Reflux 'R' Us

Friday, May 28, 2010

We found out yesterday that Emma does in fact have VesicoUreteral Reflux (VUR). It was a long day, and it's a long story, but I will try to summarize it as much as I can here.

We headed off to Johns Hopkins Hospital bright and early yesterday morning for Emma's renal sonogram and VCUG procedures. I really can't say enough about how amazing all the doctors and nurses were and how they did whatever they could to make both Emma and Mommy and Daddy as comfortable as possible. The renal sonogram went really well. They dimmed the lights and allowed me to sit on the bed so that Emma could just recline (and climb all over) Mommy during the test to make her more comfortable. They even had Finding Nemo playing for her to watch, although she was more interested in all the buttons on the sonogram machine haha.

The sonogram showed that Emma did have two kidneys, they were the right size and shape and in the right position (apparently they move up higher in the abdomen after birth). Then it was off to the VCUG procedure and this one was a little tougher, partly because of our little stinker of a daughter. We had to strip her down and lay her on a table while they inserted a catheter to check her urine and to insert a clear dye that would help identify any reflux. The goal is to fill up the bladder so that the pressure inside the bladder is increased and take pictures as it fills to see if any urine travels back up the ureters towards the kidneys. Well, our little stink-pot kept urinating after they inserted the catheter so they kept having to start over! She did it three times! I guess because it was really the only thing should could do since we had to hold her down pretty still so the doctor could watch and manipulate the machine, so she was showing those doctors and nurses how happy she was about having this done! Finally they got the bladder full enough (we will get back to this in a minute) and we were off to go meet with the pediatric urologist. Overall, Emma did really well and was able to calm down immediately after the procedure. Although she did not want any of the nurses to walk within 5 feet of her after that.

While talking to Dr. "M" (the pediatric urologist) we were shown the pictures and got a great explanation of what VUR really was, how it is caused and our path forward. Dr M guesstimated Emma has having Grade 1 VUR which is the lowest kind, but he couldn't say for sure that it wasn't higher because of the little stinker urinating during the test so much. They weren't able to fill her bladder to the extent that would show the maximum reflux, so she was a minimum of a Grade 1 (on a scale of 1 - 5). For Grade 1 VUR, 90% of the children grow out of it within 5 years, that's the good news. The not-so-good news is that Dr. M thought that because she had a major UTI and because it took us three full days on antibiotics to crack that fever, that it actually caused a kidney infection as well. There are some other reasons as well that would take 3 pages to describe (based on antibiotics that were tested against the infection and the kind that she was given, etc) but he seemed pretty confident that she had a kidney infection as well.

So, Emma will be on antibiotics (more on that in a minute too) for a minimum of 2 years and will be scheduled for a DMSA scan probably next week. A DMSA renal scan is a nuclear medicine test that shows pictures of the kidneys and how they are working. Its a pretty non-invasive procedure but does involve an IV and sedation. It's similar to the VCUG where they will inject a radio-active material into her (her blood this time though) and it will attach itself to her urine and travel to her kidneys. Then it takes about an hour to take a lot of pictures of her kidneys to look for potential scarring. She will be sedated because she will need to lay perfectly still for an hour, and that just isn't going to happen if she is awake. The whole thing takes about 5 - 6 hours.

Assuming that Emma will not have any more UTIs, in 2 years, we will go through another round of VCUG testing and DMSA tests to see if she has grown out of the VUR yet and to see if there has been any additional damage to her kidneys (so this first DMSA will be our baseline to start from). If she has any other UTIs, I think things may change, but we are crossing that bridge if we get to it. This will have an affect on a couple of things as well, like how Emma is potty trained. We will have some more-strict instructions from Dr. M on how we need to do this when we get to that point, and we have to be more aware of things like constipation, which now could be bad for Emma (because it can cause UTIs which could then cause more kidney damage, etc). Any future children that Wes and I have will have a 40% chance of also having VUR, and Emma's children will have a 70% chance of having VUR as well. We talked with Dr. M for over an hour so I am sure there is a lot that I am missing, but that's really the gist of it.

Now onto the study. Johns Hopkins is involved, along with the US Government, in a study that is trying to find the best method of treating VUR. Children with VUR usually take a low dose of antibiotic once a day to prevent UTIs (which is called prophylactic antibiotic treatment). This doesn't stop the backflow of urine, but kills germs in the infected urine that does backflow to the kidney. New research suggests that if a child with VUR has close follow up with the doctor for every illness with a fever, a UTI can be treated early and kidney scarring can be prevented without the use of daily prophylactic antibiotics, and that's what this study is looking at, whether or not children with VUR need to take antibiotics or not. Dr M is leading this study and is one of the Top 5 pediatric urologist in the country so we jumped on the chance to have Emma participate in this study for a couple of reasons. We now have 24 hours, 7 days a week access to a pediatric urologist/nurse, we have additional screening and follow up visits every 6 months to more closely monitor Emma and her VUR and we have someone to call at 3:00AM when she wakes up with a fever and we don't know what to do and if it is VUR related or just something random that we picked up. If we ever go to the pediatrician or hospital for fevers, we now have someone calling ahead, explaining VUR and discussing the path forward with the doctors before we even arrive. We also have the hope that we can help find the best path forward for children with VUR and that means a lot to us given the percentages of our future children and grandchildren having VUR. The study will also cover the costs of VCUGs and DMSA scans, and Emma will get a check for $25 every 6 months haha. That's going right in the piggy bank and she is going to be able to spend that money on whatever her little heart desires!!

I think that is probably enough rambling on for now! Mommy had her freak out day yesterday, so my head is now back on my shoulders straight and we are moving forward with whatever we have to do to help keep our peanut healthy. More to come later when we find out the date and results of the DMSA scan, so stay tuned!!

1 comment :

  1. Aww that sounds like a long and tough day for both baby and parents... I'm keeping you all in my thoughts and prayers.


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