STX209 Trial

Ayden turned five in July, which meant he finally was in the age range to participate in the STX209 trial I've posted about a few times.  At the time, we were unsure about putting him in it and actually had him on minocycline to see if we could see some improvement from that.  With only minor changes happening with the minocycline, we decided to do the pre-screen for STX 209 to see if Ayden even qualified and what all the trial entailed.

Turns out, he did qualify for STX 209.  We decided to go ahead and enroll him in the trial back in August.  Our nearest site is in Chicago, so it took at a little planning.  See, the first three visits are each two weeks apart and then there are two more visits about 4 weeks apart that follow the initial three visits for a total of 5 visits. In fact, the study actually includes 7 visits, but they combine the first and last two into one.  It is a lot of travelling for us.   Each visit is a one day trip to and from Chicago (4 hours each way).  We decided to enroll him anyways after all the amazing things we have heard regarding STX 209.

Well, our initial appointment was set for the first week in September.   A week before our appointment, we were asked to delay a month, pushing the first visit out to the beginning of October.  A few weeks before that appointment we once again were rescheduled but this time for just a week later.  As I'm sure you're guessing already since I haven't mentioned we started yet - just two days before our appointment we once again were asked to change our appointment.  Asked is probably isn't the right word...told we had to is better.  Our first appointment is now scheduled for October 29.  This pushes two of our visits into the holiday season (one of them actually has to be between December 20 and 25 - that's some nice planning) not to mention the stress of driving to Chicago in winter.  I'm incredibly frustrated at this point but what can we do if we want him to participate?

I'm hoping this will all be worth it for us.  If not, at least I know we've helped put others whom the drugs IS working for one person closer to having the drug FDA approved.  In the meantime, look forward to our first visit update *hopefully* around the end of this month.

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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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Minocycline - 1 Month Update

Well, we're a bit past the one month mark - but I've been so busy I never posted an update!

I really wish I could say this has been our little miracle for Ayden, but that just isn't the case so far.  I do think it has helped him in the month he's been on it, but it hasn't been as effective as I've heard with other FX kids.  The good things we're seeing still include him attempting to communicate more and better.  He is still pushing limits when it comes to using PECS and finding new and creative ways to tell us what he wants.  He is still playing with toys the way they were meant to be played with sometimes - though spinning continues to be one of his favorite past times.  We are also still seeing his fixation on certain toys much less.  All of these are great things for Ayden, but we were just hoping for more.

That's not to say the next month isn't going to start showing improvements again.  I know many parents that haven't seen changes for the first few months and I've been told anywhere from 2 weeks to 6 months.  We are certainly not giving up, but still being cautiously hopeful.  In the meantime, I'm very excited to see the changes we have seen in Ayden since he started on Minocycline.  Not what was expected, but fantastic changes nonetheless.  We'll keep moving forward and I'll update as we go along.

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Minocycline Update - Week 3

Week three of the minocycline has come and gone.   Not much new to report this week, we're really seeing much of the same.  The initial boosts we saw the first week or two seem to have tapered off, but the results are still there.

Ayden really is doing a fantastic job communicating with us.  It's not exactly the speech we were hoping to see, but he is trying and that is more than before.  We went through a small phase as we do with any time he starts to communicate new ideas where he would be frustrated with us not understanding him.   That phase was much smaller and quicker this time though for the amount of communication we received out of it. Probably the best communication that has emerged lately is that he is using the sign for help much more often, and to tell us when he wants to help with something as opposed to when he wants help with something.

The other thing we are seeing much more of is a change in his play habits.  Where he started off by not fixating on certain toys as much, he has now moved into playing with toys that don't make noise or spin and playing with them correctly.  I am continuously amazed at how he is advancing so quickly especially in this area.  There is no doubt in my mind this is due to the minocycline.  The chance it may be coincidence that it has lined up with  him taking the medication is just too small.

I'm not sure what my expectations were going into starting this medication for Ayden, definitely we were hoping that speech would advance.  I certainly did not expect to see the advances in play we are experiencing though! Ayden continues to amaze me each day with the changes however small they may be.  It's difficult to explain the joy at seeing your son play with a toy correctly without being forced to.

I'll continue to update as we progress.

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Minocycline Update - Week 2

So, we're now inching into week 3 on the minocycline.  I'm noticing two pretty big things happening with Ayden.

First, there is certainly an increase in the type and amount of sounds coming from him.  His humming that he has done forever has turned into a mix of sounds/babbles and humming all mixed together.  He will look at you and babble away as if telling you something, but it is usually not able to be understood.  Along with this is also an increase in communication.  He's trying so hard to communicate with us outside the bounds of just normal wants/needs.  I noticed him approaching two people in conversation multiple times over the past week where he was following the conversation back and forth.  I've even noticed he has moved away from just requesting his preferred items to requesting any item he can - and finding unique ways to request the item if we happen to not have a card available for what he does want.  These are all fantastic leaps for him, and within the course of two weeks makes me extremely happy.

Second, we are beginning to see him playing with toys and items in not such an obsessive manner.  He's been very good about switching between toys/items even when they are his preferred items much more quickly than normal.  He's also finding interest in toys that aren't just his normal types of toys quite often.  He still sticks with toys that spin, move, or make noise for the most part but seeing him pick up and action figure has not been outside the realm of possibility recently.

As an update to the observations last week, the sleepiness has definitely worn off.  I'd put that in the category of either just adjusting to the medicine or his allergies/cold he had going on.  The increase in stim behaviors also seems to have diminished as well.  He's back to his humming at a normal level (though as I mentioned, the humming is mixed with babbling now), the flapping is less than normal but more than last week, and the rocking seems to have disappeared altogether.

With him back to school this week, I'm going to be very interested to see if his teachers notice any changes as well.  Until next time...

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Minocycline Update - Week 1

As of now, we have completed our first week on the minocycline.  It has been an interesting week because I've been paying close attention to anything abnormal with Ayden and of course our Michigan weather took this week to drop the temperature back down after being warm for a week.  Between the temp change and the high pollen counts allergies have been out of control.

I've been logging observations each day to see if there happens to be any patterns of change with Ayden over the course of the week and am not surprised to see a few.  I can't say these are the product of the minocycline as of yet, but they are [mostly] good changes nonetheless.

1)  Ayden has started babbling with different sounds than normal and more often.  No new words, just different sounds.

2)  I've noticed a few of his stim behaviors becoming more prevalent such as humming and rocking; however, I've also noticed less flapping.  Ayden's stims tend to be worse when he is tired and doesn't feel well - so that may be the cause of the increased humming and rocking.  As for the decreased flapping, well, that's normally for extreme happy/excited which when you aren't feeling well tends to be less anyhow.  I may not have even noticed had it not been for being extra observant.  Which brings me to my third point...

3)  He's been extra tired this week.  Again, may just be the allergies or adjusting to the medication.  Something to watch at the very least.

4)  Communication with our PECS system has been amazing this week.  He's really been trying with his cards to communicate what he wants and doing a fantastic job of it.  Again, this could just be the result of the fact we've been pushing him to use it more but he's using cards differently as well to make his sentences.  Things like bringing me the cards for his shoes and sandles with the yes and no cards to show me which ones he would like to wear.

5)  The last thing I've noticed is that Ayden is not fixating on certain "favorite" things as much as the week has progressed. The iPad being one of those things.  Usually I will need to stop him when his time is up, but he has been bringing it to me lately and saying he is all done.  It's been that way with most things where he is actually moving between activities more often.

I do want to again emphasize that there is a good chance these changes are not the medication and more a result of my being extra observant this week.  I plan to keep logging to see if there are any patterns after our first month before I'm ready to say it is or isn't helping him.  I sincerely hope we do see the changes so many others are noticing with the minocycline, but as each person is different you just never can be sure.  Next week should also bring about an odd mix of changes with Spring Break and our vacation to my parents house for Easter (a few of those days without Daddy around).

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Minocycline - Day 0

So here we are...medication in hand!

Tomorrow we start Ayden on minocycline.  Getting the right form/dose of the medication is a bit of work, but I think once I'm used to it, it won't be so bad.  We currently have him on gel capsules, but since they don't make them in a low enough dose we have to split them open into water and give him the doses that way.  We're hoping to find a pharmacy that can fill a script for 50mg tablets even if we have to order them.  I know Ayden will take that so much better anyhow.

Today, we had to take him in for some blood work before beginning the medication.  Blood draws and Ayden are two things that just should not be put together for sure.  Needless to say, it was recommended and we felt it in his best interests before starting the mino.  Turned out, he did much better than expected though!  He still had to be held down, but really that was the part he hated the most.  Daddy was the one who had the honors this time, and said Ayden didn't even flinch when they poked him.  He was a bit clingy after wards, but a trip to visit the fish at Meijer followed by lunch at McDonalds definitely helped him out.

The next week or so should be interesting as we watch for any adverse reactions.  I'm stressing a little about it, but only because he can't tell us if something is wrong so we'll have to watch him pretty closely.  I think it's a mom thing!  I can't wait to track any progress he makes, but am trying not to get my hopes up knowing it doesn't work for every FX kiddo.  I'll keep you updated as we progress!

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Minocycline Update

I posted before about the minocycline trial running at the UC Davis Mind Institute and how we had been approved for the first leg of clinical trials.  The timing ended up not working out with the baby, so the plan was to call after Emma was born to see where they were with the trial.  When I fianlly made the call this past week, I found out that unfortunately the funding for the minocycline trial was not renewed.  Thankfully, the staff at the FX Clinic at MIND is amazing, and they sent us information to give our pediatrician as well as dosing information to try to get him on it ourselves.  They even said they would speak with our pediatrician if she had any questions.

So...now we are awaiting word from our pediatrician about whether or not they will write the prescription for us.  I have to say I'm a bit anxious and honestly will probably look for another pediatrician for him should ours decide not to do as we request.  We certainly are not a family that likes to use medications unless beneficial, and I have done my research on this.  We wouldn't be asking if we weren't sure. I'll keep updating as we hear more, but hopefully we'll get the okay and start seeing some positive benefits of the minocycline soon.

Update:  Between writing and publishing this post, we did get the okay from the pediatrician to start on minocycline.  We are still awaiting the actual prescription, but I'm so excited it should be soon.  She really took time to look up benefits and even suggested we do a B6 supplement to help counter some of the side affects as well.  We're going to make sure we're tracking progress, and are so hopeful we may start seeing some benefits soon.

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Minocycline Trial

We received a nice call a few weeks ago asking to enter Ayden into a clinical trial at the Mind Institute.  It turned out that he actually surpassed the age limit on the trial between sign-up and when they would be actually doing the testing, so we couldn't get him into that specific trial.  It is all seeming to work out though, as the same person was running that trial as is running the upcoming Minocycline trial!  She was very kind, and informed me that Ayden would for sure get into the Minocycline trial, to which enrollment would be happening mid-October. 

What does this mean for us?  Most importantly, Ayden will be seen at the Mind Institute and have a visit with Dr Hagerman.  For those reading that haven't heard of Dr Hagerman...she's basically the leading expert in the world on Fragile X.  (No, you did not read that incorrectly - I did say world).  Of course, this would also put Ayden on Mino, which is something Mr Awesome and I are actually hoping will help him out a decent amount. 

The tricky part to all of this?  We have to either fit in a visit to California before the end of the year, or wait until after the baby comes and go after that.  I think waiting will more than likely be the most beneficial, especially as we should have the baby tested by that point in time, but much will depend on what they want to do at the Mind Institute.

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