Severe Crohn's disease is killing my children

I just want to offer support, and tell you how sorry I am that you a going through such a difficult time.

I don't think I've ever heard a story like yours. I can't imagine how difficult this must be for you.

The only thing I could suggest is perhaps consider one of the clinical trials going on right now. There's also an organization in London that is close to getting a vaccine for Crohn's out. You can get more information at www.actionresearch.co.uk.

There's also QUbiologics that I believe have trials going on.

I really hope you have good Doctors working with you right now. You might ever resort to contacting the Clevelend Clinic or Mayo Clinic, as they both have excellent reputaions.

Otherwise, I can only offer you my prayers. Please keep us updated.

There is a budding theory of Crohn's and a pathogen called MAP. Search for info on this and maybe the researchers in that field will be able to help you.

Thank you so much everyone for responding and for prayers for our family.

We are doing an SCD-like diet called GAPS, which we started two years ago. Our two sons became severely ill while on the diet, but we are still on it.

I take Primal Defense, a probiotic, which has held back symptoms of severe IBS for 15 years. Before I started taking it, my whole family had chronic diarrhea, and when I started taking it they mostly stopped being sick. about a year ago, I realized I am starting to react badly to it, so I stopped taking it. A few months later, everyone in my family started to get sick again, but my sons got really sick with severe, non-responsive Crohn's disease. I am trying to go back up on Primal Defense, but the die-off and reactions are difficult and it's taking me a long time.

This is why I believe our illness is caused by a pathogen. I am looking into MAP, and am trying to contact Dr. Brasco or other doctors about being tested and treated for MAP. Our current doctor is world-renowned and well-respected, but has consistently resisted my ideas of a pathogenic origin to our family's illness.

BTW, my daughter with Crohn's and schizophrenia started taking Metagenics Candibactin AR and BR about two months ago. She started having increased symptoms while on it, and then threw up. After that her schizophrenia has vanished, and it has been about six weeks now. Her rectal bleeding has also greatly diminished. This is another reason I think it is a pathogen we are fighting.

Post Edited (severecrohnsmom) : 1/3/2015 3:00:58 AM (GMT-7)

Yes, the GAPS paradigm is a very appropriate fit to our family and we take the gaps diet seriously. It is hard though to do it all, and horribly expensive, but we do our best. Thanks so much for the tip on the gaps group - I'll check it out.

My GI was willing to consider anti-MAP therapy for me or refer me to a Crohn's researcher in London. (In the end I never followed up on it; I just went for surgery.) He didn't have much faith in it but at least he was willing to try. If you lived in the UK, I'd gladly give you his name, but I guess travelling to the UK is not an option with 5 sick kids.

There must be someone in the US who will be willing to try anti-MAP therapy! Stem cell transplant may be another option to consider. It's heartbreaking your family are this severely impaired: I hope you can find a treatment which works for your children.

@severcrohnsmom

First - I'm terribly sorry to hear of your children's situation. It's hard for many to read your post and not feel a deep anger and frustration for not being able to help more.

Second - Please visit this link crohnsmapvaccine.com/map-specialists-2/ There is a listing of a few doctors that you can reach immediately if you want to go down the MAP route. A short phone call to anyone on the list will provide you with some welcome and timely information directly from them.

As well, people have written directly to Professor Herman Taylor and received responses. Instinct tells me if you simply email your story directly to him you will hear back. At the same time please do contact one of the other doctors on the list that is closer to you. Again, I'd suggest simply picking up the phone and calling versus email if you can.

It does not matter if you are not local, they will find a way to work with you.

All the best and please keep us updated on your direction and progress.

Post Edited (Canada Mark) : 1/5/2015 8:04:30 PM (GMT-7)

With Crohn's affecting ALL the children, it definitely seems suspicious. Usually IBD doesn't get passed down so strongly, so I do not think it would hurt to investigate a pathogenic origin to your diseases.

Additionally, the organization 23andme is doing an IBD study and I feel that if it turns out there isn't a pathogenic cause, contributing genetic information from your family may help isolate the genes responsible for Crohn's, as it seems it would be very strongly genetic IF it turns out you all don't have a pathogen. The study is free of charge and available if you good "23andme IBD study".

I can't imagine what it is like to have so many family members go through your disease. I very much hope you can get this all sorted out quickly and find a great doctor who will listen to your concerns!

Severcrohnsmom,

I wanted to offer my support and say that I have a son w/ Crohn's who was in a similar desperate situation living in the hospital getting multiple blood transfusions a week from blood loss. Nothing helped him at all other than prednisone which did not allow him to grow and was turning his bones to mush. We were desperate!

We fought like crazy to get permission to do an experimental autologous Bone Marrow Transplant (aka. HEMATOPOIETIC STEM CELL THERAPY) based on Paul Szabolcs' protocol, he was at Duke at the time and is now at University of Pittsburgh. We did our BMT at UCSF. Dr. Szabolcs is recruiting participants for a clinical trial at Pitt right now.
https://clinicaltrials.gov/ct2/show/NCT00692939?term=Autologous+Stem+Cell+Transplantation+for+pediatric+Crohn%27s+Disease&rank=1

We were turned down three times, but kept pushing and our BMT doctor somehow finally convinced the "board" to allow us to do it. Which means taking his white blood cell count down to zero with Chemo, basically "resetting" his immune function.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3921504/

After his immune function gradually built up again we started Remicade, which we tried before with absolutely no effect. I am ecstatic to say that he has been in remission on it for the past almost four years and has been able to catch up physically to his peers. He did not walk until 2 years old (diagnosed at 10 months) and we did the BMT when he was 4. The procedure basically saved his life.

Here's our blog about the experience.
http://bowiebmt.blogspot.com/2011/03/explanation.html

In terms of the Pathogen angle I do not know much, but there is a lot going on in terms of Fecal Microbal Transplantation including clinical trails. This New Yorker article talks about it.
http://www.newyorker.com/magazine/2014/12/01/excrement-experiment

There is a clinical trial recruiting for that as well in Seattle.
https://clinicaltrials.gov/ct2/show/NCT02272868

Best of luck and I wish there was something I could do to help.

With an Autologous "transplant" they do not graft another persons bone marrow, just kill off the patients Bone Marrow and stimulate it to re-generate. Sometimes the immune function does not come back which leaves the patient susceptible to everything and death can result (rarely). After my son's Autologous transplant all of his previous vaccinations and encounters with viruses or bacteria that had trained his immune system were erased. Because he was so young and his cells turn over so fast his white blood count rebounded pretty quickly (4 - 6 months). After it was all the way back his inflammatory markers started to rise so we started Remicade quickly without re-trying any of the softer stuff. That was based on the idea supported by studies regarding IDB intervention which is to hit it hard and hit it early.

An allogenic transplant, where a Bone Marrow donor's cells are grafted into the patient, effectively giving the patient the immune function of the donor, like the kind that they do for Leukemia, can be curative. It is much, much more dangerous for the patient because there is a pretty high chance of rejection and things like graft vs host disease. But the possibly of being cured is powerful. Trying an allogenic transplant was/is our nuclear option if he ever gets refractory disease again.

The info below is from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3921504/
Over subsequent follow-up, the percentage of patients in remission without the need for CD treatment was 91%, 63%, 57%, 39% and 19% after one, two, three, four and five years, respectively. Regardless of the medication taken, the percentage of patients annually in remission in the 5 years after transplantation was 70%-80%. Eighty percent of patients were in corticosteroid-free remission each year, in the 5 years after transplantation.

The white paper that documented these remission rates above was the evidence that supported our doctors demand to let us do the procedure. It came out 1 month before they let us do it. Luckily we were at UCSF and our Dr. basically told the state governing board that if they really are who they claim to be at the forefront of medicine then why is Duke and Emory experimenting with this intervention for IBD. I will be forever indebted to her.

The results of another observational study of the EMBT, documenting the course of 900 patients with various diseases that were subjected to autologous HSCT between 1996-2007, showed the 5-year survival rate to be 85%, with a patient disease-free rate of 43% - though there were important variations depending on disease type.