Monday, March 8, 2010

Yo yo

I am working on a lengthy post to explain where we're at with the food/rash/general health issue. The short version is that Lily tested positive for H. pylori in her stool as well as a host of malabsorption issues. They kind of exist on a continuum and she runs the gamut. The good news is that everything seems to be related i.e. what on the surface looks overwhelming and depressing is really just one big issue manifest in many ways. The bad news is the doctor we'd been working with, albeit briefly, was not very experienced and has a less than stellar bedside manner. We have an appointment with our family doctor to go over the test results, so I'm hopeful that we will be back on track shortly.

One of the manifestations of essentially her systemic digestive failure is an intolerance to oxalates. Oxalates are naturally occurring food chemicals that most people naturally break down and excrete. Some people, especially those with compromised digestive systems, cannot easily break them down and the accumulate in the body causing kidney stones, rashes, headaches, mood issues, and of course, digestive upset. We are currently on a Low Oxalate Diet (LOD) to help her body flush out or "dump" the accumulated oxalates.

We were trying to start treating the H. pylori and naturally, at that. The mainstream protocol is to give three or four antibiotics plus antacids for two weeks. The consensus is that it is a very harsh treatment, plus we don't need to add antibiotic therapy to an already fragile gut. It is important to us to treat the H. pylori because it can lead to many dangerous health complications - ulcers, low stomach acid, low B12, cancer. Some research I've been doing suggests that if we can get rid of the H. pylori, the rest of her digestive tract will start to heal.

So, we were looking at other things such as sulfurous veggies, thyme tea and mastic gum. The sulfur seemed a bust, because we couldn't tolerate raw garlic in mass quantities on everything. The thyme tea Lily just won't drink, plus at that concentration, I'm not sure of the oxalate levels. The mastic gum turns out to come from a shrub in the cashew/pistachio family, a family to which I am particularly sensitive, and a family that happens to be super high in oxalates. We had given Lily & I this supplement for four days. So I basically just bombed my child with extremely high oxalates for four days. She is a cranky, yelling, whiny mess and her rash is super flared, open & itchy.

Oh, and when she's got too much oxalates she is HUNGRY constantly and bottomlessly.

My point? She woke up yelling at 7:30 and has been a Crabby McCrabster for the last 3.5 hours solid. And I'm about to lose my ever-loving mind. I can only deal with so much whining and yelling (and threatening) without pause. Mama needed to vent.


  1. Oh hugs, mama. We've been having a hell of a weekend here too. McCrabsters all around. :(

  2. We're listening Nessa, and walking beside you every step of the way...

  3. Hugs Nessa - I so hear you. We treated yeast with garlic, oil of oregano, and GSE - all high in sals/phenols, which DS is sensitive to. Not fun.

    So have you looked at the vitamin K group at all? Total opposite of the LOD (and I gather in the forum they don't get along, sigh), but maybe some of what they do would be helpful for you with the oxalates. Sorry, no ideas on the h. pylori, besides taking probiotics.

  4. I have looked at the Vit K group, but not as extensively as the LOD. It does seem that there are opposing view points. But that can be good, right? It makes me have to apply critical thinking and read studies and whatnot. :) I plan to do some reading/analyzing tonight and see where that leads us.


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