help me find it- neuroimmunology follow up 5.20.13
http://www.youtube.com/watch?v=CsjZ94K7UQs
That's how I started my day today. Sidewalk prophets Help Me Find It. Such a beautiful song with perfect words for this day of built up anguish, anticipation, frustration, hope, any feeling that goes into living a life with a special needs child. We had a very hard weekend- I finally emailed our lead therapist last night and told her we were throwing our hands up. I told her I was clearly at a loss. With the amount of therapy and expense, it doesn't seem right that we are struggling and manipulating and contemplating situations as much as we have to at this moment in time.
Today we met with Dr. G, the pediatric neuroimmunologist at Children's. Peter was able to meet us over his lunch, which I was so relieved about. It is hard to regurgitate all of the information that is discussed during all of Hunter's appointments, and relaying it appropriately and accurately is stressful. To date, this was the most important appointment in our journey...or so I hoped.
Dr. G started by reviewing his purpose of collecting the blood samples and sending them to the Mayo clinic. He told us he was looking for an antibody mediated problem. Sometimes, the body produces antibodies that can stick to cells in the brain. The four general areas, besides the brain, they look for the binding included the kidneys, lungs, muscle, and GI tract.The people in the lab will see some patterns repeatedly, and other hosts will only be seen once. The standard report that he received was that all of the generalized tests completed were normal- they were not able to identify an antibody.
Again.
Here we are, knowing something is "wrong" with our son, but every test comes back "normal." However, due to Hunter's case history and especially his vitiligo, he didn't want to stop there. His top options were the following:
1) Attempt more lab testing. He didn't want it to be a cat and mouse game, however, where we would stick and stick until we found the antibody he was looking for- it could be a lifetime of blood draws, since every person is unique in their make-up. He also raised the question- how far do we go before trying empirical therapies? He said there were two others he would recommend in the states if we wanted to get a second opinion: Tim Latse in Houston, and Brenda Bandwell in Philadelphia (CHOP).
2) Do a steroid burst. The steroids would temporarily reduce antibody production. He thought that since this was completed a year ago, and we knew he did fine medically with the steroids, we should give it another shot and keep our therapists in the dark as to the time period it was given, in order to have a blind opinion. There are so many factors that go into a good day vs a bad day for Hunter, he didn't want us to be swayed unfairly if the environment, a good night's sleep, etc was truly the responsible factor. There are risks to the steroids (insomnia, changes in eating, depression, small risk of infection, and irritability for two weeks, and then there are big risks (AVN (avascular necrosis), where the bones of the hips, knees, and shoulders can be affected; again, chance is small, in the millions). Medicine is not sure if it is dose dependent or not, but again, very small risks. His dosage was much higher than Dr K's, who did 5mg/K...he would do 20m/K.
3) PET Scan or Spinal Tap. The PET scan would measure the metabolism/ activity of the regions of the brain. There would be a radioactive tracer that would label the glucose sugar. It would also give us a baseline to see the quantifiable measure of the response to therapy. The spinal tap would look at the antibodies (if there were any) in the CSF.
IF the steroid burst was attempted and it was deemed to have positive results, then we would follow a different route:
1) After interrupting the immune system, we would determine the duration of the benefit. If positive effects lasted 9 months to a year, then we would just consider doing the steroids once/year for maintenance. If it was only 3-6 months, then we would need to consider a bigger gun. See #2
2) IVIG: He would be hospitalized for about five days, where he would flood his system with antibodies. In theory, it would turn off the cells that are making confused antibodies. He told us there were 2,000 different people who contribute to this procedure. He also didn't think it would be a one-time procedure. He would expect him to need at least another infusion.
3) Plasmapheresis: he sees a bigger improvement in his patients that go this route. He would be hospitalized for 7-10 days, where they would essentially clean his blood, 90 minutes a day. He would get a line in a central vein, and his blood would go into a machine, synthetic protein would go in to clean it, and it would cycle back in to his system.
I asked him the first million dollar question: If Hunter was your child, what would you do?
He said he would do the steroids first, wait 8-10 weeks to take data and determine the efficacy (if any). At that point, if it was positive, he would either to #2 or #3. If it was not indicative of a change, then he would act in a way of sustainability...continue with the behavioral therapies and continue the search, with the aid of a PET scan or Spinal Tap.
And then I asked him the second million dollar question: Is there ever a chance of him returning to normalcy?
He said in his experience, antibody mediated diseases can return to previous functioning. However, without the exact antibody that is attacking Hunter, there is no protocol to "treat" him. He would be re-engineering the labs with empirical trials. For him, the steroid burst would be his first step in the right direction of finding the antibody.
Of finding the reason for all of this.
Of finding the answer to my deepest compelling thoughts and prayers.
Of finding the "normal" that we yearn for so intently.
So Dr. G, help us find it....
Dr. E, help us find it...
Hunter, help us find it....
God above, please help us find it...
I don't know where to go from here. It all used to seem so clear. I'm finding I can't do this on my own. I don't know where to go from here. As long as I know that you are near. I'm done fighting. I'm finally letting go. I will trust in you, you've never failed before. I will trust in you.
If there's a road, I should walk, help me find it. If I need to be still, give me peace for the moment. Whatever your will, whatever your will, can you help me find it. Can you help me find it?
I'm giving you fear and you give faith. I'm giving you doubt you give me grace. For every step I've never been alone. Even when it hurts you have your way. Even in the valley I will say with every breath, you've never let me go. I will wait for you. You've never failed before. I will wait for you.
If there's a road I should walk, help me find it. If I need to be still, give me peace for the moment. Whatever your will, whatever your will, can you help me find it. Can you help me find it?
I lift my empty hands, come fill me up again. Have your way, my King. I give my all to you. I lift my eyes up yet, was blind and now I see, cause you are all I need.
If there's a road I should walk, help me find it. If I need to be still give me peace for the moment. Whatever your will, whatever your will, can you help me find it. Can you help me find it?
-Sidewalk Prophets
http://www.youtube.com/watch?v=CsjZ94K7UQs
That's how I started my day today. Sidewalk prophets Help Me Find It. Such a beautiful song with perfect words for this day of built up anguish, anticipation, frustration, hope, any feeling that goes into living a life with a special needs child. We had a very hard weekend- I finally emailed our lead therapist last night and told her we were throwing our hands up. I told her I was clearly at a loss. With the amount of therapy and expense, it doesn't seem right that we are struggling and manipulating and contemplating situations as much as we have to at this moment in time.
Today we met with Dr. G, the pediatric neuroimmunologist at Children's. Peter was able to meet us over his lunch, which I was so relieved about. It is hard to regurgitate all of the information that is discussed during all of Hunter's appointments, and relaying it appropriately and accurately is stressful. To date, this was the most important appointment in our journey...or so I hoped.
Dr. G started by reviewing his purpose of collecting the blood samples and sending them to the Mayo clinic. He told us he was looking for an antibody mediated problem. Sometimes, the body produces antibodies that can stick to cells in the brain. The four general areas, besides the brain, they look for the binding included the kidneys, lungs, muscle, and GI tract.The people in the lab will see some patterns repeatedly, and other hosts will only be seen once. The standard report that he received was that all of the generalized tests completed were normal- they were not able to identify an antibody.
Again.
Here we are, knowing something is "wrong" with our son, but every test comes back "normal." However, due to Hunter's case history and especially his vitiligo, he didn't want to stop there. His top options were the following:
1) Attempt more lab testing. He didn't want it to be a cat and mouse game, however, where we would stick and stick until we found the antibody he was looking for- it could be a lifetime of blood draws, since every person is unique in their make-up. He also raised the question- how far do we go before trying empirical therapies? He said there were two others he would recommend in the states if we wanted to get a second opinion: Tim Latse in Houston, and Brenda Bandwell in Philadelphia (CHOP).
2) Do a steroid burst. The steroids would temporarily reduce antibody production. He thought that since this was completed a year ago, and we knew he did fine medically with the steroids, we should give it another shot and keep our therapists in the dark as to the time period it was given, in order to have a blind opinion. There are so many factors that go into a good day vs a bad day for Hunter, he didn't want us to be swayed unfairly if the environment, a good night's sleep, etc was truly the responsible factor. There are risks to the steroids (insomnia, changes in eating, depression, small risk of infection, and irritability for two weeks, and then there are big risks (AVN (avascular necrosis), where the bones of the hips, knees, and shoulders can be affected; again, chance is small, in the millions). Medicine is not sure if it is dose dependent or not, but again, very small risks. His dosage was much higher than Dr K's, who did 5mg/K...he would do 20m/K.
3) PET Scan or Spinal Tap. The PET scan would measure the metabolism/ activity of the regions of the brain. There would be a radioactive tracer that would label the glucose sugar. It would also give us a baseline to see the quantifiable measure of the response to therapy. The spinal tap would look at the antibodies (if there were any) in the CSF.
IF the steroid burst was attempted and it was deemed to have positive results, then we would follow a different route:
1) After interrupting the immune system, we would determine the duration of the benefit. If positive effects lasted 9 months to a year, then we would just consider doing the steroids once/year for maintenance. If it was only 3-6 months, then we would need to consider a bigger gun. See #2
2) IVIG: He would be hospitalized for about five days, where he would flood his system with antibodies. In theory, it would turn off the cells that are making confused antibodies. He told us there were 2,000 different people who contribute to this procedure. He also didn't think it would be a one-time procedure. He would expect him to need at least another infusion.
3) Plasmapheresis: he sees a bigger improvement in his patients that go this route. He would be hospitalized for 7-10 days, where they would essentially clean his blood, 90 minutes a day. He would get a line in a central vein, and his blood would go into a machine, synthetic protein would go in to clean it, and it would cycle back in to his system.
I asked him the first million dollar question: If Hunter was your child, what would you do?
He said he would do the steroids first, wait 8-10 weeks to take data and determine the efficacy (if any). At that point, if it was positive, he would either to #2 or #3. If it was not indicative of a change, then he would act in a way of sustainability...continue with the behavioral therapies and continue the search, with the aid of a PET scan or Spinal Tap.
And then I asked him the second million dollar question: Is there ever a chance of him returning to normalcy?
He said in his experience, antibody mediated diseases can return to previous functioning. However, without the exact antibody that is attacking Hunter, there is no protocol to "treat" him. He would be re-engineering the labs with empirical trials. For him, the steroid burst would be his first step in the right direction of finding the antibody.
Of finding the reason for all of this.
Of finding the answer to my deepest compelling thoughts and prayers.
Of finding the "normal" that we yearn for so intently.
So Dr. G, help us find it....
Dr. E, help us find it...
Hunter, help us find it....
God above, please help us find it...
I don't know where to go from here. It all used to seem so clear. I'm finding I can't do this on my own. I don't know where to go from here. As long as I know that you are near. I'm done fighting. I'm finally letting go. I will trust in you, you've never failed before. I will trust in you.
If there's a road, I should walk, help me find it. If I need to be still, give me peace for the moment. Whatever your will, whatever your will, can you help me find it. Can you help me find it?
I'm giving you fear and you give faith. I'm giving you doubt you give me grace. For every step I've never been alone. Even when it hurts you have your way. Even in the valley I will say with every breath, you've never let me go. I will wait for you. You've never failed before. I will wait for you.
If there's a road I should walk, help me find it. If I need to be still, give me peace for the moment. Whatever your will, whatever your will, can you help me find it. Can you help me find it?
I lift my empty hands, come fill me up again. Have your way, my King. I give my all to you. I lift my eyes up yet, was blind and now I see, cause you are all I need.
If there's a road I should walk, help me find it. If I need to be still give me peace for the moment. Whatever your will, whatever your will, can you help me find it. Can you help me find it?
-Sidewalk Prophets
http://www.youtube.com/watch?v=CsjZ94K7UQs
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