Another false read on biopsy, no clue what he has

• By LauriJean
• Posted March 14, 2008 at 9:45 am

I know how tough it can be to want answers and not have them. We have some clues as to a diagnosis on my son who has been dealing with nephrotic syndrome and FSGS like symptoms since age 2. Many times while immersing him in tubs to control his excess fluid and getting albumen 3x/week I felt desperate, helpless and didn't know where to turn.

However, he is now 9 and doing excellent. This is his second year in public school. We still don't know what a firm diagnosis is beyond that he has some signs on IgM nephropathy and messangial proliferation - each biopsy shows something different. However, working closely with our doctors and being willing to try a wide variety of protocols until we got the protocol that works for him was well worth it. I consider these past 7 years a wonderful gift despite all the heartache.

I know it seems so hard to go through right now, and believe me I have been there. You need to remain hopeful for your son and investigate therapies and research so you can be educated on options when your doctors present them to you. Be your child's advocate.

Look for the positive. Your docs are willing to admit they aren't certain what's going on. That means they aren't just dosing your child with no plan. They are also willing to seek out other expert opinion. This is good. I don't think parents realize how much dealing with nephrotic syndrome and FSGS like symptomologies is a process of international collaboration among some of the best minds in nephrology. Thankfully they are willing to do this and share experiences, often only with a small number of case studies.

I wish you the best with your child. For us, swimming and full body immersion helped control edema in conjunction with the albumen infusions. If you would like more info on immersion therapy and what we found works, I am happy to elaborate.

I wish you well.

• Reply
• Report post

• By Shawnsmom
• Posted March 14, 2008 at 4:32 pm

I would love to know more about your son's case and about full body immersion. My son does have a picline in his arm for the albumin treatments, so I am not sure if this is still possible. Also, is your son in remission? I would love to hear more about your positive story, I could use some hope right now... thanks!

• Reply
• Report post

• By AmosB
• Posted March 18, 2008 at 9:12 pm

Thinking of you and your son. May we all hold him up in our thoughts and prayers.
A

• Reply
• Report post

Add to the discussion