The Drug Trial - Your Questions Answered

I get a lot of questions about the STX209 drug trial, so I'm going to use this platform to try and answer them all.

First off, if you want to read more about the trial itself, the whos, whats, wheres, whens, and hows, you can go to http://www.clinicaltrials.gov/, and search for STX209.

And on a side note, let me just comment on how much the above sentence sucked to type, on a keyboard where the "h" doesn't work.  Feel my pain.

1) Do you have to stay in Chicago while the boys take the medicine, or can you go home?

We can go home.  This trial involves 5 trips to Chicago in 4 months, which is easily the most challenging part of it.  Eight hours in the car, one way.  No matter which way we go, it's a full day in the car.  I figure it'll get easier, every time we do it, but it's definitely the hardest part.

2) How long will the boys be taking the meds for the trial?

It looks like it'll go until mid-December.  We don't know if they are on the drug or the placebo.  The doctors don't know either - as they put it, only the computer knows, right now.  At the end, in December, we'll find out whether they were on the actual trial medication, or the placebo, or some combination, resulting in either a high, medium, or low dose.  At that point, depending on what kind of results we saw, we can decide whether we want to continue the study and apply for an extension.

3) Do you have to log their behavior after each dose?
 I don't specifically have to keep a log, no.  They will ask me for updates regularly on how it's going, but they didn't give me any idea what kinds of changes to look for.  I suppose they didn't want to put ideas in my head, to keep me as objective as possible, but I already know somewhat what kinds of behavior changes we could see, because I've talked to people whose children have been in earlier phases of this same study.

4)  how did the boys do with the evaluation?

They did pretty well.  The blood draw was painful, figuratively and literally, just as I imagined it would be, but I bet there's not a drug trial in the world that doesn't require some blood draws.  Zack screamed, AJ sobbed, and I managed not to do either of those things.

The EKG I was super worried about and it was really easy - Zack went first, because AJ always wants Zack to go first with everything - and Zack doesn't mind - and he just watched, curiously, as she stuck the monitors on his chest, arms, and legs.  AJ watched as well, and then came over and stuck his arm out.  he was ready for his stickers too!

The urine sample was the part I was most worried about, actually.  They aren't even remotely potty trained.  If anything, they are negatively potty trained -- they'll hold it and wait for the pull up to pee, rather than pee without it.  So my mom, back in the day, used to be a pediatric nurse.  And do you know how they get urine samples from infants?  They put a specially shaped bag over the baby's "thing" and then just wait for nature to take its course.  And that, my friends, is exactly how we got a urine sample from AJ and Zack.  It was so simple.

5) how do the boys swallow the pills?

I bury it in a spoonful of applesauce and they gulp it right down.  I'm pretty sure they know it's in there, but most of the time they are cooperative.

6) When do you think you'll start to see some changes?

It's hard to say.  I do think this med takes some time to get into a person's system and start to take effect.  Since they started on Monday, I had it in my head not to even think about it until Friday.  Now that it's Friday, I'm thinking I'm going to try to hold off expecting anything until Monday.  But I also know, it might be a couple or few weeks.


I have to get back to fighting with the good computer now.  You know, the one that won't start up.  have a wonderful day!

STX209 -

It feels like it's been forever since I had time to post here!   And so much has happened!

(BTW, the boys finally succeeded in completely killing our "good" computer.  So today I'm on the computer where the "h" doesn't work.  So if you see "te" here and there, it's because I missed pasting an "h" there.  I can't tell you how much fun it is to have to type Crtl+v instead of"h" over and over and over.)

We did it!  Finally.  We drove to Chicago, visited Rush University, and started the STX209 clinical drug trial!

We have been wanting to get involved with this trial mainly because it's been shown to help people with Fragile X with social anxiety.  In other words, it might help them tolerate a cafeteria.  Or a school playground.  Or a busy doctor's waiting room.  Or just, regular life.h

Well, that and the fact that I like helping out with a drug trial that will help kids and grown ups with Fragile X.  I like the idea that my boys are helping further the research, helping make sure this gets through the FDA approval.

I have to say, after anticipating this all summer, giving them that first dose was pretty exciting.  Every dose after that one has been exciting.  Now, there's a lot of different possible scenarios here -- they get three doses a day and could be getting one of several different combinations of different dosages of the trial med, or the placebo.

I'm not sure what we are expecting.  While I have hopes it'll be a kind of "awakening" for them, I'm trying not to assign too many expectations here, partly because I'm not supposed to-- I'm supposed to try and be as impartial and objective as possible -- and partly because I just don't want to be disappointed.  I mean, there's still no miracle cure here.  They will always be two boys with Fragile X.  This isn't going to eradicate their "special needs" status.

I know too, that it could take awhile for the affects of the med to start being noticeable.

But we are watching them closely for signs.  Are they getting the actual medication, or the placebo?  On the first night on the medication, our second night in the hotel in Chicago, Zack had a hard time falling asleep.  He got himself all worked up into a little snit.  He screamed and threw pillows on the floor and kicked them.  Then he put them back on the the bed, staring at me through tears, saying "good boy."  Then he'd throw them all on the floor again.  AJ just watched him in a daze.  They were both sooooo tired.

"Well, I guess Zack's on the placebo," my dad decided.

What?  You think we should give it more time??

Sounds simple, right?

This morning Zack got up first, and went straight to AJ's room.  He opened the door and announced "Hi AJ."

And we heard AJ say back, in his sleepy, first-thing-in-the-morning voice, "Hi Zack."

And even though we kind of wish Zack wouldn't wake AJ up, and even though it was 6:20 AM and Mark and I were pretty tired because we are both fighting off head colds, we looked at each other with huge grins.

Because that was the first time we've heard them greet each other like that.

Guesting

Today The Fragile X Files is featured on this fun blog called "The Scoop on Poop," as the "Best Scoop of the Week."  I'm totally thrilled and honored to have written a guest post for her blog today.

Please go there and see how I answered the question “What is the #1 piece of advice you’d wish someone had told you way back in the beginning that would have made your life easier as a special needs parent?”

It was a challenging question but in the end, I did think of one person who said something that helped me more than any other.....

Plus, it gives me an opportunity to introduce Fragile X Syndrome to a whole new audience!  It also makes me think about inviting some of my favorite bloggers to guest post here.  Let me know if you are interested.

This weekend we'll be busy getting prepped for the trip to Chicago, to begin the STX209 drug trial.   Details about how the trial is going to work coming up tomorrow.

Autism vs. the Autism/Fragile X Combo Pack

It's such a time of change around here.  I feel like I just go with the flow every day, and I want to be flexible like that but I feel so out of control.  I'm tired of being reactive.  Just one day, I'd like to not have to react to something unexpected.

We are still getting used to the idea that our ABA therapy is probably coming to an end.

Three and a half years ago, when we started this program, Nancy was full of sales pitches that included strong claims of how this therapy could "cure" them.  Alright, she didn't say the word "cure."  But she bragged quite a bit about statistics of kids who went through their therapy program and then went to school not needing any aides or support of any kind.  Kids who were able to be mainstreamed in the typical classroom, keeping up with their peers and their studies.  Showing no signs of autism.

And while I try to have high expectations, I knew this was not going to be the case with us.  And I tried to tell her that.  The autism/Fragile X combination was going to make "graduating" from the program a lot harder.  Her statistics didn't include kids with Fragile X.  I also suspected that ABA therapy would be very good for the boys, though, and that while they most likely wouldn't be entering school without aides, it would definitely help them.

Still, it's sad to me that they will be quitting the program, rather than graduating from it.  It's the same way we ended things at Courage Center - our insurance stopped wanting to pay for it, because they weren't making enough progress - so we started the ABA program.  This time it's not because insurance doesn't want to pay for it, but history is repeating itself - therapy is ending because they (well, only Zack, really) aren't making enough progress.

My poor little Zack.  He is getting used to the full school days, though.  It was a slow transition because he was sick a couple of days and had to stay home.  Actually everyone's been sick.  I'm the only member of this household who hasn't been on antibiotics in the last month.  Well, me and the cat.

September has been such a busy, scattered month.  I hope things settle down soon.

Me Being Political - PIP

I started Partners in Policymaking this weekend.  Every state but Vermont does a PIP class and it started right here in Minnesota, 25 years ago.

It's a government program that trains us to fight for government policies for people with disabilities.  In other words, the government is teaching me how to fight the government.  How awesome is that?

Classes are once a month on a Friday and Saturday, for this whole school year, ending with a big graduation in May.  In March our class will go to the capitol for Disability Day, which I did this past spring, but I felt like a fish who'd flopped out of my little glass bowl.  Maybe going with my PIP class this coming year will make it less awkward.

Anyway, Friday, the very first day, the first thing they did was shock us into realizing how badly people are needed to work to promote legislation for people with disabilities.

You know how when there's a story on the news about a child or a person with a disability being abused or injured or killed, and you tend to turn away or turn it off altogether, because it is just too disturbing and you'd rather not hear it?  Imagine if you had to sit through story after story after story for several hours.  My stomach turned over about six times.

There was a detailed and lengthy account of how people with disabilities have been treated and viewed throughout history.   Horrifying stories of torture, abuse, neglect, exploitation, misunderstanding, and disrespect.  Nearly every example from history was followed by a recent news story showing us how the very same types of treatment and abuse and misunderstanding occur today.

So we were all emotionally smacked upside the head.

Suffice it to say, it wasn't light entertainment.

It's going to be grueling.  But I have a sneaking suspicion this may turn out to be the most valuable schooling I've ever gotten.

Cousins Taking a Nap

In the News - Autistic Boy Lost in the Woods

Did you see this news story out of California, about the 8 year old boy with autism who was found after being lost in the forest overnight, during a thunderstorm?  He had been removed from his parents' custody after he was found tied to a post with a nylon rope.  Sounds horrifying, if you don't have children with autism. 

Sounds like too much of a real possibility, if you do.

This story breaks my heart.  I want to say I'd never tie my kid up to something, but who knows.... I've done a lot of things I said I'd never do, and it doesn't sound like his parents put him in danger -- on the contrary, they were protecting him.  But that is something that a parent of a neurotypical child might not understand.

The Department of Children and Family Services should have understood that, though.

To think that the Dept. of Children and Family Services, local law enforcement, and the Superior Court all saw what this famiily was doing as a danger to the child.... now of course I don't know the details of this case.  For all I know, the media totally misconstrued this story.

All I know for sure is, I can see the possibility of us being in this situation, and it scares the bejesus out of me.  Because my boys are runners.

Often people don't understand what we, parents of autistic children, have to do to protect our children from the world and from themselves.  If I didn't have a fenced in backyard, I could never, ever open the door and just let my sons run outside.  Not unless I was no more than an arm's length away from them.  Because they will run into the street and keep on going.

Did no one understand that they were just trying to keep him safe?  Was he tied up too tight?  Was he crying?  Was there another reason for them to take him from the home?  I hope it was fully investigated.  As much as I don't like to think the parents WERE doing something they shouldn't have.... I hope the three entities responsible for making the decision to remove this boy from his parents had darn good reasons.

Because I bet being removed from his home and his parents caused him unbelieveable anxiety and fear.  I bet it made his behaviors worse.  Which in turn they'll probably blame on the parents, somehow.

It just scares me.  The lack of comprehension on the part of the authorities.

"He was looking for us," his dad said, of why he ran away.

He probably was.  Nobody would know better what his reasonings were better than his parents.  And the thought of one or both of my sons being taken from me because of someone not understanding the things we sometimes find ourselves doing, to protect them from the very kind of misunderstanding that probably occurred here.... and then running away to find me.....

I know my boys are "momma's boys."  They are attached to me.  They are happier and more relaxed when they are with me.

I can imagine the terror these parents felt, knowing their boy was out there somewhere, lost and afraid and looking for them.

And I think if this were me, at this point, I'd have an unbearable amount of rage inside me at Child protective services.  I don't know how they do it.  I don't know how they don't explode with anger at the system that was supposed to protect this kid, and in fact just ended up putting him in even more danger.

Speed Bumps

Apparently I am not meant to do anything but stay home with children.  All three should be suffering through full days of school now, but the first couple of weeks have been full of speed bumps.

All three went to school on the first day and evidently dipped their hands and heads right into the giant vat of germs and bacteria that I think every school must have.  Aliza was sick a day and a half last week.  This week, Zack has stayed home Monday and Tuesday.

AJ has been doing splendidly. He loves being there and they are thrilled will how much more he is talking.

This is also the first time the boys have had a meal at school, and neither one is really eating lunch.   I am trying to decide at what point I intervene. At what point do I say, "Let them eat in the autism room - so they will at least eat something!?"   By the end of the week they were munching on a little cereal in the cafeteria, but still not touching their sandwiches.

That's another thing -- peanut butter and jelly sandwiches are about all I can make them for lunch. There's nothing else they eat that I could easily pack in a bag and let sit all morning.    I guess it's going to be PBJs for them every single day.

Zack has been sad. On Friday, the notes from school say "Today's Zack's preferred activity was to sit in a chair in the choice time area and look out the window. It was SO unusual, he sat almost completely still. A few separate occasions he started to cry quietly and looked very homesick. He required lots of redirection to distract him from feeling the blues today."

My poor boy. He's having a very tough time adjusting to the long days.

We have a ton more language than we did a year ago, but they're not exactly conversational.  It would be nice if, when they are sick, they could give me a couple of specifics.

In happier news, this past weekend we took the boys to the Burnsville Firemuster parade - see here for details from last year's parade adventure.  They are way, way too big for the stroller, but they feel secure sitting in it, so I don't dare get rid of it.

Almost smacked Grandma with that flag.

They don't look too thrilled to be there, but they didn't struggle to get away and repeatedly say "go home?" so I consider it a huge step forward!

This year they actually sat and watched the whole thing.  Well, they watched most of it.  One other great benefit of this stroller is the way you can hide from the world in it.

Aliza got to scratch off something on her bucket list ("Things I Want to Do Before Middle School").  She walked in the parade with her dance team.

Hoping Zack's nose clears up enough for him to go to school tomorrow..... today he's going to be watching a lot of Little Einsteins and doing puzzles and fun folders.

It's been a bloggy kind of day

I hobnobbed with some very cool bloggers today at the Minnesota Bloggers Conference.  It was informative, entertaining, enlightening, and FREE!  Minnesota has a wonderful and large blogging community.  And I, of course, jumped at the opportunity to spread awareness and wore my "Got Fragile X?" t-shirt (Mark's idea).

I want to thank all those that put it on (by their Twitter handles):

@bridgetmonroe
@suzimn
@jlbraaten
@whereitblooms
@marketingmama

And the sponsors of the event:

TopRank Online Marketing
KARE 11
Allina Hospitals and Clinics

I saw some of my lovely bloggy friends, and met some new ones.  I learned about how to make sure my giveaways and reviews align with current FTC rules (if I ever have any giveaways or sponsors, I'll be ready).  I found out there are lots of places I could go to, if I ever decide to publish my blog as a book.

It was interesting to me, though, how many people take their blogging very, very seriously.  It's not like Blogger sends me a biweekly paycheck.  I don't make a dime (nope -- that BlogHer ad you see over there hasn't paid me anything, yet.).  And those bloggers who do make money - they invest a huge portion of their time and energy on their blogs - usually only to make enough for "beer money."

Not that there is anything wrong with that.  More power to them, I say.  They are having fun and have a fulfilling hobby and pasttime, that actually pays them a little.

This is also not to say that if something doesn't pay well, it's not important.

Wow, look at me, backpeddling.

I guess I just don't blog for the same reasons most people do.  It's not that I'll NEVER have a sponsor or do a giveaway (actually I've been pondering a giveaway....).  I'm just trying to make myself remember why I started doing this in the first place.

It's easy to get caught up in the blogging game.  It's easy to get all competitive, scrambling and scratching for all the followers and page views you can possibly get.  It's fun to feel popular.

But the point here, at least for The Fragile X Files, is Fragile X.  Education, support, awareness, and friendship.

I hope my bloggy friends take the time to sit back and remember why they write.

Dear Target:

I love to shop at your stores.  My kiddos love it too.

Did you know there are a lot of autistic people in this world?  1 out of 110 children.  And that number seems to grow every time they do another study.

 
Two of my three kids have autism (and actually, more importantly, Fragile X Syndrome.  But for the sake of this letter I'll keep the references to autism).

I'm at Target with my kids at least once a week (and much more often, in the summer).

For the most part your stores are lovely.  Quiet, wide aisles, stocked shelves, and every store looks just like another.  Perfect for fulfilling our need for same-ness and predictability.

But you have GOT to get rid of those insanely loud hand dryers.

(Mall of America, the same goes for you.)

Sincerely and respectfully yours,
Bonnie

Last Hurrah

I'm not going to sugarcoat it.  I am pretty thrilled that school has started.

I'm sorry.  I'm not Kelle Hampton.  I have been Enjoying the Small Things (her blog name - don't pretend don't know who she is.  She's the hugest mommyblogger ever.  I know at least 1/3 of the people I know read her.  I admit, stalking Enjoying the Small Things is a vice of mine.  What can I say, she makes Florida and Down Syndrome look like the two most beautiful things on God's green earth.) for a while, but I'm ready to enjoy some me-time while my small things are enjoying their studies and their friends.

I want to be a Suck-the-Marrow (a Kelle-phrase) kind of mom like her, and I've tried, but I think we ran out of marrow around the second week of August, and since then we've been faking it.  It's not just me.  The kids are tired of pretending they are loving their free time too.

We did have sort of a last hurrah of summer last week one day, at the local duck pond.

It's kind of fun, watching the ducks divebomb each other for the stale bread.  You'd think they were starving.  I know for a fact people come out here every day, several times a day, to throw bread at the ducks.  As soon as they hear people coming down the path, they all start quacking and paddling over to the walkway.

But these boys have had way too much free time, because this is their favorite way to drive me crazy lately.  It wouldn't be so bad if they understood that it's all fun and games until someone is bleeding.  Just call me the ref.

Welcome to 3rd and 1st grade!

Two days and counting....

Adjoining desks.... how cute is that?

This is in their 1st grade classroom, not in the autism room.  So I'm not sure how much time they'll actually spend here, but I love the optimism shown by giving them little desks right in there with the rest of the class.

A Great Mystery of Life

Aliza wanted to make cookies the other day.  And I was recently reminded that she won't always be a little girl who wants to hang out with me.  The day may come when I'm not cool (I know, I can't imagine that either) and she won't want anything to do with me.  So of course I dropped the important stuff I was doing (playing Bubble Spinner on Facebook) and started to gather ingredients.

The thing is, you know who did all the work of making cookies?  Who slaved over a hot oven?  And who cleaned the mess?

And who ate the most cookie dough?

That would be me.

Can someone explain to me why raw cookie dough tastes so much better than the finished, baked cookie (which, while warm, is definitely a close second)?