NAC

The last couple of days of school and the first part of break I gave Ayden Jane NAC. Once upon a time I gave her pharmaNac which is a pill that fizzes in water like alkaselzer. It was a good thing for her and helped in a few areas including reducing the pws pause and a sort of studder she had when younger. The formula of the Nac was changed by the company and it upset AJ's tummy so we stopped. That was last spring...

After chatting with Dr. Miller we decided to give a capsule form of Nac a try. Others have used it with success - although most use it to help with skin picking. It sort of fell in the category of safe and maybe it would help her get over the afternoon lull a bit more smoothly.

What did we notice? I think there was a slight improvement in the fluidity of her words and the quickness of her verbal interactions. You know, a reduction in th pws pause in processing speed. That was the positive side. On the negative side Ayden Jane STUNK. I mean, shower in the morning stinky by lunchtime. I'm not talking a mild odor, I mean no one would want to sit near her sort of smelly. 

Additionally, she was hungry. By 10 in the morning she was already asking if it was lunchtime. In fact, every hour or so she was wanting to eat something. That can be typical with PWS but it is not typical for Ayden Jane. She gained a couple pounds during the week she was on it.

I stopped and within 48 the horrid smell and the hunger were both gone. It is so strange. I asked Dr. Miller if that was a side effect of the NAC and she had never heard of it happening. Well, I guess that's just my AJ. At least she never leaves us guessing as to whether something is effecting her in a positive or negative way.

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)

Pharma NAC

While at the conference we heard Dr. Miller talk about a supplement for low glutathione levels.  Yea, I have no clue what a glutathione level is either but apparently it is sort of important.  It is linked to obsessive/compulsive behaviors like hair pulling and skin picking in PWS.  I guess they have had some luck with it in helping to treat addictions as well.  Now, we are very happy that we do not deal with any of those things with Ayden Jane.

We also heard, however, that it is a supplement that is used in people with cystic fibrosis because it is somehow linked to inflammation of the airway.  It is also known to loosen and break up the gunk that resides in that tract.  All things that I would have paid dearly for last winter when Ayden Jane was such a mess. Because it helps immune function and respiratory system, it can break the cycle of repeated bacterial infection.  Again, where was this stuff last winter???

Ayden Jane just finished day 3.  So far I'd say I am hopeful.  When we returned from the conference Ayden Jane was a very gooey mess.  I am pretty sure that the cats at Mrs. J's were the culprits for clogging her all up, but her poor drainage ability was basically letting it all just sit there.  I'd say she has blown her nose successfully better than I ever remember since we started this stuff on day 1.  She is nearly silent when sleeping.  (Not that she snores a ton, but she definitely did when clogged up.)

I also think that there is an increase in her energy.  The first night she was up until 11 pm!!  Day 2 was marked by a long, involved wrestling session and the going-so-fast-she-kept-crashing-everything routine.  Day 3 she skipped a nap and kept energy going.  She is also choosing to more or less skip lunch!  The best part of that is she is doing so without the big lull in activity that has always come after being active a while and sort of running out of fuel.

Way too soon to say what part/if the Pharma NAC is responsible for the changes, but my gut says that it is, at the very least, reducing the inflammation in her sinuses and calming her immune system.  Sort of giving her a fighting chance of clearing things out.  In the process there may be a bit better respiration going on as it is just way easier to breathe!  I also think it is responsible for quieter sleep.  Even though AJ does not deal with it, I wonder if it would help with obstructive sleep apnea?  (google search shows a bit of hope it might)