FSGS WHAT????

What a whirlwind our life has been in the last couple of weeks! After a second relapse of Brinlee's nephrotic syndrome and just a few weeks away from her final prednisone wean, we were told she would need a kidney biopsy. At that time, I still was not comprehending everything and thought things would be ok. The thing is, she did so well on Prednisone. Her urine went clear of protein in no time and mostly maintained there until we would almost be done with the medicine. So in my mind, she really responded well, but for some reason just couldn't go to a really small dose without consequences.

To top it off, her swelling and protein increased right before Christmas weekend because in my family, nothing ever happens on a normal weekday. Christmas Eve she went in for a pre-op physical and labs and her biopsy was scheduled for that Thursday. The experience was not as smooth as anticipated and communication was lacking from the beginning of her hospital stay, but in the end, they got an adequate sample. Could you imagine, sometimes that is not the case? I would have been completely devastated if we went through all of that, only to find out, they couldn't get an adequate sample from her kidney.

A week goes by and we continue on the high dose of steroid that was increased a week prior and I am waiting to hear back from her specialist. As Friday arrives, I make a call to the clinic and am told that I can talk with the Care Coordinator. Luckily or not so luckily, I know that the Care Coordinator is not working on Fridays and tell the operator that I need to have Brinlee's specialist paged rather than talk with a machine that won't get back to me til Monday. I explained that we did not experience great communication from our hospital stay hoping she will realize that this phone call means more to me than she could know and hoped the frustration would seep through my voice to her end of the line. After she tells me that our specialist is not available, she puts me on hold to look further into my urgency. When she comes back to the phone, she tells me that our specialist is actually working and that she would call me back as soon as possible. Frustrating, but glad she really looked into the search for Brin's specialist.

A couple hours later I receive a call back and the news is far from what I expected. "Brinlee has FSGS nephrotic syndrome." I reply, "Wait fs...what was that?" She says "It's called FSGS and at this time there is no cure. She will need to go on a different medication called Cyclosporine for an indefinite amount of time until dialysis or transplant are needed." These were the words I heard on the other end of the line. I asked, "So she will never grow out of it like we thought earlier?" The response, "That is correct. At this time there is no cure. I will need to see her in the clinic soon so we can go over this." That was a phone call I will never forget. I hung up and cried and cried and cried. I tried calling Dave, who was running an errand, and wouldn't you know I got his voicemail all 7 attempts to get a hold of him?!

We had dinner at friends' house later that night and so I didn't have much time to research. By the time we got home, I just wanted to sleep from mental overload.

On Saturday, I started looking at well respected sites used by the hospital I work at and also at sites that support nephrotic syndrome research and found that people can go into remission and that there isn't a whole lot of concrete data to really know why this happens. FSGS, focal segmental glomerulosclerosis, is an autoimmune disorder that causes her body to attack it's kidney leaving scars in the areas that filter which makes these filters inadequate to send protein to the blood stream, thus causes protein to build up and spill in her urine. Swelling was the number one thing we noticed in her initially. I found forums with people dealing with FSGS who have gone on gluten free diets and went into complete remission and off medications. After LOTS of prayers, I felt like this was our answer. If we can help in any way, I was ready to try and this was something I could do.

On Sunday after church my dad and step mom took me to Whole Foods so I could get a "taste" of gluten free options. After picking out a good variety of food choices, I was putting my groceries in the SUV and because I shut the window part of the vehicle before the door, the window completely shattered! I couldn't believe it! You know what though? We all just laughed! Dad and Patti couldn't have been more understanding and kind about me breaking out their back window. On the way home, I called Dave to tell him what happened and his first words were, "Oh no, really? Well, I don't know where to begin or who to call first?" I said, "What are you talking about? Patti already called the glass company and....wait! You know it wasn't our car right?" A breath of relief hit him and he said, "Ohhh well thats good! I was gonna say!" Oh boy Dave! My dad cleared all the glass that was still stuck to the window frame and one piece was left. I noticed it as we were driving back. It looked just liked an angel wing! And, to top it off, at church the pastor was talking about angels and how if you have an angel on your Christmas tree it represents that you are a person who needs a little bit of reassurance that you are doing the right thing. Not a doubt in my mind that God was telling me that gluten free was the right thing to do and he gave me reassurance with the angel wing!

So Sunday night January 6th was the official start of Brinlee's gluten free and as much organic as possible diet. We started her on Nat Mur which is a medication recommended by a homeopathic doctor thanks to my Aunt Karen who recommended him, gave me his phone number, and even bought the medication. We put her on a multivitamin, omega 3, and an immune support vitamin. The second night on this diet she was diuresing (peeing a lot) so much that I changed her night time diaper 4 or 5 times that night. She was looking thinner and healthier. She was more active, more happy, and even eating a lot more! We are also decreasing her salt and have switched her to Lactose free milk. She continues on the high dose of steroid which was increased that Thursday before Christmas, so the only change we have made was diet and it is working amazingly! Her urine, which we test everyday, went from 30 or more of protein since her relapse to negative or a couple trace proteins since the Sunday we started her gluten free diet. There is no way that this is coincidental. I have many family members on my dad's side that have autoimmune diseases, which get worse depending on their diet. My dad has Crohn's Disease, grandma has Diverticulitis, Aunt and cousin have Ulcerative Colitis, and Aunt with Lupus. This past Sunday we had a Birthday party for the girls and before I told Dave's sisters about the diet, they were already expressing how good Brinlee was looking! It's not my imagination! I'm not the only one seeing this! Her negative urine is proving to me that this is working! I cannot wait to find out how much she weighs tomorrow to see just how much fluid she has lost. We see the specialist tomorrow and will make some big decisions. I truly hope she is open to my ideas. Brinlee's primary doctor is sceptical about the gluten free diet and talks about how big of a challenge it is and I say there is no challenge that compares to that of watching your child go through dialysis or a transplant. I am up for this gluten free challenge and to be honest have been pleasantly surprised at how easy it actually is!