Contacting the Big Wigs
After reading the article from my friend Jenny (on a previous posting) about the autoimmune connection with Autism, I reached out to two of the researchers that were quoted in the NY times. I figured I had nothing to lose- even if they didn't reply, it was worth a shot!
Here's the link to the article in case you missed it the first time.
http://www.nytimes.com/2012/08/26/opinion/sunday/immune-disorders-and-autism.html?_r=2&pagewanted=all
To my surprise and my joy, they both responded within the next 24 hours! I so appreciated their responses, so I will paste them below. Here's the first one from Kevin Becker, a geneticist at the National Institutes of Health.
Thank you for your note. You certainly are engaged in the issues of autism and related things.
I am but a lowly researcher that works on many things much of which is theoretical. Most of my background has to do with the genetics and other features of autoimmune and allergic disorders. I don't know anything about clinical medicine.
These people might be closer to work related to patients. Or they may know people to contact.
Andrew Zimmerman MD
http://www.massgeneral.org/neurology/doctors/doctor.aspx?id=18782
Paul Ashwood PhD
http://www.ucdmc.ucdavis.edu/medmicro/staff/ashwood.html
Judy Van der Water PhD
http://www.ucdmc.ucdavis.edu/mindinstitute/ourteam/faculty/vandewater.html
Good luck in your journey.
Kevin Becker
p.s. is your father's family Irish? There is an increased incidence of celiac in people of Irish descent...
-Interesting comment! Lots of Irish on Hunter's family tree, from both sides.
Here's the second email, from Dr. William Parker, at Duke University.
Dear Erika,
Thank you very much for your note.
Main stream medicine is just now beginning to awaken to the immune/brain connection in children. We do not yet have studies running at Duke. However, there is support for people who are experiencing the sorts of things you are seeing in your son.
I would suggest contacting Laura Bono. She is a member of the group SafeMinds and can tell you about available resources for children with immune-brain dysregulation.
Laura's E-mail address is ldbono@nc.rr.com.
It is my goal for future generations to prevent the cascade reaction you saw in your son...but medicine will need to be bold to accomplish this. That is our focus in the lab at tje moment.
Sincerely,
William
Here's the link to the article in case you missed it the first time.
http://www.nytimes.com/2012/08/26/opinion/sunday/immune-disorders-and-autism.html?_r=2&pagewanted=all
To my surprise and my joy, they both responded within the next 24 hours! I so appreciated their responses, so I will paste them below. Here's the first one from Kevin Becker, a geneticist at the National Institutes of Health.
RE: Article in NY times
FROM:
Thank you for your note. You certainly are engaged in the issues of autism and related things.
I am but a lowly researcher that works on many things much of which is theoretical. Most of my background has to do with the genetics and other features of autoimmune and allergic disorders. I don't know anything about clinical medicine.
These people might be closer to work related to patients. Or they may know people to contact.
Andrew Zimmerman MD
http://www.massgeneral.org/neurology/doctors/doctor.aspx?id=18782
Paul Ashwood PhD
http://www.ucdmc.ucdavis.edu/medmicro/staff/ashwood.html
Judy Van der Water PhD
http://www.ucdmc.ucdavis.edu/mindinstitute/ourteam/faculty/vandewater.html
Good luck in your journey.
Kevin Becker
p.s. is your father's family Irish? There is an increased incidence of celiac in people of Irish descent...
-Interesting comment! Lots of Irish on Hunter's family tree, from both sides.
Here's the second email, from Dr. William Parker, at Duke University.
Dear Erika,
Thank you very much for your note.
Main stream medicine is just now beginning to awaken to the immune/brain connection in children. We do not yet have studies running at Duke. However, there is support for people who are experiencing the sorts of things you are seeing in your son.
I would suggest contacting Laura Bono. She is a member of the group SafeMinds and can tell you about available resources for children with immune-brain dysregulation.
Laura's E-mail address is ldbono@nc.rr.com.
It is my goal for future generations to prevent the cascade reaction you saw in your son...but medicine will need to be bold to accomplish this. That is our focus in the lab at tje moment.
Sincerely,
William
My original email...
Dear Dr. Parker-
A good friend sent an article my way, which described the autoimmune response/Autism connection.
My son is this child.
He contracted a virus at 17 months, reacted to the prescribed antibiotic, an started an eye blinking viral tic the day the steroids stopped (which were prescribed to combat the reaction). He started toe walking the next week. Sensory issues began to develop, including clothing irritations, noise sensitivities, and then arm flapping. My son was completely typically developing prior to this virus. I am a speech pathologist and work with children on the spectrum- my son had 22 words at one year of age and was social beyond belief. His language has never regressed, but his pragmatics and OCD tendencies have taken over the child I once knew. This past December, he was diagnosed by Children's with PDD-NOS.
I am contacting you because I am on a journey to heal my son. I have believed since day one that he had an autoimmune response. Since getting sick, he has developed eczema, a gluten sensitivity (genetic testing revealed a category 8 excessive risk for celiac, as my father has celiac), and now diagnosed with Vitiligo (an autoimmune skin disorder).
We are contemplating IVIG due to the belief that PANDAS could play a role. My blog is:https://iifihadamagicwand.blogspot.com for more information.
It will give you a more in-depth look into the history and development of my son's autoimmune response.
With a family history of many autoimmune disorders, I would be most grateful for any advice or information that would assist me in helping my son.
Thank you for your time and consideration-
My son is this child.
He contracted a virus at 17 months, reacted to the prescribed antibiotic, an started an eye blinking viral tic the day the steroids stopped (which were prescribed to combat the reaction). He started toe walking the next week. Sensory issues began to develop, including clothing irritations, noise sensitivities, and then arm flapping. My son was completely typically developing prior to this virus. I am a speech pathologist and work with children on the spectrum- my son had 22 words at one year of age and was social beyond belief. His language has never regressed, but his pragmatics and OCD tendencies have taken over the child I once knew. This past December, he was diagnosed by Children's with PDD-NOS.
I am contacting you because I am on a journey to heal my son. I have believed since day one that he had an autoimmune response. Since getting sick, he has developed eczema, a gluten sensitivity (genetic testing revealed a category 8 excessive risk for celiac, as my father has celiac), and now diagnosed with Vitiligo (an autoimmune skin disorder).
We are contemplating IVIG due to the belief that PANDAS could play a role. My blog is:https://iifihadamagicwand.blogspot.com for more information.
It will give you a more in-depth look into the history and development of my son's autoimmune response.
With a family history of many autoimmune disorders, I would be most grateful for any advice or information that would assist me in helping my son.
Thank you for your time and consideration-
Adding to the never-ending to-do list...contact the recommended professionals above! Tomorrow we meet with a pediatric immunologist at Children's for a second opinion. My pediatrician has already briefed her on our situation (they attended residency together) and she had indicated that she would not recommend IVIG, but I am still eager to present our facts and information and see if she has any advice for us. Saying a prayer that at least some questions will be answered and that I will leave the appointment with more knowledge than when I went in. Third opinion appointment with another pediatric immunologist set for Sept. 24th.
The journey continues.
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