First we met with the nutritionist, then geneticist, then cardiologist, followed by blood work.
Nutrition and Genetics were pretty routine. The real information comes from Cardiology and Blood work.
We had an EKG and an EchoCardiogram and both showed a healthy heart. Praise the Lord.
They measure 2 levels each time we go. Muscle Enzymes (CPK) and Liver Enzymes (ALT).
Her CPK levels were 193 this time. Normal is 29-168. However a 'sick' child can get as high as 2000-5000. So her levels are not alarming but they are up. Her first check in November was 269, and down to 87 in January at her next check. So, the fact that they've doubled in 4 months is concerning, but they are still not super high.
Her ALT levels were 36. Normal is 5-30. A sick child's levels would be between 360-500. Her last check in January was 28. So they were in the normal range then, but are now up a bit as well.
The cardiologist did say that they could be elevated because of her recent ear infection but it's hard to tell. Her glucose was perfect and her heart was perfect, so he was pleased with that.
The results were then sent to our geneticist, who then relayed some concoction suggestion to nutrition. She called me with the recomendation.
The geneticist didn't leave me with a good feeling about the future of our breast feedings, but after speaking with the nutritionist, I do feel a bit more comfortable in their suggestions.
There are a few 'options' of getting MCT oil into the body for VLCADDers.
There is MCT oil, that apparently you put IN foods. There's MCT Procal- which I believe is a powdered formula, but is for children over a year old. Then there's Liquigen, which is a liquid product to add into food/drink. And lastly, Lipistart, which is a formula, that they drink. I believe this is the most common way most children get the medium chain fats needed.
The suggestion was to give Lipistart before I nurse her each time. Just an ounce or two before each nursing, would add in a lot of MCT to her diet and offer her a lot of protection. However, with the addition of foods, she will gradually nurse less, thus taking in less of the long chain fats that are in my milk. Our Cardiologist was fine with adding in MCT of some form into her baby food and continue nursing. However, genetics wanted to add the formula, making her nurse less.
After speaking with her nutritionist I expressed my desire to try the MCT in her food first. Either way they will recheck her levels in 6 weeks to see if they are going down. In 6 weeks if they are not down, I will agree to the Lipistart. But I don't want to decrease my milk supply if its not absolutely necessary.
This is such a frustrating process. I don't feel like our 3 specialist are on the same page, or even communicating. I really like the Cardiologist (who is leaving Vandy) and I like the nutritionist. I don't have an opinion just yet about Genetics. He's very 'to the point'. Which is fine, but I also need a little compassion and explanation. Our original Geneticist left Vandy so we've started over with a new one. He's probably perfectly fine, but I was used to our other doctor.
I felt a little defeated after this conversation. We had originally left the appointments feeling like we could continue on the same course as we were on, with the addition of foods to her diet, but then to have it changed, to adding in formula- nursing less. It was what I didn't want.
Perhaps it's because for 6 months she's really been no different than a 'normal' child, other than making sure she eats every 3-4 hours for the first 6 months, and now 4-5 hours.
Now, with the suggestion of adding MCT into her diet, and possibly putting her on Lipistart, I feel like she becomes one of them. I feel like it makes her have VLCADD a little more. I don't know. I have such mixed emotions. Of course, I want to do whats absolutely best for her, but I also feel like no one really knows what would happen if I just continued to nurse her, for the first year and added the MCT in her food. She's not going to nurse more now than she did when she was a newborn, so there will be a decrease in the very long chain fats that she gets. That has to work in her favor. In our favor.
This disease is so rare, and no two children are the same. And there are adults with VLCADD who didn't know they had it until later on in life, and survived without any MCT, or fasting. No, I don't want to buck the system, but there are just so many grey areas with this disease to me. Perhaps it's because I don't know enough about it, perhaps it's really because it is grey. Either way, I'm still learning.
I, by no means, know all there is to know about this disease, but it is my desire as her mother, to be her advocate. To ask all there is to ask. To understand the why behind the suggestions. To decide, ultimately, if we will follow their leading. I pray we will always make the right decisions when it comes to her health. Selfishly, I do wish to nurse her at least the first year, but if that's not what's best for her then I pray I can gracefully bow out if need be. I'm trying not to let my mind go there yet, and praying that we can continue nursing.
We should hear back from the Nutritionist in a week or so to determine which route Genetics wants to take. Either way, I'm thankful for a healthy, happy, thriving, milestone reaching, strong willed little girl.
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