My son loved plain guacomole at this age, now at five years old, he won't touch it. I'd by the brand that has it in a small bag, cut off the corner of the bag, and squeeze the guacomole onto a spoon and feed it to him. He could eat half a bag in a sitting.

The point of this is that you never know what sort of bizarre food a baby or toddler might love. Another his was an apple sauce/baby oatmeal/cottage cheese combination. Is your restriction all dairy or just milk and ice cream? Peanut allergies?

Something that kids at any age love is "Puppy Chow" a chex cereal/peanut butter/chocolate mixture. Jello Jigglers are fun and can be made with fruit juice to add calories. What about food like hot dogs? How's his chewing and swallowing mechanism?

For protein as his diet changes, you can also buy freeze dried egg whites, whey or soy powder and blend with other foods to get high quality protein in him. Put olive oil anywhere you can that would be acceptable to him. I make fruit smoothies and use olive oil to give it a rich consistancy, important if you are leaving milk out. Making food such as fruit or veggies, look like animals, especially bugs, is also a hit with my kids. Also tiny foods, like a mini hamburger or a tiny cake, is so cute and makes kids want to eat the whole thing.

And I'm sorry that your son has this condition. I have no doubt that this is a heavy burden for you to carry, I hope you are getting adequate support for yourself and that you don't feel overwhelmed. Thank God for all of the medical technology available that allows people with this condition to stay well and thrive. I know your son is precious!

Igloo, does he have enough teeth to eat pizza? There is something very fun about eating a triangle of gooey pizza with one's hands. Leave off the cheese if necessary, of course. And it has a 'strong' flavor.

Speaking of strong flavors, our kids loved tuna salad- oil-packed Italian tuna, hard-boiled eggs and real mayonnaise. That'll get some calories into him- plus lots of protein.

Thanks for the good ideas, and I'll be picking a bag of guacomole this afternoon. Lots of good fat in that!

I forgot pecan...he does eat pizza. He's not very good at eating stuff he has to take bites off, so we cut it up. But it is a staple.

He didn't start eating any solid foods until he was 11 months old, and missed an important learning curve at that point so we're behind a bit on the basic skills (like being able to bite off a bite from a sandwich). But we've worked past all of the texture issues (he used to choke on everything to protect himself which was a nightmare!). So now he can eat anything I can get into a small enough bite. He does have teeth and chews fine. His gag reflex is actually over reactive so we don't worry too much about choking which is nice :)

He is on a soy based formula (which we can also put into a feeding tube if necessary). But we've learned that milk, cottage cheese and ice cream are no-no's. His little system doesn't handle them well and he gets stomach cramps, liquid stools...you know, all the fun stuff. Through experiments we've learned he can handle the "light" yogurt and yogurt based butter (or butter like stuff). But I don't give him more than half a container a day because the milk proteins can still cause issues. He does eat cheese, but because he eats so very little (even pizza he'll eat only five or six bites which is a huge meal for him).

I love the puppy chow idea :) and nuts aren't an issue for him. He's not actually allergic to anything, but just can't handle milk for some reason. Tuna salad is good too :)

We actually eat pretty healthy, and don't do much sandwich stuff, so I needed to get some new ideas. Fries and pizza are getting old LOL and with him, we have to keep him interested in trying foods so he'll eventually get past this. (They either starve to death...which we can avoid now adays... or grow out of this syndrome by the time they're five so we've a way's to go).

His favorite food is actually medium rare steak LOL I certainly don't fit any of the "usual" baby food books!

Those little goldfish crackers...peanut butter studded with chocolate chips (you may have to chop up the chocolate chips at your son's age)...anything dipped in ranch dressing...pizza bagels (just put some sauce and cheese on a bagel half and broil)...

I'll have to give this some more thought. Right now I have to pick up my kids!

Medium rare! A man after my own heart!

Well, he does have expensive tastes. Don't let him near lobster.

LOL Pecan, he loves Alaskan King Crab (of course), scallops and king salmon, both white and red. I'm sure lobster wouldn't be a stretch for him.

I'm just too lazy to cook King Crab, Scallops and Salmon for his five bite lunch :) (He gets that sort of thing at dinner with mommy and daddy).

Depends. If their parents have ticked me off, they'll be eating marshmallows for the last half hour they're with us!!

(just kidding-- I HAVE, on occasion WANTED to do that, though!)

LOL Bill I'll remember that when we kidnap you to install our tile :oP (I'm trying to hire someone now to head up/over/wherever you are) The price for a good kidnap of a tile installer goes sky high this time of year!

I actually make him "moose poop" out of marshmallows on occasion. My own recipe out of desperation to fill him with calories. Marshmallow cream, graham cracker crumbs, chocolate syrup all rolled into balls the size of moose poop and rolled in chocolate powder.

I told a friend about the recipe and she made it for her child, but apparently didn't know what size moose poops were so her kids were enjoying huge cookies...seems she'd only seen a cow pie in her poop past...heh heh

My youngest has similar tastes. She also had extreme dairy intolerance, except for yoghurt. She has always enjoyed steak and roast beef, and especially likes food that is more strongly flavored: Mexican, Indian, Chinese and Thai. The girl is almost 15 now, and is still a very picky eater. At least now she can take responsiblity for her choices! Oh yeah, she also has a BIG sweet tooth, unfortunately.
Have you tried slices of avacado?

We haven't done avacado for a while. It wouldn't hurt to do that again since he did like it. Back when he couldn't swallow it was one thing that was mushy enough to get a few bites in him. That wouldn't be too hard to cut up for lunch so we'll give that a try again and see how it goes.

Thanks all for the ideas. It's amazing how soon you forget this stuff (it's been 40 years since I was a child) and we just don't eat snacky stuff. I did grab some frozen vegis (we never eat those LOL) yesterday to give him at lunch. He went for the carrots in those lovely little squares heh heh

Igloochic,
Your grandson seems to like high protein foods like salmon and steak... how about meatballs? canned salmon? I second avocado. Frozen blueberries? Berries of any kind? Hard boiled egg? Prepared sushi? I don't know much about your grandson's condition, but I'm never a fan of the "crap" as you so eloquently put it. How about high protein bars like cliff bars or odwalla bars?

Has he been tested for lactose intolerance (in addition to his other issues)? That can cause the loose stools and tummy upset with dairy products. Some people who are lactose intolerant find that there are certain dairy foods they can eat with no problem (in varying amounts from a little to a lot), while other items can cause problems with as little as one bite. If he is lactose intolerant, Lactaid milk, ice cream, etc., might be tolerated, and you might be able to crush up the lactaid chewable tabs and mix them into regular dairy products. I take the lactaid pills, but I think your DS would be a little young for that pill swallowing as yet :-)

Half of my children were lactose intolerant. We took enzymes with milk, all eventually grew out of it by the time they were seven or eight, and now we go through 10 gallons of milk a week. Lactaid once made a liquid "drops" that you added to regular milk, but I think it's no longer available. Is lactose free milk still available? You can use that to make your own ice cream and yogurt, pudding, etc. Check health food stores for lactose free cheese.

Anywhere you can get eggs or egg whites would be highly beneficial. You can buy powered egg whites at any grocery store. I see them at Super Target for about $4 per can (one can equals 57 egg whites).

I don't know about the drops, but they sell all kinds of Lactaid milk in the supermarkets near us (southern NY state)--reg, low fat, fat free, chocolate (I think), and I believe they make/sell Lactaid ice cream as well.

My lives-on-chips-and-cookies-never-shall-anything-green-pass-my-lips 11-year old son LOVES fried tofu. In the food court of our local mall is a Japanese restaurant called Teriyaki Boy. Fried tofu basically looks similar to fried mozzarella sticks, or chicken nuggests, or fish sticks. It was not a big stretch for him visually, but I think it's better for him then those things. They serve about 6 good sized chunks of fried tofu over brown rice, and then glop on a mild ginger-y soy-ish dipping sauce. It seeps into the rice (I always get him brown rice) and is a total delicacy.

My son also loves California Rolls. I don't know if your grandson can digest everything in them. Because my son can eat $20 worth in a sitting, I started making them at home. We found an Asian market and I let him start picking out what 'stuffing' he wanted. He loves to do the filling and the wrapping now. Is there a way to make this a fun food activity for your grandson? You could also make sure anything in it is digestible. Or, you could do something with won ton wrappers!

I was thinking more about the CA roll idea. Since he likes crab and might try avocado, what if you made up a salad type conconction using the imitation crab (surimi, I think it's called) with avocado and brown rice with a little soy sauce to season? He can eat it with his hands. You can even put in some minced cucumber and carrot diced very fine, if you like. I'd probably hold off on the wasabi...for a few years at least!

I have a skinny DS, so it seems I've always fed him anything he wants. Luckily, he eats a lot of veggies and protien and fruits, so if he wants something sweet, he gets it.

We have, however, lately been trying to eat more healthy, mainly because I need to lose weight. And I am feeding DS and DH more healthy now, too. I'm just going to have a skinny kid and now that he is out of the toddler stage, I'm not so worried. With the genes DS has, he is just going to be petite and probably not too tall. He is pretty darn cute though if I say so myself!

My DS loves the frozen PBJ crustless sandwiches that you thaw out for a few minutes, cashews are his fave, I've even fed him bread with butter. He loves Chocolate covered strawberries, the chocolate is fattening and the strawberries are good for him. One of his favorite snacks-LOADED with fat is buttery popcorn and he eats with M&M's. I tried to name things that would get some weight on your grandson. I could name more, but there are a few our our favorites. Hope it helps.

Mashed avocados. My son will eat this like ice cream. He also loves fruit cocktail (I get the kind in pear juice). Also, pasta. There are small pastas like orzo and tubetini which should work for your little guy. Mashed potatoes with gravy.

My son isn't exactly picky (He was putting away fried calamari like crazy last weekend!)but he just doesn't eat a lot and since he's a skinny little guy I like to make sure that whatever he does eat, counts. Apparantly I was the exact same way when I was little but my mom dealt with that by feeding me heavy cream to put weight on (thanks, Mom!).

If your son will eat some yogurt keep an eye out for the stonyfield farms full fat stuff like yobaby. They make a drinkable yogurt, too. It's good stuff, and delicious.

Good luck, igloochick! I hope he grows out of this.

Nina

Am so glad he likes protein. Perhaps it is what he needs right now. I would try to keep other things healthy and balanced to the extent you can. If that is impossible at one snack, then at least over the course of the day, I would go for the combo of main food groups. Grains/veges/protein (and hopefully you can find a dairy something someday that works!)

Maybe there is an advanced nutritionist out there who can help.

How about a smoothie? Freeze a cut up banana, put it in the blender with a few ice cubes, a dollop of PB, a squeeze of chocolate syrup and some vanilla yogurt and whirl away. If it is too thick, add some water or more ice; if you make it thick enough, it is like soft ice cream and my children both love it--and it is fairly healthy, too.

My kids *adore* Nutella. I don't serve it at home - it is a special treat that they only get at grandma's house. A peanut butter and Nutella sandwich is absolute nirvana (or so I "hear", LOL....)

Carrie

Hi Igloo,

I'm mulling in my head the more calorie-dense things I feed my kids, and things that are easy enough to make for lunch.

Meat or cheese tortellini and ravioli can be found in the freezer case. Boil up a bunch and stick it in the fridge for future meals. Meatballs -- make them yourself to keep the sodium down, or, in a pinch, buy them premade. Peanut butter in any way, shape or form -- I like the suggestion for smoothies b/c it will be easier for him to swallow. We go through PBJ on whole grain bread like it's going out of style.

Morningstar makes a variety of frozen, easy to heat healthy foods, like spinach/artichoke nuggets. I always think of spinach as a good-for-you food. If you discover the milk/ice cream problem is a lactose thing, use the lactaid milk to make homemade mac and cheese -- with bits of ham in it. You can freeze it in small portions.

Since he likes salmon, could you make up a batch of mini salmon cakes and freeze them, and then thaw one at a time for meals?

I'll keep my thinking cap on... it's hard to think high-calorie, high-fat, and oh yeah! healthy. :-)

Amy

Thank you all again for opening my eyes to different foods for Jesse. I've tried many and some work, some don't but they're fun to try anyhoo :) I've certainly been down some isles in the grocery store I hadn't been in before!

We don't know what's up with the milk thing. He's not lactose intollerant, and he's not allergic, but he just can't handle milk. Weak gastric system I guess (and we quit testing because the little guy just didn't need any more needles or probes in him!).

We had our 18 month appointment this last week and FINALLY Jesse made the growth chart (5th percentile) that's the first time since he was born (3rd percentile and fell rapidly). So we've gone from this sick little man:

{{gwi:1545999}}

To our tiny monster today:

{{gwi:1546000}}

All with the help of many friends, near and far! Thank you!

wow, he is absolutely adorable and a charmer; I'm glad for all of you that he's doing so much better !!!

What a cutie! My kids used to like to eat just plain firm tofu cut up in bite size pieces. Little meatballs were a hit, too. Canned green beans not even heated up used to be a big hit, too. How about small pieces of squash or sweet potato? Not that my kids ate it, but it might work for your son. Buttered noodles (you can use margarine)are still a favorite. Or how about those breaded frozen chicken tenders and ketchup for dipping? Good luck!

Igloo,

I saw you use the phrase "failure to thrive" on a kitchen thread that I found earlier today and it brought back some unpleasant memories. So I did a search, found this thread. Our son had some problems during his first year, and that phrase was dangled around. Nasty three words. Made me feel like a lousy parent, even though I knew that wasn't at all the intention. Our son is completely better now; even so, my sympathies go out to you. It's tough being stressed every meal and snack about how much they're eating and if each bite packed as many calories as it could. (We had formula for him until age 2, too.)

Most of our high-calorie, successful foods have already been mentioned. Olive oil (even just to dip bread in), high-calorie yogurt (Yoplait up here, although Whole Foods has a whole milk yogurt now), spoonfuls of peanut butter, miniature Ritz peanut butter cracker sandwiches, avocado, soups (egg drop soup is a big hit), butter in/on everything, popcorn shrimp, smoothies... For a while I was spiking everything with heavy cream, although it sounds like that would be a huge problem for you. The soup is particularly good because you can sneak lots of nasty oily calories in there without affecting the taste too much. If he likes hummus, you can make your own with lots of olive oil and even some vegetables. Microwave a sweet potato (pierce with knife, roll with olive oil, wrap loosely in wax paper), then mash the cooking olive oil and butter and maple syrup and whatever else you can find in there to make it appealing. Twice-baked potatoes have lots of calories, as does gravy. Someone mentioned pasta - I've seen some miniature ravioli (size of my pinky fingernail) in the frozen section of some of the local organic stores. There's also a good recipe for edible peanut butter "playdough" somewhere out there.

HTH,
Cate

Thanks Cate :) You added some new ones for me. I'm sorry to hear of any mom who understands my little guy's problems from experience. The FTT as a diagnosis for his first 11 months really does make a parent question what they're doing doesn't it!

We made it off FTT at 15 months, and had a "normal" (ok any) growth chart going up until 18 months, then he took a dive back into FTT where he still hovers today. Despite that ugly phrase, he's stronger than he was, and to look at him, he looks like a normal little monster. :)

I don't know if you were ever hospitalized for FTT review...but for a good parent (and we are that) it really isn't a great experience. You're not supposed to know they're doing it, but they put you in either a glass room outside the nurses station, or put you in a room with cameras. We've had both. Whenever we visited a new hospital we'd have to go through it again, and I understand why they do it, but living in a bubble isn't much fun either. I don't miss those days.

I'm glad to hear your little one grew out of it. We're hoping for the same, but probably have a few more years of worry ahead of us. At this point we're just trying to get another few months without a feeding tube put into the little guy. We'll see how it goes :) Maybe edible playdough will do the trick LOL (I'm googleing that now) heh heh

Totally behind here in this reply, but a friend of ours has a son who is small and a super-picky eater. They tried using peanut butter as a play dough--putting dollops on his high chair tray, and also providing food props to dip it in and play with the PB. Apple slices, crackers, chocolate cookies, etc. Eventually, he got lots o' peanut butter in his belly, and started plumping up a bit. They also tried the colored ketchups, since he loves dipping everything in ketchup. Have you tried really fatty cuts of meat--ribeyes, short ribs, etc? While pregnant with my second child, the baby was measuring a bit small, so my doc recommended Whey Protein Isolate. It doesn't really taste like anything, and provides tons of protein that can be spiked into virtually anything. Do you have Jamba Juice up there? They have several non-dairy smoothie options that can be boosted with protein, and they have some healthy snack options. May be a nice choice while out and about . . .
Best of luck, and from the pictures, he sure doesn't look FTT--just PDC. (pretty darn cute)
Cheers,
S

Here's how we made edible play-doh--

Add honey to peanut butter until it's as sweet as you want it. Then stir in powdered milk- keep stirring well and adding until the 'dough' is no longer sticky.

The milk is non-fat- sounds as if you might ask your doctor about some high-fat, non-dairy alternatives. Wonder if soy-based dry formula would work...

Be sure he stays well-hydrated. That's a lot of protein for little kidneys.

Thanks :) I will see if I can find powdered soy milk (he can't drink milk based products) and eastsider...he loves dipping LOL so I'll give a peanutbutter dip a try when he wakes up.

We do go with fat heavy foods including fat cuts of meat, but he only eats a bite or two of anything so it's a challenge.

Unfortunately he's loosing weight again and having digestive issues so we're going to have to cut out the new stuff (I think chocolate is causing the problem...which sucks because he really likes M&M's and they're great fat calories). But we know peanutbutter, honey and soy are safe ;) So that might work well.

Soy based dry formula...hummmm I'd have to ask. We have cases of it and can't use it for his bottles because of the concentration we have to mix it at to acheive his calorie base. I'm going to guess that it might not because they really do worry about dehydration on his calorie base...we're probably safer if they make a basic soy milk in powder form.

He can't handle juices (they give him the runs very quickly) so we stay away from fruit. At this point, his digestive tract was supposed to be working better frankly, but it does not seem to be.

I'm rambing because it's been a bad week. It's hard to see him losing weight again. It seems like when I get him going on a great track or we find a magic pill (chocolate LOL) that really works, he falls apart about the time we get cocky about our success :( There's a reason the doctor said no one had ever been successful beating this problem without a feeding tube :( And that sucks!

How about bacon or sausage? Lots of flavor, fat, all the stuff I love but can't have. I've always thought there's nothing a nice fat piece of bacon couldn't fix . . .

igloochick--My daughters were lactose intolerant when they were babies, and while nursing I couldn't eat anything with ANY dairy in it, including milk chocolate. Even a little bit of butter on toast would do them in. Any other possible dairy he might be getting that could be bothering his digestive track? I sure do feel for you; my youngest has always been a terribly picky eater (even at 15,) and sometimes it seems that much of her childhood was spent being cranky or in tears, but she was never in any danger of not getting enough calories to thrive. Is the feeding tube awful? I'm so sorry for your troubles (kitchen too!) but can't help but admire you for your delightful sense of humor.

Igloochic- I don't mean to be difficult, but meat that is not thoroughly cooked can cause serious infections in children- so be careful with those rare steaks!
We had major issues with eating and weight with both our kids (adopted) so I sympathize. Does your son have a feeding tube? Little brains need lots of calories to develop, so as difficult as it is to consider, sometimes a feeding tube is a necessary evil. Our DD was profoundly malnourished when we adopted her, and I think it may have affected her neurologically

Indecisive we watch his weight progress very carefully because of the malnourishment issues. If things get too bad, we will go with a feeding tube again, but really, that's a last resort (I'm not sure which type of tube you dealt with but for us this would mean a G tube). He's had NG tubes and frankly any tube feedings for a small infant suck, but the G tube would be difficult developmentally for him. I struggle with whats better, more hospital time and a tube, or more time being a kid away from hospitals. We won't let him starve (we visit a doctor weekly to check his health).

We are very careful with cooking temperatures in food. My husband checks his food with an internal thermator to see if it's at the healthy temperature (I can't remember but I think it's over 200 that kills bacteria? but he knows) and again, we did run this by our doc. We don't give him some things raw (like fish, or undercooked seafood) and we don't give him many cheeses (like blue) because of the bacteria issues. But that is an important thing to remember and I appreciate the thought in mentioning it.

sjerin, you know the funny thing is he doesn't test lactose intellorent and he's not allergic, but we do have to be very careful about the amount of milk we allow in his diet. I think currently he's exceeded it again (he can have some cheese...like on pizza and he's fine) and I think it's currently due to an increase in his chocolate intake ;( It might be the sugar though, but either way we're taking that back out of the diet (sugar based foods like chocolate) to see if things get better.

The feeding tube thing is awful. Really a great deal of work, he hates it, he's spent so much time in hospital we don't want to take him back, and it's a definate drain on his development, which is already significantly behind due to the first year and a half of hospitalizations. THis sucks, but so does the tube. (And so does my kitchen this week LOL...I wonder if there's a tube option for cabinet salespeople???? I'd stick it right up their...ummm nevermind) :oP

Eastsider, he loves ham. Bacon and sausage he isn't big on, but ham is a staple in the diet, but as with every thing else, it's fun while it's new, but after a few days he gets bored.

Today he took in 18 oz of his needed 38. I've decided to drink the imbalance in wine to see if it helps :oP (Kidding!!!)

I can't imagine going through what you are now. I have a 14 year old that has always been super picky about food and gags at new tastes and textures. He's been this way since he was a baby and ruined our appetites at several meals when he lost it at the table. He is very skinny. Even when he eats things he really likes, it doesn't usually amount to much. My other son is also very picky, but no problem with his weight! I know it has just totally taken all the joy out of preparing meals. No matter what I think would be good for a meal, I always come back to the fact that DS won't even try it. Really bums me out. I give you so much credit for continuing to search for new foods and I have read in your posts that you are up every few hours round the clock to try to get your son to eat. I guess, as parents, we do what we have to do. It sounds like you are doing a great job dealing with all of this. I am curious if your son has been checked for anything like ulcerative colitis or Krohn's disease? I imagine the Drs. thought of that, but wanted to mention it just in case. It definitely messes with your digestive system, causing pain and I believe also inability to absorb some of the nutrients the body needs.
I hope your son will outgrow this soon. He is such a cutie. Good luck to you.

igloochick-- just wondering how your son is doing. Hoping things are better now.

Almost nothing to add after all this, but I will second the bread dipped in EV olive oil idea -- nothing to bother his tummy (I think), lots of calories, no dairy, no extra protein (sounds like he is getting more than enough of that!). My kids love good sourdough bread dipped in EVOO (and so do I!)

Obviously, I can't imagine what you are going through and pray that he pulls through this just fine.

What about olives? Calorie rich, full of flavor.
And nuts. Salami & pepperoni.
Mine used to love *any* food that could be put onto a toothpick.
Is he old enough to handle toothpick foods safely?

Re the milk -- Could he be sensitive to casein? Mine is, and if so, you may also want to have him tested for sensitivity to gluten, the primary protein in wheat. They often run together...

We did try the gluten tests (we thought he had celiac disease at one point) and all was negative. He likes to confuse us that way.

Now this all dosen't matter. He eats nothing. He has no interest at all in solid food and only uses the bottle for his daily nutrients, and on that he's sometimes great (he did wonderfully a couple of weeks ago and had a great weight gain) and today he's had 12 oz of his 38 oz goal.

I learned about a progarm called a Feeding Program this weekend. We're going to see if we can get him into the best one (Kennedy Krieger in Maryland). If we're accepted we'll be there for approximately 8 weeks. Not a fun vacation but if it works, we're game. They specialize in kids who have lost all ability to recognize hunger. We'll hope to be approved for the program, (we hope to go for our evaluation in late November) and then we wait four or five months on the waiting list to get in.

I had hoped to be done with hospitals, but I guess we start round two now :o(

Oh no! I'm so sorry to hear that...
Does his disorder have a name?
Or is it the dreaded SWAN (Syndromes Without Names)?

I've never heard that "SWAN" but really that's it! They nickname it "Happy to Starve" in gastro school (per my gastroenteroligist) And many call it "Putnam's Syndome" but that's just a nick name as well given that Dr. Putnam has spent so much time analzying kids with this problem. They tell me it's a great deal like when you're told your child has died of SIDS. There is always a reason children die, but systemically they can't find the reason and so you get SIDS. With us, we got Putnam's or SWAN I guess (Dr Putnam is our doctor as well) :o(

Eating disorders normally happen with children who have special needs, like autistic children, children with brain disorders, etc., but we don't have any of those problems so the fun part of this is dealing with insurance companies for treatment, when he has no official disease (his actuall diagnosis is Fail to Thrive without reason). The insurance companies seem to want him to go ahead and "Fail" and we insist that isn't the route we want to go.

I learned abut the Kennedy Kreiger clinic on feeding disorders and while reading realized they were describing my child to a T! They do work with kids with much more significant issues involved in their eating problems (ie cleft pallet or inability to swallow etc) but they also have a place for the Jesse's of the world who just won't eat because it hurts.

Somehow we need to figure out why it hurts before we begin treatment....that's the hard part. But fortunately we're going to do more poop testing first, instead of anything that will hurt him.

Thanks for SWAN. I'm going to have to keep that on the tip of my tongue because I'm tired of having to explain this over and over and over to people who want to hear a name fancier than "Happy to Starve" (Which actually fits him to a T as well)

It's so frustrating when you can't even do a Google search for answers! (I have a SWAN kid too, though 'officially' he's either autistic or PDD-NOS, developmentally delayed, apraxic with seizures and miscellaneous -- suspected genetic disorder, but not one of the 4,000+ that they've tested for.) Mine is intolerant to gluten, casein, soy and eggs, and has the exact opposite feeding problem -- he'll eat absolutely anything and has no 'full' sensor. (When he was a baby, we used to call him "All Gone John".)

Is your son able to talk yet? Or do you sign with him? (It's amazing how capable even some of the very young children are communicating with sign!) I'm just wondering how much information he is able to give you about why eating is so unpleasant for him. And of course, at this point, how much is physiological and how much is behavioral since it's always been such an issue.

Well - All I can say for sure is that he's very lucky to have well-educated, capable and determined parents with the resources to get him the best medical care. Please let us know how you and he are doing --

He's a bit delayed language wise because of his earlier illness. He just didn't progress with any learning (or playing or anything else) until he was about 15 months old. He's now signing some and he's picking up a vocabulary (speech) as well with new words added daily. He isn't up to combining words or descriptive words yet, but he's doing much better since we started PIC.

His cognitive understanding is way behind, so explaining why or what hurts just isn't possible with him. He's also now 100% averse to food, so I don't know if he could share anything since he's not eating anything at all.

I feel for your little All Gone John! I had a child like that in the room near us when we were trying to teach Jesse to eat at 11 months. His mom had a hard time...maybe harder than me, because he wanted to eat everything, and choked quite often because he was wolfing it down so fast. They handle kids like that at feeding clincs as well, but that is easier to handle I think (I might be wrong) so you hear of less of that (since you can hide food etc).

His small motor skills are fabulous, quite above his age group and his problem solving ability is off the baby charts (which is a pain for his parents LOL) but we know from that information that his little brain is ready to learn :) and totally capable. We just want him to get enough food in him so that he dosen't suffer long term brain damage from lack of nutrients (which does happen).

I'll keep you informed. You've obviously been down the route we're traveling. I feel for you in a way many others can't. It completely sucks to not have the answers you want. I hoped at times for even a bad answer...just an answer so we could move forward and fight whatever it was. Big Hugs!!! (As the teletubbies would say)

And yet you take the time to help me with my silly kitchen problems. You are a trooper.

I accidentally ran across this link and was enthralled and read the whole thing. Sorry to hear about Jesse's health problems, must be horrible to for you. My daughter liked the Gerber (I think Gerber) Fruit Puffs and she liked a souffle type thing I made with egg, pumpkin pie filling, spices, baked, then topped with butter and syrup. I'm going out on a limb here, sorry if this is annoying, has Asperger's or Autism been suggested, or is he too young to even wonder about such a disorder? I thought of that because you say his language is delayed but his fine motor and problem solving abilites are so good. Anyway, he'd be a great astronaut some day I bet. Hope things are looking up, Amy

You're not out on a limb at all Amy, he was tested for both Aspergers and Autism and came out "clean". One of the traits of an autistic child (they're learning now) is that they love to be in their crib, and tend to play alone or sleep a lot. During the first year when he never slept more than 15 mins at a time (literally) I would probably have paid for just a touch of selective sleep autism :)

They thought he had Asperger's at one point (and also Leukodystrophy) so we went to see a very wonderful child neurologist in Denver. (I think that was where we did that...we've been all over the country) anyhoo, he had many tests, brain scans, function testing, etc., and all was well there. It was nice to "check" that one off the box, but it was at a time when we almost didn't care what it was...we just wanted a name :(

His speech is making huge leaps and bounds since we've been in PIC. And this week he showed us he recognizes some letters and numbers (he selectively picks them out and tell us O and X and 3 or 5). So he's making good progress now :)

Daddy is a chemical engineer. I was a banker...the danged kid is doomed to have a mathematical brain :oP Poor thing! Fortunately I also excelled at BS...so there is hope yet for him to have a normal life if he picks that up as well!

That's good to hear Igloochic! Whatever you can rule out has to be a relief. And that he's picking up language so well speaks volumes for his development.

I'm surprised it's taken 'them' so long to figure out about autistic kids liking to play alone and sleep a lot. It was one of the first things we noticed about our little guy -- he was perfectly happy to be 'parked' in his car seat for hours at a stretch. Not that we did it, of course! (OK - we did while unloading groceries.) We really had to 'get in his face' to get him to interract, and our idiot pediatrician said we were just lucky to get such an "easy baby"...

Hi Igloo, has your DS been checked for Celiac disease? Most of the people who have it are lactose intolerant or *somewhat* intolerant to milk products. It's worth a try for him to be tested~I don't have a clue how the procedure is done. Get on line and do a bit of reading.

My 17 month old GS loves black beans with sour cream on the top, as does my 11 month old GS. They also both love my chicken and dumplings, but NOT good if it's Celiac. Cream of Broccoli soup or Tomato soup with lots of crackers. A sweet potato, baked in the micro, with lots of brown sugar and butter. A warm roll with LOTS of butter. Oatmeal with cinnamon and brown sugar. Cinnamon toast(lots of butter).

Your little guy sure is a cutie, and looks to be full of energy! Best of luck in getting him to try some new foods.

My kids like very simple food

Oldest son likes: whole wheat bread (not toasted), hard cheese, grapes, broccoli, chicken (white meat - baked), cheese
pizza, french fries, chicken tenders, cheese crackers

Youngest son likes: Crescent rolls, popcorn, chicken (white meat - baked), most fruits - melon, grapes, apples, berries, watermelon, and vegetables - broccoli, cauliflower, beans, tomatos, corn. Also, Yogurt, soft pretzels, pork chops.

For dessert they both like Hershey chocolate bars and M&Ms.

Hi igloochic - just was checking in here to see how you/your son were holding up lately (better than your kitchens, I hope!!) - as I was reading this, it occurred to me that I never mentioned to you what they put my son on after his coma from the Encephalitis....he's always been a tiny thing, too - not a huge eater but has some adult tastes (will eat an entire family size Ceasar salad, go figure!) - tends to gag on meat, etc plus his brother is allergic to fish and nuts so we just don't have any of that in the house which is a bummer since they're both great protein sources. Eggs work but not all the time.

Anywho...the last visit with the neurology/pulmonology/endocrinology group put him on "ScandiShake" - when you mix it w/ 8 oz of whole milk, it give them 600 calories! It's especially calorie-rich just for weight gain and it's Gluten-Free - it's safe for the kidneys (unlike other major protein sources) and it comes in various flavors. Both he and my oldest started on these and FINALLY put some weight on - not much but hey, it got him out of the 5th percentile!

Also, I know you're probably sick of hearing, "Have you checked him for...?" BUT I can't help but wonder about Metabolic Cystic Fibrosis - it doesn't engage the pulmonary systems (lungs) like regular CF but essentially it's a mucus problem in the intestinal and stomach lining which not only makes them feel like they're not hungry or don't want to eat, but also prevents them from absorbing what little nutrients and calories we do manage to get down them. We ended up being negative for it but for awhile I almost hoped it's what his problem was so that we had some sort of answer. Just a thought so I'm throwing it out there!