A Very Long Post About Fat

Some time ago, I wrote a post about the nutrition the boys get (yes, I’m talking about nutrition again; you can’t say that I didn’t warn you). In the post I suggested that you Google Omegaven if you wanted a bit more information. I did that because I didn’t feel I had the knowledge to write about it but the time has come to give you my understanding of it so that I can go on to explain the issue we are facing. I got this understanding from Dr Gut Guru (and from the internet after talking to him and feeling that I needed more of an understanding at my own pace).

Part of the nutrition that the boys need is an intravenous fat emulsion (i.e. lipids) as a concentrated source of calories. In the US, lipids are made from soybean oil. It is believed that the fatty acids in the soybean oil contribute to TPN associated cholestasis (or liver disease associated with getting nutrition intra-venously). Both boys have had this liver issue. Omegaven is fish oil. The fatty acids in the fish oil are shown to undo the damage that the soyabean oil did. There's lots of evidence of this and Charlie represents more data. His bilirubin levels indicated cholestasis back in December and now he is totally fine.

I hope you are still with me. I don't want these posts to be totally dull. That said, one of the purposes of the posts is a journal and this stuff is a really important part of their story.

So, why is it that, if the fish oil lipids don't cause liver problems and, in fact, cure liver problems, do we use soyabean oils? The answer is the Federal Drug Administration (FDA). The FDA have not approved Omegaven. Omegaven can only be prescribed in the US via FDA compassionate approval if the patient meets the criteria AND if the hospital is approved. Fortunately for Charlie and Henry, TCH has the approval. I hesitate to say "fortunately" regarding meeting the criteria because that is, basically, saying, "fortunately they are sick enough".

OK. Thanks to those of you that have stuck with me. Summary - Charlie and Henry are on Omegaven, which is good for them, even though it is not FDA approved.

Charlie isn't growing at the rate we would like. To help, we would like to give him more calories. We want to give him these calories in as concentrated a form as we can because if we give him too much fluid, he can't process it and he retains it and this isn't good and may even affect his lungs. So, how do we give Charlie more calories in a concentrated form? More lipids. More lipids = more Omegaven, right? Wrong. Charlie is already at the maximum allowed under the conditions of the FDA approval. That is the issue we are facing.

The solution is to bring back the soyabean oil. Yes, Charlie is going to be given the soyabean oil that gave him liver disease. Fortunately, he will get it AND the fish oil that cures it. Simultaneously. Got it? Make sense?

Good.

Now here's the final kicker on this. The insurance companies will approve Intralipids or Omegaven. They will not approve both. The best analogy I can come up with is someone getting aspirin and ibuprofen for a headache - they want you to pick one. As upsetting as this is, we are being assured that the hospital will work round it - probably by eating the cost of one of them. We'll know for sure tomorrow (Friday). In case you are wondering, we can't, apparently, even pay for it ourselves because the hospital isn't allowed to charge for two, regardless of willingness to pay.

In other Thursday news, I saw Henry today. I saw him with his hands on his CPAP tubes and crying. It’s actually quite cute – you’re not left puzzling over what the baby is crying about. It’s like if you gave him a pen and paper he would write “get this thing off of me”. A little later I was looking at him again and there he was with the CPAP pulled out of his nose. Nobody had noticed because there was no drop in his O2 saturation, so no alarm. Yep, Henry can breathe on his own. He is still on the CPAP for now but I saw it with my own eyes. Henry can breathe on his own.

Finally, Charlie had the follow up eye exam today and it was stable. This surprised the eye doctor. He is testing him again on Monday.

Here he is, wondering what all the fuss is about;

(D)