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Old 05-20-2010, 08:09 AM   #1
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Unhappy More pee pee problems.... *Kinda* Update in post 27

Here's the background:
For close to a year now DS has been having urinary issues. He has blood in his urine. Cries when he pees. Gets blisters and peeling on the head of his penis. The meatus crusts over and blisters. He also has a discharge coming from his penis. We have now been to 6 different drs for all of this, 2 peds, a urologist, a derm, an allergist, and now finally a naturopath. One ped. said it was just an irritation and to put some steroid cream on it. That didn't fly, so we went to the 2nd ped. He said the blistering reminded him of impetigo and put DS on antibiotics. The urologist did a cystoscopy, a u/s of his kidneys and bladder, and some blood work, but came up with nothing and sent us to the derm. She said mastocytosis but did no testing, just looked at it and said that. The allergist has found no allergies to anything. (after 30+ pricks!) The naturopath has overhauled his diet (no white sugar, limited carbs, no dairy, limited soy), started him on supplements (fish oil, calcium lactate, and immune support, and an herbal called viola clear fire and another called albaplex), and is doing cranio/sacral massage, he's also a chiro so he's adjusting DS too.

OK. So after all of this, there is still no improvements!! Just this morning I woke up to him screaming in pain. He had discharge in his dipe and has bloody spots in his undies. And everytime he's gone potty today he's cried. Other than this issue and his eczema, DS is a generally healthy boy. I just don't know what to do!! It breaks my heart to watch him go through this every day. The urologist wants to make the opening to his urethra a little bigger, thinking that it's too small and that's why it crusts, and she's also mentioned a biopsy. It's just so hard for me to hand over my 2yo lil guy and say "sure, cut his penis!" Does anyone have any suggestions at all?? I'm so sad for my guy and just want him to be able to pee....

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Last edited by j+csmama; 08-03-2010 at 08:31 PM.
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Old 05-20-2010, 08:35 AM   #2
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Re: More pee pee problems....

I have no suggestions but as a mom of a little boy who has unexplainable health issues too, I can relate to your frustration and want to offer you BIG Sorry your little guy has to go through all of that =(
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Old 05-20-2010, 09:35 AM   #3
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Re: More pee pee problems....

Oh that is terrible! I don't have any advice except for big hugs to you and your DS. It must be SO frustrating to have to deal with this and it's awful that they haven't figured it out yet! I hope something changes soon mama!
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Old 05-20-2010, 09:39 AM   #4
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Re: More pee pee problems....

OKay I just mentioned this to DH and he said "DIET!" I know he's on a limited diet, but have you ever done an elimination diet? Perhaps there is something that wasn't caught by the allergist that is causing the trouble? How long has he been on the special diet? Sometimes that takes a little time to take effect.
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Old 05-20-2010, 09:51 AM   #5
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Re: More pee pee problems....

Similar situation here. We've been dealing w/ blood in DD's urine for months now. WE've currently had a kidney u/s, 5 viles of blood taken, more cultures than I can count, an echo on her heart, and WAY TOO MANY ANITBIOTICS. All test, besides 2 cultures, were normal. She's see's the pedi Urologist June 9th and I am so ready to go. She's having a VCUG, where they will cath her and watch via pictures how her urine travels through her system. I am not looking forward to the test and neither is she but we are hoping to finally get some answers. Just 2 nights ago she lay screaming holding herself and said "mommy I need go doctor, my butt hurts" I just want to scream and cry with her
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Old 05-20-2010, 09:53 AM   #6
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Re: More pee pee problems....

He's been on his diet for a little over a month now. Basically we've just gone to a whole foods diet for the whole fam. Very little by way of processed anything. With the allergist and the naturo, they both also recommended the elimination diet and we did that for about 3 months, a very painful process for the 2 of us! lol I keep picking up the phone to call the urol. and schedule the biopsy, but then I just can't do it! I really want to exhaust all my other options before cutting into his penis, KWIM? But a part of me, that keeps getting bigger by the day, feels like this is our only option at this point.....
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Old 05-21-2010, 07:08 AM   #7
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Re: More pee pee problems....

So he just started throwing up. I don't know for sure if that's got anything to do with his problem or not.... But I kinda think that it might be the new supplement he just started. I might eliminate it today and see how it goes.
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Old 05-21-2010, 10:54 AM   #8
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Re: More pee pee problems....

no advice but
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Old 05-21-2010, 11:58 AM   #9
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Re: More pee pee problems....

If the meatus is too small, it can definitely cause problems. To me, the problem doesn't scream "diet" because he's only having problems in that area. You didn't mention if he was circ'ed or not. If he isn't, your post concerns me because he shouldn't be retracted and premature retraction could cause scabbing and scarring. If he is, well meatal stenosis is a relatively common complication of circ, and if there's a chance that's causing the problem, I'd want to get it fixed sooner rather than later.
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Old 05-21-2010, 12:03 PM   #10
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Re: More pee pee problems....

Poor little guy!!! I can't imagine my DS going through this kind of pain and no one being able to help. I can only imagine how you are suffering, too I don't have any suggestions, just wanted to give you both a HUGE HUG!!!! Please let us know how he is doing and what you find out.
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