Friday, September 27, 2013

Quick update!

Well, there's been one great development since the last phone appt in July, but that's about all since we have only just now began on the new meds! Grrr. Alaska is one of 7 states that does not allow out-of-state compounding pharmacies to ship into AK. Since some of the meds had to be refrigerated, we were going to have to overnight them to TX and then have willing family re-freeze the ice packs and overnight it to AK. We were looking at $100+ a month in shipping! So, I've spent the past months calling pharmacies all over the state. I would get some lab-tech who would say "Sure, we should be able to do that," but when the Dr. would call in the script, the pharmacist would deny it. Many of the prescriptions are light sensitive and have to be mixed in special labs which we apparently do not have up here. sigh. Add in a 4 hour time difference between AK and the Dr's office in NY, and it made for a very frustrating time.

In one case, I finally gave in, and we went with B-12 (methyl, not cyano) nasal spray instead of the subcutaneous injections. The injections are much more preferable with great results, but we just could not get them filled and sent easily here.  The local compounding pharmacy was willing to order the ingredients for the nasal spray and begin making that here for him, so we took them up on it. He started it last week and has to be on it for a month before we can begin the Namenda (the alzheimers' med).

We also have three more meds that are finally on the way, but the two I'm really excited about are the Namenda and the Mutaflor. When they ran the labs on my boy, they found he had none of the good E.coli in his system and high levels of the bad stuff. So, the Mutaflor is a pure, healthy E.Coli strain to replenish his gut. Also, when I left off last time, I was off to research the Namenda. What I found was so encouraging! They are having huge success with it for  ASD kids-especially where the social skill development is involved. Many parents say that their kids suddenly started to 'click' and 'get it'. They were suddenly able to make friends and navigate social circles. That makes so much sense if it is truly working to reduce the inflammation in those areas of the brain!  It's also a med that's fairly easy to start or stop, meaning there are little side effects.  The biggest problem with it seems to be our good ol' politicized insurance system. Since this is still considered off-label use for ASD, many companies won't cover it. Thankfully ours did since it was going to be $300 for that one med on top of all of the other meds and supplements! Thank you Lord!!

The major development for now is that his headaches are mostly GONE!! Occasionally he'll tell me that they are at a "Level 1" meaning it's a slight headache (versus the "Level 7/8" they used to be at daily!), but it's usually a "Level 0"!   I'm so excited for him! "Chronic Daily Headache Syndrome" my foot! I laugh in the face of it. Muahahahaha

Also, he's been soaking daily in epsom salts (magnesium sulfates) and baking soda, and using a cream to replenish his sulfates so that he can process phenols and salicylates. Thankfully, that seems to be working well. His ruddiness is gone, and his skin just looks healthier. We've been weaning off the daily baths and just using the 1/8 tsp cream and it seems to be working well. If he does have a 'flare up' we just know we may have to use the baths as a treatment. Hopefully once we get his gut balanced and the yeast gone, these sensitivites, along with all of the food allergies, will be healed.

Okay, I'm off to start the day. I pray you each have a wonderful, healthy weekend ahead!

1 comment:

  1. I still say he is the luckiest boy to have you as his mama.