Saturday, January 14, 2012

The Nutritionist

I've wanted to see a nutritionist for awhile. I thought about going to the nutritionist associated with our GI practice but I heard that she was fond of adding powdered mixes to food. That's not for us. I asked around and googled for a local nutritionist who had what I wanted: real credentials, experience with pediatric patients with feeding issues, and someone who was truly knowledgeable of SCD/GAPS  - i.e. someone who believes in healing and not just managing symptoms. That's a tall order.

While in the midst of my casual search, a fellow Kabuki/GAPS mom mentioned that her nutritionist was really great and knowledgeable and had helped quite a bit. While not local to me, she suggested that maybe the nutritionist would be willing to do a Skype/email consultation.

Now here's the crazy part: when I say "not local to me" I mean that our nutritionist lives in.... Australia. Yes, I live in one of the largest cities in the US but I'm consulting with someone on the other side of the world! It's really not an issue at all, except that I have to convert ounces to grams. And I will just cross my fingers that none of our doctors ever ask which nutritionist we are using...

Anyway, we met a week ago via Skype. I didn't tell her any of my theories about Juliana; I just laid out the facts. I told her that I was concerned that Juliana still had eczema after several weeks of being only on lamb-liver formula. (Eczema is a leaky gut symptom, so it's not something I can overlook in our process to heal J's gut). At first I had thought that the eczema was a detox symptom, but as it persisted this began to seem less and less likely. She agreed with me that it had been too long and that it was reaction, not detox. She suggested that I pull the whey and the lactose from the formula (something that I had actually begun doing just a day prior). To replace the missing carbs, I would instead increase Juliana's squash consumption and I could also add in stewed apples.

And remember how in my last post I said that no one had pinpointed Juliana's antibiotics as the major issue with her digestion? Well the nutritionist earned major brownie points by doing just that. She summed up Juliana's nutritional goals as "more acid (digestive juices) and more bugs (good bacteria that aid in digestion)."

I would start several new things immediately. I would slowly begin increasing her sauerkraut juice intake, working her up to a dose given four times a day. Sauerkraut is full of digestive enzymes, probiotic bacteria, vitamins and minerals. I would also begin soaking the liver in lemon juice. The acid helps break down protein (denaturation). And I would add acerola powder into her formula mixture, with the hope that the extra vitamin C would boost her immune system and help resolve the eczema. In the next few weeks we will try a chicken-liver formula and see if J does any better with that.

In a few weeks or so we hope to see some improvement and at that time we'll try 24-hour yogurt, which is easier to digest than straight raw milk or kefir (both of which we've tried in the past).

It has been really quite a relief to come up with a plan. Over the past few months I've realized that Juliana's case is too complex to handle on my own. Our medical team plays an important role in her care but they aren't knowledgeable about nutrition (fact, not just my opinion!). I am building my own knowledge from scratch and while I know many others walking the same journey, it's just not quite enough. Time is of the essence here and I need some serious expertise and guidance.

In just the past week, we've been getting somewhere. Juliana's eczema isn't completely gone but it's looking much better. Check it out!

Shortly before we began our new plan: ("Please help me get rid of this eczema!!")

And yesterday, only about five days in:

Previously the eczema would ebb and flow in its severity, but I've never seen it stay this clear for so long. So I am very optimistic that we are on the right path.


  1. Was really pleased to read this update. Great to hear you've got a plan that seems to be working :)Will look forward to hearing how Juliana progresses.

    BTW - we saw our genetecist the other day and he was literally beaming and chuckling when he saw Sophie - he said he just couldn't believe how well she was doing, and to keep doing whatever we are doing. Who knows how much is diet related, how much is genetic good luck, or related to other interventions etc but I know we'll be staying on the nutritional medecine pathway. Our gastro-enterologist (who treats 3 otehr Kabuki Kids) also saw the meal plan I had put together for SOphie based on consults with J, my personal experiences with Sophie and other reading and said "whoever put this plan toegther obviously knows what they are doing". It's great to have a "traditional" doctor who recognises the importance of nutrition - it is so rare that nutrition is considered properly - even gastros are usually keen to do pharamceutical interventions, surgical inteventions or promote canned formulas rather than considering whether changes in food could help a particular patient. Don't get me wrong - I know that surgery, pharmaceuticals etc are critical in some instances - but these approaches shoudln't necessarily be the first line of attack for ALL patients.
    It's a crazy world!

  2. was thinking of this post again this morning. That darn eczema is so hard to figure out- and determining the detox versus pushing too far and it being a reaction...such a hard determination. So glad you have figured it out and that you have these things to move forward with. The acerola powder is something I am hoping to use with Ellie to help with the detox.

    Keep up the good work mama! :)

  3. Kathy - you've been a huge help! I am inspired by you and Sophie. :)

    Nichole - there are a couple of Vitamin C options beyond the acerola. You probably already know but just want to mention in case you have trouble sourcing a good one.