6 year old niece

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jessica76
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/27/2008 4:16 PM (GMT -7)   
Hello all,
My name is Jessica and my beatiful little neice has been diagnosed with lupus. This has all happened so fast. She was diagnosed after haveing a kindey biopsy do to poor kidney function. She is in an amazing hospital with great doctors, but her mother and I are still very lost to what this all means. We are both new to this disease and how it works. I am looking for anybody that can help us understand what we are up against. I have so many questions that I can not list them all. The most important one for me is with her already having kidney problems what are the chances of her continuing to have theses types of issues.

Shelter
Regular Member


Date Joined Feb 2007
Total Posts : 155
   Posted 4/27/2008 7:20 PM (GMT -7)   
Helloo Jessuca
asking questions is a good place to start
Sorry to hear about your neice....
My son had a kidney biopsy when he was 3 years old
he had nephrotic syndrome
was treated with prednisone.. for years
my birth Mother had lupus
and later in years i have found out his problem is "similar"
in the same family as lupus...
as is my Sjorgrens

auto immune disease... unfair

I hope that your neice has a good team of peditricans/ specialists...
ask questions
seek for answers
.............................................. &
please know others care
They that wait upon the Lord shall renew their Strength, they shall mount up on wings as eagles, they shall run & not grow weary, they shall walk & not faint..."  Ish   40 v. 31 
~
Sjrogrens Syndrome, Asthema, Chronic Fatigue, Chronic Pain, Head aches, Migraines, Gastro Intestinal ProblesmFibro Myalgia , Kidney Stones, Esophegial Spasms,(SI joint,   low mechanical back pain..L4 & L5 Vertebrae Misaligned,  Spinal Stenosis and Degenerative Disc Disease, Bulging Disc, anterolisthesis L4 L5L4 -- S1 pain  caused by osteoarthristis ,bone spurs, causing pinching or pressure on spinal chord 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/27/2008 7:55 PM (GMT -7)   
Hi Jessica,

Welcome to the forum. I am so sorry to hear about your young niece. The good news is that she was diagnosed early. Many lupus patients wait for many years for doctors to finally diagnose them. Early treatment is key when there is organ involvement and your nieces doctors are on the ball.

There are some links in my signature. The one called "lupus resources" contains a post about diagnosing children. If you click that link, there is a doctor's name at the bottom of the article. Maybe you could "Google" his name for more specific info on children.

Your niece is so young to be dealing with this. I'm sorry I can't be more help about children specifically.

But hopefully the other information available here will be helpful. Of course you can ask questions when you are ready.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 4/27/2008 7:59 PM (GMT -7)   
Jessica,
I am so sad to hear about your neice. You all must be terrified. I am so thankful she is in a great place with great docs. That means the world! I have lupus with kidney involvement. I'm sure it is quite different with children. I know I have read some very promising studies about treatment of kidney disease in children with lupus. They have had great success with it in both the short and long term. Please know that I will be holding your neice up in prayer. Your neice is in great hands with God and her docs. Her parents are the ones who will need alot of support and understanding! My advice is don't be afraid or too intimidated to ask questions about her treatment options and prognosis. God Bless You all, Judy

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/28/2008 7:32 AM (GMT -7)   
Hi Jessica and welcome. I'm so sorry to hear about your neice's diagnosis, especially at such a young age. I agree with the others that now that your neice is diagnosed, she has a good chance for treatment that should help. My 10 year old son got sick at around age 7 and the docs are still trying to determine if it's juvenile arthritis or more of a connective tissue disease like lupus. It's so hard to watch him go through the rough times and flares, but lately he's been doing pretty well. The biggest thing with kids is trying to teach them to listen to their bodies and rest if they are feeling rough. I also want to recommend finding a really good pediatric rheumatologist if you haven't already, since treating children with lupus is different than treating adults.

Please ask any questions you have. You and your neice and her family are in my thoughts and prayers.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Co-Moderator: Lupus and CFS Forums



Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 4/29/2008 10:17 AM (GMT -7)   
All the best to your young neice... sounds like the place she is going to is right on top of things.....
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