Re: My 11 month old son

[Guest guest]

> I'm new to this list and I write in the hopes that someone can give

some

> good advice.

> I have a 11 mos old son who is struggling with very extensive

allergies. He

> seems to be sensistive to just about all foods.

>

> I would like to find someone (preferably an ND or MD) who has

experience

> dealing with autism in infants.

When your autistic child was around 11

> months old, what signs was he exhibiting that you could see then,

or in

> retrospect now see as evidence? What are the key indicators I

should be

> looking for?

> Laninga

**

Hi . I can't help you with your first group of questions as

I am not a doctor. As a parent, I can look back and tell you my son-

, who is now 4.6 yr-had autism when he was probably 10 months old.

at that time he was sitting on his butt in the middle of a floor and

go round and round and round. I think he had good eye contact because

he was indeed searching for a reaction in us for his behavior. not

long after that he was lining up toys, he was able to sort shapes

into a shape sorter (not the simple ones, the ones with many faces

and different shapes) and he was doing it always in a certain order.

He loved doing puzzles and was good at it as well.He started walking

exactly at 12 months; though, had lost his verbal skills by age one

(or 13 months)then he started degenerating: his first birthday must

have been an horror for him with all the people around him. His b'day

is 4 days before Christmas, and he didn't like to opening presents or

rip up papers not even then.His second birthday was even worse. We

just opened his presents and gave him what we tough he'd like (

has billions of toys...he was only interested in same kind of toy but

took him long times to decides he liked a new version of the same

toy.All the other " educational " toys: my NT twins are enjoing them

now very much)

He was very happy and quiet child-now is the opposite!-he sleept

always through the night-hugh!wish he did it now-and loved watching

tv, for hours, alone, almost never needed company;he also loved to

carry around a wooden spoon, and that was a VERY hard thing to take

away: he grew very fond of it and attacched to it, that taking it

away always resulted into tantrums for quite a long time, and so we

always had to give it back-we just thought he was stubborn-.He also

loved(or we did) going shopping, because that would put him to sleep

and he'd sleep in his stroller for the whole time.We learned later

that it was his way of " tuning out " what was unbearable:people and

noises.

At age 10 monthe my inlaws came for a visit and we moved his crib in

our room, when they left we moved the crib back: he was not the same

child anymore; he didn't want to sleep there, he wanted with us, and

in our bed; would wake up if we moved him; we solved that problem in

about a month I think, but we had to struggle quite a bit.He did

understood " NO " , and still does; and doesn't like it )

All the rest came later, and a lot of things are now confused

memories-a bit-.

So there you have the comparison. My Son is ASD, not asperger, and

still non verbal, but improving.

[Guest guest]

, get Karyn Seroussi's book " Unraveling the Mystery of Autism and

Pervasive Developmental Disorder " as soon as you can. You will find it very

helpful. Your son sounds a lot like Evan was at that age but we were not

seriously worried about him until months later. It is wonderful that you

are working at the diet this early. The earlier the better. I am sorry

that I cannot help with your search for a doctor.

Betty

----- Original Message -----

> I'm new to this list and I write in the hopes that someone can give some

> good advice.

>

> I have a 11 mos old son who is struggling with very extensive allergies.

He

> seems to be sensistive to just about all foods.

>

> I would like to find someone (preferably an ND or MD) who has experience

> dealing with autism in infants. We'd like to know whether (after a

> consultantation) whether our son is on the path toward autism or whether

we

> are dealing just with major allergies.

>

> Our ND is very good, but doesn't have any specific experience with autism,

> so he's wanting to conclude autism last and everything else first. We're

> hoping to find someone we can phone and setup a phone consultation with to

> get some analysis of our son's situation. If you, or someone you know

could

> be this person, please let me know.

>

> That said, I would like to know: When your autistic child was around 11

> months old, what signs was he exhibiting that you could see then, or in

> retrospect now see as evidence? What are the key indicators I should be

> looking for?

>

> My son does not display much emotion except when upset or when tickled.

> Other than that, he's remarkably quiet and very serious. He does have very

> good eye contact, responds to his name and understands " no " . He is

babbling

> well but doesn't seem to be understanding things in the same way his two

> older sisters did at the same age. He is extremely physically developed,

> climbs the stairs and walks (nearly runs) around the house. I guess I

would

> typify his demeanour as " dazed " a great deal of the time.

>

> We had an organic acid test done recently which showed a probable

> gluthatione deficiency and problems detoxifying. He has also tested

postive

> to allergies for gluten and casein.

>

> Thanks for any input you might have.

>

>

>

> Laninga

[Guest guest]

I agree totally with the last post. I was also telling the Dr.'s that

something was " different " with my son, only to be told " he's a boy! Boys

develop slower. And he's " immature " for his age. " Like a lot of other posts,

we as parents do not hold much regard for Dr.'s opinions when we as parents

see this different behavior 24/7. I started making phone calls, and found

options for help. Start at the MR/DD in your state. They have wonderful

programs for kids 0-3, then they offer others as the child qualifies for as

they get older. Developmental pediatricians are helpful in getting a

diagnosis and referring you for help. You already are on the diet, so keep

that up. I wished I had known about it sooner. My son has improved greatly

from it. Join a local support group also. Hope this helps Cheri****

[Guest guest]

Dear Davo Laninga,

My advice as a mother with experience; Please take immediate action

to remove gluten and casein from your son's diet. It means some

effort and learning but you may save your son and yourself of many

dreadful years. The behaviour seems to be like that of my son in this

age. He developed full autism. We started diet when he was 4 and half

years. Now much better but still a long way to go. The diet is a

serious business needing to avoid even molecular amounts of these 2

proteins. But it is possible, just like the people with diabetes can

manage. It gives your son a great chance.

As such a young kid needs a lot of proteins, please be sure to cover

his needs with other proteins such as soya/eggs/meat. A full scale

elimination of everyhting suspicious would certainly harm his growth.

Best thing to do the diet is with the consultancy of nutritionist if

you can.

Please study the theory behind the diet and you will realize - gluten

and casein work for these kids major and permanent damage in the

brain if left for years.

Good luck

Kati

Please see my comments too:

> I would like to find someone (preferably an ND or MD) who has

experience dealing with autism in infants. We'd like to know whether

(after aconsultantation) whether our son is on the path toward autism

or whether we are dealing just with major allergies.

- Diagnosis would be sure at the age of 1,5-2 years. By this time

there would be a lot of damage and sleepless nights.

Our ND is very good, but doesn't have any specific experience with

autism, so he's wanting to conclude autism last and everything else

first.

- Do not loose time: go to someone who knows about the diet

connection.

That said, I would like to know: When your autistic child was around

11 months old, what signs was he exhibiting that you could see then,

or in retrospect now see as evidence? What are the key indicators I

should be looking for?

- quiet, serious, dazed, does not understand what is happening, does

not join play with others, does not come to greet parents coming home

etc.

- physically advanced + toe walking

- continuous cry of stomach/head pains, meltdowns, night wakes, no

sleep, diarrhea (this is later, starts about 2-2,5 years old)

- foods limited to one thing only like french fries (now I know that

he learned to know that the food was destroying him and he refused to

eat ... we were feeding him these 'poisons' by force....)

[Guest guest]

> That said, I would like to know: When your autistic child was

around 11

> months old, what signs was he exhibiting that you could see then,

or in

> retrospect now see as evidence? What are the key indicators I

should be

> looking for?

,

We are still unsure in our house what is/was wrong with our son. We

are in the midst of a bunch of testing at this point. Our son is

definitely higher functioning if anything is wrong. Sigh. It's

confusing. What we DO know is that if he eats wheat he has 1-2

diarrhea poops a day. Without it, he goes every 2-3 days, with a 1/2

normal and a 1/2 diarrea movement.

Ethan did test positive for the gluten and casein peptides.

Before he was 1 the three BIGGEST things that we observed was that

Ethan could seriously watch tv - any tv - weather channel - for great

periods of time. His concentration on the tv and on his toys was

amazing. We limited his TV, but we certainly let him watch some.

Two, he was not affectionate. And three, he barely babbled. Having

a NT son the second time around I could see a difference in that.

Ethan seemed more into himself - did not try to engage people in the

slightest - in fact did not do this until he was 4 months shy of his

3rd birthday.

We're

> hoping to find someone we can phone and setup a phone consultation

with to

> get some analysis of our son's situation. If you, or someone you

know could

> be this person, please let me know.

They have somebody at GreatPlainsLaboratory.com that can help you

out. They have specific tests that look for biological markers of

autistic kids. You said you did the Organic Acids Test - they have

one of those. My son shows he is in a state of ketosis, has a yeast

and a bacterial infection, and is glutathione and B6 deficient.

Anyway, we talked to a woman named Pam after we got the test results.

You can also try and get your school district involved with the

Parent As Teachers program - they help you with children 0-3 and know

of a lot of services that are free for children under 3 - we got 5

months of inhome and free speech therapy for our son.

I kept trying to tell my doctors that 'something' was off with my

son, and got nowhere. Good for you for pursuing this early.

Luster

PS. Email me off list if you would like some information regarding a

possible link between autism and childhood vaccinations.

[Guest guest]

I'm confused. When my family had blood drawn for the 92 foods, some things

that each of us never eat came up on the testing as a problem. Anyone else

have this happen?

Joyce

>>>>We had blood drawn last week for an allergy test through great smokies,

but

then this weekend realized that this is going to be pointless... Any

reaction he'll show is most likely to be things my wife is allergic to - we

only weaned him this week. Also, my wife has had a very restrictive diet

even since she was pregnant - no dairy for example. So since his system has

never seen dairy for example, there's no way for the test to show positive

for dairy even though it could be true. So I phoned the lab and had them put

the test on hold until we talk to our ND tomorrow.

[Guest guest]

, it's a matter of what he's not allergic to, more than what he is. We

really still can't give a definite list of what he isn't allergic to, but

this is his diet this week.

chicken

salmon

avacados

asparigus

squash

We also had been giving him parsnips, but he seems to have reacted to those

now too...

I'm trying to get him to even drink water, but he's fighting that a lot, so

his liquids are down a lot.

We had blood drawn last week for an allergy test through great smokies, but

then this weekend realized that this is going to be pointless... Any

reaction he'll show is most likely to be things my wife is allergic to - we

only weaned him this week. Also, my wife has had a very restrictive diet

even since she was pregnant - no dairy for example. So since his system has

never seen dairy for example, there's no way for the test to show positive

for dairy even though it could be true. So I phoned the lab and had them put

the test on hold until we talk to our ND tomorrow.

Davo

> Re: My 11 month old son

>

>

> Could you tell me what the allergys are-I may be able to tell

> you some more

> alternatives-Five foods is so very few-I hope I or someone

> else can come up

> with ways to help you expand that. There is also another

> group by yahoo- it

> is the food allergy kitchen and they are very good at

> offering sugestions

> for alternative foods. Lis aF

>

[Guest guest]

I have a 11 mos old son who is struggling with very

> > extensive allergies.

> > He

> > > seems to be sensistive to just about all foods.

Davo -

Wow, your situation is so similar to mine with my son. I swore that he

was allergic to everything when he was an infant, I couldn't seem to

find any food that he tolerated well. And his sleep was so restless, he

tossed and turned and moaned and was in obvious pain. By day he was

crying all the time, he didn't enjoy playing with his toys very much,

and often when he made eye contact he'd cry. Though he was (still is!)

very physical, walked, ran, climbed, etc. Lots of similarities, eh? I

myself was suspecting ASD though no doctor thought I was in my right

mind. I stopped vaccinating him at 9 months.

At at the age of 13 months we saw Dorfman (behavioral nutritionist

that specializes in ASD) and she put him on the gf/cf diet (which I knew

of myself, but thought it was too hard, and certainly *my* son didn't

need that ha ha) and started him on cod liver oil, colostrum, and

acidophilus. Within one month we saw marked improvement. Yes, he went

through a period where he ate nothing but bananas and sweet potatoes (no

joke, *nothing* else) but you know, I think his own body knew how to

heal itself. Actually he was grain free for a year (no corn, rice, or

any other grain) so all he ate was meat, veggies, and fruit. I will

admit, it was mostly fruit when he was younger, though he has always

loved peas. Although his diet was wildly imbalanced I saw it as a

necessary (and temporary) tradeoff. When he was 22 months I had him

evaluated by Early Intervention, who felt he had Sensory Integration

Disorder, and were unsure about ASD. We continued with the diet and OT,

speech therapy, and behavioral therapy, and at the age of 25 months I

had him evaluated by a very well-known neurologist, who said definitely

not ASD. I then took him to a dev ped, who agreed. I was thrilled!

But the upshot is that he had been gf/cf for over a year when he was

evaluated, and this I know made a world of difference to him. If I had

kept him on a normal diet, who knows what the diagnosis would have been.

He's now 29 months and just lost his speech therapy 2 months ago. He is

speaking at or above his age level. He continues to get OT and social

work for his behavior to treat his Sensory Integration, though we all

suspect that when he tranfers to Child Find at age 3 he will no longer

qualify. He is still on the diet, though we have been able to add corn

back in with success (after 1 year of being on the diet). Once in

awhile he gets other grains, like sorghum, amaranth, quinoa, but still

he is mostly meat, fruit and veggies. He is totally amazing, if you met

him you would not think there was a thing wrong with him, other than

perhaps he tantrums a bit more easily than most kids. But that I can

live with!

So, there is lots of hope, you are catching it very young like I did,

and I believe I made all the difference in the world to my son.

Sometimes I just cry because I get overwhelmed with the feeling that I

" saved " him. Other times I just want to curse because I am prying a

piece of bread out of his hand (that he stole from his sisters' plates).

But you know, he is finally learning, if I tell him " No Caty, you can't

have the bread " he will look at me and ask " Hurt tummy? " and I say yes,

it will hurt your tummy, and he seems to understand that. It is a big

leap for us, for him to be able to take a bit of responsibility for the

diet. I don't know when we will challenge the diet, I'm thinking maybe

when he's 3.5 or 4 yrs old? But I'm in no rush at the moment.

Good luck to you and keep up the good work! I will pay off, I'm sure!

mom to Winona Jane (4 yrs), Caton (2 yrs, SID) and Aster Ann (1 yr)