Thursday, October 30, 2008

Keep Moving Forward!


"Keep Moving Forward!" It is the theme to one of Will's Disney movies' Meet the Robinsons. It is what we try to do. Some days we mope or we cry. The worst times for me is when he is around other kids his age or younger and you can see the differences. It hits home that my child is going to have a harder time in life just living. But still we keep going, we know this is the most important time to see the biggest improvements and so you keep going even when you want to crawl in bed and pull the covers over your head (although Kevin lets me do that some days too).
Some people focus on the cause of their childs Autism and although we try not to do this, since we think it is more productive to focus on the development, it is easy to get frustrated.

It is so hard to stay focused and positive when you are constantly seeing some news show or read some magazine article where a Dr. is telling you that the fact that you think the environment(Vaccines, BPA, toxins, etc) had anything to do with your childs Autism is crazy. Autism used to be 1 in 10,000 kids and now is 1 in 150 kids. This shows you that it is environmental. Genetics don't cause epidemics!! The arrogance of the doctors, the AAP, the CDC, the NIH to think that just because their studies by doctors who are most likely funded by pharmacutical companies say that vaccines are not harmful to children that they are not. That the million of parents who are watching it change their child are wrong. They are so easy to dismiss the fact that so many children are effected by vaccines and so many are healed through biomedical treatments because they don't see their results as "evidence based". It is quite frustrating!! I mean how many times has 'Science' been wrong?? Many by my count.

I will tell you about us. When Kevin and I first started to accept that Will had Autism we were devastated (still some days just as much as the first). I was looking up anything and everything on the Internet and came across this video on youtube.com. Now everything was not exactly the same but we saw enough similarities between Will and her son that her children's success brought us hope. It is where we first heard of a DAN! Doctor and started to learn about the biomedical treatments. I then got Jenny McCarthy's book Louder Than Words and as I read I wept (I say wept instead of cried b/c it was some serious crying :) So many of the things she was writing about was what we were feeling at that time. - By the way, I recommend this book to anyone who knows anyone with Autism, it truly will help you understand their pain and their journey.

The point of this post is mostly because I have a lot of anger right now that I need to get out but it is also so if even one person reads this and is convinced to look into Biomedical for the treatment of their child it is worth it!

BIOMEDICAL is worth looking into! It does not work on every child, this is true, it is not fast and it is expensive but it is worth trying. We are seeing our child do things everyday that we never thought was possible with this diagnosis. I thank God for Dr. Sloan and for Jenny McCarthy, and for the people who even through ridicule have stayed the course on this treatment to heal our children.

Chelation officially started!!

Okay, Dr. Sloan has given us the go ahead!! We are ready to chelate. Will's heavy metal test showed that he has excessive amounts of the following heavy metals in his body: Antimony, Bismuth, Copper, Lead, Nickel, Thallium, and Tungsten. It is possible that he has other metals that are going to be harder to get out of his system so we will know that at a later date.
We are starting with Metal Free a product by Body Health and he will take that for a few weeks and then we will add DMSA- Dimercaptosuccinic Acid and he will take those pills 5 days on 5 days off.
Dr Sloan has chelated many children and has much success with the method that he uses. With IV chelation (Which many parents prefer), you sometimes see a regression before any improvement and honestly I don't think Kevin or I could handle that emotionally right now. You have to try remain hopeful to get through all the work it takes to heal your child, although we do have our days where we wonder 'Why Will?', Why did our sweet baby have to have this disorder. Truly tests your faith (that is an entire different post-not for right now). But we have much faith in Dr. Sloan and will try everything we can to help him improve. Dr. Sloan says we are way ahead of the curve right now and that is very reassuring!!
So, chelation is started as of today and I will keep you updated on the progress it brings!!

Sunday, October 26, 2008

FAQ

Here are some of the questions we are most often asked, in no particular order:

Do you think vaccines caused Will's Autism? I don't know for sure, but I think so. I believe it was some kind of toxin that caused it. Will has Regressive Autism, which means he was hitting all of his milestones and had words in which he lost, all of this happening between 16-18 months. Kevin and I even had taken an 'autism questionnaire' in a parent magazine around when Will was a year old and he passed with flying colors. (Funny, I was relieved at the time, little did I know).

Why don't vaccines hurt all children? Because our children are pre-disposition ed not to be able to handle those toxins. They can not get rid of the heavy metals like other children can. So they stay in his body and ultimately injure his brain.

From Boyd Haley, Professor and Chair of the University of Kentucky Department of Chemistry: "The EPA safe level for mercury exposure from the diet is 0.1 micrograms/2.2 pounds body weight and the vaccines preserved with thimerosal has 12.5 micrograms of mercury or 125 times the EPA safe level. This makes the vaccine exposure safe if your baby weighs 275 pounds." Also, the thimerosal is injected, not ingested, which makes it more toxic, and it is delivered with aluminum that enhances the neurotoxicity...."

What is a DAN! doctor? DAN! stands for Defeat Autism Now! and these doctors follow the protocol that is taught by the Autism Research Institute. Our DAN! Dr. is Dr. Hank Sloan at The Genesis Center. We love him!! It is quite expensive (although Dr. Sloan does only what is necessary and cost effective) and insurance doesn't cover any of it but it is essential for treating Will, so thanks to the help of many of our family members we are pulling it off.

What is Chelation? It is the process of removing toxic heavy metals from the body. Will is going to start chelation next week!!

How did you first know? See post from August 3r.

Why is GF/CF diet help kids with Autism? The GFCF diet is recommended not because of allergy to the proteins in milk and most grains. The theory is that a large % of our kids do not fully break down the proteins casein and gluten into a single amino acid. They for whatever reason only half breakdown the peptides. These peptides have opiate effects in our kids brains. In other words ever time our kids eat casein or gluten it is like they are taking morphine. ( Got this off a board, was the easiest way that I had heard it explained).

Monday, October 13, 2008

We're in the fight!

Because we diagnosed Will at such an early age (Thank you Karen) we have a great opportunity to make great strides in development. They say that there is a window in which biomedical treatments are more beneficial and we are right in the middle of the fight!! See this blurb from http://www.autismtreatment.info/What+Is+Autism.aspx

'The window of opportunity for improvement, progress or "recovery" is most open for an autistic child in these early years between 18 months and 5 or 6 years of age. This does not mean that older children cannot improve. Just that, the younger your child is when you recognize their problem and begin treating it, the most progress is possible.
The
CHAT test (Checklist for Autism in Toddlers) is an excellent tool for both Parents and Health Professionals to use in diagnosing Autism in toddlers and has been found to be invaluable in doing so.'

Currently Will is Gluten, Casein, Soy, Egg, Tomato, and Peanut free since July 5, 2008. He is on multiple supplements that his
DAN! Dr. Sloan has prescribed (see earlier post for list). He is in Speech and Occupational therapy provided by Babies Can't Wait. The next two steps of this fight against Autism is Chelation and Floortime.

We have been giving Will a product by Body Health called
Metal Free and will send his 'sample' into the lab today to see what heavy metals he has in his body. Once these are identified Dr. Sloan will officially start us on Chelation! Kevin and I are really excited! Despite the fact that it is just one more thing that Will will have to endure each day, we are extremely hopeful that we will see benefits!

Also, Saturday we have an appointment with
Dr. Barbara Dunbar at Floortime Atlanta. She comes highly recommended by multiple people, one being our Neurologist Dr. Schub. She will give us a evaluation and send us with a plan on how to use Will's strengths to help him develop.

So, we are in the fight! While we have some days that we feel defeated, overall I think we are on the right track to make huge wins!!

A friend of the family who has an son with Aspergers gave us this bit of wisdom that I really appreciate...
"...we have been chosen to be their cheerleaders. And as "cheerleaders" you cheer if your team is wining or losing."

Sunday, October 5, 2008

Stop Staring People!!

We had kind of a crappy weekend. Daddy is out of town, at Cumberland Island camping with his friends and Grandma, me, and Will all go sick! Will never actually had a fever but you can tell when he doesn't feel good. Lots of banging his head and his chin on anything and everything. Took long naps both Sat/Sun and that is unheard of for him.
So Sun night I decide I am feeling better and I want to take the boys to the park to get some energy out. We play on the slide for a sec and run around the playground and then he was done with that! He saw someone had left their sippy cut out and of course ran straight to it.
Mommy~ "No Will, you have your own drink, this belongs to someone else.
Will ~ Bangs his head on the ground and goes limp so it is difficult for you to pick him up.
Everyone stares.
Then I follow him down the sidewalk and to the water fountain (which by the way was nasty! Had mold or mildew or something gross all over). So I let him turn it on/off for a while. Every time someone wanted a drink (gross!) I had to pull him back and he would bang his head and fall on the ground! People stare.
This is something I am used to and most days I don't even care when people stare but tonight it just bugged me! Poor Taylor only got to play on the playground for about half and hour and I had had it, we were going back home where we can bang our heads in the privacy of our own home!
So the moral of my little rant for the evening is this, when you see a kid that is throwing a fit and you think "what a little brat" or "that child needs a spanking" (all things I have thought of other kids before) just think that there might be something more to the story and have some compassion. Mom has a saying up in her room that she has always tried to teach us and I think it really applies to my rant, "Be kind, for everyone you meet is fighting a hard battle." ~Plato