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Pediatric GI with milder treatment philosophy/approach

Our son is 14 and is on Remicade for 2 years. He is under remission. All tests - colonscopy, MRE, blood reports, are either normal or "closer" to normal, if not heading toward normal.

While we love(yes) the science behind biologics, they loose effectiveness unpredictably. Additionally, our son is at a prime age of growth including pubertal growth and not sure if there is enough research on biologics and teenage growths.


With the above two things in mind, we would like to explore other options for pediatric GI whose approach/philosophy in alternate or milder treatment is well proven.


We are open to travel to any part of the world. Prefer USA or Europe as we live in US.

We have tried to find someone in Boston's Children, Mayo clinic, Cleveland Clinic and Stanford. However, we are having difficulty in searching their philosophy/approaches within these mentioned hospitals before we take appointment. We are open to within these hospitals as well as outside.

Your help is appreciated.
 

Maya142

Moderator
Staff member
As far as I am aware, biologics are the best meds for growth. Is your son not growing?? Generally weight gain happens first, then growth, once you are in remission.

Biologics are actually used often when there is growth delay - they help kids get into remission quickly. There is a small window for growth, so it is important for the child to get into remission and STAY in remission during puberty, as much as possible.

All the research now shows that biologics are most effective. Your child is close to remission, if not in remission. Why would you mess with it? If you start over from scratch with a new treatment, you could delay his growth.

If you are worried about his growth, then I would see an endocrinologist who can do a bone age x-ray and see what stage of puberty he is in. Sometimes kids are behind in terms of bone age, but generally they do catch up if they stay in remission.

We have had some kids here who just were not growing till they were put on Remicade. Once in remission, they shot up.

We go to one of the best pediatric IBD centers in the US (CHOP in Philly) and they use Remicade frequently. On the IBD Education day, one of the things they talked about was diets. While a healthy diet (lots of veggies, less red meat, more chicken and fish) is encouraged, specific diets like the SCD haven't been very successful in their experience. They said often kids lose weight on the SCD and so stop growing because it is so restrictive. The IBD AID is slightly better, but they will only do it in conjunction with frequent monitoring and they say if it hasn't worked in 2 months, then it is time to use medications - often Remicade. Occasionally MTX.

They do encourage supplemental Enteral Nutrition while a child is growing. Usually a semi-elemental formula like Peptamen Jr or Pediasure Peptide. Some kids choose to drink it, while others use NG tube feeds overnight. My daughter did NG tube feeds overnight.

I am going to tag some moms to talk about growth:
Jmrogers4
my little penguin
crohnsinct
Mehita
Tesscorm
pdx
kimmidwife
 

Maya142

Moderator
Staff member
I wanted to add - in the US the top three GI departments are Boston Children's (BCH), Children's Hospital of Philadelphia (CHOP) and Cincinnati Children's.

I know both CHOP and BCH encourage enteral nutrition (formula) in terms of alternative treatments. But usually supplemental EN is used in conjunction with medications.

The only medication that might be milder is MTX. Imuran and 6MP have more risks and most doctors do not prescribe them to teenage boys because of the risk of a rare cancer (hepatosplenic T cell lymphoma). Methotrexate is used instead now. It works well for some kids, but is generally considered less effective than Remicade.

My daughters have been on biologics for 8-9 years now. No side effects at all. The meds they have had the most side effects with are Imuran, Methotrexate (for my younger one - older one is still on it and does well on it) and Prednisone.
 
Maya142,

My apologies. No growth concerns. He is almost as tall as his father and above 50-60 percentile in both weight and height.

Growth + Biologics point/concern was primarily for unknown/skepticism around effect of medication during this key period. (e.g. body getting used/addicted to during the transition to adulthood., ....)

We understand the point of view- if everything is good, why mess with it. However, other thought process is - get second opinion, preparedness for the event when/if biologics loosed effectiveness, have serious conversation with alternate medical viewpoints.

Hope this makes sense. Thank you for your second post/reply and giving some leads.
 

Maya142

Moderator
Staff member
My daughters have used biologics since 13 and 16. The body doesn't get addicted - you can stop biologics any time (like you would if he had an infection for example). But if you stop them, studies do show the symptoms/inflammation tends to come back. Usually pretty quickly.

That is not addiction - it's just the disease. Unless there is something to control it, there will be inflammation and so symptoms.

Pediatric IBD is different from adult IBD - it is more aggressive and tends to spread, unlike adult IBD which stays in one place. So for example, a kid might come with Crohn's in the colon and a few years later, you may find it in the terminal ileum too. Then the duodenum.

The way I justify it to myself is this - there are side effects to biologics. The really scary side effects are very rare. But the scary consequences of this disease are not rare at all - fistulae, abscesses, strictures, obstructions, perforations and even sepsis.

So we choose to live with the risks of biologics. They have been out for about 20 years now and there is a lot of good research to support that they are safe drugs. The cancer risk is very tiny and most studies in RA and JIA (juvenile idiopathic arthritis) have shown that it is from the inflammation and not from the meds. There was a recent study posted in the Parents' section which included kids with IBD that concluded the same thing - that the cancer risk is from inflammation and not from biologics.

Untreated inflammation has also been found to increase the risk of heart attacks in patients with IBD. And of course, colon cancer is a big risk with IBD.

As for transitioning to adulthood, my girls are 21 and 24 now. My 21 year old sees a pediatric GI but has many adult specialists. Both my girls are still on biologics but that is because they chronic lifelong diseases. They have had no adverse effects with biologics and we hope they will stay on them as long as possible - until there is a cure.

In terms of what will happen if Remicade loses efficacy, well, there are other biologics now. Humira, Cimzia and Simponi are other anti-TNFs. Entyvio and Stelara are biologics with different mechanisms.

The goal is to stay on your biologic for as long as possible. If you make antibodies or for whatever reason, it just stops working, there are other options. But only a few, so I would not stop Remicade unless you absolutely have to. There are only so many biologics.

My younger daughter is very complex and has many conditions, including an aggressive kind of arthritis. It became aggressive when we undertreated it, but that is a whole other story. But anyway, at 21, she has nearly run out of options (has been on almost all the biologics) which is terrifying. So stick a med that is working for as long as possible.

A second opinion at one of the hospitals with big pediatric IBD centers is a good idea - Boston Children's or CHOP or Cincinnati Children's. It might help you to hear about biologics and the risks/benefits and their effects on growing kids from the doctors who have done the pediatric studies. They can also discuss other treatments like using diet or enteral nutrition. It will also, hopefully, give you peace of mind.

Good luck!
 
Location
San Diego
We understand the point of view- if everything is good, why mess with it. However, other thought process is - get second opinion, preparedness for the event when/if biologics loosed effectiveness, have serious conversation with alternate medical viewpoints.
It certainly makes sense to be knowledgeable of alternatives in advance if and when there is a loss of response to the current medication. However, I suggest to be very cautious about stopping an effective biologic so long as it is still working and there are no unmanageable side effects. Studies have shown that stopping biologic therapy increases the risk that antibodies directed against the protein drug will form and prevent the drug from working again if and when it is restarted. In other words, if you stop a good biologic there may be no restarting it when things go south and a flare ensues, leaving you with one less tool to manage the disease.
 
It certainly makes sense to be knowledgeable of alternatives in advance if and when there is a loss of response to the current medication. However, I suggest to be very cautious about stopping an effective biologic so long as it is still working and there are no unmanageable side effects. Studies have shown that stopping biologic therapy increases the risk that antibodies directed against the protein drug will form and prevent the drug from working again if and when it is restarted. In other words, if you stop a good biologic there may be no restarting it when things go south and a flare ensues, leaving you with one less tool to manage the disease.
I agree. I have had that happen.
 

my little penguin

Moderator
Staff member
I posted in your other thread
Butyou need to understand there are no extras magical list of safer milder alternative drugs that actually treat Crohns effectively
Across the globe there are known drugs
5-asa are the mildest and least effective
Immunosuppressants-mtx/aza /6-mp
Most don’t recommend 6-mp/aza for teenage boys
Then biologics

That’s it’s

Some have tried LDN
But that has effects in the brain
And no child on here has stayed on it long

There is scd /crohns diet /een
Een is most effective will keep working as long as you don’t eat solids
But psychologically difficult for a growing teen

As I said on the other thread Ds was on humira for over 5 years
GI thought out loud that since he looked so good for scopes maybe he didn’t need it
But never suggested stopping
We found out the hard way how bad things get when you do need a biologics
And then trying to get it to work again
 

my little penguin

Moderator
Staff member
One more treatment used in in refractory kids
Ivig infusions
Hard to get covered and horrid side effects drastically affects qol
(Ds had ivig for 3 months )
A case report of ilaris (il-1) used in refractory veo ibd /Arthritis


That’s it
 

Maya142

Moderator
Staff member
Sometimes for very refractory cases, Tacrolimus or Thalidomide are used. Tacrolimus can be very hard on the kidneys so is usually only used for a few months as a bridge to get the child healthy enough for a major surgery - usually a colectomy.

And Thalidomide...well, as you know, it's not exactly a mild drug. Sometimes it is used if everything else has failed.
 
Sorry I've been away for a few days. I did not get a chance to read through all the replies so my apologies if I'm repeating what others have said.

My son did not grow on the milder drugs for many years despite all labs reading as normal. He started on remicade at 14 1/2 (just over 4 years ago) and was 5'1" and about 89 pounds. He was about 12% on the growth chart despite being in the 75-80% prior to Crohns.

He gained weight and grew a few inches within the year after starting remicade. His self confidence improved as well, he was no longer being mistaken for a child. Puberty hit hard and fast and then the growth really started he grew 9" over the span of one years time. He is now about 6'1" - 6'2" (depending on who's measuring) and is about 150 pounds at 18 1/2. He is just finishing up his freshman year and we are holding tight to remicade as long as it will work a few years ago I would have never thought I would be saying that - I was anti biologics for my kid. I just didn't think he was bad enough to need them. Thanks to all the lovely people here on the forum who kindly opened my eyes that if the disease was keeping him from growing then it was probably time to admit that what we were doing wasn't enough.
I wish you all the best in whatever you choose and hope it works wonders. It's definitely a marathon you're running with this disease.
 
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