Immunologist #2-second (or millionth) opinion
This Monday, we had an appointment with Dr. W, another immunologist we had seen in September of 2012. I had mentioned previously that I followed all of his six recommendations, so I was hoping for an agreement to follow through with IVIG.
He started off by reviewing my file folders and notes from the steroid burst (including all the behavioral graphs). He said he was impressed that we took his advice and completed the visits he had outlined for us. He said he trusted Dr. E, our neurologist, and valued her and Dr G's (neuroimmunologist) opinion, thought they practiced from credible facilities, and would be a part of our team based on their diagnoses.
He had one caveat..when he orders IVIG, it is typically for immune-deficient children- those who are constantly ill, have recurrent infections, and can't fight off viruses, etc. He has little experience with Auto-immune patients, where the immune system recognizes some part of the body as foreign and begins to attack it.
I value this physician's opinion, as many of our friends see him, and he is very science based...I need those type of opinions at this point in the game. So we asked him what his course of treatment would be to see if it matched Dr. G's.
He recommended IVIG 2g/kilo, over the same four day period, as Dr. G had said. He did suggest a different brand of gammuglobulin, called Privagen; the stabilizer in that type of therapy is glycine (and with the others, there are some enzyme pathways that can be interrupted). He thought this was the one with the least risks; however, he said that if insurance only covered one type (Gamunex), he would feel comfortable using that product. He said that he would only base progress off of a three month trial period- one month would not be enough to determine if it was making a difference.
He went through the risks of all of the options outlined for us by Dr. G.
1) Rituxin: This was the high risk therapy that would basically wipe out Hunter's B Cells. He said to look at it like a "picket fence." We are all born with the plain boards, and as we age, pickets are formed. The B Cells repopulate over time and the hope is that the particular clone that is making the confused antibodies will not come back. However, he agreed that the treatment is risky; there is always the chance that the B Cells won't come back- at all. And then we would be looking at a lifetime of IVIG therapy to support his immune system.
2) Steroids: They can influence the cells that the antibodies work with- with prolonged use, they could in theory affect the B Cells and stop the confusion. However, there is the bone density risk and all of the other typical steroid risks that are associated with not dosage, but repeated use. Even though he was given a hefty dose of SoluMedral the first round, it is the amount of trials, not dosage, that has been shown to impact the body.
3) IVIG: He felt out of the three options, it was the safest. The acute risks are very small- he said it has been used since 1980 to treat Autoimmune and Immunodeficiency issues. The gammuglobulin can affect both the T Cells and the B Cells, and could make a huge change in Hunter's reaction. He said that the Vitiligo is usually in conjunction with another type of Autoimmune Disorder, but it can stand alone.
I asked him a few questions about the motor aspect of things (Hunter's tics, arm flapping, etc)- he stopped me and told me I was getting out of his realm of expertise- I would have to speak to the neurologist about those concerns.
I can really appreciate a physician who can tell me to go to another doctor, and only commenting on his qualifications...he told us that he felt Dr. G should lead this process, since he has expertise in both areas. However, if for some reason Dr. G would not continue with our case, he would recommend IVIG after getting a few questions answered from Dr. G. He is going to email him this week.
So far, everything has aligned between the two immunologists recommended to us from several people. Every recommendation has been examined and the risk/benefit analysis has been presented.
Now we as parents are left to make the decisions.
Praying for an insurance miracle and the signs that we are headed in the right direction.
He started off by reviewing my file folders and notes from the steroid burst (including all the behavioral graphs). He said he was impressed that we took his advice and completed the visits he had outlined for us. He said he trusted Dr. E, our neurologist, and valued her and Dr G's (neuroimmunologist) opinion, thought they practiced from credible facilities, and would be a part of our team based on their diagnoses.
He had one caveat..when he orders IVIG, it is typically for immune-deficient children- those who are constantly ill, have recurrent infections, and can't fight off viruses, etc. He has little experience with Auto-immune patients, where the immune system recognizes some part of the body as foreign and begins to attack it.
I value this physician's opinion, as many of our friends see him, and he is very science based...I need those type of opinions at this point in the game. So we asked him what his course of treatment would be to see if it matched Dr. G's.
He recommended IVIG 2g/kilo, over the same four day period, as Dr. G had said. He did suggest a different brand of gammuglobulin, called Privagen; the stabilizer in that type of therapy is glycine (and with the others, there are some enzyme pathways that can be interrupted). He thought this was the one with the least risks; however, he said that if insurance only covered one type (Gamunex), he would feel comfortable using that product. He said that he would only base progress off of a three month trial period- one month would not be enough to determine if it was making a difference.
He went through the risks of all of the options outlined for us by Dr. G.
1) Rituxin: This was the high risk therapy that would basically wipe out Hunter's B Cells. He said to look at it like a "picket fence." We are all born with the plain boards, and as we age, pickets are formed. The B Cells repopulate over time and the hope is that the particular clone that is making the confused antibodies will not come back. However, he agreed that the treatment is risky; there is always the chance that the B Cells won't come back- at all. And then we would be looking at a lifetime of IVIG therapy to support his immune system.
2) Steroids: They can influence the cells that the antibodies work with- with prolonged use, they could in theory affect the B Cells and stop the confusion. However, there is the bone density risk and all of the other typical steroid risks that are associated with not dosage, but repeated use. Even though he was given a hefty dose of SoluMedral the first round, it is the amount of trials, not dosage, that has been shown to impact the body.
3) IVIG: He felt out of the three options, it was the safest. The acute risks are very small- he said it has been used since 1980 to treat Autoimmune and Immunodeficiency issues. The gammuglobulin can affect both the T Cells and the B Cells, and could make a huge change in Hunter's reaction. He said that the Vitiligo is usually in conjunction with another type of Autoimmune Disorder, but it can stand alone.
I asked him a few questions about the motor aspect of things (Hunter's tics, arm flapping, etc)- he stopped me and told me I was getting out of his realm of expertise- I would have to speak to the neurologist about those concerns.
I can really appreciate a physician who can tell me to go to another doctor, and only commenting on his qualifications...he told us that he felt Dr. G should lead this process, since he has expertise in both areas. However, if for some reason Dr. G would not continue with our case, he would recommend IVIG after getting a few questions answered from Dr. G. He is going to email him this week.
So far, everything has aligned between the two immunologists recommended to us from several people. Every recommendation has been examined and the risk/benefit analysis has been presented.
Now we as parents are left to make the decisions.
Praying for an insurance miracle and the signs that we are headed in the right direction.
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