First I have to say I have children and when I read your post i was truly heartbroken for you and your family and I felt like crying. I had never heard of this syndrome before so I felt the need to learn about it. I know it will be very emotional and hard for you to read through my response. I hope the information I share with you will help answer at least some of your questions. I also hope that better things come your way.
Good pastures disease is also called Antiglomerular basement antibody disease and glomerulonephritis. It is a rapid progressive autoimmune disease. The bodies own immune system attacks the collagen in the lungs and/or kidneys.
The antibodies can attack either the lungs only, the kidneys only, or both. There are some symptoms that vary(however i may not have included everyone of them). Some symptoms may include:
When the lungs are attacked the air sacs rupture and bleed. Crackling sounds can be heard in the lungs, and a galloping rythm of the heart. Swelling is possible, also coughing up blood, and shortness of breath. When the kidneys are attacked it can cause the body to retain water, less frequent urination, pale skin, difficulty breathing, anemia and fatigue due to anemia, blood in the urine, protein in the urine, foam in the urine and sometimes high blood pressure. The kidneys may fail if the damage is severe.
Some treatments for this syndrome may include medications like prednisone. The other treatments are to repeatedly remove blood plasma and replace it with fluid or more plasma that doesnt have the damaging antibodies in it. In severe cases dialysis and possibly kidney transplant are neccesary. The outcome varies based on the amount of damage to the organs.
Glomerulonephritis can be a complication of streptococcal infections, including strep throat, particularly in children ages 6 to 10. There may be a genetic relationship to susceptability as well. There is a strong possibility that genetics may make it easier for a person to get this disease. The chances of getting it are somewhere between 1 in 100,000 to 1 in 1,000,000.
The causes are not really know for certain. Hydrocarbon solvents(like gasoline) have been said to be a possible cause this syndrome, and mercury may have some influence as well but I only saw that in two articles. They don't really know.
I really do feel for you. Although im not a dr. the information I have provided is very acurate, forward, and verifiable. I hope in some way it brings some closure to all of your questions about your babygirl, and helps you with your other baby girl! My prayers are with you!
Some of the websites I retrieved this information from are listed below just in case you wanted to look into them. However I could not find the site with the exact genetic chromasomes or allels(certain specific DNA) said to be linked to it.
-The acute disease may be caused by infections such as strep throat.
-Glomerulonephritis can be a complication of streptococcal infections, including strep throat, particularly in children ages 6 to 10.
All I can say is, I'm very sorry for your loss, your family is in my prayers.
I'm very sorry to hear about ur little girl hun I myself have Good Pastures and the information that the person gave you is accurate, It makes your lungs bleed and distroys your kidneys you also have to get plasma exchanges for about 2 weeks and lots of steriods.
I went from the March to July fighting with Doctors trying to tell them that there was something wrong but my doctor just said it was depression. I was even sent into hospital and given blood while I was in Hospital I was coughing up blood and they said it was normal with a low blood count. At the end I got fed up and called my mum and her partner to do something about it, they got me into hospital after fighting with the local doctor and thats when they told me I had Good Pasture's Syndrome. The 10 years I've lived on Dialysis and also had a transplant but only lasted 2 years I always wondered what caused it, its just reading the first persons comment that it struck me, well also a programme on last night too, that it was mercury in my fillings in my teeth, My mum, took pinks disease with mercury through teething powder. The question that you asked about is it carried through the family, it is supposed to be.
Will think of you
I'm not sure what to say. That i'm so sorry for your loss doesn't seem enough. My son was diagnosed with Good Pastues in April last year. It only affected his kidney's. He had all the treatment, plasma exchange etc but lost his kidney's we were told after he was disease free for six months they would give him a transplant. He went straight onto dialysis and 4 weeks ago i donated a kidney. We were told because he was young there should be no problems with the transplant. I had a 96percent kidney functio which was really good. The medication they gave him 10days before the transplant made him very sick but the transplant went ahead. He lost 1/3 of the new kidney's function straight away and the remaining 2/3 didnt kick into actio for 4 days. It was horrific. 4 weeks on we have been told that the blood vessel attaching the kidney is blocked therefore blood is not getting to the kidney. They will operate next week. Please god make it work. I cannot imagine how you are feeling with the loss of your child, but my thoughts are with you. God Bless xx
I am so sorry to hear about your daughter. I too was diagnosed last year the disease attacked only my kidneys, but quite aggressively. I am a 52 year old female, no history in my family for this rare disease. I am going for a transplant since I am in end stage renal failure. I have alot of family that wants to donate especially my youngest brother. I feel my illness came on from a virus, possibly two different viruses, I felt like I had the flu and a co-worker came back from Hawaii with a flu virus and within days my immune stystem went into Goodpastures by the time I started running a fever and went to the ER my kidneys were gone. Thank God it did not affect my lungs. I pray every day that it never returns again and my transplant will be a successful one.
how is your son doing? I was diagnosed with Good Pastures last year and will be going through a kidney transplant. I am curious how he is doing from the surgery and the the fix to get the blood to go back through the kidneys.
I am very sorry to hear about your loss. I also was diagnosed with Good Pastures Syndrome. 2 years ago i was very weak and was winded when i went up a flight of stairs. I went to the hospital and they told me i had Good pastures syndrome. After 3 blood tranfusions, dialysis, Being put on steroids and anticancer medication i made it through.. But i to have a lot of questions about the disease and they way i feel sometimes after a long day of work, or Some days i still dont feel like my old self. Does anyone feel the same way sometimes or is it just me?
I was diagnosed with GPS in October 2009, went through 15 plasma exchanges, 5 blood transfusions, steriods, anticancer drugs and other drugs I don't remember. On diaylsis three times a week and have end stage renal failure. I am looking forward to a kidney transplant very shortly possibly in February of this year. I was weak before being treated but was very weak afterwards. I could not walk across the room without running out of breath, my legs gave out on me one day walking across a parking lot. It was very frustrating to not be able to do the things I normally did. It has taken over a year for me to get my strength and energy back. I was hospitalized twice because my right lung filled with fluid, they suspect GPS may have touched on my lungs. I was hospitalized 3 times before that with pnemonia. It has been a battle but I can honestly say I feel wonderful. I have my strength and energy back but has taken over a year. I am not longer having any lung issues or breathing problems. But was also diagnosed with allergic reactions to Heprin, once they stopped giving me heprin my breathing problems went away. I do receive iron in diaylsis on a weekly basis for anemia, without the iron I am sure I would feel fatigued and weak. Your weakness could be from anemia and you can find out from blood tests. Please stay in touch and let me know how things go as I am always curious about others diagnosed with GPS.