Bowel Disease (very long)

[Guest guest]

I'm reading the posts on probiotics/FOS and I'm finding all of this

fascinating.

I have a curiosity question if anyone is up to the challenge of answering

it. We've been searching for about 2 years now with little success.

My 21 month old son has some sort of severe bowel issue(s). At two weeks of

age, we brought him to the ER for bloody diarrhea where they did a battery

of tests and found nothing. At that time they surmised it was a milk/soy

allergy and that I should stop breastfeeding (don't get me started on what a

big mistake that was) and put him on Nutramigen (formula that has

" pre-digested " proteins). Around the same time, it became obvious that he

had another issue going on as he was projectile vomiting several times a

day. At 2 months, he had a barium study to check for reflux which came back

negative. The entire time since his visit to the ER, Aidan has very mucousy

stools - in fact they were more mucus than they were fecal matter and we

could never figure out why they were like that. Aidan eventually failed on

Nutramigen and was put on Neocate (formula broken down into individual amino

acids). He seemed to do well on it, his reflux was the same as it always

had been despite medication (which I eventually too him off of due to

ineffectiveness). His stools were green on Neocate, but the mucus and blood

seemed to decrease considerably.

Fast forward to 4 months of age when he it was surmised by a pediatric GI

that he probably did have reflux after all and we were advised to get him on

solids as soon as possible. So, we started him on rice cereal at the

recommendation of the GI. Within 5 hours, Aidan had mucus and blood in his

stool and was projectile vomiting again. We pulled the rice cereal and

decided to wait a month and try again. Same story happened at 5, 6 and 7

months.

Over the last few months, the doctors had performed many tests. Occult

blood fecal tests (positive for blood 4x in a row), tests for bad bacteria

(all negative), and a battery of blood tests (only thing abnormal was IgE or

IgA - I forget - level at 21 but doc said they didn't worry about it until

it was in 1000's). On my own, on a hunch, I decided to try adding digestive

enzymes to his diet and amazingly it seemed to work. All of a sudden he

could tolerate rice cereal and applesauce without having mucus or blood in

his stool or vomiting. Of course, then he had oral issues and a very

trippy gag reflex.

At 12 months I was able to back him off Neocate onto Nutramigen and

eventually onto soy formula as long as I used the digestive enzymes. If I

forgot the enzymes for just one meal, everything came rushing back within

4-5 hours.

Fast forward to the age of 14 months when we started my autistic son on the

gluten free/casein free diet. For simplicity sake, we put Aidan on the diet

as well. After a month on the diet, we noticed that his reflux spitups had

decreased considerably and after just a couple months on the diet, we

noticed that the reflux was completely under control. However, if he

consumed gluten or casein, everything came rushing back - vomiting, mucus

and bloody diarrhea.

Over the last several months, we've watch food after food disappear from his

diet. At this point he cannot eat gluten, casein, soy, vinegar, tomatoes,

potatoes, grains of any kind (rice, quinoa, etc.) and tree nuts. We tried

the SCD diet but he became intolerant to the nuts the diet is based on and

he couldn't have the dairy products. He's existing on a diet of eggs

(organic/free range), organic fruits and vegetables and fresh meats. He

cannot have any raw foods - all fruits and vegetables need to be cooked and

pureed otherwise he will have undigested food in his stool despite still

giving him enzymes. If he eats any of the above foods he will get his

reflux back, mucus and blood in stool and on occasion he will literally get

burned (chemically) by his stool - he's gotten 2nd degree chemical burns on

the insides of this thighs on a few different occasions.

He's currently under the care of a chiropractor/nutritionist and is on an

intense supplement program. After watching food after food drop out of his

diet, we decided to take a different approach to his healing because at this

point it's clear that he cannot tolerate food in general. However some

foods just don't affect him like others do.

OK, so now that you know the history here are my questions:

1) What is this? What is doing this to him? I've been searching for

almost 2 years in vain to find out what could be doing this to him and I've

come up with nothing.

2) How could this happen in a child so young? What causes this kind

of catastrophic damage?

3) Can it be healed? If so, how? If not, what then?

We are working everyday to try to help him and it seems that nothing is

working and we are continuing to lose foods. I have nightmares of him with

a stomach tube or on TPN or worse because his body just isn't working.

This child is also developmentally delayed and speech delayed. He has not

said his first word and is using speech language to communicate. He stopped

growing at one point, but I think with him basically being on baby food and

enzymes, we've finally gotten his body to take up some nutrients and use

them. He was born in the 90th percentile for height and 95th for weight.

Now he's in the 95th percentile for height and 25th percentile for weight

which has dropped from the 75th percentile over the last few months.

Any light you can shed on this would be most appreciated.

Thanks in advance

Alese