Re: sucking- oral stim or saliva enzymes? OT Gerald

[Guest guest]

Gerald,

I am very interested in increasing my son's quality of nutrition. I

listed some of the foods that he reacts to that we have trialed very recently.

You should also know that on top of all that I listed in a previous post, he

also reacts to gluten (absolutely!), soy (throws up next day), rice (horrible

eczema), amaranth (same as gluten), flax (even oil), corn (same as soy), all

beans (horrible bowel problems)buckwheat, millet, quinoa, sorghum...so we tried

a root flour diet (either very expensive or more work then SCD). He very

quickly began reacting to ALL of them. I didn't mention all these starches

since they are illegal and would be a " given " on this board. I need no more

evidence that he has polysaccharides malabsorbion and gut bugs that, at this

point, are really hungry right about now. I don't fuss over legality (as you

implied replying to others) simply because I was told to do the diet. I can't

imagine anyone doing this diet blindly obeying legality without

valuing the amount of research behind the diet and coming to the point where

they know they need to do SCD.

My son's " poor nutrition " is certainly not due to SCD. SCD is designed to

heal his gut and restore his gut flora. Only 12 weeks in and his sleep is so

much better (all of a sudden dropped his naps), his behavior is the best ever,

his eczema is the best ever and it's winter!, and my daughter is gaining weight

really well after 8 months of dropping on the growth chart. I would love though

to add to his diet. If you know of a food/supplement that does not contain any

disaccharides or polysaccharides or anything that he reacts to that might help,

PLEASE let me know. I would really appreciate it.

Thanks,

Gerald Fleissner geraldwellbiz@...> wrote:

Hi !

Thank you for answering to my questions! Well i can exactlly tell you what's

going on in the body of your boy!

Poor nutrition!!

Does anyone have any insight on this? Is this an oral stim? I always

figured that his body is trying to get more enzymes from his saliva. Does this

make sense? We have been slowly working our way with HN enzymes and no effect

on this sucking.

You are right with your worries about enzymes for your boys body.

But the problem is not getting more enzymes! You need to begin to work on the

foundation of your boys problems first.

This is where everything is starting!

You need to know not more enzymes, you need, for your boy, an other

constellation of what he needs to eat, that's the key, to his furture!

I know exactly why you have problems with your boy!

Why? Because i had lots of cases like you have with your boy. It's just

getting the right foundation and please, think about that:

You don't need lots of different supplement containers and boxes, just the

right foundation and add proper special food to it, then your boy will change

his health with no problems, for your future.

I know how, but if you want my advise i don't know!

All the best to you, and to your family!

Gerald

Carr carrfamily4wh@...> wrote:

Thanks for you interest Gerald.

What do you give your children for breakfast?

Every day they have homemade pork or turkey sausage, pear sauce and sometimes

there is a banana pureed in also. He has a " true " allergy to eggs and will not

eat any fruit unless pureed due to texture issues.

And do they have every morning the same?

Yes.

What does they have for lunch and dinnertime?

He only eats Chicken, Beef, Pork, Turkey, Squash, Avocado, Zucchini.

Sometimes Carrot, Pumpkin, or Broccoli all of which there is no reaction but

broccoli he will eat well one day then not the next so he has it in small

quantities. Carrots and Pumpkin no reaction but he does not like at all. I

sneak them in his pureed jar and the next day before feeding him he'll say " No

carrots " . This strong of a dislike has been an indication of problems before.

I don't know since I don't see a reaction.

Is your son on medication now?

He is on Periactin, an antihistamine that " increases hunger " . I assume it is

blocking his reaction to foods. Without it he would certainly still need a

g-tube. His tube popped out 2 years ago and during that time he has only gained

4 lbs during the years of the biggest growth. But I am still thankful because

other wise we would still be shoving Neocate down it and never getting to the

problem!

The whole supplement range, what you give him?

OH,Boy! Acidopholius, Spectrum Multi (the SCD version), Ultra pure fish

oil...you know this is a very long list and he's been sucking before all of

these supplements were added and none of them changed anything. Are you

thinking of one that might help? All his supps. are legal.

How much pure water do your children drink in the day, pure water from the tap

or bottle water, still water with nothing added?

Not much. He chokes on thin liquids even in a sippy. He will ask for water

sometimes and he drinks it through a straw sippy choking on almost every little

sip never taking much more than and ounce before stopping. He drinks his

homemade pear juice through a bottle with no problems since that is the easiest

way for him to drink. Could the bottle have anything to do with his sucking?

Does he has any reaction to any foods?

Oh of course. Cow's milk, eggs, peanuts, and tree nuts (mostly almonds and

cashews but because of the severity and cross-contamination all are out) either

cause anaphalxis or sever vomiting. But he reacts to all other fruit and

veggies (and some oils) that I have tried. Green bean, asparagus, blueberries,

apples, tomatoes... He has 36 IgG sensitivities when last tested.

How many different doctors have you involved with his problems? And do they

have all the same solutions, or are they giving you all different kind of

possible solutions?

Just our DAN who is having us watch the sucking frequency for any pattern.

Thank,

Carr carrfamily4wh@...> wrote:

Hi everyone. Just wondering if anyone else has a child who has a " habit " of

moving his mouth just like he's sucking on a bottle while there is nothing in

his mouth. Thanks to SCD, we are having days where the ASD would hardly apply!

Trials of certain foods cerainly still set things off, but we are very excited.

Of course he has only gained 4 ounces, yes ounces and his little sister is

almost as tall as him but I am hopeful and it is still early I know. But this

" sucking " has only been touched a bit.

It started a little over a year ago when he was put on antibiotics for a

couple months for motility believe it or not. At his worst he is " sucking "

anytime he is not talking, eating or walking. At his best he is only sucking

when completely off in his " own world " reading books, on a car ride, studying

and rolling his match box cars (that used to only get thrown around the room!).

His sucking is worse when he has a cold/virus/flu and at the beginning of

die-off or any time he says his belly is sick-y. He will even " suck " in his

sleep to the point that if we come close to his door we can hear him. It has

been best when starting pro-biotics and the first day of the intro he spent a

whole half hour wagon ride just barely sucking 2 times. I have to say that

before SCD he would also slurp his saliva and that is completely gone so I guess

there has been a progression.

Does anyone have any insight on this? Is this an oral stim? I always

figured that his body is trying to get more enzymes from his saliva. Does this

make sense? We have been slowly working our way with HN enzymes and no effect

on this sucking.

Thanks

Elijah, 3, leaky gut, ASD

a, 22 months

SCD 11.5 weeks

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