Waking up a warrior
After our last appointment, where we were told the continuation of IVIG was at risk, I was really down. I was upset with myself for faltering, from straying from the course...and probably taking a desperate route in order to make Hunter better.
As parents, we never want to see our children suffering. And for EIGHT weeks, he was struggling. He wasn't himself- he was miserable, unbearable, and extremely difficult to handle. So we went with our Nurse Practitioner's advice to start an antibiotic, for I feared Hunter had an acute infection. In my mind, at that time, acute infection=behaviors=antibiotic.
I was regretting the decision...and went to bed with a depressed mind and a sad heart. I thought I had ended his chance at recovery. After working so darn hard to get here, I messed it up.
I woke up with a renewed mind. As soon as my eyes opened, I reached for the notepad on my nightstand and started writing- and didn't stop. All of my thoughts, all of my questions...
this fight wasn't over yet.
I called Dr. G's nurse and left a message, explaining that we weren't ready to give up. We knew we made a mistake, but we stood by our decision at the time due to the circumstances. I told her I had several questions for Dr. G, including why the antibiotic weighed so heavily against us, when we had done an antifungal antibiotic prior to the steroid burst and he told us the change in behavior had nothing to do with the antibiotic. I went on the NIH website (because Dr. G is very data, research driven) and found this statement:
"In PANDAS, it appears that the antibodies produced by the body in response to strep infection are the cause of the problem, not the bacteria themselves. Therefore, one could not expect antibiotics to treat the symptoms of PANDAS."
I explained on the phone that due to the belief that he had an acute infection (whether strep or sinus) we started the medication, and Hunter never, ever presents like a typical child. He doesn't run fever- he has an abnormal fever response.
We have had scripts of Omnicef sitting in our pantry for over a year, ready to be mixed if we felt the need to start. We have never, ever gone to those antibiotics, for we have turned away from the daily antibiotic route that so many PANDAS patients follow. I am a firm believer in the health of the gut, and if the immune system truly stems from the gut, how can I heal Hunter with destroying good gut flora?
I didn't hear back from the nurse on Monday, and I left one more message Tuesday afternoon asking if we should plan to clear our schedule that day during the time I had requested for a phone conference. The hours ticked away, and my heart sunk deeper as I thought we were done.
6:20PM- the phone rang, and it was Dr. G himself.
He wanted to first answer any questions that Peter had, since he had to leave early. Since he wasn't home from work yet, I started with my concerns and revelations I had over the weekend.
I don't know how to explain how much I respect this man, or how fortunate I feel to have him as Hunter's doctor, but maybe the following with help...
After telling me that antifungals are different than typical antibiotics, he went on: to be clear, it wasn't the antibiotic itself that upset him so much.
It was the philosophy behind it.
He explained that the reason we went to the doctor wasn't because Hunter was showing PHYSICAL symptoms of an illness; it was behavioral.
As much as I tried to demonstrate that Hunter didn't have typical "sick" symptoms, he continued. He reminded me that he came into this specialty of pediatric neuroimmunology by way of other disorders. He was an adult neurologist who has now dabbled in the pediatric side of neuro/immunology. In his typical analogy-type dialogue, he said he was called in by our previous neurologist as the ninth inning relief pitcher. Even though he has shown such success with some of his patients- curing the incurable, and giving families true recovery, he is slightly out of his comfort zone. We are one of three families he sees that have similar, PANDAS-type issues. He also reiterated that we disagree in the fact that I think strep triggers his behaviors- he doesn't believe strep can stand alone. There are very few illnesses that have symptom X that causes Y.
He said that he is doing his best to stay unbiased, and make the best clinical judgment possible for sustainability and efficacy.
Could I really ask for anything more?
Do we really want to continue IVIG if it isn't truly making a sustainable difference, with sustainable being the key word?
He said the best researchers are those who come up with a theory, and continuously attempt to disprove it. So in essence, it seems he is trying to disprove the strep connection and demonstrate that it is an autoimmunity issue.
If we are going down the immune pathway, he told us that what will help everyone the most is that we BELIEVE it. He said it is extremely hard to trust the data when filters are added to the data (ex. antibiotics, biased opinions, adding new supplements, etc).
If we go down the infection route and believe that infection clouds behavior, then is makes it hard to know what is truly happening. He reminded us that we are constantly fighting viruses in our body.
I do believe in the autoimmune connection. I wish I could show him this blog and tell him to read every entry- I even believe Autism is autoimmune! That's a pretty bold statement when so much of the focus of research has been on genetics.
I do believe in the IVIG. I believe in its efficacy. I told him that I am not a doctor, but I have devoted my career to studying the communication of children. I listen to children for vocal quality, articulation, grammar and syntax, pragmatics of speech- and I know when Hunter has a treatment. His speech is more organized; the spontaneous quality is at a new level; his reciprocal conversation is immediate instead of delayed or prompted; and his social communication is so much better.
I do believe in Dr. G. Even though he doesn't have experience with PANDAS, and doesn't even believe in the true definition, he does believe in a causal event that changed the immune system in our son- and antibodies have taken over his healthy blood cells.
I also, though, believe in gut instinct. I believe in a mother's (and father's!) ability to look at their child and know they are getting sick, know if their feelings had been hurt at school that day, listen to their voice and know they are anxious about a situation, and diagnosis a difference in behavior. With the most recent happenings, I do believe an infection of some sort (or maybe just an increase in the production of antibodies) caused a major flare.
I asked Dr. G if he would still be our doctor- and he said of course, as long as we were willing to 1) stick to the course 2)continue to ask questions- he said he isn't all-knowing 3)believe in the immune connection.
His recommendation was to conference with one another (Peter and I) and decide our next step. If we decided to continue, he wanted us to complete the next two rounds of IVIG (eight weeks apart instead of four) and come back to discuss efficacy and sustainability.
He told us at the start of this journey that Hunter's case carried an immediate nature to diagnosing the problem due to his age and his frontal lobe development. Antibodies can bind leading to the 1) destruction of cells or 2)dysfunction of cells. "We want to stop the progression now," he told us a year ago.
Looking at this boy whose pupils haven't been dilated since the last IVIG, that is my most ultimate desire. Stop the progression, and recover the boy who has been standing in the shadows of this autoimmune disorder.
As parents, we never want to see our children suffering. And for EIGHT weeks, he was struggling. He wasn't himself- he was miserable, unbearable, and extremely difficult to handle. So we went with our Nurse Practitioner's advice to start an antibiotic, for I feared Hunter had an acute infection. In my mind, at that time, acute infection=behaviors=antibiotic.
I was regretting the decision...and went to bed with a depressed mind and a sad heart. I thought I had ended his chance at recovery. After working so darn hard to get here, I messed it up.
I woke up with a renewed mind. As soon as my eyes opened, I reached for the notepad on my nightstand and started writing- and didn't stop. All of my thoughts, all of my questions...
this fight wasn't over yet.
I called Dr. G's nurse and left a message, explaining that we weren't ready to give up. We knew we made a mistake, but we stood by our decision at the time due to the circumstances. I told her I had several questions for Dr. G, including why the antibiotic weighed so heavily against us, when we had done an antifungal antibiotic prior to the steroid burst and he told us the change in behavior had nothing to do with the antibiotic. I went on the NIH website (because Dr. G is very data, research driven) and found this statement:
"In PANDAS, it appears that the antibodies produced by the body in response to strep infection are the cause of the problem, not the bacteria themselves. Therefore, one could not expect antibiotics to treat the symptoms of PANDAS."
I explained on the phone that due to the belief that he had an acute infection (whether strep or sinus) we started the medication, and Hunter never, ever presents like a typical child. He doesn't run fever- he has an abnormal fever response.
We have had scripts of Omnicef sitting in our pantry for over a year, ready to be mixed if we felt the need to start. We have never, ever gone to those antibiotics, for we have turned away from the daily antibiotic route that so many PANDAS patients follow. I am a firm believer in the health of the gut, and if the immune system truly stems from the gut, how can I heal Hunter with destroying good gut flora?
I didn't hear back from the nurse on Monday, and I left one more message Tuesday afternoon asking if we should plan to clear our schedule that day during the time I had requested for a phone conference. The hours ticked away, and my heart sunk deeper as I thought we were done.
6:20PM- the phone rang, and it was Dr. G himself.
He wanted to first answer any questions that Peter had, since he had to leave early. Since he wasn't home from work yet, I started with my concerns and revelations I had over the weekend.
I don't know how to explain how much I respect this man, or how fortunate I feel to have him as Hunter's doctor, but maybe the following with help...
After telling me that antifungals are different than typical antibiotics, he went on: to be clear, it wasn't the antibiotic itself that upset him so much.
It was the philosophy behind it.
He explained that the reason we went to the doctor wasn't because Hunter was showing PHYSICAL symptoms of an illness; it was behavioral.
As much as I tried to demonstrate that Hunter didn't have typical "sick" symptoms, he continued. He reminded me that he came into this specialty of pediatric neuroimmunology by way of other disorders. He was an adult neurologist who has now dabbled in the pediatric side of neuro/immunology. In his typical analogy-type dialogue, he said he was called in by our previous neurologist as the ninth inning relief pitcher. Even though he has shown such success with some of his patients- curing the incurable, and giving families true recovery, he is slightly out of his comfort zone. We are one of three families he sees that have similar, PANDAS-type issues. He also reiterated that we disagree in the fact that I think strep triggers his behaviors- he doesn't believe strep can stand alone. There are very few illnesses that have symptom X that causes Y.
He said that he is doing his best to stay unbiased, and make the best clinical judgment possible for sustainability and efficacy.
Could I really ask for anything more?
Do we really want to continue IVIG if it isn't truly making a sustainable difference, with sustainable being the key word?
He said the best researchers are those who come up with a theory, and continuously attempt to disprove it. So in essence, it seems he is trying to disprove the strep connection and demonstrate that it is an autoimmunity issue.
If we are going down the immune pathway, he told us that what will help everyone the most is that we BELIEVE it. He said it is extremely hard to trust the data when filters are added to the data (ex. antibiotics, biased opinions, adding new supplements, etc).
If we go down the infection route and believe that infection clouds behavior, then is makes it hard to know what is truly happening. He reminded us that we are constantly fighting viruses in our body.
I do believe in the autoimmune connection. I wish I could show him this blog and tell him to read every entry- I even believe Autism is autoimmune! That's a pretty bold statement when so much of the focus of research has been on genetics.
I do believe in the IVIG. I believe in its efficacy. I told him that I am not a doctor, but I have devoted my career to studying the communication of children. I listen to children for vocal quality, articulation, grammar and syntax, pragmatics of speech- and I know when Hunter has a treatment. His speech is more organized; the spontaneous quality is at a new level; his reciprocal conversation is immediate instead of delayed or prompted; and his social communication is so much better.
I do believe in Dr. G. Even though he doesn't have experience with PANDAS, and doesn't even believe in the true definition, he does believe in a causal event that changed the immune system in our son- and antibodies have taken over his healthy blood cells.
I also, though, believe in gut instinct. I believe in a mother's (and father's!) ability to look at their child and know they are getting sick, know if their feelings had been hurt at school that day, listen to their voice and know they are anxious about a situation, and diagnosis a difference in behavior. With the most recent happenings, I do believe an infection of some sort (or maybe just an increase in the production of antibodies) caused a major flare.
I asked Dr. G if he would still be our doctor- and he said of course, as long as we were willing to 1) stick to the course 2)continue to ask questions- he said he isn't all-knowing 3)believe in the immune connection.
His recommendation was to conference with one another (Peter and I) and decide our next step. If we decided to continue, he wanted us to complete the next two rounds of IVIG (eight weeks apart instead of four) and come back to discuss efficacy and sustainability.
He told us at the start of this journey that Hunter's case carried an immediate nature to diagnosing the problem due to his age and his frontal lobe development. Antibodies can bind leading to the 1) destruction of cells or 2)dysfunction of cells. "We want to stop the progression now," he told us a year ago.
Looking at this boy whose pupils haven't been dilated since the last IVIG, that is my most ultimate desire. Stop the progression, and recover the boy who has been standing in the shadows of this autoimmune disorder.
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