Struggling

I'm not a complainer.  I see things that arise in our life as challenges to be solved.  I have a list I check each time we have to look at what to work on, an IEP, a behavior etc.  That list helps me to prioritize, solve the challenges in a way that works best for Ayden and for us.  So for me, every second spent complaining is one less second spent solving a challenge.  And the more time spend solving is less time enjoying life.

I have been struggling the past few months, though.  A  lot.  We are going through so many changes with Ayden that I don't seem to have handle on and keep losing footing.  It started this past summer.  We gradually began noticing changes.  Reverting to old behaviors such as more spinning toys, laying on the floor humming.   Perseveration of speech and even some toys.  Fixation on ideas.  He began asking for toys that he stimmed on when he was younger that he hadn't even seen in years.   Issac started school around the same time, so we were hoping it was just that.  When Ayden started back to school in September it was okay for him at school, but arriving home was...trying.   Almost each night was ending in tears or yelling (by one or both of us).  School was only seeing minor problems, so we just weren't sure what was happening.  We reached out to our doctor and started to try to tweak medications.  We had hoped his growth spurt that occurred directly before we starting noticing these issues was a cause.  The med changes only made it worse.  So we kept tweaking.  We added some sensory breaks.  We put more classroom supports in place. We discussed changing meds.  Then we noticed changes at home for the better so we decided to stick with the current tweak we had made.  Except within a week school was seeing the negative we had been seeing at home.  Hitting, pushing, refusing work, throwing his shoes, obsessive behaviors, loud, disruptive humming in class and OH THE CHEWING.  In the course of a month Ayden went from 85-90% inclusion to me receiving a call saying we had to fix it or we had to explore a different placement for Ayden.   We are talking about a kid who has been at least 50% inclusion in general education since kindergarten.  A kid who thrives on peer interaction.  Removing him completely is not.an.option. and [thankfully] our team is on board with this.

So, we backed off the tweak we thought had worked and went back to what we knew worked at school knowing that it may make home bad again.  Gradually the school days began to look up and then we had an amazing day for him.  I breathed a small sigh of relief.  The negative behaviors we had seen at home that trigger the changes did not come back to the same extent.  It was manageable.  School was getting better.  We would wait out the medication changes to completely take affect and then explore any changes over Christmas break.  Then came Monday - another bad day at school.  Then Tuesday - he hit his friend.   And me, I just felt done.  For the first time I can remember I wanted to throw my arms up and yell "I QUIT!".

I don't know how to fix this for him.  He isn't happy at school anymore.  With his limited vocabulary he can't tell me how to help him.  He can; however, tell me "I had a bad day", "I try harder", "I do better", and "I'm sorry, Mommy."   I'm so thankful I get that, so thankful for each and every word from his mouth.  There was a time when I didn't know if I would ever hear his sweet voice and it is not a memory I will forget.  My heart is breaking though.  We are working, we are not without a plan.  It is many faceted because we don't know the cause for certain (thus it is not typed out here).  I have no doubts we will make this better for him - the only question is how long it will take.  But it is the time leading up to the solution that is the most difficult.  The time where doubt and insecurities creep in and I struggle to keep myself focused and remind myself that the solution is not always easy.  Where I struggle to shrug off the worries and just enjoy life as it comes in spite of the challenges we face.  Where I have to fight not retreat into myself to cope.

I wish I had a nice, happy ending to this post - but for now I do not.  For those of you facing similar struggles on your journey know that you are not alone.  Remember there is always someone out there who will lend an ear - take advantage of it!

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Post STX209 Update

I've sat down to write this update so many times and then walked away, unable to put words down.  We are living day to day and taking each hurdle as it comes - looking at the big picture of changes is really difficult for me still.  All my time and energy have been thrown into readjusting to what has become our new normal.

We began weaning off arbaclofen and started adding racemic baclofen on June 9.  We have been off arbaclofen since June 23 and on our current dose of baclofen since June 16.  Current medication is 10mg of baclofen 3x per day.

We have seen good and bad with this change.  The best part is we have not seen much regression of language.  Ayden has actually added more words to his vocabulary in the past six weeks.  The regression is seen in how often and when he is speaking.  It's very difficult for him to initiate conversations or even simple requests now.  He has a difficult time walking into another room to say hi to someone even.  He's still able to isolate most of his sounds, when we can get him to sit still at least.

Which brings me to one of the biggest changes....focus.  Sitting still.  He quite literally cannot stop moving himself or something he is manipulating.  Sitting down to read and/or work on writing has become near impossible.  We were around 15-20 minutes right at the beginning of the summer and have now regressed to around 3-5 minutes.  It has made things very challeninging for me.  If I'm not occupying his time with productive things every single minute of the day he is stimming in some way or another.

Stimming has alos gotten much worse.  Most of Ayden's day consists of him attempting to stim in some fashion.  Spinning toys is the most prevalent of those, which is not surprising as he did it so much before.  I find it interesting with the stimming that it is actually worse than it was pre-arbaclofen.   I think this is mostly due to the fact that Ayden is older now and he's learning how to deal with these urges and anxiety he hasn't had to in months.  It's a lot to cope with, and I see this as his way of handling it.

Onto the anxiety...oh the anxiety.   It's prevalent in everything he does, everything we do.  It's taking a lot more prompting and a lot less doing 'things'.  Probably the most heartbreaking for me was to see how anxious he was when we went to the splash pad last weekend.  We made sure to go at a time that wasn't too busy, and that did seem to help.  He just couldn't run through it like he previously did.  He played with some of the things on the edges, but for the most part hung back and just watched the other kids playing.  Seeing him wanting to go do something he loves and just not being able to get his body to cooperate rips my heart in two.

We have watched fairly carefully over the past month or two and thankfully have seen a leveling out of these behaviors.  That is, they are not getting better or worse.  With this all of what we have been seeing, we decided to stop the baclofen. We don't believe it is helping him and if it is - the amount is much too small.  We've been working closely with our clinic doctor and decided to try treating his anxiety and focus for now.  Our goal is to have his medication stabilized for when school begins.  Our hope is by focusing on those two issues, we will see improvements in other areas as well.

On Monday we began the process of weaning off racemic baclofen.  The past few days were pretty horrible - it was much as I expected.  Night waking, higher anxiety, more meltdowns, totaly disregulation... the poor kid is a mess.  We will more than likely add his new medication starting next Monday when we drop his baclofen dose to 1x per day.  This is going to put us on track for around 1 month on his new medication before school begins.

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The Good and Not-So-Good

I have tons to share, but today just want to do a brief update.  We just returned home from a wedding that all three of the kids were in (for their aunt) and I didn't get to post a couple things I want to be sure get some attention.

Friday, something big happened.  REALLY BIG.

New York Times BIG.

http://www.nytimes.com/2013/06/07/business/an-experimental-drugs-bitter-end.html?pagewanted=all&_r=1&

I was interviewed a few weeks ago by a reporter for the New York Times about the end of the arbaclofen (STX209) trial.  The article has a few of my quotes in it along with a couple other fragile x parents.  I bought two copies.  I'm elated  that fragile x syndrome made an appearance on the front of the business page of the NYT.  E-L-A-T-E-D.

Then today, something big in it's own right happened.

Big, but not unexpected.

Big, but not good.

Titration began today.  Our last day with arbaclofen will be June 23.

I'm sure you'll have much to read about over the next two weeks, because I certainly will have much to say.   Normally I hold the worst back from here, because it is difficult to write.   It somehow seems more real to me in ink.  It needs to be documented this time, though.  I want others to see how this drug is helping but more importantly how taking it away is hurting.  

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STX 209 - An (almost final) Update

I've often heard fragile x described as having the sound of a vacuum in your head.  Consider going through life daily with that sound.  Attempting to speak.  To walk into large rooms full of people.  Imagine how difficult it would be and how easily you could become frustrated.  Imagine then that there was something you could do to shut that noise off.  That is how I look at arbaclofen - as an off switch for that constant noise in Ayden's head.  Now we have to turn that switch back on.  Devastated does not even begin to describe the emotions running through me.  Terrified.  Worried,  Overwhelmed.  Sadness.  And tears...lots of tears.

"We regret to inform you that Study 209FX303 [An Open-Label Extension Study to Evaluate the Safety, Tolerability, and Pharmacokinetics of STX209 (arbaclofen) in subjects with Fragile X Syndrome] is being terminated immediately.  The closure of the study is due to resource limitations at Seaside Theraputics, Inc., and is not related to any known safety issues in patients dosed with STX209."

You have seen our journey here.  From barely speaking, struggling socially, anxiety issues, and lack of self awareness to a little boy who was making friends, playing with those friends, playing with toys correctly, jumping into new situations with ease, going into loud places, laughing, talking.  TALKING.   What a difference six months and a little strawberry pill can make.

We were told the open label would be available until FDA approval (or lack thereof).  We were told 4-6 months notice if they were to ever stop the open label.  Things don't always go the way we expect though, and as of May 31 given just two weeks of notice, we have to begin the heartbreaking process of weaning Ayden from arbaclofen.

I took the night last night to sleep and hopefully feel better today.  I don't.  It's not fair.  The fact that this comes down to funding is just too much.   I'm hoping beyond anything else that we don't see regression.  That somehow this drug has made lasting connections that will continue.  That the drug only supplemented and helped what was already happening with Ayden developmentally.  I don't want to lose him into himself.  I just can't.  I won't.  We WILL find something.  We will do whatever we can to help him.  We always have and will continue to do so.  

We have other options for him.  We do know he needs something to help him with anxiety and focus.  We were at that point when we started the STX209 trial.  It was a good fit for us, we didn't have to wean off anything to start the trial because he wasn't on anything.   We knew this could happen.  It doesn't make this easier.

For now, I need to purge these raw, negative emotions.  Then, then I will look to tomorrow.

“You do not need to know precisely what is happening, or exactly where it is all going. What you need is to recognize the possibilities and challenges offered by the present moment, and to embrace them with courage, faith and hope.”  - Thomas Merton


Some other parent's blogs that were involved in the 209 trial are sharing their thoughts as well.  You may click on each person to read their thoughts.  I'll update as I see more.

Holly
Melissa
Kristin
Rachelle
Bonnie
Kristie

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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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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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