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High calorie/low protein foods...

post #1 of 12
Thread Starter 
we blend Linden's food for his tube feedings. I am having a hard time meeting the caloric need without totally overdoing the protein. So what are high calorie low protein foods?
post #2 of 12
Umh, sugar? I can't think of too many things right off the top of my head other than oils, and maybe a specialized formula. DD gets sugar plus Elecare only so we're not much help. Avocado?
post #3 of 12
I would suggest joining the blended diet on Yahoo.
post #4 of 12
Wow that's a tough one. I bet Rachelle would have some suggestions, at least for low fat, but that's not exactly what you're looking for....

How about complex carb foods? They can be really calorie dense. I second the avocado suggestion, and would add maybe banana and yams, but that's lots of sugars as well.
post #5 of 12
Well, your most calorie dense food is fat. You have straight up fats (like adding oils). Other fats would include stuff like olives and then you have avocado which does have some protein but also has lots of good nutrients along with fat.

Here's the thing. Is is possible that Linden might have something mitochondrial secondary or primary? I don't know where the thinking is on that now but mito kids have issues metabolizing fat. I went high fat with Andrew and it was a disaster for him health wise and I've since met other (undiagnosed at the time) mito kids with similar results..some a lot worse than us.

At this time Andrew is low fat (was 15 to 20% and they recently bumped him to 30 though I'm not there yet) and a bit above the minimum needs for protein. We do lots and lots of carbs. The dietitian did push sugary stuff but the empty carb thing bugs me a lot. You're not dealing with protein though if you do that. So if you want you might look into agave nectar--it's a good carb for diabetics/blood sugar issues and it's not extremely thick like some other things.

But you can hit his calorie levels with carbs (brown rice and the like blends well), some protein (what are you using), and say 30% of calories from fat. MCT oil might be safer for some mito kids (but terrible for medium chain fatty acid kids). Coconut isn't straight medium chain fat but has a higher percent than other fats. Andrew does horribly with long and very long-which is all your vegetable and fish and the like.

In my experience when Andrew was eating calories he couldn't metabolize he wasn't able to use them to gain weight grow very well.
post #6 of 12
Thread Starter 
well he was on formula but wasn't doing well on it. he was 23 lb 8 oz in the beginning of dec. and had one illness and lost a lot and just stuck at 22 lbs 10 oz. He just wasn't gaining anything back, so we changed back to the blended diet and were closely followed, so I had to clearly write everything down and man, a bit overboard on the protein.
Today I went heavy on the carbs and it helped a lot!!! It halved what he was getting!
yeh, rachelle, something about food affects him, but I can't figure out what aspect it is. He does a lot better on the blended diet normally. I can't tell right now, cause he's doing so well now that he's on the o2 most of the time. I have a couple of other questions about mito if you have a second (or ten, lol)...

He has a rather high heart rate. It's normally over 130, with movement his in the upper 140's or 150's, if it's later in the day (afternoon is always worse for him) it's in the 160's to 180's with movement or if he's even minimally upset. Is this at all common with mito? He's getting an ECHO on friday (but the cardiologists in our town suck and the equipment is positively ancient, so it'll all probably be repeated at vanderbilt).

secondly, daily he randomly drops his sats. usually when he's tired. but I don't know that it's constant enough for the o2 to have made as big a difference as it has. But the difference is absolutely amazing. We're not totally sure why his sats drop so much either. So have you ever heard of a kid with mito that responds so well to o2? I don't know how many desats it takes to developmentally delay them, but he's made so much progress since we started the 24/7 o2. But it's just weird though.
post #7 of 12
I'm more than happy to answer any questions I can. As I know you know mito presents very differently/in a wide range of ways.

So take what I'm saying for what it's worth...which is what I do know is specific to my son and his presentation is different. I'm not sure about heart rate though I've certainly read about heart rate fluctation/regulation problems in people's stories of their kids. Andrew's geneticist and neurologist who specializes in mito were both concerned about Andrew's heart and oxygen levels. The first additional study ordered was an echo. The geneticist mentioned that at some point he expected us to have some measure of respiratory failure. I've read about using O2 for mito patients during exertion I know. And I believe that cardiomyopathy can cause a person to benefit from O2. So it seems like an echo would be good. There are other metabolic things, like FOD's, that can affect the heart. I'm sure though Linden has had a lot of work up in that area already and I would think most outside of mito (like CPT I and II and the FOD's) have been looked at through skin or he doesn't fit the profile otherwise. That's why I phrased it the way I did; I wasn't sure what's been ruled out. I'm guessing they've not done a muscle biopsy?
post #8 of 12
Thread Starter 
we've done no biopsies (except stomach and intestine... no muscle or skin), no blood work except genetic testing (wich frustrates the snot out of me, you'd think with all the problems he's had his whole life someone would have done some kind or blood testing), no urine testing, nada. We're going for an echo tomorrow cause our pulm was concerned with his lung/heart function. His heart rate fluctuates so wildly. yesterday he was going from a brady (43 bpm) to somewhat tachy (153 bpm). it was nuts and happened a few times. my parents are friends with the wife of the head of peds cardiology at vanderbilt (which is where we go for a lot of stuff, but our pulm is in our town so that in case of emergency there's someone here familliar with Linden's case) and he said that we're going to have to repeat it at vandy anyway, but I'm hoping that at least this echo would rule out any immediate problems.
We're doing all the blood and urine testing next thursday when we go down to nashville. I think that will be repeated every time we go down there (every three months) till they're satisfied. the muscle biopsy will be done whenever he's stable enough to be put under for something that minor (which we've been told could be years).
post #9 of 12
Oh gosh. Are you saying he's not had any metabolic work up at all? I just assumed I guess that they had done that. Ok.

Can you insist on skin biopsy to look for FODs (can't remember lab), CPT I and II (sent to CHOP Phillie is the lab), and mitochondrial disorder (sent to Cleveland Clinic)? I know CPT's and Mito particularly are very muscular in symptoms. We're not doing anesthesia with Andrew either so no muscle to confirm. But skin clearly showed he can't process fat--narrowed his issue to primary, or secondary to CPT I, mitochondrial disorder. CPT I has been ruled out as much as technology allows with skin. And most important we know how to treat. All that with just his skin.
post #10 of 12
Thread Starter 
what is CPT and FOD?
post #11 of 12

I really think they would already know if there was a fatty acid disorder and I'm not sure his symptoms correlate with that; no blood sugar issues, right? It's muscles, right? http://www.fodsupport.org/fods_defined.htm#symptoms Those are the Very long chain fatty acid disorders, medium chain etc.

CPT is carnitine palmitoyltranserase I and II. Here's a blurb on CPTII. I'm thinking he doesn't match there either. http://ghr.nlm.nih.gov/condition=car...seiideficiency If you look up CPT I you'll see a lot about liver. I know that they don't know a lot about CPT I and there are forms that they just don't have the research on or that's what I've been told. My understanding is there is much more they suspect and so it's still in the running with Andrew slightly, whose liver is fine. But it affects muscles. That's why I mentioned it.

What I would want to know is if Linden has any mitochondrial disorder markers. Have they mentioned looking at mitochondrial at all to you? That one seems to be possible given his issues but maybe they know something that I don't that makes them think otherwise.
post #12 of 12
Thread Starter 
We're going back to him on Thursday and he called a month or so ago and said we're going ahead with a full metabolic work up and eventually a muscle biopsy. I think he's just been checking things off his list, one by one and this is where we've ended up. he said the muscle biopsy will also rule out some of the rare muscular dystrophies. But I'm very interested to see what he says when we go on Thursday after all we've learned about his current resp status and his tachycardia.

I always feel like I don't know the right questions to ask going in to the appt. any you can think of asking?
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