Immunologist Round Two
Met with Dr. W today for a third opinion on the PANDAS suggested by Dr. K in Chicago and to review the autoimmune components involved in Hunter's progression of symptoms. Let's see if I can make sense of the vast amount of information thrown at me in a forty minute consult.
Dr. W is a very conservative, respected immunologist in the area. He has opened two practices now, due to the need and growth in his area of expertise. A mother of a child at Hunter's OT had recommended him, and my pediatrician actually knew him as well, so thought he would be a good resource.
After I presented my health history and background information, he told me the following (in summary): "Your story is very compelling. I don't doubt the progression and the factors involved in the incident. There are triggering events which can be shown to be etiologic for the cause of problems. However, sometimes we can't decide which came first. A first event could occur after a significant health event (he gave the example of MS) and the disease erupts. Could it be coincidental? In this case, likely not, but there have been cases where this is true. I do believe that the viral infection, not the steroid nor the antibiotic reaction, was the trigger for the progression of problems. However, is there ongoing inflammation? We aren't sure."
He then approached the subject of PANDAS. "I am a believer in the neurological problems that are associated with strep throat, but they also go away when the strep is gone. With your son, the problems remain constant. It's an uncommon issue that is controversial." He went on to explain that there are "atypical" diagnoses for many diseases- but to take another step away from an already controversial issue (in the subject of PANDAS) and say "atypical PANDAS'- that did not sit comfortably with him. He reiterated the fact that we never had confirmation of the initial type of infection he had at 17 months. The NIH believes in the pharmaceutical therapy to treat Tics, but there is no credible scientific evidence to support IVIG and PANDAS.
He said one way to determine if the steroid burst was truly effective was to do a blind placebo control trial, in which they would blindly give us placebos as well as steroids and compare our notes. Peter and I had just talked recently about the steroid burst and had asked ourselves if we imagined some of the changes that we saw.
Did we want to believe so badly... that his "changes" were not as significant as we had imagined?
Dr. W did bring light to to the visit. Even though my hopes had been crushed that he truly was a PANDAS kiddo, he followed along with my autoimmune theory and thought aloud.
"If we have your son follow a neurologist (the same one who my pediatrician had recommended at Children's, Dr. E), a respected, experienced, expert neurologist, who determines that there is ongoing case of autoimmune inflammation, either determined through a spinal tap or a brain MRI, and there is RATIONAL SCIENTIFIC evidence to support this information, then I would be on board with treating the inflammation with immunoglobin. The Vitiligo can sometimes be indicative of an increased risk for autoimmune disorders like arthritis, etc, but it can also stand alone. But if there is truly an autoimmune disorder, then we will treat it."
I felt my heart skip a beat and wonder if this was the road leading me ahead in the right direction this time. Not the road that has construction, detours, and congestion, but the straight and arrow path.
Thinking back to the autoimmune/Autism connection article and the issues that have since developed since his initial insult...could it all be related to inflammation in his little brain?
I don't understand everything about the makeup of the brain, even though I sat through three neurology classes in college and grad school and should know if inflammation can change on a daily basis. However, from a clinical side, it makes complete sense. Today was an incredible day for Hunter. Great eye contact, reciprocal conversation, expressing his want to compete on a team like Paige, giving me so many hugs and kisses...and deep down I know that tomorrow morning he could wake up and have three fits before we walk out of the door and not comply with directions at school and take his clothes off during class when the classroom gets too noisy.
Autism is defined by the Autism Society Of America (ASA) as "a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills.
And with that definition, on to the neurologist.
Dr. W is a very conservative, respected immunologist in the area. He has opened two practices now, due to the need and growth in his area of expertise. A mother of a child at Hunter's OT had recommended him, and my pediatrician actually knew him as well, so thought he would be a good resource.
After I presented my health history and background information, he told me the following (in summary): "Your story is very compelling. I don't doubt the progression and the factors involved in the incident. There are triggering events which can be shown to be etiologic for the cause of problems. However, sometimes we can't decide which came first. A first event could occur after a significant health event (he gave the example of MS) and the disease erupts. Could it be coincidental? In this case, likely not, but there have been cases where this is true. I do believe that the viral infection, not the steroid nor the antibiotic reaction, was the trigger for the progression of problems. However, is there ongoing inflammation? We aren't sure."
He then approached the subject of PANDAS. "I am a believer in the neurological problems that are associated with strep throat, but they also go away when the strep is gone. With your son, the problems remain constant. It's an uncommon issue that is controversial." He went on to explain that there are "atypical" diagnoses for many diseases- but to take another step away from an already controversial issue (in the subject of PANDAS) and say "atypical PANDAS'- that did not sit comfortably with him. He reiterated the fact that we never had confirmation of the initial type of infection he had at 17 months. The NIH believes in the pharmaceutical therapy to treat Tics, but there is no credible scientific evidence to support IVIG and PANDAS.
He said one way to determine if the steroid burst was truly effective was to do a blind placebo control trial, in which they would blindly give us placebos as well as steroids and compare our notes. Peter and I had just talked recently about the steroid burst and had asked ourselves if we imagined some of the changes that we saw.
Did we want to believe so badly... that his "changes" were not as significant as we had imagined?
Dr. W did bring light to to the visit. Even though my hopes had been crushed that he truly was a PANDAS kiddo, he followed along with my autoimmune theory and thought aloud.
"If we have your son follow a neurologist (the same one who my pediatrician had recommended at Children's, Dr. E), a respected, experienced, expert neurologist, who determines that there is ongoing case of autoimmune inflammation, either determined through a spinal tap or a brain MRI, and there is RATIONAL SCIENTIFIC evidence to support this information, then I would be on board with treating the inflammation with immunoglobin. The Vitiligo can sometimes be indicative of an increased risk for autoimmune disorders like arthritis, etc, but it can also stand alone. But if there is truly an autoimmune disorder, then we will treat it."
I felt my heart skip a beat and wonder if this was the road leading me ahead in the right direction this time. Not the road that has construction, detours, and congestion, but the straight and arrow path.
Thinking back to the autoimmune/Autism connection article and the issues that have since developed since his initial insult...could it all be related to inflammation in his little brain?
I don't understand everything about the makeup of the brain, even though I sat through three neurology classes in college and grad school and should know if inflammation can change on a daily basis. However, from a clinical side, it makes complete sense. Today was an incredible day for Hunter. Great eye contact, reciprocal conversation, expressing his want to compete on a team like Paige, giving me so many hugs and kisses...and deep down I know that tomorrow morning he could wake up and have three fits before we walk out of the door and not comply with directions at school and take his clothes off during class when the classroom gets too noisy.
Autism is defined by the Autism Society Of America (ASA) as "a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills.
And with that definition, on to the neurologist.
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