Re-Post of What Are M-E-L-T-D-O-W-N-S

M-E-L-T-D-O-W-N-S 

* Massive

* Exasperated

* Loud

* Tiresome

* Destructive

* Oversensitive

* Worn out

* Noisy

* Spontaneous 


 Cynthia

What are M-E-L-T-D-O-W-N-S???

M E L T D O W N S 

* Massive

* Exasperated

* Loud

* Tiresome

* Destructive

* Oversensitive

* Worn out

* Noisy

* Spontaneous 


 Cynthia

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....

Heading to Vanderbilt

We here we go again  back to Nashville for our trip to Vanderbilt.  YEAH!  Noah is still suffering from insomnia that is one of the side effects to the medicine, once again we don't know whether he is on the placebo or the drug, I would bet that he is definitely on the medicine, read some of my previous posts about his progress.  I think this is the visit where we start the withdrawal process, that is going to SUCK!!  He had a meltdown tonight and  beat the crap out of me and bit me twice, he hasn't done that in a while.  I have to be really careful now because he is starting to pick up on others feelings, and I started to cry tonight after the incident, I immediately saw his lip poke out he was getting ready to cry; I changed my expression quickly!!  Keep us in your thoughts was we hit the road tomorrow afternoon!!

Article from Autism Speaks about NEW MEDICINE

 

The next step toward treatment for the core symptoms of autism

June 23, 2011 Autism Speaks

by Chief Science Officer of Autism Speaks, Geraldine Dawson, Ph.D.
I often get the question: How is the research we are funding on single gene disorders, such as Fragile X, relevant to the larger population of individuals with ASD? My answer is that, although autism has many different causes – including single gene mutations, multiple genetic factors, and even environmental factors – it is likely that these causes affect common underlying biological pathways. By studying the “simpler” single gene disorders, especially by studying animal models of these disorders, we can discover these pathways and develop medications that hopefully can help restore the functioning of these pathways.

As you will see in the press release, this strategy is being implemented by Seaside Therapeutics. With the help of funding from Autism Speaks and NIH, Mark Bear and other scientists developed an animal model for Fragile X and discovered that glutamate, an excitatory neurotransmitter, is affected by the Fragile X mutation. An overabundance of glutamate is interfering with the ability of neurons to communicate with each other (synaptic functioning). SeasideTherapeutics then tested a medicine, STX209 (arbaclofen), which helps to restore normal synaptic functioning, in a clinical trial with people with Fragile X. They found encouraging results! The next step, which was launched yesterday, is to test the efficacy of STX209 in individuals with ASD. The hope is that this medicine will improve social behavior and reduce irritability (e.g. aggression, tantrums) in people with ASD.

In the press release Randall L. Carpenter, M.D., President and Chief Executive Officer of Seaside Therapeutics says, “In our open-label Phase 2a study of STX209, we observed significant improvements in social impairment—a core symptom of autism spectrum disorders—including symptoms such as preference to be alone, being withdrawn or isolated, and lack of social reactivity. We are spearheading late-stage development of a drug candidate that has the potential to change the treatment paradigm for autism spectrum disorders—addressing core symptoms—and are truly excited about the prospect of helping patients and their families achieve an improved quality of life.”
Arbaclofen acts by stimulating the release of GABA in the brain. To make an simplified analogy, if we think of glutamate as the accelerator pedal in brain, then GABA is the brake pedal. By reducing glutamate through stimulating GABA receptors, the first clinical trial with people who have Fragile X syndrome demonstrated positive effects on behavior.

In Phase 2b of the trial, 25 sites will conduct a randomized, placebo-controlled trial of arbaclofen, enrolling 150 people with ASD for a total duration of treatment of 12 weeks. For more information about the clinical trial visit http://www.clinicaltrials.gov/ .

We will be sure to keep you informed as this study and other translational research progresses!
Here is the link to the blog:
Autism Speaks Blog

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!