Re: A gentle reminder/feeding difficulties

[Guest guest]

Thanks Sharon. is not too complicated to explain. If we mix anything in

his food, he stops eating. If we leave his food alone and give him something on

a spoon (flavored med or supplement), he stops eating, if we do none of the

above, he still goes through phases where he stops eating, but it is not as

severe. He eats enough to survive and that is it. To give you an idea how bad

it is, I just had to be interviewed by CPS on Tuesday as my neighbor reported me

for possible neglect because he is so thin.

Ironically, prior to dx I used to refer to him as my " gourmet baby. " He never

had any interest in bland baby foods, he wanted spicey calzones and pasta

dishes. He was a great eater! The first thing our DAN doctor put him on was

diflucan. After 10 days on it, he vomited and he has had feeding difficulties

ever since. It has been 2.5 years since then and he has not yet gained a pound,

but has grown in height.

Currently he eats foods a lot of kids will not (broccoli, soups, red/yellow

peppers are a favorite), so his feeding therapists consider him to be doing

well. The problem is he will eat about 3 foods for 4 days (the same 3 foods)

and then he won't touch them. For about a day he eats nothing (his

transitioning day I call it). Then he starts eating 3 different foods, and this

also lasts about 4 days followed by a day of not eating, etc, etc, etc. He

usually eats breakfast, small lunch and next to nothing for dinner. The only

supps he takes are fish oil capsules (loves them strangely enough) and I

recently found a liquid mineral supplement that tastes like water that I throw

in his drink. He responded well to MB12 shots, and I long for an injection to

get everything else into him that easily (we do them in his sleep, and he does

not wake up).

When I hear about the long list of meds a lot of your kids are on, I know my

kid would just stop eating altogether like he has done before when I tried to

give him more than just the fish oil. We actually have had a consult for a

G-tube in case we have to go that route. I will do just about anything to avoid

that.

-

Aut2BMiracles@... wrote:

In a message dated 6/8/2006 5:58:38 P.M. Central Standard Time,

RobRose@... writes:

I know we too would only be able to do a modified , as my son's oral

aversions never have permitted us to do any protocol 100%.

,

We have been there with the oral aversions! My son had MAJOR problems with

textures, visual stimuli (he used to puke from just LOOKING at certain

things. One glance at anything tiny like nerds candy, peas, etc...heaven forbid

a

glance in the dog's dish!...meant he was hurling.). We are one of the long

term families on this list. My son was 5 when we started the protocol

and I can say that things are much better now, but it took time. He went from

eating literally 5 foods (all bad for him) to being the best eater in our

house (age 11). I would say it probably took two years before I could really

say he was a good eater. If there is anything specific you are trying to

overcome, I would be happy to share our experience. Self-preservation has taught

me many tricks to get meds and vitamins in and clean up the diet :-).

Sharon

[Guest guest]

Have you ever tried Seacure? It is a fish-based supplement that Dr

G recommended to us. It has a very strong odor and my son never

took it, but if yours like fish oil it may help.

>

> In a message dated 6/8/2006 5:58:38 P.M. Central Standard Time,

> RobRose@... writes:

>

> I know we too would only be able to do a modified , as my

son's oral

> aversions never have permitted us to do any protocol 100%.

>

> ,

>

> We have been there with the oral aversions! My son had MAJOR

problems with

> textures, visual stimuli (he used to puke from just LOOKING at

certain

> things. One glance at anything tiny like nerds candy, peas,

etc...heaven forbid a

> glance in the dog's dish!...meant he was hurling.). We are one of

the long

> term families on this list. My son was 5 when we started the

protocol

> and I can say that things are much better now, but it took time.

He went from

> eating literally 5 foods (all bad for him) to being the best eater

in our

> house (age 11). I would say it probably took two years before I

could really

> say he was a good eater. If there is anything specific you are

trying to

> overcome, I would be happy to share our experience. Self-

preservation has taught

> me many tricks to get meds and vitamins in and clean up the diet :-

).

>

> Sharon

>

>

[Guest guest]

,

What you describe sounds somewhat similar to my son's history with food

issues. It has been an extremely long, tough road but (knock on wood), things

do

seem to be progressing much better now. After years of barely gaining any

weight, only to lose it again when inhalant allergy season would hit and he'd

get

sick, he's actually put on 11 pounds since last summer. I'll share the things

that have appeared to help the most in hopes that maybe one of them may help

your son.

1) Trigeminal Stimulation -- the trigeminal nerve is an overall regulator of

the body -- any

kid with sensory sensativities -- especially tactile and taste --

could benefit from this

stimulation. It involves a light tickle-touch all over the face and

head for one minute,

followed by deep finger pressure in the same areas for another

minute. Most very

sensative kids need to work up very gradually on the tickle-touch

part but tend to

love the deep finger pressure so you start with a second or two of

light followed by

a few seconds of deep and then go back and forth until you've worked

up to a full

minute of each. You do this several times a day. It often takes as

long as six

months of regular stimulation to start seeing a dampening of

over-stimulation but

at the six month point, my son's eating branched out quickly. This

was after two

years of doing everything we could to get him to eat new foods.

2) Getting gut issues under control -- first, killing off some pathogenic

bacteria and

then keeping constipation under control. The constipation was a

newer problem

that really flared up badly when he started the protocol and

continued until

we found what we consider a miracle constipation cure -- Oxy-Powder.

This is

one of the few things we've added to his protocol since we

stopped working with

Dr. Goldberg so I don't know what he'd think about using it.

However, with a

kid who only weighed 60lbs at age 13 and who didn't eat due to

chronic constipation

that wasn't responding to what he'd recommended, we felt we had to

branch out.

We had him do the cleanse they recommend followed by the maintenance

program they recommend. Since then, he's going regularly again and

has been

gaining weight quickly. Since milk products give him terrible

constipation, I believe

that his constipation on the protocol is most likely due to the

lactose in

some of the meds.

3) Adding enzymes back -- we had stopped these when starting as well

but added

them back in about a year ago. This has really seemed to lessen his

allergy-days

and contributed to his weight gain.

4) Became very deligent about frequent snacks, having him keep track of his

calorie intake

(much easier with an older, higher functioning kid). Rather than

pushing him to eat

a lot at each meal, we encourage him to take a few more bites and

then ask him to

eat more of that meal as a " snack " about an hour later. I've found

that giving him three

things and asking him to eat half of all three or all of two gives

him control and tends

to get him complying a bit better.

Of course, with your son's diffculty taking meds or supplements, two of the

above wouldn't work but perhaps doing the trigeminal stimulation may help with

this issue as well.

Gaylen

[Guest guest]

,

Your son sounds a little different from mine, so I don't know if the same

things will work with him, but this is what helped with us. Connor was very

self-limiting and very orally defensive. It was frustrating to make a nice

dinner for everyone and have to run out to get something else Connor would eat.

A friend of mine with a child with Autism was starting the GFCF diet with

her son and I wanted to try it with Connor, but I thought, " What would he

possibly eat? " . He was only eating about 5 foods at the time and all of them

contained gluten and casein. He would eat enough of those five foods to do

" okay " , but gagged, vomited, or just refused when anything else was introduced.

We were doing an ABA program at the time, so I took on the feeding with the

same type of behavioral approach. For us, taking away the foods he was " stuck "

on was key. The only meat he really ate was Mc's chicken nuggets (if

you can call that meat). I started making my own chicken nuggets and faded

out the coating over time. I found a lot of replacements like that and it

seemed like once he got used to one thing like that he eventually just started

branching out to others (like hamburger, steaks, etc.). This took a long time

though. Whenever he got stuck on one particular food, I would get

suspicious, because it always seemed he was drawn to the very things that

didn't agree

with him. I initially replaced the casein with soy products, only to find

out that he really reacted worse to soy than to casein.

Now (6 or 7 years later), Connor is the best eater in our house. He loves

salad and baked potatoes, any kind of broiled meat, fish, chicken, etc. Still

not a big vegetable eater, but he will eat raw carrots and a little broccoli

if it is not too soft (doesn't like it mushy). Loves fried eggplant. We

went GF/CF for several years (and I think it helped), but I find now that he

does okay on just the " do's and don't's " (Dr. G's list). He also still can't

eat soy or corn (eosinophils go up). The food panel that Dr. G ran in the

beginning was helpful also in knowing what to avoid.

Meds were a challenge. We had some puking in the beginning. I initially

would hide things in ice cream or yogurt (these are better at covering up the

taste than applesauce, but we eventually found those, even the replacement

versions, weren't the best for him allergy-wise). He knew they were there are

would try to refuse or gag but we just stayed persistent. If he did throw up,

I wouldn't try to give the same dose again. I'd just wait until the next

dose and try again. Luckily we usually only introduced one med at a time, so

even though he eventually was taking several meds, in the beginning it was

only one, so easier to manage. He still doesn't swallow pills, so all meds go

in unsweetened applesauce now. He knows the meds are in there (he is 11), but

he still takes it three times a day. We haven't had the puking in many

years thank God :-). With persistence, the whole problem of getting the meds

into him didn't take as long as I was afraid it would. We were very matter of

fact about it and he got used to it.

Now we have a unique opposite problem. He doesn't seem to know when he is

full. I pretty much have to set the limits for him. Don't know how to combat

this one.

It's interesting that 10 days into your son being on Diflucan (which would

be prime time for die-off), he developed this problem. It really makes me

wonder if yeast is playing a big role????? I wonder what would have happened

had you been able to make it through the 3 or 4 weeks of die-off?????

These are complicated kids.:-)

Sharon