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13 y/o son recently dx...advice on AMAT therapy

Hi all! So I’ve kinda stumbled along this forum amongst my hours and hours of researching after my son was dx with Crohn’s 5 months ago. My son, Ely, is the first in our family to have Crohn’s and the dx came as quite a surprise to us (now in hindsight, could maybe have picked up on it sooner). Ely was originally out on Prednisone after his scopes and got inflammation down and since then we have been managaing him with SCD diet alone. He is virtually symptom free and has been very good with compliance although I don’t now if he will adhere to the strictness of the diet as he gets older??
My husband and I are health care providers and have been seeking AMAT therapy from the beginning. Sorry for the long post but looking for advice, help, support, pros and cons from anyone who has experienced AMAT therapy themselves.
We do have the meds currently being sent to us. Ely will be on clarithromycin, clofazimine and Rifabutin. If anyone has experience with these meds, I would love to hear any first hand accounts whether good or bad!
Thank you so much!!
 

my little penguin

Moderator
Staff member
We have a parents group here
A few parents have had there kids on Scd Plus meds
And some on variations of the triple abx cocktail
Please check there
My kiddo was dx at age 7 and now 17
Sorry you have to go through this
Restrictions on diet are far easier with little kids
And things get much more complex when they are true “teens” but everyone is different

no right or wrong way to treat crohns
The thing that matters is what your child’s body responds to (sometimes it’s what we as parents want and sometimes it what the doc wants and sometimes it’s something completely different)

is your child’s Gi prescribing the abx therapy ?
I know chop uses abx therapy in crohns as well as a few other pediatric places
 

crohnsinct

Well-known member
Hi there! My daughter O has pretty severe disease. She is on SCD and has tried antibiotic therapy a few times with no success. HOWEVER, she was on the verge of a colectomy and really didn't want the surgery so asked to try again and this time they "seem" to be working. She is also on Entyvio, Humira and budesonide so hard to say it is the antibiotics that are doing the trick but she didn't get better until they were added.

We are members of an SCD Families group and on there many other families who have had the same experience with antibiotic treatment.

The thing is, what works for one person doesn't work for another. Doses, combinations etc all vary. It is hit or miss and just keep trying.

SCD has better success with small bowel disease. Antibiotics have better success with colonic disease. Where is most of your son's disease burden? Where are you located? Did his GI suggest SCD or is it something you requested? Has he had any follow up labs? SCD is pretty famous for resolving symptoms but not having as good success at mucosal healing. That isn't to say you can't achieve it. Many do but you just have to be extra vigilant about follow up testing as the absence of symptoms can lull you into false security.

There is a site that has SCD friendly practitioners listed and as a general rule, SCD friendly practitioners generally support antibiotic therapy but that list is even smaller, mostly because pediatricians are less likely to try therapies that do not have a proven track record because kids are not little adults and timing is key to optimizing growth, brain development etc.
 
My son has inflammation in the terminal ileum and rectum with a fistula. Our main “option” has been to go on biologics immediately. We opted not to and incorporated prednisone to get initial inflammation down and then on to the diet. Don’t get me wrong...I think there are definitely a time and place for biologics but I believe the AMAT therapy may stand a chance too.
Im just worried that he seems to be doing so well now on the diet that the antibiotics will upset the boat and cause symptoms again...which of course may be necessary to get through initially. I’m just looking for some advice or recommendations from people who have actually done this before...mostly just scared of the unknown which seems to just be a day in the life of a Crohn’s parent😕
 

crohnsinct

Well-known member
Most of the people I know who use antibiotic therapy and not the other drugs are on SCD also and the antibiotics haven’t upset anything. That said, they also have all achieved initial healing with exclusive enteral nutrition which in studies shows that it induces remission as good as prednisone but has the added benefit of mucosal healing. So I am not sure about using the antibiotics after prednisone although my daughter uses them in addition to steroids and two biologics and they havent upset anything.

It’s true there is no hard and fast rule with Crohn’s. You just don’t know until you try.

Goid luck and keep us posted!
 
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