God's Plan

Savanna and I had an amazing conversation today and I wanted to document her wonderful spirit!
We were sitting at the kitchen table eating popcorn, one of her favorite snacks!
Savanna says, "I wonder what God's plan is for my life!"  In my mind I thought, wow an 8 year old is wondering what her life may look like.  So I asked her if she had an idea of the kind of life she would want to live.  She asked me if I knew what God's plan was for me and I told her yes, I went to college (which is when I became a follower of Christ), after I graduated I started dating your daddy and we got married and had 3 kids and I believe that was some of Gods plan for me. Savanna smiled and then said I wonder if I will get married and have 3 kids just like you, I just smiled back at her.  And then she said "I want his plan to be something BIG!"  I asked her what she meant by BIG.  She said you know that movie Soul Surfer, I said yes, she said with excitement "She got her arm bit off by a shark!  I want it to be something big like that."  I hid the big GULP and the GASP as I visioned her as a missionary in a far, far away land living in a village.  I would love that but I would also love to have her close to home. 

I took this time to talk to her about the plan God has for her right now!  She is a brave, sweet and young girl who has a rare kidney disease, that is BIG!  She agreed that was her something big for now.  I told her that we have been able to witness to people the power of prayer because of how well she is doing.  I also told her about the little girl that is her same age who is in and out of the hospital because she is so sick and her body is not handling the disease as well as hers.  And our sweet girl said, "I wish I could take her place because I don't want her to feel so bad and I want her to be able to go to school."   

Savanna God does have a big plan for your life and I am excited to see what the plan is year after year!  We are so thankful for your sweet spirit.  You are precious!!!

Awareness for Kidney Diseases

We caught our daughter's kidney disease as a fluke (aka blessing). 

We caught it by doing a urinalysis.

It is my mission to raise awareness for kidney diseases and any other type of disease

that can be caught just by doing a urinalysis! 

I also hope to educate you on why a urinalysis needs to be done every year.

PLEASE! Parents, if you child's doctor does not do a yearly urinalysis as part of their check-up it is up to you to ask for one.  As women we pee in a cup once a year as part of our yearly check up at the OB's office, it is a normal standard procedure.  A urinalysis can catch so much, see this link for a run down of all the things they can check for; just by putting a dip stick in a cup of urine.  They can do more testing by looking under a microscope too.  This type of test is a way of early detection, don't you want to know if your child is 100% healthy. 

ASK for a urinalysis for your child every year.

It is all done in office and you get the results back that day,

it is a simple non-invasive way to know your child is healthy.

MGPN Type 1 is the kidney disease that my daughter has, this disease has very little signs, so little that it could have gone undetected for a few years.  By catching this early we have been able to get her on medication to help with her kidneys.  Her kidney doctor told us, "It is hard to put her in this category because she appears to be so healthy, most kids that have this disease don't look healthy and are not healthy."  When he told us this, I praised God that my mother's instinct was to take her to the dr because I thought she might have a UTI. 

Early detection is key!  I cant imagine the situation we would be in if this disease would have been caught a year from now.  Her sweet little kidneys would have been damaged more then they are now and it scares me to think of what stage she could be in.  Thank you Lord that we caught this so early!   

Visit this website for ways to protect your kidneys.

PLEASE HAVE YOUR CHILD GET A URINALYSIS DONE EVERY YEAR! 

Especially if you have any type of disease that runs in your family.

(As far as we know there is no family history of kidney disease in our families)

Now that I have made you say urinalysis 8 times here are some pictures to help you see the difference between healthy and non-healthy urine and what it can look like!

Healthy Urine

of course healthy urine can look different with the variations of yellow.

Savanna's urine below

This was her urine from the March 8th 24 hour urine collection.  As you can see it is darker in color so this could mean that she is leaking more blood, her protein looks the same as the picture below.  They can't measure blood loss in the urine and her protein loss was 1904mg. 

Savanna's urine below

The above picture was taken January 9, 2012.  It looks like the color is better than the in the picture below.  This urine still has a bit of a brown or reddish tint but defiantly more yellow then the picture below.  AND the most exciting part, not much white foamy stuff lurking in her urine, which means her loss of protein is less!  As of  the Jan. 13th she is losing 1920 mg of protein a day.

Savanna's urine below

Her urine has a reddish tint to it, which is the blood that is leaking from her kidneys.  The white foamy looking stuff is the protein that is also leaking out of her kidneys.
This pictures was taken November 2011. 
This collection of urine she was losing 2193 mg of protein a day.

Timeline

This is Savanna's Kidney Timeline. 

If you want to read it from the beginning scroll to the bottom of the page and read going up. 

This journey began January 20, 2011.

10/23/15
Had her normal check-up. He is very pleased with her growth!! That is a HUGE sign, it shows that her kidneys are in good shape (not chronic)!  He is now wanting to up her other bp med from 5mg to 10mg. The wonderful school nurse is checking her bp this week!!
The plan is to do a 24hr urine in December to see if the new dose is working.

9/30/15
Did her re-test and sadly now her protein loss is 1526mg. So Dr. Quan upped 1 of her meds from 12.5mg to 25mg. We are monitoring her bp at school 2 times a day.

8/27/15
Woke up with a strange rash on her face, byndreal did not work so I took her to her pedi, Dr. Waw. She said it looks like fifth's disease and it would run its course. I then spoke with Dr. Quan and he said that could have affected her lab results. So we are waiting until the rash is 100% gone and re-testing.

8/21/15
Dr. Quan called with Savy's results. Her 24hr protein loss was 1382mg so he suggested to up the dose on her meds. We asked for a re-test before we did this and he agreed.

June 2015
We were suppose to re-test but she had strep throat and a double ear infection.  After being on amoxicillin for 1 week she broke out into hives. She is now allergic to penicillin.

4/8/15
Now her creatinine is normal at .56 but her protein loss has sky rocketed to 1422mg! So confusing!!

3/6/15
Her protein is down some at 475mg but now her creatinine is high at .74 so off to re-test!

12/9/15
Her protein loss has gone up, 776mg. As of now we are just going to re-test in 3 months. Everything else looks good.

10/21/14
Had her well-visit with Dr. Waw, her pedi. All is good but she has only grown 1 inch and gained 3 pounds in one year, growing 2-2.5in is normal for her age. Dr. Waw told us that this is her "normal" with a chronic kidney disease she will not grow like she normally would. As of now it is not a concern, blessed that she is as healthy as she is!

6/3/14
Her labs were good!  Protein loss is 421mg, so it has stayed about the same. We will take it!

Week of April 28th 
She has been waking up with a puffy face. This could be because of allergies or because of her kidneys. The school nurse is watching her joints while she is at school.

November 2013 -March 2014
We had her blood drawn on Oct 30th and sent to Iowa State. The waiting was long and frustrating at times. We got a bill from the hospital for over $40,000!! Thankfully it was a bill they prematurely sent our before insurance covered it 100%. Praise Jesus!! And the communication with the dr office is not always great. They did not realize they had the results back from Iowa State so it made for a frustrating few days trying to figure out where the communication breakdown was with the 2 facilities. So now here we are March and finally have her results back from Iowa State.
They tested 8 of her genes. Our hope was that one of them caused this disease, that would mean we could treat that one gene and she could possibly be cured from this disease. That is not the case for her :(
We did get some wonderful news though! It is not caused by any of her genes therefore it is not genetic, she cant pass this along to her children!  We also found out that she will NOT develop lupus from the disease nor will she ever get lupus.
Our next steps our to stay on her current medicine and continue doing her 4-6 month urinalysis, lab work and dr visits.

12/11/13
Her protein loss is now down to 417mg, this is wonderful. Below 100mg is the goal but it is down from last time so hopefully it will be even lower in June! Her creatinine remains low at 0.59, this is GOOD!! Her BUN is at 23, it has not been this low in 1 year!!!! And her serum albumin is 4.0, this is a good normal range!!
GREAT results today!!!

12/08/13
Collecting urine today, so fun!  We are thankful for an understanding teacher and a helpful and wonderful nurse at her school!!

10/30/13

The testing is 100% covered!!!  We had the labs done today at Medical City and they will be sending it off to Iowa State.  The gene testing takes 4-6 weeks.

9/13/13

Her repeat creatinine is now 0.54!!!!!!!  Praise the Lord.  He still wants to do the testing at Iowa State and says there is no reason to do a repeat biopsy!!  We are excited to do the testing and hopeful it will give us some answers.  Now we need to find out if it is covered by our insurance.  If it is not the testing cost around $6000.



9/12/13

We had a few mishaps with the lab and had to do a few repeat labs to get the lab results we needed.  It was frustrating and did not get the repeat 24 hr after attempting 2 times!!!!  So we waited until her normal every 4 month apt to do her 24 hr and blood work done.  We saw Dr. Quan today and her protein loss is 710mg, so that is better then it was in May!!  Her creatinine was very high at 0.97 so he is had us to repeat labs today.  He is very concerned about this number and talked about doing a repeat biopsy and doing the testing with Dr. Smith at Iowa State.  We are praying her lab work comes back in normal range.

 

5/7/13

Well we were hoping for better results then we received but we will continue to preserver.  Her protein loss was 1327mg per day.  Last time it was 284mg so it has gone up quite a bit.  BUT her creatinine is in normal range now at 0.62 so that is good and her serum albumin is even better then last time at 3.8!!  He does not what to change any meds and wants to repeat her 24 hr.

    

4/23/13

I can not believe it has been 5 months since I have posted on her timeline, that is a wonderful thing!!  We did a 24 hour urinalysis yesterday and her urine looked good for the most part.  Just a tad red and sometimes she had traces of protein.  She had her blood work done today and she was a champ like always!!  We go see Dr. Quan on May 6th to get the results.

 

11/6/12

Savanna saw Dr. Quan today!! AMAZING report! Her protien loss is now only 284mg per day!! He said once she is below 200mg he will consider slowly weaning her off of her meds. This will show us if her body is actually getting rid of the disease or if it is just the medicine helping her kidneys stay stable. Her creatinine is 0.65, so it has gone up a little, we need it lower than 0.62. And her serum albumin is now at a normal range of 3.6, below 3.4 is not good.

Her BUN was 45, he is still not concerned about this. I even asked her pedi and he said as long as her creatinine was good then the BUN is not a number to worry about.

Dr. Quan also told us that her kidney function is at 104%, praise the Lord!! He said that we dont have to worry to much about her low sodium diet over the holidays since she is doing so good!! And he said we can wait 6 months to come back and see him, instead of our normal every 4 months!!!

    

11/1/12

24 hr urine collection and blood work done, hoping for good results.  Her urine looked better then ever!!!

Mid September

Started all the kids on 500mg of fish oil.  Here is a website to show you the benefits of taking fish oil.  Savanna is taking it for inflammation of her kidneys, her disease is considered an autoimmune.

7/5/12

She had her quarterly appt today with Dr. Quan, which means we did blood work before the appt and got the results today.  BUN was 43 (this number keeps climbing up but he is not worried about this number because it depends on what you eat before the test).  Creatinine was 0.63 with a serum albumin of 3.5, this is back up so that is good!!

5/12/12

Dr. Quan wanted us to do another 24 hour urinalysis, she is now only leaking 518 mg of protein a day!!!!!!!!!  Answer to lots of people praying!  The low sodium diet is going well and you cant say for sure if the diet is helping but it seems to be.

4/12/12

We did a 24 hour urinalysis and I am happy to announce that she is now leaking 804 mg of protein a day!!  She has cut her number in half!!  We are getting somewhere with this new med and diet.

3/20/12

Savanna started her new med today so she will have her blood pressure checked 2 times at school and we will check it one time at home.  With the other meds her bp drops down and then at the end of two weeks her bp has stabilized to normal. 

I have also done a ton of research on a low sodium diet which we started today, by that I mean keeping track of her sodium intake.  She has to stay under 2000mg a day.  This will defiantly be an adjustment but one we are willing to do!  Goodbye cheese and pickles ... hello lots of pasta and homemade sauce.  Thankfully we said goodbye to cheeseburgers a month ago and hello to Tilapia and fresh veggies.

3/14/12

We had our visit with Dr. Quan today he said her blood work showed normal kidney function, serum albumin is 3.2 (a tad low), the BUN is 31 and the creatinine is 0.53.  All pretty normal, her serum albumin has gone up from 2.6. This is a very good sign, this shows the inflammation of her kidneys are getting better!  Normal serum albumin range is 3.4 - 5.4 grams per deciliter (g/dL), so we are almost there!!
Her 24 urine collection showed a loss of 1904 mg of protein a day.  He wants to see this much lower, he wants it out of the 1000's.  Again it should be zero and that is what we are hoping for.
We came with a list of questions today and he spent a good 20 minutes with us just talking about our questions and explaining to Savanna why she has a kidney disease.  She is starting to notice her urine looks different and wanted to ask him why her kidneys are inflamed.
We are thankful that she has this disease now and not 15 years ago!!  And we are hopeful that in another 15 years the advances in helping this disease will be huge so that she can have a long and normal life.  We are so grateful that we caught this early, praise God!

So the next steps are to change one of her meds to Ramipril (no longer taking Enalapril), the new med is a longer acting medicine and he is hoping it will let less protein through her kidneys throughout the day.  We will do another 24 hour urine collection and blood work in 1 month to see how the new med is working.  And she will have her quarterly appt in 4 months.    

3/9/12

Went to the lab to have blood taken for her 6 month check.  Anxious to see how the blood and urine look.

She has not had any puffiness or joint swelling.  As a family we decided to eat healthier, fresh veggies and fruit, fish and chicken and mainly food items with natural ingredients only.

3/8/12

The waiting game for 2 months! We have her on a low sodium diet and are on the look out for puffiness in the face or joint swelling.
Did a 24 hour urine collection (5th one) with the help of the wonderful school nurse. Her urine looks like it has more blood and the same amount of protein. You can see the picture above.

1/13/12

Dr. Quan called with her lab work results.  She is now losing 1900 mg/day, so it is down 1000 mg, which is great!  To be honest I was hoping for better because her urine looked "good".  She started at 792 mg/day, so I was hoping for somewhere around that number.  We still have a ways to go to get to the big ZERO but we are hopeful that we will get there.  She will go back on March 14th for her quarterly appt.  The weekend before we will do another 24 hour urine collection. 

1/9/12 

Today we are doing her 4th 24 hour urine collection to see if her meds are working.  This collection is being done at school.  I am hopeful because her urine looks good at times.

12/?/11
Dr. Quan called with her results of the urine collection, she is now losing (leaking) 2952 mg/day of protein.
So he is starting her on 12.5 mg of Cozaar (aka Losartan) along with the 5 mg of Enalapril (aka Vasotec). He said these 2 drugs together usually help with inflammation of the kidneys.

11/28/11
She did another 24 hour urine collection, this time is was done at school because we messed up on 2 different days at home.  That was discouraging but now we know she can collect the urine at school with the help of her wonderful nurse.

10/23/11
This has nothing to do with her kidneys but it needs to be in the timeline, ha!  She fell in a bounce house and broke her humerus bone!  She was in a cast for 7 weeks.  No physical activity for 9 weeks.

10/3/11
We monitored her blood pressure for 2 weeks.  The school nurse has been very helpful in this process.  At times her bp would get low but not scary.  Then there were a few times her bp was 88/48, to me that is scary.  I called Dr. Quan and he said it all depends on how she feels, if she feels fine then she is but if she feels dizzy then we should be concerned.  I asked him what to low would be he said 80/40.

10/2/11
We did another 24 hour urine collection that showed her elevated protein excretion of 2100 mg/day.  Last time is was 792 mg/day. So he is doubling her Enalapril to 5 mg.

9/19/11
We meet with Dr. Quan so he could go over all the blood work.  Her normal blood work showed, normal BUN 27, creatinine 0.42, albumin of 2.6, The C3 was is low at 93 and C4 is normal at 37.  The extensive testing showed all negative!!!  EBV, CMV, hepatitis B and C, ANA and ANCA.

6/29/11
Started on a medicine called Enalapril at 2.5 mg a day, we have to monitor her blood pressure for 1 week to make sure the med is not lowering her bp.  Now we wait for 2-3 months of her being on the medicine to see if it is helping with the inflammation of her kidneys. 
In the meantime they are going to run some more extensive blood tests to see if they can figure out why she developed this disease. We are hoping all the test come back negative even though it would give us a reason for this disease it would also mean she has another condition.

6/14/11
We meet with Dr. Quan to get the results.  Here is what we were told, her biopsy showed a picture of PMN's in the mesangium with slightly double contours and a lobular proliferative glomerulonephritis-diffuse.  The immunoflourescence showed Ig G, CIQ and C3.  The electron microscope showed subepithelial deposits as well as subendotehlial deposits.  The overall clinical picture is consistent with Membranoproliferative Glomerulonephritis Type 1. 

6/3/11

The day of the biopsy, go here to see pictures of our brave girl!
2 weeks before we get the results back!!! Another waiting game, nail biting and impatience!

5/16/11
Meet with Dr. Quan to see what the next step is going to be since he is now thinking this may not be post infectious.  He told us that it is now time for a renal biopsy, GULP!

5/4/11
We saw Dr. Granger (our pedi) because she was having tummy pain for 4 days.  He was not sure why but checked her urine and it still has protein and red blood cells, this is not a good sign.  She has also been waking up some mornings with edema around her eyes. 
He did more blood work and the results, BUN 22, creatinine 0.35, albumin of 2.6, The C3 was is low again at 81 and C4 is normal at 35. 

2/17/11
We took her to see Dr. Quan because she has a body rash, I knew she was probably okay because she had just gotten over strep.  BUT it did concern me a bit since he told us to keep our eyes open for a rash.  I also noticed she had some spots on her skin that were darker then her normal skin color so I wanted him to check those spots as well as her rash.  At our first appt he asked if she had any spots on her skin that were darker then normal, she has a few birth marks but nothing concerning.  And the rash probably was from strep and he was not concerned about the 4 brown spots on her back, he said they were not dark enough but did recommend we see a dermatologist.

1/28/11
Meet Dr. Quan, our refereed Pediatric Nephrologist.  He did more blood work and the results, BUN 18, creatinine 0.45, serum albumin of 3.4, The C3 was previously low at 81 is now higher at 111 and C4 is normal at 36.  The ASO is only 7.3, the ANA was negative.
The 24 hour urine shows an elevated protein excretion of 792 mg/day with normal low calcium urinary excretion.
And now it is a waiting game! We are still hoping it is a type of kidney disease that was caused by some type of infection, post infectious glomerulonephritis. So whatever the infection is will go away and her kidneys will return to normal. We will know this in a few months. In the mean time we are to keep our eyes open to edema (swelling) around her ankles, joints and face. Or any joint pain, rashes and reddish urine.

1/24/11
Renal ultrasound, all normal!  Normal kidney size and no hydronephrosis.  Kidney function looks good and normal.

1/20/11

Took Savanna to see Dr. Granger because I thought she had a UTI.  He informed me this day that she does have a kidney disease because of the amount of protein and red blood cells in her urine.  He was hoping it is just glomerulonephritis, which goes away on it own in about 6 months or less.  He wanted to take percausions so he did a round of blood work and made us an appt for a renal sonogram to check her kidney function.  Her test showed BUN 17, creatinine 0.45, serum albumin 3.5 and normal DBD.  However, the C3 was low at 81 (90-180) with normal C4 of 46 (16-47), negative ASO and ANA.

Biopsy

This picture was taken 2 weeks after the biopsy.

Savanna was a sport!  I am sure at times it may have been scary for her but she was excited about spending the night in the hospital with mom and dad!  We picked her up from the last day of school with a bag full of goodies and the news about going to the hospital in the morning.  We had a fun evening planned for just her and made other arrangements for our other 2 kiddos.

We were very honest and up front with her about what a biopsy was and what was going to happen.  The staff at Medical City Dallas were amazing and very helpful.

The funniest part was also the hardest part for me.  They allowed us to be in the room with her where they were going to do the biopsy as they were putting her to sleep.  She played a joke on us!  As soon as they gave her the gas she closed her eyes and tilted her head like she had fallen asleep.  I asked the anastigoligst if it really happened that fast, he said "no she is playing possum" and started poking her.  She started laughing opened her eyes talked to us for a bit and tried to play the joke on us again, then I had to turn my head as she was going under.    

To see all the happenings of the hospital stay click here.

How it all started

I took Savanna to see Dr. Granger on January 20, 2011 because I thought she had a UTI.  She went pee 4 times in 30 minutes and only a little came out each time.  I thought probably not a big deal but it was worth checking out just to make sure.  Plus my momma instinct (aka, the Lord) kicked in and I knew we needed to make an appt.

Her urine showed red blood cells, 3+ and protein, 3+ (FYI, that is A LOT and not normal).  If it were a UTI she would have had white blood cells.

He scheduled a renal sonogram to check for kidney function and ordered a series of blood work.
During this appt Dr. Granger told me that she does have a kidney disease and he thought is was GN, he told me about the 3 stages of this disease.  He was thinking it was going to be one that is caused by infection, mainly strep throat.  So one of the tests was to check to see if she had strep that was untreated.
We did blood work on the 20th and received a phone call on the 23rd saying that she had not had strep throat.  GULP!  Not good news, we were hoping that she did have untreated strep so now we are looking at a disease that is more serious!  It is possible that we are still looking at GN (inflammation of the kidneys) but he referred us to a Pediatric Nerpheroligst, a doctor that specializes in kidney disease.

We are VERY blessed to have a pediatrician who knew enough to know what he was dealing with and what steps to take.  Since this has happened I have read other families stories and the disease went undiagnosed for a while because the doctor did not know what he was up against.
To know the rest of the story see the timeline above.