new diagnosis

[Guest guest]

Amber, I think you need to seek out a specialist in autistic

disorders for a second opinion. My son is four and has been

confidently ds'd with AS. If there is any possibility of this being a

certain thing, you need to have proper and direct treatment online

right away. It will make for easier transition, phase to phase later

on. It will be better to know what you are dealing with now rather

than waiting a few years to get your answers. Waiting a " few years "

is preposterous in any place. Don't stand for it. Best wishes and

prayers to you.

Dave

>

> Well, the new doctor thinks that it's possible that Seth has AS but

he

> isn't sure and says he would be reticient to give him any diagnosis

at

> all right now and wants us to bring him back yet again in a few

years

> when he is socializing more. He said he exhibits signs of AS,

> oppositional defiance synrome and ADHD but lacks what he sees as

major

> proponiants to all of them so he just wants to wait. He said he may

> have been misdiagnosed before with the AS but it's hard to say.

Then

> he gave me a pamphlet about how lots of gifted children (I guess

> classified as having an IQ above 130) get misdiagnosed with a number

> of problems including AS, ADHD and oppositional definance syndrom to

> name a few. he told me he thought he was not NT but that Seth was a

> mystery and he just didn't know.

>

> I asked him what I was supposed to do in the interim to help him and

> us cope and he said that he thought not sneding him to school was a

> good thing and that he wasn't ready for it so I will continue my

plan

> to home school him. he also recommended private school in his later

> years. but for now he said we would just have to keep trying new

> things to teach him and seeing if they work. I had hoped for

someting

> more but I guess in my head until we get another real diagnosis I'm

> going to go ahead and stick with AS.

>

> Amber

>

[Guest guest]

It is so nice to hear a professional talk about Homeschooling as he

did!!!

Great!!!!

Not exactly what you wanted to hear, but boy does it sound

interesting:)

Thanks for sharing that

>

> Well, the new doctor thinks that it's possible that Seth has AS

[Guest guest]

A few years seems too long to wait. I'd seek a second opinion. If

their main concern is social skill for now, you could seek out a

private social group to enroll him in. They could be a wealth of

info. Have you asked the school for testing? You have a right to

have them test for this under Federal Law. My son's school provides

2 seperate social groups for him in school (1 informal for kids that

don't necessarily have an IEP, and 1 that is mandated by his IEP). I

found one that meets privately after school once weekly that I'm

going to enroll him in. I figure at the very least, he will meet

some other kids from our district that he will hook up with in

intermediate/middle school. Like someone else said. They can have

brilliant math skills from an excellent school system, but if they

can't carry on a conversation or get along with co-workers, that

might be a problem. So I'm focusing on that.

>

> Well, the new doctor thinks that it's possible that Seth has AS

but he

> isn't sure and says he would be reticient to give him any

diagnosis at

> all right now and wants us to bring him back yet again in a few

years

> when he is socializing more. He said he exhibits signs of AS,

> oppositional defiance synrome and ADHD but lacks what he sees as

major

> proponiants to all of them so he just wants to wait. He said he

may

> have been misdiagnosed before with the AS but it's hard to say.

Then

> he gave me a pamphlet about how lots of gifted children (I guess

> classified as having an IQ above 130) get misdiagnosed with a

number

> of problems including AS, ADHD and oppositional definance syndrom

to

> name a few. he told me he thought he was not NT but that Seth was

a

> mystery and he just didn't know.

>

> I asked him what I was supposed to do in the interim to help him

and

> us cope and he said that he thought not sneding him to school was a

> good thing and that he wasn't ready for it so I will continue my

plan

> to home school him. he also recommended private school in his

later

> years. but for now he said we would just have to keep trying new

> things to teach him and seeing if they work. I had hoped for

someting

> more but I guess in my head until we get another real diagnosis I'm

> going to go ahead and stick with AS.

>

> Amber

>

[Guest guest]

Hi All, My name is Candyce. I have two children-Lily two years old

and Eddie Four years old. Eddie was diagnosed in April, with Autism.

This is all very new for us. Forgive me if my computer edicut is not

up to par.This is new also,and very helpful with our resent

diagnosis. I'm learning who my friends are pretty quickly. RDI is our

treatment plan. Dr. Will Staso and have helped me a great

deal. Also the ladies from the Autism Society in Santa Barbara. Thank

you also to Kathy for your honosty and guidence. We are trying to get

services from TCRC, with a bad experience from the start, it is slow

going. After asking for their help, before Eddie turned three, they

pulled the 120 day rule on us. They turned us over to SBEO. Thats

where we found Dr. Will. We are in a special day class 4 hrs. a day,

We have speech therapy through private insurance, and have just

started BT. We are trying to get O.T. either through the school or my

private insurance-whichever comes first. Our treatment plan is RDI

and we are trying GSF/CSF. It is a very difficult road. The DAN Dr.

in town won't see us because of our insurance. Tri-Counties sent a

mom that I met to the RDI workshop for parents in L.A.. My sevice

coordinator informed me that they absolutely did not. Now the whole

Clinical team wants to see me so that they can inform me of the

services that I am aloud to receive,(which only took a year and a

half!). Sandy is going to whip it out on them for us. YEY!!!!!!

Thanks for letting me vent. I'm learning from you all. The chealation

thing is very intense,May our Higher Being be with us all. I hope to

see you all at the parent task force meeting on Oct.17,or the Lompoc

Support meeting. Love to all. Candyce

-- In , " nohg4me2 " <kdiboo13@...> wrote:

>

> My almost 11 yo daughter fell and broke one of the bones in her

> forearm last week. The cast will be on about 4 weeks. She has

always

> been NT (albeit Hg and Pb-poisoned), and has been chelated with

> DMSA/ALA per your protocol for the last 5 years, approx.100 rounds.

> Any suggestions to help heal her fracture?

>

> She currently takes supplements 3 x day (4 x day on round): Mg, Ca,

> Zn, digestive enzymes, Vit C, Vit E, flax, EPO, and B-50. She eats

a

> standard diet.

>

> We haven't chelated in our house since August. Is it OK to chelate

> while she's mending? (wondering when this is ever going to end....)

>

> And finally, I reduced the zinc dose from 90 mg (3/30 mg doses per

> day) to 60 mg (2 doses) for her along with her more toxic siblings:

a

> twin brother and older sister. By way of elimination, I recently

> figured out that zinc, calcium, and the 1/2 of a B-50, in the

> mornings, made all three kids have trouble concentrating in the

> classroom.

>

> Is 30 mg Zn per dose too high for an almost 11 yo who weighs 80

lbs?

> Since they don't take it before school, I feel like I'm trying to

> cram zinc into them from 4 pm until 9 pm and 3 doses in that

timespan

> seems like ALOT. I just replaced their vit. C with one that

includes

> a mere 2 mg zinc in the formula.

>

> On the flip-side, since reducing the zinc, the big white marks on

her

> fingernails and swollen lympth nodes in her neck have returned

(just

> like the other times I've tried reducing Zn). The kids are

currently

> at 50 mg ALA and 25-50 mg DMSA every 2.5 hours day/ 3 hours night.

>

> Any ideas? Am I screwing something up here? Thanks so much,

Andy.

> You are the BEST! I owe you.....

>

> Kath

>

> P.S. I am happy to report that after 5 years of chelating, all 3

> kids are as typical a group of siblings as they could possibly be.

> My son no longer has an IEP and my oldest daughter, who was once

> locked into her own world is turning into a social butterfly at the

> ripe old age of 13. Andy, there isn't a day that goes by that I

don't

> think of you and feel thankful that you happen to exist on this

> planet in my lifetime for me to benefit. It's been a long, arduous,

> and costly journey but worth it by every measure. I couldn't have

> done any of it without you. Thanks again.

>

[Guest guest]

Hi - I'm mom to a 3 yr old just diagnosed with apraxia. His diagnosis may be a

bit late, because I adopted him from Russia 1 yr ago, and we weren't surprised

obviously that he was not speaking english (and had been told he was saying

simple russian words). So he's actually close to 3 1/2 and can't really say any

words. He's getting close to mama and up, but can't always do them.

I will research all information available, but wondered if any more experienced

folks could answer 3 quetions for me:

1. Best advice you can give, especially on treatment

2. Boardmaker - do people use these at home and if so where did you get it?

3. Omega3? I read an article in prevention magazine today about omega 3 and

it's possible connection to helping with brain issues. Anyone know more or have

personal experience?

Hopefully I'm not breaking any rules, or stepping on any hornet's nests but I'm

just trying to figure out how to help my son as much as possible and as quickly

as possible to make up for all the lost time.

Thanks. Beth

[Guest guest]

I would spend TIME with him, playing at his level, saying words over and over.

For example, he might like cars, so you play cars with him, making the sound of

a car, saying " car " - obviously. And then it's his turn, he does the same. Back

and forth. Play turn-taking games. Get a Quaker oats box - hold it to your face

and say " ah " into the box, then hand it to him and say " you say ah! " He tries,

then hands it back. You say ah and vary it and tell him to do the same. Back and

forth, back and forth. I learned this method from Dr. Mac who is an

expert on late talkers. His website is: www.jamesdmacdonald.org. His book is

Communicating Partners.

Friends of ours adopted kids from Russia - one girl at age 2 was diagnosed with

lots of problems. Today (8 years later) she's doing wonderfully. Another girl

they adopted (from Mexico) at age 7 was hardly speaking. Now 2 years later she

speaks 3 languages! I think the love and attention such kiddies get can do a

whole lot. Of course, I'm not saying that apraxia is fixed with just that! I am

only sharing this with you in case it is of encouragement.

>

> Hi - I'm mom to a 3 yr old just diagnosed with apraxia. His diagnosis may be

a bit late, because I adopted him from Russia 1 yr ago, and we weren't surprised

obviously that he was not speaking english (and had been told he was saying

simple russian words). So he's actually close to 3 1/2 and can't really say any

words. He's getting close to mama and up, but can't always do them.

>

> I will research all information available, but wondered if any more

experienced folks could answer 3 quetions for me:

>

> 1. Best advice you can give, especially on treatment

> 2. Boardmaker - do people use these at home and if so where did you get it?

> 3. Omega3? I read an article in prevention magazine today about omega 3 and

it's possible connection to helping with brain issues. Anyone know more or have

personal experience?

>

> Hopefully I'm not breaking any rules, or stepping on any hornet's nests but

I'm just trying to figure out how to help my son as much as possible and as

quickly as possible to make up for all the lost time.

>

> Thanks. Beth

>

[Guest guest]

hi Beth, welcome!

your son is a lucky guy for getting a mom like you! You know something is up and

you're doing something about it. to answer your questions as best i can:

1 - find someone who knows about apraxia to assess your son (easier said than

done sometimes!)

2 - boardmaker program - not really necessary as there are a ton of free sites

on the web if you

      just google " free pecs " .  They are just pictures that you use to help your

son communicate.

      Any SLP can help you set up a " pecs book " .  They are great for the young

children who are

      either getting frustrated because they are not being understood or they

can be used as a visual

       schedule for things you will be doing in a day so that kids know what to

expect.

3 - I use the nordic naturals. start with 2 capsules complete omega 3-6-9 and 1

capsule proepa.

     this is the formula that works for most.

i hope this gets you going and if you have any questions everyone here is great

at answering.

hth

sandy

________________________________

From: easimerm <easimerm@...>

Sent: Mon, October 26, 2009 6:58:00 PM

Subject: [ ] new diagnosis

 

Hi - I'm mom to a 3 yr old just diagnosed with apraxia. His diagnosis may be a

bit late, because I adopted him from Russia 1 yr ago, and we weren't surprised

obviously that he was not speaking english (and had been told he was saying

simple russian words). So he's actually close to 3 1/2 and can't really say any

words. He's getting close to mama and up, but can't always do them.

I will research all information available, but wondered if any more experienced

folks could answer 3 quetions for me:

1. Best advice you can give, especially on treatment

2. Boardmaker - do people use these at home and if so where did you get it?

3. Omega3? I read an article in prevention magazine today about omega 3 and it's

possible connection to helping with brain issues. Anyone know more or have

personal experience?

Hopefully I'm not breaking any rules, or stepping on any hornet's nests but I'm

just trying to figure out how to help my son as much as possible and as quickly

as possible to make up for all the lost time.

Thanks. Beth

__________________________________________________________________

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[Guest guest]

Hi Deborah,

You can see from post I left for Beth, I also have a adopted son with Apraxia.

He came home 2 years ago from Kazakstan at 9 months old. That is wonderful you

had a Russian trained doctor who picked up right away, your daughter was speech

delayed. In the beginning, everyone kept telling me my son was just quiet

because he spent his first 9 months in a babyhouse in Kaz. I knew in my heart

and soul something else was going on. My son was DEAD quiet till he was around

20 months old and even then very little came out of his month till last spring

at 27 months. He now uses about 30 to 40 words all the time and puts some 2

words together sometimes but has you can see he is still way off the mark of

where he should be for his age. It sounds like your daughter is doing great.

I would love to talk with you off line, I think we could share a lot in common.

My email is carolyn.tarpey@...

I hope to hear from you soon,

Carolyn

________________________________

From: DEBORAH ZEMIETRA <dzem@...>

Hi,

I have a 3.5 yr old daughter also diagnosed with apraxia. We adopted her from

Russia at 18 months old,

[Guest guest]

Beth:

Sounds like you are on the right track with your ideas for next steps for your

son. My son is 2.5 yrs old with apraxia and I can tell you what's working well

for us:

1. Fish Oil: We (and many many other people in our situation) use Nordic

Naturals fish oils. I use the Omega 3,6,9 Complete liquid. I buy the adult

version since it's the EXACT same as the Junior and less $$ per ounce, but we

just give a half a dose (1/2 tsp) daily. Although we're about to increase that

amount. we call it 's Magic Fish juice and if he drinks it he gets a

flintstone vitamin - works like a charm. There is no harm in giving your child

a high quality fish oil so I'd definitely do it. So many people have seen

amazing results when once their children began taking the supplement (after a

few weeks)

2. We did the DVD consultation with Kaufman and honestly, I kind of thought it

was a rip-off...UNLESS you are plan to go through one of her intensive sessions.

We were considering attending a week long session 1:1 w/her, but decided against

it last minute. The DVD consultation consisted of her calling me saying " yes,

your son would qualify to come up here and work 1:1 with me. " When I asked her

if she could tell by the video if he had apraxia or anything else she said " I

can't say much more because I'd need to see him in person " (which is

understandable I suppose). She said she thought he would benefit from the

Kaufman cards/method and I guess the great thing if we went to visit w/her is

she would teach me how to use the cards as best she could. If you do end up

working with her, I'd love to hear if you think it was beneficial.

3. P.R.O.M.P.T: I CANNOT say enough great things about this method. If you

have any way of getting this going with your son I would say DO IT DO IT DO IT!

Our son has made incredible progress with a Prompt certified therapist 2x/wk (50

minute sessions). This is a very intense/aggressive approach for speech

therapy, but if the kid is willing (or will eventually get used to it) it is a

miracle technique. For my son, it seemed to make all the difference in the

world for him to be able to feel what " correct " placement of his

mouth/tongue/etc was. Once he felt it, his speech came along a TON. We've only

been doing it 3 months and his speech abilities have literally exploded. You can

go to promptinstitute.com and send them zip codes from your area and they'll

send you a list of certified instructors. NO QUESTION THE BEST THING WE DID FOR

OUR LITTLE MAN!

4. Our next step is food allergies as well. I've heard figuring this part out

has given some kids the boost they needed and hasn't affected other kids at all.

Igg testing is so shotty it's feels too hit or miss, so if you're going to do

it, seems like the best way is to do the food elimination diet, which is not

easy (at least for us since our son is SO SO picky).

5. I have no idea all of the symptoms/challenges that your son faces, but you

should definitely read the new study that came out suggesting a potential link

of malabsorption with apraxia symptoms. If your child falls in this category,

it could be a HUGE breakthrough. If you send me your personal email address,

I'll send you the study, as well as some specific blood work-ups/lab recos that

are suggested in the study so you can potentially get to the bottom of what's

going on with your kiddo. We started the testing with our son, and it doesn't

look like he falls into the category of children that the malabsorption study

identified, but who knows about yours?

Good luck in your journey and feel free to email me personally so I can send you

all the specifics I mentioned above: svraciu@...

Sharon

ps - If your therapist isn't well versed with apraxic children, I'd work to find

someone who is. It's not easy finding (and getting in with) a good therapist,

but it is critical to work with someone who knows the ins and outs of apraxic

children. If you live near the Cincinnati area I have an INCREDIBLE Prompt

trained therapist (who happens to be a feeding specialist as well) that you

should work with.

>

> Thanks all - you've given me both great support and some good ideas.

>

> To give a little more background

>

> My son was adopted at 2 yrs 3 months.

> He's my 3rd adopted child and I knew the system so was able to get him right

into speech, ot and pt. He's been in all 3 for the past year.(prior to school

starting it was 2x per week)

>

> I also had an IEP done through the school during the summer, he qualified

obviously for an early education program, and is now in school 4 days per week 3

hrs a day. It's a special needs class with 2 teachers and 3 kids. He gets

pulled out weekly for 2x speech, 1x ot, 1x pt, 1x aqua therapy, and then there's

an ot/speech group session. Additionally we've been doing 1x private speech, ot

and pt per week, and now are adding back a second private speech per week.

>

> We have had his hearing tested and is now fine after we put in tubes in June.

We also removed his tonsils and upper adenoids since they were huge and possibly

getting in the way of his speech.

>

> We also spend a lot of time 1 on 1 with him doing homework from therapy

including a special facial massage 3 times a day.

>

> With all of this we have had almost not progress. He's picked up signs pretty

well, but speech isn't coming very much. I feel the need to step it up with

apraxia-specific therapies.

>

> our speech therapist I think is very good, has some but not a lot of

experience with apraxia, but is very dedicated and open to learning.

>

> I found this group yesterday and did several hours of research last night and

came up with a list of things I want to learn more about including but not

limited to

> Prompt

> Kaufman cards

> Testing for food allergies

> Doing a dvd consultation with Kaufman

> Fish oil/omega 3

> Bite blocks

> Cranial sacral massage

>

> I will be reading this board voraciously and trying everything I can, because

he's such a sweet kid, and he is trying to hard, and getting very frustrated and

it's just not coming.

>

> Open to any and all suggestions from those who have made progress.

>

> Thanks - Beth

>

[Guest guest]

Wow, you're doin' good!

I would recommend teaching him to READ. I used the Doman method (What To Do

About Your Brain-Injured Child, How To Teach Your Baby to Read) and it WORKED!

Our son was 3 at the time and, since they tell you not to test them, I didn't

know for a year that he had learned all the words I taught him. It is very good

for the child's brain to learn to read and it helps the slow learning child to

get a head start. Our son at almost 12 is non-verbal yet he can read. I don't

know how we would have taught him to read the conventional way had we waited

till he was 6 or 7! The Doman method is for kids up to 6 years old.