Arpkd and Reishi Mushrooms?

Do you have a young child or teenager with ARPKD or ADPKD? Talk to other parents who are caring for children with PKD.
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Posts: 1
Joined: Sat Dec 13, 2014 11:47 pm

Arpkd and Reishi Mushrooms?

Postby kbcartwright » Sun Dec 14, 2014 12:07 am

Hello all, I am new here today. I have a 3yr old diagnosed w ARPKD. Totally normal pregnancy (awesome) no family history, long natural childbirth, extreme shock when we ended up in ICU at 8 weeks because of a virus which caused high fever and dehydration, after 6 days we were sent home to come back in 2 mo's for a check up. No diagnosis. Scans did show enlarged kidneys. The Dr's assumed it was related to excessive fluids due to dehydration. My husband and I recommended an abd. U/S (we do not come from a medical background, we thought maybe pyloric valve which is why we requested this, she was vomiting) which showed enlarged echogenic kidneys with innumorous cysts in both kidneys and liver. Took her to one of the top nephrologists in country, could not confirm diagnosis 100%, could be a better case scenario,mild end of spectrum, if that. Fought with insurance co. for genetic testing for 4 months, found UAB to do the test and interested in our case tested my husband and myself. Turns out he has 2 genes, I have 1, and yes our daughter has ARPKD . Outside of her cysts, thank god, she has not other symptoms. If it was not for the abdm. US we would never known. She lives a normal healthy life. Because we know this we take her to her Nephrologist & Hepatologist (she has CHF) several times a year for monitoring.
Long story short, my husband and I try to take a holistic approach to things; we are very conscious of what we consume, where our food came from, etc. We juice, our daughter juices with us, we steer clear from high sodiums, too much protein, animal fats, too much sugar, etc. We've recently discovered REISHI mushrooms and have read about their healing properties. We (my husband and I only) consume them daily. We have not started our daughter on the supplements yet, until we review with her Dr's in January but I am curious, does anyone here know anything about medicinal mushroom extracts in specific reishi (lingzhi) mushrooms and Cordyceps? They have been studied to heal chronic kidney disease. I have searched the PKD foundation and have found nothing about them. Any information would be helpful. Much appreciated!

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