My 14 year old nephew...

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/25/2008 9:23 AM (GMT -7)   
Has just been dx with IGA neuropathy (Bergers disease) of the the kidneys. The biopsy sample showed at least 20% of damage
to his kidneys already...
Has anyone else got someone they know with this disease, or does anyone know the rate of progression? Thanks.
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/25/2008 3:52 PM (GMT -7)   
Hi Vicky just read up on it and they say usually it progresses slowly. Hope he's not a smoker. How's he doing? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/25/2008 4:44 PM (GMT -7)   
Hi Gail, no, he's not a smoker, unless he does it on the quiet. I don't think so though. He is 14, but a very young 14.

They were told the dx yesterday, so I think it's still sinking in. They've told him he will be taking pred, and blood pressure meds.
There is still a question mark over whether they start him on Imuran.

It's such a shame, he's a real nice kid...Don't come across many of those these days. His name is Dallas, and he's always concerned
over he's auntie, and grandma....

Thanks so much for getting back Gail, I know I'm not here so often these days... Still waiting on my Lupus problems to be clarified. I
tend to get a little down lately, I guess just so much has happened this year!!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/25/2008 5:14 PM (GMT -7)   
I don't have any experience with Berger's, but reading about it, I saw that two associated diseases are caused by gluten intolerance. Has he been tested for Celiac and gluten intolerance? It won't solve the problem, but it might help avoid others.

Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 9/26/2008 8:13 AM (GMT -7)   
From what I could find it looks like only 20% of cases result in kidney failure and if that did end up the case kidney transplant is an option. Hopefully if never results in that but it looks like there is still some options for him.
Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (23 years old 180lbs). Off predisone and on tysabri 4/3/2008
============================================


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/26/2008 10:47 AM (GMT -7)   
We're hoping that too, although he has a strong paternal history of kidney disease.

Also wondering if this first biopsy result is the deciding factor, or whether the other 2 they took, will indicate anything else...

Thanks for all your answers.
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/26/2008 3:26 PM (GMT -7)   
Hi Vicky he sounds like a sweetie . Hope things get less stressfull for you soon . Your right things have been pretty stressing and I sure hope there is a silver lining here shortly for you and yours. I find trying to get threw a day at a time is all we can do at times. Thinking of you all . lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


JsMom
Regular Member


Date Joined Jul 2006
Total Posts : 57
   Posted 9/29/2008 11:12 AM (GMT -7)   
It's sooo heartbreaking esp when it's a child. I'm keeping him in my prayers. Remember, second opinions are important, being confident in the doctors also, if you're not confident, find another doc. Also be open to university hospitals and doctors, they are usually on the cutting edge of research.

Lots and lots of hugs.....
JsMom

Son, age 9, diagnosed with UC age 4, no relief or at best temporary relief from conventional meds, probiotics, SCD, colectomy with perm. ileostomy 2007. Diagnosed with Crohn's 3/08. Currently on Remicade, fish oil supplements, daily multivitamin, Digestive Advantage chron's colitis formula has no effect, it's like spitting in the ocean.


meowese
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 9/29/2008 3:49 PM (GMT -7)   
Hi! I do not know much about Berger's but be strong. I was on dialysis for 6 months for acute renal failure from HUS and thankfully I recovered full kidney function. I just read that Berger's is slowly progressive kidney disease, but there are treatments to slow the progression and there are always options. Give him a hug for us!
Crohn's (diagnosed in 2006 and currently in remission), severe migraines, Seborrheic Derm., Hemolytic Uremic Syndrome (1994), chronic pain, ulcers/GERD and possibly Fibromyalgia? Medications: Nexium, Pentasa, Cymbalta, Xysal, Yaz, Percocet and Vicodin as needed, Flintstone Vitamins (my favorite part!), calcium and magnesium supplements, vitamin D once weekly. I follow a low fiber, low residue diet.

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 9:53 AM (GMT -7)
There are a total of 2,735,884 posts in 301,336 threads.
View Active Threads


Who's Online
This forum has 151440 registered members. Please welcome our newest member, Ian88.
268 Guest(s), 12 Registered Member(s) are currently online.  Details
MamaLama, Girlie, reminder, BillyBob@388, pmm73, time2reclaim, Fairwind, ks1905, FamilyGuy, pinkroses, Mustard Seed, Traveler


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer