Clare had her visit with the pediatric nephrologist last week. And it was so-so news. The good news is that her kidney scan did not show a significant increase in the amount of calcified tissue in her kidneys compared to her scan six months ago and there was no evidence of kidney stones. The bad news is that the damage that has been done is permanent and that tissue will never function again. The good news is that Clare is still young and her kidneys have lots more growing to do. If we can halt the calcification process now, when she is an adult, a scan will barely show the calcified tissue. The bad news is that if we can't, Clare could face renal failure in the future. It was a lot to take in after a long day at the hospital.
The plan right now is to alter Clare's diet. Not what I wanted to hear from a selfish standpoint! She is on a restricted calcium and low sodium diet now. The sodium is not really a big deal since we are low sodium in our house to begin with. The calcium is another matter. She is not supposed to have more than 800 mg of calcium per day. Which is very tough considering that she used to get about 900-1200 mg from her milk intake alone! Never mind the yogurt, cream cheese, macaroni and cheese, cheese quesadillas, the list goes on and on and on. And now that I am scouring labels, I am finding that so many foods are fortified. For example, the pancakes Clare loves have 200 mg of calcium in them. She has her pancakes and a cup of milk for breakfast, and we are already at over 400 mg. So it's going to be tricky. It's going to take some more planning and figuring on my part. (Such as finding different pancakes for Clare - she eats them daily, so I buy frozen ones because I don't have time every morning to make them from scratch. Now I will find a way to make them where they are lower in calcium and sodium, make a whole batch on the weekend, and freeze them for the week.) It's going to take more forethought in meal planning than I give on most days. I plan my dinners out 1-2 weeks in advance, but breakfast and lunch are almost never planned. Yesterday, I had already planned on trying out a new Tex-Mex recipe for dinner and making cheese quesadillas for those who turned their nose up at my new food (which usually includes four little ones around the table). However, I did not think of that when I fed Clare her pancakes for breakfast, then after a tough day at school (she had been out of school for over two weeks due to doctor's appointments and snow days and is having some readjustment), I promised her macaroni and cheese and chocolate milk for lunch. Dinner comes along, and Clare is already over her calcium and sodium limit. Grrrr... I am sure eventually I won't even have to think twice about the combination of foods in a day, but for now, it's taking a lot to get there!
Clare will see the nephrologist again in March to test her urine and blood calcium again and see how the diet is working. If there is no improvement, then medication is the next option. However, medication for this in children with Williams syndrome is tricky in another way. They do not always absorb calcium properly in their bodies. By Clare's kidneys absorbing the calcium, it is keeping the calcium from being absorbed into her bloodstream and causing hypercalcemia (which can have its own list of symptoms). If the medication keeps the kidneys from absorbing the calcium, then she will have to be monitored to be sure that it does not cause hypercalcemia. It's a balancing act. So, as hard as it will be, I am focusing 100% on keeping Clare's diet in the limits we've been given. (As a medical note of interest, calcium likes to follow sodium around, so the theory with the low sodium diet is that if the amount of sodium going through the kidneys is lowered, then the amount of calcium following that sodium will be restricted, too.)
Also in March, Clare is going to have a vascular scan done of her renal arteries. Based on the renal ultrasound (which is not as good at looking at the renal arteries) and her blood pressure, the nephrologist feels she may have some stenosis in her renal arteries. If the vascular scan does show stenosis, then Clare will undergo a sedated MRA to determine how much stenosis. The vascular scan cannot do this and the MRA would be a one-shot deal, but we are choosing to go with the test that does not require sedation first. We don't put Clare under unless we know we have to! And, if there is stenosis, depending on what is seen on the MRA, we will discuss treatment options from there. Similar to her pulmonary arteries, she may need balloon dilations or stents to open up her renal arteries. For now, we continue praying that all this will work itself out and are grateful that Clare is as healthy as she is.
2 comments:
Tree, I certainly know the burdens of a restrictive diet - though I obviously NEVER had to handle those burdens in a family of six (seven!), four (five!) of those being kiddos. But I can tell you this - the weekend pancake idea is an awesome one. We do it all the time in our house, and once you're already flipping pancakes on the stovetop, it gets pretty easy to do a whole boatload more of them for the freezer. GOOD LUCK!!
Teresa~ You certainly are in a difficult position dealing with a little one who is 'picky' to begin with!! I pray that there will be easier days ahead for all of you! She (& all of you) will continue to be top on my prayer list! I understand, too, the restrictive diet routine, but never for a babe! Good luck, and God bless!
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