Feeding problems

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Any other parents dealing with an Aspie with feeding problems?

My 7 year old son has had feeding problems since he was a baby. His diagnoses are Asperger's Syndrome, ADHD, Anxiety and Lack of Coordination. He has been labeled Failure To Thrive at different times. He is 7 now, 10th percentile for height and not on the chart for weight. He weighs 38 lbs. We have tried supplements(Duocal, Carnation, Pediasure) and the only one he can handle is Duocal but it stops working pretty quickly. WE have tried dietary therapy(omitting ALL dairy) and it stopped working after about 2 years.

He gets OT through his school district but I'm not sure if they can cover feeding therapy. At this point, it's become more of a control and anxiety thing and I'm not sure feeding therapy is even appropriate. Our doctor recommended not doing feeding therapy a while back because of the control issue.

We see developmental pediatrics in early December and they won't discuss anything with me since he hasn't been seen in a year

His general pediatrician recently prescribed Strattera for ADHD and thought it would help with anxiety, it's mostly only helped with ADHD. He also has chronic hypoglycemia and has had a few episodes lately.

Yesterday he vomited after a super stressful weekend(schedule was off).


Any advice?

Sounds like me when I was 11. I was 60 pounds in 6th grade. Have you tried Carnation Instant Breakfast as a supplement drink? Tastes exactly like chocolate milk. Not like the weird "chocolate milk" that the others taste like, but actual chocolate milk. Also, L'il Critters Gummy Vites are vitamins that taste like gummy bears.

I ended up going to an endocrinologist about my issues, he put me on the Instant breakfast, several supplements, and did a few blood tests.

Hi, I am an AS adult, rather than a parent but I thought I would briefly share incase it might help you.

I have had problems not identifying hunger. Left on my own I forget when it is time to eat until I have a stomach ache. If I am more interested in my activity, it is difficult to stop in order to eat. Bc I am an adult, I can make myself eat at the kitchen table if it is socially important to do so, however if I have a choice I always eat in the living room in the most comfortable recliner chair/rocking chair or on the most comfortable couch. Kitchen chairs are so uncomfortable.

Texture is everything. If you find one he tolerates, go with it. Smoothies, oatmeal, applesauce, pasta is my favorite texture. They make green juice at the health food store that tastes like apple juice but also has green veggies in it. If I can have something with a straw, I am super happy. If my dad bangs his fork or spoon in his bowl, it drives my ears crazy and I want to run out of the room. If everyone would use plastic forks and spoons and bowls it would be easier to eat near them. For example, would he eat a banana sitting on the carpet instead of cereal at the table? It might seem strange but if it is pleasant for him and it can become a routine and provide nutrition.

Sometimes you just have to do what works, I ate eggs for breakfast everyday (at least 5 days a week) for seven years. I didn't explode from cholesterol. It worked for me. I also do not eat milk cheese or gluten for digestive reasons.

I know nothing personally, about specific side effects for the various ADD meds, but I have heard that they do have an effect on appetite, usually positive, but I think I have read that some have the opposite issue.

I went ahead and looked up Strattera, on WebMD.

http://www.webmd.com/drugs/drug-64629-s ... genumber=6

Loss of appetite is listed as a common side effect and nausea, indigestion and weight loss are listed as infrequent side effects. I AM NOT A DOCTOR, but you might want to check with the prescribing physician and discuss this.

I'm an AS adult, undiagnosed - which is not uncommon at my age. I was always somewhat underweight until I got older (40s), and I can tell you what would have helped me.

If I'd simply been allowed to eat whatever I wanted, I would have put on more weight - and had less eating problems as an adult. Even before I figured out AS was what was "wrong" with me, I discovered one long-lasting effect of the way my parents dealt with my eating issues. (The one thing that saved me was when my pediatrician finally told my mother to let me have what I wanted, even if that was a hot fudge sundae for breakfast, because at least that way I'd be getting something in me. But she only partially listened... But at least I survived.)

When I was older, there were things I wanted to try, thought I ought to learn to eat because they were healthier, and so on. And I noticed a pattern. The foods I loathed as a child I still could not eat. Any new foods I decided to try on my own, at my own pace, I usually found I liked. (Not always, but at least 90% of the time). The foods I disliked as a child but was forced to eat I could eat - but only a little and only grudgingly. Being made to eat foods I didn't want at the time either put those foods off limits for me in practice, or made me incredibly picky. (Of those vegetables I can eat, I can only stand to eat them fresh - and by fresh I mean within about 24 hours of being picked.) Even things I was forced to try once were often ruined for me, depending on the degree of force involved. The really annoying thing is that I've figured out I could probably eat most of those foods now - if I had never been forced to eat them. The process of being forced taught me to dislike the taste, texture, etc.

Even with my pediatrician's advice, they persisted in trying to make me eat "healthy" foods. School lunch was a real issue - the cafeteria food wasn't fit to feed to pigs, and I've developed an lifelong inability to eat most things you can carry with you, which gets incredibly inconvenient.

I also wonder if the drugs he's on aren't part of the problem. I've always had odd reactions to drugs, and it isn't that hard to "put me off my food". If I get sick, I'll be at least a thousand times more picky than I usually am, and often cannot bear to eat things I usually like - and if I'm taking almost anything, I either eat too little, or have to figure out what I can stand to eat. The worst drugs of all (not in terms of what they taste like - the stuff I had to take for pneumonia as a kid wins that contest hands down - but in terms of their effect on me) are those that affect my mind. Much as any drug that would be used for ADD would do. He's probably a picky eater anyway, trying to get him to eat will have only made that worse, and it seems a good guess to me that drugs have not just multiplied those problems, but driven them off the scale.

Thank you for your replies. Our pediatrician is saying to let him eat what he wants, which we pretty much are. Part of my problem is his go-to texture is crunchy, and fortunately and unfortunately that leaves most fruits and veggies that he WILL eat, but nothing with substantial calories. I have told him lately that we understand and he can eat what he wants. It seems to help but some days when he is extra anxious(like this weekend he slept at his grandma's due to us attending a wedding), he cannot eat.

I don't know what to do about the meds. The non stimulants are supposed to be best for kids with anxiety and feeding problems, which is why we tried Strattera. We spoke to the ped about it and she recommended just getting any food we can get into him, which we're already doing. She also recommended giving the med at night, which I had completely forgotten about until I just typed it.... Some days that isn't enough. He was barely functioning in school this year before the meds and now he is thriving and the first to finish his work.

I'm hoping that at our next developmental ped appointment we can try a different med.

My son is a crunchy food eater, too. He will put up with some softer foods, but not many. I don't know if this will help, but I can list some foods for you, other than the obvious fruits and veggies, which he might accept or adjust to. I know not all of these are really optimal, but I know what you mean about just getting some kind of caloric intake.

Crunchy french bread, or similar crunchy breads. (I know it is not the most nutrient filled, but there are vitamins in the enriched flour)

Pretzels---(I know, I know, but they are better than chips)

Meats are hard, but your child may tolerate breaded (fried or baked) chicken nuggets or strips. The processed ones are not great but I looked at this as a gateway food.

Grilled cheese sandwiches---My son is not thrilled with "mixed foods" but he will accept cheese containing ones. Your son may tolerate this too. You may even be able to sneak in bits of meat and veggies in there-=--but I urge caution in that.

Pizza is another exception, calzones, etc.

You can also take foods you know he likes, say french fries and try different shapes (oval, but still crunchy) to try to expand what he will accept.

Edited to take into account Plodder's comments:

If your son is not supposed to have too many starches, than obviously most of this will not work. We do not deal with hypoglycemia and hopefully your son's specialists will have more info on this. I was responding based on your child's doctor saying to let him eat what he wants. No harm was meant.

Last edited by ASDMommyASDKid on 12 Nov 2012, 2:30 pm, edited 1 time in total.

I'm not a parent, but I'm hypoglycemic, and I can tell you that those are both very bad pieces of advice if he has hypoglycemia.

I appreciate that when he's not eating at all, you just want him to eat something - anything - but there are certain foods that should be avoided at all costs if he is hypoglycemic. I'm surprised they didn't tell you that. Has nobody explained to you how people with hypoglycemia are supposed to eat?

A lot of medics don't know anything about it. They know all about diabetes, but not hypoglycemia. I have hypoglycemia, and had to research the diet myself. You have to be very careful with starch. Bread, potatoes, rice etc can only be eaten in small amounts, if at all. Ideally you should eliminate them. Sugar is very bad. I'm not saying cut out sugar altogether, but do not eat it on its own on an empty stomach. EVER. Any form of sugar on an empty stomach is poison to a hypoglycemic. It seems counter-intuitive, because people think hypoglycemic = low blood sugar, so the solution ought to be to eat more sugar, but the whole reason for hypoglycemics having low blood sugar is that their bodies produce too much adrenaline (usually due to anxiety). If you are hypoglycemic, sugar on an empty stomach can make you extremely drowsy and in the worst case scenario it can put you into a coma or kill. The whole reason I figured out I had hypoglycemia was because I was dosing myself on blackstrap mollasses by taking a tablespoon on an empty stomach to fix some health problems, and it knocked me out. I felt like I'd taken a sleeping pill. I could barely stand up. My legs failed. I nearly passed out. I had to stop taking it.

My approach to eating for hypoglycemia is to make sure all my meals consist of 1. vegetables and 2. protein. I do allow myself to eat sugary things for dessert but NEVER AGAIN on an empty stomach. I nearly died.

If he is hypoglycemic the best thing you can make your son eat when he hasn't been eating for ages is PROTEIN. If you try and force him to eat starchy things when his blood sugar is low, you could make him very ill. And if you try and give him a sugary drink or a sweet snack or sweet cereal, he might get very drowsy and go into a coma.

Please learn about it! It's important! And please don't listen to advice from people who don't know anything about hypoglycemia. It may be well-meaning advice, but parents telling you "my son eats this or that, you should try it" is not relevant or safe advice unless their child has hypoglycemia as well.

Even most doctors don't seem to understand it. They think "if the blood sugar is low, they must need to eat sugar" and nothing could be further from the truth. When you are hypoglycemic, sugar is poison.

http://www.askdrwolff.com/node/23

Well Plodder, here's the thing.... he only gets hypoglycemic when he doesn't eat enough, so they're not sure if it's truly hypoglycemia like you are talking about or if he's just plain starved himself He gets cyclic vomiting episodes triggered by hypoglycemia. ONLY if he's eaten minimally and over exerted himself the day or so before.

But thank you for the info! My husband does have true hypoglycemia and follows that diet so we are aware, but were never told to feed him like that. Although it does make sense.

Can you fry tofu to a texture he'll eat? (Is tofu an allowed food?) If you start with firm tofu, soak it in a couple changes of cold water, drain and press it, you can cut it into sticks, dust it with whatever kind of flour he's allowed to eat, and then fry it crisp. DS loves the stuff, it's not very challenging in either flavor or texture provided the sticks are small enough. I would imagine you could pack in some calories if he took a liking to it.

Oh dear. I see. Sorry to hear that. His non-eating must be very bad if it gets to the point where he's hypoglycemic. I hope you can coax him to eat.

I think the rules for normal hypoglycemia also apply when the hypoglycemia is due to fasting. How many days at a time does he go without eating? One day? Two days? More?

If he goes without food for too long, he could be at risk of "reefeeding syndrome" as well as the hypoglycemia, so it's very important you feed him the right things and in the right amounts. You have to feed him small amounts of things and let him nibble on them and build his nutrition levels back up again gradually, not all at once.

See here:

http://en.wikipedia.org/wiki/Refeeding_syndrome

(That syndrome only happens in very extreme cases when you've been several days without food, so in the case of your son, it may not apply).

You said he vomited after a stressful weekend. Does that imply the vomiting was caused by the stress? Does he vomit when stressed? If not, the cause of the vomiting could be eating too much too soon when breaking a fast. When your body has not eaten for a while it is a huge shock to the system for you to then go ahead and eat a normal-sized meal. It can't cope.

We're not sure why he vomited. It may have been that his pill got stuck in his throat, stress, etc. He was with my mother in law for 24 hours so I'm not sure what he ate. He also has bad reactions to food coloring. TMI but his poop was bright green which means he had something with bright food coloring and it has made him vomit in the past. So many things it could be....

He usually won't go days without eating ANYTHING, but he could go a few days eating as little as 500 calories a day.