Friday, January 23, 2009

Clay's Law...

We wanted to put the word out there... This would be humongous for kids like Charlie. Sad that we can get Viagra covered by insurance, but that these Autistic kids get no help.


Dear Utah Autism Advocate!

Autism Speaks is pursuing autism insurance reform in over 20 states across the nation including Utah!

Yesterday, an autism insurance reform bill was introduced in the Utah State legislature. Senate Bill 43, "Clay's Law" sponsored by State Senator Howard A. Stephenson (R-11) will require private healthcare policies to provide coverage of the diagnosis and treatment of autism spectrum disorders. Clay's Law will cover early intensive behavioral therapies and other medically necessary, evidence-based treatments prescribed by an insured's treating physician or psychologist.
There are currently eight states that have passed similar bills across the country, including five states during last year's legislative season: Arizona, Florida, Louisiana, Pennsylvania and Illinois. This is a hot topic in states nationwide and Utah should be proud to be a part of such an important movement!

We need your help to get support for Clay's Law from your State Senator...

1. SEND AN EMAIL TO YOUR STATE SENATOR! Let them know that you support Clay's Law (SB 43), that you need them to support Clay's Law, and that passage of Clay's Law would mean increased access to critical autism therapies and treatments for thousands of children in Utah. We've already written some of the letter for you. All you need to do is add in your own words (optional) and click send. It's that easy!

2. STAY INFORMED ON CLAY'S LAW! Check out the Autism Votes website and sign up today to receive alerts and information pertaining to the autism insurance reform bills. Stay on top of the latest developments throughout the legislative season and get involved!

3. FORWARD THIS TO EVERYONE YOU KNOW! We need everyone's help. If you know other people in Utah that would get involved on behalf of your child, forward them this email and ask them to sign up at This is the perfect answer for anyone who has ever told you, "If there is ever anything I can do to help just ask!" Send to extended family members - aunts, uncles, cousins, grandparents. Send to coworkers, neighbors, therapists, teachers and friends! We need all hands on deck!
For more information on the autism insurance reform initiative in Utah, visit


Thanks everyone for your love and support.

Sunday, January 18, 2009

Charlie makes the newspaper...

Charlie was at therapy the other day and the newspaper folks came to take some pictures for an article they were writing. Charlie and his little buddy Noah were superstars...

Friday, January 16, 2009

Seizures... and hospital pictures.

After thinking the seizures were getting a bit better, Charlie has had some gnarly seizures over the last couple of days so we're back to not knowing what's going on. He had a big one yesterday and another couple today. He's OK but it sucks that the big ones have started again.

Here are the promised pictures from Primary Children's Hospital --

The folks hooking Charlie up to the sensors for the EEG. He didn't like it so much, but he did a pretty decent job considering...

The headdress... He was not happy.

In between the EEG and the MRI we had about 2 hours to blow at Primary Children's. Let's just say it was not easy with a 3 year old who was sleep deprived and fasting... so, this is how we wasted time. Up and down the elevator.

And the result, every time he hit the 'Alarm' button:

Next he went under for the MRI. McGhie's are notoriously sensitive to anesthesia, and our dear Charlie was not any different.

Poor Charlie. Mom waiting for him to wake up.

Trying to get him to wake up by sticking a Popsicle in his mouth... didn't work.

A bit woozy and unsure of what just happened to him once he woke up, but glad no one was going to keep poking him with needles.

Thursday, January 15, 2009

Charlie's First Day (one week later)

As some may be aware, we've signed Charlie up for some intense, one on one therapy. He now attends a 'school' called (Autism Journeys). It is a therapy group dedicated to helping Autistic kids here in Utah. We've wanted to enroll him in therapy at this level for some time, but due to circumstances have not been able to until now. Our families have stepped in and for their help we are and will be forever grateful.

Last week was Charlie's first day. I wanted to post this to set the stage, and then we'll try to keep updates coming on the therapy and how it is working out.


The first day was a little rough. He cried a lot which was expected. I think he thought he was in Nursery or something because we went in a room with toys and shut the door and he threw a fit. We tried to calm him and I gave him hugs but we eventually found that just ignoring him was the only way to stop the tantrum.

It was more of an introductory day for the director to see Charlie's personality and problems firsthand so she could decide what treatments to start with and what methods would work best for him. I think she learned a lot and I was able to share a lot of information with her (it felt good to talk!) that really helped.

I told her some of the biggest problems we are having now like the running away, the hitting, the tantrums, lack of speech, the very short attention span and the destructive behavior at home and anywhere we go. Okay, that was more than a few but I laid a lot of it out on the table. :) She gave me some awesome techniques I can start using immediately and demonstrated how to do them firsthand. It's going to take a lot of energy (which I totally have plenty of) and time but I think the things she showed me are really going to work and will make a huge difference for our family.

The funniest (in a demented sort of way) thing she is thinking about is a helmet for Charlie that we will need to put on him every time he hits himself. He has a big problem with hitting himself in the head and biting himself and I guess the helmet is one of the methods they use to stop that. I don't feel like I'm a mean person but Matt and I had a big laugh at the idea of Charlie wearing a helmet around. I guess one of those laugh or cry things right?

Anyway, we nailed down some things he needs the most in the beginning like working on sitting in a chair and increasing his attention span so that the things like speech therapy will be more beneficial later. I feel really good about it and even though I'm sure everything is going to be exhausting, I think it is going to make a big difference for Charlie...and us. Thank you so much Melissa for telling us about this place.

We are also strongly considering starting Charlie on the Ketogenic Diet. I am really scared but it seems to be our best option right now and our Neurologist is really pushing for it. Here is a little info about it...

"The diet starts in the hospital.
The child is placed on a 24-hour fast and is closely watched to be sure he or she is handling the very real stress of not getting any food during that time.
Once the child begins burning fat for energy instead of glucose (a state called ketosis), the doctors gradually introduce the foods that are part of the diet in amounts that are right for that child.
When the child goes home, the parents continue to carry out the diet at home, weighing every item and making sure that the balance between fat and other nutritional elements is maintained. Doctors and dietitians follow children closely to make sure they're getting enough nutrition and are growing.

Each portion of food must be prepared very carefully by the parents, who often use a gram scale to weigh items exactly.
That's because a tiny mistake in weighing and measuring foods (or if a child finds and eats a few cookie crumbs, or puts anything containing sugar -- including medicines and toothpaste -- in her mouth), can break the diet's effects -- and cause a seizure.

Parents of children on the diet use special paper strips to check the ketone level in the child's urine.
Ketones are the chemicals that the body produces when it burns fat. Parents also test urine weekly for blood, which could be an early sign of kidney stones, a possible side effect of the diet."

You can read more about it at http://

There is a one in three chance the diet will stop the seizures, a one in three chance it will reduce the seizures and a one in three chance that it will do jack squat. The Dr. said they will not do the diet longer than three years on a child because it is not very good for the body.

The good news is that if it does eliminate the seizures, the brain forgets how to have a seizure after a certain period of time (a year or two) and in some cases, you can wean the child off the diet and be seizure free for the rest of thier life. This would be best case scenario and there is about a 1 in 3 chance of this happening. The best odds we've heard in a while. We will probably have to drop off the face of the planet and stay mostly in and around our home to prevent him from accidentally getting a hold of some little piece of food that would blow the diet and we would have to start all over again. The good news is that we aren't able to have much of a social life with the situation now so it won't be that big of a loss. ;)

So there is the full story. We appreciate all of your support more than any of you can know. We love all of you and feel very blessed to have such wonderful family and friends to help us through all of this. Thanks so much for everything.

Steff and Matt

Wednesday, January 7, 2009

Primary Children's Medical Center (PCMC) with Charlie

Yesterday we spent the day at PCMC with Charlie getting some tests. We did an MRI and an EEG.

The MRI scans his brain for any abnormalities. The EEG measures the electric activity that's going on in his dome.

Its a miserable experience to go through, and when I'm less tired I'll post the pics and the process, but by way of update, the tests really didn't give us anything. The MRI came back all good, nothing wrong... The EEG showed the same abnormalities as before... not really any changes.

This is frustrating for us because we were hoping to come up with something that might help us identify the whys, but instead just a lot of the same questions with no answers.