Speech Video 01/23/2013

Our last speech video was created on December 5.  At that time, we were at 24 words and 9 different isolated sounds - all made with little to no issues.  I encourage you to go back and watch that video before this one to really get a good idea of the changes.  December 5 Speech Video

I took my previous post and started to go through the words he was successful with at the last video when I made this.  The words at that time:  Ayden, Mommy, Daddy, Issac, Emma, sissy, car, cupcake, turtle, turkey, oink, gobble, quack, woof, moo, yeah!, bubble, bus, birds, fish, ball, apple, brother, eagle.  And the sounds:  /b/, /g/, /t/, /p/, /c/, /s/, /a/, /m/, /i/.  We barely made it through half the list and you'll see him slowly lose focus more and more as well as protest.

I didn't count today for an exact number, but we're back to about 5 words.  Maybe 10 with a lot of pressure.  The last video was taken right before we started noticing things getting worse in the double blind portion of the STX 209 trial.  Ayden became considerably worse over the course of the next six weeks while on the maintenance portion and into the titrating down portion of the trial.  His speech slowly regressed along with a lot of other gains.  I wish I would have done this before we started the open-label, because while this is bad it is still better than it was a week ago.  We are 5 days into the open-label where we know we are receiving the medication and are beginning to see a bit of improvement in his focus and speech.  I am hopeful as we get his dosing correct in the open label that we will begin to see these gains return and our next speech video will be much better.

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STX 209 - Update 3

I know this post is crazy overdue...but other things keep requiring my attention this holiday season.  Now that it's almost over and I have a few minutes to breath..(who am I kidding there?  I never have time to breathe!)

My last update was in mid-November, almost six weeks ago.  We have been on the "maintenance" portion of the trial for a while now.  This means we have been on a steady dose of whatever level of drug (or placebo) we were assigned to in the randomization.

Behaviorally..Ayden is doing okay.  It really depends on the day.  I can say without reservation that there have been changes.  His good is much better.  He is more functional and anxiety is very much decreased from what it was when we started.  The flip side of this is his meltdowns - when they do occur - are terrible. We've seen many more instances of throwing himself on the ground, slamming his head into the wall, throwing materials at school, and hitting himself in the head.  We've randomly seen all of these issues come and go with Ayden, but it is every time his anxiety gets bad or he is frustrated that we see them now.  None of it has harmed himself or others but it's very difficult to watch.   I was looking forward to starting to wean him off the drug for this reason, but our appointment was rescheduled due to weather so we have another week still before we start the weaning process.   I personally believe he is on too high of a dose (though we have discussed the possibility he is on too low of a dose as well) so getting into the extension will be interesting.

As far as speech goes, we are progressing.  Since my last update on the trial we have added more words and also sound isolation/imitation.  This is perhaps the most exciting to me of everything we have seen.  Ayden has been in speech therapy forever, but without even attempting to imitate or isolate sounds speech therapy doesn't do much good.  I very much understand it just could be time for this to start happening for him and the fact we are in the trial could be coincidence - but I just don't think it is.   Time will tell, though!

My next update will be during or after the weaning process.  If he has been on the medication this entire time as I think he is, we should notice some significant changes back to old behaviors.  Here's hoping I keep my sanity the next month or two as we transition him off and then back on again for the extension.

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Minocycline at Four Months

It's been a while since I posted anything about how the Minocycline was going with Ayden.  We started at the end of March and now are mid-July - almost four months in.

I can say with certainty that the mino is definitely helping Ayden, just not in ways we totally expected.  In the middle of June, I somehow forgot to give him his medication for an entire week.  Over the course of that week we began to notice behaviors emerging that we hadn't seen in a while.  It didn't click until I realized exactly how long he'd been without the minocycline and put it together with the emergence of these old behaviors that what we were seeing was related to not taking the medication.  Within a couple days of starting the minocycline back up the behaviors again let up.  Very good news, and certainly a reason to keep him on!

Other things I've noticed are that he is really doing well with words and small sentences.  It's hard for him, he has to really work to produce any sounds deliberately - but he does.  And OH is it music to my ears!!  So far we can get him to say Mama, Dada, Ball, Birds, Bubble, Bus, and sometimes Car.  Outside of those, he spontaneously will say Yeah!, No, and All done (but not when prompted).  That's a total of TEN words he can say!!  In addition to spoken word, he also has "signs" for yes, no, all-done, please, more, sorry, help, and play.  Many of these happening after we started minocycline.

In addition to words, he really is attempting to communicate his wants/needs more to us.  He has continually amazed me with showing us and finding new ways to tell us what he wants.  We use PECS at home, but when there is not a card for what he wants he can get very creative.  He wants to be heard, and not just to get what he wants.  You can see him wanting to join in joking more and do things to make others laugh.  It's a joy to see his personality emerging even more than it already has.

So, while the mino isn't a miracle drug, it certainly has been helpful for us.  I feel like no single therapy or medication will work by itself to help him make advances, but a few of them together.  Between school, the work we do at home, and a little help from the mino we really have made huge strides in the past four months.

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Language Update

We have been seeing some slight improvements in language for Ayden recently.  I always hesitate to say anything or get excited about him saying new words because he often loses them after a short amount of time - but here it is anyhow!  Of course each time I hope it will be different and the words will stick around, but I have yet to see that happen.

This time though..well, it feels different.

We worked a lot on getting Ayden to say "mama" since he was making the M sounds so well.  Work like that is always a lot of tears, usually for both of us.  He doesn't like it and I don't like to see him so sad either.  We persevere though, and instead of just saying words randomly this time, Ayden is able to actually repeat the words back to us on command.

Why is this part so important?  Due to the FXS, Ayden has what is called Developmental Apraxia of Speech (DAS).  What this means is that the area of his brain that tells the muscles how to move and what to do to make a particular sound or series of sounds is not fully developed or functional.  This makes retrieving the motor plan for saying a word difficult.  With DAS, frequently a child may be able to produce a sound or word at one time and not be able to say it again when he wants.

Back to Ayden then, he is now able to repeat about 4 or 5 words after me when I ask him, and has another 2-3 words/phrases that he is saying at the correct time, but is unable to reproduce when asked.  For example, he will often say "all done" as he signs it, but when I ask him to say "all done" he is unable to say it.  I'm finding as he is able to speak words on command, following the same beginning sounds seems to be easiest for him when I request a new word.  So we will go over the words he knows, then begin trying to get him to repeat words with similar sounds.  "Mama" "monkey" "man" etc... "ball" "bubble" "bus".  I find he can come close to other sounds when given a word that starts with a sound he is good at.  We'll keep working with him and see where it leads.

I sincerely hope this language jump for him continues and is the start of a new chapter for him.  IEP time is quickly approaching and we will be making a decision on whether to send Ayden to kindergarten or hold him in the ECSE classroom for another year.  It sure would be nice to have a little bit of language under his belt before we make that decision this May.

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