Thursday, December 13, 2012

More on PharmaNAC

PharmaNAC has been wonderful for Ayden Jane in many ways.  I KNOW that our results are not typical.  That seems to be a recurring theme for AJ...

Here are the good results.  Clear upper respiratory system.  Ayden Jane did get a bit of a cold, like Mckenna, but it was cleared out in a couple of days.  No extended goo, no infection.  Nothing short of miraculous.

The big surprise, however, is that it is causing her brain and mouth to be much more connected.  Basically, AJ has great verbal skills, but when trying to express complex ideas or when a lot is going on around her or she is just surrounded by new people/places she struggles to get those ideas out.  It is not a true stutter, but that is generally what we call it.  Basically she repeats the first few words of the sentence a few times while her brain is working on the second part.  Then throw in some basic pauses and the end result is that it requires a LOT of patience from the listener and determination from Ayden Jane.   After about a week of taking the NAC, I realized that she hadn't "stuttered."  I am not really sure when it stopped because it was noticing something was NOT happening...  I asked Gary and he said he could not think of one time either...

It is like the thoughts in her head now just come flowing out with ease.  Here is an example over breakfast.  Just imagine that there is only a split second pause after each question where you cannot possibly get in an answer!

Was Santa born? If he was who are his parents? If he wasn't born does that mean he was made? Did God make Santa? Why did God make Santa? So we could get presents? How old is Santa? What about the elves? Did God make them or did Santa make them? How old are they? Do Santa and the elves ever die? If they die what will happen to Christmas? Can the elves talk? If they can talk, why does Fiddlesticks (our elf on the shelf) not talk to us? Is it that he can't or because Santa told him not to? Why doesn't Santa want him to talk to us? Is Santa afraid Fiddlesticks will accidentally tell us his secrets? You know, Santa lives at the North Pole. So do polar bears. How do polar bears keep warm when they swim in the cold ocean? That's just crazy! We have a bear cave at school. How many types of bears are there in the world? How come bears look so different but are all bears? ...

And it goes on forever....  It is amazing.

Now the down side (why does there always have to be a downside?).  PharmaNAC was tearing up her belly.  Ayden Jane did not complain, but you could see that her belly was bloated and, pardon the bathroom discussion, but her poop turned to pudding.  I thought that the side effect may diminish over time but it continued to gradually get worse and I was beginning to worry she was going to have problems at school.  I told her teacher of the problem and assured her that it was the result of something we were giving her to help her.  The teacher's response shocked me.  "Is that why she is so much quicker to answer and is able to transition so much easier now?"  Ummm.  I guess so!

Well, with no hope for improvement in sight I decided to try giving her PharmaNAC every other day.  The evening after skipping a dose we were at horses.  Ayden Jane was trying to retell a story and she just got so stuck.  It kept wanting to come out backwards and she kept repeating parts of sentences.  I was getting frustrated and then it hit me.  This was our normal just a few weeks ago!  I just couldn't go back!!!

Faced with the choice of torn up gut or dis fluency in speaking I had to find a different solution.  (By the way, the break took care of the gut)  Dr. Miller was concerned that if I opened the package and used half a tab that the other half may not be useful the next day.  I just was not up for throwing away half a dose a day.  This stuff is expensive!!  She gave me the mission of contacting the company.

Victory!!  The effervescent tab that they make is more stable than powders or powder in capsules.  It was suggested that I snap it in half and save the other 1/2 in the packaging and/or saran wrap.  Basically, they said that it may lose some of it's potency to oxidation but it should be minimal in 12-24 hours.

So, we are currently using 1/2 a tab daily and things are flowing at appropriate rates from both ends :)  (I just couldn't resist)

1 comment:

  1. Funny you mention this because i was just emailing with Cindy Szapacs and she was saying that her son was having GI problems from it. Dean was just on augmentin for 10 days, so I didn't know if his poo was from the PharmaNAC or that. Good to know to look out for it. And good to know about the stability of the tablet! I wouldn't mind using only 1/2 a day to save some $$ on it. :)