Nephrology

[Guest]

I need help!!!! I need advice and am looking into all avenues for education.

For the last five years, my daughter has had many recurrent UTIs.

During the time they started, I noticed a change in my daughter's personality (irritated over the smallest things, easy to cry, frustrated more, fatigue-all of these were so unlike her). I also noticed that her face would swell (eyes would become sunken and her face would take on a puffy, chubby look to it) and she started to experience extreme thirst. I suspected maybe the beginning of diabtese, but her doctor did a finger prick and said it was fine. I do realize since that time and becomming more medically knowledgeable that this might not have been the most conclusive way to check this. I myself took readings (when she would become irritable, tired, etc.....) for a few months also by pricking her finger and her readings were often low, even following an hour after a meal.

In 1999, she underwent a cystoscopy with cystogram and urethral dilation and a calibration of the urethra. Her urethra calibrated only about 8-10 and was subsequently dilated to 14. No reflux was demonstrated. The bowel was emptied and a cystoscopy was performed which showed one orifice which seems to be fairly normal in location although the right is not quite lateral. No tumors were seen. Her urethra was then dilated to 16. She continued to get UTI's

In 2000 at the age of 6, she underwent a VCUG that showed her with a grade 2 vesicoureteral reflux on the right. It was described as extending to the level of the right intrarenal collecting system. This test also showed her with a small amount of postvoid residual within the bladder lumen upon completion of voiding and a slight bulbous appearance of the urethra.

Her kidneys were also imaged at this time. The right measuring approximately 8.6 x 3.0 cm when measured from a posterior approach , which made this kidney at approximately the 75th % for her age. Her left measured 9.4 x 3.6 cm from a posterior approach, which made this kidney at approximately the 90th % for her age. Both kidneys were smooth in outline with no evidence of hydronephrosis.

Following this testing she was put on antibiotics for a long period of time. She had a break from the UTI's and then started getting them again.

In 2001, she underwent another voiding cystourethrogram that showed the bladder as well distended and with a smooth contour. The urethra appeared normal. No vesicoureteral reflux was seen during exam and her bladder emptied completely. She also had another ultrasound of the kidneys. Her right measured 8.2 x 3.4 x 4.4 cm and her left measured 8.8 x 3.9 x 3.6 cm. There was moderate parenchymal thinning at the upper pole of the left kidney. No hydronephrosis was seen. No renal mass or calculi were detected.

The end of 2001, beginning of 2002, she began to experience chronic constipation. It would come on suddenly with no signs. When she would complain to me about it, her constipation was so extreme that her stomach would become bloated and she would be completely backed up. Following seeing her ped. gastronentoligist (who performed her second operation to remove juvenile polyps-even with following the 3 day cleansing-clear liquids, two different laxatives each day, and an enema the night before surgeries she was still not cleaned out completely), she was put on a high fiber diet. Her diet should have had an adequate amount of fiber in it, but I still increased the amount and kept track of what she was eating and when, etc. We had no success. She continued to become constipated on the average of once to twice a month. She was put on lactolose as nothing over the counter would work on her.

My daughter has continued to get UTIs and April of 2003, she started complaining of her heart hurting. She would describe it as feeling like it was beating really really strong and wanted to beat out of her chest. She said it did not feel like it was beating faster. I began to pay attention to when she would get these episodes and noticed them increasing in frequency and duration. I also noticed that they could come at any time, usually during times of quietness (watching TV, reading, riding in the car, and that she did not have any reasons to be anxious during this time-which I considered even though this did not match my daughters personality). She was put on a heart monitor at the end of June for 30 days.

On July 1st, after having the heart monitor on for almost a week and downloading readings every day (many times several times a day), she underwent another urethral dilatation. She had been complaining of pain in her left side for months and had another UTI during this time. Her urine showed blood in it before the operation. Her urologist explained the pain as being in the left upper quadrant on her left side and suspected a possible reflux passage. A cystogram was done on her. The bladder appeared normal in contour and no filling defects were identified. No evidence of reflux into her ureters. Postdrain film showed no significant residual. Her urethra would not calibrate at 12, so he dilated her urethra at 10, then 12, 14, 16, and then 18. Cystoscopy was done and revealed the orifice to be normal.

A couple of days after the surgery, she experienced an episode of diarhea so bad that she had an accident while eating at a restaurant with me and her siblings. She could not make it to the bathroom in time. My daughter has never had a problem with loose stools. This was completely new to us. This same day she was put on antibiotics for the UTI that she had before the surgery.

Following this surgery, my daughter began to urinate more frequently and complained of no heart pain for a whole week, then we had one episode. Another week went by and she experienced another episode...almost a third week passed before another episode of heart pain...then I noticed that she began to urinate less frequently. She was over her antibiotics and I took her in to have her urine tested for a possible UTI. Her urine was fine. A few more days passed and she began to complain again of heart pain. I knew something wasn't right. I took her into her urologist again and she had another UTI.

Her doctor was puzzled. Obviously the surgery had not worked. Her heart pain episodes are increasing.

My daughter's frequency of urination is not what it should be and hasn't been for years. I have tried behavior modification with her at the suggestion of one of the doctors she saw. Having her sit on the toilet every two or three hours. I also tried for many months having her sit on the toilet every morning for quite awhile with a book she enjoyed, trying to regulate her stools. None of this has helped. My daughter mostly drinks water. I have homeschooled her since the middle of kindergarten when her problems began to negatively interfere with her school work.

I truly suspect that her input level of liquids (that being mostly water) does not correlate with her level of output. Her urine always has been very concentrated and extremely strong smelling. I know myself (from observation of my body and what I know medically) that by drinking the appropriate amount of water or more will help to cleanse your body and it causes my urine to be clear. Hers never is and she drinks over 8, 8 ounce glasses of water a day. I never know when she has a UTI (when she was little she would have accidents-this is when I knew), now the only way I can suspect is if I see her urine or smell it. She usually doesn't run a fever and does not complain of it hurting when she urinates. The smell is very bad and you can not get the smell out her clothes even with repeated washings. I would say that her average times of urinating in a 24 hr. period is 3, but we have even had episodes of only once. She does try, but she just can't go.

Recently in the last week, she has been having pain in her stomach. She has not ran a fever, neither is the pain associated with having an upset stomach, and she says that it is not the same pain she feels when she is constipated (from the gas). I don't know if this is associated with her other problems, but thought I would mention it. It is pretty much continuous, but does go up and down in intensity. She describes it as being on the pain scale as a 5 or a 6 (with one being slightly uncomfortable and 10 being the worst pain you have ever felt) when it gets really bad. When she broke her arm, she said her pain scale was a 5 or 6 then. She has a high pain tolerance. They were able to set her arm in the Emergency room without any pain medication or by putting her under anestia and she did not cry.

The only other symptom I can think to mention is that following a car accident a year ago, she has started to experience migraines and headaches very often. She experiences migraines at least twice a month, with headaches being several times a week. I don't think this is related to what is going on in her body, but thought I should mention it as her doctors can't figure it out and so maybe it is.

My daughter has had no bubble baths since the onset of these UTI's. She definitely wipes the appropriate way (front to back-even though it hasn't been proven to cause UTI's). She changes her underwear at least once a day, many times twice-once in the morning when she gets dressed and then at night on the nights she takes a bath. She was breastfed for the first year of her life (she was ready to give it up and only wanted her cup) and had no illnesses (ear infections, strept throat, etc.) until she got the chicken pox about three months before her second birthday. On her second birthday, she was admitted into the hospital for pneumonia following a wrong diagnosis of raging ear infections.

She did not experience any sicknesses after the pneumonia until she had the problems with the juvenile polyps (her brother has them also and they have had two surgeries each over the last five or so years to remove juvenile polyps). About this time she started the UTI's and hasn't been the same child since.

I am just a very concerned mother. I love my children and do not want to see them unwell. I have been searching for almost five years now for an answer to her UTI's. We have tried so many different things and she has been put through so much, but only concentrating on her bladder and voiding. I do not want to keep pumping antibiotics into her that put a "bandaide" over the problem for a few weeks and then the problem surfaces again. Something is wrong with her and I really feel that it is something systemic. I also feel that her heart problems and constipation issues are somehow related to the UTI's, along with her facial swelling and her thirst.

She is 9 yrs. 5 months old and weighs 70lbs. When has worn the same size clothes for the last two years (although there was a period of time that she was wearing a bigger size, but she somehow lost weight-not intentionally).

We so desperately need guidance. My heart tells me that there is something going on in her body, but the doctors here have not figured it out. I even had her to an environmental internal medicine doctor at one point, having him check her for other less acknowledged reasons for illnesses, such as an overgrowth of candidas. I am at a loss here. This has gone on for too long and there seems to be so many discrepencies in her bloodwork and in all the tests that she has had done. I am still waiting to hear back on her heart monitor readings, we have an appt. next week with her cardiologist-he believes that there is no way her heart pain could be tied into what is going on in her body. We are tired of having to go from one doctor to another-being sent from one place to another.

I would really appreciate any help or guidance you can suggest. I am trying any and all avenues as my child was never a sickly child, until the last few years and we seem to be gaining more and more unexplained symptoms.

I really am not medically familiar with the renal system, but am curious as to why her kidneys show such a discrepancy. Her kidneys measured smaller on the ultrasound that was done a year and a half after the first one. She hasn't had any other ultrasounds of her kidneys since the one in 2001. I have just started getting her medical reports and noticed this discrepancy when I was writing this e-mail. They were done at different facilities in our state and by different lab technicians so maybe that is the reason for the discrepancy. I would assume that they used the same procedures and ways of measuring and am not even sure if this is a big deal, but thought I would mention my curiosity as my common sense tells me that they should be bigger on the second test as it was a year and a half later. A part of me has considered her kidneys as being the root of her problem for a long time because of the reflux she once had and the issue of the possibility of damage being done by all of these UTI's.

I am not looking for a diagnosis, just someplace to start looking that hasn't been looked at before and something is pointing me to the kidneys that have never been looked at-just the ultrasounds which were a natural part of the tests she had to check bladder and voiding.

I am at a loss and this has gone on for so long...

Thank you from the bottom of my heart for taking the time to read this.

A very concerned mother