Here's a strange one for you...

• By AmosB
• Posted April 4, 2008 at 5:00 pm

It's a fine line to travel between parent and advocate. Especially if you are not in that specific field. Make sure to get LOTS of second opinions. Ask for help with an immunologist or even another nephrologist and let them know what you notice. Document it ALL so you can sit down with the calendar and show them, when your child was sick, what meds they were on/dosages, what was effective for them, ect. Let the nephrologist know how you feel, it is hard to not build up resentment towards a doctor who is not listening to your family needs. (Trust me, I know!!) Make sure you emphasis that each child should be treated as an individual, maybe the antibiotics work. Who really knows anyway.
Good luck with the nephrologist,
A

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• By Crowley
• Posted April 5, 2008 at 10:30 pm

We have noticed this same pattern with our daughter. Although she never went into a full remission while she was on the antibiotics she did pee more and her protein would go down some. Our nephrologist agreed to put her on a propyhlactic (not sure spelling is correct) antibiotic now that she is on cytoxan. No remission yet.

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• By GinnyO
• Posted April 5, 2008 at 11:45 pm

Lalo, your observations are fascinating. I would research it and "ask the world." In my research I've read that infections can actually trigger MCD. If you use antibiotics to treat infections, you are helping to stop the trigger of your kidney problems. JMHO (just my humble opinion).

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• By lindart
• Posted April 6, 2008 at 7:53 pm

I'm new at this -- what is MCD?

I would certainly investigate. Perhaps she has an underlying infection that needs treatment which is causing NS. Seek out blood work to anything you can think off. What illnesses/infections has she had in the past that maybe wasn't completely halted and the infection is still in her body. I don't really know . . . just thinking out loud.

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• By lalo
• Posted April 6, 2008 at 8:07 pm

Hey everyone, thanks for the inspiration. My regular pediatrician prescribed my daughter some ammoxicillan, she was like "It's been prescribed for less." So that made us feel better...I am so hoping it works, because it would be fantastic to have this in our arsenal...but I am not getting my hopes up too high. This disease is too strange to follow anyones ideas but its own!

Anyhow, strangely, another medical professional who overheard me, actually called me on the phone and advised me to see the other nephrologist. She said that she wanted this person to see our information and thought they might be more open to it. How watergate is that! I felt very happy to be looked after though....and heard.

As some of you have said, sometimes our hunches are all we have to go on...even if they make no sense... or are completely false...!!!???? Who can really say?

Stay healthy everyone, and wishing you all protein free urine!

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• By LMom29
• Posted April 8, 2008 at 6:09 pm

I agree with the others that your written and dated documentation of remission after antibiotics should be shown to another neph for a second opinion. Maybe there is something simmering that never clears up. I do remember a neph from Galveston who warned me ( when daughter had sinus infection and was on antiobiotics) and of course a relapse, to be sure to give the antibiotics for a minimum of 21 days to completely clear it up--that sinus infections were hard to clear up. At that time she was having about one relapse a month. I'll pray that God will give your doctors and you wisdom to give the best treatment.

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• By tr9736
• Posted July 1, 2008 at 5:28 pm

the way someone explain it to me was, pred can mask symptoms of a viral/bacterial attack till it is too late and you have a full blown relapse on your hands. This person said that once you start seeing any signs of a cold, regardless of how small, AND the stick readings start to climb, start an antibiotic course right away whether or not it is bacterial -- it doesnt matter. She said in the 15+ years she's been battling NS with her son, it was worked in preventing a relapse (and subsquent high dose of pred) about 98% of the time! Her neph did not agree/nor believed it either so she has been going to her pediatrician for the scrips since, like someone said, it has been prescribed for less... I will definitely do this in the future -- I have not tried it yet since I found out after his last full blown relapse from a cold that put him in the hospital, but rest assured, I'll try it next time for sure!

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