We use the blog as a scrapbook...so I do feel the need to "back-blog" for the month. First,backblog entry...Kidneys. Not to be a drama-mama...but there is almost nothing harder for this momma than when my little one is sick. On August 4th we got some surprising information about our Maggie. We learned that she was suffering from a kidney disorder.
We had been noticing Maggie having puffy eyes in the mornings off and on for about 10 days, that would usually resume by the end of the day. We thougth it must be allergies, or tired eyes (she has had some sleep disturbances since Sadie was born). The puffiness had began to get worse and on Monday the 2nd and Tuesday the 3rd, it was really bad. It was her entire face and also her belly and thighs were swollen too. We had a pedi appointment for Wednesday the 4th to check everything out.
Maggie's pediatrician did a urine test, and knew right away that Maggie had a problem called Nephrotic Syndrome. She had massive amounts of protein in her urine. There is never supposed to be protein in the urine. We left in shock. We thought Mag's had allergies and never imagined it was her kidneys. We scheduled some lab work, a renal sonogram and an appointment with a nephrologist (kidney specialist) for the following few days.
On Monday the 9th we met our nephrologist Dr. Pena and got a more clear understanding of the what's, why's and plans for treatment. Thankfully, the treatment of choice for her disorder is a very simple, cheap and relatively easy one. She will be on steroid therapy (to decrease the inflammation in her kidneys) for a total of 5 months. Yes, 5 months! There are some minor side effects of long term steroid use...like increased appetite, increased wt. gain, facial shape rounding and of course increased energy levels. We feel these are a small price to pay for functioning kidneys. During Mag's first week of treatment she lost almost 6 pounds of fluid and her urine output returned to normal. After 2 weeks of treatment her protein levels in the urine went down from a +4 to a +2 (scale is 0 to +4). The goal is to have 0 protein in her urine. I am so happy to report that on Friday August 27th, I checked Mag's urine and it only had trace amounts of protein. Praise the Lord for healing and recovery!
We have discovered through several processes of elimination (ruling out an autoimmune disorder) that the cause of her disorder is likely related to her allergy shots she has been receiving for the last 10 months for her severe allergy to fire ants...see past post here for a recap of that dreadful event! We have been advised by Maggie's pedi, her nephrologist, her allergist and an internationally known medical expert on fire ant allergies from the University of Mississippi to stop the shots. We are taking our chances with the ants in order to preserve and protect Maggie's kidneys.
Nephrotic syndrome is triggered by any assault on your immune system. The shots Maggie was receiving were directly affecting her immune system. The whole point of allergy shots is to alter the way your immune system reacts to certain allergens.
We are thankful that we likely know the cause of her nephrotic syndrome, that treatment is easy and also so very prayerful that stopping the shots will hopefully mean that she will not ever have another kidney crisis. With nephrotic syndrome, it can be a one time thing or come and go over the years. Kids tend to outgrow it by puberty.
All in all...you would not know Mag had anything out of the ordinary going on. She is more active and rowdy, has a bigger appetite and is filling out some...but is happy and her cheerful little self.
Thank you to all those friends, family and blogger buddies who have prayed for us. It means more than you will ever know.
Love to all,
Leah
This was when she was so swollen and had all the extra fluid because her kidneys weren't functioning well. She had extra fluid in her abdomen (ascites) and around her lungs (pleural effusion). Heart breaking pictures for me...but she is still smiling!
This is Maggie today...looks like her old self! Praise the Lord!
3 comments:
Wow! I am so sorry that you guys have had such an emotional-roller coaster month! But, Praise God that Maggie is going to be fine! Such good news. Love to you guys.
what a crazy month. sorry that you all had to deal with that but also praising the Lord for his provision in all of it. i love your family and miss seeing you. hope to meet sadie soon!
Oh, how those before pictures break my heart! I am so sad that our Mags has had to go through so much in the last year. What a trooper she is, though! I am constantly amazed at how she takes it all in stride and just wants to play. What a perfect patient she is! ;)
Praising the Lord that the cause and treatment plan are best case scenario!
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