Introduction, new diagnosis

[JSG]

Hi - so glad to have found this forum! In a bit of a whirlwind, my son (11) has just been diagnosed with CD. During his annual physical, our pediatrician noted slow growth and ordered blood work, suspecting CD. Results led us to the GI. Within a month we had a definitive CD diagnosis following endoscopy, colonoscopy, and biopsies.

Growth (and increasing fatigue) were/are the only symptoms. No notable pain, no need for frequent bathroom visits, no signs of bleeding, etc. This is all the more amazing considering that it's a moderate-to-severe case with inflammation in multiple spots (but no fistulas).

We're now facing a treatment decision, which feels even more wrought because we know he is sick, we know growth/development is a very serious issue at his age, but we're not dealing with pain. There are obviously no "perfect" choices, just trying to make the smartest choice for his needs.

This is made more difficult because original GI (who diagnosed and will likely be the one to treat) and second-opinion GI have a noted disagreement. Dr #1 favors 6-MP with a short course of steroids. Dr #2 favors Remicade. After reading what I can on my own, I lean toward the Remicade. Our pediatrician (who has a lot of experience with CD and several current patients with CD) seems to agree with my reasoning and her patients on Remicade have had good experiences.

Dr #1 will definitely support the choice, if that's what we decide, but it's very clear that it's not how she would choose to proceed. She even suggested getting a third opinion first. Emphasized Remicade side effects, though none of them sway me as much as the (admittedly very very very very low) lymphoma risks (especially for boys) with 6-MP in the mix. I lean toward the top-down approach for several reasons.

For now, while we continue to discuss and perhaps get the third opinion, we lean toward doing a trial run of the SCD, to see if we can stick with it for 6 weeks/enough time for follow-up testing to assess early results. And if that doesn't work out, then we'll likely proceed to the Remicade, but I do feel like it's worth a 6-week investment to see if SCD is at all viable/effective as treatment.

Recent SCD studies (and some of the success stories on these boards) , encourage me enough to feel that a trial run with diet isn't wholly irresponsible. Neither doctor dismissed it outright.

Any thoughts welcome, especially when it comes to navigating between the two strong personalities and personal treatment preferences of Drs 1 and 2. Everyone is ready with a horror story about the -other- treatment. But the hstcl compels me more than Dr #1's bad Remicade stories, and if starting with Remicade monotherapy works, I'd rather not start with the 6-MP that would always matter if we end up with Remicade later anyway. And, of course, I'd love if SCD was a miracle... but I realize those odds are probably slim.

Thank you!

 

[Optimistic]

Hi. I am sorry to hear about your son. I guess having the diagnosis is actually first step in helping him grow and attacking that silent inflammation.

My son has been treated with SCD and partial EN for two years. He now has clean biopsies and no symptoms other than being skinny for his height which is probably genetic anyway. He also had 4 months of steroids and a course of EEN before he started SCD. He was very sick and a moderate to severe case, and ending that first flare was hard.

Our plan was to go to Remicade if SCD didn't work. You've probably seen the studies on SCD including a newer one from Seattle. There are several others underway that should be published in next year. The headline for many studies though is SCD must be followed militantly to get optimal clinical results. One study underway, while still in progress, is showing SCD with far greater clinical results than other IBD diets and clean eating approachs. I just heard of some plans for a test of SCD with Remicade.

SCD isn't easy to follow! There are some lifestyle and social tolls. And most drs require extensive monitoring if you try SCD - labs, FCP, scopes, plus.

Good luck!

 

[crohnsinct]

Hi there. Welcome and I am so sorry for the whirlwind you have been su unexpectedly thrown into. I am not on here much but popped on while waiting for an appointment so thought I would respond.

I have two daughters with Crohns. Both presented pretty similar to your son. No one caught my first daughter until her first horrible flare which ended her in ICU (that's what untreated disease can do). For my second daughter, we were all smarter and she was dx'd mostly on just no weight gain, stalled growth and some stomach pain.

Most docs these days do prefer the top down approach. The anti tnf biologics have a better success rate when used early and can change the course of disease. There are also many studies out now that show that Remicade has no increased cancer risk. There is a good amount of data that says that using an immunomudulator (6mp, Azathioprine, Methotrexate) helps keep antibodies at bay. So, I would suspect your Remicade doc would want to add Imuran (sister drug to 6MP) to his treatment along with the Remicade. A lot of docs (especially those treating boys) are moving to using Methotrexate with the anti tnfs as that has helped prevent antibodies and shown no increased cancer risk. So I would just make triple sure if you are agreeing to Remicade that the plan would be Methotrexate and not 6MP (not saying 6mp is bad, just going by your preference).

Honestly, I find the risk profile of the biologics a lot easier to swallow than the immunomodulators. There are plenty of risk studies here in the parents forum. Maybe in the research section?

No matter which method you choose, diet or drugs, please keep in mind that attacking and controlling the present inflammation is key. So with drugs, it is usually steroids as it takes a while for the maintenance drugs to work. With diet it is an initial 6-8 week course of Exclusive Enteral Nutrition. This is where the kids give up all food and drink except for a formula and water. Actually some centers are having success with 80% Formula 20% Food but most docs do 100%. EEN is just as successful as steroids in achieving remission and has no risks and the added benefit of getting the kids the nutrition they need. Once healed, you can hand the SCD diet or IBD Aid diet (very similar to the SCD with a few minor changes) a nicely healed gut and give it a greater chance at success.

With my first daughter we went straight to Remicade as the situation was dire.

With my second daughter we used EEN. She achieved remission and we slowly added food on the IBD Aid diet and she flared. We added Methotrexate and used diet to compliment the drug. She still couldn't achieve remission without another course of EEN and eventually steroids. We ended up pulling the plug and adding Remicade and she grew 2 inches and gained 17 pounds in a year! No regrets.

Oh one last thing about going to biologics first. If this is what you choose, you are pretty much making a long term commitment and should not stop unless the drug stops working. If you take too long of a drug holiday, chances are high that you will build antibodies and can not go back on the drug. With Immunomodulators, it is possible to step up or stop and go back etc.

You have already seen what silent disease is like. Some kids do not even show inflammation in their blood labs (my younger daughter is like this). For this reason, I want to echo the statements above that careful monitoring is necessary if you use diet (with drugs the docs already do that). As your son has no obvious signs, you would not know what the disease is up to.

Good luck with whichever method you choose!

 

[Farmwife]

My Grace was dx at 3.
We tried everything but drugs.
At the end we did do the meds and Remicade has by far been the best.
There's tons of diet help and advice on ibd on this forum.
At the end of the day it's your choice and we'll be here to lend support.
Hugs

 

[pdx]

I'm sorry to hear of your son's diagnosis but glad that you found this forum. It's been really useful to me for both information and support.

My daughter was started right off with Remicade, with methotrexate added soon after to help prevent antibodies to the Remicade. It's worked well for her, and we're happy that we started right off with Remicade. However, definitely pay attention to what was said above about controlling the current inflammation quickly with either steroids or EEN. We delayed several months in doing that, to see if it might not be needed, and that was a mistake--our daughter got much sicker, and we had a very hard 6 months that involved steroids, antibiotics, hospitalizations, and EEN before we managed to control the inflammation to the point where we could go back to just Remicade and methotrexate.

All that said, however, it sounds like your doctors may have caught the Crohn's relatively early, so hopefully your son will respond quickly to whatever treatments you choose. Good luck!

 

[Maya142]

Hi and welcome!
My younger daughter also went straight to Remicade when she was dxed with Crohn's (partially because she was already on a biologic for juvenile arthritis, so we figured we'd switch to one that worked for both conditions). She was also put on Methotrexate to prevent antibodies. She did great on Remicade - within 8 months, all the ulcers in her colon had healed and her colon looked "beautiful"! She did still have mild small bowel inflammation but even that looked much better!

I worried a lot about biologics before both my daughters were put on them (older daughter has just juvenile arthritis). I worried about the cancer risks and infections and TB. But in the end, it was the best decision we ever made for them. It completely changed their quality of life. I don't even want to think about where they'd be without them!!

The newest research is showing that the top down method works best for preventing complications like surgery. It is also more likely to help with growth -- and it is likely to work fastest.

You are right about the cancer risk with 6MP/Imuran. Methotrexate is safer and is being used more often now to prevent antibodies. My daughter has been on both and I can tell you that I was much more worried when she was on Imuran.

There are certainly some parents whose kids to very well with diet changes, but it is rare. If you do go down that route, make sure your child is monitored very carefully. We have had some kids on here who are completely asymptomatic but had simmering inflammation that eventually led to surgery.

Remicade is a long-term decision - you will typically use it until it stops working. But it is an easy drug to deal with - both my daughters had NO side effects besides a little tiredness the day after the infusion (and that might be because they were given Benadryl with it). Both girls preferred Remicade to any of their other meds because they were able to forget they were sick between infusions. And it's only an IV every 6-8 weeks (usually). Blood work can be done then, so that's one less poke.

I would not hesitate to get a third opinion if you have to. 6MP is being used less and less in the US and especially not as much for teenage boys.

Some kids do ok with Remicade monotherapy but then you do risk forming antibodies and if that happens, your kiddo will likely be put on a different drug - usually Humira which is shots every two weeks (or every week).

Good luck with whatever you choose!!

 

[JSG]

Thank you everyone for your quick and generous replies. So useful.

I do think Remicade is highly likely to become our main strategy within a few weeks. The first decision ahead of us is whether to seek that third opinion, and, more difficult, if we should explore a change in GI before treatment begins.

I do like the current GI and she was really great throughout the diagnostic process. But she's made clear that Remicade is not her preferred course/has tried to emphasize its risks above others. I worry a bit about how the course of treatment will go should bumps and more decisions present themselves (which seems inevitable).

 

[Maya142]

It also might be possible to start Remicade and then switch GI's, if you continue to be uncomfortable with your current one.

I'll tag a couple more parents so you can hear from parents with preteen/teenage boys: Mehita, Jmrogers4, Clash and my little penguin.

I also wanted to add that my daughters quite liked the infusions. They weren't stressful at all - they got to watch TV and nap and miss school !

I don't know where you are located, but the three biggest pediatric IBD centers are CHOP, Boston Children's and Cincinnati Children's.

Here is a good presentation that discusses the risks and benefits of various treatments:
http://programs.rmei.com/CCFA139VL/

 

[my little penguin]

:welcome:
Ds was dx at age 7 and is 13 now
He was briefly on 6-mp at dx
For him he just got sicker
A year after dx they agreed to try remicade (top down was not popular then )
We also did een at first to avoid steroids
But he still needed those anyways
Remicade was wonderfully
And like you we wanted to avoid dreaded
6-mp with remicade
So he did that monotherapy
For 8 whole months till he had two minor reactions
And had to be switched to humira at the ripe old age of 9

He takes mtx with humira to prevent antibodies and for his juvenile spondyloarthritis

He has also been on partial een since dx to maintain normal weight and height
He has tried lots of other diets by themselves never worked
But each kid is different

If you go diet you still need something to get rid of inflammation
Either een or steroids or both
And
If you do diet alone
Have a check point
X number of weeks to determine if it works
X number of pounds lost or gained
Bloodwork below x

Most kids on here who have tried scd
Either lost too much weight
Or flat failed it or both
Optimistic is the only success story
So maybe een and scd combo is key

Good luck

 

[Ricky_V]

Since your son currently is not having severe flare, I would start off with just the 6MP then if condition does not improve add Remicade. I have one daughter in full remission on just 6MP. Once you go on Remicade you will need to stay on it and you will loose the opportunity to see what the 6MP could have done on its own before playing the Remicade card. If you have to go to Remicade you will need to also be on a drug like 6MP anyway to prevent antibody generation. also make sure to get started on the supplements and eating diary to see which foods bother him.



I am not a doctor...Just my take.

 

[CrohnsKidMom]

Welcome to the forum! Sorry to hear your son has been sick. My son was dx'd at age 8 and is now 12. His was considered to be a moderate to severe case. Our GI rcommended EEN, but we went with prednisone for initial treatment, which our GI supported. At the time, our GI favoured the step-up approach:trying imuran (sister drug of 6mp) first, (but my son couldn't tolerate it) then on to methotrexate. That failed after 2 years and now my son is on Remicade with oral MTX. It has worked the best for us. Now our GI favours a top-down approach to meds, and no longer uses imuran or 6mp in boys. So, every case is different and every GI's approach is different-and their approach can even change as time goes on. So, perhaps there is no wrong answer, you will just have to try to choose what is best for your son. Hard decision, I know. All the best to you, and I hope your son gets on the road to wellness soon!

 

[my little penguin]

Forgot to say
Ds dermo recently wanted to change Ds from mtx to imuran with his humira to try and control his Sweets Syndrome
Neither Ds GI or rheumo would approve imuran with a biologic since teenage boys are at the highest risk 6-mp by itself for lymphoma
And T cell lymphoma when combined with a biologic


Big change in 5 years

 

[lcpalmer]

My son was diagnosed about 1.5 years ago. We first tried treating with nutritional therapy and although he gained weight and did not have any symptoms, a follow up scan showed no improvement. We then switched to 6MP (just because taking a daily pill seemed the least stressful for him) but it affected his liver way too much and we had to stop that quite quickly. He is currently on a weekly injection of methotrexate and last scan showed some improvement. We go back to doctor in a couple of weeks and hopefully can continue this plan. He does not have any symptoms but really hasn't gained any weight in past year either. I know the doctor won't like that. It is overwhelming choosing medications for your child as it seems like there is no perfect choice. I agonized over each decision we made. Best of luck, you will make the right choice!

 

[Jmrogers4]

Sorry just saw the tag, my son 17 1/2 will celebrate 3 years on remicade tomorrow and yes I say celebrate. It will be 7 years since diagnosis on March 2nd. We went the Imuran (sister drug to 6mp) route at diagnosis. His symptoms at diagnosis was weight loss, lack of growth, fatigue and stomach pain in the morning. The pain and the fatigue went away for the most part with Imuran however the weight and growth just never really happened. The thought was always any day now he'll start growing but because his labs were always in the normal range we all though Crohn's was under control. We tried SCD (it did help symptoms at the time) but he was so severely underweight and would just not eat the variety or enough to even maintain weight so it wasn't an option for us. We tried partial EN and he did put on weight while on it and even grew an inch so at that point it was decided he just needed more calories. More calories are hard when you just don't feel hungry and we were always reminding him to eat, if we didn't he would go all day without eating since he didn't feel hungry.
Still no growth or weight gain and he was 14 at this point with virtually no sign of puberty and his younger by 2 years brother was farther along and taller than he was now. GI referred us to endocrinologist to rule out other things that could be causing lack of growth development while scheduling an MRE (we had not done one before but scopes about 8 months prior were clean and clear). Endocrinologist confirmed that he was about 2 years delayed and after lots of other testing nothing was wrong while MRE showed massive inflammation in small intestine even though labs were in the normal range (ESR 9, CRP <5; normal ranges 0-15 and 0-10)/
At that point we decided to give remicade a try as something needed to be done and his GI says "maybe he does need it". It was a complete change from the first dose for us, he immediately had an appetite and while it took about 6 months for things to really start moving he was the same kid before Crohn's (you don't really notice all the changes until they are no longer an issue). He has grown just about 12" over the last 3 years, 9" in one year alone. He started out at 5'1" and 89 pounds on the day of his first remicade and his now 6' 1/2" and 140 pounds (yes he's still extremely skinny but so was I his father, all his cousins, his brother, etc). Puberty hit hard and fast and he went through about 3 years worth in a year.
He is a senior this year and doesn't even think about Crohn's. He has a busy life, looking forward to college. I know we would not be at this point if not for remicade so I'm a little biased but I've seen what a difference it's made in his life. There are many who do incredible on 6mp/Imuran my husband included. It's just when you're dealing with growth, puberty, etc there is such a small window of time and it's most important to get them to remission so they can grow and develop.