Re: Another Intro - Long

[Guest guest]

>The other question I have is that he seems to be having a lot of sensory

>issues since we've had him on the enzymes. He's always rubbed his face on

>things, but he now seems very sensitive to sounds. Although it has

>diminished a little in the last week. Could this just be getting used to

>the enzymes? We've had him on a full capsule of each with every meal and

>snack (Peptizide only if he's just having a glass of milk) for about a

>month now. Could the adjustment take longer than 3 weeks in some kids?

Many autistic children have Sensory Integration Disorder as well - which

sounds like what you are describing - problems with textures (moving from

baby food to table food) - sound sensitivity - tactile seeking (rubbing

things on his skin) - I would ask to get an eval with an SI trained OT as

well - Occupational Therapy has been a lifesaver for my youngest with all

his sensory issues.

- near LAX

[Guest guest]

,

Thanks for the fast reply! We actually have an OT evaluation scheduled for this

coming Friday. Do you have any advice for things to ask about? I'm in the

process of reading the book 'The Out of Sync Child', but haven't gotten past the

point where I'm pretty convinced he definitely has sensory issues. What does

the Occupational Therapy do to address the issues? Any chance it will help with

his food intake? I am so sick of making grilled cheese sandwhiches!!!!

Re: Another Intro - Long

>The other question I have is that he seems to be having a lot of sensory

>issues since we've had him on the enzymes. He's always rubbed his face on

>things, but he now seems very sensitive to sounds. Although it has

>diminished a little in the last week. Could this just be getting used to

>the enzymes? We've had him on a full capsule of each with every meal and

>snack (Peptizide only if he's just having a glass of milk) for about a

>month now. Could the adjustment take longer than 3 weeks in some kids?

Many autistic children have Sensory Integration Disorder as well - which

sounds like what you are describing - problems with textures (moving from

baby food to table food) - sound sensitivity - tactile seeking (rubbing

things on his skin) - I would ask to get an eval with an SI trained OT as

well - Occupational Therapy has been a lifesaver for my youngest with all

his sensory issues.

- near LAX

[Guest guest]

At 11:27 AM 9/26/2004, you wrote:

>,

>

>Thanks for the fast reply! We actually have an OT evaluation scheduled

>for this coming Friday. Do you have any advice for things to ask about?

Make sure they will be looking at sensory systems as part of the eval not

all OT's are trained in Sensory Integration and the problems that can come

up as a result of lack of SI (propreoceptive, vestibular, tactile, oral

motor, etc.).

>I'm in the process of reading the book 'The Out of Sync Child', but

>haven't gotten past the point where I'm pretty convinced he definitely has

>sensory issues. What does the Occupational Therapy do to address the issues?

They will work on different things and this can include oral motor

stimulation (using a nuk brush to brush the gums)

> Any chance it will help with his food intake? I am so sick of making

> grilled cheese sandwhiches!!!!

Yes, dealing with the SI issues can help with food issues if they are

related - also removing offending foods from the diet can make a difference

(after we went GF my oldest who is my picky eater and had self selected

down to mostly carbs he varied his diet again almost immediately)... I've

been told enzymes can help too which I don't know if you've started yet, we

are just starting the enzymes here...

- near LAX

[Guest guest]

I would not give any of mine a full glass of milk- enzymes or not, especially if

they

are having increased sensory issues. The majority of my son's sensory issues

went away with the elimination of casein.

So did ear infections, sinus infections and runny noses. There was no such thing

as SI when mine was small- you got to figure it out for yourself. Rough and

tumble outdoor play/swimming., trampoline, team sports resolved the rest.

-GA

Re: Another Intro - Long

>The other question I have is that he seems to be having a lot of sensory

>issues since we've had him on the enzymes. He's always rubbed his face on

>things, but he now seems very sensitive to sounds. Although it has

>diminished a little in the last week. Could this just be getting used to

>the enzymes? We've had him on a full capsule of each with every meal and

>snack (Peptizide only if he's just having a glass of milk) for about a

>month now.

[Guest guest]

,

I've thought about pulling him off milk products a number of times, but I'm so

afraid since that is where he gets such a great percentage of his calories.

He's never had a lot of GI issues, or ear/sinus infections. He's been a really

healthy kid so far. I'm hoping to scale back on his milk a lot when I can get

him eating more foods, but right now, he's so limited I'm afraid he'd starve.

Despite what my doctor thinks, this kid really would starve before eating

something he didn't want. He's outlasted me by hours on his hunger strikes, so

the thought of taking away what he will eat just terrifies me.

He's been doing so extremely well with the enzymes, I want to give them a little

longer. Does anyone have any experience with giving regular milk with the

enzymes?

I would not give any of mine a full glass of milk- enzymes or not, especially

if they

are having increased sensory issues. The majority of my son's sensory issues

went away with the elimination of casein.

So did ear infections, sinus infections and runny noses. There was no such

thing as SI when mine was small- you got to figure it out for yourself. Rough

and tumble outdoor play/swimming., trampoline, team sports resolved the rest.

-GA

[Guest guest]

,

We've been on the enzymes for about a month and a half now.. a little less than

half at full doses of all 3. He's doing so well. Every day he seems to be

doing something new. For the first time he noticed the button to adjust the

headrest on the seat in front of him in the car.. he's seen it every day for the

last year plus and has never noticed it before! He also does seem to be getting

less sensitive to sounds and light, but still more sensitive than I would

expect. I'm hoping that with the OT he'll get even better.

I'm fairly confident that the whole point of the eval on friday is to assess his

sensory issues, so I imagine it would have to be with someone trained in it. I

hope! They seem pretty good at identifying problems at KKI, but not very good

at recommending solutions.

When your picky eater started eating more, how did it happen? Was he more

interested in what you were eating, or just started picking up foods he would

normally ignore? I try to put stuff out for him at every meal that he just

pushes away.. is there any hope that one day he'll give it a try?

Make sure they will be looking at sensory systems as part of the eval not

all OT's are trained in Sensory Integration and the problems that can come

up as a result of lack of SI (propreoceptive, vestibular, tactile, oral

motor, etc.).

Yes, dealing with the SI issues can help with food issues if they are

related - also removing offending foods from the diet can make a difference

(after we went GF my oldest who is my picky eater and had self selected

down to mostly carbs he varied his diet again almost immediately)... I've

been told enzymes can help too which I don't know if you've started yet, we

are just starting the enzymes here...

- near LAX

[Guest guest]

I've posted on eating on post #60942 and follow the posts it refers

to. Do not try to force him to eat, if you think he will starve

before he will eat, he will. Good for you for figuring this out. I

hope my posts will give you some other ideas to try. Other's have

recently posted on milk (check the subject line for " milk " in just

this last week). Let me know if you would like me to expand on the

eating ideas.

Best Wishes!

Becky

> ,

> I've thought about pulling him off milk products a number of times,

but I'm so afraid since that is where he gets such a great percentage

of his calories. He's never had a lot of GI issues, or ear/sinus

infections. He's been a really healthy kid so far. I'm hoping to

scale back on his milk a lot when I can get him eating more foods,

but right now, he's so limited I'm afraid he'd starve. Despite what

my doctor thinks, this kid really would starve before eating

something he didn't want. He's outlasted me by hours on his hunger

strikes, so the thought of taking away what he will eat just

terrifies me.

>

> He's been doing so extremely well with the enzymes, I want to give

them a little longer. Does anyone have any experience with giving

regular milk with the enzymes?

>

>

>

>

>

> I would not give any of mine a full glass of milk- enzymes or

not, especially if they

> are having increased sensory issues. The majority of my son's

sensory issues went away with the elimination of casein.

> So did ear infections, sinus infections and runny noses. There

was no such thing as SI when mine was small- you got to figure it out

for yourself. Rough and tumble outdoor play/swimming., trampoline,

team sports resolved the rest.

> -GA

>

>

>

>

[Guest guest]

Becky,

I've definitely saved your posts on feeding tips! We almost always have

something new on the table for him to try. Once in a while I will put a bite of

something in his mouth, but very rarely. There are some foods he will only eat

if I put it in his mouth for him, like a tiny piece of ham once in a blue moon.

I guess I figure every bite that I can get into him is important, but the

voluntary ones are the ones that count.

Thanks!

I've posted on eating on post #60942 and follow the posts it refers

to. Do not try to force him to eat, if you think he will starve

before he will eat, he will. Good for you for figuring this out. I

hope my posts will give you some other ideas to try. Other's have

recently posted on milk (check the subject line for " milk " in just

this last week). Let me know if you would like me to expand on the

eating ideas.

Best Wishes!

Becky

[Guest guest]

> The other question I have is that he seems to be having a lot of

sensory issues since we've had him on the enzymes. He's always

rubbed his face on

> things, but he now seems very sensitive to sounds. Although it

has diminished a little in the last week. Could this just be

getting used to the enzymes? We've had him on a full capsule of

each with every meal and snack (Peptizide only if he's just having a

glass of milk) for about a month now. Could the adjustment take

longer than 3 weeks in some kids?

>

Do others see an increase in sensory behaviors after starting

enzymes? My daughter seems to be tracing things with her fingers a

lot and we started enzymes again. We are doing peptizyde a lot.

I have an idea for your milk issue. Slowly start displacing his milk

with rice milk(Say 1/4 rice milk at first).

[Guest guest]

> The other question I have is that he seems to be having a lot of

sensory issues since we've had him on the enzymes. He's always

rubbed his face on

> things, but he now seems very sensitive to sounds. Although it

has diminished a little in the last week. Could this just be

getting used to the enzymes? We've had him on a full capsule of

each with every meal and snack (Peptizide only if he's just having a

glass of milk) for about a month now. Could the adjustment take

longer than 3 weeks in some kids?

>

Do others see an increase in sensory behaviors after starting

enzymes? My daughter seems to be tracing things with her fingers a

lot and we started enzymes again. We are doing peptizyde a lot.

I have an idea for your milk issue. Slowly start displacing his milk

with rice milk(Say 1/4 rice milk at first).

[Guest guest]

> The other question I have is that he seems to be having a lot of

sensory issues since we've had him on the enzymes. He's always rubbed

his face on

> things, but he now seems very sensitive to sounds. Although it has

diminished a little in the last week. Could this just be getting used

to the enzymes?

My son had sound sensitivity for two reasons. First was when he had a

yeast problem. Second was when he improved, and he then perceived

sounds as " loud " , when actually he was perceiving them normally.

>>We've had him on a full capsule of each with every meal and snack

(Peptizide only if he's just having a glass of milk) for about a month

now.

My son needed Peptizyde plus No-Fenol to drink milk, and he still did

not tolerate a full glass, it would give him major ear wax [altho no

behavioral or other issues].

Dana

[Guest guest]

> He's been doing so extremely well with the enzymes, I want to give

them a little longer. Does anyone have any experience with giving

regular milk with the enzymes?

I posted earlier, my son did not tolerate full glasses of milk, even

with enzymes. But you can try organic whole milk if you want, nothing

low fat or with added vitamin A and D. My son had lots of problems

with the added vitamins, but did better with organic whole milk.

Another thing you can try is goat milk with enzymes. Most kids will

tolerate goat milk better than cow milk.

Good luck.

Dana

[Guest guest]

Thanks for the idea! I'm going back and forth between trying potato milk and

rice milk. Do you have any strong feelings either way?

I have an idea for your milk issue. Slowly start displacing his milk

with rice milk(Say 1/4 rice milk at first).

[Guest guest]

Thanks Dana!

I am really hoping that he is just getting 'used' to normal sounds. He's slowly

letting me sing to him again, and accepting more types of music when we go out.

I'm really starting to get hopeful.

I will start making sure that he gets at least Peptizyde and No-Fenol in his

milk and probably through a ZP in for good measure once I get my stock back up!

I am beyond thrilled with the progress I've seen so far. Am I being unrealistic

to hope that he can 'catch up' to where he should be?

Do you have any advice on working with him to respond to requests? (Bring the

ball to mommy, come here, etc.) I'm thrilled we've been able to teach him to

point, so that's my next big challenge.

Thanks!

My son had sound sensitivity for two reasons. First was when he had a

yeast problem. Second was when he improved, and he then perceived

sounds as " loud " , when actually he was perceiving them normally.

>>We've had him on a full capsule of each with every meal and snack

(Peptizide only if he's just having a glass of milk) for about a month

now.

My son needed Peptizyde plus No-Fenol to drink milk, and he still did

not tolerate a full glass, it would give him major ear wax [altho no

behavioral or other issues].

Dana

[Guest guest]

Dana,

Thank you so much. I didn't realize adding vitamins could be a problem. I will

definitely go get some organic milk for him today, and see if I can find some

goats milk. My husband had actually suggested goats milk a while ago, but were

were making so many other changes at the time I wanted to hold off on more. Now

might be a great time!

I posted earlier, my son did not tolerate full glasses of milk, even

with enzymes. But you can try organic whole milk if you want, nothing

low fat or with added vitamin A and D. My son had lots of problems

with the added vitamins, but did better with organic whole milk.

Another thing you can try is goat milk with enzymes. Most kids will

tolerate goat milk better than cow milk.

Good luck.

Dana

[Guest guest]

For requesting: Try something that has a highly desireable outcome

to him. Bring the tape to mommy and I'll put it in the VCR, Bring the

cookies to the table for our snack. Get into his world with what

would be desireable to him and not to you. Make the requests things

that would be natural during a routine that is desireable to him.

Your two examples below would be desireable to us as parents, but

some of these kids don't care (at least mine didn't) about going to a

parent to get a hug or taking the ball to mommy to be able to play.

For my daughter she loved to watch tapes. Before she was able to get

them in the VCR herself I would stay a few feet away from her so when

she indicated she wanted me to play the tape I could say bring it to

mommy and I will put it in the VCR. I also did this with books-bring

the book to mommy and I will read it. After he gets this with things

that are meaningful to him you can slowly start to add it to other

times.

Best Wishes!

Becky

> Thanks Dana!

>

> I am really hoping that he is just getting 'used' to normal

sounds. He's slowly letting me sing to him again, and accepting more

types of music when we go out. I'm really starting to get hopeful.

>

> I will start making sure that he gets at least Peptizyde and No-

Fenol in his milk and probably through a ZP in for good measure once

I get my stock back up! I am beyond thrilled with the progress I've

seen so far. Am I being unrealistic to hope that he can 'catch up'

to where he should be?

>

> Do you have any advice on working with him to respond to requests?

(Bring the ball to mommy, come here, etc.) I'm thrilled we've been

able to teach him to point, so that's my next big challenge.

>

> Thanks!

>

> My son had sound sensitivity for two reasons. First was when he

had a

> yeast problem. Second was when he improved, and he then perceived

> sounds as " loud " , when actually he was perceiving them normally.

>

>

> >>We've had him on a full capsule of each with every meal and

snack

> (Peptizide only if he's just having a glass of milk) for about a

month

> now.

>

>

> My son needed Peptizyde plus No-Fenol to drink milk, and he still

did

> not tolerate a full glass, it would give him major ear wax [altho

no

> behavioral or other issues].

>

> Dana

>

>

>

>

>

[Guest guest]

Thanks! I'll keep trying. I've been trying it with everything he wants and

it's like he just doesn't understand what I'm saying. But he used to do it, so

that's what's so frustrating. It's hard because he's making such wonderful

progress is so many areas, it's hard to understand why others are the same. But

you're right, I'll focus on the things he really cares about and see if that

helps.

Thanks!

Re: Another Intro - Long

For requesting: Try something that has a highly desireable outcome

to him. Bring the tape to mommy and I'll put it in the VCR, Bring the

cookies to the table for our snack. Get into his world with what

would be desireable to him and not to you. Make the requests things

that would be natural during a routine that is desireable to him.

Your two examples below would be desireable to us as parents, but

some of these kids don't care (at least mine didn't) about going to a

parent to get a hug or taking the ball to mommy to be able to play.

For my daughter she loved to watch tapes. Before she was able to get

them in the VCR herself I would stay a few feet away from her so when

she indicated she wanted me to play the tape I could say bring it to

mommy and I will put it in the VCR. I also did this with books-bring

the book to mommy and I will read it. After he gets this with things

that are meaningful to him you can slowly start to add it to other

times.

Best Wishes!

Becky

> Thanks Dana!

>

> I am really hoping that he is just getting 'used' to normal

sounds. He's slowly letting me sing to him again, and accepting more

types of music when we go out. I'm really starting to get hopeful.

>

> I will start making sure that he gets at least Peptizyde and No-

Fenol in his milk and probably through a ZP in for good measure once

I get my stock back up! I am beyond thrilled with the progress I've

seen so far. Am I being unrealistic to hope that he can 'catch up'

to where he should be?

>

> Do you have any advice on working with him to respond to requests?

(Bring the ball to mommy, come here, etc.) I'm thrilled we've been

able to teach him to point, so that's my next big challenge.

>

> Thanks!

>

> My son had sound sensitivity for two reasons. First was when he

had a

> yeast problem. Second was when he improved, and he then perceived

> sounds as " loud " , when actually he was perceiving them normally.

>

>

> >>We've had him on a full capsule of each with every meal and

snack

> (Peptizide only if he's just having a glass of milk) for about a

month

> now.

>

>

> My son needed Peptizyde plus No-Fenol to drink milk, and he still

did

> not tolerate a full glass, it would give him major ear wax [altho

no

> behavioral or other issues].

>

> Dana

>

>

>

>

>

[Guest guest]

Keep in mind that if he's making progress in some areas that is

good. A child can't make progress in all areas at the same time. I

will sometimes just work on the things my daughter is currently

making progress in and let some other things rest that she's

currently not making any progress in (kind of like picking my

battles). My daughter seems to move through different stages so with

her I know she will always come back to other areas. This big

journey is very frustrating. I keep trying to turn my frustrations

into a positive in that I will learn something from each one. Hang

in there! And keep posting.

Becky

> > Thanks Dana!

> >

> > I am really hoping that he is just getting 'used' to normal

> sounds. He's slowly letting me sing to him again, and accepting

more

> types of music when we go out. I'm really starting to get

hopeful.

> >

> > I will start making sure that he gets at least Peptizyde and No-

> Fenol in his milk and probably through a ZP in for good measure

once

> I get my stock back up! I am beyond thrilled with the progress

I've

> seen so far. Am I being unrealistic to hope that he can 'catch

up'

> to where he should be?

> >

> > Do you have any advice on working with him to respond to

requests?

> (Bring the ball to mommy, come here, etc.) I'm thrilled we've

been

> able to teach him to point, so that's my next big challenge.

> >

> > Thanks!

> >

> > My son had sound sensitivity for two reasons. First was when

he

> had a

> > yeast problem. Second was when he improved, and he then

perceived

> > sounds as " loud " , when actually he was perceiving them

normally.

> >

> >

> > >>We've had him on a full capsule of each with every meal and

> snack

> > (Peptizide only if he's just having a glass of milk) for

about a

> month

> > now.

> >

> >

> > My son needed Peptizyde plus No-Fenol to drink milk, and he

still

> did

> > not tolerate a full glass, it would give him major ear wax

[altho

> no

> > behavioral or other issues].

> >

> > Dana

> >

> >

> >

> >

> >

[Guest guest]

> I am really hoping that he is just getting 'used' to normal sounds.

He's slowly letting me sing to him again, and accepting more types of

music when we go out. I'm really starting to get hopeful.

For my son, this period of adjustment lasted about 3 months. Good luck.

> I will start making sure that he gets at least Peptizyde and

No-Fenol in his milk and probably through a ZP in for good measure

once I get my stock back up! I am beyond thrilled with the progress

I've seen so far. Am I being unrealistic to hope that he can 'catch

up' to where he should be?

You are not being unrealistic. Congrats!

> Do you have any advice on working with him to respond to requests?

(Bring the ball to mommy, come here, etc.) I'm thrilled we've been

able to teach him to point, so that's my next big challenge.

Start with one word at a time. For example, " ball " . Teach him to

point to a ball, or otherwise indicate that he knows what " ball "

means. Then " give ball " with your hand out. Then " mommy " identified

just like " ball " was identified. Then " give ball mommy " . Etc. You

might need hand-over-hand at first.

" Come here " I started by pointing to my feet, saying " come here " , and

then physically bringing him to the exact place I pointed to.

This is what I had to do with my son, but he was very low functioning

when I started, yours might not need this much.

Dana

[Guest guest]

> Thank you so much. I didn't realize adding vitamins could be a problem.

Vitamins tend to be a problem with phenol sensitive kids, and phenols

was my son's number one problem.

Dana

[Guest guest]

Becky,

I really needed to hear that. It's so easy to get caught up in everything he's

not doing, or not understanding that you can lose track of the progress he's

made just in the last month. What I am trying to do is pick one or two things

the teachers are working on with him and really stress those with him. That way

it's as consistent as possible and he gets positive feedback semi-quickly. I

know I've only been posting a few days, but already I'm worried I'm posting too

much, but I just appreciate having someone to talk to about this, and getting

such wonderful advice.

Re: Another Intro - Long

Keep in mind that if he's making progress in some areas that is

good. A child can't make progress in all areas at the same time. I

will sometimes just work on the things my daughter is currently

making progress in and let some other things rest that she's

currently not making any progress in (kind of like picking my

battles). My daughter seems to move through different stages so with

her I know she will always come back to other areas. This big

journey is very frustrating. I keep trying to turn my frustrations

into a positive in that I will learn something from each one. Hang

in there! And keep posting.

Becky

[Guest guest]

Dana,

You just made me feel so much better! I was worried because it's been about a

month on full enzymes now and we are still having some of the issues associated

with getting used to them. I was under the impression it would only take 3

weeks. 3 months sounds much more in line with what we are seeing with the sound

sensitivity and some of the stimming. It also helps to put in perspective some

of his language processing problems. In my mind, if he's having such a huge

adjustment to the world 'normalizing', it must have been very distorted to start

with.

I really appreciate you breaking the instructions down so far. According to the

report, my son is further behind than I thought, so I need to back way up in

trying to bring him out. He just fell asleep now so I am looking forward to

trying tomorrow!

> I am really hoping that he is just getting 'used' to normal sounds.

He's slowly letting me sing to him again, and accepting more types of

music when we go out. I'm really starting to get hopeful.

For my son, this period of adjustment lasted about 3 months. Good luck.

> I will start making sure that he gets at least Peptizyde and

No-Fenol in his milk and probably through a ZP in for good measure

once I get my stock back up! I am beyond thrilled with the progress

I've seen so far. Am I being unrealistic to hope that he can 'catch

up' to where he should be?

You are not being unrealistic. Congrats!

> Do you have any advice on working with him to respond to requests?

(Bring the ball to mommy, come here, etc.) I'm thrilled we've been

able to teach him to point, so that's my next big challenge.

Start with one word at a time. For example, " ball " . Teach him to

point to a ball, or otherwise indicate that he knows what " ball "

means. Then " give ball " with your hand out. Then " mommy " identified

just like " ball " was identified. Then " give ball mommy " . Etc. You

might need hand-over-hand at first.

" Come here " I started by pointing to my feet, saying " come here " , and

then physically bringing him to the exact place I pointed to.

This is what I had to do with my son, but he was very low functioning

when I started, yours might not need this much.

Dana

[Guest guest]

,

I think you and some of the other parents here have pretty much convinced me

that I'm going to have to take away the milk. I want to wait just a week or two

to give everything else a chance to stabilize and then we're going to jump. It

seems like a big, scary step, but it sounds like we definitely have to try. If

I can get him eating so many new foods, it would be well worth the terror!

I would still encourage you to try to cutout the milk, maybe start with 1/8

rice milk (not Rice Dream) 7/8 milk and keep upping it as it is taken. I

sounded just like you in June and almost every week now Austin surprises me and

tries something new. In the last few weeks he has tried Apples, ham, bacon,

carrots, and eggs. things he would have never ever eaten in June.

[Guest guest]

Hi there,

I live in the D.C. area, and can offer some experiences and opinions.

Take them as just that, what doesn't work for me, might work for you

and your child. I'm sure that different people have had different

experiences with the same professional.

It is so great that you have an on-the-ball pediatrician! You will be

happy you are starting earlier. We had a whole year of vaguely

knowing something wasn't right before we started anything.

I have too many cooks in the pot, and not enough direction, but I'm

working on sorting this out. I think there is good advice to be had,

and certainly very good therapeutic support out there. In the end,

you will end up being the director of this very big project.

First, I saw a nutritionist, Dana Laake. She looked at my son (who is

4), and spent a long time talking to me. She recommended two lab

tests, which we did, and don't regret at all. The hair test at DDI is

cheap and very informative. She also recommended a stool test. Then

she came up with a very detailed supplement plan which she updated

after the lab results. She has since updated twice. I have not taken

her advice a few times, but have always come back to her plan. She

really knows her stuff, and I have heard good things about

Dorfman too. What I expected, and I did not get, was more help in

what to feed my child!! I had already implemented a GFCF, soy and

corn free diet when I saw her. He has numerous food sensitivities,

and I didn't get any help or guidance in figuring this out. She did

tell me to wait on testing foods until his gut had healed more, which,

retrospectively, was good advice.

I think the biggest problem that I had with her was understanding why

she was giving me the program she suggested. She does talk and

explain a lot, but I guess I didn't really understand what she was

telling me. It was only after reading a lot on my own that I would

think, " Oh, that's why Dana told me to do this. " Mind you, she didn't

not recommend Houston enzymes, and this product had the BIGGEST effect

after GFCF. I told her I was on them, and she told me to keep him on

them, but she didn't recommend this first. Second, after our first

round of supplements, she compounded a huge list of supplements that I

never gave to my son. He is very sensitive, and this just wasn't the

right approach for him. She backed off this approach, but was good at

guiding me in what to try first.

My son is also under the care of Dr. Pamela Compart, a DAN!

developmental pediatrician in Columbia, MD. She is a good

diagnostician, and she really listens to you and your child. After

seeing Dr. Compart, my son commented, " She's a very kind woman. " She

does a developmental evaluation, she does some lab testing, and she is

a good director if you need some more support about what to do first,

second, etc. In the end, I find I am more in agreement about Dana

Laake's approach, but Dr. Compart is always open to listening and

considering your approach and your gut. Also, a pediatrician is able

to order blood work and provide prescriptions if that's what you need!

We had my son evaluated by an O.T. Lynn Balzer- (who was Carol

Kranowitz's partner). It was not a good experience for my child (but

I do know a friend's child asked to go back again, so this could be

just my experience). On the other hand, she recommended the GFCF diet

right away, and that gave us astonishing gains! She also did a fairly

thorough evaluation, better than anything we've received since by

anyone. We use Integrated Therapy Services in Kensington, and I

really recommend this group. They definitely know Sensory Integration

stuff. We also did a camp through Leaps and Bounds in D.C., and that

was fairly good. What I did for O.T. recommendations was to call the

directors of nursery schools in my area, especially the schools that I

thought were very good. They have MANY kids coming in with all sorts

of issues, and they often have a very good idea of who's good.

My speech therapist is associated with the Ivymount school, and she is

very good and experienced with dealing with pragmatic language issues.

My insurer pays for some of this stuff, but I am also looking to see

what the county provides. Many people I know have had very good

experiences with the Montgomery County autism preschool programs. We

got a later start than you did, but I would look into this if you

haven't thought about it. All of this stuff can be VERY expensive.

Feel free to contact me offline!

Judy

I had my son evaluated by an Occupational

> Hi. I've been on the list for about a month now, reading everything

and trying to get a handle on as much as I can about the things

affecting our

> kids. At my son's two year checkup (end of May) the doctor noticed

a lot of echolalia and referred us to the Kennedy Krieger Institute in

Baltimore for

> evaluation. We haven't gotten the official diagnosis yet, but I'm

pretty sure he'll get the full autism diagnosis.

>

> In June I took him off all food coloring and added a better

multivitamin/mineral supplement. That seemed to really help with the

> echolalia, but not with many of the other symptoms. I also took him

off of Fluoride, and that helped a little.

>

> We've had him on HNI enzymes starting the beginning of August. I

started him slowly, adding each one at a time, half dose to full dose.

He seems to

> be doing much better, but still has a long way to go. He's starting

to point to things, and is much more observant about his surroundings.

He's actually started to play on the playground equipment, going UP

the slide too! He still doesn't follow basic requests like 'come

here', or 'bring the ball to mommy', but we'll keep working on it.

>

> He has always been a very picky eater (since we started solids at

least, he was great with jarred baby food) and I have an appt with

Dorfman (a

> nutritionist on the DAN! list)in October. I am hoping she'll be

able to give us some good advice to other testing and interventions.

>

> I guess I am wondering if anyone here can help me know what to

expect at the appt with , and also if anyone can recommend any

doctors in the DC

> metro area that they've had good experiences with?

>

> The other question I have is that he seems to be having a lot of

sensory issues since we've had him on the enzymes. He's always rubbed

his face on

> things, but he now seems very sensitive to sounds. Although it has

diminished a little in the last week. Could this just be getting used

to the enzymes? We've had him on a full capsule of each with every

meal and snack (Peptizide only if he's just having a glass of milk)

for about a month now. Could the adjustment take longer than 3 weeks

in some kids?

>

> Sorry this is so long, but I have so many questions!

>

>

[Guest guest]

Judy,

Thank you so much for your answer! Some days I feel like we are really making

progress, and others seem so full of despair. What really keeps me going is

just looking at my happy, sweet, gorgeous little boy and knowing that no matter

what the diagnosis is, he is still that same little guy. The doctor at Kennedy

Krieger recommended Dr. Compart, and so did the county OT, so I guess three

recommendations is pretty good! I tried calling once but couldn't get through

and was afraid to leave a message. I'll try calling again on Monday.

I'm beginning to think that most of 's major issues are sensory-related.

His receptive language is pretty far behind, but if he has trouble with sound

being distorted, that would make sense. His feeding issues are definitely

sensory related as well. We had a REALLY good OT evaluation at KKI yesterday,

so I am hoping to be able to get him into regular therapy there. Do you have

any contact information for Integrated Therapy Services? I can't seem to find a

web site for them. Feel free to email me privately, if you do (or for any other

reason).

There was a seminar this week called Nutrition Therapy for Children with ASD

that was really good. It helped put a lot of the things I hear about on the

list in perspective. Between the seminar and this list I really want to start

him on CLO. She said that a good dosage to start with is 1/4 tsp per day. Do

you know if it's OK to mix it in with his liquid vitamin? I know the oil won't

actually mix, but I'm hoping the tastes will combine enough that I could get it

into him.

So far I've been really pleased with all the help we've gotten from the

Montgomery County Infants & Toddlers program. I just think needs more

services than they can provide. Of course I'm also worried about being able to

find enough time/money for private sessions, but we'll do whatever he needs. He

won't turn 3 until next May, but we are already starting to wonder about what

will happen after he is too old for Infants and Toddlers. There are a few

places with open houses coming up, so we'll probably go to those. Any

suggestions? What are the preschool autism programs like?

I live in the D.C. area, and can offer some experiences and opinions.

Take them as just that, what doesn't work for me, might work for you

and your child. I'm sure that different people have had different

experiences with the same professional.

It is so great that you have an on-the-ball pediatrician! You will be

happy you are starting earlier. We had a whole year of vaguely

knowing something wasn't right before we started anything.

I have too many cooks in the pot, and not enough direction, but I'm

working on sorting this out. I think there is good advice to be had,

and certainly very good therapeutic support out there. In the end,

you will end up being the director of this very big project.

First, I saw a nutritionist, Dana Laake. She looked at my son (who is

4), and spent a long time talking to me. She recommended two lab

tests, which we did, and don't regret at all. The hair test at DDI is

cheap and very informative. She also recommended a stool test. Then

she came up with a very detailed supplement plan which she updated

after the lab results. She has since updated twice. I have not taken

her advice a few times, but have always come back to her plan. She

really knows her stuff, and I have heard good things about

Dorfman too. What I expected, and I did not get, was more help in

what to feed my child!! I had already implemented a GFCF, soy and

corn free diet when I saw her. He has numerous food sensitivities,

and I didn't get any help or guidance in figuring this out. She did

tell me to wait on testing foods until his gut had healed more, which,

retrospectively, was good advice.

I think the biggest problem that I had with her was understanding why

she was giving me the program she suggested. She does talk and

explain a lot, but I guess I didn't really understand what she was

telling me. It was only after reading a lot on my own that I would

think, " Oh, that's why Dana told me to do this. " Mind you, she didn't

not recommend Houston enzymes, and this product had the BIGGEST effect

after GFCF. I told her I was on them, and she told me to keep him on

them, but she didn't recommend this first. Second, after our first

round of supplements, she compounded a huge list of supplements that I

never gave to my son. He is very sensitive, and this just wasn't the

right approach for him. She backed off this approach, but was good at

guiding me in what to try first.

My son is also under the care of Dr. Pamela Compart, a DAN!

developmental pediatrician in Columbia, MD. She is a good

diagnostician, and she really listens to you and your child. After

seeing Dr. Compart, my son commented, " She's a very kind woman. " She

does a developmental evaluation, she does some lab testing, and she is

a good director if you need some more support about what to do first,

second, etc. In the end, I find I am more in agreement about Dana

Laake's approach, but Dr. Compart is always open to listening and

considering your approach and your gut. Also, a pediatrician is able

to order blood work and provide prescriptions if that's what you need!

We had my son evaluated by an O.T. Lynn Balzer- (who was Carol

Kranowitz's partner). It was not a good experience for my child (but

I do know a friend's child asked to go back again, so this could be

just my experience). On the other hand, she recommended the GFCF diet

right away, and that gave us astonishing gains! She also did a fairly

thorough evaluation, better than anything we've received since by

anyone. We use Integrated Therapy Services in Kensington, and I

really recommend this group. They definitely know Sensory Integration

stuff. We also did a camp through Leaps and Bounds in D.C., and that

was fairly good. What I did for O.T. recommendations was to call the

directors of nursery schools in my area, especially the schools that I

thought were very good. They have MANY kids coming in with all sorts

of issues, and they often have a very good idea of who's good.

My speech therapist is associated with the Ivymount school, and she is

very good and experienced with dealing with pragmatic language issues.

My insurer pays for some of this stuff, but I am also looking to see

what the county provides. Many people I know have had very good

experiences with the Montgomery County autism preschool programs. We

got a later start than you did, but I would look into this if you

haven't thought about it. All of this stuff can be VERY expensive.

Feel free to contact me offline!

Judy