Owners Instruction Manual?

• By nathalie1
• Posted November 17, 2007 at 11:17 am

I think it's so true....That's why I love this website!
I'm from Canada and you guys are lucky to have the Boston hospital with so many excellent nephrologists! It's even harder to get GOOD information around here....that's why I'm looking at this website.....since even our nephrologists look towards your specialists for answers and protocols for our kids!! It's such a hard disease to deal with when there's still so much still unknown!
It's great to be able to get moral support, if nothing else at least we know we're not alone!
Thanks!
Nathalie

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• By SmileGodLovesYou
• Posted December 4, 2007 at 8:02 am

I think a book would be awesome. I have to read the Bible for comfort and God's perspective. I am a nurse so understand (all too well) most of the medical books information but still they are not a "how to book". Like, how to stay positive when things keep going wrong and quality of life is a battle. My daughter is 15 and diagnosed with FSGS this year. She started with minimal change ns last summer.


I wish there was some stability in this disease process for my daughter. She was doing well on prednisone 75mg every other day and cyclosporin until her liver acted up and she became itchy with high bilirubin. Now on Prograf and seems to have a lot of side effects. It may be just the FSGS but finding it difficult to watch her lose energy, gain fluid, and be so miserable with headaches and diarrhea. Wishing she could have weekly albumin but the doctors at the University of Minnesota prefer albumin only it absolutely necessary.

God Bless You and your child. Appreciate this site and finding that I need more support as this illness progresses.

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• By Rileys-parents
• Posted October 1, 2008 at 10:15 am

Hey there,

New to the site so just reading this now but the book idea is great - I justed started a journal with what happens when he gets sick - his neph appts - his ped appts - what meds he is on - weight- bp- height - everything so maybe it will help one day with our treatment and maybe some day someone elses but I guess we will see about that

Mark

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• By AmosB
• Posted October 1, 2008 at 12:03 pm

WELCOME to a great site. You can find a wealth of information here. If you can't find an answer to a question Just ask!!! It is great you started to keep track of his progress. I even include/track her protein, have a place for lab work, and chart when she gets sick. What med's I have given, what med's have increased and decreased, ect. Her chart at the Nephrologist gets purged often and he flat out asks me about some of the medication changes. I think I do all the keeping track of stuff because it is the only way I feel like I can have control over our situation.
Best of luck to you. Your son is so handsome!!!
A

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• By Rileys-parents
• Posted October 2, 2008 at 10:01 am

Cool I will add in those things I do not have. Great idea. Riley said awwww tell her thank you. I hope all goes well with you and your family.

Mark

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• By magdelena
• Posted October 3, 2008 at 12:08 pm

When my son was first diagnosed, I found myself wishing the same thing! Where is the manual on this?

I understand the idea of keeping track of protein levels, BPs, etc., but we have opted not to do that. When we went to Stanford, the Nephrologist there suggested that we track protein levels daily, but our doctor at Kaiser advised against it. He said that we would make ourselves crazy because one day it might be up and the next day it is down. The best indicator of whether or not my son is spilling protein is his legs....if they are big and swollen, there is protein, if not, then he's doing well. (For the past two weeks he has had minimal edema in his legs--woo hoo!) We do write down his BP once a day, but that is it.

I think one thing about this disease is that you have to just take things one day at a time. You can't analyze things too much or read into things too much. I come to this website (and only this website) because it is the only online information I have found that tends to be a positive, productive source of information. I do NOT do Google searches because I end up crying! There is a lot of negative info out there....I choose to focus on only the good, as I think so many people here do too.

So...maybe we should put together a book about what has worked for all of us! It would be really easy. We could set it up through Google docs. Everyone gets access to the document and we just add our stories, successes, hopes and experience. I would be happy to proofread and edit the "book" and then we could all brainstorm about how to get it published. Any takers???

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• By DonnaColucci
• Posted October 4, 2008 at 11:03 am

You know, that is ironic...I have written an inspirational book about NS and still await for a break and have it published.
I, at the time of my son's illness, back in 96, I didn't even know what journaling was....you are so lucky to have that avenue to vent....It took me many years to connect with people who understood, and can comfort in some way.
I today believe that daily meditation, throw in some yoga, and we all can make our dreams come true...Maybe we should all compile of a "manual" and have our ped. doctors, distribute.
I know that when a child is diagnosed at HUMC, I am on a information phamphlet that is given to the parents. It reads something like, For information on NS , please contact Donna Colucci, North Jersey Chapter NephCure Foundation.
Would love to talk about a manual...book....for children, perhaps...
Donna

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