Interlocking the puzzle with Infectious Disease
After Hunter's MRI and EEG indicated normal results, our neurologist at Children's wanted us to see an infectious disease doctor. Dr. B, along with a medical student and a fellow, greeted us for a full case history. I explained the course of development, and provided the labs, current diagnoses (PDD-NOS, Vitiligo, Eczema, and probable PANDAS), and results of medical procedures. Dr. B summarized and highlighted the main concerns for her students (Children's is a teaching hospital), including Sensory Integration Disorder, behavior problems, abnormal involuntary movements, inadequate social skills, elevated antistreptolysin O titer.
I'm not sure if it was because she had students in the room, but Dr. B explained everything so thoroughly and made everything click for me. Let's hope I can recreate the conversation from my notes...
First of all, she explained the difference between IGM's (early antibodies when we see during an active infection) and IGG's (the antibodies that remain after). She said that she wouldn't expect the IGM's to be elevated, since what we are dealing with at the moment is not an active infection. When I asked her if we needed to find the virus that was the potential cause of the spiral of events, she said that it wouldn't be beneficial to spend the time running labs and attempting to find the one in a million possible viruses...what we are mainly concerned with is that the prior infection led to an immune system response. Within the first month of an active infection, the antibody levels should go high, and then should fall to zero. If an elevated level of antibiodies is shown within a blood draw, then it indicates that there is a persistent antibody in the blood (true in Hunter's case, since he hasn't been diagnosed with strep since the initial insult at 17 months). If his body is periodically rechallenged, if he is re-exposed to the infections, his antibodies will elevate again (and she explained the importance of treating a strep infection immediately to prevent further damage and increasing the autoimmune response).
She asked if he had had an EKG to detect possible heart disease, with the link between strep and rheumatic fever (Group A strep). It can cause a strep related autoimmune reaction that leads to heart problems. At this point, we haven't had this procedure completed, but I will talk to our pediatrician when we meet with her to discuss the results of all of the recent testing and procedures.
PANDAS, according to Dr. B, is an ongoing inflammation, a result of an autoimmune reaction to strep. It can manifest in many ways, and can settle in the brain instead of the typical location. When strep is colonized, you can have a sub-clinical reaction with variable symptoms. Dr. B does not believe in the use of long-term antibiotics to treat PANDAS, due to the fact that she doesn't believe that it is an active infection...again, what we are left with is the residual of the insult. She said at this point she isn't impressed with the use of IVIG for the treatment of PANDAS, but she admitted that she isn't an expert and would like to conference with Dr. K to have data on the patients that he has treated with a case similar to Hunter. She isn't completely opposed to the treatment, but hasn't seen enough clinical trials to recommend the procedure.
Dr. B did swab for strep, as Hunter was exposed to a friend who was recently diagnosed with strep. She will grow the culture, as often times the rapid strep test is a false negative. She didn't feel a blood draw was necessary at this visit.
Recommendations...she said that we would possibly want to see a rheumatologist to discuss more of the autoimmune responses and decide if there was a course of treatment needed. The Vitiligo has progressed, and I would be so sad to see his little face continuing to discolor. She is going to contact Dr. K and be in touch with us.
We have seen numerous professionals and doctors over the past two months, and Dr. B summed our experience up so well in this one visit. She confirmed a diagnosis of PANDAS, and reaffirmed in my mind that the initial insult began the progression of the autoimmune response. She indicated that PANDAS and PDD-NOS are one in the same. We are dealing with the residual, which for our family means an Autism Spectrum Disorder...and a long road ahead filled with therapy.
I admitted to Dr. B that I wanted to bring my son to the best potential "recovery" possible, and she didn't bat an eye at this statement...she agreed. However, she wasn't sure that IVIG was the best answer at this point...but she was willing to consider it with documented research. She recommended that we continue the therapy and schooling programs that we have set for Hunter, and continue with supplements and other nutritional modifications that have shown to have positive results.
I didn't leave Children's today with a script to "fix" my son. I did, however, leave with a diagnosis that we have suspected since day one. It feels so good to know that we didn't imagine our son as normal prior to the viral insult. It feels absolutely amazing to hear from a doctor that she understands the progression, and validates the two inch thick binder that has been compiled for the last two years of chicken scratch notes from a late night google session, numerous specialist visits each with a piece of the puzzle, and lab results that are indicative of an autoimmune response to an infection. Sometimes, when you go against the grain, you are greeted with an intense amount of disbelief, accusations, and skepticism. However, when you follow your gut instincts as a parent, as well as your overflowing heart, you reach the end of the journey with an answer that confirms your original hypothesis.
I now believe that I can leave the search of the cause behind. I can feel validated when someone asks me about my son, and I can tell them that he has PANDAS (pediatric autoimmune neuropsychiatric disease associated with streptococcal infection), without feeling that I do not have justification for my answer. The journey now shifts completely to the best potential recovery for a child who is dealing with an autoimmune response to an insult that manifested in an unfortunate location.
However unfortunate it may seem, how fortunate am I to have been chosen to be his mommy and lead him on this journey.
I'm not sure if it was because she had students in the room, but Dr. B explained everything so thoroughly and made everything click for me. Let's hope I can recreate the conversation from my notes...
First of all, she explained the difference between IGM's (early antibodies when we see during an active infection) and IGG's (the antibodies that remain after). She said that she wouldn't expect the IGM's to be elevated, since what we are dealing with at the moment is not an active infection. When I asked her if we needed to find the virus that was the potential cause of the spiral of events, she said that it wouldn't be beneficial to spend the time running labs and attempting to find the one in a million possible viruses...what we are mainly concerned with is that the prior infection led to an immune system response. Within the first month of an active infection, the antibody levels should go high, and then should fall to zero. If an elevated level of antibiodies is shown within a blood draw, then it indicates that there is a persistent antibody in the blood (true in Hunter's case, since he hasn't been diagnosed with strep since the initial insult at 17 months). If his body is periodically rechallenged, if he is re-exposed to the infections, his antibodies will elevate again (and she explained the importance of treating a strep infection immediately to prevent further damage and increasing the autoimmune response).
She asked if he had had an EKG to detect possible heart disease, with the link between strep and rheumatic fever (Group A strep). It can cause a strep related autoimmune reaction that leads to heart problems. At this point, we haven't had this procedure completed, but I will talk to our pediatrician when we meet with her to discuss the results of all of the recent testing and procedures.
PANDAS, according to Dr. B, is an ongoing inflammation, a result of an autoimmune reaction to strep. It can manifest in many ways, and can settle in the brain instead of the typical location. When strep is colonized, you can have a sub-clinical reaction with variable symptoms. Dr. B does not believe in the use of long-term antibiotics to treat PANDAS, due to the fact that she doesn't believe that it is an active infection...again, what we are left with is the residual of the insult. She said at this point she isn't impressed with the use of IVIG for the treatment of PANDAS, but she admitted that she isn't an expert and would like to conference with Dr. K to have data on the patients that he has treated with a case similar to Hunter. She isn't completely opposed to the treatment, but hasn't seen enough clinical trials to recommend the procedure.
Dr. B did swab for strep, as Hunter was exposed to a friend who was recently diagnosed with strep. She will grow the culture, as often times the rapid strep test is a false negative. She didn't feel a blood draw was necessary at this visit.
Recommendations...she said that we would possibly want to see a rheumatologist to discuss more of the autoimmune responses and decide if there was a course of treatment needed. The Vitiligo has progressed, and I would be so sad to see his little face continuing to discolor. She is going to contact Dr. K and be in touch with us.
We have seen numerous professionals and doctors over the past two months, and Dr. B summed our experience up so well in this one visit. She confirmed a diagnosis of PANDAS, and reaffirmed in my mind that the initial insult began the progression of the autoimmune response. She indicated that PANDAS and PDD-NOS are one in the same. We are dealing with the residual, which for our family means an Autism Spectrum Disorder...and a long road ahead filled with therapy.
I admitted to Dr. B that I wanted to bring my son to the best potential "recovery" possible, and she didn't bat an eye at this statement...she agreed. However, she wasn't sure that IVIG was the best answer at this point...but she was willing to consider it with documented research. She recommended that we continue the therapy and schooling programs that we have set for Hunter, and continue with supplements and other nutritional modifications that have shown to have positive results.
I didn't leave Children's today with a script to "fix" my son. I did, however, leave with a diagnosis that we have suspected since day one. It feels so good to know that we didn't imagine our son as normal prior to the viral insult. It feels absolutely amazing to hear from a doctor that she understands the progression, and validates the two inch thick binder that has been compiled for the last two years of chicken scratch notes from a late night google session, numerous specialist visits each with a piece of the puzzle, and lab results that are indicative of an autoimmune response to an infection. Sometimes, when you go against the grain, you are greeted with an intense amount of disbelief, accusations, and skepticism. However, when you follow your gut instincts as a parent, as well as your overflowing heart, you reach the end of the journey with an answer that confirms your original hypothesis.
I now believe that I can leave the search of the cause behind. I can feel validated when someone asks me about my son, and I can tell them that he has PANDAS (pediatric autoimmune neuropsychiatric disease associated with streptococcal infection), without feeling that I do not have justification for my answer. The journey now shifts completely to the best potential recovery for a child who is dealing with an autoimmune response to an insult that manifested in an unfortunate location.
However unfortunate it may seem, how fortunate am I to have been chosen to be his mommy and lead him on this journey.
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