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

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!

Becky

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.

Becky

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

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?

Becky

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

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.

hi,
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

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.

thanks a lot Glori for ur advice:)