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Wednesday, August 19, 2009

A Tough Lesson to Learn

A friend of mine told me a story about what happened to her little girl after she had a similar poop situation as Lizzie had the other day and I wanted to share it with all you other mommies in case you have a similar issue.

"When L was 15 months old, she had a big-time poop breach and, like you, we hosed her off in the tub. A day or so later she had a fever. We watched her but she really didn't get lethargic or anything. Then we had to go to the ER at 4 am because she had a temp over 104 and was very "cuddly" (not typical for her at that time). Mind you, she was literally running around the ER smiling and saying hi to everyone (with 104 fever). The doc gave her ibuprofen and said that we could test her blood and urine but it's probably just a virus and that there would be a needle for the blood and a catheter for the urine and we might want to wait. We went home (her temp was still 103).

The fever seemed to be cyclic and continued to spike about every 4 hours (she would get cuddly and hot but not sweating, then later she would start sweating and the fever would break). She had a few more cycles so we called the doctor hotline and were told that they absolutely should have drawn blood and urine at the ER and the next time she spikes a fever to go to the ER, otherwise go to the pediatrician the next morning. She had an uneventful night (or it didn't wake her up so we didn't know about it).

We went to the pediatrician the next morning and according to the ear temp thingy (not accurate) her temp was normal but her throat was red from crying so much in the waiting room. The doctor pretty much ignored what I told her about the symptoms and said that she probably had a virus and sent us on our way.

The next day we went to the ER with a temp over 106. They finally took blood and urine (it took 4 adults to hold her down for the catheter) and the needle broke off so they didn't get enough blood to determine what exactly it was-but her white count demonstrated that she had a raging UTI. They gave us some antibiotics and sent us on our way.

She didn't really get any better and the next day we got a call from the ER that the culture from the urine came back and the drugs they gave us wouldn't work so we had to go back and get a different type.

So, now you'd think it's over . . . not quite. Because she had been misdiagnosed and had such a raging UTI, another doctor had a knee-jerk reaction and ordered a VCUG (to test for kidney reflux). The VCUG required that they catheterized her, again, and filled up the bladder and watched where it went using something in radiology. I don't know all of the details because only one parent could go with her and since I was of child-bearing age it was strongly recommended that the dad be in radiology (while I waited outside listening to my daughter screaming for 30+ minutes). So, they determined that she had level 2 (out of 5) kidney reflux on one side. This is extremely common, but not often diagnosed because they usually only do this procedure for chronic UTIs. She has had exactly one UTI in her life.

So now she had to be on prophylactic antibiotics (yes, every single day) which she hated. And, as if that wasn't enough, she had to have her urine tested every time she had a temp over 100.4. After the first time she had to be catheterized just for a "teething" fever we asked if we could please try to get the urine ourselves. From then on we were able to do the urine collection at home and just bring the sample to the lab within 30 minutes (we kept a stash of sterile sample cups at home).

After a year of giving her antibiotics and taking urine to the lab whenever she had a fever, we decided to take her off of the meds (without the doctor's permission, but we moved and we kind of skirted the issue with the new doctor). She has never had another UTI, and we are not going to make her go through a VCUG again to make sure the reflux has gone away (80% of kids grow out of kidney reflux within 6 months). I believe that she was traumatized by the VCUG and other catheterizations. She still has elimination issues, fairly bad phobias surrounding doctors and particularly exams, and I'm afraid that she might have intimacy issues when she is an adult. I dread the day when I have to take her for her first GYN exam."

1 comment:

Heather said...

Hi there,
I just stumbled upon your blog and happen to read this post regarding your daughters reflux. I am an adult now but had the same issues as a child. I was diagnosed at 2 months old. I had similar testing and three surgeries to correct the issue (I also had duplicated ureters). I just wanted to assure you that I think your daughter will be fine in regards to the trauma from the VCUG. I hated them but really have no problems with Gyn's or other Dr. visits! Also in regards to taking her off medication...if she does get another UTI because she has reflux it can lead to Kidney infections which can cause permanent damage to the kidney. That is the real reason (at least for me) that I was on the medication. But yes, the good news is you do tend to grow out of it. However, you will probably be able to tell when/if she is sexually active because more than likely the problem (UTI's) will appear. Also, I think sibs (and her children) have a 50% or 60% percent chance of having the same issue so you may want to keep an eye out. My ped advised me to have my children checked. Hopefully, you don't mind my two cents worth regarding the issue. Best of luck to you and your beautiful family!!