What’s up with that?

We’ve noticed something very strange going on in the Nantais’ household, lately Austin’s speech, language and communication has drastically improved.  We noticed at first when he got out of the hospital (December 17) but even since then we’ve seen more improvements.

Seems like Natalie, Genevieve and I are always raising our eyebrows or saying “Did you hear what I just heard?”

His speech is less cluttered we'll say, clearer, he isn't as soft spoken.  My mom actually noted how she can better understand him. He has also has been mimicking his sisters more often, just to be annoying to them, when it comes to the language, he does it at the appropriate time in the appropriate manner.

Another thing his comprehension and expressive language I believe has improved. The other morning I went to get a box of Kleenex from our cellar. From the basement landing I tossed the box and didn't make it to the kitchen floor.  I noted out loud that I was "Throwing like Austin". Austin was on the main floor and quickly responded “Hey! I heard that!” He completely understood that I was joking and making fun of him, and responded appropriately.

In the hospital, he was immediately placed on antibiotics, short-term, the original concern was his Hemolytic Anemia could have been brought on by a virus or infection. They later added a low dose of Folic Acid (1 mg a day – very small dose).  We were not discharged with this med but we just added Folic Acid (1 mg) back to his home medication schedule because it may help the production of new red blood cells.  The other med added was the steroid, Prednisone (because our numbers aren't holding up we've discontinued the tirade down, actually went up from 40 mgs to 50 mgs a day this week.) Doses in the hospital were much higher and at first IV driven.  This was all added to his normal med regime 1-10 mg of Abilify in the morning, 1-10 mg of Paxil in the evening.

Now typically steroids to not have a positive effect on those with fragile X (and/or autism), typically more agitation, more negative behavior is exhibited, so I’m not really thinking it’s the steroids but at this point I don’t know.

Last night we had a problem with the kitchen sink’s hose, it wouldn’t turn off.  So to avoid being sprayed with water if I turned on the kitchen sink I pulled the hose out so the nozzle was facing the drain.  Later Austin walked into the kitchen and said “Wow, that’s not right, I’ll fix that.” and walked over and put the hose back in its regular position.  Natalie and I just looked at each other with raised eyebrows, as I mouthed to her “Did you hear that? Did you see what he just did?”

Now, over the years, there has been research on the use of Folic Acid for those with fragile X syndrome, from ages one to 54, and the dosing was much higher ((minimum dose was 10 mgs, this was the most common dose, highest dose was 250 mgs) than what Austin is taking, just 1 mg a day. Most research based results I’ve witnessed on Folic Acid is inconclusive – keep in mind study population is relatively small which can impact results. This very small dose Austin is taking might be having a very positive impact.  

Some may wonder, is she just seeing things or questioning how such a small dose can make such a difference, but one must keep in mind I am the “Austin expert”. For Austin, if a med or treatment really works I will typically see the results immediately, in things I can measure against his “norm”. This was very true when we were in the initial double-blind STX209 study, after just a couple of doses I witnessed what I call “Wow Factors” – something that Austin does that makes me step back and say “Wow – that’s amazing”.  With everything that is going on I am seeing “Wow Factors”.

In addition, I’ve always known a little exercise can be calming for Austin, just raising his heart rate through a walk (fast pace for him) is calming for him.  Austin’s heart rate through this ordeal has quite often been elevated.  Through our treatment on Thursday it was typically above 100, as high as 131, and averaging out around 115. They actually have a medical term for this “Tachycardia” for when a resting heart rate is above 100.  When we were discharged from the hospital I discovered this, it was listed in his “Ongoing Medical Issues”. For the most part we’ve had no behavior issues, if he has gotten mad or upset over something it’s been rare and not intense as behavior episodes in the past.

So who knows what is really going on, is it just one thing or a combination of many including his environment (no school, home environment typically never causes anxiety or hyperarousal, and yes he’s getting a lot of one-on-one attention from all of us).  Bottom line I’m not complaining, I’d just like to figure this out, and curious minds would like to know.