Tuesday, July 23, 2013

One Month Update!

Wow! What a month it's been; loads of summer sunshine and healing for my boy. Who could ask for more??

Okay, to start off with, N has made vast improvement on the yeast infection/gut dysbiosis front. He had  'migraine' type symptoms for exactly one week; headache, nausea, light sensitive, weak. To make it worse, it was over 4th of July! Poor baby.  I found via on-line research (and the Dr. confirmed on the phone consult just now) that this is totally typical of the yeast-die off.  On day 8, it was like a switch turned off. The migraine symptoms stopped, and since then his headaches have been barely noticable. He said they feel like they did last fall before we started the NIDS diet. (That was back when he didn't have body awareness and was considered hypo-sensitive to touch and feeling.) Hooray!  Also, to note that all of this die-off happened just by removing all sugars from his diet and from the high powered probiotics that the Dr. put him on. This was before we even started the Nystatin prescription anti-fungal! Now he's been on the Nystatin for 2 weeks as well, and Nathan said he feels like we "...just brought in the tanks to annihilate the yeast." Spoken like a true boy. haha

Another development is that he also said he's seeing better!? He told me that he used to have times when his eyes would get foggy and blurry, but that's not happening any more and his vision is clearer. I asked him why he never told me, and he said he just thought that was normal! Poor guy! Even if we don't make any more 'progress' in healing him, I think that NY trip was worth it just for the headaches and the vision!!

Thankfully, I just got off the phone for our 1 month follow-up appt. with Dr. Compain (Dr. Bock's associate). We went over the myriad of labs that were  collected and the various tweaks we need to make to his meds. Without going into to much private detail, I will gladly share that his gut-flora and bacteria levels were low for the good and high for the bad. Yep, his digestive tract is a mess. Thankfully, we should be able to heal him w/ the probiotics and some anti-microbial prescriptions to kill the bad bac.  His minerals and thyroid tested fine which puzzled me since I thought he sounded so typical of thyroid dysfunction w/ the low muscle tone and fatigue. I was starting to feel confused, but this seems to have been answered by his creatine levels being really low. The symptoms of that? Low muscle tone and fatigue!  The supplements that we've already started should help tremendously with that, so we'll see.

Um, what else? Let's see. Some of his Vitamin levels were low or borderline. His glutathione (which is the body's main anti-oxidant) was low. This is very common w/ a lot of the neuro-spectrum kids.  We will start a prescription cream for that since taking it orally can feed yeast. (To quote my friend "Yeast is evil.")  Also, his sulfate level tested low. Sulfates help the body metabolize (drum roll please) phenols and salicylates!!! Remember how I shared that at his physical exam w/ Dr. Bock, he had told us that he saw evidence of that and how we are supposed to be limiting salicylates? Yep, he was spot-on. While I'm not surprised, it's nice to have it confirmed empirically.

I think that's the bulk of the findings so far. We are still working on getting one of his prescriptions filled since Alaska has special rules for out-of-state compounding pharmacies mailing in. We are still working on finding a place in-state that can fill one that should be an injection. If we can't do that, then the 2nd best option is a nasal spray, but the sub-cutaneous injection is definitely preferable.

One other thing that the Dr. mentioned is introducing Namenda in a month or so (after he's been at the full dose of his other scripts for about a month). It's a medicine that is mainly used for alzheimers patients because it reduces brain inflammation. That would make sense as to why they've been having great results with it for spectrum kids the past few years! Since it's going to be used for 'off-label use', I have to sign a consent before he can order it. So, now I'm off to go research and pray about this new option.  Thank you, Lord (and Al Gore) for the internet! ;)

Hillary and N


  1. I am finding all your research, findings and most of all
    N fixes fascinating. On you rspecial meds you need made up, try Bernies Pharmacy on Lake Otis. I used them for special meds he made up and gladly mailed to me in cdv years ago. Good luck Hillary. N is lucky to have you as his mom.

  2. Thanks Julie! Someone else just recommended Bernie's as well. I'm going to go give them a call! Here's hopin'...