Perhaps an introduction is in order.

Please, please, please consider changing the folic acid to L-methyltetrahydrofolate, quatrefolic or metafolin versions.

Cheese is very hard if you believe you are dealing with histamine issues. Can you get him to stop eating the annie's? at the very least use goat cheese to make your own mac and cheese (sheep cheese would be even better because it's the smallest casein molecule). Id consider cutting all the dairy.. He is 13, he cant eat like a toddler. Is he on the spectrum? If not his reason must prevail.

When discussing histamine issues a couple genetic polymorphisms can really make things difficult. The hardest thing for a parent to do is diet with a child. It just sucks and its no fun and it's unfair. All their friends are running around with a personal pizza, a bag of doritos and a coke.. so its hard to understand how they have to be so restricted. This is a good start for you http://thelowhistaminechef.com/histamine-mast-cells-and-methylation-a-mother-battles-mcad/. Although your son has not been dxed with MCAD, its good info on reducing histamine burden and a primer into methylation and some of the genetics involved. Maybe it would be helpful to you. The powerpoint is very good too.

Im so sorry that your son is going through this.

Ok so I am confused what medication did they give him for the pancolitis? Just the pred?

PathogenKiller said...
Please, please, please consider changing the folic acid to L-methyltetrahydrofolate, quatrefolic or metafolin versions.

Cheese is very hard if you believe you are dealing with histamine issues. Can you get him to stop eating the annie's? at the very least use goat cheese to make your own mac and cheese (sheep cheese would be even better because it's the smallest casein molecule). Id consider cutting all the dairy.. He is 13, he cant eat like a toddler. Is he on the spectrum? If not his reason must prevail.
...

Im so sorry that your son is going through this.

Yes, I read something you wrote in another post about the folic acid. Thank you for mentioning it here again.

We have not eaten cheese in months; in March we started "Failsafe" diet to determine the food intolerances. So yes I am aware of the cheese issue. But I thought that if he would eat SOMETHING and I gave him a DAO that it might be okay... So he had only eaten the Annie's these last couple days. I would like to cut out all dairy. When this first started he wouldn't eat anything. We'd been dairy free in the house for a while for other reasons, but my husband suggested milk (we used to drink raw cow's milk). He said that sounded good and went on to drink fresh milk only for a few weeks. Further histamine/inflammation research lead me to that not being a good idea so we stopped that and moved on to trying to get him to eat SCD type foods. Up. Hill. Battle. He's on the ADD side of the spectrum only when on salicylates and amines. He's been very stubborn, probably for many reasons. I've been trying to give him grace and get him to see the other side. Finally tonight I think we had a break through. I've been telling him that something is off if he has such disdain for chicken soup, pear juice, or even fresh milk (and will dump them all when I'm not looking) and other good foods but will beg and plead for a pizza, cookie or ice cream (non of which we keep in the house or eat regularly...except I allowed unfortunate amounts of Hagen Daz vanilla ice cream while he was in the hospital in lieu of eating their food). I thought the lack of appetite was a symptom of the disease, but the cravings tell me imbalance, infection...

Anyway, tonight he ate some chicken soup, said it was good and he is done requesting sweets. He is ready for a low chemical (salicylate and histamine) version of SCD. His eyes are being opened more to how foods ARE affecting him and maybe mom was right. I hope his reason prevails tomorrow.

Old Hat said...
I would not give him high-dose vit C. The B & D vitamins + iron & calcium are vastly more important for UCers. Remember that a child's bones & teeth are still developing. So I don't think it's wrong to allow him mac/cheese, especially if it makes him comfortable to have some familiar food. Not every UCer is intolerant of dairy foods or gluten!!!!!!!!!! He needs calories to burn at this point. Beware of advice that discounts or ridicules all doctors or constantly harps about junk food diets. We didn't get UC from drinking Coke & eating pizza or Fritos all day! (Not that I recommend them, either.) / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)

Thank you. The Vitamin C I was mostly giving him to help with the histamine issues; it is a natural anti-histamine. Is it counter-productive to take it from the UC side? Or were you saying not to neglect the other ones mentioned?

And we have been gluten free for several years, for behavior reasons, though this dear oldest of mine was known to sneak things when he thought he could. ;) Oh calories...this elusive bird I've been trying to catch. ?Something he will eat that won't adversely affect the UC or exacerbate his food intolerance issues? Trying to get him to suck up some coconut milk to add some calories, but that's not working out so well. He's been at +/-1,000/day this week. :( I asked one of the doctors in the hospital about this and he said he won't starve himself. Just keep the things out of the house I don't think he should eat. Sounds good...until he doesn't eat and I think he's too unstable and just may starve himself!

From my infantile research, I suspect that UC is just a symptom and not the actual problem. Tonight my son said that "colitis" is the enemy, but I think "colitis" (inflammed colon) is more like the kid who just got beat up after school. And who knows the problem (that fecal transplant deal may be a clue). As with a runny nose, there very well may be more than one cause. Just my thoughts, I'm wise enough to know I don't know everything. I'm eager to learn.

simplified,

Welcome to the forum.

I am sorry your son is suffering so.

PathogenKiller is right on, she really knows her stuff!

Have you given any thought to camel milk ( raw)? There is info out there about it helping a great deal with food intolerances, while giving incredible nutrition, and helping with UC and Crohn's symptoms as well. But it's not a short term thing; it's got to be done for at least 8-9 months although results can be seen in as short as a few weeks.

Also LDN, low dose naltrexone?

Feel free to email me and I can go into these with you at greater length.

 

Old Hat said...
Another parent who is a forum member here, Antiflare, may be able to advise you. He posted last winter about his 14 yr-old son dealing with a new UC diagnosis. Keylime's son was diagnosed around age 11 and her daughter at age 8. They have all achieved remission from UC under continuing medical care. Where are you located? (Some places have better pediatric gastroenterology than others.) / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)

Thanks, I'd be interested to hear what they have to say. I think I'll do a search on here. We are near Grand Rapids, MI.

Hi Simplified.
My son is now 15, it was when he was actually 10/11 years old when he started to spot blood. Whilst waiting to see a specialist which took a couple of months he progressed to full blown flare and painting the toilet bowl red.
He was diagnosed with Pan colitis and our journey and fight back started then.
He was prescribed 1 asacol supp nightly, and 3 x 2 Pentasa's daily. I got him onto Omega 3s, and Vit D.
Things improved but never ever went away, there was the horror of a public disaster for him but luckily it went unnoticed by all, but that really freaked him out.

He started to set his alarm early(11-12yrs old) and got up at 5am to do another asacol supp', then back to bed.
We started him on VSL3 probiotics, we only get the standard strength in Scotland, so we gave him 4 x sachets a day in homemade lactose free yogurt, mixed with some tinned peaches, and some prebiotics mixed in.
He still takes between 2 and 4 sachets of VSL3 a day.
He discovered himself that taking two asacol supp's at once meant he didn't show any blood stripping on his pooh until the third pooh.
I passed on these developments to this forum and I was told about rectal foams, which we can get in Scotland.
He has been administering a salofalk foam enema every night and takes his pentasa now at 2 x 3 tablets.
We also give him a small dose of L Glutamine per day to assist with colon repair.
He has not had a major flare now for over two years. If he ever gets the runs we keep him off school for the day or two, they dont need any stress worrying about toilets. He has a toilet pass at school and he knows to go during class and not at break time, more private, cleaner etc.
Make sure he starts to become a regular hand washer, easy way for bugs to get back in and start things going wrong.
We controlled his diet pretty good, although now he is pushing things. We stopped sugars, red meat, we went gluten free for a while, dairy free, no fizzy drinks in fact anything that could possibly irritate or inflame him was cut out. All food became home made. Plenty of chicken and turkey, make your own turkey burgers, ripe bananas, plenty of good fluids, rice, peppers, spinach, cucumbers, apples (peeled), pears (peeled) peaches. Some potatoes now, we bought a steam frier, you just add a tbl sp of olive oil and hey presto home made healthy chips! (healthy ish)
We have relaxed a bit now on the foods, but we keep the processed guff away. We have a pizza maybe once a month and somtimes a KFC. So far no problems.
Its a juggling act, you want them to have as much a normal childhood as they can but it is also our job to make sure they get the best chance.
I have lots to share with you if you need to talk to another parent, I'm not sure if I can pass on my email to you (forum rules etc) perhaps a MOD could tell me how to go about that.
We are not over this, its still there, he still has calpotectin levels that are above the norm, so there is still some inflamation. But he is living his life again and is happy.
You sound like you have the right attitude to attack this, you are part of his treatment so don't let the doctors try and silence your opinions or questions.
This place is the place where hope lives.

Best wishes to you and your son from Scotland

Steve

Wow, thank you so much for all the information. I would love to talk with you and get your perspective on things. Am I reading your signature right, that you have this too!?

Sure do, but mine is chicken feed compared to my sons.
Take a note of my email and get in touch whenever you like.

There is so much to try, some of it will help some will not, but if some does then you are already starting to win.

Take care

Steve

Old Hat said...
I would not give him high-dose vit C. The B & D vitamins + iron & calcium are vastly more important for UCers. Remember that a child's bones & teeth are still developing. So I don't think it's wrong to allow him mac/cheese, especially if it makes him comfortable to have some familiar food. Not every UCer is intolerant of dairy foods or gluten!!!!!!!!!! He needs calories to burn at this point. Beware of advice that discounts or ridicules all doctors or constantly harps about junk food diets. We didn't get UC from drinking Coke & eating pizza or Fritos all day! (Not that I recommend them, either.) / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)

Well put 👍

Any of those active forms of folate are fine. Better to supplement active forms then take a chance ESP when you are giving a higher dose. You mention being off dairy, but mention raw milks.

First, the inflammatory effects of milk take at least a month to clear he system. Anytime you eat just a little it effects the immune system. I've come to ignore most of the folks that say they don't react to milk because the issue mostly seems to be they react to everything, so they have no idea what the root is and just keep eating what they like cause they feel like it doesn't matter. Very few who give you that advice will not have active symptoms of UC. Trust your gut and go scd for a good trial to rule it out. Dairy and gluten cause inflammation study after study after study will affirm this. They taste delicious and make life alot easier so nobody want to believe this without kicking and screaming to the edge.

Second, raw milk is kinda Russian roulette on an ulcerated intestine and autoimmune disease overloaded immune system.

Post Edited (PathogenKiller) : 8/8/2013 8:34:00 PM (GMT-6)

Curious as to what vitamin d level was at, that was low and yet they're not sure supplementation is in order?