VEO CROHN'S DISEASE

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J100

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Sep 25, 2022
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My son was around 18 months old when he was diagnosed with Crohn's disease. Since then we have been to the emergency and a couple of weeks multiple times. We started him on sulfasalazine and a couple of weeks into it, he developed high fever. We rushed him to emergency and 3 days into it, he was diagnosed with Kawasaki disease. The fever was brought down after predinosolone. A couple of months later he again developed high fever and we had to bring him again to the emergency. The doctor subsequently recommended imuran which is azathioprine. 4 weeks into it, he developed high fever and we had to rush him to emergency. The doctors are trying their best but we don't know when we will get a medication which works for my son. He has turned two and the journey ahead seems very difficult.
 
Sounds awful. I would be worried about azathioprine in a young boy due to cancer risk. Have the doctors discussed trying remicade, humira, or stelara? Are they quite sure it's Crohn's and not something else, possibly some infection? Antibiotics can be helpful sometimes for Crohn's, too.

One of the most effective treatments to start off with is EEN, which is particularly easy to do in a very young child. EEN involves consuming an all-formula diet, and it tends to bring inflammation down quickly.
 
Hi Pangolin

Thanks for your reply. I am based in Sydney Australia. The diagnosis was based on a biopsy done post colonoscopy after sustained period of bleeding in my son's poop. The paediatric gastroenterologist didn't want to make a diagnosis without a colonoscopy. Only when the results came from the biopsy, he provided a diagnosis. It has been a very difficult period for my son and myself and our family. We started on a CDED diet first before sulfasalazine but that one didn't help. Right now the doctors first want to identify why he developed high fever.
 
Hugs 🤗
Inflammation can cause fevers
Veo ibd is difficult to treat since adult meds and older pediatric meds don’t work as well
Does Australia have a veo ibd clinic ?
Can they reach out to the childrens hospital of Philadelphia?
They have a specific clinic for veo ibd
They run genetic sequencing, immunology and other specialists work together
Might be worth asking if they could coordinate a second opinion online for your child

Een - exclusive enteral nutrition means formula only such as pediasure, kids boost etc and no solid food
This can stop inflammation similar to steriods but without side effects

The problem given your child’s age is young toddlers are learning to eat solids at that point
So definitely worth talking your doc about

Going to tag some other moms /dads

We have a parents forum as well

Not sure how young humira is given (I think age 4 )but might be younger

I know they use methotrexate in juvenile arthritis in little toddlers so that might be an option

Veo ibd can be immunodeficiency which mimics crohns
Hence the genetic tests

@Pilgrim
@GirlwiththeCurl
@pdx
@Maya142
 
I don't have much to add, except that I agree with mlp that veo-ibd is different from usual ibd, and your son may need to be seen, if possible, by a doctor who specializes in it.

I'm sorry your son is going through this. It's awfully hard on the family, too. I hope you all can sort this out quickly.
 
Thanks all for your messages. The Children’s Hospital in Sydney has got an IBD clinic. There is a team of doctors who have been involved apart from his regular paediatric gastroenterologist which includes a paediatric immunologist who has ordered exhome sequencing which will take time. We have to wait till January 2023 and the odds of something showing up in sequencing are low just 20% but it is worth a shot.

My little penguin or anyone else- please let me know the latest treatment options being done at CHOP or any other hospital for VEO CROHN'S disease. If there is something latest, the team over here can always reach out to the doctors at CHOP.
 
Honestly, in the US, they use biologics and often will use high doses to get kids into remission quickly. Remicade or Infliximab is usually the first choice. It’s an infusion, given every 4-8 weeks (after the loading doses), depending on what the child needs. I have heard of it being given even more frequently in really young kids (kids metabolize drugs more quickly than adults and so tend to need higher doses and/or more frequent infusions).

Other options, like mentioned above, are other biologics like Humira (adalimumab) or Stelara (ustekinumab) or Entyvio (vedolizumab). I think of all of them, Remicade and Humira are used most often with really young kids, simply because they are approved for pediatric patients and there is a lot more data showing that they’re safe for young kids. I know for juvenile idiopathic arthritis, Humira is routinely used in 2 year olds (and younger). I am not sure what the minimum age for Remicade is, but I know they will definitely use it on 3-4 year olds at CHOP (we also used to go there when my daughter was younger).

Methotrexate is another option - it’s an immunosuppressant like Azathioprine (but safer). However, it does come with more side effects than biologics and is less effective. It is cheaper though so it’s sometimes a first line treatment. It can also be added to biologics like Remicade or Humira.

Another option is exclusive enteral nutrition or EEN to induce remission. It’s formula only (medical formula like peptamen jr or neocate) for 6-8 weeks to induce remission. It’s usually started with a maintenance medication like Remicade or Humira because those can take weeks to work (or more), so EEN gets the inflammation under control quickly.
 
Hi Maya142 -thanks for your reply. Yesterday
the doctor changed my son's medication to methotrexate. When I had a chat with the doctor yesterday, he advised that it is best to go with methotrexate instead of going to biologics. I think the protocol for the doctors based in this hospital is to go with immuno suppressants first and if that doesn'tworkthen go to biologics. Fingers crossed. Let us see how it goes. Thanks all for your messages. If anyone comes across any latest treatment options apart from immuno suppressant and biologics, for VEO CROHN'S disease, please share it.
 
Cost is a big factor
Immunosuppressants are much cheaper than biologics
In the US at least Gi have to fight insurance to pay for biologics and most require a trial of immunosuppressants first 😞
Add in your doc might be trying to buy time until your child reaches age 2
Under 2 jabs different rules for meds that can be used
Same as under 12
And under 18

I highly recommend your docs talk to the veo ibd clinic in chop they can recommend testing meds
My kiddo was older when seen (around 16) so normal meds if immunosuppressants/biologics we’re used
I do know they do things differently but it didn’t apply to my kiddo including the DIRT team

https://www.chop.edu/centers-programs/immune-dysregulation-program
Ran a ton of different tests by them
Definitely reach out
 
Cost is a big factor
Immunosuppressants are much cheaper than biologics
In the US at least Gi have to fight insurance to pay for biologics and most require a trial of immunosuppressants first
Click to expand...
But it depends on if the doctor can justify it. I know we have one member with a son with VEO IBD and he was quite sick and was immediately put on Infliximab/Remicade. I know a parent of another child who was also very young (3 I think) and they went straight to Remicade too. If he is having significant bleeding, high fevers and is needing to go to the emergency room a lot, then I'm kind of surprised they won't use a biologic.

And in juvenile idiopathic arthritis, Humira is actually approved for kids 2 and over, though I have seen plenty of younger kids (1 year, 18 months etc) be put on it off-label. My own kids were not put on immunosuppressants like MTX (which is standard in JIA) and went straight to biologics - their doctor was able to justify it based on which joints were involved and the severity of their arthritis. They both went straight to Humira.

However, all that said, I don't know the system in Australia and I think @my little penguin is right in saying it probably has to do with cost. Unfortunately biologics are very expensive and MTX and Azathioprine are very cheap, and so tend to be used first, even though they are less effective. Since he's 2 now, I would definitely push for biologics if he does not improve on MTX.

I also agree that you should have your doctors reach out to CHOP - they do genetic testing for variants that can sometimes be found in kids with VEO IBD and could also advise on medications.
 
Thanks Maya142 and my little penguin for your responses. This afternoon the fever reached 38 and we rushed him to the emergency. At emergency, the fever reached 40.2. I am sitting in the emergency again as I type this message.
@MLP - Is the immune disregulation program part of exome genetic sequencing. If it is, it has already been ordered but it takes time. I will ask the immunologist over here to check it out.
 
Immune dysregulation does more than just whole exome sequencing- that was one part but then they did a ton of other bloodwork and tests
Looking at different parts of the immune system
At least for my child
They hand pick the head specialist from various departments to be involved depending on your child history
I know of other kiddos who did the program /clinic
Different specialists involved then my kiddo and different bloodwork
But they actually found something out of the blue that explained a lot for that kiddo
So well worth it imo
 
My daughter was diagnosed VEO at age 3, and went through different options: EEN, Azathioprine, Sulfasalazine, dietary before starting Humira at age 4. Humira was successful for many years.

If I remember correctly she had to work up the med ladder in order to access biologics. In Canada 12 weeks on methotrexate is the amount of time needed to fail (unless there is an allergic reaction or drastic disease spiral).

If your child is admitted to hospital they may be able to work it out sooner.

Biologics made a world of difference here.

Keep us posted when you can.

Wanted to add that we had basic genetic testing but no significant information came out of that for our daughter.
 
Thanks MLP, Pilgrim and Pangolin for your messages.
MLP-I had a chat with the paediatric gastroenterologist today and he advised that the panel for immune disregulation is probably ordered. The paediatric immunologist will be back on Tuesday and will check with him what has been ordered. I will have a chat with him.

Pilgrim- thanks for your message. Right now, no medicine seems to be working. I had a chat with the paediatric gastroenterologist and he advised that he will have a chat on Tuesday with my son's regular paediatric gastroenterologist who will be back on Tuesday. Let us wait for him. We are at such a low ebb right now and there are so many unanswered questions.

Pangolin- I checked the website. I will send a message to Dr. Thomas Barody. However he looks after adults and not kids.
 
You definitely need to see a pediatric GI with a child who is so young. Hopefully they will put him on biologics soon if other drugs are not working. You could also try EEN with Methotrexate to try and get the inflammation under control while giving the MTX time to work. Or steroids. Keep us updated - we'll be thinking about him!
 
Thanks Maya142, MLP and Pangolin for your messages. Last night, my son tested positive for enterovirus. At least we have a reason for his high fever. Tomorrow the immunologist is back so we will find out tomorrow how long it will take to get some answers if immune disregulation is there. The gut inflammation is under control for now.

I checked with his paediatric gastroenterologist yesterday about chronic granulamotous disease and he advised that the NBT test was negative. Therefore the chances of that disease are low.

One additional thing which I wanted to check was meningococal vaccination. My son is vaccinated for only one strain. I think I should pause the medication and get him vaccinated for meningitis. Let me know your thoughts.
 
Hmmm...if it's not a live vaccine (and if I'm remembering correctly, it's not), you should not have to pause treatment. But check with your GI, obviously.
I'm glad it's a virus, though I'm sorry he's so miserable!!! Is he in the hospital or at home?
 
Thanks Maya142 for your message. He is still at the hospital. The doctors wanted to observe him for one more day. Hopefully they will discharge him this afternoon. With the frequent hospitalisations, my son doesn't let any nurse or doctor come near him. But no choice under the circumstances.
 
Yesterday my son was discharged from the hospital. I also had a detailed chat with the immunologist. He stated that the exome sequencing is in progress. But he was also clear that there are only 30% chance of finding something. Fingers crossed.
 
Hi All
I came across an article in which MAP bacterium supposedly causes Crohn's disease in children. If possible, please review and let me know your thoughts.
 
Map is controversial in all population
Some are strong believers
Others not so much

Very weak scientific proof imo from what I have seen
Infants with crohns (those dx before age 2 is statistically beyond rare
Please consult with chop
They have a database at nih of all kids with veo ibd to compare genetics
They see hundreds of kids with veo ibd each year vs the 1 or 2 at individual hospital around the world
They also have what is known to mimic crohns in kids they young
Nothing to lose
Please email them
 
It is controversial. I don't think we'll know until further study has been done. As far as I I would also urge you to consult a children's hospital that has seen LOTS of very young children with IBD. VEO IBD behaves differently from later onset IBD - even different from kids that are still relatively young, like 9 or 10. It can be very aggressive and sometimes doesn't respond to standard therapies or higher doses are needed.

Here are some patient stories from CHOP - I know when my daughter was diagnosed, reading positive stories gave me a lot of hope: https://www.chop.edu/centers-progra...bowel-disease-veo-ibd-program/patient-stories
 
Thanks MLP and Maya142 for your messages. I believe that MAP is very likely to be the cause for my son's Crohn's disease. But having said that, it is not my personal belief which matters. It should be based upon science. Has there ever been a study which either validates it or invalidates this hypothesis about VEO CROHN'S disease? It will be great if a study has been done. I will try reaching out to CHOP.
 
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Dr. Borody is an advocate of the MAP theory, and he's published some papers describing some very good results he's had with Crohn's patients, including in kids.

That said, personally I think MAP is only a minor part of the whole picture of Crohn's causation, and I would recommend keeping an open mind on all of the various possibilities.
 
The MAP theory has a faction of fierce True Believers. I'm not a True Believer but I don't entirely dismiss it either. Based on what I see in the research there is very likely a bacterial trigger involved in the onset of a majority of Crohn's cases. And MAP is likely one of several microorganisms that can provide this trigger.

One of the big holes in the MAP theory is that there are plenty of Crohn's cases in which no trace of MAP infection can be found - to which the pro-MAP folks reply that that it must be there but the detection methods simply aren't sensitive enough to find it. In which case we have left medical science and entered the realm of witch doctor medicine - battling undetectable evil spirits that our beliefs tell us must be there.

In addition to MAP, Klebsiella pneumonia. adherent-invasive E. coli (AIEC), Clostridium difficile, Listeria monocytogenes, Campylobacter concisus; as well as viruses, such as, cytomegalovirus, Epstein-Barr Virus, and measles virus, plus various fungi, “bacterial films,” and a generally abnormal gut microbiome have all been implicated in various studies as triggering Crohn’s. I’m sure there are also many others that I’m forgetting. My personal opinion is that probably all of them sometimes play a role in triggering the disease is some patients, but none of them is THE big cause of Crohn’s disease.

The causes of Crohn’s are more complex than a simple MAP infection. Clearly genetics and diet/environment also play important roles. IMO, Crohn’s gets started when the right combination of genetic susceptibilities and diet and/or environmental toxin exposure meets up with a triggering event – often a bacterial infection that might or might not be MAP but could also be a course of antibiotics given for something else that disrupts the natural gut bacteria in a negative way. All these combine to induce an overly aggressive and persistent immune response that damages the nearby gut tissue.

The bottom line is there is no one way to come down with Crohn’s, and there is no one version of Crohn’s disease. Crohn’s disease is a collection of similar and overlapping conditions that share several important features in common. These conditions can be started in multiple ways which is why Crohn’s requires multiple ways to treat it. There is no One Big Answer.
 
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Over the years in no order
Cause and/ or prevention of crohns

Using antibiotics by the mother or not using them was a cause depending on whose paper
The child taking or not taking antibiotics by a certain age
Breastfeeding or not breastfeeding
Having infections before a certain age
Living near a farm
Exposure to animals or dogs to protect from crohns
Most of the things that were supposed to reduce risk of crohns we did with Ds
Didn’t work
Even tested a swollen removed lymph node for various MAP and other infectious diseases
Nothing present just granulomas from auto immune or auto inflammatory disease

My point there are a ton of theories
But none have been proven yet


Crohns is still a large umbrella disease similar to arthritis
The difference is in arthritis
They have broken it down into many different subsets and some of the treatment has more success depending on subset
Cause is still unknown as well

Crohns they lump everyone together
Muddies the waters imo
 
Thanks Scipio, MLP and Pangolin for your messages. Reading all the messages, it seems that Crohn's disease is perhaps triggered due to different factors in different people.

Both my wife and myself are of Indian heritage with no history of Crohn's. One thing which bugs me is that the incidence VEO of Crohn's disease in India is almost unheard of. And the factors- whether it is MAP or kp or norovirus or something and or a combination of genes should be there in India too. But the incidence of VEO CROHN'S disease in people of Indian origin in Australia, Canada is on the rise. What are the factors which trigger it in Australia or Canada or US but not trigger it in India. The genes remain the same but the environment is different. But what is it is perhaps a million dollar question.
 
In terms of MAP research what I have seen has been in adults and broadly says the anti-map antibiotics work for some Crohn’s sufferers but not all. Selby et al did a big paper a few years ago in Australia which was quite pessimistic but has been heavily critiqued since. Redhill biopharma did some more recent research and got a % if people into remission, about 30% if I remember correctly.
An English professor called John Herman-Taylor was a passionate MAP theorist and developed a vaccine that is supposed to help fight MAP. He sadly passed away a year or so ago but his daughter has continued the work and the vaccine is currently being trialled in London with initial results due April 2023.
In terms of geography I think the anti-map view is that intensive cattle farming= spread of Johnes disease amongst cattle = map bugs end up in streams and rivers from manure = higher levels of MAP in the drinking / showering water of areas that are downstream of these farms = higher rates of Crohn’s in those areas.
The vaccine is not being trialled on children yet still quite early days.
There is a Crohn’s map vaccine group on Facebook and generally updates from that get posted on this forum to keep people informed.
 
J100 said:
Thanks Scipio, MLP and Pangolin for your messages. Reading all the messages, it seems that Crohn's disease is perhaps triggered due to different factors in different people.

Both my wife and myself are of Indian heritage with no history of Crohn's. One thing which bugs me is that the incidence VEO of Crohn's disease in India is almost unheard of. And the factors- whether it is MAP or kp or norovirus or something and or a combination of genes should be there in India too. But the incidence of VEO CROHN'S disease in people of Indian origin in Australia, Canada is on the rise. What are the factors which trigger it in Australia or Canada or US but not trigger it in India. The genes remain the same but the environment is different. But what is it is perhaps a million dollar question.
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My daughters are half- Indian and actually grew up in India. They had juvenile idiopathic arthritis symptoms but the younger one had no very obvious Crohn's symptoms (no bleeding for example). The subtype of JIA they have (ERA) is actually the most common subtype in India and least in the US. They both have the HLA B27 gene, which is associated with the whole spondyloarthritis complex, which includes psoriasis, psoriatic arthritis, IBD, enteropathic arthritis (another name for the type of arthritis associated with IBD) and juvenile spondyloarthritis (now called ERA).

About 70% of kids with this type of arthritis have subclinical inflammation in the gut. In a much smaller percentage it turns into overt Crohn's. It is interesting that E.coli was mentioned in addition to MAP by @Scipio because my younger daughter got E.coli 3 times as a child (and once two years ago). She also had CMV. She often had diarrhea as a kid which we put down to the food in India. My older daughter had none of these, just lots of upper respiratory stuff. Both girls had the BCG vaccine - there is some research that that is being studied for MAP. It was common give it in India then.

While both girls had symptoms of JIA while in India (which were dismissed by multiple doctors), it didn't get bad enough to diagnose until we moved to the US. Same with the Crohn's my younger daughter got - she essentially put herself on a low residue, very bland diet at 4, but no dx till long after we moved. We just thought she was unusually picky when she was little, though she continued being picky and I do remember her stomach hurting with certain foods when she was 9-10. So I do think environment matters.

We were also told recently that IBD is rising in India, but in adults, not kids.
 
Thanks Delta_hippo and Maya142 for your messages.

I believe that the role of MAP can't be understated. Therefore if that vaccine on which John Hermon Taylor was working, is effective in adults to some extent and it will be a few years before trials are conducted on young children. In India, most of the children get vaccinated with BCG Tuberculosis vaccine. Maybe that explains why the incidence of VEO Crohn's disease in India is low.

Based upon the above messages, below are some of the hypothesis on the cause of Crohn's based upon the discussion so far.

1. MAP bacterium.
2. Use of antibiotics at an early age.
3. Not breastfeeding
4. Norovirus
5. Infections due to E. Coli, " Klebsiella pneumonia. adherent-invasive E. coli (AIEC), Clostridium difficile, Listeria monocytogenes, Campylobacter concisus; as well as viruses, such as, cytomegalovirus, Epstein-Barr Virus, and measles virus, plus various fungi, “bacterial films" - Quoting Scipio
6. Genetic conditions
7. Environment or epigenetics where environment causes changes in genetic behaviour
8. Altered Gut microbiome due to above or other reasons
9. Other unexplained causes

Looks like multiple causes. And the end result is Crohn's disease. The role of altered gut microbiome is also quite important. Though it begs the question - is the altered gut microbiome a result of Crohn's or the altered gut microbiome the cause?
 
J100 said:
Looks like multiple causes. And the end result is Crohn's disease. The role of altered gut microbiome is also quite important. Though it begs the question - is the altered gut microbiome a result of Crohn's or the altered gut microbiome the cause?
Click to expand...

Exactly! When it comes to Crohn's, is the commonly observed derangement of the microbiome a cause or an effect? Or both? No one knows.

What we do know is that the FMT treatments designed to restore a healthy microbiome have worked pretty well for treating C. diff. infections, worked moderately well in treating UC, and worked poorly in treating Crohn's.
 
Hi Scipio - Thanks for your response. I came across some research which states the same thing that FMT in children with Crohn's wasn't curative. I have copied the URL below.

https://pubmed.ncbi.nlm.nih.gov/29361092/
Has anyone ever come across any latest research in genetics - gene editing or epigenetics on Crohn's and if they can provide lasting treatment or cure?
 
There is no cure for crohns
There is no genetic editing

Infantile crohns is extremely rare
Treatment even rarer for infantile crohns
Immunosuppressants
Biologics
And formula only diets (EEN)
That’s it

If it’s immunodeficiency then there is ivig

If it’s something else that mimics crohns then maybe that

Auto inflammatory diseases are also rare tend to happen in infants more and mimic crohns
Those have different biologics
Some have genetic markers
Some don’t


You need a large pediatric center that sees 100’s of patients with infantile crohns

Those are hard to find
Only a few in the us
Not sure about Australia
 
As mlp says, there currently is no genetic editing in humans. It's nearly all done in test tubes now, not living humans. There have been a few promising experiments treating some conditions (not Crohn's) reported in the press, but we are still decades away from genetic editing being available for routine use in human medicine..

And even if it were currently available, which genes would we edit to cure Crohn's? There are multiple genes that are statistically associated with increased susceptibility to Crohn's, but it's not like hemophilia or cystic fibrosis where if you can find and correct the one mutant gene you can cure the disease. For Crohn's there is no one bad gene.

For VEO the thinking is that genetics perhaps plays a bigger role than is does in more routine Crohn's cases, because the infants haven't had very much time to be exposed to all the infections, foods, and environmental toxins that are implicated in triggering regular Crohn's. But nevertheless, the genetic picture is still very muddled.

One IBD specialist I am aware of in Australia is Prof. Michael Kamm in Melbourne. He is a prominent Crohn's doctor and researcher. But I know that Melbourne and Sydney are not all that close. And I am not aware of any special focus on VEO Crohn's by Prof. Kamm..

https://www.centralmelbournegastro.com.au/professor-michael-a-kamm
 
Thanks MLP and Scipio for your messages. I was hoping against hope when I asked for feedback on genetic editing. As a parent, sometimes it gets overwhelming knowing that there is no cure.


@MLP - The Children’s Hospital in Sydney does have a dedicated IBD clinic and a lot of paediatric gastroenterologist doctors though not sure about the exact number of patients. But they do have frequent webinars for parents and I have seen good number of parents join the webinar.
 
In very rare cases, there have been stem cell transplants. Here is one such story from the page I linked earlier. The child was a gene XIAP and had symptoms of VEO IBD as an infant: https://www.chop.edu/stories/inflammatory-bowel-disease-brandon-s-story

This is another story of an infant who needed very specialized care: https://www.chop.edu/stories/rare-genetic-disease-nlrc-4-olivia-s-story

They're worth reading because they really explain why it's so important to see doctors who have experience with very young children with IBD.
 
There is a big difference between a university based childrens hospital that treats lots of pediatric ibd /crohns patients
And a group of specialists who only are treating veo ibd patients
Especially infants dx with crohns
Less than 2% of all pediatric crohns patients are dx before age 10
The % below age 5 is even smaller
And infants at dx is ridiculously small % of that 2%

My point is even if your hospital has pediatric Gi
Who see lots of pediatric crohns patients

They would not see more than a handful of infants or even kids under 10 with crohns

Our previous Gi was a pediatric Gi who saw lots of pediatric crohns patients at a major university childrens hospital in the US
But even he strongly suggested Ds be at least seen for a second opinion chop veo ibd clinic
Because while the treatment may remain the same
It’s always good to see the experts in the field who have seen more than a few veo cases
He wanted to make sure we were doing everything we could for ds since he was dx at 7 but sick since he was 14 days old.
 
Thanks Maya142 and MLP for your responses. Looks like CHOP has got a good team of specialists focused on VEO CROHN'S disease or IBD.

I am getting a second opinion with another paediatric gastroenterologist just in case the current team has missed something.
 
J100 said:
Hi All,

I came across a link in which Stanford University is planning to do research on children with IBD.

https://med.stanford.edu/relmanlab/...-microbiome/contact-the-veo-ibd-research-team
It is asking for a valid US phone during registration and therefore I can't register. If someone would like to register their child who has got VEO-IBD, it will be good. It may help and improve our understanding of it.
Click to expand...

You can also directly reach out to Dr. Rosen who is the director of Stanford IBD center about participation. He was our doc. He has Crohn's as well. Nice guy to talk to.

https://www.stanfordchildrens.org/en/doctor/michael-j-rosen
 
Hi asadmom thanks for your reply. I actually sent an email to Dr Relman but I didn't get a response. I will reach out to Dr. Michael Rosen.
 
J100 said:
Hi asadmom - I got a prompt reply from Dr Rosen. He checked with Dr. Relman and advised that the study is no longer active and it had concluded a while ago. Somehow the page was still active in the public domain. He did send the results of the study which I have pasted the URL.

https://academic.oup.com/ibdjournal/article/25/12/1927/5528593
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Rosen is great. You can ask him for guidance if you feel you are stuck somehow.

How is your son doing? I am sorry this journey has been rough with many zig zags, u turns and junctions that lead to nowhere. You are doing the right thing, however, by reading a ton, asking lots of questions and challenging the circumstances because you can't lead if you are not informed. You are shaping the future "therapeutic" space for your son and your son is lucky to have you care for him! He is still young and there are MANY smart people working in this space on improving the quality of lives for IBD patients, especially the little ones. Not sure if you are on twitter but a ton of IBD specialists hold conversations there (the ibd twitterverse is very busy for good reasons) and it's a painless way to stay on top of things.

Did you hear back from https://centrefordigestivediseases.com/? I am interested in their treatment protocol as well.
 
asadmom said:
Rosen is great. You can ask him for guidance if you feel you are stuck somehow.

How is your son doing? I am sorry this journey has been rough with many zig zags, u turns and junctions that lead to nowhere. You are doing the right thing, however, by reading a ton, asking lots of questions and challenging the circumstances because you can't lead if you are not informed. You are shaping the future "therapeutic" space for your son and your son is lucky to have you care for him! He is still young and there are MANY smart people working in this space on improving the quality of lives for IBD patients, especially the little ones. Not sure if you are on twitter but a ton of IBD specialists hold conversations there (the ibd twitterverse is very busy for good reasons) and it's a painless way to stay on top of things.

Did you hear back from https://centrefordigestivediseases.com/? I am interested in their treatment protocol as well.
Click to expand...
Hi asadmom - Thanks for your response and concern for my son. He is doing all right and seems to be in remission but the situation could change in a matter of hours. He is currently on methotrexate which can have a lot of possible adverse side effects. It can suppress the bone marrow and also cause lung scarring. I am just hoping that someday soon a treatment comes along that will not have adverse impacts. Thanks for your support and also everyone on this forum who has responded to my messages. It is very helpful. I have never tried twitter. Somehow I feel it can be too much information and this focused group is great for now. I did contact https://centrefordigestivediseases.com/ and they don't have paediatric gastroentrologists and therefore were unable to assist me.
 
Those side effects of MTX are VERY rare. I do understand how scary it is - my daughters were roughly 13 and 15 when they started it and I still stayed up all night worrying about it (even with my younger daughter, though my older one was already on MTX at the time and was doing well!). I spent ages agonizing about the medication decisions. But what we learned the very hard way is that these diseases (my younger daughter has both Juvenile Idiopathic Arthritis and Crohn's as well as many other conditions) are much scarier than the treatments. My younger daughter ended up with very severe arthritis, joint replacements at 22 and joint damage in numerous joints because we under-treated her arthritis. We did not make that mistake when she was diagnosed with Crohn's and thankfully her Crohn's is mild to moderate.

My older daughter has now been on MTX for 14 years! I'm happy to report that she has no side effects besides mild nausea or fatigue the day after the injection. If the nausea really bothers her, she takes Zofran. My younger one initially struggled with side effects (nausea, vomiting, dizziness) as a teen but as a young adult, she has no side effects at all (no clue why). They are both on biologics as well as MTX.
 
Hi Maya142 - thanks for your response.

I agree that it is best to treat as prescribed by the paediatric gastroentrologist. My son was first started with sulfasalazine and then he had kawasaki in June which only could be brought under control after steriods. And when the steroids were being weaned off and there was a big flare up of Crohns in August. And at the time, there was no maintenance medication for Crohns. Subsequently, he has been on maintenance medication first sulfasalazine which gave him a rash and then imuran and now methotrexate. My son's doctor suspected that sulfasalazine may have triggered kawasaki the first time. Though one can never be sure what triggers kawasaki. And imuran caused a problem with his pancreas.

Thank you for sharing your daughters' journey. It is a very useful insight and it is good to know that mtx has worked for them along with biologics. Looks like both your daughters have had an arduous journey and I wish them well and hope they stay in remission.
 
@J100
Same her my kiddo has juvenile arthritis and crohns .
He has been on methotrexate for almost 9 years
They watch all his bloodwork very closely
But other than mild nausea the day afterwards
He has been fine with methotrexate.
He takes that combine with Stelara
He was 10 when he started mtx
And now is 18

The good news is once you find a drug that works for your child and you see normal again
It’s miraculous
It only gets scary when they change a med (at first )

So glad he is doing better
 
Hi M
my little penguin said:
@J100
Same her my kiddo has juvenile arthritis and crohns .
He has been on methotrexate for almost 9 years
They watch all his bloodwork very closely
But other than mild nausea the day afterwards
He has been fine with methotrexate.
He takes that combine with Stelara
He was 10 when he started mtx
And now is 18

The good news is once you find a drug that works for your child and you see normal again
It’s miraculous
It only gets scary when they change a med (at first )

So glad he is doing better
Click to expand...

Hi MLP thanks for your response. It is good to know that methotrexate has worked for your son.
 
Maya142 said:
Those side effects of MTX are VERY rare. I do understand how scary it is - my daughters were roughly 13 and 15 when they started it and I still stayed up all night worrying about it (even with my younger daughter, though my older one was already on MTX at the time and was doing well!). I spent ages agonizing about the medication decisions. But what we learned the very hard way is that these diseases (my younger daughter has both Juvenile Idiopathic Arthritis and Crohn's as well as many other conditions) are much scarier than the treatments. My younger daughter ended up with very severe arthritis, joint replacements at 22 and joint damage in numerous joints because we under-treated her arthritis. We did not make that mistake when she was diagnosed with Crohn's and thankfully her Crohn's is mild to moderate.

My older daughter has now been on MTX for 14 years! I'm happy to report that she has no side effects besides mild nausea or fatigue the day after the injection. If the nausea really bothers her, she takes Zofran. My younger one initially struggled with side effects (nausea, vomiting, dizziness) as a teen but as a young adult, she has no side effects at all (no clue why). They are both on biologics as well as MTX.
Click to expand...

I have a very sneaky feeling that my son is developing something along the lines of JIA? He has been complaining about his right knee pain, off and on, for a while now (over a year). In addition to the rash/peeling on his feet/hands, his chest and the area around his armpit had some rash yesterday. In addition, he has two pitted nails and for sure these are some type of autoimmune symptoms just don't know if Crohn's caused the nail disease or something else.

Are these all related? He's been on Humira for almost a year, should Humira have taken care of these problems?
 
See a dermatologist and rheumatologist
They can help determine what is and is not related to crohns
If he has arthritis it’s known as juvenile arthritis associated with inflammatory bowel disease
Since he already has crohns

You can have arthritis while on humira or any biologic
Only a doc can determine if he has arthritis
 
I am sick of everything. All of this. It's a neverending assault, a 24x7 job with these problems. We live just to deal with health problems.
 
@asadmom
It’s not a sprint it’s a marathon
Take a break

Stop researching /posting /staying here until things calm more

Take time to breath -relax -

It’s been 11 years here
We all want to “cure crohns” or think our child will be the different case but … never happens

Just take a step back

Let the doc (stick to one for each speciality only ) handle your child’s care Gi /Rheumo etc
They can decide what is best

And you focus on the the rest of mom/dad stuff
Your child needs

If it’s still too much find a good therapist for you to talk to
Chronic illness is hard especially on the care giver
 
Honestly, I would see a pediatric rheumatologist. Pitted nails could be a sign of psoriatic arthritis. BUT and this is a big BUT - most kids who are treated early and aggressively with JIA do well. My daughter was not treated early enough or aggressively enough and is also really an outlier - she simply has severe disease. That is partly genetic and partly treatment mistakes.

I would DEFINITELY see a pediatric rheumatologist before you switch biologics. While Stelara is approved for pediatric arthritis, it does not work as well for the joints as Humira and Remicade and other anti-TNFs and there really weren't studies done on kids with PsA - it was approved based on the fact that it's approved for adults (but if you ask any adult rheumatologist, they will tell you Stelara does not work well for the joints - probably because it is given at a MUCH lower dose for arthritis vs. Crohn's. I have heard of some kids responding well on the Crohn's dose though, while others got drastically worse). We really thought it would be a good option for my younger daughter given it works for both arthritis and Crohn's but have been told absolutely not, time and time again by doctors at HSS, Mount Sinai, Penn, NIH and another research study she's in.

Normally, if he does have psoriasis and psoriatic arthritis, they would add MTX and escalate his Humira dose to weekly before abandoning it. That would depend on the psoriasis though - if he has significant psoriasis and minor arthritis, then they may prefer Stelara. In my daughter's case, it's the other way around - very major arthritis and minor nail psoriasis and on her hand (not confirmed because we weren't able to biopsy the rash), so no Stelara. She tried another IL-23 inhibitor and got much, much worse so we abandoned it in 6 weeks.

How significant is his knee pain? Is his joint red or swollen or stiff? If not, it could be any number of issues and not JIA. Does he play sports?

It sounds more like he has skin issues and should be seeing a dermatologist. But just to be sure, if he does have signs of JIA (swelling, pain, stiffness particularly in the morning, a warm joint) then I'd see a rheumatologist.
 
Maya142 said:
Honestly, I would see a pediatric rheumatologist. Pitted nails could be a sign of psoriatic arthritis. BUT and this is a big BUT - most kids who are treated early and aggressively with JIA do well. My daughter was not treated early enough or aggressively enough and is also really an outlier - she simply has severe disease. That is partly genetic and partly treatment mistakes.

I would DEFINITELY see a pediatric rheumatologist before you switch biologics. While Stelara is approved for pediatric arthritis, it does not work as well for the joints as Humira and Remicade and other anti-TNFs and there really weren't studies done on kids with PsA - it was approved based on the fact that it's approved for adults (but if you ask any adult rheumatologist, they will tell you Stelara does not work well for the joints - probably because it is given at a MUCH lower dose for arthritis vs. Crohn's. I have heard of some kids responding well on the Crohn's dose though, while others got drastically worse). We really thought it would be a good option for my younger daughter given it works for both arthritis and Crohn's but have been told absolutely not, time and time again by doctors at HSS, Mount Sinai, Penn, NIH and another research study she's in.

Normally, if he does have psoriasis and psoriatic arthritis, they would add MTX and escalate his Humira dose to weekly before abandoning it. That would depend on the psoriasis though - if he has significant psoriasis and minor arthritis, then they may prefer Stelara. In my daughter's case, it's the other way around - very major arthritis and minor nail psoriasis and on her hand (not confirmed because we weren't able to biopsy the rash), so no Stelara. She tried another IL-23 inhibitor and got much, much worse so we abandoned it in 6 weeks.

How significant is his knee pain? Is his joint red or swollen or stiff? If not, it could be any number of issues and not JIA. Does he play sports?

It sounds more like he has skin issues and should be seeing a dermatologist. But just to be sure, if he does have signs of JIA (swelling, pain, stiffness particularly in the morning, a warm joint) then I'd see a rheumatologist.
Click to expand...

Thanks! Wrote our doctor about it. Hopefully we can see someone x 2 soon.

No redness or swelling at this time but he could not walk, have to limp, when the pain is there. Then it goes away in a few hours. He swims now but didn't for a number of years. When he first bought this up a bit over a year ago, it was only the school PE he was doing.

So, can psoriasis or arthritis be diagnosed formally? Meaning if we were to do a set of tests we can be sure of a diagnosis or a lack of?
 
Yes, they would examine him, check his range of motion and feel for inflammation. Usually they can tell if there is inflammation based on the exam, but if there is any doubt they would do an ultrasound or MRI to see if there is inflammation. If there isn’t, you’re in the clear.
Honestly, nothing you’re saying screams JIA to me. I would expect some swelling or stiffness. Just knee pain can come from any number of knee conditions teens can have while growing. Pitting on two nails isn’t enough for a psoriasis diagnosis. His rash would have to be examined for psoriasis - my husband was diagnosed just based on examination with psoriasis on his scalp and nails and face. He didn’t have a biopsy or anything because his was a very classic presentation of psoriasis.
I can tag @crohnsinct - she can tell you more about psoriasis being diagnosed.
Does his rash on his chest and armpit go away in a day? Because that doesn’t sound like psoriasis to me.
 
Maya142 said:
Yes, they would examine him, check his range of motion and feel for inflammation. Usually they can tell if there is inflammation based on the exam, but if there is any doubt they would do an ultrasound or MRI to see if there is inflammation. If there isn’t, you’re in the clear.
Honestly, nothing you’re saying screams JIA to me. I would expect some swelling or stiffness. Just knee pain can come from any number of knee conditions teens can have while growing. Pitting on two nails isn’t enough for a psoriasis diagnosis. His rash would have to be examined for psoriasis - my husband was diagnosed just based on examination with psoriasis on his scalp and nails and face. He didn’t have a biopsy or anything because his was a very classic presentation of psoriasis.
I can tag @crohnsinct - she can tell you more about psoriasis being diagnosed.
Does his rash on his chest and armpit go away in a day? Because that doesn’t sound like psoriasis to me.
Click to expand...
Thank you for your post! I don't think I can cry anymore but I somehow managed to.

The rash just showed up yesterday. I'll monitor him for a day and in the meantime wait for our doctor to get back for a referral. Agree about the exam as this is a completely new territory for me.

Pre-Crohn's I wouldnt sweat any of this. Now I somehow think these are all related, right?
 
They could be but honestly, we do have to remember that our kids are kids first, not Crohn's patients first. So they do get normal kid things like viruses, random rashes etc. We all tend to think everything is related to Crohn's but very often it has absolutely nothing to do with Crohn's or any other autoimmune condition. When my daughter was first diagnosed, I used to worry that stomach ache was something terrible but most of the time, it was something she ate or reflux! Every fever I worried about a serious infection, but it always a virus or strep or something like that.

Arthralgia, pain in the joint that is NOT inflammation, could be a possibility. But that tends to happen when Crohn's is flaring and I thought based on his last tests, everything was clean?

His knee pain could really be any number of things and it really honestly doesn't sound like arthritis to me. You would see swelling - it's pretty easy to see knee swelling, particularly when it's just one knee. And stiffness or redness or be able to feel warmth or some sign of arthritis besides pain. Do you know what his last CRP and ESR were by any chance?

Thank you for your post! I don't think I can cry anymore but I somehow managed to.
Click to expand...
Please consider seeing a therapist. Watching your child deal with a chronic illness is HARD. But you do find a "new normal," especially once your child is doing well. Enjoy him being a regular teenager! Take breaks from research and the forum and seeing doctors (besides his regular check-ups obviously).

And remember that stories you see on forums are naturally skewed because once kids are doing well, they and their parents tend to go on to enjoy life and tend to only come back here when things aren't going well. Make sure you're taking care of yourself as well as taking care of him. And you are taking care of him - it sounds like besides the skin issues, things are going quite well - right? The IUS and the last MRE were clean, right? Remind yourself of that!! Write it on post-it notes so you see it several times a day.
 
@asadmom - MLP and Maya142 have shared their experiences and messages. Take a break if possible. As MLP has stated that it's a marathon and it can get overwhelming. I wish you all the best.
 
Maya142 said:
They could be but honestly, we do have to remember that our kids are kids first, not Crohn's patients first. So they do get normal kid things like viruses, random rashes etc. We all tend to think everything is related to Crohn's but very often it has absolutely nothing to do with Crohn's or any other autoimmune condition. When my daughter was first diagnosed, I used to worry that stomach ache was something terrible but most of the time, it was something she ate or reflux! Every fever I worried about a serious infection, but it always a virus or strep or something like that.

Arthralgia, pain in the joint that is NOT inflammation, could be a possibility. But that tends to happen when Crohn's is flaring and I thought based on his last tests, everything was clean?

His knee pain could really be any number of things and it really honestly doesn't sound like arthritis to me. You would see swelling - it's pretty easy to see knee swelling, particularly when it's just one knee. And stiffness or redness or be able to feel warmth or some sign of arthritis besides pain. Do you know what his last CRP and ESR were by any chance?


Please consider seeing a therapist. Watching your child deal with a chronic illness is HARD. But you do find a "new normal," especially once your child is doing well. Enjoy him being a regular teenager! Take breaks from research and the forum and seeing doctors (besides his regular check-ups obviously).

And remember that stories you see on forums are naturally skewed because once kids are doing well, they and their parents tend to go on to enjoy life and tend to only come back here when things aren't going well. Make sure you're taking care of yourself as well as taking care of him. And you are taking care of him - it sounds like besides the skin issues, things are going quite well - right? The IUS and the last MRE were clean, right? Remind yourself of that!! Write it on post-it notes so you see it several times a day.
Click to expand...

09/29 CRP <0.2 MG/L
09/29 ESR 18 MM/HR

Right, his IUS and MRE were fine.

And of course you are right and thanks for the reminder that not everything points to Crohn's. I'll wait to see what the doc says tomorrow.

We did have a brief peaceful time until these interesting sightings showed up. Just need closure one way or another.
 
The esr is normal
Most labs have a normal range of 0-20 for kids depending on age
Adult males is 0 - 22

the range changes with age
And lab range can be different
As long as it’s in the normal range for your lab
It’s all good
 
my little penguin said:
The esr is normal
Most labs have a normal range of 0-20 for kids depending on age
Adult males is 0 - 22

the range changes with age
And lab range can be different
As long as it’s in the normal range for your lab
It’s all good
Click to expand...

Is going from 7 to 18 in 2 months a cause for concern?
 
Not a concern since the range changed
We had this happen a lot for various bloodwork items that change as kids get older
Or if you change labs for bloodwork.
 
ESR should really be below 10 in healthy children, and most often the results are 1 to 4 in healthy kids. When things were not under control for my son, his ESR was 15 to 30+, and now it's about 2. 18 is a positive signal for inflammation.
 
The first range is 0-15 and his is 7. Now it’s 18 which is still well within normal range (0-30). It’s not something I would worry about to be honest. I’d keep an eye on it at his next set of blood work, but that’s really all I’d do. I’d be more concerned if his CRP was high from an


For what it’s worth, our CHOP GI and rheumatologist both said ESR isn’t really as useful as CRP. They actually do not bother to even check ESR for my daughters. They say CRP is a much better measure. I think the reason is ESR can stay elevated from anything for a long time, an injury, a virus, and takes longer to come down. CRP goes up and down quickly so it’s more reflective of the current state. Of course, it is individual and you have to know your kids’ normal. Some kids have high ESRs when flaring but never have high CRPs, my daughters always tend to have high CRPs and the younger one also has a high ESR but we don’t really follow it regularly.

I would stick to one lab in the future, whether it’s Quest, LabCorp or Mount Sinai. Just for consistency.
 
J100, how did go with second opinion? I am also in Australia in Melbourne.

If you are looking for a independent second opinion will need to see a private gi specialising in children interstate mostly likely in Melbourne. There lists are very long. They are a rare.
 
@Catherine I did manage to get a second appointment on the 4th November. This was the earliest appointment even though it is a private appointment. I will provide an update post that date.
 
Good luck with appointment. How long are you into your Crohn journey? I am not here much.. I have two children with IBD. The oldest has Crohns and has been dx 11 years and is now 27. She is in hospital FNQ with possible flare.
 
Hi All - I came across this article. It is about a bacteria which is supposed to cause rheumatoid arthritis. Not sure if this has been peer reviewed and accepted by all in the scientific community. But if it is true then it is a good thing. Though it is not for Crohn's disease but it opens up possibilities about how the bacteria in the gut can affect people.

https://theconversation.com/newly-d...-a-culprit-behind-rheumatoid-arthritis-193267
 
J100 said:
Hi All - I came across this article. It is about a bacteria which is supposed to cause rheumatoid arthritis. Not sure if this has been peer reviewed and accepted by all in the scientific community. But if it is true then it is a good thing. Though it is not for Crohn's disease but it opens up possibilities about how the bacteria in the gut can affect people.

https://theconversation.com/newly-d...-a-culprit-behind-rheumatoid-arthritis-193267
Click to expand...

This is interesting. Rheumatoid arthritis (RA) leaves a certain recognizable type of lesion on the bones that can be distinguished from other types of joint damage such as osteoarthritis. And the striking thing is that archeological evidence suggests that RA appeared suddenly around the year 1600, since no skeletons of people who died before that time have the RA-type damage. As I recall, the very oldest evidence of RA comes not from a skeleton but from a European painting of a man that showed the striking gnarled and swollen hands and fingers that are typical of advanced RA.

This sudden appearance obviously suggests the the advent a new infectious agent as the cause of RA, but many decades of searching has not turned up an appropriate germ. There have been candidates proposed along the way, but so far none of them has held up. Perhaps this one will. If it does it opens up a whole new way of treating/preventing RA - with antibiotics and gut bacterial transplants instead of anti-inflammatories and immunosuppressants.
 
I know that for Spondyloarthritis - which encompasses Ankylosing Spondylitis and in kids, Enthesitis Related Arthritis or Juvenile Spondyloarthritis (as it used to be called) that they believe it starts in the gut and multiple studies have shown that both adults and kids with this type of arthritis have subclinical gut inflammation and sometimes ulceration. In some studies, the percentage is as high 80% of patients with AS/ERA. In 5-10%, that becomes overt IBD. It's been thought for at least a decade (!!) that this type of arthritis (which shares many genetic markers with IBD) starts in the gut, and some studies have shown that both kids and adults have certain bacteria in their guts that controls either don't have or have in a much lower concentration.
I hope that they will identify something similar in this type of arthritis and IBD soon. Interestingly, fecal microbiota transplants actually cause Crohn's flares, so I guess treatment will have to be much more targeted than just doing an FMT.
 
Hi All - a brief update. I had a second opinion with another paediatric gastroenterologist for my son. He was overall in agreement with the diagnosis and the treatment plan. When I discussed MAP being a possible cause, he is a fierce critic of this theory.
 
Hi @Maya142 - I think my son is doing ok on methotrexate. He had his blood tests 2 weeks ago. We don't have the blood test results of the last test. Fingers crossed, I am hoping that the results are normal. Thanks for asking.
 

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