Ben's deal - the sweetened condensed version

I'm warning you right up front, this is long. But I know some of you have wondered, so. Here goes.  

Some of you know that I have been on a really restricted diet for some time now. My son apparently has a (really common) condition called something similar to protein-induced colitis (I think I missed a word in there, but that's most of it), which means that when he ingests big proteins, his little digestive system gets irritated. I had seen some blood in his stools (back when he was 13 weeks old), and we were sent to a GI specialist. In the meantime, Ben was happy, not fussy, gaining tons of weight, etc. I called Josh's uncle (who is a ped. NP), and he put me at ease, saying blood in the stool of a breastfed baby is common, and that he could not recall a case where it turned into anything serious. I was encouraged. But, the GI doc we first saw took a really serious approach and began to modify my diet. He first removed all dairy, nuts, and beef. I brought him a poopy diaper every week for four weeks, and he tested them for blood. After four weeks when there was still a microscopic amount of blood (called occult blood, invisible to our eyes but shows up on tests), the GI doctor recommended I either stop breastfeeding or stop eating proteins myself, so that they wouldn't get into my milk. Thus the chicken and rice diet that many of you have probably heard me complaining about. I didn't totally buy that there was anything wrong with him (yet), and I didn't want to stop breastfeeding, so I opted to modify my diet. Plain old chicken and rice eliminated the problem, so we started to re-introduce foods. I would try something new and bring the doctor a diaper after a week. When we got to gluten (bread and pasta), there was blood again. We took my diet back down to chicken and rice, fruit and vegetables, and again there was no blood. So it seemed that Ben was sensitive to gluten. 

Long story short, I had a really hard time getting that GI doctor to work with me. I always had to call him to get test results, and when he called me back he was in a rush and was short with me, la la la. I'm a nurse, I figured I've learned how to talk to a busy doctor, but this guy just wasn't doing it for me. So ANYway, I stopped the insanity right there and decided to keep my diet to those four things and forget about testing diapers every week.  

We went back to our regular pediatrician for a well-baby check and he recommended a different pediatric GI doctor up in Syracuse. I also mentioned that Ben sometimes breaks out when I nurse him, which is really scary considering that I wasn't hardly eating ANYTHING... I was convinced that my poor child was going to grow up with Celiac disease (no gluten... no birthday cake... no cookies... etc.) and really strong food allergies! So, the pediatrician also recommended we see an allergist.  

OK, so Monday we saw the GI doctor in Syracuse. He is the one who actually took the time to explain the protein-induced colitis thing to me. If I understood him correctly, Ben's case isn't that bad, and it is apparently a very common condition. If Ben were vomiting/having diarrhea, or not gaining weight, was very colicky/fussy or had large amounts of blood in his stool, then he would recommend stopping breastfeeding. But, he said, the formula Ben would have to be on (because he is sensitive to so many different proteins) is sort of pre-digested, meaning the proteins are already broken down. He said it costs $50 a can, and most babies don't like the taste of it, so then you end up with a child who won't eat and is losing weight for that reason. He encouraged me to keep nursing AND he said not to bother restricting my diet AT ALL!

I about fell off my chair!  

He said in cases like this you need to "treat the patient, not the paper" - meaning, yes, Ben has had blood in his stool, but he doesn't seem to be in any distress, and is still growing and moving and gaining weight and isn't colicky, etc.  

So then we went to see the allergist. She DID recommend switching Ben to that pre-digested formula, but she also said that if I am adamant about continuing to nurse him, that it probably won't hurt him. She said he had a "classic case" and that it is very common, and that he will grow out of it completely. (Oh, and the GI doctor said he'd grow out of all of this too.) She tested him for 14 different allergens, including milk, soy, corn, egg, wheat, citrus, nuts, and dogs (all foods I had been avoiding, and the dog one was something I'd wondered about), among other things ... and he tested negative for ALL of them.  

This time, I cried.  

She said I don't need to modify my diet at ALL, not even dairy. I was just pretty much speechless. She couldn't explain why he sometimes breaks out, but was not concerned about it. I didn't know what to say. I have been so, so, so worried about Ben. It has been affecting every aspect of my life! Josh says I seem like a new woman since we learned all of this new information. Basically, even though the original doctor seemed to be correct in his diagnosis, his intervention was a little over the top for our given case. We are supposed to keep an eye on his stools, possibly check his blood count if the pediatrician recommends it, and that's it. THAT'S IT.  

I had been praying for my little boy every night, this same prayer over and over: "I know you gave me Ben and everything that is him for a reason, God. I know you gave him to me because you knew I could handle him. And if you choose to allow him to have these allergies and sensitivities for the rest of his life, I will do my best to care for him and love him in the way you would like me to. But I also know that you are capable of healing, healing anything, and I believe that you can heal Ben. If it is your will to heal my son, I am prepared to give you all the glory for it." Over and over. It made me cry, every time.  

I don't know if this "counts" as healing, but I know that there was a situation in my life that was overwhelming me... that I was doing all that I could to fix on my own without any luck... and then one day - bingo. It's gone. I know, I believe with all my heart, that God can make a way where there doesn't seem to be a way available, that he works with impossibilities in a way that no one else can. I don't know if God healed my son or if he just placed a good doctor in our lives, but either way - I am so thankful. 

........and THAT, my friends, was the short version. I apologize for the length, really I do - but if I had added in all the details and emotions you'd still be reading! :)