything in the "lessor med" category including combining a mesalamine alongside Imuran didn't make a difference. Remicade brought him complete remission he has been on it for 4 years. He ended up passing up his peers in height pretty quickly going from 5'1" to 6'1" now (grew 9" over one years time).

 

[momtob]

Thanks everyone! Ok I have no idea how to tag people or use quotes - however DanceMom, I would love to hear your thoughts on any Atlanta doctors. There is one main GI practice here, GI care for kids, and they are very well respected and basically the authority. That is the practice my son is with, however he is with a pretty young doctor. I have had other local doctors suggested to me, however they are ALL with that practice. Is it kind of pointless to get a second opinion from another doctor within the same practice?

I definitely just need reassurance, and also I don't feel like any other options have been laid out for us (including formula, etc) however it sounds like there are just NOT a lot of options here. He has been drinking the boost drinks since August and they aren't doing much obviously, though he likes to drink them.

THANK YOU all so very much for responding. This is all very helpful info for my husband and I!

 

[crohnsinct]

Personally, I wouldn't worry about your doctor being younger. If he/she is in the practice they are up to snuff and I find the docs in the practice talk often. Plus your doctor is suggesting a plan that is pretty main stream and solidly backed with evidence.

I wish docs knew better how to present things to parents. They sometimes just rush through because they have seen it all and are very familiar with what happens etc. They forget that this is our first time with the disease and need a little more info in order to process what we are being told.

You are right. There are not a lot of options below biologics. There are 5 ASA's (which he is on), EEN/diet, and immunoodulators. All less than 50% effective. Once you get up to the biologic level you have more choices but the standard first try is anti tif (Humira and Remade). Remicade has the best track record, followed by Humira. The reason Remicade is used with growing kids is the dosing and schedule is highly customizable as they gain weight etc.

There are numerous studies that have proven that early use of the anti tif's can change the course of the disease and severely lessen the chance of surgery down the road. Our kids have a long life with the disease and because of the number foyers with the disease have a higher risk of surgery to begin with. Getting the disease under control completely and quickly is key to avoiding surgery. Not to mention capitalizing on growth, bone density etc.

 

[Jmrogers4]

to quote just click on the quote button bottom of box of post you would like to quote. To tag someone you would just type their user name although it only works if they have not posted in thread already so quote would be your best option to notify dancemom. She's good about checking back so I'm sure she will see it anyway.
What about a peer review within the office, my son's GI has done this and discussed with other GI's in the practice as they are the only pediatric GI's in the state. Sometimes they've agreed sometimes we've changed things up because they brought a different insight. I've even come to an appointment and had GI's say we were discussing Jack's case and we think we should try "x, y, z"

 

[Maya142]

He may need to try more broken down formula like Peptamen Jr, because it is easier to absorb, especially when there is a lot of inflammation.

But I don't think you will see a lot of weight gain or growth till you get the inflammation under control and you need a different, more effective medication to do that.

I wanted to add that my daughters have been on biologics for 7-8 years - all through middle school, high school and now college (one graduated and one is in college). We have had no issues - no increase in infections, no side effects.

My younger daughter was put on Remicade when she was diagnosed with Crohn's. She was already on MTX because she also has juvenile arthritis. At diagnosis, her scopes showed ulcers in her colon and inflammation and bleeding in her terminal ileum. Remicade + MTX took 3-4 infusions to really work, but within 6 weeks or so, she was feeling a LOT better.

8 months later, we scoped and her colon looked "perfect". Everything had healed - it looked normal!! She still had mild inflammation in her terminal ileum but it was a huge improvement. Remicade really worked well for her Crohn's.

We have never gotten a second opinion within the same practice, so I can't comment on that. But I would guess for a more objective second opinion, it would be better to go to a different hospital.

 

[Farmwife]

Hey another remicade fan here.
My girl was dx at 3 but it's almost 9 now (how does that happen, lol.)
She's been on Remicade and multiple other meds.
She's also been on EEN/EN for over 5 years.
As said above your child might need an easier
to digest formula.

 

[DanceMom]

We saw Dr. Kugathasan and Dr. Sauer at CHOA Egleston. Dr. K was recommended to us by our local GI when we thought we were dealing with Crohn's.

 

[Mehita]

Another Remicade fan! We did go the route of 5ASA to immunomodulators to biologics and I wish we'd just started with Remicade, but our insurance required a bottom up approach. About an hour into his first infusion, he asked for food. That was a jaw dropping moment for us! Shortly after he was considered to be in remission at all levels and we haven't looked back since. It's been just over four years now with no issues except a dosage tweak early on.

Like the others have said, it never hurts to get a second opinion or even a records review from another doctor. We've had three GI docs since dx non years ago and all had very different opinions. Good luck!

 

[my little penguin]

We also did not one but two second opinions
The first time changed the treatment plan
The second opinion doc promptly told our GI that Ds was not improving on 5-asa
And to give him 6-mp plus steriods

The second second opinion
didn’t change treatment plan
Remicade was agreed by both teams

For us it was well
Worth it
Fresh eyes are a good thing
We did go to a separate hospital
Since our GI told us they have staff meetings to discuss
Complex kids so if we saw someone at our hospital
It would not be a fresh set of eyes

Our GI helped us get the second opinion


and was very happy about it

So were we

 

[Clash]

My son goes to GI Care For Kids. He's was dxed at 15 he'll be 22 this September.

We have always loved our GI. C is loathe to know he'll eventually have to move to an adult GI. Weve had a really great experience as far as GIs.

I agree with the others about getting a second opinion, it cant hurt and is woth it if it will give you peace of mind.
It's a fresh set of eyes and it doesn't necessarily mean you'd have to change docs afterward. CHOP and other IBD centers will do a records review and give their opinion as well.

My son's case is complex. He's had surgery, an ileocecectomy and last year he opted for a G-tube which was recently switched to a mic- key button. All the meds habe failed him so far. He's on Stelara right now. He hasn't had symptoms since diagnosis and the start of his first med, remicade. It was such a miracle med as far as symptoms went. Alas, my kid is one of the one is didn't fully help (though I think it does turn most kids right around and provide lasting remission).

The protocol your doc is following seems to be fairly mainstream and not at all out of the ordinary. If you want to try formula bring it up. The compliancy rate is pretty low in America and the docs get a lot of push back from parents and kids because it is difficult but our doc was eager to allow my son to try it when we brought it up (my son first did Exclusive Enteral Nutrition through an my tube several years ago around 16)

 

[Optimistic]

Hi Momtob. You don't have many options in ATL. GICFK is dominant. While their are two more prominent drs, I think the practice uses some team thinking. They also seem to have good connections to the top children’s IBD centers in other markets. That being said, you shouldn’t have much problem getting a second opinion at Boston, Cincinnati or Phil.

Good luck.

 

[Jelly loves Peanut butter]

My son is also 11, diagnosed at age 9. He was initially started on 6MP which worked well for his crohns but took several months for his symptoms to improve. Even though his GI symptoms were under control he had a lot of joint problems and continued to have elevated sed rate and crp for over a year. He started seeing a pedi rheum and he took him off 6MP and added MTX and remicade, diagnosed also with juvenile arthritis. After 2 infusions his inflammatory markers normalized and his GI AND joints were symptom free. I know the ache you feel in your heart when trying to make the best decisions for your kiddo. I think most all of us parents have felt that way and still feel that way sometimes. You can always find a lot of support here...I did when I really needed it. Best wishes and hope your son starts feeling better soon !

 

[momtob]

Thank you so much everyone!!! So much amazing information here!! I’ll post back when we take the next step

 

[polly13]

I would get a second opinion as it will give you some peace of mind and help you with your decision and you will know you have done your best to the get treatment plan for your child.

I would absolutely echo what everybody else has said about biologics - they are very scary drugs on paper and like everybody who has posted already we agonised, cried and agonised some more before we agreed to use them on our daughter and she hasn't really looked back since. Lucy is now 9 and on biologics since she was 3 and it was the most difficult decision my husband and I every made and as I think MLP said - we got our kid back and thats gold. We dont even think about crohns anymore except when she gets her injection.