My son had Crohn's from birth

Hi there world,
just to introduce ourselves and bring you up to date with where we are. Seamus is now 9 and has aggressive Crohn's colitis which has not responded to any prescription medication. He's managing to maintain a fairly normal life - as in, he goes to school, plays hockey, surfs, fights with his bro. But of course he has to cope with constant pain, fatigue, accidents at home and at school, interrupted sleep for toileting, not to mention a very restricted diet.
I am talking on his behalf, as his mum and carer. I know how much this disease impacts family life, physically and emotionally. I would be glad to share ideas and stories with other sufferers or family members.
We are being pushed towards surgery with the offer of trying some other meds first if he wants - I think vedolizumab and tacrolimus were on the table. He's on azathioprine daily, his only med at present.
I'm in favour of trying some natural remedies before surgery, as he is coping with his life and can't yet get his head around having a bag attatched, we know it may come to that at some point but will be sure to have tried other things first. We tried vitamin D from February through to April, with no improvement noted. I still give him an occasional dose. I'm going to start him on the protocol in "Listen to your Gut" by Jini Patel Thompson, which includes oregano oil, lots of good probiotics, and supplements of L-Glutamine and flaxseed oil. I'm adding a curcumin supplement too.
So I'll let you know how it goes...
Lots of hugs to all you fighters.
Saskia

Welcome. I wish the best for Seamus. You also might try a section on here called Parents of Kids with IBD.

:welcome:
We do have parents group with lots of kiddies who was dx way too young
Ds was dx at age 7
And is now 13

Is he on or has he tried een (exclusive enteral nutrition) formula only ??
It's as effective as steriods
But no side effects

The other one for refractory Crohns is the Crohns exclusive doet

It's partial een with a list of restrictive foods.
http://www.crohnsforum.com/showthread.php?t=71686


Going to Tag
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http://www.crohnsforum.com/forumdisplay.php?f=49


Parents group link

Hi little penguin,
Haven't tried EED yet, when he was a baby we had something like that as a formula, but it never helped bring him inti remission. I noticed it had sorbitol and some other badies in it so we stopped using it when he was about 2.
I'm currently investigating the foods that will help him the most. AANY fodmaps are bad, plus others.
Will post again soon, have got hungry children and a kitchen like a bombsite...
Thanks!

Even the ones with sorbitol etc...
May look bad
But compared to steriods - nothing in terms of side effects
We combine een with medication to boost the meds

EEN does work - there are LOTS of studies that show that. I know it sounds odd, considering the ingredients, but it's believed to change the gut microbiome (or something to that effect!!). Many kids on the forum have done it with lots of success. It can be used to induce remission while you wait for a maintenance medication to work (for example, Vedolizumab).

Your best bet is a semi-elemental or elemental formula. Those are broken down (elemental is completely broken down) so easy to absorb. Peptamen Jr and Pediasure Peptide are commonly used semi-elemental formulas. They don't taste the best, but kids do get used to them.

If your kiddo is unable to drink enough, an feeding tube can be used. My daughter has one and it's not as awful as it sounds, I promise.

There are lots parents of kids on here who have gone into remission with EEN and it does also help with growth, gaining weight and usually with pain too.

A couple more questions - what other meds has he tried? Has he tried Stelara (ustekinumab)? I'm assuming he's tried Remicade/Humira? How about Methotrexate instead of Azathioprine?

We have tried Tumeric and fish oil as supplements but I can't say that they have helped (but they didn't hurt, though fish oil can cause easy bruising, so we stopped it). We also give vitamin D when my daughter is low.

Definitely check out the Parents' Forum - lots of info there.

Hi Maya,
We are in New Zealand so the elemental foods offered here are different ones, but I am still going to talk to his specialist about using them. The last time we asked they thought his diet was sufficient, but they are flexible, our Dr is Prof. Andrew Day, I trust him and he's a great listener, and is willing to let us try "alternative " therapies. Seamus has been on Methotrexate for a year(didn't work) Infliximab for a year (made him worse, with horrendous flu-like syptoms for weeks) and is only on aza now. I think Andrew might have mentioned stelara, I will chase that up as well.
When he has big flare up we have been using ciprofloxacin, for anywhere between 2 and 4 weeks, but the last time we used it, it seemed not to work, hence me searching alternatives. I will still use it if we need to, I'm not anti-antibiotic, just think I need to repopulate his gut with the good stuff.
On the plus side, he has been on the oregano oil for four days now, with probiotics and the other sups I mentioned, and he is already improving, the pain went after the third day(!) and he's only going once a night instead of three or four times. I'm quite amazed, and he's started to take large capsules for the first time, instead of mixing everything in a smoothie. So woo hoo! maybe there is a light at the end of the tunnel...

Hi Saskia.
I am really sorry to hear about your son's condition.
Are you aware of the MAP hypothesis I wonder? Recent research indicate the in some cases Crohn's may be caused by a mycobacterium-infection that we get primarily by ingesting dairy and meat from infected cows. It is notoriously hard to culture the bug, but recently a laboratorium in Christchurch have had success with a method that can diagnose whether MAP is present in blood. They culture it for over a month! I just sent blood off to get tested, and the result just came back positive.
The MAP hypothesis is controversial, and may not be relevant in your son's case. But since you live in NZ it would be fairly easy for you to send blood off for testing to https://www.otakaropathways.co.nz.

I have no connection or financial interest in the company, by the way

I am glad to hear your son has improved upon introducing different supplements.