Wednesday, March 09, 2011

Trouble for Omegaven in Maryland

Gib just learned that there is a bill before the Maryland legislature that will prohibit the manufacture, distribution or sale of any products made from Atlantic Menhaden, the tiny smelly fish that we have been told is the primary source for Omegaven's omega-3 oils. HB1142, as it is known, is scheduled for a hearing on March 16. It is very vague but could mean the end of omega-3 supplements, medications, possible research in Maryland unless they can be shown to be derived from non-Menhaden sources.

We are not fans of the commercial menhaden industry and believe their fishing should come under more stringent control to look out for the oceans and the Chesapeake Bay, but this approach could have real consequences for people, both old and young in Maryland and beyond.

If you would like to have your opinion heard on this, especially if you live in Maryland, letters can be addressed to:

Delegate Maggie McIntosh, Chair
Delegate James E. Malone Jr., Vice Chair

Room 250, House Office Building, Annapolis, MD 21401-1991

Wednesday, March 02, 2011

Not Heavy Enough

We had clinic today with Dr. Lo's TPN clinic. Ellie had only gained just a tiny bit and had grown an inch since last Nov. The problem is in December she got sick, got admitted, had really bad SBBO and lost a ton of weight. So the fact that she is up from November's weight is good news to us. But when they did the body mass evaluation her numbers were down. So she is growing but needs more calories. They want us to get those calories enterally not through more TPN. So we are going to push more elecare by mouth and turn up the overnight enteral pump. We are also going to try going up in calories per ounce of formula.

They also talked about prepping to get her off of TPN/hydration fluids. To do this we are decreasing the amount of every overnight hydration bag from 1200mls to 1000mls. We have clinic again in 2 weeks and if she is doing well we will decrease more, if not then we go back up. First they said they wanted to leave every night at 1200mls and then do one night at 600mls. The idea of that made me gulp. So we compromised with a decrease to 1000mls.

All in all, they were happy with how she was doing, just not as impressed as I was. So now we try new stuff and hope for a big weight gain over the next few weeks. We're in for big fun now!!!

Tuesday, March 01, 2011

Think Heavy & Remembering the Beginning.

Ellie has been doing really well lately. She is eating like a horse and we have been able to keep better control over her bouts of overgrowth. From what we learned in the last Maximize Health webinar, protein is key for Ellie. Protein is digested in your Jejunum and the only small bowel that Ellie has is her Jejunum. So we have kicked it up a notch in the protein department. We have started offering, low fat ground turkey, low fat ground beef, poached chicken and some vegetarian options. Eggs apparently at a perfect protein and Ellie is loving her eggs right now. She has been very happy with our diet modifications.

So, we are keeping our fingers crossed that at our TPN clinic tomorrow we will hear good news. We always tell Ellie to think heavy thoughts before she steps on the scale at clinic. And tomorrow she better be thinking HEAVY. We are only on 3 nights of TPN and we want OFFFFFFFFFFFFFF!

Ellie has already come off of TPN once. When she was 2 and half years old she was off for 6 months. Then we did the reconnection surgery and now almost 2 years later we are hoping to get off again. Keep your fingers crossed for us!!

Getting this close to getting off of TPN has made us think about when we went on. I have also been talking to some parents that are right at the beginning of this roller coaster ride. I have forgotten how scary and uncertain things were after Ellie was born. William has been very easy and it has only pointed out to us how hard things really were. When Ellie was born there was very little information out there about Short Bowel, TPN or Omegaven. Many times we felt like we were flying blind. We did get hope when Ellie was a month old, a family that used to live in AZ send us a picture of their son that was short bowel. He looked fantastic. It made us realize that how things were now was not how they were going to end up.

Now there are many resources out there for parents and adults with short bowel. Over the next few weeks I am going to update the links we post on this blog to make sure that all the resources are listed. I also want to update our blog list. Most of the kidos listed are around Ellie's age, give or take a year. I would love to add some blogs/caringbridge sites for more kids and even some for adults. If you have any suggestions for resources or would like your blog added please either leave a comment on here or email me

The next topic for Maximize Health is fats in the short bowel diet and how to avoid fatty acid deficiency. This will be very important if we get off of TPN!!