Re: Help please with eating issues

May 27, 2010

Ah, this brings back memories. My son is now 18, healthy size, a bit pudgy at times, but we were where you are at that age and a bit beyond. Those were very difficult years. Below, I've listed the three things that we believe helped remedy this issue the most that I wished I'd known early on.

Gaylen

1) Address digestive issues

My son had an ongoing problem with cycles of constipation and loose stools, and often developed overgrowths of some pathogenic bacteria and yeast in his gut. Identifying and treating these helped him feel better which led to better eating. Proteins are heavy and tend to make you feel worse if you're not digesting food well. Starches sometimes help you feel better temporarily if you're bloated or have indigestion. Adding digestive enzymes and beneficial bacteria can also help with this.

2) Investigate Periactin

This is a drug that has been used safely since the 1960s by gastro docs for food allergies that lead to gastro issues. In some people, it stimulates appetite. After years of not wanting to eat and weight loss so bad that one relative wanted to turn us into CPS because he was so thin, my son suddenly started eating again two days after starting this drug. He hadn't gained more than a few pounds in five years but gained 20 lbs within six months of starting this drug and normalized his weight after a year. Many of our kids don't eat well because they don't feel well due to allergy-related gastro issues.

3) Trigeminal Stimulation

The trigeminal nerve, which goes up your face, regulates neural excitement in your body. Ongoing, regular stimulation of this and up into your cranial area can reduce overall excitability. To stimulate this nerve, lightly tickle/touch/rub all over the face and head for a minute, followed by deep finger pressure to the same areas. Some people are so sensitive that they can only handle a second or two of the light touch, but I've never worked with a sensory-disorder kid who didn't love the deep finger pressure in these areas. If needed, start with a second or two of light touch followed by longer deep pressure and gradually build to a full minute of each. Doing this at least 3 times a day (we did it six times a day for a little over six months before my son started accepting different textures) can greatly reduce overall sensitivity.

May 27, 2010

Appetite was never an issue for us before we took away casein. My two year old

son could eat as much as his 13 year old sister. Even when he was an infant, he

was a big boy. He was 24 pounds at 4 months, 30 pounds at a year, 37 pounds by 2

years. Now, at 2 years 7 months, he's about 32 pounds. He's steadily lost

weight, and although he still looks healthy, if he keeps losing a pound a month,

he won't look healthy for long. Weight might not be an immediate issue, but

general nutrition certainly is.

We were working on yeast and bacteria with an antifungal (ketoconazole) and an

anti-bacterial (metronidazole), and he'd been taking each daily for 3 months

when he got the flu. Since he was barfing all over the place, trying to force

feed meds seemed like a bad idea, and we stopped them. I figured that would be a

perfect time to have his levels retested, since it had been months, and I wanted

to see something that showed some sort of improvement in his body that would

justify the fact that I was pinning my son down daily and forcing the meds down

him. (Again, with the texture issues, he hates anything soft and mushy, and the

only thing he drinks is water, so even flavor was an issue). Of course, getting

anything out of the nurse at Dr. Rao's office is proving to be impossible, and

now that it's been 6 weeks of complete nonsense while waiting for a simple

freaking lab requisition form, I'm sure that any progress we had made with

regards to the yeast and bacteria overgrowth is now down the tubes. I really,

REALLY dislike that nurse. If we weren't completely broke, I would never

consider working with that office again. There have been way too many mistakes

made and phone calls ignored. Anyway, after calling the lab myself to see which

boxes to check off on the blank requisition form they sent me (again), we'll be

collecting a urine sample Tuesday morning, and should know something in two

weeks. Then I'm going to need to find a reputable lab who can fill the

prescriptions, and assure me that they're gf/cf and the right dosage (Abrams

Royal gave us the wrong kid's prescription the last time around, as directed by

Rao's nurse.) Ok.....waaaay off topic.

I'm going to look at Trigeminal stimulation. really doesn't like having

his face lightly touched (it's the only part of his body he feels that way

about), and he doesn't love having deep pressure in his face either, but doesn't

seem to hate it. I'll certainly give it a whirl. My O/T is on vacation for the

next two weeks, but I'll also see if she can get on board with it. She's been

doing a lot of different sensory things with his arms and legs, and I asked her

about the feeding issue today. She said that she'd speak to a few of her

colleagues and get back with me.

Thank you for your suggestions Gaylen!

Serena

>

> Ah, this brings back memories. My son is now 18, healthy size, a bit

> pudgy at times, but we were where you are at that age and a bit beyond. Those

> were very difficult years. Below, I've listed the three things that we

> believe helped remedy this issue the most that I wished I'd known early on.

> Gaylen

>

> 1) Address digestive issues

> My son had an ongoing problem with cycles of constipation and loose stools,

> and often developed overgrowths of some pathogenic bacteria and yeast in

> his gut. Identifying and treating these helped him feel better which led to

> better eating. Proteins are heavy and tend to make you feel worse if

> you're not digesting food well. Starches sometimes help you feel better

> temporarily if you're bloated or have indigestion. Adding digestive enzymes

and

> beneficial bacteria can also help with this.

>

> 2) Investigate Periactin

> This is a drug that has been used safely since the 1960s by gastro docs for

> food allergies that lead to gastro issues. In some people, it stimulates

> appetite. After years of not wanting to eat and weight loss so bad that

> one relative wanted to turn us into CPS because he was so thin, my son

> suddenly started eating again two days after starting this drug. He hadn't

> gained more than a few pounds in five years but gained 20 lbs within six

months

> of starting this drug and normalized his weight after a year. Many of our

> kids don't eat well because they don't feel well due to allergy-related

> gastro issues.

>

> 3) Trigeminal Stimulation

> The trigeminal nerve, which goes up your face, regulates neural excitement

> in your body. Ongoing, regular stimulation of this and up into your

> cranial area can reduce overall excitability. To stimulate this nerve,

lightly

> tickle/touch/rub all over the face and head for a minute, followed by deep

> finger pressure to the same areas. Some people are so sensitive that they

> can only handle a second or two of the light touch, but I've never worked

> with a sensory-disorder kid who didn't love the deep finger pressure in

> these areas. If needed, start with a second or two of light touch followed

by

> longer deep pressure and gradually build to a full minute of each. Doing

> this at least 3 times a day (we did it six times a day for a little over six

> months before my son started accepting different textures) can greatly

> reduce overall sensitivity.

>

May 27, 2010

Irma, our new O/T came highly recommended by our old P/T. Our old P/T (who we

lost when the facility closed recently) specialized in sensory issues. The O/T

is through ECI, but seems to have picked up where the P/T left off, and is doing

lots of sensory exercises with him. She's even trying things that the P/T

hadn't. has only worked with her twice, but immediately liked her

because she met his sensory needs. He worked well with her throughout the hour,

never trying to leave the play room, even though she comes pretty late in the

afternoon, when he would have been napping otherwise. He is asleep before she is

finished filling out her yellow ECI sheet. LOL

Thanks for all of the great links, Irma!

>

> >

> > Irma, we do have an O/T, he does have sensory issues, but we just started

> > with this O/T (last place closed), and haven't spoken with her about doing

> > anything with regards to his feeding issues. She's here today, and I'll see

> > if she has anything to offer.

> >

> > , his behavior is definitely not linked to behavior. He's always

> > thrown food, mostly to avoid having it in his hands. It's all about his

> > displeasure for the way that something feels, and never about attention. If

> > I believed for a second that he'd stop if I just ignored it, I'd ignore it.

> >

>

May 27, 2010

Hi Serena,

Our son had many of the same issues and lost weight too. We went to the CARD

feeding clinic in Austin for a week long intensive feeding program and it has

made a huge difference. He will now eat what we ask him to, and gained 20

pounds in 1.5 years. Truly a miracle for us and takes all the stress out of

mealtimes.

Highly recommend you look into their program.

Ann

May 27, 2010

Ann, I'm going to look into that right now. Do you mind if I ask you how old

your son was when you attended the program, and how long ago it was?

Serena

>

> Hi Serena,

>

> Our son had many of the same issues and lost weight too. We went to the CARD

feeding clinic in Austin for a week long intensive feeding program and it has

made a huge difference. He will now eat what we ask him to, and gained 20

pounds in 1.5 years. Truly a miracle for us and takes all the stress out of

mealtimes.

>

> Highly recommend you look into their program.

>

> Ann

>

May 27, 2010

We were one of the first clients in Dec 2007, he was 6, almost 7. I know they

have worked with kids of all ages and I think it gets harder when they are

older. I feel so fortunate that he overcame his eating behaviors with this

intervention.

Ann

> >

> > Hi Serena,

> >

> > Our son had many of the same issues and lost weight too. We went to the CARD

feeding clinic in Austin for a week long intensive feeding program and it has

made a huge difference. He will now eat what we ask him to, and gained 20

pounds in 1.5 years. Truly a miracle for us and takes all the stress out of

mealtimes.

> >

> > Highly recommend you look into their program.

> >

> > Ann

> >

>

May 27, 2010

I couldn't find the direct number for the feeding program on the CARD website,

but I left a message at the general number. I'll try again tomorrow. Fees

weren't mentioned on the website either. Any chance you could fill me in on what

we might be looking at? (You can email me directly if you want.) We're in the

Dallas area, so there'd be travel expenses involved, and although I can say " I'd

pay anything to..... " well, there's only so much we can actually afford. Still,

I want to know more. If we could actually get to eat any type of food,

it would really improve the quality of his diet SO much, and I could even look

at eliminating more bad things because I'd be able to add the good stuff. I love

the idea of doing an intensive program, because as it stands now, our ABA

consultant is telling us that it may take up to 6 months to add one food item to

his diet. I know that some things take time, but I don't want him to be on this

kind of a lame diet for long, without any protein or vegetables. It's just not

healthy.

Again, thanks so much for the information! Hopefully, I'll hear back from them

tomorrow.

Serena

> > >

> > > Hi Serena,

> > >

> > > Our son had many of the same issues and lost weight too. We went to the

CARD feeding clinic in Austin for a week long intensive feeding program and it

has made a huge difference. He will now eat what we ask him to, and gained 20

pounds in 1.5 years. Truly a miracle for us and takes all the stress out of

mealtimes.

> > >

> > > Highly recommend you look into their program.

> > >

> > > Ann

> > >

> >

>

May 29, 2010

Serena I totally get it. First of all, they look gone and look as if they have

no receptive skills, but actually they understand quite a bit. They show no

sign of understanding so we assume they don't get it.

Anyway this is where ABA came in for us. We used Spectrum of Hope on 290. I

combined what I learned being a teacher, ECI, and learning ABA to create a

system with my son.

I used a lot of pictures.

I made a FIRST THEN chart. Before I even taught my kids about food...I just

started with other items to teach first~then.

Draw a line down on a piece of poster board. Make a first then heading on each

side. Put a cover of his favorite dvd or whatever motivates him on the THEN

side. Choose something that he can do first on the first side.

I had one person stand behind my son and physically show him what to do

First.....then Yippee we can have the THEN side. It took much repetition with

my son...gee whiz dozens of times for the simplest of tasks. But as soon as we

made this routine.....we could accomplish all kinds of things.

We never gave in. As soon as he started to get the hang of say bringing us his

shoes, we then expected this everytime.

He never got a cup, a snack, a dvd (the only things that motivated him early on)

unless he attempted verbal communication with us. Well first we worked on

pictures etc.....but as soon as he had that mastered we moved to looking at

mommy and making a sound....any ole sound. ahhhhhhhhhhhhhhh could have been

his sound for play on the dvd. YAY we'd celebrate and then put it on.

However we'd push pause and train his brain to make sounds for what he wanted.

Once he was comfortable with this....we expected the next step. Now he would

have to listen and look and step by step teach his brain to turn those sounds

into words.

It took him 500 times the work to do something a typical kid could just

instantly do.

However once we got a system in place and could start cleaning up the

diet......he became less inflammed...less infected and then we didn't have to

work so hard. About a year into Body Ecology Diet things just started to get

easier.

Hope this helps. Trust me....I understand the hard part you are in. But I

believed in myself and my child and wouldn't settle. I had no friends, no

life......it was full time. But step by step we found a system. I have some

of it video documented. I had a newborn baby too so it was hard to get footage

of everything.

All the best

> > >

> > > Hi there. My son is 2 1/2 and has always had texture related eating

issues. When we first tried baby foods, he would spit them out over and over

again until the pediatrician recommended just moving to finger foods when

was about 8 months old. We've been casein free because of test results

for 4 months, and just went gluten free about 4 weeks ago. 's eating

issues (no pureed or slimy or cold foods) are compounded by a restrictive diet.

He doesn't try new things, so with each new restriction, it just cut down on the

foods he's eaten without adding anything new or healthy to his diet.

> > >

> > > So....here's my current dilemma. The only meats he was eating were

meatballs (which he just won't touch anymore unless it's to throw them on the

ground), and chicken nuggets (which we've been breading ourselves in rice flour

for 4 months). Besides the eggs in the morning, there's just no other protein

coming into his diet. So a couple of weeks ago, he started picking pieces off of

his already bite size pieces of eggs, and then throwing the rest. He's down from

about 2 eggs each morning to maybe 1/2 of an egg....maybe. The chicken situation

is worse. He's now just picking the breading off of the chicken and then

throwing the chicken itself. Once the chicken has no breading, or even little

breading, he won't touch it (except to throw it). This diet is quickly becoming

a rice/corn/soy diet, and I have no idea what to do about it. I tried holding

one of his hands while he ate so that he couldn't peel pieces off of the

chicken, and he just bit a piece off of the breading, and then managed to shake

the rest off with one hand. I could sit him in the high chair all day, and he'd

just cry and get down.

> > >

> > > I don't want to starve him until he gets desperate enough to eat again,

but I can't allow him to just keep eating a diet of corn, apples, gfcf cereals,

pancakes and french toast. Before going cf, he ate so many different foods, but

there's no going back with that one. His chicken and eggs have remained constant

for the past 4 1/2 months, and I just don't understand why he's going to decide

now to stop eating protein.

> > >

> > > Does anyone have any suggestions for getting a child with texture issues

to eat??

> > >

> > > Oh, and as a side note, his sensory issues are rapidly spinning out of

control, with an increase in stimming that just makes me sick to my stomach.

*sigh*

> > >

> > > I'd really appreciate ANY help at all. Thank you!

> > > Serena

> > >

> >

>

May 30, 2010

Haven I reread your post. A principle in body ecology that we did for about 4

years is food combining. So no bread/grains with meat. So a breaded chicken

nugget is out. Not saying this is the right way, I mean I don't follow anyone

like a cult.....but this step proved huge gains for my child over the months.

You might put chicken in the food processor, and add some grapeseed mayo

(veganaise purple label), add salt/herbs. Scoop this out and form little

nuggets with your spoon. I use coconut oil to grease pan. We strive to avoid

aluminum, so we bake on glass baking dishes.

It's really fun spending 5x as much $ and cleaning 35 dishes just for your kid

to have a chicken nugget meal. My son calls it " healthy Mcs. "

What you'll want to work up to is 80% vegetables with each meal. So 20%

chicken nuggets with 80% cultured vegetables.

It takes time, it took me about 9 months to learn how to prep food this way and

get my kids to do it. Once we got it down, we did it strictly for a few years.

What I find is that us creative moms try to come up with recipes that will

please the kids or mimic our old favorites. Typically these have sugars in

them. Honey, agave, bananas are still feeding infections. Basically we try

and take the best ingredients we can to come up with foods they'll take. Well

they are sick...immune problems and they are craving anything that will keep

infections active. So our good attempts keep them in autism, OCD etc.....

If you can get to this strict level of diet yourself you'll see what happens to

your own body. You'll likely break out in a rash, have serious cravings, moods

etc....The fact that the diet is so challenging is exactly why it will create

change for an affected child. It's eating the way our ancestors did.

If you do take all the favorites away, the flours, fruits, and processed treats

you'll need to have lots in place to keep your little addict busy. Just like an

alcoholic, they'll be looking for their fix all day long. I used to cry in my

kitchen so exhausted trying to come up with one more meal. For us it really

took removing everything from our house. Changing everything about your

social life for a time.

We are no longer strict, but my kids are doing really well. We just apply BE

principles to our GFCFSF diet. I just do the best I can each day to juggle it

all. My husband just gave them a bowl of hot quinoa and he stirred fruit into

it. This isn't Body Ecology and I wouldn't have allowed this for a few years

in the beginning. Now I'll just be mindful that the next snack or meal isn't

sweet. I'll make sure they have a plateful of cultured vegetables with protein.

If we go to a party, we now allow a GFCFSF cupcake that we take along, but that

night we make sure the dinner is something simple on digestion and low in

sugar....maybe a soup.

Once you start taking steps you'll see your son go through changes and this will

help you to determine if you should keep going. I don't follow anyone like a

cult. No one has all the answers. However if diet isn't working I take a

closer look at what's really going on rather than say it didn't work for us.

For example blue corn tortilla chips are allowed on Body Ecology with cultured

vegetables....but my son didn't get these for several years. Just because it's

legal doesn't mean it's good for our kids....watch your own kid and in

autism...I think watch for cravings. Once an herbal tea with stevia is

satisfying you know that infections are being managed by a healthy immune

system. When one is an addict looking for a cracker, or cookie or bar.....it's

time to take a closer look. We don't want to excess on anything....not meats,

fruits etc....this is a problem I have with SCD. The kids load up on nuts, and

fruits/honey, and meats. Very creative recipe, but the kids still develop

strange food addictions.

All the best

> >

> > ,

> >

> > Every time I read your posts about Body Ecology, I just get excited about

> > it, but I need advice on how to move from just gf/cf/sf to Body Ecology.

> >

> > My son improved a great deal on gf/cf/sf and biomed, but as you write --MY

> > son IS a chubby kid, and he still has a lot of immune issues, and I have

> > LONG suspected it is about his diet and I need to do more.

> >

> > I feel sometimes I am on this wheel running aback and forth between trying

> > to do right medically and then turning around and having to give all my time

> > to educational advocacy, and when I do one the other suffers. But this year

> > (from now through summer and the next school year, it is critical that I

> > change so much. So I'm going to Whole Foods today. What do I buy to get

> > started?

> >

> > What is a green smoothie? I normally buy cabbage, cauliflower, beans,

> > spinach, and parsnips and yes, he has gotten some corn too --these are the

> > only vegetables I can get him to eat besides potatoes, which we've all but

> > eliminated from his diet. Are you saying we cannot use tapioca flour?

> >

> > We normally use tapioca, rice, and arrowroot flours. My son cannot have

> > broccoli as he will break out in hives. What meats? Is any kind of breaded

> > chicken (we use egg and tapioca flour) out of the picture?

> >

> > We rotate fats (oils). We use olive, grape seed, and avocado. My son loves

> > avocados too. My son loves fruit, but no fruits are allowed? For snacks my

> > son has had the bars made by Enjoy Life foods and he likes these gf/cf/sf

> > turkey sticks we found. I know to buy some coconuts and drain the juice and

> > get the starter culture from the web site but what else to get us started?

> > I still want to remain gf/cf/sf as I know my son's behavior is strongly

> > affected by this. If he gets any of these proteins he turns into " Mr.

> > Hyde. "

> >

> > My son will eat organic beef, turkey, chicken, lamb, and pork. We grill,

> > saute', bake. Can you help us get started, and do you think a ten year old

> > will still benefit? I wish I had heard of Body Ecology when he was two, but

> > all I knew about was gf/cf/sf.

> >

> > Thanks,

> >

> > Haven

> >

>

May 30, 2010

Just wanted to add there are other sources of protien, besides meat. Rice/beans

make

a protien. Thats brown rice, not white rice.

Millet grain, is Gluten free, and you can make a nice hot cereal with rice or

Almond milk.

and it has protien. Almond butter on rice crackers or rice bread - protein.

Hummus

which is from Chick Peas - you could see if he likes the peas or mash them up

and

spread them on rice cracker or carrot sticks.

You may also want to start adding small sizes of bell peppers, lettece leaf,

strawberries,

organic grapes, etc.. Just one bite at a time, and it will be a lovely teaching

tool as well

to discuss colors, and which are veggies/ friuts.

Some sensory issues can also be addressed thru Crainial Sacral work, usually a

D.O., or

P.T. may have training in this area.

You can go to the www.Upledger.com sight to find someone trained in your area.

> > > >

> > > > Hi there. My son is 2 1/2 and has always had texture related eating

issues. When we first tried baby foods, he would spit them out over and over

again until the pediatrician recommended just moving to finger foods when

was about 8 months old. We've been casein free because of test results

for 4 months, and just went gluten free about 4 weeks ago. 's eating

issues (no pureed or slimy or cold foods) are compounded by a restrictive diet.

He doesn't try new things, so with each new restriction, it just cut down on the

foods he's eaten without adding anything new or healthy to his diet.

> > > >

> > > > So....here's my current dilemma. The only meats he was eating were