Buttered toast

Patrick and I have eaten breakfast together for the past two days. The same meal. The same food. Buttered toast. And I’m very excited.

Why? It all has to do with essential fatty acids.

Now you’re asking what essential fatty acids are, and what any of this has to do with toast. Let me back up a little bit.

One of the elements of TPN is a substance called lipids. We call the lipids fondly Patrick’s cheeseburger. Basically, they’re fat. That tippy top part of the food pyramid. And we all need just a little bit of fats in our diet. They’re a source of calories, and they serve other functions in the body, too.

Unfortunately, when lipids are given intravenously, the liver is responsible for breaking them down. This is one of the primary causes of TPN-associated liver damage.

We’ve been fortunate that Patrick’s liver health has been well managed, but every once in a while, it still gets inflamed from the extra work it’s doing. When this happens, the doctors will sometimes give his liver a rest by taking the lipids out of his TPN.

However, like I said, our bodies need fats. So, you can only safely take away lipids for a little while you start to have deficiencies. And so, after a few months without lipids, they start to do a blood tests to measure the fatty acids in the body.

We did that test a couple months ago. The results were surprising. Across the board, the test shows deficiencies. However, not all of the levels were low. In fact, some were high, evidence that Patrick has probably been absorbing some of the fish oil supplements that we’ve been giving him. And the ratio that usually reveals a need to give lipids back, well it was normal. But, being a ratio, could you be deficient and low?

So – when we saw Patrick’s GI and dietician last week, I started asking questions about what the blood tests meant. And, as Dr. Jackson loves to teach, he pulled out a piece of paper and gave me a little science lesson. Warning: Science content.

He started by teaching me that there are two essential types of fat that our bodies cannot produce for themselves, Omega 3’s and Omega 6’s. The lesson then turned to chemistry. I learned that the terms Omega-3 and Omega-6 refer to the molecture structure of the fats. And that as the body breaks down those fats, it converts them into enzymes. So Patrick’s levels of the fats were low, but the enzymes were high.

In the end, the lesson convinced him that Patrick probably needed a little more lipids. So, we added them back into the TPN, but just twice a week.

I still had a lot of questions about how a fatty acid deficiency affected the body, besides it being a bit harder to gain weight. And I was still floored by the fact that Patrick showed evidence of absorbing anything he ate.

Thankfully, the very next day there was a webinar being put on by ThriveRX, an national infusion pharmacy, about that very subject. And I was available to tune in.

And I got a few answers. Learning the symptoms and consequences of fatty acid deficiencies was interesting and put my mind at ease. There are, in fact, consequences.. but Patrick wasn’t really showing symptoms.

I also learned a LOT about how to add Omega-3’s and Omega-6’s to diet.. and the importance of getting both. Patrick’s dietician has been telling me to try feeding him more fats, but I needed to know the right kinds of fats. The webinar gave me a list. Fish, but not just any fish. Oil, but preferably oils that start with “S” (sunflower, safflower, soy). And then a few things that allergies might not allow: mayonnaise (eggs/milk), salad dressing (milk), and margarine (yup, milk.)

But these last 3 are the way that most of us actually consume these essential fatty acids. So, when they opened things up for questions, I asked if there were options for a child with allergies.

And I learned that a very, very small number of tub margarines don’t contain any milk products.  I tried margarine with Patrick when we first discovered the milk allergy, but every brand I tried still resulted in the same hives in and around his mouth. Turns out they all got their flavor from whey, buttermilk, or other traces of milk products. I finally just gave up, which meant giving up on a lot of foods that are better softened with margarine.

But, armed with this new information, I headed back to the store and found that Smart Balance makes a margarine with flax. It’s all those magic “S” oils. No milk. It’s even labeled “a good source of Omega-3’s.”

And, for the first time since last summer, I’ve been able to add a buttery flavor to vegetables, breads, potatoes and more for Patrick. And, not only does he get to enjoy the taste, but there is a small chance that he’ll actually absorb a little bit of it, which would help him grow and help decrease his needs for lipids which would, in turn, help protect his liver.

For perhaps the first time since he was a newborn, I have hope that feeding Patrick will do him some kind of nutritional good.

And it’s a food that I can share with him. I make a piece of toast and we eat it together. Patrick thinks it’s remarkably fun to both take a bit at the same time. I’m sharing with him and don’t feel like I’m cheating or taking a risk.

I can’t wait to enter the realm of buttering our eggless/milkless pancakes to see if it will help him want to eat them. Or to cook hash browns. Or to try adding a little buttery flavor to my homemade SBS friendly baby foods.

I feel strangely empowered.. by buttered toast.