Rory’s May Apraxia Update

By on May 5, 2018 in Apraxia | 2 comments

It has been the best of times and the worst of times for Rory for the past few months.  Thankfully not in that order.  I’d say we’ve had the BEST few weeks we’ve ever had in a row recently, and I’m attributing that success to Rifaximin.

Rory has been on the Nemechek Protocol since last September, a biomedical protocol I wholeheartedly believe in that helps heal the gut and the brain by reducing inflammation using inulin fiber, fish oil and extra virgin olive oil.  We saw gains for the first few months she was on it, and then she plateaued.  It was kind of a major bummer.

During that plateau, we had been working on getting more information, so we independently had a micronutrient profile (everything was good except a slight CoQ10 deficiency), full IgE and IgG food allergy testing (allergic to basically EVERYTHING, but especially gluten, soy, eggs, dairy, pork, beef, blueberries, and intolerances of varying degrees to SO much more), Vitamin D test (not deficient but not optimal so we are supplementing this to improve her immune system) and MTHFR test (heterozygous A1298C) , and all kinds of normal bloodwork and an x-ray (that showed…constipation???  What the???) done via the world’s worst GI doctor’s appointment. (Seriously–AWFUL!! She declared Rory not only underweight, but malnourished, wouldn’t even look at the food allergy testing we’d done because it was not FDA approved, and I wondered when she left the room if she was going to call CPS on me.  And I’m not the only one this doctor has done this to, as I heard similar stories from two other friends.  Needless to say we have not been back.)

The bloodwork came back a bit concerning as there were quite a few things out of whack and when I Dr. Googled the results, most of the out-of-whack items implied that SIBO could be the culprit, which stands for Small Intestine Bacterial Overgrowth and is a major part of the Nemechek Protocol.  So since we had been on the Nemechek Protocol for 7 months at this point using inulin and were still having major poop issues, I set my mind on getting Rory a prescription for Rifaximin, a very targeted antibiotic that specifically targets bacterial overgrowth in the small intestine (the “fish” in the Nemechek analogy, while leaving the “birds” that belong there alone), and the “gut” component of the Nemechek Protocol that Dr. Nemechek recommends for older kids and adults for whom the inulin isn’t cutting it.

So after considering flying our butts out to Arizona to see Dr. Nemechek himself, we finally made an appointment to see our local MAPS doctor. I’d heard about him years ago from a good friend who took her autistic son there and loved him to pieces, but since he doesn’t take insurance and his office is an hour from our house, we had put off a visit.  When I realized the doctor listed for our area on the MAPS site was that same doctor, it sealed the deal!  I told them that I was concerned about Rory’s bloodwork and they were able to get us in quickly.  (And our awesome healthshare co-op actually covered it, woo hoo!)

The first thing our MAPS doctor told me was that he first and foremost listens to the parents who visit him, that we know our children better than anyone else and he has learned more from the parents than anything else.  If we have a gut feeling about our children, he is going to listen to it.  After that awful GI doctor appointment, this nearly had me in tears!  Considering that every other doctor we’ve seen has given me “that look” like I have an alien on my head (OK, I get it. I tend to vomit a lot of information at them at a rapid pace a la Lorelai Gilmore), it was so refreshing to have one so open to listening.  I had prepared a complete timeline of Rory’s medical history and put together a list of all of the reasons why I thought he gut issues were attributed to SIBO in my effort to get the Rifaximin prescription, but after we told him that we were on the Nemechek Protocol (which he had actually HEARD OF), HE was the one to suggest we try the Rifaximin.  He also wanted to do some other blood work and other tests after we were done with the Rifaximin, but he gave us that coveted prescription.  He picked up the phone and called Dr. Nemechek’s office to discuss the dosage, which totally cracked us up.  They said it was in the book, which of course I had highlighted and ready to show him.  But he wanted to start more conservatively with a lower dose of 300mg twice a day for 10 days since she is so small.  (I should pause here to say that it is NOT NORMAL to give a 3 year old Rifaximin when you are on the Nemechek Protocol, and most of them do beautifully with just the inulin, so if you are reading this and haven’t tried inulin first, TRY IT!)  But he gave us a large enough prescription to also try the Nemechek dose of 550mg  afterward if we needed it.  And if it didn’t work, we would test for yeast and clostridia afterward.

Now Rifaximin is an awesome drug, but it is also an EXPENSIVE drug, costing upwards of $2,000 for a standard course.  We suggested to the doctor that we order it from a Canadian pharmacy and he agreed that would be a good solution, so we found a certified one online and ordered (100) 200mg pills, which they in turn ordered from India.  We seriously started to wonder if they were coming from India to Florida via canoe, but we finally got them and did our first course of Rifaximin.  I’d planned to have them compounded into liquid, but apparently you can’t do that unless you buy the prescription directly from a compounding pharmacy.  So I got a pill crusher, smooshed them up and mixed them into either So Delicious Key Lime Coconut Yogurt (excellent for hiding all kinds of stuff) or Pear Mango sauce.  I could certainly taste the pills (yuck!) but they didn’t phase Rory in the least and she never gave me any gripes about taking them for the whole 20 days (10 for the 1st course, 10 for the second course) she was on them.

After the first course, she had her first solid poops in…oh, pretty much ever.  I was so excited!!  But the “Rory normal” poops came back just a few days later.  We also entered into some of the worst behavior she’d ever had at this point, like to the point where I was in tears at least once a day thinking we were never going to survive!  I’m wondering if it was the “awakening” period Dr. Nemechek refers to when things start to resolve, as he proposes that when the propionic acid gets “turned off” it reveals the full extent of the developmental delay.  So we waited a few days and then started up our second round of Rifaximin.  After the first day, she had a solid poop!  We did have a bit of a blip on the radar halfway through when we went to PDQ for lunch in Orlando and ignored the trace amounts of gluten and soy in the meal she ate (it was the first time we’d slipped in a long time), but by the end of her 10 days, her poop was consistently normal.

Her behavior starting on day 8 of the Rifaximin has drastically improved.  She has been sweeter and more loving, giving us lots of hugs and kisses.  We survived a family trip to the aquarium last weekend without any tears from anyone, which is pretty huge.  (We will see how our trip to Disney’s Animal Kingdom goes on Tuesday.)

Her “chattiness” has improved so much and her intent to communicate is most definitely there.  Her verbal approximations have consistently been limited to CVCV repetitions like mama, dada, bubba, or more specifically muh-muh for Minnie and monkey.  This week Minnie went from muh-muh to Meh-nie and monkey was just monkey.  I went from mama to Mommy. Can I tell you how beautiful it is to hear Mommy, even if it is usually in the “Mommy, Mommy, Mommy, Mommy” at the top of her lungs fashion.

She has been practicing wearing her ballet costume in her occupational therapy sessions (because she has major sensory issues and completely freaked out the first time I put it on her), and she’s not only worn it for the whole session lately and had dance parties with her therapists and another little girl at therapy, she’s actually requested it.  And while she has never worn the cute purple leotard or ballet slippers I bought her when she started ballet in September, she wore them in class today (with a Minnie Mouse shirt over it, but hey, baby steps!).

It hasn’t been perfect, don’t get me wrong.  She still scratches and hits her little brother Owen far too often, and there are times at least a few times a day that her behavior makes us all crazy, but I feel like it’s been closer to typical “threenager” behavior–because let’s be honest, most 3 year olds are kind of a-holes, right?–than the extremely difficult Rory behavior we are used to.

The Nemechek Protocol doesn’t claim to be an instant cure, it’s more like watching hair grow, where you don’t notice it growing day by day but at the end of a few months you need a hair cut, and I feel like maybe, just maybe, we are finally getting into that hair-growing groove.