C1q nephropathy

September 15, 2008
My 2 year old son was just diagnosed with C1Q Nephropathy after an original diagnosis of Minimal Change Nephrotic Syndrome (confirmed C1Q after a biopsy). If any of you have infomation for parents dealing with this specific type of Nephrotic Syndrome please email me - or if you are a parent with a child with C1Q or you have C1Q I'd love to hear from you. (I live in Canada)

Shannon
valentine@harewaves.net

[bashful1]

Originally Posted by Unregistered

September 15, 2008
My 2 year old son was just diagnosed with C1Q Nephropathy after an original diagnosis of Minimal Change Nephrotic Syndrome (confirmed C1Q after a biopsy). If any of you have infomation for parents dealing with this specific type of Nephrotic Syndrome please email me - or if you are a parent with a child with C1Q or you have C1Q I'd love to hear from you. (I live in Canada)

Shannon
valentine@harewaves.net

Hi Shannon, My name is Holly. I'm 43 and I have c1q nephropathy. I haven't been given too much information on it either but I am being treated for it and my doctor said I am getting better. He has me on a lot of medicine and routine blood work. It is tough to remember everything but it will be the only way I will get better. If you would like to email me and have someone to talk to my email address is Holly022@aol.com. Take care, Holly

I'm 26 and just found out that I have it. They started me on steroids and and tons of other medicine trying to find more info. contactact karinkak2004@yahoo.com I want to know more about what we have and there just isnt any info

[DoriSchatell]

Hi all,

I'm sorry you've been having such a hard time finding information about C1Q nephropathy. I have to admit that I'd never heard of this, and it is, in fact, rare. But there are ways to look for information about rare diseases:

1. Put the search term into Google. If you put "c1Q nephropathy" into Google, 16,400 pages come up, and you can get a very good sense of what it is and how it works.

2. Search the published medical journals (PubMed). These days, anyone can go online (you found your way here!) and search the peer-reviewed published medical journals here: http://www.ncbi.nlm.nih.gov/sites/entrez These articles are going to be in medical jargon, and they can be hard to plow through, but when you're motivated (and you can look up words you don't understand online, too), you can learn a lot of useful things.

I did a PubMed search, and the first article I found said that C1Q is mainly found in children and teens, a little over half of people respond to steroid treatments (and many of the rest to chemotherapy drugs), relapses are likely, and in that particular medical center, 100% of the patients' kidneys survived.

3. Look for who writes the paper. Doctors have different specialty areas, even within a specialty like nephrology. On the article I found, the lead article was Dr. Maria Roberti, a pediatric nephrologist from Livingston, NJ. (http://www.ucomparehealthcare.com/dr...rti_Maria.html) Perhaps your doctor could contact her or another expert you find by looking at who has done research into your illness.

These tips can be used for ANY disease, and I hope they help you.

Hi there again
My original situation (from my original post) has now multiplied x2. My first son was diagnosed with C1Q in September and now his twin brother is showing the same symptoms. We are set up for a biopsy in the next couple months to verify. Our doctors are looking into the genetic side of it now too. If you have any info to pass along to me and my family I would appreciate it.

Shannon
valentine@harewaves.net

I am 40 years old and was told that I have C1q. Is there any adults who would like to talk about treatment and this disease?

My 28 year husband was just diagnosed with c1q about 1 month ago. It was that we applied for life insurance and he got denied was the way we found out about it. It is without a doubt a severe disease to have, but there is a lot of hope too. I have been tring to learn about it. My husbands kidneys are only working about 29% and the protein levrl in his urine is about ten percent the normal amount. His creatinine clearance is between 2.7 to 3.7. He was put on steriods, and antibiotic, and high blood pressure medication. I t has been life changing, but I have some clients that are doctors and the have been able to guide me to good doctors and what questions to ask. He is also on a 60g/day protein diet.
It has been hard we have a seven year old and an 11 month old, but I have been told and have read that most times than not the treatment stablizes the kidney function and possibly improves it. Our Nephrologist told us that they know for sure that his kidneys will never be normal but it is very likely they will stabilize and not have to have dializes and or a kidney transplant.
keep optimistic and research, seek help emotional and medical for the disease

Hi, my name is Shanti and I was diagnosed with C1q when I was 10 years old, I am now 15. It was found during a routine physical from the urine test. I had never shown any symptoms and the doctors said that we caught it very early. After the biopsy confirmed it was C1q I was started on high dose Prednisone (Steroids). On the off-chance that it could be put into remission we tried Cytoxan for the limit of 3 months. No luck. However, I was responding to the steroids pretty well and tested my urine at home everyday and got full blood and urine labs done once a week. I was briefly put on Cozaar for my high cholesterol until it was decided too risky because I was not yet menopausal. I was also taking Enalapril. Although I was responding well to the Prednisone/Enalapril combo I was extremely inflated due to the Prednisone. I was also experiencing mood swings, insatiable hunger (I went from 75-95lbs in 2 months), and obsessive organization/productivity. I was on Prednisone from ages 10-11.5(when I was successfully weaned). In weeks the side effects from the prednisone had gone away and I was back to around 85lbs. In place of the Prednisone I took Cell-Cept, which I like to call the miracle drug. I have taken Cell-Cept and Enalapril from then on and am currently taking 1000mg of Cell-Cept at 5am and 5pm (on an empty stomach) and 15mg Enalapril at breakfast, 10mg at dinner. I have practically no side effects (aside from occasional dizziness), self test my urine about once a month, go in for full blood/urine labs about every three months, and go to the nephrologist twice a year. I probably lost an inch of height from taking the Prednisone but I am currently 64.5 inches and still growing so it doesn't really matter. I would say that my treatment for C1q has been successful and hopefully with its continuation I will never need dialysis or a transplant. I wish everyone the best of luck and feel free to contact me at omshantimarie@me.com, I will do my best to help.

[DoriSchatell]

Hi Shanti,
Wow, I'm impressed at how knowledgeable you are about your kidney problem and its treatment--you're really staying on top of all of the details. I wish the adults we work with were as conscientious as you've been! It's the best way to ensure the best outcomes possible.

Why, thank you! I agree that staying informed really makes a difference.