Monday, July 16, 2012

My child is swelling!!!

I guess I'll start all this from the beginning... Two weeks before my daughter's third birthday she caught a nasty virus(they think it must have been strep even though she tested neg). She was sick for a few days (fever,rash, ect.) and then developed an ear infection. She was prescribed azrithromiacin. Some time that week we noticed she was gaining weight but didn't think much of it.

Well, the morning after starting the antibiotic she woke up totally SWOLLEN. From her eyes to her toes; this was disturbing especially considering she was supposed to be past the virus and getting better. Along with the swelling, she was not going to the bathroom hardly at all, barely wanting to eat, she just laid around and slept all day- naked. This was partly because the swelling was so uncomfortable clothes didn't feel good on her body, and partly because most of her clothes didn't fit at all. This went on for a week. They first thought it was a bad reaction to the antibiotic, then allergies, then a UTI. Finally her doctor wanted her to come back in ( as I was on the phone explaining to the nurse how it did NOT seem like a UTI and she was so swollen she couldn't wear her clothes...I was not going to hang up until I had a better explaination).

 Once there,we were finally able to get a tiny urine sample- a tiny sample that revealed 3000++ levels of protein in her urine! Well, finally someone confirmed that deep motherly intuition that something was NOT right with my child. She was also 6 lb heavier than the week prior, due to water weight and pitting edema. From their we headed to The Children's Hospital at Egelston, in Atlanta. We were their 3 nights and learned about her diagnosis: nephrotic syndrome (ns).

Ns itself is not a disease but is what happens when the kidneys spill protein into the urine ( instead of the blood) thus causing great swelling, lack of energy and urine out put, and can potentially lead to blood clots and very serious conditions such as kidney failure if not treated properly. It is most common in kids, however, they don't know exactly what causes it and there is NO CURE. Yet. On the up side, most kids outgrow it by their teens. Their are two types: minimal change ( what Emma Kate has), and FSGS which is far more serious and often ends with a transplant. 80% of kids have the minimal change and do respond well to treatment. The standard treatment is steroids, (prednisone) often in combination with diuretics. All people respond differently, but Emma Kate had a great response and by the time we left the hospital she was back to her normal size and looking like herself. Which was the best feeling in the world!

 Within one week she had no protein spilling ;). After three LONG months on the med she was able to come off. We were all excited because we knew the SWEET Emma we used to always see would be back. Steroids have many, many side effects. In toddlers it's mostly behavioral. Yes, because they have such amazing temperaments already :). For about 1 month she had temper tantrums ALL day LONG!!! We never knew what would set her off..kicking, screaming, hitting, crying... It was awful. I soon realized certain things, like red and blue food dyes made the behavior FAR worse. Needless to say, we avoided them. I began fiercely searching the internet for natural ways to treat ns. I came across many food related things, which I'll talk about under " What To Eat?!" Unfortunately, before I could get much figured out, 6 weeks off the med she relapsed and we were forced to go back on the much dreaded steroids. However, I insisted on a lower dose and other than the first day we see no behavioral effects from the med this time ( praise God!). So that's where we are now. She only has two more doses until were off again. Hopefully for a LONG time!

No comments:

Post a Comment