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Old 01-16-2007, 02:46 AM
 
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USAmamma....Emma does not have a tube. They have decided to wait on the elemental formula...not sure why other than it tastes bad...so she may not drink it??? I may have to ask more about that. What is your daughter on?

judejude....We don't make it to the bathroom when Emma throws up either. She has bibs that have kind of a "bucket" in the bottom. She throws up in there...I just have to get to the bathroom quickly to dump it. I like the idea of keeping a yogurt container though...why didn't I think of that? Good thing this group is here!

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Old 01-16-2007, 03:02 AM
 
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judejude....We don't make it to the bathroom when Emma throws up either. She has bibs that have kind of a "bucket" in the bottom. She throws up in there...I just have to get to the bathroom quickly to dump it. I like the idea of keeping a yogurt container though...why didn't I think of that? Good thing this group is here!

Thanks All!!!
Well, I'd say you could even use something smaller than a yogurt container (I was thinking of the big ones) - maybe one of the small little sippie type cups with a lid? If she only throws up enough to fill one of those bib things and she doesn't projectile, then you could use something smaller.
I just always keep something with us - in my big 'ole purse or in her insulated snack pack we take with places.
It does come in handy because you can go dump it, rinse it out and her clothes don't get anything on them and you can just go back to what you were doing.

It feels weird sometimes. Sometimes I feel like she is bulemic (sp?) because we have all these containers everywhere - in the car, in my purses, in her bags, etc. And in the car there's no where to dump them - it is gross, but that's life for us. I'm not going to not go places because of all that. It is easier with 2 adults vs. just me though - way less stress, especially at the time of throwing up....and also just knowing someone is there to help if she does throw up.

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Old 01-16-2007, 04:07 AM
 
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USAmamma....Emma does not have a tube. They have decided to wait on the elemental formula...not sure why other than it tastes bad...so she may not drink it??? I may have to ask more about that. What is your daughter on?

judejude....We don't make it to the bathroom when Emma throws up either. She has bibs that have kind of a "bucket" in the bottom. She throws up in there...I just have to get to the bathroom quickly to dump it. I like the idea of keeping a yogurt container though...why didn't I think of that? Good thing this group is here!

Moneca....I PM'd you back
Thanks All!!!
Sorry, I can't keep us all straight on who has tubes and who doesn't. They make a new formula called Eo28 or I think it's called Eo Splash! now. It is supposed to be better tasting and it comes in a few flavors in a juice box. From what I have heard the kids seem to like it. It's made by Neocate.

Nitara just got put on the elemental formula and has lots of different kinds of samples. We are still fighting insurance for full coverage. She seems to tolerate Elecare and Neocate Jr. well. A nice MDC mom is sending me some Neocate 1+. The Jr. has more calories to boost growth in underweight kids. I think that's the main difference btwen Jr and 1+.

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Old 01-16-2007, 11:50 PM
 
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I'm taking notes. My son's only a month old, but he aspirates and has dysphagia and reflux. We're not sure why he's having problems, but I'm taking notes so I can know what to ask about in the future. Any other things you guys whish you had known early on?
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Old 01-21-2007, 04:05 AM
 
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How many of you here are "doing" WP/Nourishing Traditions/Traditional Foods type eating... or at least trying to?


I should add that most of us have "switched" to that and that I have been slowly replacing or "hiding" some of these things for my son... for example buying the free range bug eating chicken eggs to make his french toast with and frying them in CO (that took awhile to adjust to because of the smell). Trying to make what little he eats as nutrient dense as possible.

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Old 01-21-2007, 04:10 AM
 
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How many of you here are "doing" WP/Nourishing Traditions/Traditional Foods type eating... or at least trying to?
OK, are these terms that people use that have specific definitions that I am supposed to know or are you just referring to eating whole foods and organic and all natural stuff? oh, and what does WP stand for?

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Old 01-21-2007, 04:12 AM
 
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How many of you here are "doing" WP/Nourishing Traditions/Traditional Foods type eating... or at least trying to?
Not sure about the abbreviations, but I did attempt to use a blenderized formula for my dd to put through her tube. It went well until she was dx with a serious allergic condition in her esophagus. Right now she's on elemental formula. I hope to get her back to blenderized eventually.

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Old 01-21-2007, 04:26 AM
 
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I bet the WP stands for Weston Price, the dentist who has devoted himself to nutritional work - He and Sally Fallon, the author of Nourishing Traditions, believe that humans need animal fats & cholesterol in our diets, and that a lot of "health foods" are anything but. I haven't read their books, but I have a few friends who are huge fans & followers.

Around here, I'm just happy when DD eats *anything*. I dream of the day when I can follow a diet based on nutritional theories instead of one based on which foods don't make my DD gag...
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Old 01-21-2007, 06:42 AM
 
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I bet the WP stands for Weston Price, the dentist who has devoted himself to nutritional work - He and Sally Fallon, the author of Nourishing Traditions, believe that humans need animal fats & cholesterol in our diets, and that a lot of "health foods" are anything but. I haven't read their books, but I have a few friends who are huge fans & followers.
Now that you describe it, I have heard of that.

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Around here, I'm just happy when DD eats *anything*. I dream of the day when I can follow a diet based on nutritional theories instead of one based on which foods don't make my DD gag...
: I gave up on the nutritional thing years ago. Now I mostly care about caloric intake. If she eats something with good nutritional value then that is a bonus. If she keeps her food down then that is another bonus.
I'm always baffled by the people, with kids with autism and other things, who put their kids on these specific diets. I just don't get how they get their kids to go along with that stuff. It would be hard with an average kid, let alone a kid who already has sensory issues, etc.

As dd got older I realxed more and more about what I'd allow her to eat and I actually found that the more processed the food the more likely she was to eat it. She also ate more in quantity. If it's the difference between her not eating at all (and us having to formula feed her through her g-tube) or her eating wonder bread with butter? well, I will take the wonder bread. Of course if I think about it enough it makes me kind of sad, but we as parents of kids with special needs, learned early on that we had to be flexible and that we had to let go of our expectations.
If all she wants to eat is KFC mashed potatoes and macaroni and cheese and McDonalds chocolate shakes - well, I just have to try not to think about the nutrition and just focus on the positive, which is that she ate better today, regardless of what it was.

OK, sorry to go on and on

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Old 01-21-2007, 07:13 AM - Thread Starter
 
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We try to do some WP stuff. As much as we can. But like rebx, I'm just happy if my son will eat anything.

I do soak oatmeal overnight for them, it's just that I soak quick oats. He won't eat regular oatmeal, and steel cut oats are out of the question. So I do the best I can under the circumstances.

I said before that I used to consider myself a foodie but much of that has gone out the window. I do cook healthy for my dh and I, and my younger son will eat almost anything, but day after day struggle with food with my older son has taken a lot of joy of food from me.
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Old 01-21-2007, 02:24 PM
 
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I'm like most of the others here... I cook healthy for my DP and I, but I'm happy if my son eats anything other than PediaSure.

It makes me sad, because most of the things he will eat are so processed. I was thrilled to find last week that he likes Wheat Thins, that's one of the healthier foods he'll eat. I nearly jumped for joy yesterday because he ate TWO bananas in a row, and about 10 wheat thins. It was amazing, and he's been days with nothing but PediaSure and water.

He likes to eat fish sticks, the noodles out of chicken voila, mac n cheese and that's about it. He will eat carrot sticks and bananas.

So while DP and I eat healthy, whole foods, I am just happy if DS eats, period.

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Old 01-21-2007, 02:53 PM
 
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Around here, I'm just happy when DD eats *anything*. I dream of the day when I can follow a diet based on nutritional theories instead of one based on which foods don't make my DD gag...
You said this so beautifully. I have said before, when I first got pregnant I imagined myself eating brown rice and kale and then prancing off to yoga and dance classes. Enter severe hyperemesis that lasted the entire pregnancy. I was happy if I could keep down water on some days. I felt so much pressure to eat healthy food, internally and externally. So I feel for my daughter, who tries so hard to eat healthy food, and then spits it out.:
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Old 01-21-2007, 03:45 PM
 
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Dh and I have been using a Nourishing Traditions type diet (check out www.westonaprice.org if you want more info) for about 4 years now. So far, ds (21 months) still won't eat any solid foods, so I figure the nutrient dense foods in my diet help him since he is exclusively breastfed. I plan to stick with more nutrient dense foods for ds if possible, to make the most of what gets in him (hopefully that will work!). For now, I can't get food near his mouth, and he isn't interested in feeding himself. My parents say to try something that tastes good, like applesauce, but I can't even get him to taste anything, so that doesn't seem to matter. Has anyone tried or heard of any alternative therapies for refusal to eat (besides speech or occupational therapists)?
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Old 01-21-2007, 07:50 PM
 
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Has anyone tried or heard of any alternative therapies for refusal to eat (besides speech or occupational therapists)?
Well, since it sounds like either a sensory issue or a developmental delay?, or both? I can't think of anything that would help besides working on sensory stuff. Of course you can work on sensory stuff in a number of ways, you can be as agressive...or not at all agressive, as you want.

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Old 01-22-2007, 01:22 AM
 
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How many of you here are "doing" WP/Nourishing Traditions/Traditional Foods type eating... or at least trying to?


I should add that most of us have "switched" to that and that I have been slowly replacing or "hiding" some of these things for my son... for example buying the free range bug eating chicken eggs to make his french toast with and frying them in CO (that took awhile to adjust to because of the smell). Trying to make what little he eats as nutrient dense as possible.
I thought I recognized your name - it was from the traditional foods forum. Yes, we eat a traditional foods diet. That is where all our money goes and I'm blessed to buy most of it directly from local farmers so I save a bunch of money. Dd's main source of nutrition has been the 24 hour raw yoghurt with some of Dr. Rons's powdered whole foods supplements mixed in for over a year. She also eats the raw cheese, sprouted or traditionally fermented breads/rice , raw butter, and pastured meats and eggs along with some veggies. Oh, I almost forgot that she loves the chicken broth. Many days it's just been the chicken broth and yoghurt that stays down. You do what you can and chuck the rest of your ideals out the window sometimes.
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Old 01-22-2007, 04:17 PM
 
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update and a question...

Linden is scheduled to go in tomorrow to do a bronchoscopy to see if there's a structural reason for ds's aspiration and dysphagia. Since he's so young and already has issues, they'll keep him over night.

So last night he came down with a cold. I talked to the surgeon this morning and they said we'd go ahead as planned and as long as his chest was clear they'll still do the proceedure. So pray for a clear chest please!

Now on to the questions...

Every time he would cough stuff up last night, he'd throw up or dry heave. He gags and heaves a lot anyway, but never brings anything up. I thought either coughing triggered his gag, or that he couldn't deal with the consistancy of the mucous. Do any of you have kids with this problem? is it the coughing or the consitancy of snot that gets them?

Secondly, I know that they aren't too alarmed when what he's aspirating is just breastmilk, but what about vomit or snot? Do I really have to worry about pneumonia right now?

I just wish that all this could have waited till after the scope to happen. Or not happen at all. I'm really starting to get nervous about the scope. I've stopped reading about the stuff they're looking for, cause many of them have significant mortality rates, and I just can't think about that right now. Most of the causes of death were from pneumonia, so I'm totally freaked about it. So I now know enough to follow what the dr is talking about, but I'm not going to read anymore till I know what we're dealing with. I just hope he's okay enough to go ahead with the scope, cause I don't think I can handle worrying about it much longer.

I'll post back as soon as I know what's going on and have access to a computer.
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Old 01-22-2007, 04:27 PM
 
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I hope that all goes well with the scope. I'm curious about them telling you that breastmilk was OK to aspirate. We have been told any fluid is damaging...even water...because the bacteria from the mouth can get into the lungs and form an infection. Have they talked about a nissen fundoplication? Don't worry too much about the pneumonia/infant mortality rate (I know that is easier said than done, but you have doctors on top of it...and there are very strong antibiotics that can help. I'll be thinking about you today. We went through all of this back in April. Please let us know how it goes.
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Old 01-22-2007, 05:05 PM
 
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My dd vomits easily with a bad cough and I'm sure thick mucous would cause the same reaction for one with a sensitive gag. When they do the bronchoscopy they'll be able to do some suctioning of pleural fluids through the suction device that is part of the bronchoscope. If there is fluid in the avioli at the base of the lungs Where gravity takes it) they won't be able to get that with the scope. They will be able to take culture samples of the fluid to see if it is growing any bugs. Try not to worry over a diagnosis you don't yet have . I did that and it was a total waste since all dd's gi biopsies and other testing came up negative.
We used to do bronchoscopies bedside in the ICU so feel free to throw up any more questions. Even on adults the scope took 10 minutes tops and usually less then 5 - these were on patients who already had breathing tubes in so there was less preparation time.

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update and a question...

Linden is scheduled to go in tomorrow to do a bronchoscopy to see if there's a structural reason for ds's aspiration and dysphagia. Since he's so young and already has issues, they'll keep him over night.

So last night he came down with a cold. I talked to the surgeon this morning and they said we'd go ahead as planned and as long as his chest was clear they'll still do the proceedure. So pray for a clear chest please!

Now on to the questions...

Every time he would cough stuff up last night, he'd throw up or dry heave. He gags and heaves a lot anyway, but never brings anything up. I thought either coughing triggered his gag, or that he couldn't deal with the consistancy of the mucous. Do any of you have kids with this problem? is it the coughing or the consitancy of snot that gets them?

Secondly, I know that they aren't too alarmed when what he's aspirating is just breastmilk, but what about vomit or snot? Do I really have to worry about pneumonia right now?

I just wish that all this could have waited till after the scope to happen. Or not happen at all. I'm really starting to get nervous about the scope. I've stopped reading about the stuff they're looking for, cause many of them have significant mortality rates, and I just can't think about that right now. Most of the causes of death were from pneumonia, so I'm totally freaked about it. So I now know enough to follow what the dr is talking about, but I'm not going to read anymore till I know what we're dealing with. I just hope he's okay enough to go ahead with the scope, cause I don't think I can handle worrying about it much longer.

I'll post back as soon as I know what's going on and have access to a computer.
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Old 01-22-2007, 05:25 PM
 
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they said it would take about 45 minutes. They are really closely examining the surface of the whole trachea, larynx, etc. because they think the most likely thing is a hemangioma on something. He has a hemangioma on both eyelids, right ear, and back of the head. So they are looking very closely for discolorations. Luckily on his face they are just the superficial kind... so as of yet, no bulging or anything.

I just don't know what would be worse, if they find something or if they don't. At least if they find something, we would know where to go next and all that, and it might be fixable. On the other hand, it could be very serious. But if they don't find anything, that will just mean we'll be dealing with this for a loooong time and will still keep looking (which means more tests, I hate tests). So what's worse?

As for the aspirating breast milk, the swallow study showed that he had significant aspiration (I think 25% of the time) and laryngeal penetration with almost each swallow. So he definately has a big issue with aspiration, plus dysphagia on top of that. When I talked to the otolaryngologist about this, he said that breastmilk is easily absorbed, so it doesn't just sit there. Plus it's less likely to grow stuff than formula. Not that it won't grow stuff, just that he's not as worried as he would if we gave him water or formula. I don't know if that's correct or not... this is the first time I've ever really even paid attention to swallowing. But this guy is one of the top pediatric otolaryngologists in the south. He's at vanderbilt childrens hospital (which is a fantastic hospital, they've been so great to us!). Not that that nessicarily makes him a great dr, but he does have a good reputation, so I'm more likely to trust what he says. And now I'm babbeling. I'm just still nervous and stuck with two grouchy sick kids, so I'm haunting the computer.
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