Yesterday we took the kids to play at the mall, after a lot of running around we started walking and we let go of Liam's hands. To our surprise he did not take off, he walked ahead of us and always listening when told to wait. After walking we sat at the food court to feed the kids, Liam sat at the chair without being held and ate ( note that Liam does not eat by himself), when finished he stood up and stayed around the table playing with his toy, again without taking off.
We were so happy that little changes are happening, this would not be possible 6 months ago.
My kids are my heroes!
Friday, February 27, 2009
Tuesday, February 17, 2009
Ups and downs
When we started the gf/cf diet with the kids we did not know exactly what to expect. One week after removing dairy and gluten from Liam he started making better eye contact and his therapist from the early intervention program started reporting great changes. But as it happens with every person that is going through a withdrawal, Liam had a very bad week after 2 weeks on the diet. He had fever, was extremely agitated, could not sleep and had terrible tantrums. I knew this could happen, I just didn't know how bad it would be.
We started reading books, doing Internet research and everything possible to learn more about the Biomedical treatment for Autism. That was when we found Karyn Seroussi's book, her story and her fight to get her son better. We went against the doctors who told us that we would have a child for the rest of our lives and that there was nothing to do other than therapies and love.
Now after almost 2 years after beginning treatment I have the joy of hearing my kids sing, play, talk to each other, call me mommy and as strange as it may sound it is a relief to hear them cry when they are hurt ( most autistic kids don't show signs of pain) and be able to tell me where it hurts.
Some days they interact better than others, talk more, but I know I have to be patient. The road to recovery can be really bumpy, it can send you up and down, but love, support and a very good sense of humor will get us there.
We started reading books, doing Internet research and everything possible to learn more about the Biomedical treatment for Autism. That was when we found Karyn Seroussi's book, her story and her fight to get her son better. We went against the doctors who told us that we would have a child for the rest of our lives and that there was nothing to do other than therapies and love.
Now after almost 2 years after beginning treatment I have the joy of hearing my kids sing, play, talk to each other, call me mommy and as strange as it may sound it is a relief to hear them cry when they are hurt ( most autistic kids don't show signs of pain) and be able to tell me where it hurts.
Some days they interact better than others, talk more, but I know I have to be patient. The road to recovery can be really bumpy, it can send you up and down, but love, support and a very good sense of humor will get us there.
Sunday, February 15, 2009
Everyday a new surprise!
As I lay on the floor playing with Kevin I started asking him where his eyes were, I knew he could point to it but he surprised me saying eyes, nose, mouth, head and ears!
That is comming from an autistic boy who is 3 years old and didn't have a word until 5 months ago. He knows his words have the power to make me understand what he wants and he is using them more and more and trying to say it better every time. He is my super-hero!
Friday, February 13, 2009
Internet groups
To me one of the most importants things is stay updated. One way I found to do that is participating in online groups, where we can find parents just like us sharing their experience. One great group I belong to is http://groups.yahoo.com/group/mb12valtrex/
There are parents of fully recovered kids in the group and they have great knowledge of the DAN! Protocol and are always willing to help new parents
Leaky Gut
Leaky Gut is is an excessively porous intestinal wall. A damaged gut wall allows large molecules to escape into the bloodstream, one way in which improperly digested peptides pass into the bloodstream and then cross the blood-brain barrier. If these peptides have opioid activity, neurological problems could result.
From The Heart
I am trully sorry bloggers, parents and friends. When I started writing this blog I told myself that I would write everyday, but unfortunatelly I can't do that.
I said on my last post that the next would be about Leaky gut, a condition that affects most autistic kids and people that suffer from Celiac Disease. As I sit here staring at my keybord trying to find my words, all I can think of is how am I ging to do that? So I thought a little harder and something struck me. I am not a reporter and I am not a writer but I am a mother and all I want to do is help parents understand a little bit more about our kids's condition. One way I found was to write an easy to understand post, without the use of many complicated words ( I can leave that to the medical sites) and just write about my own experience. From now on I will let my heart do the talking...
I said on my last post that the next would be about Leaky gut, a condition that affects most autistic kids and people that suffer from Celiac Disease. As I sit here staring at my keybord trying to find my words, all I can think of is how am I ging to do that? So I thought a little harder and something struck me. I am not a reporter and I am not a writer but I am a mother and all I want to do is help parents understand a little bit more about our kids's condition. One way I found was to write an easy to understand post, without the use of many complicated words ( I can leave that to the medical sites) and just write about my own experience. From now on I will let my heart do the talking...
Thursday, February 5, 2009
Gluten-free / Casein-free
A dietary intervention is the first approach when starting the biomedical treatment.
As Dr. Paul Shattock found in his study a high percentage of people with autism appear to have elevated levels of substances with properties similar to those expected from opioid peptides reserchers presumed they resulted from the imcomplete break down of certain foods.
Proteins are long chains of amino acids. Normally, intestinal enzymes are responsible for digesting them, braking the bonds that connect the amino acids. It is believed that changes in DNA can result in specific enzymes being unable to do their work.
The enzymes have an active site into wich fits the protein it is designed to digest. If through genetic mutation an enzyme is altered, the protein no longer fits in its active site. This leaves amino acids bound to short chains called peptides. The most common proteins known to have the opioid effect when broken down into peptides are gluten and casein.
Next post will be about Leaky Gut. It will expalain better why it is beneficial to implement the gluten-free/casein-free diet.
As Dr. Paul Shattock found in his study a high percentage of people with autism appear to have elevated levels of substances with properties similar to those expected from opioid peptides reserchers presumed they resulted from the imcomplete break down of certain foods.
Proteins are long chains of amino acids. Normally, intestinal enzymes are responsible for digesting them, braking the bonds that connect the amino acids. It is believed that changes in DNA can result in specific enzymes being unable to do their work.
The enzymes have an active site into wich fits the protein it is designed to digest. If through genetic mutation an enzyme is altered, the protein no longer fits in its active site. This leaves amino acids bound to short chains called peptides. The most common proteins known to have the opioid effect when broken down into peptides are gluten and casein.
Next post will be about Leaky Gut. It will expalain better why it is beneficial to implement the gluten-free/casein-free diet.
My kids are also taking bethanechol, but their reaction is not the same as the boy in the post below. Since starting treatment with Dr. Megson the boys got better in a lot of different ways. Of course it was overwhelming, we left the office with a load of new information and supplements to give, and I know that everything is working together.
Dr. Mary Megson is our sons DAN! Doctor. She is located in Richmond, Virginia.
This is one of her papers.
http://www.whale.to/v/megson.html
This is one of her papers.
http://www.whale.to/v/megson.html
To all parents searching for answers to a lot of questions after a diagnosis.
As a parent of two boys diagnosed with autism and on the path to recovery, I can share some of my knowledge, experience and give support and information to try to make the journey easier (yeah! like that is possible!!) And one thing that is really important is to have a sense of humor!
After almost two years after starting the biomedical aproach with my kids I have learned to laugh, cry, be mad, angry and have felt everything that comes with autism. Guilt? That too. But I also learned that it is not my fault.
I will try to post something new everyday and let you know what I am doing with my kids.
Autism recovery is possible!
See you on the next post.
Subscribe to:
Posts (Atom)
