Advice needed - Page 2

[aihley]

Just a little more insight from someone who has had SEVERAL kidney stones - sometimes there's just irritation down there. I had it really bad through the last part of my pregnancy. It felt like there was a tiny stone stuck right at the very end of my urethra. Nothing ever passed and it was slightly better after DS was born. It's come back every now and again & none of my doctors know what it is (or really care enough to investigate past negative tests). Sometimes very small stones can pass without causing the intense pain but instead causing mild to moderate irritation. I would be suspicious of this as a possible cause for the irritation your little guy is experiencing. I hope things go better with this doctor & your little one gets some relief soon!

[Minniepott]

I think you're right. He has complained of crumbs being stuck in there during times when he has blood in his urine. And the sting he feels is described as "a bee sting way inside" and he points to his pee hole.

It's just when doctors are so adamant about something else being wrong, you start to sway and think they are right, and your instinct leaves you for a moment. I'm just glad I came here. It helped me get my mommy mojo back.

[brant31]

Just some random thoughts, Minniepott.

I remember when I had to be catheterized several years ago for some urethral surgery, and it took ages to heal. I was peeing little blood clots for what seemed like 2 weeks (thankfully the docs warned me about this beforehand) and it stung. Could it be that with repeated catheterizations your little one has not fully healed in his urethra - even as far back as the pendulous urethra near the perineum, where I was having my problems - and has a recurrent infection or inflammation there? In my case I had a small diverticulum, or pouch, in the pendulous urethra that would occasionally become septic and cause me great misery. It was discovered when they X-rayed the entire length of my urethra. They opened up the diverticulum when I was 30 and I've had no more issues.

BTW, I went to college in your town and my brother still lives there. As I understand it, the medical options have been growing rapidly with the population, but perhaps knowledge in this particular area has yet to catch up.

And as a point of interest, perhaps the finest Family Law professor in the country on the evolving fields of parental responsibilities, children's rights and the morality of infant/childhood elective circumcision is right there at the Marshall-Wythe School of Law, Prof. James Dwyer. Jim is an acquaintance of mine and a brilliant, thoughtful scholar (and parent).

Finally, Dr. Bob Van Howe in Michigan (MD/MPH) has published regarding phimosis in circumcised boys, and points out that true pathological phimosis is actually more common after circumcision than in properly cared-for intact boys. Very surprising, but true.

[Minniepott]

Brant
Would a problem like that show up on a urinalysis? He's never had a UTI and gets tested regularly.
Getting them to check out his urethra with imaging would be like pulling teeth. I've tried to get them to do it when they check him out with US and other imaging techniques and they say it's unnecessary. When they x-ray him his penis is in the picture. Would it show up at all?

What's weird is ALL the specialists say that the crystals and/or small stones he forms shouldn't cause any discomfort, difficultly urinating, or pain. (even though this is how the kidney stones were diagnosed in the first place. Because of previous renal pain, and pain and difficulty with urination)

So when he has urinary symptoms they always look for other causes of it. I say "How the heck do they know how painful it is?!" It's not like kidney stone disease is uber common in toddlers and young children, and they have a crap load of cases to go by. I also learned that pain isn't taken too seriously when it comes to a child, unless they are crunched over doubled up in pain screaming their guts out. My Eric doesn't do this anymore unless it's so bad that he can't urinate but a few concentrated drops at a time. Even then he doesn't scream in pain and breaths through it and uses what he calls his "tricks". He doesn't cry when he skins his knee, or gets cut or scraped or bruised, etc. He stopped the classic way of expressing his pain when he was only months old. He's had chronic pain since his birth and he's one tough nut. Doctors don't get this at all (his GI does, but none of the others).
They have put him through a battery of tests trying to find out the reason behind his voiding symptoms, some invasive as heck. When all the while it's just been his stones and/or crystals forming and passing. Maybe an adult system wouldn't have a hard time with these little buggers, but a small unwell child indeed could.

I say it for SURE causes him discomfort and pain, and he usually has blood in his urine during these painful times to prove it.

now that I got my head on straight again,
I know it's not foreskin causing his discomfort/pain (even though it can get a little buggy, just by going through it's natural separation process)
For one, his foreskin is not long and narrow, it's just long enough to cover his glans and protect the tip. A perfect fit, just like Daddy LOL.
His opening is much wider than his urethral opening and barely, if at all comes in contact with his urine. It doesn't balloon or get trapped. The only time that happened was after the first time they hurt him as an infant.
So even though he's not fully retractable
and has "Phimosis" (eye roll) his phimosis wouldn't cause the symptoms he describes at all.

You all,
talking like this is helping so much. (((hug)))

[eepster]

Originally Posted by Minniepott

What's weird is ALL the specialists say that the crystals and/or small stones he forms shouldn't cause any discomfort, difficultly urinating, or pain. (even though this is how the kidney stones were diagnosed in the first place. Because of previous renal pain, and pain and difficulty with urination)

Crystals in urine may be rare in young humans, but it is a pretty common problem in cats. Our male cat went through this, and he was in quite a bit of pain. All the vets he saw mentioned that it is a very painful condition.

Adults (back to humans now,) who have experienced kidney stones, say they are painful. Especially the men.

[Minniepott]

Just wanted to give an update

The urologist that injured him had a rep call me to make sure I still wanted her as Eric specialist, and if not she wanted to recommend someone because she was worried about my son's follow up care.  We haven't been back, I didn't take her recommendation, and now a nephrologist is handling my son's kidney stone problems.

The clinic the NP works for wasn't so professional.  5 months after receiving my fax we got certified letters informing us we were getting dropped as patients.  A fax that contained all my contact information, and stated "if you have any problems, questions or concerns or would like to discuss this further PLEASE feel free to contact me anytime".  We continued to use this practice for months, and never was I told there was a problem with anything.  The last 2 times we went in I felt as though we were getting treated differently than usual, but I quickly put it out of my mind because if there were a problem I would most certainly know by now.  They sent form letters that are used to drop drug abusers, and not even slightly pertaining to our situation at all.  After several attempts to contact them for a discussion and legitimate reason for the drop, I gave up.  They were all told not to talk to me, to just say "The patient doctor relationship has been compromised.  I am not at liberty to discuss this with you". 

And you have to remember nothing at all transpired between myself and his doctor.  His doctor hadn't ever touched his penis.

Dropped from an entire practice all because they were too uncomfortable with my simple request not to examine my son's penis.  UNREAL!!!  Now we have to travel 45 minutes away for any acute care or well visits.

And here is my latest thread explaining how my son is currently doing

http://www.mothering.com/community/forum/thread/1317860/i-think-my-son-may-be-having-problems-need-your-help

Thank you all so much for all of your help and incredible smarts.  I seriously cannot thank you all enough for all the education and mojo I needed to get through all of this