Why National Kidney Month is so important to our family…
March is National Kidney Month, which makes it a very special month for our family. As most of you know, our daughter Lizzie has a condition known as kidney reflux. After a very difficult first year, Lizzie had her second major surgery on March 26, 2008… one year ago today. Thanks to a lot of prayer, great doctors and the research of places like the National Kidney Foundation, our daughter’s life has changed dramatically in the last year. This time last year we were desperate. Lizzie had been so sick her first year of life and due to a number of rare complications she was constantly cycling in and out of the hospital. She had already had one failed surgery, and our list of options was getting short. We were always worried about her health, and especially concerned that her kidneys were at risk of permanent damage from infection. After talking to her doctors, it was decided that she needed a more aggressive treatment, and she had her vesicostomy put in one year ago. It was the best medical decision that we could have made. Lizzie hasn’t had an overnight stay in the hospital since being released last March. Her kidneys are functioning well and she has remained infection free for an entire year! We have been so blessed. Lizzie still faces some obstacles in the future (but hey don’t we all?). She will eventually have surgery to take down the vesicostomy, and from there we don’t really know what to expect. What we do know, is that we are lucky to live in a time and place where medical advancements are around every corner, and because of this we have every reason to believe that Lizzie will live a perfectly healthy, happy life. We were extremely lucky to have found Lizzie’s condition early and aggressively treated it. She is growing well, developing well, and torturing big brother as well as the next kid, which is why it is so important to know the early signs of kidney disease, and what you can do to prevent it. I know most people don’t give much thought to their kidneys, but around here it’s a common subject. National Kidney Month is just one more chance for us to celebrate all that Lizzie has overcome. We spend a lot of time sharing Lizzie’s story with other parents and trying to raise awareness for kidney and urinary health. I figured most of you guys needed your awareness’ raised too 
So, I encourage you to take 5 minutes and learn how you can help keep your family healthy and safe from kidney disease. I also encourage parents of young children to know the signs of a urinary tract infection and what steps you should take if your child develops symptoms.
For more information on Kidney Health and National Kidney Month: http://www.kidney.org/kidneydisease/kidneymonth/
For more information on Urinary Tract Infections in children: http://kidney.niddk.nih.gov/kudiseases/pubs/utichildren/
Let’s talk (whine) about yeast…
Lizzie has really been struggling with yeast infections over the last 6 months or so, and too be honest I’m losing my mind. I just feel so bad for her and so frustrated that I can’t “fix” it. The last few infections started as thrush, and then a few days later she shows signs of a vaginal infection. What toddler (unless breast feeding) gets thrush at almost two?!?! I’m sad to admit it, but this is one of those things that I’m a little less natural minded about. Yeast is no fun, and I just can’t stand to see her uncomfortable ya know? The first sign warrants a call to peds and a Nystatin script. It’s just a battle I can’t win naturally thanks to those pesky antibiotics. But I’m working at changing that. Will I be successful? Who knows, but what can it hurt? I’ll still run for Nystatin, at that first little blister, but it certainly can’t hurt to try and stop it before it gets to that point.
Over the last few months, the yeasties seem to be getting more aggressive. The infections come closer and closer together, and I am starting to see the effects on her health. For one, she is always uncomfortable. How sad is it when “my booty hurts” is one of your kid’s first sentences? LOL Another concern is that her immune system seems to be affected by the constant infections and constant antibiotics. She just seems to always catch one bug after the other.
So what am I going to do other than whine? I’m embarking on a new adventure, and yeah, I said embarking, and I’m calling it an adventure. The goal…. basically overhaul her diet. It’s overwhelming… abnormally overwhelming to me for some unknown reason, but it’s almost Spring and Spring is the time of new beginnings. Not too mention that the garden is calling. It so much easier to eat healthy when you can pick it fresh. It’s the nature of the beast.
Lizzie has pretty much always been on a pretty low sugar diet but now it’s time to do the limbo… how low can we go? Her yeast is obviously worsened by it, but I don’t feel comfortable cutting fruit out of her diet. She’s becoming such a picky eater, and fruit is our fall back guy. When she won’t eat anything else, he saves the day. So the goal will be to eliminate all of the other sugars that we can (without losing our minds in the process) and slowly cut back on the fruit and see if there is any change. Wish me luck. I’m a little more concerned about mutiny from the men in the family than I am Lizzie! The boys like their sugar!
The next step is probiotic consistency. I give her probiotics randomly when I remember, and when we can afford it… which reminds me I should get on line and find a cheaper probiotic! But I digress… I need to be consistent and keep better journals of both the foods that she eats and the probiotics so that I can be more scientific about the results. I mean what is the point of doing it if you can’t figure out if it’s really helping? We were actually told by both peds and uro that probiotics were basically a waste of time and money because the antibiotics will kill off any good bacteria, making it a moot point (is that how you spell moot? Really?). After doing some research on my own, I still feel that if dosed at the right amount, at the right time, there is a chance that it may be beneficial not just with yeast, but also her immunity issues and constipation. So what can it hurt?
As for the yeast issue itself, I was a little surprised to find out that not as many kids deal with yeast issues as I would have thought while on prophylaxis for VUR. Maybe it’s just the people I know LOL, but in most of my “groups” it’s not been a big issue. I think I just assumed that it was pretty common.
My theory (which is worth a hill of beans) is that she has a major yeast overgrowth due to the constant high doses of antibiotics she received that first year (like 10 rounds). We have never been able to eliminate the yeast because it was followed by a constant low dose abx. I’m worried that unless we can find a more natural way to control the yeast, she may be battling it for years to come.
So that is the new project. We’ll see how it goes, and how she tolerates it all (along with the rest of us). We will be making some other adjustments in her diet as we learn more, but for now, high fiber – low sugar seems to be the goal. Sounds yummy huh? I know your just waiting for your dinner invitation….
Update and Ramblings about Lizzie
Lately I have done a poor job of keeping my blog current… sorry. In my defense, I am working on a new website (thanks to my dear hubby) complete with a new blog, articles and even a message board. Very exciting stuff. I am hoping to have it up and running within the next 2-3 weeks. I’ll keep you posted.
So, back to updating about Lizzie. Her Nephrology appointment went well. They took a very thorough look at her blood pressure, and found it to be within normal limits. It is much higher than average, but remains just within normal limits. So that was a big relief. I still have some concerns about her blood pressure long term, but I think we are in the clear for now. which is very good news. We will monitor her BP along with all her other stuff.
We did learn that one of her kidneys is working harder than the other 41%/59%, but together they equal 100% which is the goal. It is a little unusual (as most of Lizzie’s complications are) because there is no damage seen to either kidney, which makes you wonder why one kidney is not fully functioning. It doesn’t really matter since the other kidney is making up for it, it’s just another thing to add to the “weird” pile.
Overall a good visit. Not incredibly useful medically, but it gave me the reassurance that I have been needing. It’s just so hard to make decisions about your child’s health, and wade through all the medical stuff. I don’t know, maybe we didn’t even need the visit, but as her mother I am glad we went. I feel much better about her blood pressure with the lower scores and better testing. To me that means a lot… a whole lot.
Another plus was that the Nephrologist also strongly supports the idea of nutrition being an important part of her treatment, which I was glad to finally hear a Doctor say. Most doctors push another drug or treatment and never mention diet and nutrition. I don’t believe it can heal all things, but I think nutrition can support the immune system, help keep yeast under control – even with daily antibiotics, and overall just helps the body to grow healthy.
Over the last few years researching Lizzie’s condition and the health aspects of how the body functions, I have discovered a wealth of knowledge about food and how it affects the human body, including the immune system, the overgrowth of yeast, and constipation. All things that are major parts of Lizzie’s life. So more on that later… it’s a whole different post (or 2).
So we are back to the waiting game. Wait and see. I’m thankful for the chance to have some waiting time, but it doesn’t make the actually “waiting part” any easier. It is nice to have 7 weeks before another doctors appointment, so for now I will remain thankful for an infection free little girl and try to leave tomorrow for tomorrow.
