Monday, October 12, 2009
Another Piece of Her Puzzle
It's here again. That ever gratifying surge of hope and excitement that envelops me whenever I feel like I have uncovered another piece of my sweet daugther's mysterious medical puzzle. It has become my purpose. My number one priority as I am certain that I know more about Avery specific brain and body functions than any one of her many physicians.
I only know a few things for sure. I am sure that Avery's autism and mastocytosis are linked. ( I have read dozens of research studies to lead me to this conclusion.) I am sure that she suffers from excessive neuroinflammation. And I am sure that neuroinflammation has contributed to the whole immune response condition that is Autism. So, what next?
Yesterday I watched Dr. Oz on a news program describe Autism as a neuroinflammatory response. This may not seem like a big deal, but in traditional western medicine, most physicians have not yet ascribed this inflammation as a primary contributor to a child developing Autism. Most physicians have also not made it their mission in life to figure out a way to get their effected child back. Anyway, this led me to my search for natural ways to treat such inflammation. This is WHY hyperbaric oxygen therapy is HELPING Avery. It treats inflammation and improves oxygenation of the brain and other inflamed organs. So what else can we do???
Dr. Oz, and most DAN doctors will tell you to look for certain triggers that cause an inflammatory response. Well, for my daughter, her whole body is an inflammatory response. Mastocytosis, especially extreme cases like Avery, is by definition a constant reaction. So, at all times, her excess of mast cells and mast cell tumors are releasing cytokines, which in excess are neurotoxic in that they create a vicious cycle of inflammation which her body never has the chance to recover from. Inflammation can be a blessing or a blight. It is a critical part of the body’s immune response that in normal circumstances reduces injury and promotes healing. When it goes awry, however, the inflammatory response can lead to serious physical and mental problems. Mental problems like AUTISM.
Now, knowing that almost anything can cause my daughter to have a masto reaction, how can I impede or prevent the inflammatory response in several types of cells outside the central nervous system? This led me to several research studies examining how to treat brain inflammation resulting from other autoimmune disorders such as parkinsons, Alzheimer’s, diabetes, and multiple sclerosis. My research led me to several brand, spankin' new studies that indicate specific flavonoids, luteolin, quercetin and rutin, are reducing inflammation and improving cognitive function in brain inflammation!!!!! Woooo hooooo!
Following my discovery, (at midnight I might add) I immediately found out how to get such flavoniods absorbed into Avery's body, any side effects and so on. I know it seems silly, and by no means do I actually believe we can CURE Autism... but if we can help her brain, even just a little bit, so her quality of life can improve, then I am all for it. I will research until the end of time. It seems like every cell in Avery's body is impacted by Autism. Her central nervous system, her neurotransmitters, her significantly impaired motor, language, social and cognitive skills, her feeding, her sensory system, her health and so on. It is astoundingly overwhelming.
As much as I write on this blog about the unconditional love Avery has shown me, about how Autism has changed us for the better, and how regardless of her capabilities I will love and support her all of my life.... not a minute goes by that I am not aching and desperate to help her. To see that light come back in her eyes that started to dim when she was one and half. Call me crazy. Call me obsessed. Whatever you want... but I am figuring it out. Little by little, one puzzle piece at a time, I am figuring it out. God help me... but mostly, God help her.
For a link to Dr. Oz's description of Autism please go to
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Pardon the intrusion. I found your blog during a search for mast cell disease.
I have systemic mastocytosis and uricartia pigmentosa. I just had the pleasure of attending the annual Mastocytosis Society conference and had the honor of meeting Dr. Luis Escribano. He is from Toledo Spain and is, among other things, researching the connection between autism and mast cell disease.
I understand from other parents I met there that he is incredible accessible - even to us Americans :)
His email is firstname.lastname@example.org.
If you google his name, you can learn more about him.
Wishing you and your beautiful family good health!
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