Getting Past the Pyroles

We’ve been to several DAN! Doctors and I always swear that I’ll commit myself  100% to what they tell me.  And I really do try.  We’ve done the Gluten-free casein- free diet, the specific carbohydrate diet, the eat liquids and solid at alternating intervals timed according to your circadian rhythm diet (yes, I’m serious)   I hold Naomi down while we’re getting another round of the same blood tests and she is screaming “Bye-Bye Bloooooood!” with a bloodcurdling panic that leaves me guilt ridden several hours later.  I buy the 100 pack of self-adhesive urine catchers and when I am finally successful getting a sample,  I transfer it to a test vial in the dark.  I’ve tried every possible way of hiding every supplement in her food.   A substantial number of nutrients have been poured down the sink or thrown away after they have sat for several hours in a drink or a smoothie or a meal.  I’ve tried putting the nutrients in syringe and forcing them into her but I don’t know how it can be successfully done without risking serious injury to one of us. We have driven Naomi on 4 hour round trips, every weekend to take her to a swallowing therapist.  When I first called the therapist, she told me that she has been able to get every child she worked with to swallow supplements after 10-12 sessions.  Now she says “every child except for 1 little girl.”  We’re on session 18.  We make the trip.  Progress has been slow but it is happening and we’re not giving up.

With all this work, it doesn’t seem that we’ve really gotten anywhere.   Of course, the swallowing barrier has held us back, but apart from that, we keep feeling like it’s groundhog day.  The same standard blood tests and urine tests are done again and again.  We take the time off school or work, travel to see the doctor, fork out a significant amount of money and we’re back to step one again.   It’s the pyroles,” we’re consistently told.  Now, this wouldn’t be such an unsatisfactory conclusion if at least one of the 5 tests we’ve had done for pyroles came back positive.  But they never have.  The results keep coming back negative.  “It’s a false negative,”  the doctors always say.   I haven’t yet figured out a way to ask “Then why keep doing the test, if no matter what the results are you respond as if they are positive?”  Doctors’ egos can be delicate and I doubt there is an answer to this that would satisfy me, so I haven’t asked it yet.

I have asked “How do you know?” The answer is a standard “It’s indicated in her behavior.”

 I’ve done the standard Google research on pyroles or Pyroluria as it is often referred to, and yes, some of the mood and behavior characteristics match Naomi.  Other characteristics associated with Pyroluria don’t match her at all.  I am aware that not all symptoms necessarily match with the textbook description, but with 5 negative tests it hardly seems like a slam dunk.   Is every case of mood swings, sensory processing issues,  outbursts, poor memory and sleep disturbance due to pyroles?  Couldn’t there be something else to look for?

The supplement for Pyroles  is B6 and zinc in relatively high doses

Now if you have never tasted vitamin B6, I’ll save you the trouble and explain that it’s pretty nasty.  Not bitter, maybe not as bad as wormwood, but it’s a sharp strong, sour taste.  It’s a little like taking straight unsweetened lemon juice in a powdered from only stronger and less pleasant.  Try hiding that in any food or convincing a kid who can’t swallow capsules to willingly take it! (Yes, I’ve tried adding sugar or honey and adding it to lemonade.  No success!)     Zinc is slightly better, but it has a metallic taste and it’s pretty hard to hide in large doses too.

I’ve explained all this to the DAN! Doctors and they say “Yes, I know it’s hard.”  You can imagine how helpful I find that.

The last doctor I saw gave me a prescription for P5P transdermal cream, the biologically active form of B6, and it made her go completely nuts.  All of the negative characteristics associated with Pyroles went full force when I gave Naomi P5P.  I know that things may get worse before they get better, but this was out of control.  We couldn’t live this way. “Give her as much as you can,” the doctor would say.  No amount was small enough.

So, since the standard testing indicates that everything is more or less within the limits of normal, I just want to get past the pyroles and move on to something that kind of stands out.  I’m wondering if we can test for parasites, lyme disease, neurotransmitters, hormones, west Nile virus, anti-brain antibodies or mitochondrial dysfunction.  It’s really hard for me to put the time, money and energy behind this when there’s really no objective testing that says BINGO!  Yes, I realize that there is almost never a single thing that answers all the autism questions.  I know that.  I’m just looking for something particularly significant.  Nothing so far has indicated particular significance; all the efforts we have made haven’t really shown us results.

After our last appointment that resulted in a retesting of everything we’ve already done and another pronouncement of pyroles,  I decided to call the doctor’s office.  “I just spent almost $400, a lot of travel time and a very difficult day with my kid on an appointment where we didn’t find or test for anything new.  I really don’t want that to happen again.  When I come in next time can we at least do some new testing?”

“It depends on her progress.  We’ll take her height and weight and you can talk to the doctor.  At that time he’ll assess if new testing is necessary or some should be repeated.”

Naomi’s height and weight have never been a point of concern. “Talking to the doctor,” was what I had already done at the last appointment.  I get it.  Pay first.  Ask questions later.  It sounds like we won’t be getting past the pyroles any time soon!