Our Clinical Trial is Coming to a Close

Our participation in the clinical trial for STX-209 is almost complete. Noah just took his last dose of medicine & we go back on Monday for the last visit in the trial. We get the option of putting hi on the medicine THE OPTION?? It's a requirement (for me) there is not one doubt in my mind that we were on the medicine and not the placebo. Everything changed for the better communication appetite, cognitive skills, interacting with the environment, age appropriate toys, social skills improved, ability to educate him & retention of what we had covered. Are there still areas for improvement OF COURSE but as far as I am concerned I think WE ALL have areas of improvement don't we?

I hope we get to continue with the same staff members on our follow up visits. They are incredible we went from visit 1 with a TOTAL meltdown after the blood draw. I mean laying in the floor kicking and screaming you know the kind. Now when he has blood drawn he watches and says "ow" and it's over. He loves going to Vanderbilt we always get pizza for him from the Pizza Hut downstairs. He loves his own little pizza. Of course we have to keep the box, he is such a little hoarder we walk through the parking garage and he is picking up pieces of paper and shoving them in my purse.

When we started this part of our journey I had no idea where it would end up God works in mysterious ways, I was at a point where we didn't know where to turn. We were on waiting list all over the city but his behaviors were escalating. I am talking biting, hitting, kicking, stomping on me If he knocked me down. This was constant, I had considered anti psychotic drugs but the side effects concerned me. I got the email from Vanderbilt about the trial I immediately called and the next week we were there. God has truly blessed us and once again pointed us in the right direction to continue to help Noah and our family through our journey with autism.

Hasn't been a week yet...

It's already a nightmare!!!  We are at the point in the clinical trial where we are "coming off" the medicine.  Hubby is still not convinced that he wasn't on the placebo.  After the 30 minute meltdown at dinner because of seating issues.  We were playing musical chairs at dinner.  He is having sleep issues again, he got up at 5:30 am this morning AHHH.  That's suppose to be my "quiet time" well not today.  He has been difficult all morning, I wonder how he feels, he can't really tell me how he feels.  I am just counting the days until March 22, 2012 that's when we go back to Vanderbilt and we can "for sure" get on the medicine.  It helped him SO much in alot of different areas communication, behavior, interactions with others, eating new foods, reading I know that when we get on the medicine he is going to continue to excel.

The Fun has Already Started & Proud Moment

Well we went to Vanderbilt and it's time to come off the medicine OMG he is already starting some of the old behaviors already. After he got up this morning it was about 5 minutes later I hear him crying I get back upstairs to see what's wrong and he screams, hits me and says my DS turned off. Then he started crying again because I didn't understand what he was trying to tell me he got REALLY upset and started screaming at me. I guess this is the way it is going to be the next month this SUCKS! But knowing that after this month we can get on the medicine will hopefully help me get through it.

He has been a WILD CHILD today, surely this isn't what  to expect for the next month.  A have been like a crazy person today too, may be that's what wrong he is sensing that I am out of sync today.   Other times he is the sweetest thing, come to me and tells me how much he loves me!!!

He has started to "lie" I can't believe it,(what a proud moment) he doesn't want me to throw anything away, so he got some paper plates out of the trash.  I started to close it and noticed the plates were missing, i asked Noah if he has them, "No No I don't have them I didn't get them out of the trash."  I told him what he was doing was lying and he looked puzzled, so I said you have to tell Mommy what you did that's called the truth.  So he went and go them for me to throw away.  I hope we don't end up on that TV show Hoarders LOL!!!!!

He said what??

At the dinner table last night, Savannah & Noah were "talking"  about different colors, so Savannah asked Noah what's your favorite color??  Noah said. "Purple" (which we already knew) She then asked, "What's your second favorite color?"  (I wasn't sure he understood what that meant)  He thought for a second and then said, "Green."   WOW!

I had to prompt him but he asked, "What's your favorite color?"  Savannah said. "Blue."  So I thought great job, then Noah blurted out, "What's your second favorite color?" AWESOME, no prompting an appropriate response no help!!  I was SO PROUD of him & Savannah!!

I just feel that all success we have been experiencing lately is because of the "medicine" that we are on in the clinical trial.  We go back this week and we come off the medicine gradually over the next month.  I don't really know what to expect.   I pray the behaviors we were experiencing BEFORE do not come back full force!!  Praying daily about this!!

So far so good....

Well we, Noah & Mom, went to the store for only a few things, we have had a MAJOR role change in our home the past couple of months; dad used to be a stay at home dad until mom's fibromyalgia left her unable to work a couple of years ago.  Dad had a job then lost it when the economy took the downward, dad did all the shopping and cooking, now dad has a job for about a month now and mom is having to do some of this stuff and she is not used to it (Especially cooking) 

We have speech in a little while and then its off to the Memphis Zoo for a little while (hope it doesn't start to rain).  With dad working we only have one car, so we try to just keep the car one day a week for fuel conservation purposes!!!  It should be a full day for us.

Update on the Vanderbilt visit, we are still on the "placebo/medicine" until our next visit in Feb. then it's the coming off period.  YEAH we are on it for another month (too many GREAT changes not be on the medicine)  It is really difficult to try to make any plans for the next couple of months because we don't know how Noah is going to be, will the old behaviors come back (aggression, spitting, hitting, biting etc.)  There is a Autism Works Conference in St Louis in March I want to attend but will be unable too, since we committed to the clinical trial, we are not going to try to do anything else right now.

Noah was PERFECT at his visit they had to do a blood draw he didn't even flinch but he did tell them, "Hey your stealing my blood"  We all died laughing!!!  We ate breakfast at the hotel restaurant again and he was great.  He ate EVERYTHING (like the Alaskan Bullworm in Spongebob)  4 sausage patties, bowl of cereal, 6 pieces of bacon, biscuit with jelly I had to quit feeding him, I thought he might explode!!  All is well for now, how quickly things change though....

SLEEP something from a past lifetime.....

As you know we are in the clinical trial at Vanderbilt for the new ASD medicine, the ONLY drawback we have seen from the "medicine" is NO SLEEP REQUIRED!!!  Noah never liked to go to sleep like most kids on the Spectrum sleep is  always more difficult with children with Autism.  The thing is EVERYBODY suffers from Noah not sleeping.  I am SO glad that I homeschool them other wise Noah's sister would be sleeping during school.

The "medicine" (I say  that because its a placebo controlled study we might not be on the "medicine")  Once again I feel certain that we are because their have been SO many positive changes in his behavior, his communication, he is trying new foods!!  YES TRYING NEW FOODS!!  We go back next week, Thursday is the appointment.  After this appointment I think we start to withdraw the medicine AHHHH!!!  I am not looking forward to that I am afraid old behaviors will re-surface.  I will keep you posted. 

Things are improving......are they????

Noah has really been full of himself lately, he wanted to show me something on the computer today and he said, “Come on Mom, don’t be shy”  I’m not sure where he picked that up at.  You guys all know how our kids get on a kick, obsessed whatever you want to call it our’s is Super Mario Brothers right now, do you know what that Bowser (he’s bad) has 7 little Koopas, if there is anything that ya’ need to know about Super Mario Brother’s characters, I can probably answer most of your questions, I am also an expert on Spongebob.  

I have been so amazed at Noah’s ability to pick up on emotions lately, first it was the Santa Paws movie, it was a great part of the movie  & he started to cry, he looked at me and asked, “Why am I crying, I’m not sad”  he was very confused; so I started crying too (happy tears) and I explained to him about Happy Tears=)  A couple of night’s ago, sister got in trouble at the dinner table (she snuck some Dr P to drink) so Dad made her give it to him, she started to cry got up and left the table.  Noah’s eyes welled up with tears, he got her glass, went to the kitchen, got the Dr P, and poured her a glass and took it to her, “So she will be happy”  he definitely likes EVERYONE to be happy!! 

I am really thinking he is on the medicine from the study at Vanderbilt, or he has just had a HUGE change in behavior.  From August up till about a month ago he was OUT OF CONTROL!!  I was about to lose my mind.  Everything was a challenge, no one could do anything right.  We walked on egg shells & now he is communicating better, behaving better!!

Crazy Week

What a crazy week its been and it's only Wednesday AHHH!!  We have really great days lately, except for a little door slamming and screaming.  We are much improved with other behaviors though, like biting and hitting.  Yesterday we (I say we and not he because we are in this together) had the mother of all meltdowns, and I do not know why…  I got punched in the face two times, he then he grabbed the hair on the back of my head and started shaking my head, sounds funny now but at the time it WAS NOT FUNNY.  Then he “suckered” me he approached me with his arms open as if to hug me, so stupid me I thought the meltdown was over, HA he punched me in the face. 

We are in the study at Vanderbilt in Nashville for a new medicine to help kids with ASD and their social skills, it's a placebo study thing, he may or MAY NOT be on the medicine.  I think we may be on the medicine because we have some really great things happen lately I will fill you in with some later posts. 

We are a home school family both Noah 9 with autism & Savannah 11 who is neuro-typical are home schooled, this is good & bad we are ALWAYS together, you can see how this would get old.  I will not let Noah EVER attend public school again & am not financially able to send him to a private school so here we are.  I got to go to Target tonight by myself, it was a little strange I have to say.  What a treat to go somewhere with the kids WOW!! 

 It's the little things that mean so much to Autism Families, I really think that we were chosen because we can step back & learn a great deal from this wonderfully made child.  We have SO much love to give no matter what, if we are being hit, bit, kicked,spit on, we take it because we know that there is a reason why & this child is not mean or vindictive he is simply trying to communicate!