Was it worth the wait? Most definetly. Neurology 4.5.13
When Hunter first started having issues with sensory systems, the tic, and all of the things that changed during the life-altering event, we called Children's to get in to see a highly recommended neurologist, Dr. E. She was booked out for a year, but we were able to schedule with her partner, Dr. G. At that point, we needed to know if Autism was a possible diagnosis, so we couldn't wait. Unfortunately, we didn't feel like we were led down the correct path (she told us that he had a Sensory Integration Disorder, but not Autism). We knew he needed a team assessment, and that was quickly scheduled, where he was in fact diagnosed.
This year, our pediatrician had wanted us to see a neurologist again, to possibly redo the EEG that had been completed at 17 months, as well as an MRI or any other necessary procedures. When I called to see if I could schedule with Dr E, they informed me that once you were placed with a neurologist, you were not allowed to switch to a different MD. If you have followed our blog, you know that answer didn't sit well with me. I spoke to the nurse multiple times, talked and pleaded with the office manager, and I did not get anywhere. We returned to see Dr. G, and she did in fact order an EEG and MRI.
Our follow-up was scheduled for today. This week, I told the Children's IOP that we had a follow-up, and his case manager sent me an email earlier in the week that said his appointment was with Dr. E, not Dr. G! I don't know how we ended up on her schedule, but someone pulled some strings for me and I was most grateful.
Neurology was one of my most difficult courses in graduate school- such a fascinating science, but the memorization and understanding of all of the neural pathways was overwhelming. Each neurologist we have seen in the past has generally been a little stoic, a little blunt, and a little rushed. Today was completely different.
Dr. E walked in and shook my hand, and told me she had reviewed our case with Dr. G, but that she wanted to hear it from me. "Is that OK with you?" she asked me. "We have all day (it was 3:30PM) so start from the beginning."
Throughout my case history she stopped me to ask questions and get clarification. Not once did I feel rushed or silly for giving so many details. She wrote down all of the pertinent information and not until I had finished the complete story, did she offer her guidance, expertise, and kindness.
She first asked me, "What do you hope to get out of this visit today?"
I took a deep breath, and I knew my voice would waver, but I told her, "I want to help my son more than anything. I want to bring him back to normal. I want him to enjoy life like our other children and form relationships and not struggle anymore. I want him back. I just haven't found the exact combination to do so."
She told me she had a few options and ideas. I'll start with the diagnostic ones.
1) Have a spinal tap completed. This would determine if it was an autoimmune deficiency/disease.
2) PET scan to look at hypofunction and the basal ganglia (where it is believed strep lies in PANDAS).
Honestly, both make me nervous but I wanted to hear her out.
Then she asked me if I knew which disorders/health issues were #1 on the rise for pediatrics, not including Autism. The answer: Pediatric Neuroimmunology. Kids are now getting MS, etc, and the reasoning is unknown.
Dr E. said she wanted to talk to two colleagues over the next couple of days and get back to me on Wednesday about a couple of other ideas.
1) Dr. G (studied at Hopkins): He's a pediatric immunologist who would assist Dr. E in determining if this was a true autoimmune disease in which IVIG would assist in recovery, and also if a spinal tap or PET scan would be necessary.
2) She also had another pediatric immunologist at Children's that she wanted to conference with to get an opinion of the factors that manifested as a combination of many things, as well as the possibility of IVIG.
All of this information was exciting to hear, but the next words out of her mouth made the biggest impact.
"If I can only do one thing for you after all of our time together, now and in the future, it will be to get the coding correct. Your son needs to have a Primary diagnosis of Autoimmune Disorder, and a Secondary diagnosis of Autism(with subsequent changes in fine motor and social skills secondary to an acute strep infection). His autoimmune process is atypical...his reactions that occurred subsequently are all related to the initial autoimmune reaction."
"The Autism phenotype can host a million things that trigger the behavioral changes. In classic acquired Autism cases, language is lost. With your son, this was clearly not the case. You have credible, valid information that indicates that this was related to a significant event, acutely caused by strep."
Thank you, Dr. E. Once again, we have been validated and she truly believes that all of these autoimmune reactions that Hunter has experienced (intolerance to wheat/gluten, vitiligo, eczema) are all related. She complimented our decisions thus far, and especially credited us with not falling to the "hype, the more controversial methods of recovery."
A neurologist believes in this case history. She believes in the PANDAS diagnosis. She believes in us.
And most importantly, she believes she can help our son.
I don't know how or why we were added to her schedule, but I believe somehow divine intervention had an influence. A big part of this journey has revolved around finding the right professionals to assist in advising us in the right direction at the right time.
Looking forward to speaking with Dr. E this next week. We could have some big decisions to make in the very near future.
This year, our pediatrician had wanted us to see a neurologist again, to possibly redo the EEG that had been completed at 17 months, as well as an MRI or any other necessary procedures. When I called to see if I could schedule with Dr E, they informed me that once you were placed with a neurologist, you were not allowed to switch to a different MD. If you have followed our blog, you know that answer didn't sit well with me. I spoke to the nurse multiple times, talked and pleaded with the office manager, and I did not get anywhere. We returned to see Dr. G, and she did in fact order an EEG and MRI.
Our follow-up was scheduled for today. This week, I told the Children's IOP that we had a follow-up, and his case manager sent me an email earlier in the week that said his appointment was with Dr. E, not Dr. G! I don't know how we ended up on her schedule, but someone pulled some strings for me and I was most grateful.
Neurology was one of my most difficult courses in graduate school- such a fascinating science, but the memorization and understanding of all of the neural pathways was overwhelming. Each neurologist we have seen in the past has generally been a little stoic, a little blunt, and a little rushed. Today was completely different.
Dr. E walked in and shook my hand, and told me she had reviewed our case with Dr. G, but that she wanted to hear it from me. "Is that OK with you?" she asked me. "We have all day (it was 3:30PM) so start from the beginning."
Throughout my case history she stopped me to ask questions and get clarification. Not once did I feel rushed or silly for giving so many details. She wrote down all of the pertinent information and not until I had finished the complete story, did she offer her guidance, expertise, and kindness.
She first asked me, "What do you hope to get out of this visit today?"
I took a deep breath, and I knew my voice would waver, but I told her, "I want to help my son more than anything. I want to bring him back to normal. I want him to enjoy life like our other children and form relationships and not struggle anymore. I want him back. I just haven't found the exact combination to do so."
She told me she had a few options and ideas. I'll start with the diagnostic ones.
1) Have a spinal tap completed. This would determine if it was an autoimmune deficiency/disease.
2) PET scan to look at hypofunction and the basal ganglia (where it is believed strep lies in PANDAS).
Honestly, both make me nervous but I wanted to hear her out.
Then she asked me if I knew which disorders/health issues were #1 on the rise for pediatrics, not including Autism. The answer: Pediatric Neuroimmunology. Kids are now getting MS, etc, and the reasoning is unknown.
Dr E. said she wanted to talk to two colleagues over the next couple of days and get back to me on Wednesday about a couple of other ideas.
1) Dr. G (studied at Hopkins): He's a pediatric immunologist who would assist Dr. E in determining if this was a true autoimmune disease in which IVIG would assist in recovery, and also if a spinal tap or PET scan would be necessary.
2) She also had another pediatric immunologist at Children's that she wanted to conference with to get an opinion of the factors that manifested as a combination of many things, as well as the possibility of IVIG.
All of this information was exciting to hear, but the next words out of her mouth made the biggest impact.
"If I can only do one thing for you after all of our time together, now and in the future, it will be to get the coding correct. Your son needs to have a Primary diagnosis of Autoimmune Disorder, and a Secondary diagnosis of Autism(with subsequent changes in fine motor and social skills secondary to an acute strep infection). His autoimmune process is atypical...his reactions that occurred subsequently are all related to the initial autoimmune reaction."
"The Autism phenotype can host a million things that trigger the behavioral changes. In classic acquired Autism cases, language is lost. With your son, this was clearly not the case. You have credible, valid information that indicates that this was related to a significant event, acutely caused by strep."
Thank you, Dr. E. Once again, we have been validated and she truly believes that all of these autoimmune reactions that Hunter has experienced (intolerance to wheat/gluten, vitiligo, eczema) are all related. She complimented our decisions thus far, and especially credited us with not falling to the "hype, the more controversial methods of recovery."
A neurologist believes in this case history. She believes in the PANDAS diagnosis. She believes in us.
And most importantly, she believes she can help our son.
I don't know how or why we were added to her schedule, but I believe somehow divine intervention had an influence. A big part of this journey has revolved around finding the right professionals to assist in advising us in the right direction at the right time.
Looking forward to speaking with Dr. E this next week. We could have some big decisions to make in the very near future.
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