Lexi's "Stuff" Part 2...

( How come when you do things in parts, that by the time you have to do part 2 or 3, you are ready to be done and moved on the next thing?? )  LOL!! But I will at least finish!

The Treatment Options
We met with our pediatric Urologist last week--and I am soo thankful that I pushed to see a specialist versus just seeing our pediatrician. This guy was great--he spent 45 minutes JUST talking to me. Had me sit, he sat and we just talked. I asked him every question you can imagine about options, my concerns, pros and cons, surgery techniques, my own personal history, etc... He even pulled up her scans and went through them screen by screen with me. One thing he did notice was that there was some slight swelling on one kidney...something the tech had not noted. He said we will watch that but he expects that it is due to the reflux.
Our options are to do the antibiotics until the next appt and testing series, do nothing, or basically do nothing. ( He did not consider doing my alternative methods as doing anything since he had no research to back up the how they would work.)

But his answers to some of our questions made a huge difference in how we
decide to proceed. Basically the low dow is...

• Because she has grade 3 on both sides, the chances of it resolving completely on its own with age are less than 25 %. There is a greater chance that one side may go down in grades with age in which she could get off the antibiotic treatment IF we had had her on that.
• Although surgery has a 98% cure rate--thats not something we would go to at this young of age UNLESS she begins having repeated infections on antibitoc treatment.
• Although the testing showed a Grade 3 at this point, there is the chance its higher than that on either side. The testing is good...but not prefect and more often a child may have a more severe grade but that instance of refluxing that was caught on the scan, just happened to not be as bad.
• If antibiotics are started and she continues to have infections, that projects us towards a surgical solution more certainly. If we dont start the antibiotics and she has infections...well that does not tell us much because basically we expect infections since her reflux is pretty bad!

Why infections are so bad? 
Well of course we know any infection is not good, but its much more serious in a baby her age because it can cause scar tissue and also affect the growth of her kidneys. He did reassure me that some scare tissue she could likely handle, but the other complication that infection brings is affecting growth of her kidneys. Basically a child could have kidneys that completely stopped growing at age 5 and still be ok...but if growth is affected in any way before age 5, thats when serious complications arise. Most commonly being kidney failure requiring a transplant or hypertension ( high blood pressure)  as early as age 10.
This is why PREVENTION of infection is crucial, vital and basically the bottom line. Because she had her first infection so early in her life, she is already at a disadvantage...basically infection begets infection...so one already increases the chances of another.

I expressed my major concerns with prophylactic antibiotics--and he understood them and agreed with some...but he also said that if we weigh the pros and cons of the antibiotics to the damage done by more infections--infection is much worse than any of my antibiotic concerns...and while I didnt want to admit that was true ....I knew it was.

So his proposal was this:

• Start on prophylactic antibiotic regime immediately. Low dose of one the "low  on the food chain" types, that way if she got an infection, we still could bring out the big guns to wipe it out.
• Continue this until she is one years old--at which we will also repeat all the testing. The VCUG to see if the reflux has decreased with age and the sonogram to check for swelling and kidney growth.
• If her reflux grade goes down, he would encourage us to stop the antibiotic treatment to see how things go. ( this actually was very encouraging me as everything I had read said that the antibiotic treatment should be done indefinitely.)
• And basically we just need to buy ourselves some time. Either for age/development to decrease the reflux OR for her to get older so that surgery is safer.

He told me that he would not think of me as a neglectful parent if we decided to decline the antibiotic treatment...but he also said that it decreases our ability to know more information if we delay the antibiotic treatment. He encouraged me to go home, talk it over with Shea and then go from there. We made a plan for if she does get another infection in the mean time and talked through the other things I will do to also help us avoid infection. ( no bubble baths, lots of water by me through breast milk, daily probiocti for her and me, discontinue cloth diapers and only use chlorine free/all natural disposable diapers, etc...)

Our Treatment Plan
After much discussion Shea and I made the choice to  do the antibiotic treatment. This was not an easy decision for me...actually this went against so much that I believe in and am passionate about. BUT the bottom line is--Shea felt strongly that we needed to do everything in our power to keep her from getting another infection. He said he felt that if we did not do it, it was like we were not doing our best to provide her the best chances of staying healthy. ( even though doing daily antibiotics for the next 7 months comes with its own health issues.)
My issue was that I felt that if we didnt do the antibiotics--we were taking a gamble. And although antibiotics are not ideal... kidney transplants or hypertension at 10 years old was not something I was willing to chance. The other problem was that the alternative methods I researched ( mainly colloidal silver)  while might possibly work, there was not adequate research to say how well it might work in this type of situation, with a baby as young as her for as long as we need it. AND because it is "alternative"--the urologists and pediatrician, who would be treating her, are completely unfamiliar with it and how it works...therefore we could never be guaranteed a complete continum of care taking all aspects into consideration...and that just felt very unsafe to me. I might be willing to do that with my own health...but not hers.

So really...this decision was not made easily.

But here we are...about a week into it and she is handling it so well. I was soo dreading doing the meds every night...but by night 4, she stopped fighting me and now just opens her mouth as I syringe them in. This makes this a bit easier on me because her fighting them so bad was really hard on me every night...so thank goodness for small victories!
We will continue to hope and pray that this treatment works and we can avoid any further infections. And that her body would be protected from any harm from the long term use of these antibiotics!