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.

Wednesday, January 11, 2012

Special-Needs Kids Eat Right

I recently read this book:

I really enjoyed it. For the purists out there - no, this is not a GAPS compliant guide. But it still has given me a few new ideas as to what might help Juliana. This book is geared towards kids with autism, but I think anyone with a leaky gut could benefit from it. I also think that anyone interested in preventing a leaky gut could learn from it.

In a section titled "The Reflux Kid" the author discusses "children who got off on the wrong foot from day one." (Hello, Juliana - never had even a second to get off on the right foot).
Typically there was a neonatal situation that meant bowel flora was never imprinted properly on the child's gut and immune system: a C-section delivery, early or repeated antibiotics in the first weeks... A merry-go-round of illnesses, growth problems, and developmental quirks or delays often ensue. The baby often cannot tolerate even breast milk and attempts at various formulas come next.
...Reflux begins early and persists... Medications that are meant to be used for a few weeks at most become long-term crutches... Candidiasis becomes an entrenched nightmare.
What to do: reboot bowel flora. It never got situated in the first place, and this set off the downward spiral of intolerance and sensitivities, allergy and reflux.
This section was a light bulb moment for me! I have always suspected that the antibiotics Juliana received (for sepsis) made a negative impression on her gut. She also had x-rays, ultrasound and CT scans - all of which can negatively impact bowel flora. It took her a couple of months to get over obvious signs of yeast in her mouth and in her diaper. But this was the first time anyone has suggested that antibiotics could be the major player in her gut issues. I am sure that Kabuki syndrome also plays a role here, as Kabuki kids tend to have GI issues (diarrhea, constipation, malabsorption...) Add in the antibiotics and you can see why this put Juliana in a bad spot.

Back to the book. The author proceeds to give recommendations on how to do this. I recommend this section of the book for anyone dealing with reflux and all that comes along with it. While the GAPS diet will get you to the same place more effectively, I appreciated the concise directions that are aimed at the pediatric patient. These instructions relate to giving rounds of antifungal medication, giving probiotics, weaning off of reflux meds, and using herbal support to help the child with digestion.

If you're not ready for GAPS, or if you're skeptical that diet makes a difference, if you want ideas on various nutritional tests or if you would like to know which supplements can help with which issues - this is your book.

After finishing the book I was really excited to meet with our new nutritionist - which we did last week! More on that next time.

Saturday, January 7, 2012

Probiotics Primer

Probiotics are the beneficial bacteria in the form of a nutritional supplement or fermented food, which can be taken in an attempt to replace or supplement damaged indigenous flora. Contrary to antibiotic meaning "against life"probiotic means "pro-life" or "for-life." - Gut and Psychology Syndrome
GAPS Probiotic recommendations:
  • as many different species of beneficial bacteria as possible
  • a mixture of strains from different groups of probiotic bacteria
  • at least 8 billion live bacterial cells per gram
  • each batch tested for strength and bacterial composition, with the results published
  • no fillers that would bother a person
Therapeutic doses based on age:

0-12 months of age = 1-2 billion of bacterial cells per day (1 capsule of BK)
1-2 years of age = 2-4 billion of bacterial cells per day (1-2 capsules of BK)
2-4 years of age = 4-8 billion of bacterial cells per day (2-4 capsules of BK)
4-10 years of age = 8-12 billion of bacterial cells per day (4-6 capsules of BK)
12-16 years of age = 12-15 billion of bacterial cells per day (6-8 capsules of BK)
Adults = 15-20 billion of bacterial cells per day (8-10 capsules of BK)

For minimal die-off and maximum progress, one must start with a fraction of the therapeutic dose. The author of GAPS Guide recommends taking 16 weeks to build to the full dose, but I've been able to move Juliana along faster than that. Dr. Natasha recommends increasing dosage once die-off symptoms subside.

Note that if you don't change your diet, then probiotics aren't going to do much for you. Per Dr. Natasha, if you carry on feeding your pathogens in the gut with sugar and processed carbohydrates then the probiotic will not have much chance of helping you.

All this to say that Juliana's new probiotic has arrived! Starting tomorrow she will receive her first dose of Bio-Kult.

Some other good probiotics I have heard of:
GutPro - good for those with a very sensitive/damaged gut. We used this for awhile.
Natren Life Start - this is WAPF's recommended probiotic for babies. We used it for awhile, but it's only one strain. Note that it is cultured on dairy.
BioGaia liquid L.Reuteri - cultured on breast milk. I haven't used it but have heard it's a good choice for young babies.

There are so many probiotic options - it seems that everyone has their favorite brand. Stick to the recommendations above and shop around. Or just go straight to Bio-Kult!