Aa
my daughter died of this suddenly, i just wanna know more
My eight year old daughter suddenly passed away. the dr's said she had strep throat and 2 days later she was gone. her lungs hemmoraged and her kidneys failed. after the autopsy they said she had good pastures syndrome. I just really want to know if it is hereditary and if it is what kind of test needs to be doe to see if my 2 year old can get it or has it. also i want to know if this is something that my child was born with or if something actually caused it. i think that she was born with the gene but it took strep throat to flare it up. if anyone can help me please please write me.
Very sorry to hear about your daughter. I cannot possibly comprehend the pain you must have experienced at her loss.
I would think that you could have the following tests performed to some degree to ease your mind as to other family members suffering, but I'm sure they would not do a kidney biopsy as it has too many risks to begin with. I think in your case I would probably be desperate enough to try to get a geneticist involved considering you have lost a child. For me personally, I have quite a bit if information by learning about family members ailments, including ancestors. That may give you some clues as to whether or not this is highly genetic and how often it might strike. I was surprised to see how much was in my family history that answered a lot of my families ailments.
My son has an appointment with a geneticist because of this fact, and I don't think it would hurt for you to at least attempt to get an appointment. It does take a while to get in to see a geneticist unless you have an emergency, so don't be surprised that you may have to wait a year for an appointment or they may deny you if they don't believe your family is at risk. The key may be to find a researcher or geneticist who is currently studying Good Pasture Syndrome.
Tests for Goodpasture's Syndrome antibodies may also be useful, combined with tests for antibodies to neutrophil cytoplasmic antigens, which are also directed against the patient’s own proteins.
I would think that you could have the following tests performed to some degree to ease your mind as to other family members suffering, but I'm sure they would not do a kidney biopsy as it has too many risks to begin with. I think in your case I would probably be desperate enough to try to get a geneticist involved considering you have lost a child. For me personally, I have quite a bit if information by learning about family members ailments, including ancestors. That may give you some clues as to whether or not this is highly genetic and how often it might strike. I was surprised to see how much was in my family history that answered a lot of my families ailments.
My son has an appointment with a geneticist because of this fact, and I don't think it would hurt for you to at least attempt to get an appointment. It does take a while to get in to see a geneticist unless you have an emergency, so don't be surprised that you may have to wait a year for an appointment or they may deny you if they don't believe your family is at risk. The key may be to find a researcher or geneticist who is currently studying Good Pasture Syndrome.
Tests for Goodpasture's Syndrome antibodies may also be useful, combined with tests for antibodies to neutrophil cytoplasmic antigens, which are also directed against the patient’s own proteins.
Dear cloeybaby
Very very sorry for the lost of your daughter.
My daughter of 5 year old is also experiencing Goodpasture's Syndrome. She was diagnosed at 4yr-2mon back in April 2008, and was luckily treated in time. But she lost 2/3 of her kidney function.
However, 2 months ago, she had a relapse, and her lungs were flooded with her own blood (Pulmonary Edema), and she stopped breathing, in my arms. She was in a cardiac arrest for 5 minutes. Lucky she was already in ICU and she was revived with brain function intact. The doctors put her on heavy dose of steroid, and her blood pressure had been real high. Her kidney function was down to 10%.
Then 1 month ago, she was hit with a seizure that appeared like a stroke. She lost some bodily control for a while. The doctors revived her again in time. She recovered, but lost all of her kidney function.
The doctors have been monitoring her since the initial diagnosis, but the usual blood test indicators were not elevated on her relapse. And she had no prior symptoms, she was even jumping around playing right before the relapse happened. We are very worry about when it may hit again. The doctors do not know either because the disease is so rare. We hope to connect with people of similar cases to know when it may relapse.
We also have a little daughter of 16 months. We take her in for blood drawn every 6 months to monitor her health. So far she is healthy and not appear to have Goodpasture's Syndrome. Researches says:
"The disease is not catching",
"The disease does not usually occur in more than one family member"
But researches also says "reoccurrance is rare". Reoccurrance happened on us.
So be vigilant in monitoring your 2-year old.
Hang in there, and best of luck.
Very very sorry for the lost of your daughter.
My daughter of 5 year old is also experiencing Goodpasture's Syndrome. She was diagnosed at 4yr-2mon back in April 2008, and was luckily treated in time. But she lost 2/3 of her kidney function.
However, 2 months ago, she had a relapse, and her lungs were flooded with her own blood (Pulmonary Edema), and she stopped breathing, in my arms. She was in a cardiac arrest for 5 minutes. Lucky she was already in ICU and she was revived with brain function intact. The doctors put her on heavy dose of steroid, and her blood pressure had been real high. Her kidney function was down to 10%.
Then 1 month ago, she was hit with a seizure that appeared like a stroke. She lost some bodily control for a while. The doctors revived her again in time. She recovered, but lost all of her kidney function.
The doctors have been monitoring her since the initial diagnosis, but the usual blood test indicators were not elevated on her relapse. And she had no prior symptoms, she was even jumping around playing right before the relapse happened. We are very worry about when it may hit again. The doctors do not know either because the disease is so rare. We hope to connect with people of similar cases to know when it may relapse.
We also have a little daughter of 16 months. We take her in for blood drawn every 6 months to monitor her health. So far she is healthy and not appear to have Goodpasture's Syndrome. Researches says:
"The disease is not catching",
"The disease does not usually occur in more than one family member"
But researches also says "reoccurrance is rare". Reoccurrance happened on us.
So be vigilant in monitoring your 2-year old.
Hang in there, and best of luck.
My heart is breaking, reading your post, no one deserves such pain, I am so sorry.
I read on the net this info:
Possible causes are inherited,
exposed to certain chemicals one being a weed killer Paraguat,
and viral infection
Diagnosed,
by blood test,
but sometimes a kidney or lung biopsy is nesesary to check for the harmfull antibodies
Treatment,
oral immunosuppressive drugs,
also a process called plasmapheresis, patients blood is drawn 300ml at a time and the red and white blood cells are seperated and then placed in a plasma substitute and returned to the body.
This info I got was from google goodpasture syndrome.
I have never even heard of this before, again please know how sorry I am, you will be in my thoughts,
I would assume your doctor would refer you to a specialest to have the blood work done on your 2 year old, and you should probably have the test also.
Praying for you,
bdm92
I read on the net this info:
Possible causes are inherited,
exposed to certain chemicals one being a weed killer Paraguat,
and viral infection
Diagnosed,
by blood test,
but sometimes a kidney or lung biopsy is nesesary to check for the harmfull antibodies
Treatment,
oral immunosuppressive drugs,
also a process called plasmapheresis, patients blood is drawn 300ml at a time and the red and white blood cells are seperated and then placed in a plasma substitute and returned to the body.
This info I got was from google goodpasture syndrome.
I have never even heard of this before, again please know how sorry I am, you will be in my thoughts,
I would assume your doctor would refer you to a specialest to have the blood work done on your 2 year old, and you should probably have the test also.
Praying for you,
bdm92
oh my. i am so terribly sorry. i cant even begin to tell you how awful i feel for you. that is something that every parent fears above all else. i will say an extra prayer for you tonight and will remember you ever chance. may God be with you. i know He is. I hope you can let Him comfort you. I know it is so very hard. my goodness. i am so so sorry. take care. I dont know anything of the disease. but i am sure someone will pop in and help. take care now. God Bless...amy
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