"It's not what caused it...it's what we are going to do about it"
Met with immunologist number one today at Children's. I prepared for the appointment with my 2 inch thick binder, organized by categories of medical, health history, current therapies, etc. Can we say Type A? Or maybe just OCD. :)
Dr. D came in and was very pleasant- did a quick exam with Hunter and then sat down for my parent information. After I gave her the (not so much) brief history, she said, "Well, you certainly have done this before." She listened to all of my concerns related to auto-immune issues and told me that she would not be providing IVIG for Hunter. I explained that that was not my intention- I wanted another opinion on his history and the development of the his disability. I wanted to know if it was worth the chase.
She stopped writing and looked up at me. "As a parent, I feel you. I feel the frustration and the questioning and the need to find an answer. You are the best advocate for your child." I had just blogged about someone telling me this while Paige was in the NICU! She told me that she would be doing all of the things I currently am doing, including writing to authors of articles, contacting researchers, and exhausting all options. She did agree with our hypothesis of the virus/illness starting the spiral of effects that eventually led to an ASD diagnosis. I didn't want her to perceive me as a "band-wagon" type of mother of a child with Autism, one who tries all the hyped therapies, supplements, etc. I wanted her to know that each method we have chosen so far has been after an abundant amount of research.
She went through lab results and agreed with our pediatrician that the levels could just be elevated due to previous exposure. She said the IGM antibodies are difficult to detect, and sometimes give false positives. His IGA was normal, which she would have expected to be off if there was an autoimmune issue. She said if the IGG levels were low, then that would indicate a primary immunodeficiency (and the need for IVIG) or specific clinical conditions.
We talked extensively about IVIG and the potential risks. She countered the procedure with the declaration that PANDAS is still a controversial diagnosis and there is not enough research to document efficacy. I reviewed Dr. K's visit and our steroid trial, and she in the end, agreed that there seems to be a component that caused the breakdown. The factor that tipped the bucket. She told me that she is not a PANDAS expert, has not had much experience in the area, and would only recommend IVIG if Hunter had a history of immunodeficiency. I asked her about the recent Vitilgo, and asked if this could be the start of the downfall for a domino effect of autoimmune issues. She told me honestly, "I don't know. This is the time we watch and carefully observe."
In walking away from this appointment, I took with me one statement that will stick. She said, "The question here is not what caused the Autism, correct? The question is what are we going to do about it?"
As a "fix-it" type of person, I think I have been caught up in the cause and wanting to know the answer of the "why." From day one, Peter and I told ourselves we would be the "why not" family and not ponder over the reasoning. Ultimately, I want to help Hunter to the best of his abilities and I do need to focus on the "doing about it part." Weekly, this includes three days of ABA, five days of school, one day of OT, and constant teaching at home...and attempt to ignore the nagging questions in my mind.
I broke down in tears in her office as she told me, "You are doing the right thing. You need to continue on. You just need to be in the right place." As I thanked her, I told her that I should feel lucky to have healthy children, when she sees so many medically fragile children daily. I told her that I don't worry about the physical part of these autoimmune issues and Autism, but the mental part- I just don't want him to struggle socially in a world that can be so mean.
When we got into the car, I checked my email quickly before leaving the parking lot and found an email from a parent of a child that I had in my first phonology class in the district. I had started this program from the ground up, on a grant from the state, and this little girl and her parents had such a special place in my heart. She had come to me with only vowels and two consonants...and after two years in the program, you could understand her! She validated my career choice and made me realize that I truly loved working with these children who needed a little extra help.
This little girl passed away from a brain tumor two months before Paige was born. I remember it like it was yesterday, thinking how unfair it was for these sweet parents to lose their only child.
Today is the 6th anniversary of her passing. Her father had emailed me with pictures of the vibrant little girl who graced this world for only 5 short years.
Love on your children, give them extra hugs and kisses, and be thankful for all the blessings in your life, no matter if they may occasionally seem like trials. They are actually mercies.
Once again, Laura Story, Blessings, in the link below.
http://www.youtube.com/watch?v=1CSVqHcdhXQ&list=ALHTd1VmZQRNo19MF0fVEzuP4TVy41z-r_&index=1&feature=plcp
Dr. D came in and was very pleasant- did a quick exam with Hunter and then sat down for my parent information. After I gave her the (not so much) brief history, she said, "Well, you certainly have done this before." She listened to all of my concerns related to auto-immune issues and told me that she would not be providing IVIG for Hunter. I explained that that was not my intention- I wanted another opinion on his history and the development of the his disability. I wanted to know if it was worth the chase.
She stopped writing and looked up at me. "As a parent, I feel you. I feel the frustration and the questioning and the need to find an answer. You are the best advocate for your child." I had just blogged about someone telling me this while Paige was in the NICU! She told me that she would be doing all of the things I currently am doing, including writing to authors of articles, contacting researchers, and exhausting all options. She did agree with our hypothesis of the virus/illness starting the spiral of effects that eventually led to an ASD diagnosis. I didn't want her to perceive me as a "band-wagon" type of mother of a child with Autism, one who tries all the hyped therapies, supplements, etc. I wanted her to know that each method we have chosen so far has been after an abundant amount of research.
She went through lab results and agreed with our pediatrician that the levels could just be elevated due to previous exposure. She said the IGM antibodies are difficult to detect, and sometimes give false positives. His IGA was normal, which she would have expected to be off if there was an autoimmune issue. She said if the IGG levels were low, then that would indicate a primary immunodeficiency (and the need for IVIG) or specific clinical conditions.
We talked extensively about IVIG and the potential risks. She countered the procedure with the declaration that PANDAS is still a controversial diagnosis and there is not enough research to document efficacy. I reviewed Dr. K's visit and our steroid trial, and she in the end, agreed that there seems to be a component that caused the breakdown. The factor that tipped the bucket. She told me that she is not a PANDAS expert, has not had much experience in the area, and would only recommend IVIG if Hunter had a history of immunodeficiency. I asked her about the recent Vitilgo, and asked if this could be the start of the downfall for a domino effect of autoimmune issues. She told me honestly, "I don't know. This is the time we watch and carefully observe."
In walking away from this appointment, I took with me one statement that will stick. She said, "The question here is not what caused the Autism, correct? The question is what are we going to do about it?"
As a "fix-it" type of person, I think I have been caught up in the cause and wanting to know the answer of the "why." From day one, Peter and I told ourselves we would be the "why not" family and not ponder over the reasoning. Ultimately, I want to help Hunter to the best of his abilities and I do need to focus on the "doing about it part." Weekly, this includes three days of ABA, five days of school, one day of OT, and constant teaching at home...and attempt to ignore the nagging questions in my mind.
I broke down in tears in her office as she told me, "You are doing the right thing. You need to continue on. You just need to be in the right place." As I thanked her, I told her that I should feel lucky to have healthy children, when she sees so many medically fragile children daily. I told her that I don't worry about the physical part of these autoimmune issues and Autism, but the mental part- I just don't want him to struggle socially in a world that can be so mean.
When we got into the car, I checked my email quickly before leaving the parking lot and found an email from a parent of a child that I had in my first phonology class in the district. I had started this program from the ground up, on a grant from the state, and this little girl and her parents had such a special place in my heart. She had come to me with only vowels and two consonants...and after two years in the program, you could understand her! She validated my career choice and made me realize that I truly loved working with these children who needed a little extra help.
This little girl passed away from a brain tumor two months before Paige was born. I remember it like it was yesterday, thinking how unfair it was for these sweet parents to lose their only child.
Today is the 6th anniversary of her passing. Her father had emailed me with pictures of the vibrant little girl who graced this world for only 5 short years.
Love on your children, give them extra hugs and kisses, and be thankful for all the blessings in your life, no matter if they may occasionally seem like trials. They are actually mercies.
Once again, Laura Story, Blessings, in the link below.
http://www.youtube.com/watch?v=1CSVqHcdhXQ&list=ALHTd1VmZQRNo19MF0fVEzuP4TVy41z-r_&index=1&feature=plcp
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