DAN Doctor Appointment - New Interventions!

I had a one hour phone appointment with the D.A.N. doctor this morning to discuss Dylan's progress and next steps.  To recap:

1) Dylan has been on a GFCF soy free organic diet for the past 1 1/2 years.  In addition, he has been on multivitamins, enzymes, probiotics and fish oils for the same amount of time.  With these changes, we saw smiles return and an increased interest in his surroundings.
2) Our first DAN doctor appointment was a few months ago, where we were given a test kit for urine and stool to send away to a special lab.  Once results were back, the doc prescribed Bactrim then Flagyl then Fluconizole.  During the last week of his Fluconizole treatment, we saw tremendous language development.  He had been functionally nonverbal up to this point and now he has nearly 40 regular words and another 40 he is saying occasionally.

Here's what we're doing next per DAN doc:
1) Change supplement schedule so that Calcium is broken up into two 500mg doses.  Also change so that Zinc is not given with Calcium, as the doc says, "they are not friends".  In addition, I am to give all fat soluble vitamins and supplements with food - so we will be adding a third round of medication into our schedule right after dinner.  Oh, joy.

2) Tweak other supplements to find the source of his new hyperactivity.  I have made a spreadsheet with numbers 1-31 at top and physical/behavioral characteristics listed on the side.  On a scale of 1-10 I am to record such things as eye contact, hyperactivity, stimming, stools, sleep, focus, distention, posturing, etc.  as I remove one supplement every three days in the following order:
-DMG
-P5P
-B6
-Vitamin C
-Vitamin E

I am to discontinue this protocol when the source of hyperactivity is found or when I have removed all five.  Then reintroduce them every three days in the reverse order.  I am to record any diminishing of language or learning during this time.  Sometimes when the hyperactivity (or any negative effect) is removed, along goes some good stuff as well.  So the goal is to find a balance - remove the culprit(s) or decrease dosage unless doing so would lose him some good effects.  If no balance is achievable, we just deal with the hyperactivity and move on.

3)  Add Folic Acid in the 5-MTHF form (5-methyltetrahydrofolate)
This is the most absorbable form.  My doc recommends purchasing from Thorne as 5-MTHF or from Metagenics as FolaPro.

4) Begin B12 injections every three days.  Watch for pink urine as an indication of injecting too deeply or of B12 being absorbed too quickly.  Possible side effect of hyperactivity.

5) Once #1-4 have been completed we will be doing a Challenge Test to begin chelation therapy.  We begin with a CBC, CMP and RBC Elements test to check liver function, WBC count and mineral levels.  Doc wants to be sure Dylan's body is equipped to handle chelation.  Once those results are in, we will do a 6-hr urine test.  For most kids, this test shows very little heavy metal excretion - which means that either they don't have any, or that they are unable to get rid of what they do have.  The next day we give a chelator suppository and do another 6-hr urine test.  If chelator is effective, we will see a significant increase in heavy metal excretion.  If it shows little or no difference, we will redo this protocol using a different chelator.  If the second test shows little or no excretion, we will proceed with more testing to determine if heavy metal toxicity is even an issue.

I am very excited about the prospect of starting B12 and chelation as I have read so many success stories with these two interventions!  As always, please pray for Dylan.