Friday, August 6, 2010

The Battle Rages On, But...

I am thanking God for leading us in this rollercoaster journey.

Long ago, the twins started out at a large pediatrician’s office where they were until around six months old. Although I had to hold her hand through much of BabyM and BabyR’s initial GI difficulties in life – I liked our doctor quite a lot. Early on the office refused to accommodate the alternate vaccine schedule we wanted to do (in particular because we feared complicating the twin’s issues with loads of different vaccines). They did not refuse to keep the twins on as patients, but they sent us to the PA Vaccine Clinic since they would administer which ever vaccines you requested. I filled out the paperwork at the vaccine clinic INCLUDING the questions about allergies. They were so intimidated by the allergy issues that they refused to give ANY vaccines to the kids and insisted that the shots needed to be given with supervision of a doctor (the clinic was run by nurses) just in case there were complications.

Right there in the clinic I called the pediatricians office, explained the situation, and pleaded with them to make an exception on their vaccine rule. They refused. As I was leaving the clinic, one of the women behind the desk mentioned that she might know of a doctor who would do an alternate schedule. She gave me a name and phone number which I slipped into the vaccine book that I had brought with me.

When I called the doctor’s office they told me that they did not offer vaccines at all. The receptionist told me that it was probably because as a family practice they didn’t see many children. I slipped the little piece of paper back in the book and kept looking for a pediatrician that could help us. We did find one. He turned out to be a vaccine advocate and planned on bullying me into doing things the “right way.” Each time I gave in to him I left the office terrified that I had made the wrong decision and upset that he had pushed me into something that my husband and I had put a lot of thought and research into.

Juxtaposed to the children’s health there was mine. I was being referred to specialist after specialist and no one could tell me what was wrong with me – well according to them it was all in my head. One day I was doing some research and I came across a specialty called environmental medicine. This sounded like EXACTLY what kind of doctor I needed to see! I searched for one in the area and found one. Yup, ONE. His name was John Sullivan. It wasn’t until I called his office that I realized he was the same doctor I had been referred to by the vaccine clinic. Interesting.

Well this is really about BabyM and BabyR so I will fast forward past all of my own health issues that “Doc” addressed and skip to the point. In November the twins saw Dr. Sullivan for the first time. He was the first doctor who listened, who didn’t think I was overreacting, who agreed that they were suffering from Leaky Gut (something most doctors don’t believe in – even though there are medical studies proving it exists – well they call it something much more sophisticated and swear that it is only a factor in – well who knows what kind of cases). Doc insisted that if we didn’t first heal the gut they would react to every food under the sun. And so the work began.

We have now worked with Dr. Sullivan for 10 months. He is the only doctor in babyM and BabyR’s lives who I trust and respect. And even when he doesn't automatically know the answer he's willing to go deeper. He never makes me feel like my research is useless and he's the one with all the answers. 

Today I am thanking God for leading us to Doc. As it turns out there was one other time that we were pointed to Dr. Sullivan – all three instances came from completely different sources. I love those little “coincidences.” What’s more God opened the door for the twins to receive a very expensive “alternative” treatment that no other doctors around even know about.

Today Dr. Sullivan and I checked in regarding this treatment.

We think it is working. We think it may be the reason that BabyM and BabyR’s condition has flared up now – since the treatment must be repeated every two months (and BabyM and BabyR had to skip their last treatment due to strep throat). There is no way for us to be sure just yet since they won’t have another treatment until after the colonoscopy/endoscopy. We have to watch and wait (my favorite thing).

I have still not heard from Mr. White Coat about BabyR’s scopes so the battle rages on. Even still, today I am grateful for Dr. Sullivan!


  1. What is the treatment Dr.Sullivan has your twins taking/doing? I'd be interested for my Sam. I do believe Leaky gut is a huge issue here....Increased intestinal permeability is the "medical" terminology for it -- same thing.

    I am LOVING your blog- these are my same frustrations...I'm still trying to get them to hear me. I have advocated for my little guy but now need to figure out how to advocate for myself so they hear me and help more. This is such a frustrating hard diagnosis but I do believe we are paving ground for future kids/parents.

  2. Joy, we really are paving the ground. They know so little about FPIES at this point. Isn't is so crazy that they cannot tell us why or even what to do? Thank God for AA formulas!

    I love the intestinal permiability and then there is dysbiosis which would explain the candida infections that modern medicine doesn't believe in! So often - so sick of it all!

    I can't wait to share the treatment with all you FPIES mommies. I am not sure yet how to do it. I see the Dr. on Thursday and I will talk to him to find out what states it is available in. It is called LDA. It is not FDA approved, but we do think it is working!