Charlie's First Black Eye

Please let me start by saying I'm going to set the stage for what I'm about to share with you in hopes that you'll all show me a little compassion and understand where I'm coming from while I explain Charlie's first black eye.

First, it's no secret that Charlie is an active little bugger. Anyone who's spent more than ten seconds with him can vouch for that. While his activity levels are on par or exceed those of typical children at his age, his coordination does not. The combination of the two of these elements basically means Charlie is in the injury business.

Second, Charlie is a brute. He eats triple what Winston eats in any given day. He's officially heavier and wears bigger clothes than Winston and they are 22 months apart. I don't get why he's so beefy.



Third, Charlie loves to play physical. He terrorizes Winston with his thug-ish behavior because he's smart enough to understand he can take him. Winston is scrawny. For example, the other day, Charlie gave Winston a little 'prodding' to tease him. This begun the fight. Winston grabbed Charlie's arm and yanked it, Charlie smacked him upside the head and started to run, and then (this is the good part) Winston pounced on Charlie's back and basically rode him piggy back beating on him, while Charlie ran away, carrying Winston on his back, laughing. Hard not to laugh while you're trying to discipline. Alas, I digress.

So, this being said, yesterday Charlie was in a physical mood so that's when good old Dad is supposed to step in and rough house for a little while to help settle him down. And step in I did. We rolled around doing 'steamroller,' did flipsie-daisies, practiced some linebacker tackles, worked on our wrestling starts, etc. Well, after playing around for a while, I decided it was time to wind down, but thought one more good physical maneuver would round us out... and that's when it happened. Heads collided and one was softer than the other one. The result -- a black eye.

Picture below...

























Almost there...




























Wait for it...






















Ta Da!





Yes, Charlie doled out his first black eye... to his Dad. And yeah, I know, it's not all that bad, but c'mon, all Dad is asking for is a little sympathy. Although, I imagine it was pretty amusing for Steff to come downstairs and see Dad rolling around on the ground, clutching his face, and Charlie standing by trying to console him. Maybe that explains why she was laughing...

Today makes...

EIGHT days seizure free. We only have him on Vitamin B12 and folocal. Thanks so much for all the prayers and support! Keep praying that it will last!

Charlie Update - Hope is kindled

We thought it would be appropriate to follow up to the last post with a current status. We've started to see some positive motion with the seizures.

About a month ago we started to carefully document what meds we were giving Charlie, his daily mood, and the number of seizures he was having. For those who may not know, Charlie has two primary types of seizures: clusters of petite mal seizures (http://www.mayoclinic.com/health/petit-mal-seizure/DS00216), and grand mal seizures(http://www.mayoclinic.com/health/grand-mal-seizure/ds00222).

We recently took the data we've collected and graphed it out to look for trends in what was happening with poor Charlie. I thought this was interesting and so we share...



As we graphed this, we saw three phases occur as we changed meds, etc.

1. Previous - 3/19: Full Meds - This is pretty much what was happening on the full medicine regiment since initiated (over 6 months ago). He was having 1-3 seizures a day of both varieties. His mood was up and down. His sleep patterns were all over the board and there was very little stability. This is what prompted us to just drop everything and start over so we could figure out what was going on with him...

2. 3/20 - 3/31: No Meds - Once we took him off the meds, the massive seizures ensued. He was have major Grand Mal seizures many times a day. These seizures were more severe than we've ever seen with full body convulsions lasting between 30 seconds to 2 minutes. Also during this time we saw an almost total loss of speech. When he'd have the big ones, sometimes he'd sleep for 3-4 hours afterwords. Someone who had seizures likened the physical toll of a Grand Mal to running a marathon. Despite the physical toll, he was very happy between seizures.

3. 4/1 - current: Started back with the first med, B12 shots. It was a toss up which med to start with. We talked about it and felt like the B12 shots were our best option, so we're starting out light. We're doing a shot every 5 days and since starting those shots, we've only seen one cluster of 35 Petite Mal seizures in the last 9 days. In this time we've seen his verbal communication returning, which is very positive. The interesting dynamic you can also pick out of the graph is that his mood correlates with the Grand Mal seizures. When he's not having seizures, he's more grumpy than normal and starts displaying behavioral issues like hitting head, tantrums, etc. We're still working to determine if it is behavioral or if there is pain/headaches, etc. Many seizure victims have correlated headaches and migranes to the seizures, so occasionally we give him Motrin, in case that is the reality, and he is happy. This sorta makes us think there's some pain/pressure that builds up that the seizures release, and when not having them, it is painful. Such a double-edged sword.

Anyways, we wanted to share the update. We're hopeful that we can keep this streak alive and keep him seizure free. It would be the answer to countless prayers, blessings and collective fasting. We appreciate all those who have taken part and continue to act on Charlie's behalf. We are too grateful to ever appropriately communicate our love and thanks.

Chuckles Update

Apologies once again for the long time in between updates.

Over the last little while we've been working with different combinations of meds, etc. As mentioned in a previous post, we started with the vitamin B12 shots. We actually started to see some positive results with the shots over the first couple of weeks, but in the last few weeks things have started deteriorating quickly. Charlie's seizures have dropped in frequency but increased in intensity. He's been having 2-3 Grand Mal seizures a day, more powerful and involved than we've ever before seen. These new seizures are accompanied by severe convulsions and in some cases he's not breathing for up to 30 seconds. After these seizures, which last between 30 seconds and 3 minutes, he is exhausted. He'll typically sleep between 2-4 hours after a seizure. People who have these types of seizures compare the physical exertion to running a marathon. They're pretty intense.

In the interest of trying to kick these, we've felt like we should step back from all the meds he's on and try to establish a baseline. It's been over a year since we've seen what the seizures are like without any meds in his system, so we've decided to go med-free for a week or so and see where we're we stand. From here, we're going to start playing with the meds one at a time to carefully gauge what sort of effect they are having on the seizures and the autism behaviors.

We'll keep you all posted.

These are a few of Chuck's favorite things

Charlie has a thing for enclosed places. He loves to get his blanket and snuggle down in a box or bucket or even on the floor inside his little playhouse.

We got him this swing for Christmas and Matt just got around to hanging it in the kid's room (being laid off has it's benefits!). Charlie LOVES it! He loves swinging and loves being all closed in so this swing is pretty much his dream come true. It couldn't have come at a better time because he's had a tough couple of weeks and it really soothes him to get in the swing and feel safe and cozy.

He loves getting in this bucket and drinking his medicine laced juice. (please pretend he isn't STILL using a bottle. Thanks)


He also likes to relax in this little plastic bin.



One of the only times we can get Charlie to hold still is when we lightly scratch his body. He completely freezes and gets little goose bumps all over his body.

He likes having his arms scratched so much that he will rotate them around to make sure you don't miss any spots. The cutest thing is when you do it to his tummy...every time we do it, his mouth will drop wide open and stay open until you stop.

He loves his daddy. He was so tired here and ready for bed but we couldn't put him down until he finished drinking the medicine in his bottle. He fell asleep leaning against Matt. So sweet.

Charlie loves to roughhouse with anyone who is willing. Good thing he has a big brother and Papa who enjoy it almost as much as him.

It's been a rocky road but we sure love this little guy and he's worth every bump!

Meet your Representitive - Spanish Fork

For anyone interested, this is happening tomorrow morning.

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I'd like to invite any who are interested to a Meet your Legislators town
meeting this coming Saturday, February 21 from 7:30-9:00 a.m. We will meet
at the Spanish Fork City Hall - 40 S. Main Street. Joining me will be Sen.
Dave Hinkins and Rep. Francis Gibson.

We look forward to discussing the 2009 General Session and to answering any
questions. See you there.

Rep. Mike Morley

Clay's Law - One Round Passed!...Six To Go

The kids by one of the signs as we waited almost 2 hours out in the hall to hear the final result of the votes.

The kids outside one of the House Building after Clay's Law was passed by the Health and Human Services Senate Sub Committee.

Thursday morning, I hauled myself out of bed at 5:30am and got myself and the two kids ready and drove up to the Capital Building in SLC. We went up to the hearing for Clay's Law by the Health and Human Services Senate Sub Committee. I got there a few minutes late due to the wonderful snow and traffic to find the room packed with people dressed in red (they asked all those supporting the law to wear red). Someone offered to try and squeeze me in the back with Charlie in his stroller but I decided we better hang in the hall/foyer. There were several other parents out there with their children and a lot more by the end of the almost 2 hour hearing.

It was an interesting and comforting experience standing out in the hall repeatedly spinning Charlie around in his stroller or taking short walks and observing the other parents with their children. I struggled to hold the tears back the entire time. I watched two parents taking turns walking with their autistic son up the two flights of stairs and riding down the elevator over and over and over. The other one would go in and listen to the hearing for a while and then come out and they would switch. I saw others struggling with their kids with the oh so familiar look of exhaustion on their faces. Charlie let out his well known "chirps" the whole meeting and instead of disapproving stares or questioning looks, I got sympathetic smiles and a room full of understanding faces. I felt a sense of belonging that I haven't felt in a long time. I kept saying small prayers that the committee members hearts would be softened as they looked out at these desperate parents and kids and that they would have the desire to help us.

There was also a wonderful teenage boy there who was the older brother of an autistic boy. He played with and entertained Winston and a few other little kids almost the entire meeting. It was such a blessing because Winston was bored within the first two minutes of being there. It was a relief to be able to focus most of my attention on keeping Charlie from throwing any more tantrums than necessary. :)

Despite the long wait, I didn't see anyone leave. If passed, this law would give so many families and children help and a hope that is really hard to hold on to with the very, very limited resources for these kids. They kept the double doors open into the room holding the hearing and people were crowded in them and out in the hall but I was able to sneak peeks here and there to try and figure out what was happening. Finally, a loud cheer erupted and everyone was standing and clapping. People started pouring out of the room and there were not many dry eyes in the crowd. I knew they had voted to pass Clay's Law and I couldn't hold back my emotions anymore. I cried right along with the rest and said a little prayer of thanks.

This was only the first of 7 hearings that the law needs to go through and get passed to go into effect starting in July of 2010. Matt is going to write more about what comes next. I'd just like to thank all of you who have helped us out so far and I beg that you will help us get this passed. Matt will post info on how you can help. Please help us give these kids a chance.

Update on Chuckles.

Its been some time since we've managed to get an update out here. Apologies for that.

Things are moving along with Charlie. Here's where we're at:

We've been slowly pulling him back off his seizure meds and watching if there's any effect. So far, we've not seen much difference. He's still having seizures multiple times a day of varying intensity. We figure, if there's no diff between taking the meds and not taking the meds, then why keep filling him full of the stuff.

We just had an appt with his Bio-med doctor, Dr. Humphries, and we've moved on to giving him B-12 shots. This is the next step for him in his bio-med therapy. Right now he's on an assortment of meds (Vitamin C, fish oil, aceto-catmine, child essence, fair biotic, melatonin, and one other I can't think of the name) from this dr. Its taken several weeks to build him up to that. The purpose of these are to help level off some of the internal checks and balances of the body.

This next step is where people that have used this therapy have really started to see some cognitive progress with their kids. The vitamin B-12 shots are given to him every three days. Mom and Dad (mostly Dad because it freaks Mom out) get to give him the shots. People that have done this have said they have seen progress in as little time as two weeks, but the dr says two months.

If this does work, it will really open up Charlie's mind to be able to absorb the teaching that he's getting at an accelerated rate.

In the meantime, we're also considering some meds to help him sleep better at night. Many people have mentioned that they saw marked improvement in their children once they started to sleep. In order for the body to store knowledge and learning into long term memory, the mind has to hit a REM cycle during sleep. It usually takes about 90 minutes of continuous sleep to hit this cycle. We don't think Charlie gets to that point very often.

We've not had a sleep study done on Charlie, but based on what we can hear in the room next door, we think he gets between 4-6 hours of sleep a night, sometimes less. Hi sleep is constantly interrupted. We'll hear him at 10pm when we're down relaxing, at midnight, at 3am, and by 6am he's usually up and yelling at us. We've actually considered installing a infrared web cam in his room, so we can observe his sleep patterns, but haven't done it yet. Maybe someday I'll figure it out. :-)

So, the plan for now is to get him a couple of weeks into the B-12 shots to make sure he's tolerating them, then we'll move onto the sleep meds. In the meantime, we're trying to prep our house for the oncoming diet... We're installing magnetic locks on every cupboard/drawer in the house, and replacing our pantry shelves with cupboards.

If anyone is asking why we go so slow with the meds, there is a reason. Charlie has tried so many and had such wild and varying reactions to them, we take them one at a time and watch his behavior to see how it affects him. If its a bad reaction, we back him off.

So, good times.

I'm not sure how much sense this made. Its taken me a while to write it between doing a bunch of other stuff.

GOOD NEWS: Just heard Clay's Law passed!!!!!! Steff was up there so I'll let her fill everyone in later on. YAHOOOO!!!!!!

Comments... turned on.

When we started this blog, we just wanted to start spreading the word on things that we're doing and Charlie's progress and generally keep people in the loop. As we've shared our challenges, a lot of people have found great helps and resources that they've wanted to share with us but have not had a good way. For that reason, we're going to open the comments.

If you have something you'd like to share with us or even just randomly spout off, feel free. We're always open to humor. Fact is, we embrace it. We'll even accept the occasional 'you guys are demented' type comments, but we ask that you keep them to a minimum.

We feel like we've truly been blessed by the people that surround us everyday, from family to neighbors and friends. We couldn't do this without you. You're there to help and strengthen us at every point and it means the world to us.

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.




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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...
HOW CAN YOU HELP?

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 www.autismvotes.org. 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 www.AutismVotes.org/Utah.

*************************

Thanks everyone for your love and support.

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... http://www.heraldextra.com/content/view/296530/17/

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.

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://http://www.epilepsyfoundation.org/about/treatment/ketogenicdiet/

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

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.