Re: I feel so frustrated about my son's physical issues, need input ...

[Guest guest]

This sounds exactly like how my son was. How old is your son?

I feel so frustrated about my son's physical issues, need input ...

My son was only diagnosed in December so this is all quite new to me to some degree. I know he has autism, tactile sensitivties, food sensitivies/ aversions, he had a conductive hearing loss that seems to now be corrected, etc. However, he walks like he is totally wasted, has horrible balance, 99% toe walks, and maybe it's common with kids on the spectrum (if it is, please tell me) but I just feel like there could be another physical issue because it's really, really bad. If we're in the kitchen and he is waiting for me to get his snack he often just fumbles around on his feet and bumps his head on the edge of the counter top of walks into cupboards because he is so clumsy. I don't know, I mean, do kids on the spectrum often have these problems or could it be something else. I have had him evaulated by THREE OT's and have been told vestibular, propreoceptive, tactile problems. One said he has dyspraxia, poor

body awareness, etc. He is always moving though, he can not sit still. Any thoughts?? I guess in my gut, I just feel like it could be more than just sensory.Thanks.gfcfmom

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[Guest guest]

My son will be 3 in June.

>

> This sounds exactly like how my son was. How old is your son?

>

>

> I feel so frustrated about my son's physical issues,

need input ...

>

> My son was only diagnosed in December so this is all quite new to me to some

degree. I

> know he has autism, tactile sensitivties, food sensitivies/ aversions, he had

a conductive

> hearing loss that seems to now be corrected, etc. However, he walks like he is

totally

wasted,

> has horrible balance, 99% toe walks, and maybe it's common with kids on the

spectrum

(if it

> is, please tell me) but I just feel like there could be another physical issue

because it's

really,

> really bad. If we're in the kitchen and he is waiting for me to get his snack

he often just

> fumbles around on his feet and bumps his head on the edge of the counter top

of walks

into

> cupboards because he is so clumsy. I don't know, I mean, do kids on the

spectrum often

> have these problems or could it be something else. I have had him evaulated by

THREE

OT's

> and have been told vestibular, propreoceptive, tactile problems. One said he

has

dyspraxia,

> poor body awareness, etc. He is always moving though, he can not sit still.

>

> Any thoughts?? I guess in my gut, I just feel like it could be more than just

sensory.

>

> Thanks.

>

> gfcfmom

>

>

>

>

>

>

________________________________________________________________________________\

____

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now. http://

mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

[Guest guest]

My son will be 3 in June.

>

> This sounds exactly like how my son was. How old is your son?

>

>

> I feel so frustrated about my son's physical issues,

need input ...

>

> My son was only diagnosed in December so this is all quite new to me to some

degree. I

> know he has autism, tactile sensitivties, food sensitivies/ aversions, he had

a conductive

> hearing loss that seems to now be corrected, etc. However, he walks like he is

totally

wasted,

> has horrible balance, 99% toe walks, and maybe it's common with kids on the

spectrum

(if it

> is, please tell me) but I just feel like there could be another physical issue

because it's

really,

> really bad. If we're in the kitchen and he is waiting for me to get his snack

he often just

> fumbles around on his feet and bumps his head on the edge of the counter top

of walks

into

> cupboards because he is so clumsy. I don't know, I mean, do kids on the

spectrum often

> have these problems or could it be something else. I have had him evaulated by

THREE

OT's

> and have been told vestibular, propreoceptive, tactile problems. One said he

has

dyspraxia,

> poor body awareness, etc. He is always moving though, he can not sit still.

>

> Any thoughts?? I guess in my gut, I just feel like it could be more than just

sensory.

>

> Thanks.

>

> gfcfmom

>

>

>

>

>

>

________________________________________________________________________________\

____

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now. http://

mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

[Guest guest]

IMO, clumsiness, as well as the proprioceptive

and other sensory issues you've mentioned are

very much part of autism.

One reason for not sitting still is because these

children will self-stim to try to correct their

sensory need. For example, my son had poor

proprioceptive awareness and was always running

into the TV full steam and slamming into it.

I thought this was a stim on the TV. We had an

excellent OT through early intervention and she

told me it was because he couldn't always feel

where his body was.

So, she prescribed a sensory diet. I was doing

alot of the same things for him that he was doing

for himself. I wondered why I could " fix " the

problem, but he couldn't " fix " it himself with

his stims.

She explained that these children's physical

stims were being generated on a brain-stem or

automatic level, but doing it for them brought it

to their awareness, and this is why it helped

them. She said that over time, with a good

sensory diet, my son would begin to regulate

himself and meet his own sensory needs.

Well, it didn't make 100% sense to me, but it did

work. It wasn't even that hard. According to my

OT, the more severe the child's disabilities, the

more structured the sensory diet needs to be

(following specific order, etc). In my son's

case, I did certain things (joint compressions,

brushing) but not always in the same order and it

still worked for him.

So, if you don't have an OT who can give you

concrete things to do for your child re: sensory

diet, I respectfully suggest finding an OT who

will.

It made a huge difference for my son, as well as

being cheap, pretty easy, and not too time

consuming.

Kim

--- gfcfmom wrote:

> My son was only diagnosed in December so this

> is all quite new to me to some degree. I

> know he has autism, tactile sensitivties, food

> sensitivies/aversions, he had a conductive

> hearing loss that seems to now be corrected,

> etc. However, he walks like he is totally

> wasted,

> has horrible balance, 99% toe walks, and maybe

> it's common with kids on the spectrum (if it

> is, please tell me) but I just feel like there

> could be another physical issue because it's

> really,

> really bad. If we're in the kitchen and he is

> waiting for me to get his snack he often just

> fumbles around on his feet and bumps his head

> on the edge of the counter top of walks into

> cupboards because he is so clumsy. I don't

> know, I mean, do kids on the spectrum often

> have these problems or could it be something

> else. I have had him evaulated by THREE OT's

> and have been told vestibular, propreoceptive,

> tactile problems. One said he has dyspraxia,

> poor body awareness, etc. He is always moving

> though, he can not sit still.

>

> Any thoughts?? I guess in my gut, I just feel

> like it could be more than just sensory.

>

> Thanks.

>

> gfcfmom

>

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Matt will be 3 end of August...we started biomed in earnest in Dec.

He was diagnosed last August. We are just now starting to think

there is a light at the end of the tunnel. He was very sick the

first two or three months and since our bimed efforts were trial and

error - everyone's are...things have not gone as fast as we would

like. However...your son sounds just like Matt and Matt is on the

mend.

His turn around is not as stunning as Stan's boy's, but then Matt is

not eating what Stan's kid did...the more you learn about food the

more it becomes obvious why Stan's kid did so well so fast...and

Stan's kid was a bit older than ours...and these kids ARE learning,

just not expressing...so when the language came for Stna's boy there

was more of it. For Matt, he has woken up at about 18 months so he

is learning to talk etc. He only has one sentence so far, but new

words every day, great eye contact, far fewer sensory issues...we are

going to Disneyland today for example and he WANTS to go for the

first time ever to see " Mickeee! " and to ride the " hosies " - the

merry go round. Things will get better - hang in there.

Make GFCF the destination, and really try to go whole foods SCD legal

only - or at least very very limited grains, starches, and c carbs

JUST FOR AWHILE to ease the digestion burden and until sensory stuff

subsides...you are seeing the consequences of fementation and

putrification in the gut and or the waste matter of parasites.

Fungal yeast makes our kids trip...ever seen how tiny a " magic

mushroom " is? T are wee little things that grow on cow patties in

Texas and can lay a 6ft college football player on his back staring

at a wall for 8 hours - ah the things we learn while in college. The

sensory stuff is bc of the toxic burden...lesesn that and the sensory

stuff diminishes too. You can walk straighter after one glass of

wine than six shots of whiskey...sugar is the whiskey, mum....and the

carbs, even gluten free ones are like tequila - at least in this

house. Everything our kids eat effects their sensory issues BIG TIME

while the gut is injured and infected.

Make getting healing foods in a GOAL and employ ABA people to do it

if you must -as did to get Body Ecology stuff on board. Matt

will not eat Stan's pecan muffins, unfortunately...LOADED with

manganese and antioxidnts and a big part of the reason his kiddo came

back to life as if shot from a cannon I think...we overfeed meat in

this house for lack of a better plan right now sa we are just staring

with behavioral therapy. We are not that removed from where you

probably are with your kiddo's diet...when we left GFCF snacks and

all that behind, brought in the oils, and vits and supps...of which

the oils, zinc, and b vits are the most important I think for sensory

stuff...it all got SO MUCH BETTER.

We bought a rebounder trampline and this has been huge...he jumps on

it all the time and this heals his lymphatic system and assists the

adrenal one too...if he is going to watch a train video he is

jumping all the while he does it....

We put him in high tops almost all day so he would not be able to toe

walk...he did not like them, now he asks for " shoos peease. " We only

started biomed and got off the GFCF thing in December...change can

come and it will once you just tweak what you are doing...right now

we are trying to move to salmon from chicken and get some berries in

instead of just apples...it is a SLOW process for us. It may go

faster in your home if your kd is more compliant in the food area,

like 's post ABA help.

The sensory issues are starting to go away as the gut issues and

aftermath of his toxic burden subsides...after youve been SO drunk

sometimes you are hung over after all. Here is what WORKED...

all the Ot stuff mentioned in the other e mail - huge help. We did

not see big results until we added a special needs gymnastics class

at a big gym on big equipment...we use BMOD here in LA affiliated

wtih Monarchs. Matt now does drop off, twice a week, loves it, and

can jump, run - and not like an ape anymore- toe walks FAR less, and

stops and walks normally when prompted DOWN OFF YOUR TOES MACK...

The swinging helped alot, but only after the pros did it with

him...initially he just screamed in the swing so home swinging was

not an option. Lots of sunshine! Lots of enzymes...if a bite goes

in an enzymes has gone in first in this house, for now...high does

probiotics. I did not GET what people meant when they said that and

i was giving FAR less than therapeutic doses...here is what I mean:

about 9 am - Nizoral and valtrex in the am with a g smith apple,

cored and peeled for brk ( with No Fenol ) and maybe a chicken

drumstick and a bit of orange j mixed with water. His am vits and

supps. Therapy with mom and AST/PRT person

11-11:30 - Culturelle capsule and one Primal Defense capsule and

enzymes and some snack, maybe juice and crackers...fresh squeezed

spinach with pear and apple is a good one and some baby carrots or

sauteed green beans in our house. His fermented CLO, we are starting

high vitamin butter oil at this time soon, and his eve primrose oil

and Omega 369. Will be tweaking the oils soon, so I will let you know

how he responds to the changes. We do not like N Naturals in this

house. Hoping Green Pastures will rock.

Two hours after that: valtrex and a bit of banana or other reinforcer

so he will take it and some No Fenol on an almost empty stomache as

it fights yest when given without food.

Therapy until 3 pm each day, different therapies on different days,

and the Big Gym twice a week...that was one of our biggest expenses,

but we have seen our BIGGEST gains from it in the sensory

department. Huge part of the reason he began talking and better

regulating etc....hyperbaric chamber is inferior in my opinion to

oxygenating the body holistically and with rigorous excercise, at

least at first...that gets things going - REALLY - and within two

months for us...all screaming at first, but rosy cheeks now and MUCH

BETTER. Also unlike HBOT, this was social and normalizing for being

with NT kids. He has started to move twds them on the playground now

and when they run and play chase he parallel plays it, running and

screaming with laughter bc he thinks he is in the game...he is

copying the game. 6 months ago he could not run like a kid

though...chest out arms flailing, like an ape...and kids avoided him

bc he looked/walked/ran weird. THey do not even notice him now...and

sometimes I cheat and say he is younger than his years, and watch

amazed as they let him play with/next to him now, no problem. It

gets better, mom. Hang in there. Tweak your game plan and your

healing strategies. Spend money on some things and not on others for

now...

Dinner is valtrex, enzymes, roast chicken drumsticks hopefully some g

beans or carrots, but at this point usually not....I give dropperfuls

of bone broth ( this turned his teeth around bc of the calcium, Thank

God...they were scary for awhile and getting worse each day...now

improving) as if it is medicine. If I could get him to drink broth

like Stan's boy...Damn. I would get him back, the stuff is SO good

for you when made traditionally with medicinal intent...if you are

willing to squirt it by the tsp or think yours will drink soup, I

will email you how I make ours.

Bedtime routine after more jumping and a video and looking at books

etc. Matt goes to bed quite late, but he sleeps through...10 or

11pm Up at 8am. We are woking on that right now, trying to make it

earlier, but unless he is really tired his gut issues and parasites -

which we will be addressing very soon with Humaworm -it all keeps him

up. At bedtime he gets two adult size scoops of Custom Probiotics

acid blend, 2 Primal Defense, 1 Culturelle...all this just to get one

bm a daym formed with no undigested food, still green with bacteria,

and we still give enemas every few days to assist him bc he just

swells up with compacted fecal matter.....you can see gains even

while and despite not having sorted the puzzle of all your kids'

injuries/issues - we are. The enemas have helped with the sensory

issues as well. When he is not constipated he toe walks far less and

does not rock at all. He also has far far less eye avoidance. That

is the case with our kiddo anyway. THe enemas were a revelation...we

had no idea he had so much STUFF trapped in him even after ,

immediately after, what we thought was a decent bm. Even right after

a bm we have given one to find a ton of GUNK come out of him, poor

baby. I think had the same experience with her son too...I

think the bigtime sensory kids have alot of gut discomfort as well as

toxicity...just plain old fashioned i feel AWFUL stuff going on that

they cannot express. If you have ever felt very heavy in your colon

or constipated, it is agonizing. I only experienced it post c

section, but I recall the lengths they went to get me going

again...you cannot leave the hospital until you have a moevement.

Interesting, no? Our kids can go days without one and peds act like,

well, those kids are just like that....! If the enema things seems

gross to you or he fights it...just focus on the TREMENDOUS relief

from suffering and pain that you are actually providing...and that is

an area where I would hire someone to help you do it a few times, a

nurse etc from an agency, if nobody in the house can assist. This

will turn the sensory stuff around, and fast....I had a nurse friend

help me with the first 2 or three, now I do not need that, but I

still need my husband. We got spontaneous playing and after the

first time we helped him get all that stuff OUT...

Hang in there. You will work out what he needs and then give it to

him...I hope this long rambling e mail helps a bit....Di

Good luck. Remember we were nonverbal and very much as you describe

you son in DEC. It is only april now....it feels like years, but

really, it has only been four months. Take care...Di>

> My son will be 3 in June.

>

>

>

>

> >

> > This sounds exactly like how my son was. How old is your son?

> >

> >

> > I feel so frustrated about my son's

physical issues, need input ...

> >

> > My son was only diagnosed in December so this is all quite new to

me to some degree. I

> > know he has autism, tactile sensitivties, food sensitivies/

aversions, he had a conductive

> > hearing loss that seems to now be corrected, etc. However, he

walks like he is totally

> wasted,

> > has horrible balance, 99% toe walks, and maybe it's common with

kids on the spectrum

> (if it

> > is, please tell me) but I just feel like there could be another

physical issue because it's

> really,

> > really bad. If we're in the kitchen and he is waiting for me to

get his snack he often just

> > fumbles around on his feet and bumps his head on the edge of the

counter top of walks

> into

> > cupboards because he is so clumsy. I don't know, I mean, do kids

on the spectrum often

> > have these problems or could it be something else. I have had him

evaulated by THREE

> OT's

> > and have been told vestibular, propreoceptive, tactile problems.

One said he has

> dyspraxia,

> > poor body awareness, etc. He is always moving though, he can not

sit still.

> >

> > Any thoughts?? I guess in my gut, I just feel like it could be

more than just sensory.

> >

> > Thanks.

> >

> > gfcfmom

> >

> >

> >

> >

> >

> >

>

______________________________________________________________________

______________

> > Be a better friend, newshound, and

> > know-it-all with Yahoo! Mobile. Try it now. http://

> mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

> >

>

[Guest guest]

how did you get rid of the intestinal measles?

> >

> > My son was only diagnosed in December so this is all quite new to

> me to some degree. I

> > know he has autism, tactile sensitivties, food

> sensitivies/aversions, he had a conductive

> > hearing loss that seems to now be corrected, etc. However, he

> walks like he is totally wasted,

> > has horrible balance, 99% toe walks, and maybe it's common with

> kids on the spectrum (if it

> > is, please tell me) but I just feel like there could be another

> physical issue because it's really,

> > really bad. If we're in the kitchen and he is waiting for me to

> get his snack he often just

> > fumbles around on his feet and bumps his head on the edge of the

> counter top of walks into

> > cupboards because he is so clumsy. I don't know, I mean, do kids

> on the spectrum often

> > have these problems or could it be something else. I have had him

> evaulated by THREE OT's

> > and have been told vestibular, propreoceptive, tactile problems.

> One said he has dyspraxia,

> > poor body awareness, etc. He is always moving though, he can not

> sit still.

> >

> > Any thoughts?? I guess in my gut, I just feel like it could be

> more than just sensory.

> >

> > Thanks.

> >

> > gfcfmom

> >

>

[Guest guest]

I don't know if this will help or not, but have you tried putting the

broth into smoothies? I just tried this recently and it went over

great! I made a smoothie with frozen chicken broth, ice, banana,

avocado, pineapple, pineapple juice, and some vanilla. Everyone in the

family loved it and no one could guess that my secret ingredient was

chicken broth.

> I give dropperfuls

> of bone broth ( this turned his teeth around bc of the calcium, Thank

> God...they were scary for awhile and getting worse each day...now

> improving) as if it is medicine. If I could get him to drink broth

> like Stan's boy...Damn. I would get him back, the stuff is SO good

> for you when made traditionally with medicinal intent...if you are

> willing to squirt it by the tsp or think yours will drink soup, I

> will email you how I make ours.

>

[Guest guest]

Thanks for your post.

What do you mean by " fermented CLO " ?

I know what CLO is however what do you mean by fermented?

Can you please tell me how you make your bone broth?

Thanks!

[Guest guest]

The fermented CLO is available from Green Pastures. We are trying it

now instead of just normal CLO - though they sell that too. It has

never been heat treated or processed and is supposedly more bio

available and assimilable for kids with gut issues...we shall see.

You can only go that route if your chid swallows caps. Teaching

Matt, though only 2.5 to swallow caps was one of the best decisions

we made...it opened up the door to getting whatever we needed to get

into him into him, basically....most stuff tastes awful. Matt would

rather swallow supps anyday than take a twp of CLO off a spoon for

example. HIding never workied in this house and led to him only

eating apples and chicken drumsticks, smart kid! And only clear

water in a clear glass the little stinker....he will take a

dropperful or two of bone broth though...

In advance I will tell you this stuff is DELICIOUS - we were quite

surprised as it looks so nasty. God bless the French. you go to the

asian grocery store and buy chickens feet...yes, the feet...call

around.

You also buy necks backs and the bony bits. Rinse and cover in cold

water, 2 tbl spoons of apple cider vinegar to leach the calium from

the bones, 2 onions rouch chopped into quarters, two or three big

carrots, broken and tossed in, one stalk opr two of celery, same.

Bring to a boil, rduce heat and simmer ON - 24 hours at least or

longer...you can add water to the pot if it goes dwon too much....but

you want this on a low simmer, covered....to leach out all the

calcium. In the last three or four hours take a big bunch of fresh

parsley, tied and drop it in. Add a couple bay leaves. Drain and

dump all contents. Let cool put in fridge...scrape the white fat

layer off the top and toss...though they save it in France to fry

potatoes in...and the broth should turn into this jello gunk. Crazy

looking - it is called fume'. If you do not use feet and use only

legs and wings etc...then once you skim the fat it will be

stock/liquid. The concentrated amounts of gelatin come from the

feet...and the gelatin is the secret to the anti inflammatory healing

qualities of good chicken soup. Jewish penicillin was made with the

feet, neck etc or it was just stock....and fume is more than mere

stock. You will see. The wonder of food. We made the bone broths

until we located a Ranch 99 Asian market that sold the parts of the

chicken to make fume...now I concentrate on fume only as we are doing

the broths fro medicinal reasons in this house, so we want it to pack

the max punch as an anti inflam. strategy. Once heated the fume

turns to liquid and looks just like chicken soup...really delicious

soup base...use it in all sauces, to stir fry your veggies etc...we

never tell anyone how it is made and everyone says the same

thing...wow this is DELICIOUS. GO figure. The recipe is from

Nourishing Traditions cookbook....very very interesting reading. Di

>

> Thanks for your post.

> What do you mean by " fermented CLO " ?

> I know what CLO is however what do you mean by fermented?

> Can you please tell me how you make your bone broth?

> Thanks!

>