Ada is no longer responding to steroid treatment, so additional measures are now needed. Each has it's benefits, and a slew of side effects, to be considered. (At this point there has not been any discussion about the need for a kidney biopsy)
Thankful for all blessings - Ada's Aunt C:-), who also suffers from an auto-immune disease & happens to be a nurse, was up at the hospital for some bloodwork and dropped by to say hi. She was there when the Dr came and was able to ask a lot of questions that we wouldn't have thought to ask, because she is on or will potentially be taking the same medication treatments at some point and time. It was really a blessing because she was able to call me afterwards and explain things so much better and answer questions that I had.
The treatement that is most strongly recommended by the Dr (and after all consideration will be the treatment option of our choice) is a short (2 month), low dose course of cytoxin. Cytoxin is a chemo drug and with that would have the side effects of hair loss, infirtility (will not be an issue for a child this young), and reduced white blood cell count leaving her more suseptable to illness and infections.
This treatment is a one time shot. It would take place in addition to the traditional prednisone treatment and the goal is for it to allow her to complete the weening process, which she has not been able to do up to this point, and eliminate or greatly reduce the relapses. She would not be able to come completely off the prednisone while on cytoxin because while she is on the cytoxin she would need the steroid to aid her immune system. (Isn't it interesting how everything is inter-related)
She would have weekly blood tests to watch her white blood cell count. (That is what Ada is most concerned about - the needles). If her cell count drops too low they would have to stop or delay treatment.
Illness can be a serious concern. Thankfully, because we homeschool, she will not be exposed to the hundreds of other kids who come to school when they should be at home in bed. Also, because she normally does a lot of running and playing out of doors she has a pretty good immune system to begin with. And this is a good time of year, before all the nasty colds and stuff are in full swing. So I'm hoping this all bodes well for her to be able to do this treatment without complications.
Something I do need to ask them about is immunizations. She is current, but her new baby brother and her little sister are due for some immunizations. I need to know if there is a concern of her contracting the diseases from any live vaccines. If so, we will have to talk to the Dr about a modified schedule or temporarily postponing the vaccinations until her immune system is back up to par.
Other options we were given were immune suppressent drugs used most often to counter transplant rejection. If the cytoxin does not work these would be the next steps we could consider. These included:
IV steroid treatment - This treatment would include 6 doses and then a taper process. It would take about 2 years for the treatment to take place.
Cyclosporin - it is a 1 yr treatment, one side effect would include hair growth everywhere except the top of her head, and it has the potential to be toxic to the kidneys.
Celcept - is an option that has not been well studied yet in Nephrotic Syndrome.
Prograf - don't have a lot of information on this either.
So from our understanding we will be doing the Cytoxin (which is actually a brand name and sounds awful - the drug name is cyclophosphamide(sp)) It is a relatively short term treatment. They have seen a lot of success with it, usually allowing the patient to be relapse free for 2 years or longer w/ fewer additional relapses.
The Dr asked if there was any chance we noticed the relapses occuring in combination with something (most children relapse with the onset of an illness). Ada's initial and relapses appear to be completely idiosomatic, occuring without any reason. The only thing I could see that is tripping this would be seasonal allergies, such as hayfever. She has not been sick at all this year - with the exception of this Nephrotic Syndrome (so that is a blessing too.)
Thankful for all blessings - Ada's Aunt C:-), who also suffers from an auto-immune disease & happens to be a nurse, was up at the hospital for some bloodwork and dropped by to say hi. She was there when the Dr came and was able to ask a lot of questions that we wouldn't have thought to ask, because she is on or will potentially be taking the same medication treatments at some point and time. It was really a blessing because she was able to call me afterwards and explain things so much better and answer questions that I had.
The treatement that is most strongly recommended by the Dr (and after all consideration will be the treatment option of our choice) is a short (2 month), low dose course of cytoxin. Cytoxin is a chemo drug and with that would have the side effects of hair loss, infirtility (will not be an issue for a child this young), and reduced white blood cell count leaving her more suseptable to illness and infections.
This treatment is a one time shot. It would take place in addition to the traditional prednisone treatment and the goal is for it to allow her to complete the weening process, which she has not been able to do up to this point, and eliminate or greatly reduce the relapses. She would not be able to come completely off the prednisone while on cytoxin because while she is on the cytoxin she would need the steroid to aid her immune system. (Isn't it interesting how everything is inter-related)
She would have weekly blood tests to watch her white blood cell count. (That is what Ada is most concerned about - the needles). If her cell count drops too low they would have to stop or delay treatment.
Illness can be a serious concern. Thankfully, because we homeschool, she will not be exposed to the hundreds of other kids who come to school when they should be at home in bed. Also, because she normally does a lot of running and playing out of doors she has a pretty good immune system to begin with. And this is a good time of year, before all the nasty colds and stuff are in full swing. So I'm hoping this all bodes well for her to be able to do this treatment without complications.
Something I do need to ask them about is immunizations. She is current, but her new baby brother and her little sister are due for some immunizations. I need to know if there is a concern of her contracting the diseases from any live vaccines. If so, we will have to talk to the Dr about a modified schedule or temporarily postponing the vaccinations until her immune system is back up to par.
Other options we were given were immune suppressent drugs used most often to counter transplant rejection. If the cytoxin does not work these would be the next steps we could consider. These included:
IV steroid treatment - This treatment would include 6 doses and then a taper process. It would take about 2 years for the treatment to take place.
Cyclosporin - it is a 1 yr treatment, one side effect would include hair growth everywhere except the top of her head, and it has the potential to be toxic to the kidneys.
Celcept - is an option that has not been well studied yet in Nephrotic Syndrome.
Prograf - don't have a lot of information on this either.
So from our understanding we will be doing the Cytoxin (which is actually a brand name and sounds awful - the drug name is cyclophosphamide(sp)) It is a relatively short term treatment. They have seen a lot of success with it, usually allowing the patient to be relapse free for 2 years or longer w/ fewer additional relapses.
The Dr asked if there was any chance we noticed the relapses occuring in combination with something (most children relapse with the onset of an illness). Ada's initial and relapses appear to be completely idiosomatic, occuring without any reason. The only thing I could see that is tripping this would be seasonal allergies, such as hayfever. She has not been sick at all this year - with the exception of this Nephrotic Syndrome (so that is a blessing too.)
1 comment:
It sounds like Gray and Ada are following pretty close. He relapsed again for no reason stayed steady at a +++ and has now started the cyclophospamide. Feel lucky you are able to home school her. This is one thing I'm really worried about. The news on your page sounds a lot more promising than everything I've read. I just need to stay off the internet and deal with things as they come I guess,. Because as soon as I start reading I get more worried I made the wrong decision. Please let me know how she is doing on this med. and I will keep you updated on any changes in Gray as well. As for the cyclosporine If you have any ?'s you can email me and I'll be glad to talk he was on this last year. My prayers are with you and the family. By the way how's the little one doing?
Wendi :)
ashtonafb@cox.net
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