Posted by: BraedensMom

UTI - 08/11/07 10:48 PM

My son who has nethertons was just diagnosed with a UTI. They now want to run a bunch of test because "boys dont usually get UTI" they found Ecoli in his urine which I thought was rather odd. I was wondering if you might think that its related to some of his skin problems. We are always fighting with his groin it weeps and is always red. I just dont want to put him through alot of test which I was told were not pleasant for a 1x UTI what do you all think. Thanks Tammy
Posted by: texlex99_dup1

Re: UTI - 08/12/07 03:15 AM

Hi Tammy, my name is Becky and I have nethertons also, as does my brother. I'm don't have any answers for you myself, but let me ask my mom if my brother had any trouble with uti's when he was little. I think that I remember that he had one when he was 12 yrs old though. Let me check with her and I will get back to you, especially about the weeping and rawness, and what she found that worked for my brother, I do know that we had to wear cloth diapers and no plastic pants. By the way, I'm 36 yrs old and my brother is 37, and again we both have nethertons. Please let me know if I can help with any other questions or concerns.

Feel free to email me if you would like also.

I'll get back to you soon!

Posted by: texlex99_dup1

Re: UTI - 08/12/07 02:42 PM

Hi Tammy, I talked to my mom this morning, and she said that she wouldn't put him through all those tests for 1 uti. She would ask the doctors what could cause the ecoli in his urine though. But she would wait on doing all those tests, because she says that he has already been through enough. As far as the groin area weeping and red. She suggests letting him soak in the tub a lot, and then put aquaphor on him. And she says that we could only wear cloth diapers and never plastic pants. She thinks that that is the reason my brother potty trained so early, he was totally trained at 2yrs. She thinks because his groin area was always so sore. Please let me know if any of this helps. And please keep me posted. Let me know if I can help with anything else.

Posted by: BraedensMom

Re: UTI - 08/12/07 04:50 PM

Thanks for your help Becky. Braeden is 8 years old so we dont really have the diaper thing going on. I have tried everything for him from sm amount of bleach in the water to well you name it.I sometimes wonder if he just has some type of infection going on there. I dont know how many times or how many doctors I have shown. He says it dont hurt but I am not sure about that. So Where this E-coli came from is very frustrating for us. He has two baths a day. We may not have ever discovered it had he not been sick for awhile and that is why they did a urine specimen. Thanks again for all your help. Tammy
Posted by: texlex99_dup1

Re: UTI - 08/12/07 06:31 PM

Hi Tammy, I don't know why I thought he was a baby. Sorry about that. Does he wear all cotton underwear? The other thing you could try is putting aquaphor mixed with hydrocortisone. Are you using aquaphor? My derm prescribes 2% hydrocortisone mixed in aquaphor, for the really raw areas of my skin. What was he so sick with, if you don't mind me asking? Could antibiotics be causing the problem?

Posted by: BraedensMom

Re: UTI - 08/12/07 08:00 PM

Braeden was running a fever off and on for about a week with a really bad headache some nausea with it. WE thought he has some kind of virus because other children we know had some things similar. We decided with his headache so bad we would take him in. Thats when they ran all the blood work and urine tests. Blood work so far has all come back negative. They even tested for west nile. Its been very HOT here too 100's for the last 3 weeks with high humidity. We thought some of it could also be due to the extreme heat. I am thinking about seeing a urologist before we go and do all these tests if he says he needs them then we will do them. Havent spoke to our ped about what we are thinking of doing. I Dont want to wait too long but I dont want to not do them and something be wrong. The Ped said he may have a reflux where he is not emptying his bladder all the way or its going back up into the kidneys. Well thats our delima right now. We go have another urine test after we have been off the antibiotics for 48 hours. Thanks for all your help. Tammy
Posted by: BraedensMom

Re: UTI - 08/24/07 02:46 AM

Just wanted to say we had test done and everything came back ok. we will just need to watch him and make sure he dont get one again. I suggested a low dose antibiotic but we shall see. Thanks becky for your reply.
Posted by: Samiha

Re: UTI - 11/05/10 06:25 AM

i ve ichthyosis vulgaris & lives in tropical country,Bangladesh.I sweat profusely on face,comparatively less on back,neck & flexural areas,not at all on arms,legs,chest,belly,scalp.In summer,i easily get thirsty & drink plenty of water.But the problem is,if i take few sips of water i ve to go to pee within few minutes.The problem is more disgusting during winter when there is no sweat at all.I study MBBS in a medical school here.I remain very busy & always on running.Dermatologists here r nt ichthyosis specialist so no point of asking them why this is happening.Is this is happening as i sweat less thru my skin so my kidney needs to work more to discard extra water that my body is unable to hold??? This problem is embarrasing for me as my colleague doesn't aware of.For this prob,i used to take less water during 1st & 2nd yr of school & developed UTI for the 1st time.Does my prob related with Ichthyosis & less sweating????????? PLS HELP
Posted by: Glori

Re: UTI - 11/05/10 12:25 PM

I have EHK and I drink a LOT of water and have the same problem, I am constantly running for the bathroom. You have stumbled onto the answer I think...you are dry and thirsty so you drink but since you don't sweat, your bladder just gets full. My doctor told me that it's common for people with Ichthyosis to have what's known as "overflow incontinence". It does NOT necessarily mean that you can't hold your bladder btw, it means that you don't fully empty your bladder when you urinate so even though you went to the bathroom a few minutes ago, as soon as you drink you feel like you have to go again.
I was told that Kegel exercises can help strengthen the muscle and can help with the frequent trips to the bathroom.
If you find you are drinking because of dry mouth, it might be better to chew gum or use a mouthwash made to treat dry mouth.
Posted by: Samiha

Re: UTI - 11/05/10 12:52 PM

thanks a lot Glori for ur advice:)
Posted by: Laurensmom

Re: UTI - 11/05/10 07:28 PM

Slightly on topic...
have any of you been told that there are higher than normal levels of protein present in urine samples. Our daughter has protein in her urine, with no sympton of renal compromise, and of course they want to do a kidney biospy. I have asked our genetist to look into any connection with kidneys and ichthysosis. Really dont want to put her through that test if avoidable.
Posted by: KimNL

Re: UTI - 11/05/10 10:52 PM

I would like to add that sipping water throughout the day is preferable to drinking large amounts at one time. It hydrates the body better.
Posted by: Samiha

Re: UTI - 11/06/10 04:06 AM

Hi,Kim thanx 4 ur advice.Laurensmom,i m a medical student.Just gave my final exam and waiting for internship.As far i know,kidney biopsy is done when kindey function is compromised.Pls give a minute to read indications 4rm this link http://en.wikipedia.org/wiki/Renal_biopsy

I live in Bangladesh & study in Dhaka Medical College.Doctors do invasive procedure like kidney biopsy here when non-invasive Imaging techniques like Ultrasono,MRI,CT scan... reveal abnormality of kidney region like any mass/stone.Kidney biopsy is last option for investigation.

So my Q to Laurensmom is ve u done other imaging techniques & do they reveal normal?
Pls read the 7th para of st page of this link http://docs.google.com/viewer?a=v&q=cache:p1QmgAvf1TYJ:www.firstskinfoundation.org/userAssets/file/v2n2.pdf+protein+in+urine&hl=en&pid=bl&srcid=ADGEEShA7fg7a8QOTArxPEO8RQDRAPLglMGuRGy-8mF6wKy8pYS5pgZCy6254CRVPjQwpCXlJNnnokT44OcBOGP3LkzzAkUCFyIsC9aWUvvsNYItpZ5TYlHooO2WfpkqZ3iQkCQwbJDd&sig=AHIEtbQIVv7VGBkkEin6jn_pkBsSidgqHg

Level of tyrosine(amino acid 22 times normal in child's blood & urine..doctor got this in Lamellar & EHK childs..)
Posted by: Samiha

Re: UTI - 11/06/10 04:09 AM

I 'll write a wall post in FB abt this protenuria of ichthyosis.Lets c wht other moms reply if its physiological or pathological.I 'll reply u if i get ans from them.take care
Posted by: Hearsay

Re: UTI - 11/06/10 07:44 PM

Higher than normal protein in the urine is an indicator that something in the kidney might be failing.

The kidneys work by generating really high blood pressure inside the little tubules, which forces stuff (everything except the blood cells and proteins) out of the blood stream and into the kidney. Then it goes through a process of changing pressure, changing ion concentrations, osmosis and actively pumping stuff back into the bloodstream to filter out what is waste and what should return to the blood. Proteins and cells are too big to get through a properly runnning kidney, so when we find protein or blood in the urine, that is a clue that something is going wrong.

Whether it is related to the ichthyosis or not is hard to say, as it's not typical. Most people with ichthyosis are constantly slightly dehydrated, so urine tends to be more concentrated because less is going out from the kidneys. Dehydration usually lowers blood pressure a little. Neither of these tendencies would cause the kidney to fail to filter protein properly, but decreased urine volume means peeing less often and more time for bacteria to get into the urethra and cause an infection in between voiding.

UTIs make sense in ichthyosis. proteinuria shouldn't be any more common in ichthyosis than in the general population.
Posted by: Samiha

Re: UTI - 11/07/10 01:43 AM

thanx Hearsay:)
Posted by: MomofPrincesses

Re: UTI - 11/08/10 04:20 PM

Great info and advice!