What IVIG will look like and what we can expect
I talked with Dr. G on Saturday afternoon. He called us on Friday night as we were on our way to a baseball game, so he told us if our team won, he would call us Saturday afternoon. Well, we lost...but he still called. :)
When I initially talked with his nurse two weeks prior, she told me that she wanted to reiterate that Dr. G didn't "necessarily think it was going to work." Both Peter and I were dumbfounded-WHY would we put Hunter through a procedure that he didn't think would work?
So that was my first question for him during our phone call. He said, "No, it's not that I don't think it could work." When he looks at treatment with statistically the highest likelihood of working, IVIG is the least in his career. Several patients fall in the gray area- they see a little progress, but it's not a great amount. Sometimes, though, he hits a "home run" and it works. He said Hunter's case could very well work and have a great response. He said that IVIG has been the "go-to" treatment because of historical reasons- it is used by default because it is what has worked in the past.
In regards to the B-Cell therapy that he had recommended (the one with several heavy duty risks), it would wipe out the B-cells for six months; B-Cells are the ones responsible for making the antibodies that are confused in Hunter's body. It definitely makes sense, that if you take away those B-cells, new, healthy ones would regrow in about six months and he would function in a completely different state- his little body would have healthy red blood cells again.
IVIG works according to two theories:
1) All of the antibody producing cells have a "thermostat" around them. If you flood the area with new, healthy cells, the thermostat shuts off because there are so many good cells- just like if your house is cool enough, it will stop the air conditioning. Those confused cells would be turned off.
2) Some of the blood cells just don't go back to producing antibodies once IVIG has taken place.
He wanted to explain again that IVIG does NOT kill any cells- we are just hoping it reboots his system.
I asked him about the steroids a bit more- if we were successful with the steroid route, shouldn't IVIG work? He explained that that is not necessarily the cases; the two therapies work in totally different ways. They are different mechanisms: the steroids suppressed the immune system to decrease the production of cells, but IVIG doesn't suppress- it floods the confused red blood cells with healthy ones.
The next subject we covered dealt with scenarios post-treatment. He provided four:
1) Things get worse (he said the likelihood is very slim, given the positive result we had with the steroids)
2) No improvement is noted.
3) Slight improvement
4) Total Recovery
He said if we land in the middle ground, then maybe we aren't dealing solely with the immune system, and we are dealing with learned behaviors. Honestly, I can't see this being the case. If we were only dealing with learned behaviors, our awesome therapists in the IOP would have been able to stabilize him and make progress...after strep in February, his progress stalled and regressed 180 degrees.
Dr. G said that if we do get improvement, it isn't completely mediated by the drug- drugs can never claim full credit for any intervention. We would have to continue with therapy as well. The goal of IVIG or any of these autoimmune interventions is to create an environment that is susceptible to intervention and NOT rewire the brain. The remapping/rewiring still falls on our shoulders through our therapies and diligence at home.
And then my biggest concerns: complications/risks.
He said that we are exposing him to treatments, and there are not any interventions that don't come with potential risks. Typical side effects include headache (most common), nausea, and vomiting. Those I can handle (and most importantly, so can Hunter). Running the drip as slow as they plan, and using Gamunex, the "Cadillac brand" of IVIG, which is the most filtrated and comes with the least side effects, hopefully will not cause him any post-discomfort.
The main risks were the following:
1) Excessive Protein load to the kidneys. Too much protein is not good for the kidneys- however, he has only seen this (on rare occasions) in patients over 60, who most likely had kidney issues prior to infusion.
2) Pulmonary Risk: He has never seen this or heard of this in his experience, and he isn't worried about this blood flow issue.
He wanted to remind me that this is a blood product, not a transfusion. The risk for HIV or other diseases is excessively low. It is more of a theoretical risk, due to a blood exchange.
SO...our treatment regimen would mimic the following schedule:
1X/mo for 3 months
If successful, then:
3X/6 months (every other month)
4X/12 months
We will continue to decrease until his body goes into a natural state of remission. After awhile, the treatments will just be for maintenance.
He wants us to be committed to three months, if we are going to make the decision to go ahead and do the IVIG. He said we might not get any improvements the first month, but that is not enough to claim it as an unsuccessful treatment. We will follow up with him two weeks post third transfusion, and re-evaluate based on data and outcomes. At that point, we would determine if the benefits outweigh the treatments.
So many things on the table. So many thoughts running through our heads. We took the children to a Special Needs night at a local church, where the fantastic volunteers watch your special needs child and siblings for FREE to give us parents a night out. Peter and I went to our favorite restaurant, notepad in hand, and talked through all of the above information.
We both have very different worries. Peter is more concerned about the effects post-treatment; that is, putting him through three months of infusions and not seeing any results.
I can handle the post. The initial drip and the possible reactions, his discomfort, his unwillingness to leave the needle in his arm...and his pleas for me to help him weigh heavily on my mind. I remember sitting with him for his EEG and the painstaking cries and "HELP ME MOMMY! GET ME OUT OF HERE!" as he was strapped to a papoose to read his brain waves. It was enough to almost pull him out of there and throw in the towel.
But as Peter and I both contemplated, shared our concerns, our worries, and our fears, we both came to the conclusion that we owe it not only to Hunter, but to our family, to give this a shot.
We could be giving him the chance to freely enjoy life again, without his brain feeling like it is on fire.
We know we can't expect 100% recovery. But we can expect that one day, Hunter will look us in the eyes and thank us for never giving up hope, never stopping to believe in him, and giving him the chance at healthy living.
When I initially talked with his nurse two weeks prior, she told me that she wanted to reiterate that Dr. G didn't "necessarily think it was going to work." Both Peter and I were dumbfounded-WHY would we put Hunter through a procedure that he didn't think would work?
So that was my first question for him during our phone call. He said, "No, it's not that I don't think it could work." When he looks at treatment with statistically the highest likelihood of working, IVIG is the least in his career. Several patients fall in the gray area- they see a little progress, but it's not a great amount. Sometimes, though, he hits a "home run" and it works. He said Hunter's case could very well work and have a great response. He said that IVIG has been the "go-to" treatment because of historical reasons- it is used by default because it is what has worked in the past.
In regards to the B-Cell therapy that he had recommended (the one with several heavy duty risks), it would wipe out the B-cells for six months; B-Cells are the ones responsible for making the antibodies that are confused in Hunter's body. It definitely makes sense, that if you take away those B-cells, new, healthy ones would regrow in about six months and he would function in a completely different state- his little body would have healthy red blood cells again.
IVIG works according to two theories:
1) All of the antibody producing cells have a "thermostat" around them. If you flood the area with new, healthy cells, the thermostat shuts off because there are so many good cells- just like if your house is cool enough, it will stop the air conditioning. Those confused cells would be turned off.
2) Some of the blood cells just don't go back to producing antibodies once IVIG has taken place.
He wanted to explain again that IVIG does NOT kill any cells- we are just hoping it reboots his system.
I asked him about the steroids a bit more- if we were successful with the steroid route, shouldn't IVIG work? He explained that that is not necessarily the cases; the two therapies work in totally different ways. They are different mechanisms: the steroids suppressed the immune system to decrease the production of cells, but IVIG doesn't suppress- it floods the confused red blood cells with healthy ones.
The next subject we covered dealt with scenarios post-treatment. He provided four:
1) Things get worse (he said the likelihood is very slim, given the positive result we had with the steroids)
2) No improvement is noted.
3) Slight improvement
4) Total Recovery
He said if we land in the middle ground, then maybe we aren't dealing solely with the immune system, and we are dealing with learned behaviors. Honestly, I can't see this being the case. If we were only dealing with learned behaviors, our awesome therapists in the IOP would have been able to stabilize him and make progress...after strep in February, his progress stalled and regressed 180 degrees.
Dr. G said that if we do get improvement, it isn't completely mediated by the drug- drugs can never claim full credit for any intervention. We would have to continue with therapy as well. The goal of IVIG or any of these autoimmune interventions is to create an environment that is susceptible to intervention and NOT rewire the brain. The remapping/rewiring still falls on our shoulders through our therapies and diligence at home.
And then my biggest concerns: complications/risks.
He said that we are exposing him to treatments, and there are not any interventions that don't come with potential risks. Typical side effects include headache (most common), nausea, and vomiting. Those I can handle (and most importantly, so can Hunter). Running the drip as slow as they plan, and using Gamunex, the "Cadillac brand" of IVIG, which is the most filtrated and comes with the least side effects, hopefully will not cause him any post-discomfort.
The main risks were the following:
1) Excessive Protein load to the kidneys. Too much protein is not good for the kidneys- however, he has only seen this (on rare occasions) in patients over 60, who most likely had kidney issues prior to infusion.
2) Pulmonary Risk: He has never seen this or heard of this in his experience, and he isn't worried about this blood flow issue.
He wanted to remind me that this is a blood product, not a transfusion. The risk for HIV or other diseases is excessively low. It is more of a theoretical risk, due to a blood exchange.
SO...our treatment regimen would mimic the following schedule:
1X/mo for 3 months
If successful, then:
3X/6 months (every other month)
4X/12 months
We will continue to decrease until his body goes into a natural state of remission. After awhile, the treatments will just be for maintenance.
He wants us to be committed to three months, if we are going to make the decision to go ahead and do the IVIG. He said we might not get any improvements the first month, but that is not enough to claim it as an unsuccessful treatment. We will follow up with him two weeks post third transfusion, and re-evaluate based on data and outcomes. At that point, we would determine if the benefits outweigh the treatments.
So many things on the table. So many thoughts running through our heads. We took the children to a Special Needs night at a local church, where the fantastic volunteers watch your special needs child and siblings for FREE to give us parents a night out. Peter and I went to our favorite restaurant, notepad in hand, and talked through all of the above information.
We both have very different worries. Peter is more concerned about the effects post-treatment; that is, putting him through three months of infusions and not seeing any results.
I can handle the post. The initial drip and the possible reactions, his discomfort, his unwillingness to leave the needle in his arm...and his pleas for me to help him weigh heavily on my mind. I remember sitting with him for his EEG and the painstaking cries and "HELP ME MOMMY! GET ME OUT OF HERE!" as he was strapped to a papoose to read his brain waves. It was enough to almost pull him out of there and throw in the towel.
But as Peter and I both contemplated, shared our concerns, our worries, and our fears, we both came to the conclusion that we owe it not only to Hunter, but to our family, to give this a shot.
We could be giving him the chance to freely enjoy life again, without his brain feeling like it is on fire.
We know we can't expect 100% recovery. But we can expect that one day, Hunter will look us in the eyes and thank us for never giving up hope, never stopping to believe in him, and giving him the chance at healthy living.
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