Trying to find a doctor who gets it

Day 35

First the good news: fish is totally OK! Yippee! We had trout again for breakfast this morning and it was delicious.

On to other things...

I've been putting a lot of time and effort over the past couple weeks to find a doctor (Western or naturopathic) who can help guide us through this process. To say it's been a frustrating experience would be a major understatement.

First, I contacted Ellie's pediatrician and told her I was interested in seeing a developmental pediatrician at the same practice. I explained that since developmental peds work with autism - and GAPS is used to treat autism - I thought that would be my best chance of finding a doc who understood GAPS and was covered by our insurance. What a waste of time. Our pediatrician questioned me about Ellie's development. I told her it was fine. She checked with the developmental ped - who had never heard of GAPS and said seeing that specialist didn't make sense.


Our pediatrician referred me back to the pediatric gastroenterologists who we've already seen and I've already fired. The last time I was in, the GI essentially told me to stop breastfeeding and start feeding Ellie a high-calorie prescription-only formula. I was so desperate I actually gave her some, and it made her incredibly sick. When I told the GI this, she dismissed me and said that was impossible. I told her that she was done being my child's doctor. So we're not going back down that path.

Another avenue I explored was Dr. Thomas Cowan - a naturopath in San Francisco. (Yes, I seriously considered flying Ellie to San Francisco to see a doctor.) Dr. Natasha Campbell-McBride, who wrote the GAPS book, recommends Dr. Cowan. His practice very hard to reach by phone and he seems to prefer to do everything online. So I sent him an email explaining our situation. The responses I received in our exchange were very brief and not helpful and the last message essentially said, "I'm a very busy man, and likely won't be able to offer the level of care you need." Frustrating!!!

Today I had an informational 15-minute consultation with a local naturopath I found on the Defeat Autism Now list (again, thinking someone who specializes in treating autism would be familiar with GAPS). She and I immediately connected and she totally "got" me and what we're going through.

"I just need someone in the medical field to be monitoring us as we go through this process, because I'm concerned about how limited our diet is and I am worried about the fact that I've lost more weight than I'm comfortable with," I told her. "And her pediatrician and GI and allergist have never even heard of GAPS let alone the bacterial overgrowth I have a test proving she has!"

The naturopath was awesome and very encouraging, but confusing too. She said she wasn't sure if we needed to be on a diet as restrictive as GAPS based on our symptoms and suggested looking into The Body Ecology Diet. I told Ian after the call if I have to learn and implement one more diet I am going to blow my brains out. (Sorry - that's really graphic - but it's what I said.) She also said she'd consider putting Ellie on antibiotics again to try to kill the klebsiella pneumoniae that we know is overgrown in her gut. The idea of antibiotics right now is also really confusing. Isn't the whole point of GAPS to kill this stuff? Why would I need to put her on antibiotics?

So in the end I feel like I've found someone I personally jibe with, but I don't totally understand her possible solutions. She told me to call a dietitian she really respects to get a second opinion. The question for the dietitian is: is this something that can by overcome by diet, or should we be considering medical intervention? So we'll see how that conversation goes. 

I now know why I've spent the last four-plus months implementing SCD and then GAPS without input from any doctors (besides regular weight checks at the pediatrician’s office). It is impossible to find someone within traditional medicine who understands a) what is wrong with Ellie or b) how to fix it. My hope is that we can find that help somewhere, hopefully soon.