Weaning from g-tube

[aligreat]

I was just feeding Cassia and thinking about how far she has come in just the last few months. She started seeing her new feeding therapist just this last summer, and she is already taking up to 40% of her calories by mouth.

I just wanted to share with you some of the info that her OT shared with me about why children are unsuccessful at getting off of their g-tubes. The main reason is that they don't take in enough calories by mouth. If you look at most baby foods they don't have enough calories per ounce to replace the formula given through the g-tube. Cassia was placed on PediaSure when she turned 1, and it has 30 calories per ounce. When I feed her an ounce orally, I deduct it from her tube feed, but it has to be high enough in calories or her GI doc will say she is failing at eating orally because of weight loss. Gogurt has 35 calories per ounce. Gerber prunes are 27 calories per ounce (in case the yogurt tends to constipate your little one.) Most of the Beech Nut First Advantage foods are over 30 calories per ounce. Apple Delight is NOT, but all of the others I have found were at least 30 (if not 40) calories per ounce. They add dried egg yolks to the food to boost the calories. It costs more, and so many stores don't carry it. When you consider cost per calorie it costs less than other foods. If you need to boost calories yourself you can add things like mayo or oil to baby food, but that just sounded gross to me.

If you have any specific questions I'm more than happy to share. I was just so excited about how she is doing. :D

[apraxiax2mom]

Hi-
I know this may sound a little personal, and you certainly don't have to answer me if you don't want to, but I am curious about your daughter and g-tube feeding. Has she always been fed that way? Because of oral weakness, or something else? I am curious because my oldest son is such an extremely picky eater. I am constantly worrying that he is not getting enough calories (not to mention vitamins and minerals and such).

Tara

[aligreat]

Cassia was placed on an ng-tube (goes in through the nose down to the tummy) within a few days of her birth. She had hated having a tube in her nose all of the time, and she was constantly pulling it out despite all of the tape the nurses used to keep it in place. When she was almost 3 months old she had a g-tube surgically placed through her abdominal wall. This made her a happy baby! :D The day after the surgery she kept pushing up with her legs on her inclined bed and letting herself slide down as she laughed. She was able to finally come home from the Intensive Care Nursery when she was exactly 12 weeks old--just after Easter of last year.

We are always trying to introduce Cassia to new textures. This is where having a twin comes in very handy. If Cassia isn't interested I give it to Alexandria, and suddenly it (whatever "it" is) becomes very interesting to Cassia. :cool:

As for calories, we read all lables, choosing the highest calorie icecream, whip cream, baby food, etc. The thing I like about pediasure is that it is 30 calories per ounce and it has lots of nutrients.

[Drew's Mom]

My oldest son needed more calories than most kids because of his mitochondrial disorder. He was mostly tube-fed, but we were instructed to increase calories for anything he tasted - to get the most out of what he was actually eating by mouth.

Other things you can use to boost calories - whole milk yogurt, butter, cream, sour cream, avocado (loved guacamole), oils, whole milk or part cream puddings and custards, salad dressings (my guy liked everything to be flavorful - even spicy), or cheeses - particularly cream cheese.

[amiller]

If your child is able to take foods by mouth (ie chewing and swallowing are not issues) I advise that you give them ALL they will take by mouth and use the tube as supplement / weight maintenance only - otherwise you will never get them used to the variety of flavors, textures etc. that they will encounter when eating by mouth only. Trust me, a very dear friend of mine learned this the hard way!

[aligreat]

Cassia has recently discovered ketchup. She loves to take whatever food she has and dip it. This way she gets the salty taste she likes, and she also gets exposed to many different textures. She even ate an entire chicken nugget last week. I was very surprised. Usually she only chews and spits out anything thicker than pudding.

[signsofearlylife]

Thanks for all of the great tips for boosting calories. My 13 month old daughter keeps falling further and further behind in her weight and if we can't get it up before her 15 month appointment, they are going to start running tests and doing "procedures", although not sure what kind.

The hard part is that she doesn't like to eat, or rather, she doesn't like anything of any substance in her mouth. She will gladly eat baby oatmeal cereal and sometimes a couple of baby foods (peaches and maybe one or two others). I had to start buying commercial foods since she couldn't manage any of the homemade baby foods I made (my son loved them when he was starting on solids). She just gags and chokes and throws up when she has anything of any real consistency (including mashed bananas, sweet potatoes, etc.).

She started with an average birth weight of 7 lbs., 1 oz. and at her 12 month appointment weighed only 17 pounds. She's gone from 40% weight down to below 0% (negative 10% according to the ped). They haven't done anything about it yet since developmentally she is on track and her height and head circ. continue to go up (50% on both). The ped. said to start adding mayo or butter or anything with calories to her food, but it's hard when she won't actually eat food.

For the last 3 weeks we've been trying to add butter to her baby oatmeal, but then she doesn't eat it. We've tried making it with breastmilk, but since she started solids she refuses that. I've tried giving her the smoothies that we make for our family made from yogurt, berries, o.j. and milk (although she is allergic to cow's milk so she and I use soy milk). I've also been trying to add silken tofu to baby foods - which, of course, she then won't eat. We've also tried yogurt (regular, soy, and goat's milk). What else, I've tried everything I can think of and was so glad to find this post tonight.

Is the Pediasure just over the counter, or something that has to be prescribed by a doctor? I'm getting kinda' desperate at this point and try to get her to eat like five different things at a meal, some with textures and some Stage 1 baby foods, usually for a final total of one bite or less of each item (unless it's baby oatmeal, then we might get 10 bites or so of that), and then hoping that she doesn't throw up when she starts gagging.

Sorry for the long post. Any thoughts would be greatly appreciated!!!

[Drew's Mom]

PediaSure is OTC and available in a variety of flavors. It is lactose-free, but not dairy-free. There are nutritionally-equivilent generics available (Walmart has their own version, at least) that are substantially cheaper, but may not taste as good.

Have you tried mixing her fruit with her oatmeal and soymilk or breastmilk and making a Fruit-and-cream type flavor?

[amiller]

I also have a slew of "recipes" for Pediasure:

blend up fruit in it to make a smoothie (works best with vanilla unless the fruit complements the flavor - bananas or strawberries in the chocolate are good, and they also both work well in the strawberry

Add plain yogurt to the Pediasure for a creamier texture

soft-freeze it for a milkshake like texture

blend with ice cream for a different milkshake

Those are the most popular ones around here. And remember, many kids develop at different rates. My totally typical 8 year old was well under the "average" growth charts for her whole life and still is only in the 5% range, but her trend was upward and that is all that matters. AND YOU ARE THE ONLY ONE HWO CAN CONSENT TO "PROCEDURES" - if you feel there is nothing wrong with your child, you do not have to let them poke and prod him!

[signsofearlylife]

Have you tried mixing her fruit with her oatmeal and soymilk or breastmilk and making a Fruit-and-cream type flavor?

I tried mixing her cereal with soymilk this morning and she gobbled it up!! YEAH!!! Not sure why I hadn't tried that before. Thanks, so much, for the idea!! At dinner, I tried mixing the cereal with peaches and soy milk but she wouldn't eat it after one bite. So, I did the oatmeal with just the soy milk and then peaches separate and she ate that all up. What a successful eating day!!!

Thanks again for the tip!!!

[signsofearlylife]

And remember, many kids develop at different rates. My totally typical 8 year old was well under the "average" growth charts for her whole life and still is only in the 5% range, but her trend was upward and that is all that matters. AND YOU ARE THE ONLY ONE HWO CAN CONSENT TO "PROCEDURES" - if you feel there is nothing wrong with your child, you do not have to let them poke and prod him!

Oh, man, I had a whole, big post and my computer locked up. Anyway, my daughter went from 40% to 20% to 10% to less than 0% (-10% actually) on the weight charts. She has gained some weight between each check-up (the latest, between 9 and 12 months was a weight gain of 1 lb., 5 oz.).

I remind myself that I can't compare my two kids (or any others), but my son has always been in the 97th% for everything until age 1 when he was already walking and dropped to 50% for weight. Even without comparing them, I am worried about my daughter.

I kept thinking her last check-up 4 weeks ago would've shown a significant gain because we had, at last, identified her milk allergy (through breastmilk). She went from 10-15 poopy diapers a day to usually 1. I kept thinking surely she would be gaining lots of weight now. That's not what the scale showed, though.

My son has his 3 year check-up on Wednesday, and I am going to have Jaina weighed that day to see what progress she's made in the last 4 weeks. It's now been about 10 weeks since I've been off cow's milk, so I'm HOPING, HOPING, HOPING that the scale will show a nice gain for her.

Thanks for all of your great ideas!!!

[Drew's Mom]

Good luck! Kids with weight gain issues are exhausting. I hope this passes quickly for her.

And I'm glad she liked the creamier oatmeal!

[signsofearlylife]

Well, not much luck for my little Jaina at the doctor's on Wednesday. She has only gained 7 ounces in the past month, and if she keeps at that pace, she will still be considered very underweight at her 15 month appointment. Thanks to all of you for your calorie-boosting tips. We are going to continue to use them and see if we can get Jaina's weight up before the beginning of March.

[Drew's Mom]

Silk makes a soy-based creamer for coffee - that would add even more calories to her oatmeal if you can find it.

I'm sorry it didn't go better for you. She has a bit more time before that appointment, and I'll pray she is making forward progress before then!

Don't think I'm being mean here - I have been there and done that with all the testing and procedures for a small child, and it's no fun for anybody. So, please take the following as I intend it - this is my opinion, based on my experience.

If the doctors want to start testing for some different things, get more information on what tests and why and what they are looking for, and then do some research yourself. You have a say in what they look for first, and how they go about doing it. If there is actually a digestive problem, like maybe celiac disorder, at the root of her weight gain issues, it will be much better for her in the long run to have it diagnosed early.

Reason 1: There will be less damage to her digestive tract, or if it's something besides celiac, you can fix the problem faster.
Reason 2: She's young enough to not remember the testing.
Reason 3: If you find out that there is nothing wrong physically, you'll have peace of mind knowing that she really is just petite.

Testing isn't always a bad thing. No one wants to poke or prod a kid if they don't have too - even doctors - but sometimes a little poking and proding is the better part of valor.

My experience is extreme, but if we had chosen to wait and not allow any tests or procedures on our oldest son, we would have not know how to treat his rare congenital metabolic disorder, and we would have lost years of his life. With some simple modifications to diet, medications, supplements, and treatments, we were blessed to parent him for five and a half years. I'm not suggesting that Jaina will die if you don't follow the doctors' orders. But IF her body requires a different diet than most of our bodies do, if will be better for her if you learn about it sooner rather than later.

[aligreat]

I had an interesting conversation with Cassia's physical therapist recently. I was talking about how mean I am to Cassia. She doesn't like to do some (OK, most) of her exercises, but I have her do them anyway. She has been working with this therapist for less than a year, and she has gone from a little one whose only activity was vomiting to a scooting, crawling, cruising and sometimes even walking little one. The therapist told me that what may look like "mean" now is really nice in the long run. It reminded me of a horse I saw when I was taking horseback riding lessons. It had a chlorox bottle hanging from its tail. I asked if the horse had gotten tangled up accidentally, and I was told that it had been tied there on purpose. The horse spooked easily, and having something that would tap the horse each time it took a step was the easiest way to desensitize it. The teacher went on to say that it may seem cruel now, but in the long run it was the kindest thing you could do.

[c01dunlap]

...she has gone from a little one whose only activity was vomiting to a scooting, crawling, cruising and sometimes even walking little one. ...
Congratulations on such great progress with her! And hats off to you for being "mean". It sure can be hard being the bad guy... good reminder for us all that it's worth it ;)

[Drew's Mom]

Yeah - sometimes being "mean" does pay off. We were told that Danny would never even smile, but with lots of work and PT, he smiled, signed, sat, scooted, walked with a walker, drove a powerchair, used a speech output device, and even learned the potty.

Congrats to Cassia! What accomplishments!

[signsofearlylife]

Don't think I'm being mean here - I have been there and done that with all the testing and procedures for a small child, and it's no fun for anybody. So, please take the following as I intend it - this is my opinion, based on my experience.
My experience is extreme, but if we had chosen to wait and not allow any tests or procedures on our oldest son, we would have not know how to treat his rare congenital metabolic disorder, and we would have lost years of his life. With some simple modifications to diet, medications, supplements, and treatments, we were blessed to parent him for five and a half years. I'm not suggesting that Jaina will die if you don't follow the doctors' orders. But IF her body requires a different diet than most of our bodies do, if will be better for her if you learn about it sooner rather than later.

I definitely don't think you're being mean!! I know that many things we do that may not seem "nice" to our children right then are best for them. My son had to have surgery done as an infant and then wear a catheter for some time after, but we knew it was better for him to have it done then as opposed to when he was older. Now, he has no memory of the surgery (although the time waiting while it was being done, the way he looked afterward, and the weeks after are forever burned into my mind).

I'm just going to take this one step at a time. Right now, my focus is to get Jaina's weight up, up, up. When the appointment comes and we see where her weight is and if the doctor wants to start running tests, we will weigh the pros and cons at that time. Thanks for the reminders that we don't have to let the doctors do whatever they want, but that testing can be a very pro-active way to get my daughter on the right track (maybe before things got to a more serious level). If her weight still isn't up, I would be inclined to have the doctor's try to figure out why since I am worried about her. Maybe starting with the least invasive as possible. My concern for her is doubled by the fact that nobody (and I mean NOBODY) in my family could be considered "Petite". Between my parents, five sisters, one brother, and sixteen nieces and nephews, everyone falls on the upper ends of the charts, and now here we have this itsy-bitsy little girl. Maybe some fluke recessive gene, who knows?

Thanks for all of the input on this. I am going to keep trying to get Jaina to pack on the pounds (so against what I've been taught, but I'm having to re-think all eating decisions now when it comes to her). Hopefully her weight will get at least back on the charts by March. Thanks again to all of you!!

[aligreat]

Thanks for all of the input on this. I am going to keep trying to get Jaina to pack on the pounds (so against what I've been taught, but I'm having to re-think all eating decisions now when it comes to her). Hopefully her weight will get at least back on the charts by March. Thanks again to all of you!!

After reading your last post I went back and re-read your previous posts on this thread to see what all you have tried. I discovered that I didn't answer your question about pediasure. The pediasure that we use is by prescription only. It is called their enteral formula, and it has 30 calories per ounce. I think that it is higher in calories than the kind you get over the counter, and since it is a prescription our insurance pays for it. :D Also, when I give my girls yogurt I give them gogurt since it has 35 calories per ounce. I know that you mentioned not giving your daughter dairy, but you also mentioned giving her yogurt. If she does all right with yogurt, make sure that it has whole milk in it. I love the gogurt because it comes in those little 2.25 ounce tubes, which are the perfect size for my little ones. Sometimes I take a gogurt, put it in a bottle, and add enough pediasure to make it drinkable. This has more calories than the drinkable yogurts you can buy at the store.

If you wanted to try the Beech Nut First Advantage (the baby food that has dried egg yolks to boost calories) try shopping at Albertson's. It is the only place I have found that has this type of food. Their Sweet Potato Souffle has 40 calories per ounce. Apple Delight only has 25 calories per ounce, but the Apple with Rice Cereal has at least 30. Cassia's favorite is the one with peaches and cinnamon. I like checking out baby food for caloric content. I once found a Gerber product that had writing in Spanish first, with little English subscript. It was a bean, rice, and chicken dish with 180 calories for a 6 ounce serving (30 calories per ounce.) It was a bit spicey, but Alexandria really liked it. It was a bit too solid for Cassia, but we'll get there.

I noticed in your signature that you are still breast feeding. My little ones are almost two, and I still pump for them. They never really latched on, but I was able to pump more than enough to meet their needs. This also allowed me to boost the calories with formula. Breast milk only has 20 calories per ounce, and so I added formula to make it 24 calories per ounce until they were one year old. At that point Cassia was switched to the 30 calorie per ounce pediasure.

Let us know how boosting calories goes for you--what works and what doesn't.

[Kei_as_in_K]

Have Jaina's thyroid levels been checked recently? Hypothyroidism can cause low weight & decreased appetite. William's levels are checked every 6-8 months and he's been on thyroid medication since he was 12 days old. (he just takes one little easily dissolvable pill every day).
For the first 6-7 months of his life, I pumped, fortified the breastmilk & fed him until his cardiologist was happy with his weight (he had 2 heart defects, both corrected surgically by 6 weeks). At one point I was adding formula and polycose powder (prescribed) to the milk to up the calories.

Keep us updated!

[amiller]

Breast milk only has 20 calories per ounce, and so I added formula to make it 24 calories per ounce until they were one year old. At that point Cassia was switched to the 30 calorie per ounce pediasure.

There is also a substance called Human Milk Fortifier (available by prescription only) that boosts the calories content of breast milk.

[lovemy6sweeties]

The fact that she doesn't like textures and they make her gag and throw up can be indicative of sensory issues, and an OT or ST trained in feeding therapy can help with that. There is a food hierarchy that all children follow - and it's true that different kids follow it at different rates, and it may just be that she is delayed. I know my Brady would eat all kinds of pureed baby foods, but as soon as we started with chunks he wouldn't eat those - stage 2 babyfood was it. We had to work really hard to get him to tolerate food with more texture, and he is still a really picky eater. We did speech therapy with a therapist specializing in feeding therapy every week for a year and it made a huge difference. I think the calorie packing is helpful, but checking out the reason for the food aversions might help get to the root of the problem. Just a thought....

[signsofearlylife]

After reading your last post I went back and re-read your previous posts on this thread to see what all you have tried. I discovered that I didn't answer your question about pediasure. The pediasure that we use is by prescription only. It is called their enteral formula, and it has 30 calories per ounce. I think that it is higher in calories than the kind you get over the counter, and since it is a prescription our insurance pays for it. :D .

I'm going to wait to see what the doctor says before I give any of the Pediasure or its alternatives (although it looks like I'd have to find the soy alternative anyway).

[/QUOTE]Also, when I give my girls yogurt I give them gogurt since it has 35 calories per ounce. I know that you mentioned not giving your daughter dairy, but you also mentioned giving her yogurt. If she does all right with yogurt, make sure that it has whole milk in it. I love the gogurt because it comes in those little 2.25 ounce tubes, which are the perfect size for my little ones. Sometimes I take a gogurt, put it in a bottle, and add enough pediasure to make it drinkable. This has more calories than the drinkable yogurts you can buy at the store.[/QUOTE]
Thanks for the Gogurt tip. My daughter, for whatever reason, seems to do just fine with yogurt and cheese (although not milk, sour cream, or ice cream). She refuses to take a bottle of any kind, but maybe I could just squeeze the tube into a bowl and spoon feed her or dilute it with soymilk and let her drink it from a cup.

[/QUOTE]If you wanted to try the Beech Nut First Advantage (the baby food that has dried egg yolks to boost calories) try shopping at Albertson's. [/QUOTE] I have an Alberston's just up the street, so I'm going to check them out!!

[/QUOTE] noticed in your signature that you are still breast feeding. My little ones are almost two, and I still pump for them. They never really latched on, but I was able to pump more than enough to meet their needs. This also allowed me to boost the calories with formula. Breast milk only has 20 calories per ounce, and so I added formula to make it 24 calories per ounce until they were one year old. At that point Cassia was switched to the 30 calorie per ounce pediasure.

Let us know how boosting calories goes for you--what works and what doesn't.[/QUOTE]

I think that is fabulous that you have pumped for your daughters for so long!! My son weaned himself at 18 months when I was pregnant and I had pumped for 15 of those months while working. My daughter, as I mentioned above, will NOT take a bottle, and since I quit work before she was born, it hasn't been a necessity. I will definitely ask my doctor about supplementing with Pediasure.

We've actually tried just feeding Jaina the entire day and she seems to be eating a lot more than she was when we tried to get her to eat three meals and a couple snacks. So, maybe this will make a difference. Thanks again for all of your wonderful tips!!

[signsofearlylife]

Have Jaina's thyroid levels been checked recently? Hypothyroidism can cause low weight & decreased appetite. William's levels are checked every 6-8 months and he's been on thyroid medication since he was 12 days old. (he just takes one little easily dissolvable pill every day).
For the first 6-7 months of his life, I pumped, fortified the breastmilk & fed him until his cardiologist was happy with his weight (he had 2 heart defects, both corrected surgically by 6 weeks). At one point I was adding formula and polycose powder (prescribed) to the milk to up the calories.

Keep us updated!

I don't believe Jaina's thyroid levels have ever been checked. Are they routinely checked in babies or is there some factor that indicates to doctor's that they should do so? She wasn't born small, although she was much smaller than expected. She was 7lbs., 1 oz, compared to her 9lb, 1 oz older brother. I had a very hard time putting on any weight during the pregnancy (only 18 pounds compared to the 31 I gained with Jacob). Even so, the doctor's told to me to expect a ten pounder (most of the babies in our family, myself included, were ten pounds). Although we were a little shocked at first to see such a tiny baby, it didn't seem to crazy for her to be 7 pounds since that is about average in this country.

So, anything I should be on the lookout for to indicate hypothyroidism? It is something I can ask the doctor about at our next visit.

[signsofearlylife]

There is also a substance called Human Milk Fortifier (available by prescription only) that boosts the calories content of breast milk.

This is something else I can ask about at our next visit. I definitely don't want to stop nursing, especially since Jaina has so many feeding issues and is allergic to cow's milk. Thanks for the heads up!!

[signsofearlylife]

The fact that she doesn't like textures and they make her gag and throw up can be indicative of sensory issues, and an OT or ST trained in feeding therapy can help with that. There is a food hierarchy that all children follow - and it's true that different kids follow it at different rates, and it may just be that she is delayed. I know my Brady would eat all kinds of pureed baby foods, but as soon as we started with chunks he wouldn't eat those - stage 2 babyfood was it. We had to work really hard to get him to tolerate food with more texture, and he is still a really picky eater. We did speech therapy with a therapist specializing in feeding therapy every week for a year and it made a huge difference. I think the calorie packing is helpful, but checking out the reason for the food aversions might help get to the root of the problem. Just a thought....

I definitely would be open to some sort of feeding therapy for Jaina if it doesn't look like her weight is doing well by March. What you mention is something I have been thinking about and that is am I messing things up by trying to pack on the calories and then causing the doctor to overlook the real problem? At this point, though, I really, really think Jaina's weight issue stems from her milk allergy and the fact that she wasn't absorbing anything (it was all coming out in those 15 poopy diapers a day). I think 15 poopy diapers a day would cause anybody not to gain weight, I'm kinda' surprised she didn't lose weight. So, if that is the real problem, now that the mystery has been solved, packing on the calories should be fine and helping her to get back to where she should be. (Can you tell I'm half trying to convince myself here??)

If that is really the case, I would think her feeding issues are just that she's on a little behind on the learning curve for eating. But, I know there may be some underlying issue, too.

We have been trying to feed Jaina pretty much all day long every day now and she's actually expanded her food horizons already. She actually ate some mashed potatoes with minced up pot roast mixed in - and didn't gag!!! And wanted more!!! And some smashed bananas!! And a bite of cracker!! We have also been having her feed herself, and that definitely gets more food into her when she can give herself the bite of cereal or yogurt. So, we're just going to keep introducing new things like crazy, feeding her all day, and giving her more chances to feed herself, and see if all of that helps her catch up (both weight-wise and with the problems with texture, gagging, etc.) by March. If not, I will be open to almost anything to make sure my little girl is on the right path.

Thanks again to all of you for your time and input!!!

[AK Deb]

Hi!

I'm so glad that your daughter ate the oatmeal with soy milk!!! The following thoughts may be a bit simplistic, but I thought I'd throw them in the mix.

When we were starting our girls on solids, we were told that it takes on average 10-20 experiences with a new food for a child to accept it and gobble it down. We have twin girls born at 33 weeks, so weight gain was also a focus for us. I found that I was so focused on how much they were taking in that I I was compelled to "try something different" if they refuse the food. In some cases I think I didn't give the new food an adequate trial. Thankfully, now at 3 1/2 years old, our girls are doing great. They are right on with their growth and development and eat like your average 3 1/2 year old (that is...gorge themselves at one meal then pick at everything for the next 2-5 meals! Ahhh...such is the life of preschoolers).

The other thought I had with your daughter was whether you've been to see a speech therapist regarding her behaviors. Many of them who work with kids with feeding problems can find out LOTS about your kid with a swallowing/feeding eval. Some kids have more going on than just food refusal from "stubbornness" or "taste" issues. A good Speech Thearpist may be able to give you some insight and direction on where to go next (not to mention some tricks to beef her up).

Not knowing your daughter at all, there are some kids that exhibit this kind of behavior in conjunction with Sensory Integration Dysfunction (or Sensory Integration Disorder). It becomes a "texture thing" to the extreme. It can show up in other areas of life as well (one of our girls had really bad transition problems as her major symptom of DSI which began at about 4 months old and resolved with the help of a great OT). You might want to look into the book "The Out-of-Sync Child" by Carol Kranowitz. It has a great checklist of symptoms/signs of DSI as well as other great info on DSI. Here's a link to an interview with Kranowitz to give you just a snipit.

http://www.comeunity.com/disability/sensory_integration/carol-kranowitz.html

I don't mean to make assumptions about what's going on, just some different thoughts.

Hope your daughter gains and gains and gains!!!
Take care,
Debbie

[signsofearlylife]

The other thought I had with your daughter was whether you've been to see a speech therapist regarding her behaviors. Many of them who work with kids with feeding problems can find out LOTS about your kid with a swallowing/feeding eval. Some kids have more going on than just food refusal from "stubbornness" or "taste" issues. A good Speech Thearpist may be able to give you some insight and direction on where to go next (not to mention some tricks to beef her up).

Debbie

Hi Everyone,

I am so grateful to all of you for sharing your insights and experiences. Since last posting, we've made some progress with Jaina's weight. We've tried a billion different things and work hard everyday to get her to eat. Finally, at 19 months, she has hit the 20 pound mark, enough for the doctor to say that if she can keep it up, they'll stop worrying.

I also contacted our local early intervention since she also didn't seem to be talking much (and actually her talking seemed to regress a LOT). She's since been evaluated with oral motor delays and at a 9-10 months for expressive language. Hopefully the speech therapist who specializes in feeding issues will get her back on track.

Thanks so much to all of you for all of your comments, suggestions, and sharing. I'm so glad we're moving forward with getting Jaina up to speed!!!