Dylan at the beach It’s been extra-long since an update…it has also been filled with lots of up’s and down’s and we wanted to wait it out until we had more info. So much has transpired over the course of these last 3 months, I truly can’t even recall it all. It has seen countless visits to Kaiser, to Stanford Children’s, and of course the usual in-betweens.
At the beginning of the year we mentioned about Dylan’s need for Psychology intervention, discussing further with Immunology Dept, and just trying to get this never ending roller coaster of up/down labs to come to some form of normalcy.
As of today, nothing new in regards to psychological intervention has been figured out. Kaiser doesn’t have anything for him and Stanford is so far away that it would require taking random full days off work and school…it’s just not really feasible to travel hrs on end to talk to someone for less than an hour. Dylan missing school is more of a concern as he needs all the assistance he can get. We are still actively trying to figure something out for him though…just don’t know what yet.
We were fortunate enough to get in with world renowned Immunologist Dr. Kari Nadeau MD, PhD. She is head of the Immunology Dept at Stanford Children’s and director of the Sean Parker Center for Allergy Research at Stanford. She is someone whom we have wanted to talk with again for a very long time. Back in 2012 we met with Dr. Nadeau briefly about Dylan but she felt immunology and how it relates to liver transplantation wasn’t quite in sync at that time. Amber and I have stated over and over, as well as many times on here, that we believe Dylan’s erratic labs and his constantly high Eosinophils were either relating to an Autoimmune issue or something that needed further looking into from Immunology, as those are allergy marker cells. It’s always been an ongoing issue with him. They’d do a liver biopsy and never see rejection cells but they always see a ton of Eos's, which isn’t normal. Back then in 2012, Dr. Nadeau didn’t feel there was a direct correlation…but now flash forward to 2015 and things have changed.
We have had multiple conversations with all of Dylan’s Dr’s, as well as them all having a meeting together to discuss Dylan’s predicament. They all have agreed to look further into this being Dylan’s immune system that’s causing flocculation’s in his liver. Dr. Nadeau also informed us that through these past few years a lot of advancements in medications and research has been made overseas. She informed us that she, like us, believes that Dylan’s system is constantly irritated and revved up due to his extremely high Eosinophils. If they can reduce his Eos's, she’s confident she can make most/if not all of his anaphylaxis go away. The hope is that in reducing his highly allergic cells from constantly being on guard, that it will calm down the rest of his system, and thus calming down the inflammation that seems to come and go in his liver.
The treatment is called Intravenous Immunoglobulin (IVIG, more specifically targeting IL-5) infusions. In short, they will be injecting IG plasma that would be specific to killing off Dylan’s Eos’s, where as in other forms of this treatment it’s used for supplementation/replacement therapy. The thought is, every 3-4 weeks Dylan would have to go to the hospital and have these treatments (they take 2-4 hrs). The desired outcome is to be methodical in lowering (killing off) the current Eos’s in his blood to that of a normal person (6% and under)…in doing so, hopefully it will settle his system down and he can go about his life a bit less susceptible to normal elements, every cold turning into Pneumonia, or causing a bump in his labs…which in turn causes inflammation in his liver.
There are a few downsides though, often IVIG treatments are for a very long time (at min years) and often up to the rest of your life. The other being, this process of what they want to do to Dylan isn’t approved in the US, although it’s used for different conditions, it’s not approved for use of Eosinophilia. Dr. Nadeau is contacting the FDA for approval to use the medication/procedure over here for Dylan. We are currently awaiting word back on if they will allow this for him.
We have lots of hope but at same time lots of worry as well. The hope of course is…it all works out as it should on paper. The worry/fear is, what if it doesn’t…how do they undo it. What if his body goes on attack mode and things get worse and we end up on a destructive path that nobody has firsthand experience with. The hopeful side of us has to still be diligent about asking the pertinent questions. But we are bracing for a hard summer, hopefully one that sees positive results.
Thanks for keeping up on Dylan; I know he appreciates it as well. Every so often I catch him on his computer looking at his site and reading through what we’ve written. Hard to believe in less than a month our little man is turning 10 years old. Wish us luck as we embark on this next chapter of our lives.
-Noah
At the beginning of the year we mentioned about Dylan’s need for Psychology intervention, discussing further with Immunology Dept, and just trying to get this never ending roller coaster of up/down labs to come to some form of normalcy.
As of today, nothing new in regards to psychological intervention has been figured out. Kaiser doesn’t have anything for him and Stanford is so far away that it would require taking random full days off work and school…it’s just not really feasible to travel hrs on end to talk to someone for less than an hour. Dylan missing school is more of a concern as he needs all the assistance he can get. We are still actively trying to figure something out for him though…just don’t know what yet.
We were fortunate enough to get in with world renowned Immunologist Dr. Kari Nadeau MD, PhD. She is head of the Immunology Dept at Stanford Children’s and director of the Sean Parker Center for Allergy Research at Stanford. She is someone whom we have wanted to talk with again for a very long time. Back in 2012 we met with Dr. Nadeau briefly about Dylan but she felt immunology and how it relates to liver transplantation wasn’t quite in sync at that time. Amber and I have stated over and over, as well as many times on here, that we believe Dylan’s erratic labs and his constantly high Eosinophils were either relating to an Autoimmune issue or something that needed further looking into from Immunology, as those are allergy marker cells. It’s always been an ongoing issue with him. They’d do a liver biopsy and never see rejection cells but they always see a ton of Eos's, which isn’t normal. Back then in 2012, Dr. Nadeau didn’t feel there was a direct correlation…but now flash forward to 2015 and things have changed.
We have had multiple conversations with all of Dylan’s Dr’s, as well as them all having a meeting together to discuss Dylan’s predicament. They all have agreed to look further into this being Dylan’s immune system that’s causing flocculation’s in his liver. Dr. Nadeau also informed us that through these past few years a lot of advancements in medications and research has been made overseas. She informed us that she, like us, believes that Dylan’s system is constantly irritated and revved up due to his extremely high Eosinophils. If they can reduce his Eos's, she’s confident she can make most/if not all of his anaphylaxis go away. The hope is that in reducing his highly allergic cells from constantly being on guard, that it will calm down the rest of his system, and thus calming down the inflammation that seems to come and go in his liver.
The treatment is called Intravenous Immunoglobulin (IVIG, more specifically targeting IL-5) infusions. In short, they will be injecting IG plasma that would be specific to killing off Dylan’s Eos’s, where as in other forms of this treatment it’s used for supplementation/replacement therapy. The thought is, every 3-4 weeks Dylan would have to go to the hospital and have these treatments (they take 2-4 hrs). The desired outcome is to be methodical in lowering (killing off) the current Eos’s in his blood to that of a normal person (6% and under)…in doing so, hopefully it will settle his system down and he can go about his life a bit less susceptible to normal elements, every cold turning into Pneumonia, or causing a bump in his labs…which in turn causes inflammation in his liver.
There are a few downsides though, often IVIG treatments are for a very long time (at min years) and often up to the rest of your life. The other being, this process of what they want to do to Dylan isn’t approved in the US, although it’s used for different conditions, it’s not approved for use of Eosinophilia. Dr. Nadeau is contacting the FDA for approval to use the medication/procedure over here for Dylan. We are currently awaiting word back on if they will allow this for him.
We have lots of hope but at same time lots of worry as well. The hope of course is…it all works out as it should on paper. The worry/fear is, what if it doesn’t…how do they undo it. What if his body goes on attack mode and things get worse and we end up on a destructive path that nobody has firsthand experience with. The hopeful side of us has to still be diligent about asking the pertinent questions. But we are bracing for a hard summer, hopefully one that sees positive results.
Thanks for keeping up on Dylan; I know he appreciates it as well. Every so often I catch him on his computer looking at his site and reading through what we’ve written. Hard to believe in less than a month our little man is turning 10 years old. Wish us luck as we embark on this next chapter of our lives.
-Noah
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