November 2008
When we were told how to make the Elixir mixture the dietitian mentioned that the MCT oil breaks down plastic so we would need to dispose of the plastic syringes after a while of using them to squirt the MCT oil into the Elixir mixture. I asked about what type of container we needed to store the mixture in during the 24 hours it is allowed to sit in the refrigerator. She said for that amount of time a plastic container would be fine. So for about three months we were storing the prepared elixir in plastic containers in the fridge and then using plastic bottles to feed Sarah. From our understanding, according to the dietitian all of this was allowable.
At a certain point people on the FOD online support group were discussing thermoses and what kinds of liquid with MCT oil could be stored in for their child to take to school. I commented about what our dietitian had told us. Someone politely pointed out that because the MCT oil can break down plastic that they didn't think it was safe to store it in plastic at all. This got me questioning whether the dietitian had instructed us correctly.
I decided to contact Nestle (the maker of our MCT oil) directly and ask them what was acceptable. This was their response:
"Lisa, Thank you for your e-mail. The MCT® Oil and formula mixture needs to be stored in glass and fed with non plastic utensils such as a glass bottle. In regards to storing the product in a thermos check with the manufacturer of the thermos as some are stainless steel on the outside but have a different material on the inside. The MCT® Oil and formula mixture needs to be held under refrigeration in accordance with the time limit (24 hrs) as specified by your dietitian. Best wishes from your friends at Nestlé Healthcare Nutrition."
My reaction that I posted on the support group on November 10th, 2008: "Now I'm off to the store to buy glass bottles and containers. I wish I would have clarified this 3 months ago. I'm not even going dwell on the possible damage done to my daughter. And I forgive the dietitian for telling me the wrong information but I think I will call and nicely inform her that, according to the manufacturer, she is telling patients the wrong information."
We ended up needing to stop using all the plastic bottles we had purchased (which were the same Medela [read as "not cheap"] bottles used with the breast pump). Luckily the only glass bottle I could find without plastic parts inside the bottle were Evenflo Classic and you could get a 3 pack for just over $5. If only we had known . . . ah, the money we could have saved [sigh].
Because of our insurance switch, we no longer had the same dietitian. This experience helped to remind me that medical professionals are just people and they don't have all the answers. It's important to check information with the manufacturers. If I have any questions now about things I am giving to Sarah, I call the manufacturers.
Showing posts with label MCT oil. Show all posts
Showing posts with label MCT oil. Show all posts
Monday, May 25, 2009
Wednesday, March 18, 2009
The Elixir
August, 2008
At our first appointment at the metabolic clinic, the dietitian gave me a recipe for the mixture we were to feed Sarah so she could be on a low-fat diet. The mixture wasn't a formula, so we couldn't call it formula. We called in a few things that first week but we finally ended up calling it The Elixir.
The Elixir Recipe:
Breastmilk - 150 ml
Polycose - 50 gm
ProViMin - 10 gm (requires a prescription; she said that some parents find making it a paste with a small amount of water helped it mix better - and she gestured with her hand like making it a paste in the palm of your hand)
MCT Oil - 7 ml (breaks down plastic)
add water to make a total of 16 ounces (she said boil tap water to purify it)
Along with the recipe we were provided with printouts of where, online, we could purchase the needed elements. The dietitian provided us with a scale, 4 or 5 plastic syringes, and a triangular shaped plastic beaker. We were told that the MCT oil breaks down plastic so we would need to throw a syringe away when we noticed the numbers wearing off, and yet that it was OK to store the elixir in plastic containers in the refrigerator for up to 24 hours (we later found out this was not true).
I left our appointment thinking that if I didn't care for my baby correctly, as specified, she could die or have a toxic build-up of fat in her cells. This created in me an urgency to try to purchase and receive these elements and all that was needed as quickly as possible.
It was difficult to not be anxious during the 4-5 days while waiting for all the stuff to arrive at our house. I would try to wake Sarah every 3 hours to feed her but many times she just wanted to sleep and was difficult to get to feed. I would get stressed out because she wasn't eating and maybe she was lethargic but it just seemed to me like she was normal baby tired. I didn't know how to tell the difference. Not knowing, stressed me out more.
When the elements finally did arrive, I had to start pumping my breast milk so it could be added to the mixture. Luckily, I was overflowing with breast milk so expressing my milk wasn't difficult.
The first time Jonathan and I tried to make the elixir, it ended with me crying because the elixir was so bubbly and clumpy it didn't seem like a mixture and Jonathan angry that the dietitian didn't know what she was talking about because her instructions seemed impossible. Making the ProViMin into a paste in your hand and transferring it to the mixing container was impossible. The triangular beaker was difficult to whisk in because of the corners. The more you whisked the mixture, the more bubbly it became. All this topped with exhaustion and thinking our daughter could die if we didn't get this right, made our first experience disappointing.
Jonathan was terrific and pressed on to try to figure out a solution so that the elixir seemed edible, well, drinkable. Luckily the nipple of the bottles prevented big chunks to get through so Sarah never choked on the elixir. There did seem to be a sludge left at the bottom of the bottle after Sarah had finished eating. The elixir also smelt bad and caused even worse smelling spit-up.
Secret to making the elixir:
It took us about three months until we figured out that if you mixed the dry Polycose powder and the dry ProViMin in the mixing container before adding the liquid, the mixture was much less clumpy. When liquid was added, it helped to add just a small amount at first and make the Polycose/ProViMin mixture into a paste in the mixing container before adding the rest of the liquid.
At our first appointment at the metabolic clinic, the dietitian gave me a recipe for the mixture we were to feed Sarah so she could be on a low-fat diet. The mixture wasn't a formula, so we couldn't call it formula. We called in a few things that first week but we finally ended up calling it The Elixir.
The Elixir Recipe:
Breastmilk - 150 ml
Polycose - 50 gm
ProViMin - 10 gm (requires a prescription; she said that some parents find making it a paste with a small amount of water helped it mix better - and she gestured with her hand like making it a paste in the palm of your hand)
MCT Oil - 7 ml (breaks down plastic)
add water to make a total of 16 ounces (she said boil tap water to purify it)
Along with the recipe we were provided with printouts of where, online, we could purchase the needed elements. The dietitian provided us with a scale, 4 or 5 plastic syringes, and a triangular shaped plastic beaker. We were told that the MCT oil breaks down plastic so we would need to throw a syringe away when we noticed the numbers wearing off, and yet that it was OK to store the elixir in plastic containers in the refrigerator for up to 24 hours (we later found out this was not true).
I left our appointment thinking that if I didn't care for my baby correctly, as specified, she could die or have a toxic build-up of fat in her cells. This created in me an urgency to try to purchase and receive these elements and all that was needed as quickly as possible.
It was difficult to not be anxious during the 4-5 days while waiting for all the stuff to arrive at our house. I would try to wake Sarah every 3 hours to feed her but many times she just wanted to sleep and was difficult to get to feed. I would get stressed out because she wasn't eating and maybe she was lethargic but it just seemed to me like she was normal baby tired. I didn't know how to tell the difference. Not knowing, stressed me out more.
When the elements finally did arrive, I had to start pumping my breast milk so it could be added to the mixture. Luckily, I was overflowing with breast milk so expressing my milk wasn't difficult.
The first time Jonathan and I tried to make the elixir, it ended with me crying because the elixir was so bubbly and clumpy it didn't seem like a mixture and Jonathan angry that the dietitian didn't know what she was talking about because her instructions seemed impossible. Making the ProViMin into a paste in your hand and transferring it to the mixing container was impossible. The triangular beaker was difficult to whisk in because of the corners. The more you whisked the mixture, the more bubbly it became. All this topped with exhaustion and thinking our daughter could die if we didn't get this right, made our first experience disappointing.
Jonathan was terrific and pressed on to try to figure out a solution so that the elixir seemed edible, well, drinkable. Luckily the nipple of the bottles prevented big chunks to get through so Sarah never choked on the elixir. There did seem to be a sludge left at the bottom of the bottle after Sarah had finished eating. The elixir also smelt bad and caused even worse smelling spit-up.
Secret to making the elixir:
It took us about three months until we figured out that if you mixed the dry Polycose powder and the dry ProViMin in the mixing container before adding the liquid, the mixture was much less clumpy. When liquid was added, it helped to add just a small amount at first and make the Polycose/ProViMin mixture into a paste in the mixing container before adding the rest of the liquid.
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