Search results

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 @Catherine - hope your daughter is doing well.

Hi @petkov Hope you are doing well. I can suggest is that talk to a dietitian who specialises in Crohn's diet. Crohn's disease exclusion diet is an option. Your gastroenterologist should be able to recommend you one. Your gastroenterologist and dietitian and yourself should be able to...

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...

@Catherine thanks for your message. My son was diagnosed in May of this year. My journey has just begun. I wish your children the best.

@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.

@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.

Hi M Hi MLP thanks for your response. It is good to know that methotrexate has worked for your son.

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...

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...

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 Relman and advised that the study is no longer active and it had concluded a while ago.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...

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.

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/projects/the-microbiome-in-early-childhood/veo-ibd-and-the-microbiome/contact-the-veo-ibd-research-team It is asking for a valid US phone during...

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.

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...

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...

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...

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...

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...

https://humanpara.org/how-map-becomes-crohns/# Forgot the URL. I have pasted it now.