intro

March 26, 2004

Hi .

You and your family are angels to Raja, I am sure.

While you are waiting for the evaluations, I'd get started with lots

of fun oral play. Whistles, drinking thicker liquid through straws,

harmonicas, blowing bubbles, etc. Get those little facial muscles

working! Or at least see what is working. It could be a great way

to have fun and access Raja's skills.

Doing your own programs at home would be great! I had our OT come

to our home for about the first 6 months until she moved her clinic

to our town permanently. My husband built a platform swing, ramp

and other OT/PT equipment. Believe me, he is NOT a carpenter... it

wasn't that tough nor that expensive!

Welcome to the group. We look forward to peeking in to your lives

and offering our advice and experience!!!!

Pam

mom to Noah (7), Olivia (5) and Ian (3, probable Apraxia and motor

planning disorder)

> Hello! I am new to the list, have been lurking for a few weeks

and have

> been overwhelmed by the wealth of information here! My name is

.

> My husband and I have been married for almost 10 years, we have 3

healthy

> children that we were blessed with through birth (ages 6.5, 5,

3.5), and

> have just recently returned home from India with blessing #4. His

name

> is Raja, he is 4.5, and has special needs. We've only been home

with him

> for 6 weeks, and it was suggested to us that we wait to get him

tested

> until he has had more experience with the language. We are hoping

to get

> him tested within the next few weeks. He is already understanding

some

> English, but we are just not getting him to even attempt individual

> sounds. He was said at 3.5 years to put 2 words together, but

> unfortunately he endured a move in India before he came home to

us, and

> he regressed quite a bit over this 6 months time.

>

> In India he was diagnosed as being MR. We suspect that it is a

> misdiagnosis, and we see lots of potential in him, but it is still

early

> to tell. He suffered from meningitis with septicemia as an infant

and

> had neurological damage from that. I don't think it was ever

diagnosed

> by I wouldn't be surprised if he has very mild CP, he has a

history of

> seizures, but has been seizure free for 2 years, so we are weaning

him

> off of his meds, and he has overall developmental delays. I found

this

> list when I was doing some online research on speech disorders.

As I

> said he has not been tested yet, but I am wondering if he may

possibly

> have oral and verbal apraxia. The symptoms all seem to fit, and

he was

> quite delayed in speech in his primary language.

>

> I have been very curious about the fish oil supps that have been

talked

> about. I ordered the Late Talker book and am dying for it to

come!

> Hopefully I'll learn much more about them from this resource that

I've

> heard rave reviews about!! )

>

> I also had one question. I am a homeschooler, and while I have

heard

> over and over again the importance of outside ST, PT, OT, etc., I

am also

> wondering how much can effectively be done at home. We plan to

start

> Raja in therapies hopefully within the next month, now that he is

getting

> settled and adjusted. I have found the resources that are

available

> through Linguisystems. Does anyone have any experience with using

any of

> these at home? Is there anywhere that these would be available

used? I

> am most interested in hearing about the Easy Does It for

> Apraxia-Preschool, Let's Get Ready: A Developmental Motor Skills

Program

> for Speech and OT, Oral-Motor Activities for Young Children, and

the

> Autism & PDD: Basic Questions. I'd appreciate any input from

anyone!

>

> Sorry this has gotten so long! Thanks to all of you who have

shared your

> stories, accomplishments and struggles with the list. I feel I've

> learned so much already! Blessings...................

>

> ________________________________________________________________

> The best thing to hit the Internet in years - Juno SpeedBand!

> Surf the Web up to FIVE TIMES FASTER!

> Only $14.95/ month - visit www.juno.com to sign up today!

March 28, 2004

Welcome, -

Sounds like you're doing great so far with Raja! I think the suggestion to

wait a bit and let him acclimate to the language, etc. is a good one. Perhaps

some of the others on this line who have adopted from out of the country can add

more to that thought. I don't know how helpful this might be but you might want

to see if you can find the Kaufman Kit - it's a treatment system for kids with

language disorders including apraxia. The picture cards might be useful in

helping Raja learn the language as well as for treatment.

Sherry

SQ@... wrote:

Hello! I am new to the list, have been lurking for a few weeks and have

been overwhelmed by the wealth of information here! My name is .

My husband and I have been married for almost 10 years, we have 3 healthy

children that we were blessed with through birth (ages 6.5, 5, 3.5), and

have just recently returned home from India with blessing #4. His name

is Raja, he is 4.5, and has special needs. We've only been home with him

for 6 weeks, and it was suggested to us that we wait to get him tested

until he has had more experience with the language. We are hoping to get

him tested within the next few weeks. He is already understanding some

English, but we are just not getting him to even attempt individual

sounds. He was said at 3.5 years to put 2 words together, but

unfortunately he endured a move in India before he came home to us, and

he regressed quite a bit over this 6 months time.

In India he was diagnosed as being MR. We suspect that it is a

misdiagnosis, and we see lots of potential in him, but it is still early

to tell. He suffered from meningitis with septicemia as an infant and

had neurological damage from that. I don't think it was ever diagnosed

by I wouldn't be surprised if he has very mild CP, he has a history of

seizures, but has been seizure free for 2 years, so we are weaning him

off of his meds, and he has overall developmental delays. I found this

list when I was doing some online research on speech disorders. As I

said he has not been tested yet, but I am wondering if he may possibly

have oral and verbal apraxia. The symptoms all seem to fit, and he was

quite delayed in speech in his primary language.

I have been very curious about the fish oil supps that have been talked

about. I ordered the Late Talker book and am dying for it to come!

Hopefully I'll learn much more about them from this resource that I've

heard rave reviews about!! )

I also had one question. I am a homeschooler, and while I have heard

over and over again the importance of outside ST, PT, OT, etc., I am also

wondering how much can effectively be done at home. We plan to start

Raja in therapies hopefully within the next month, now that he is getting

settled and adjusted. I have found the resources that are available

through Linguisystems. Does anyone have any experience with using any of

these at home? Is there anywhere that these would be available used? I

am most interested in hearing about the Easy Does It for

Apraxia-Preschool, Let's Get Ready: A Developmental Motor Skills Program

for Speech and OT, Oral-Motor Activities for Young Children, and the

Autism & PDD: Basic Questions. I'd appreciate any input from anyone!

Sorry this has gotten so long! Thanks to all of you who have shared your

stories, accomplishments and struggles with the list. I feel I've

learned so much already! Blessings...................

________________________________________________________________

The best thing to hit the Internet in years - Juno SpeedBand!

Surf the Web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

March 28, 2004

> My daughter had lead exposure when she was under two. It was 7, so

> they said they wouldn't do any treatment. I saw the treatment was

IV,

> and since they weren't worried about it, I didn't want to subject

her

> to IV treatments. But it always bothered me. Then I read

something

> about oral EDTA and got some for her and started her on that about

six

> months ago. It's hard to be consistent, though, because you have to

> give it to her 3-4 hours after a meal and an hour before another

meal.

> So I usually do it in the morning when she wakes up, and make her

> wait an hour for breakfast.

all chelation agents need to be given often enough to keep

a fairly steady blood level. This includes EDTA. I think

for EDTA it is every 8 hours, but I am not confident about

this time-- I just have not read it and written it often

enough to trust my memory on this.

>

> Anyway, I am on a couple of other lists, and someone posted about

Andy

> Cutler's book. So I went to the link because I'm interested in

> getting my fillings out, and my mom is having some immune problems

> that she can't get diagnosed, and I'm trying to convince her to get

> out her fillings. So I was hoping that would have something that I

> could send her to convince her.

>

> By reading the excerpts, I see that he says that EDTA doesn't do

the

> job on mercury poisoning.

right. Not very good for mercury. But okay for lead.

> Have I done more damage to her than good

> by using the EDTA?

I don't know. Let's hope not

> If I now start the DMSA, will that be okay?

yes, assuming of course that she is not currently being

exposed to lead,

> Is it

> easy to give to the kids?

you need to give it every 4 hours INCLUDING AT NIGHT.

That is generally the hard part. Although getting the

stuff down is hard with some kids. Can be very hard

or very easy.

> My daughter is only four and cannot yet

> take pills. I saw they came in pills. Do you take them out of the

> pills?

it depends.

Often the answer if " yes " but it depends.

I will try to make sense here.

First of all, the amount your little one will need to take is

probably a tiny amount--- like 10 or 20 or 25 mg.

You can look here for dosing information, if you want:

http://home.earthlink.net/~moriam/Andy_dose_sched.html

Then, the second thing is where you are buying the DMSA from.

If you have a prescription, you have more choices than if

you do not have a prescription.

http://home.earthlink.net/~moriam/HOW_TO_buy_DMSA.html

You can read all about it. Basically, if you have a

prescription AND are willing to pay more, then you can

get the DMSA in smaller amounts (such as from Kirkman's

or from a compounding pharmacy). If you want the cheaper

route and/or if you don't have a prescription, then you

will be buying 100 mg capsules. These need to be divided up.

Now, as for how to divide them up and hide the dose in

food or drink, you will find lots of tips and ideas here

also:

http://home.earthlink.net/~moriam/HOW_TO_buy_DMSA.html

That is the same URL. Just scroll down toward the end

of the file, and there are sections about getting kids

to take stuff.

good wishes,

Moria

March 29, 2004

I just wanted to thank everyone for the welcome, tips and advice! We

have many friends who are from India. They saw Raja when he first got

home, then again yesterday. Well, he just put on a show for them. He

repeated sounds for us, did EVERYTHING we asked him to. We just told him

simple commands, give me such and such, put up your arms, give me five,

etc. They were blown away by how much improvement they can see in him

already!

We have started teaching him signs and he has learned about 12-15

already. When he first started using them it was so fun to see how

excited he was to use them to be able to communicate to us. We have

noticed that he is also starting to put more effort into trying to repeat

sounds after us. Even if he can't do a certain sound, he will say

something!

Thanks again for the welcome! I am so excited that I found this list.

Even though I don't really know what Raja's full abilities (or

disabilities) are, it helps to know that he is not the only child at 4.5

years old that struggles with talking! Thanks for sharing your stories

and successes!!! Blessings to you and your precious children! ~

________________________________________________________________

The best thing to hit the Internet in years - Juno SpeedBand!

Surf the Web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

August 30, 2004

Dear Suzanne

Apraxia is a very frustrating problem for the parents and the child. But I think

you are really lucky that the child has been diagnosed at 2 years of age. With

the right therapy and perseverance, you will find improvement, but slowly. Just

hang in there. You have come to the right place, to this wonderful group!

Regards

Vani

Suzanne Balvanz <balvanzfamily@...> wrote:

Hi:

My name is Suzanne, I live right outside the DC area. Just moved

here from ALASKA. I am a military wife. My husband and I have three

special needs kiddos (16, 4 and 2) The 16 yo and the 4 yo both have

fragile x syndrome of opposites degrees (, 16 is moderately

mentally retarded and autistic, whereas our daughter, Micaela 4, has

only speech delays, social anxiety and SI issues, but no cognitive

impairment...)

But our baby, Adam who is 2, has severe verbal apraxia. I am finding

it MUCH more challenging than even a child who is MR/autistic...My

beautiful bright boy just doesn't say much. We had him tested in

utero so we know he doesn't have the FX gene, but to be told

he's " normal/typical " then have to deal with verbal apraxia, is just

too much to bear sometimes.

Like I said, just moved here, have to get a referral in town for a

SLP for who is good with apraxic kidlets...Anyone know of an SLP? I

live in Herndon and don't mind driving too far...

I will be asing lots of questions in the coming weeks. I found you

guys and I don't feel so alone now...

Suzanne in NoVa

June 28, 2005

You may want to utilize the book Asperger's What Does it Mean to Me? by

Faherty.

June 28, 2005

I used this book with my son Lucas (age 11) We actually did many of

the chapters together. I found it very interesting and it did help

Lucas understand a little bit more about everything going on. I

really like the list of ideas for school included in the chapters.

Pam Denzler

> You may want to utilize the book Asperger's What Does it Mean to

Me? by

> Faherty.

>

June 28, 2005

Ana,

My son has always been privy to our conversations with specialists. He

knows he has AS, bipolar disorder, ADHD and mild cerebral palsy. He knows

he is adopted and has known this forever. He does the fundamentals of his

birth mother's story. I don't keep any secrets from him.

There are people in my family who don't approve of my openness, but this is

the only way I can be. My son seems okay with the knowledge and has his

books on AS and BP that he reads to himself to help him explain his

conditions to other people.

My son's disabilities are quite obvious. No one would say he is

neurotypical. And I can never be sure what someone will say to him. So

perhaps our situation is a bit different from yours.

But I did want to reassure you that the knowledge hasn't appeared to have

affected our son in a negative way.

T.

mom of Sasha, nearly 8

At 07:45 AM 6/28/2005 +0000, you wrote:

>Hi,

>I am the mother of two wonderful kids. , 9 and k, 5.

>My son was diagnosed AS when he was 5. He had an IEP at school

>and he managed to have straight A's. He is very smart and reads A LOT!!

>Towards the end of the year, his behavior started to change. He was

>very frustrated, anxious and he stopped emotional communication with

>me. I received a couple of calls from his teacher because he was not

>defending himself at all when he was being accused of something. I

>ended up quitting my job to dedicate more time to him. Now that I'm at

>home he is showing some emotions(mostly anger and love) but still he's

>not able to talk about them. I've been trying to help him with social

>clues and talking, sometimes he cooperates, but most of the time, he

>does not. I'm wondering if it is a good idea to explain to him why he

>is different, and why I insist that he changes some habits that are

>not socially acceptable. He has a very high IQ, he reads and

>understands information above high school level. Should I tell him now?

>I'll appreciate your answers,

>

>Ana Cruz

>

September 18, 2005

Hi JoAnn welcome well i know what you mean i have been in pain

sence i was 15 and the only time i have releif is when i was pregnant

with my two kids i loved that time but i hated right after i had my

daughter because i could not walk hardly good luck with the rummy and

i have no idea about what you can take for the pain that would be fine

while you are nursing.

melissa

September 18, 2005

Welcome JoAnn,

I am so glad your here, but sorry how you feel. Your family has had

it's share of RA. I hope you can get to the rheumy soon, I know it's

hard living with pain. Hugs, Tawny

> Hi, I'm JoAnn, and I just joined this list. I am experiencing what I

> think must be RA, or something related. I have had aches/pains for

> over a decade, but tests have never shown anything conclusive.

> However, I have a strong family history of RA, among other problems,

> and I'm going in for more tests soon. My dad has had RA for about

40+

> years now, and has had most of his joints replaced, his ankles are

> fused, you name it. He now suffers from severe sciatica, and is

> more disabled than he ever was, darn it. He's 77 years old, and I

> admire him so much for staying active for SO long, despite his pain

> (which he's had all MY life, since I'll be 40 in November).

>

> My sister is now going on disability w/her RA; she's 48 and

suffering

> terribly. She is on methotrexate and prednisone, I think. Dad has

been

> on everything over the years, and is currently on methotrexate and

> Enbrel.

>

> My concerns are, of course, that the tests will show nothing, as

> usual. I am having horrible stiffness/pain in my right shoulder,

down

> my arm, elbow, into my wrists on both sides....Ankles, knees, hips

> hurt, too. No real swelling, although I have hot joints. But the

worst

> thing right now, other than pain, is that I'm exhausted and

weak.

> I " look " fine, so no one gets it. My husband is sympathetic, and

> believes me when I'm struggling w/the weakness.

>

> I am also the mother of six children, ages 22 months through 15

years.

> Only my oldest is in school; the others homeschool. That's going

okay,

> despite my pains. It actually helps for me NOT to have to run all

over

> from one school to another, if you know what I mean. I've had them

in

> school before, and I found that more difficult to manage. We also

have

> special needs; I have a couple of kids on the autistic spectrum, as

> well as dealing with sensory integration disorder and speech delay

> w/my youngest....Whew. He recently qualified for OT and speech

therapy

> in our home, thank GOD. That will help (less running around to

> appointments).

>

> Anyway, I joined this list hoping to learn more from you, and to

learn

> how to give myself what I need. I am used to putting myself last,

and

> I see now that I cannot do that! I won't be of any use to my kids

if I

> can't manage this more effectively.

>

> I am not taking anything at this point, but I hope to get in to the

> rheumatologist this week for tests. I can't take Motrin at all; it

> wrecks my stomach. I thought I had Crohn's disease last year after

> taking Motrin (after I tore 3 ligaments in my right ankle, missing

the

> last couple of steps while carrying down a full laundry basket,

ouch).

> I am still suffering from whatever happened to my stomach/colon at

> that point, but the stomach pains are gone. (My mom died from

> complications of Crohn's disease 9 years ago, when she was just 59

> years old.) I don't know if Tylenol would help w/the pain. I am

still

> nursing my youngest, and don't think he'll wean for at least 6

months.

> I know there must be some drugs compatible w/nursing; anyone know

what

> might be a possibility?

>

> Thanks for being here!

> JoAnn

September 19, 2005

Hi Joann

Welcome to the group. I am new here too.

I hope you get some positive results when you go to see your rheumy and he will

be able to help you with your pain.

Joyce

tdianaok <tdianaok@...> wrote:

Welcome JoAnn,

I am so glad your here, but sorry how you feel. Your family has had

it's share of RA. I hope you can get to the rheumy soon, I know it's

hard living with pain. Hugs, Tawny

> Hi, I'm JoAnn, and I just joined this list. I am experiencing what I

> think must be RA, or something related. I have had aches/pains for

> over a decade, but tests have never shown anything conclusive.

> However, I have a strong family history of RA, among other problems,

> and I'm going in for more tests soon. My dad has had RA for about

40+

> years now, and has had most of his joints replaced, his ankles are

> fused, you name it. He now suffers from severe sciatica, and is

> more disabled than he ever was, darn it. He's 77 years old, and I

> admire him so much for staying active for SO long, despite his pain

> (which he's had all MY life, since I'll be 40 in November).

>

> My sister is now going on disability w/her RA; she's 48 and

suffering

> terribly. She is on methotrexate and prednisone, I think. Dad has

been

> on everything over the years, and is currently on methotrexate and

> Enbrel.

>

> My concerns are, of course, that the tests will show nothing, as

> usual. I am having horrible stiffness/pain in my right shoulder,

down

> my arm, elbow, into my wrists on both sides....Ankles, knees, hips

> hurt, too. No real swelling, although I have hot joints. But the

worst

> thing right now, other than pain, is that I'm exhausted and

weak.

> I " look " fine, so no one gets it. My husband is sympathetic, and

> believes me when I'm struggling w/the weakness.

>

> I am also the mother of six children, ages 22 months through 15

years.

> Only my oldest is in school; the others homeschool. That's going

okay,

> despite my pains. It actually helps for me NOT to have to run all

over

> from one school to another, if you know what I mean. I've had them

in

> school before, and I found that more difficult to manage. We also

have

> special needs; I have a couple of kids on the autistic spectrum, as

> well as dealing with sensory integration disorder and speech delay

> w/my youngest....Whew. He recently qualified for OT and speech

therapy

> in our home, thank GOD. That will help (less running around to

> appointments).

>

> Anyway, I joined this list hoping to learn more from you, and to

learn

> how to give myself what I need. I am used to putting myself last,

and

> I see now that I cannot do that! I won't be of any use to my kids

if I

> can't manage this more effectively.

>

> I am not taking anything at this point, but I hope to get in to the

> rheumatologist this week for tests. I can't take Motrin at all; it

> wrecks my stomach. I thought I had Crohn's disease last year after

> taking Motrin (after I tore 3 ligaments in my right ankle, missing

the

> last couple of steps while carrying down a full laundry basket,

ouch).

> I am still suffering from whatever happened to my stomach/colon at

> that point, but the stomach pains are gone. (My mom died from

> complications of Crohn's disease 9 years ago, when she was just 59

> years old.) I don't know if Tylenol would help w/the pain. I am

still

> nursing my youngest, and don't think he'll wean for at least 6

months.

> I know there must be some drugs compatible w/nursing; anyone know

what

> might be a possibility?

>

> Thanks for being here!

> JoAnn

September 21, 2005

JoAnn,

Welcome to the group. I know you will learn a lot from

everyone here. They are really great. I hope you feel

better soon.

Beth(AR)

--- JoAnn <mamalac@...> wrote:

> Hi, I'm JoAnn, and I just joined this list. I am

> experiencing what I

> think must be RA, or something related. I have had

> aches/pains for

> over a decade, but tests have never shown anything

> conclusive.

> However, I have a strong family history of RA, among

> other problems,

> and I'm going in for more tests soon. My dad has had

> RA for about 40+

> years now, and has had most of his joints replaced,

> his ankles are

> fused, you name it. He now suffers from severe

> sciatica, and is

> more disabled than he ever was, darn it. He's 77

> years old, and I

> admire him so much for staying active for SO long,

> despite his pain

> (which he's had all MY life, since I'll be 40 in

> November).

>

> My sister is now going on disability w/her RA; she's

> 48 and suffering

> terribly. She is on methotrexate and prednisone, I

> think. Dad has been

> on everything over the years, and is currently on

> methotrexate and

> Enbrel.

>

> My concerns are, of course, that the tests will show

> nothing, as

> usual. I am having horrible stiffness/pain in my

> right shoulder, down

> my arm, elbow, into my wrists on both

> sides....Ankles, knees, hips

> hurt, too. No real swelling, although I have hot

> joints. But the worst

> thing right now, other than pain, is that I'm

> exhausted and weak.

> I " look " fine, so no one gets it. My husband is

> sympathetic, and

> believes me when I'm struggling w/the weakness.

>

> I am also the mother of six children, ages 22 months

> through 15 years.

> Only my oldest is in school; the others homeschool.

> That's going okay,

> despite my pains. It actually helps for me NOT to

> have to run all over

> from one school to another, if you know what I mean.

> I've had them in

> school before, and I found that more difficult to

> manage. We also have

> special needs; I have a couple of kids on the

> autistic spectrum, as

> well as dealing with sensory integration disorder

> and speech delay

> w/my youngest....Whew. He recently qualified for OT

> and speech therapy

> in our home, thank GOD. That will help (less running

> around to

> appointments).

>

> Anyway, I joined this list hoping to learn more from

> you, and to learn

> how to give myself what I need. I am used to putting

> myself last, and

> I see now that I cannot do that! I won't be of any

> use to my kids if I

> can't manage this more effectively.

>

> I am not taking anything at this point, but I hope

> to get in to the

> rheumatologist this week for tests. I can't take

> Motrin at all; it

> wrecks my stomach. I thought I had Crohn's disease

> last year after

> taking Motrin (after I tore 3 ligaments in my right

> ankle, missing the

> last couple of steps while carrying down a full

> laundry basket, ouch).

> I am still suffering from whatever happened to my

> stomach/colon at

> that point, but the stomach pains are gone. (My mom

> died from

> complications of Crohn's disease 9 years ago, when

> she was just 59

> years old.) I don't know if Tylenol would help w/the

> pain. I am still

> nursing my youngest, and don't think he'll wean for

> at least 6 months.

> I know there must be some drugs compatible

> w/nursing; anyone know what

> might be a possibility?

>

> Thanks for being here!

> JoAnn

>

__________________________________________________

October 8, 2005

Welcome . You live close to me. I live in Robbinsville. I'm

glad to hear that you are doing fine with the band and therapy. I

have a 9 month old daughter who had mild plagio and tort and we were

able to keep her out of the band with repositioning. Were do you go

for PT. We just were discharged from Childrens Specialized Hosp. the

beginning of Sept. We also did cranial sacral therapy weekly and now

only do monthly with a great woman in East Windsor. Did your

pediatrician pick up the plagio? Who is your pediatrician.

Unfortunatly, ours did not but did give us a script for the band if

that whats we decided. You can check out my baby under Brielle B

under the photos. Good luck to you. This group is a wonderful

support system. Debbie and Brielle (9mos repositioned) NJ

>

> Hi,

>

> My name is and I'm from Princeton, NJ. We just got our 7.5

mo ds

> banded a week ago. He had severe plagiocephaly (they measured his

> assymetry as being 24 mm!!! He hated the measurements and was

> squirming the whole time, so I think that the measurement was

> exaggerated, but it is pretty extreme!) as well as torticollis, for

> which we started treatment with a physical therapist almost a month

> ago. The plagio is most extreme in his forehead which juts out and

in

> one ear being about an inch behind the other (though I think the

ear

> assymetry will be worked out through the physical therapy).

>

> Besides the drive, I'm pretty happy with the treatment. My son

doesn't

> seem to even notice the band. I do have to take it off every hour

to

> wipe off his head and the band because he sweats so much (he got a

> really bad heat rash the second day) but now that I only put him in

a

> diaper at night, he seems to be doing better. The people at CT

were

> really helpful with the rash and have been super flexible.

>

> Princeton, NJ

>

October 8, 2005

Hi ,

Welcome to the group! It's great to hear that your son has adjusted

so well. Keep us posted on his progress.

>

> Hi,

>

> My name is and I'm from Princeton, NJ. We just got our 7.5

mo ds

> banded a week ago. He had severe plagiocephaly (they measured his

> assymetry as being 24 mm!!! He hated the measurements and was

> squirming the whole time, so I think that the measurement was

> exaggerated, but it is pretty extreme!) as well as torticollis, for

> which we started treatment with a physical therapist almost a month

> ago. The plagio is most extreme in his forehead which juts out and

in

> one ear being about an inch behind the other (though I think the

ear

> assymetry will be worked out through the physical therapy).

>

> Besides the drive, I'm pretty happy with the treatment. My son

doesn't

> seem to even notice the band. I do have to take it off every hour

to

> wipe off his head and the band because he sweats so much (he got a

> really bad heat rash the second day) but now that I only put him in

a

> diaper at night, he seems to be doing better. The people at CT

were

> really helpful with the rash and have been super flexible.

>

> Princeton, NJ

>

October 8, 2005

Hi ,

Welcome to the group! Glad to hear that treatment is going well for

your son. We'd love to see photos of your cutie sometime!

Natasha

Atlanta, GA

>

> Hi,

>

> My name is and I'm from Princeton, NJ. We just got our 7.5

mo ds

> banded a week ago. He had severe plagiocephaly (they measured his

> assymetry as being 24 mm!!! He hated the measurements and was

> squirming the whole time, so I think that the measurement was

> exaggerated, but it is pretty extreme!) as well as torticollis,

for

> which we started treatment with a physical therapist almost a

month

> ago. The plagio is most extreme in his forehead which juts out

and in

> one ear being about an inch behind the other (though I think the

ear

> assymetry will be worked out through the physical therapy).

>

> Besides the drive, I'm pretty happy with the treatment. My son

doesn't

> seem to even notice the band. I do have to take it off every hour

to

> wipe off his head and the band because he sweats so much (he got a

> really bad heat rash the second day) but now that I only put him

in a

> diaper at night, he seems to be doing better. The people at CT

were

> really helpful with the rash and have been super flexible.

>

> Princeton, NJ

>

October 8, 2005

Welcome ,

Your son's case sounds similar to my Dominicks'. I am glad you are

using CT they have worked miracles for me. We banded Dominick at

5months and he just graduated band #3 on Sept. 27th with the most

amazing results. You can look at his website

www.mybandedbaby.typepad.com to read about his plagio and the muscle

imbalance the plagio caused and his treatment with the Doc and PT and

others. I have all his progress pictures during treatment in there so

you can see what wonderful changes to expect.Feel free to email me

anytime after reading his website. You may also want to look at the

website of Hannah('s DD) www.hannahsnoggin.typepad.com , we joke

that her and Dominick are plagio twins. Again Good Luck and keep us

posted.

CAROLG

>

> Hi,

>

> My name is and I'm from Princeton, NJ. We just got our 7.5

mo ds

> banded a week ago. He had severe plagiocephaly (they measured his

> assymetry as being 24 mm!!! He hated the measurements and was

> squirming the whole time, so I think that the measurement was

> exaggerated, but it is pretty extreme!) as well as torticollis, for

> which we started treatment with a physical therapist almost a month

> ago. The plagio is most extreme in his forehead which juts out and

in

> one ear being about an inch behind the other (though I think the

ear

> assymetry will be worked out through the physical therapy).

>

> Besides the drive, I'm pretty happy with the treatment. My son

doesn't

> seem to even notice the band. I do have to take it off every hour

to

> wipe off his head and the band because he sweats so much (he got a

> really bad heat rash the second day) but now that I only put him in

a

> diaper at night, he seems to be doing better. The people at CT

were

> really helpful with the rash and have been super flexible.

>

> Princeton, NJ

>

October 8, 2005

Welcome ,

Your son's case sounds similar to my Dominicks'. I am glad you are

using CT they have worked miracles for me. We banded Dominick at

5months and he just graduated band #3 on Sept. 27th with the most

amazing results. You can look at his website

www.mybandedbaby.typepad.com to read about his plagio and the muscle

imbalance the plagio caused and his treatment with the Doc and PT and

others. I have all his progress pictures during treatment in there so

you can see what wonderful changes to expect.Feel free to email me

anytime after reading his website. You may also want to look at the

website of Hannah('s DD) www.hannahsnoggin.typepad.com , we joke

that her and Dominick are plagio twins. Again Good Luck and keep us

posted.

CAROLG

>

> Hi,

>

> My name is and I'm from Princeton, NJ. We just got our 7.5

mo ds

> banded a week ago. He had severe plagiocephaly (they measured his

> assymetry as being 24 mm!!! He hated the measurements and was

> squirming the whole time, so I think that the measurement was

> exaggerated, but it is pretty extreme!) as well as torticollis, for

> which we started treatment with a physical therapist almost a month

> ago. The plagio is most extreme in his forehead which juts out and

in

> one ear being about an inch behind the other (though I think the

ear

> assymetry will be worked out through the physical therapy).

>

> Besides the drive, I'm pretty happy with the treatment. My son

doesn't

> seem to even notice the band. I do have to take it off every hour

to

> wipe off his head and the band because he sweats so much (he got a

> really bad heat rash the second day) but now that I only put him in

a

> diaper at night, he seems to be doing better. The people at CT

were

> really helpful with the rash and have been super flexible.

>

> Princeton, NJ

>

October 9, 2005

,

Welcome to the group! It sounds as if your son's first week in the

band has gone very well - that's fantastic. Even if the

measurements were off somewhat, I think that is definitely in the

severe range - I'm so happy you all were made aware of the banding

option in a timely manner to be able to avail yourselves of it!

Would you let us know how your son's first follow-up appt. goes?

Take care,

Christie (Mom to Repo'd Remy)

>

> Hi,

>

> My name is and I'm from Princeton, NJ. We just got our 7.5

mo ds

> banded a week ago. He had severe plagiocephaly (they measured his

> assymetry as being 24 mm!!! He hated the measurements and was

> squirming the whole time, so I think that the measurement was

> exaggerated, but it is pretty extreme!) as well as torticollis,

for

> which we started treatment with a physical therapist almost a

month

> ago. The plagio is most extreme in his forehead which juts out

and in

> one ear being about an inch behind the other (though I think the

ear

> assymetry will be worked out through the physical therapy).

>

> Besides the drive, I'm pretty happy with the treatment. My son

doesn't

> seem to even notice the band. I do have to take it off every hour

to

> wipe off his head and the band because he sweats so much (he got a

> really bad heat rash the second day) but now that I only put him

in a

> diaper at night, he seems to be doing better. The people at CT

were

> really helpful with the rash and have been super flexible.

>

> Princeton, NJ

>

October 9, 2005

,

Welcome to the group! It sounds as if your son's first week in the

band has gone very well - that's fantastic. Even if the

measurements were off somewhat, I think that is definitely in the

severe range - I'm so happy you all were made aware of the banding

option in a timely manner to be able to avail yourselves of it!

Would you let us know how your son's first follow-up appt. goes?

Take care,

Christie (Mom to Repo'd Remy)

>

> Hi,

>

> My name is and I'm from Princeton, NJ. We just got our 7.5

mo ds

> banded a week ago. He had severe plagiocephaly (they measured his

> assymetry as being 24 mm!!! He hated the measurements and was

> squirming the whole time, so I think that the measurement was

> exaggerated, but it is pretty extreme!) as well as torticollis,

for

> which we started treatment with a physical therapist almost a

month

> ago. The plagio is most extreme in his forehead which juts out

and in

> one ear being about an inch behind the other (though I think the

ear

> assymetry will be worked out through the physical therapy).

>

> Besides the drive, I'm pretty happy with the treatment. My son

doesn't

> seem to even notice the band. I do have to take it off every hour

to

> wipe off his head and the band because he sweats so much (he got a

> really bad heat rash the second day) but now that I only put him

in a

> diaper at night, he seems to be doing better. The people at CT

were

> really helpful with the rash and have been super flexible.

>

> Princeton, NJ

>

November 1, 2005

The best thing for your son is a healthy mother. You have to take care of

yourself first, just to be able to have the resources to care for your child. It

can be draining in so many ways. I just started on this journey in May, with our

son , who just turned 3 in July. We are lucky to have caught it early,

and have also faced struggles with Dr's and schools, so you are fortunate to

have a food experience with your school. It is a shame that all children can't

be 'discovered' at birth. It would save us mothers a lot of guilt, and misery,

misunderstanding our children, looking for 'WHY' when they show behaviors.

I would highly recommend the book " Asperger Syndrome and Difficult Moments " by

Myles. It has a paragraph in it that goes something like this...

A study was done on two groups of kids, one group with Aspergers, one group who

was neurotypical. It was discovered that when put under stress, the child with

Aspergers has a difference in their brain at that point. The brain tries to

solve the problem, but instead of going to the 'thinking center' of the brain

for the solution, somehow the brain activates the 'emotional center' of the

brain! (Imagine trying to deal with stress when in a fog of hormones during PMS

week!) This puts the child in a unique situation, because problem solving with

emotions leads to rages, not solutions. So the child that is at a disadvantage

the second that stress interferes with life problems......so transitions,

changes in routine, or someone forgetting to give them ketchup at lunch isn't a

problem that is addressed logically, but emotionally...which can lead to rages,

meltdowns, and aggression...simply because the stress creates a frustration

level from the wrong part of the brain dealing with a situation.

..........................that is my paraphrasing there, and my examples, but

that is the general idea of what they said. It was like someone lit a thousand

lightbulbs in my head when I read that. So I really think that the book is a

great resource for new parents trying to understand Aspergers, and how it makes

their children different than neurotypical kids.

Well, I hope that helps a little. I don't know what else to say except hang in

there, don't feel guilty for taking care of you, because that is what keeps your

son balanced. If you are a mess, he will be too. (atleast that is my experience

with ) Well, is hollering for breakfast, so I gotta go!

Laramy

( ) Intro

Hi everyone, my name is Christie and my 8 yr old son was diagnosed

with Aspergers early last week. I've always noticed a difference and

he never ceases to amaze me with his intelligence. His school has been

wonderful and more than willing to cooperate to his needs. For the

past 2 years I thought my son was just rebellious and started fights

with other children for no reason. My mind has finally been put to

ease with my new understanding of his social disorder as well. I've

been researching as much information as I possibly can, and from what

I've read so far we have a long road to travel. My biggest fears are

of my son never being socially accepted, labeled the " bad kid " and not

being able to lead a normal life. I recently went through a horrible

divorce nearly a year ago and this affected my son in the most

negative way. He is finally coming around but he still seems to have

more bad days with outbursts than good. I feel guilty for looking for

support for myself! This isn't about me, but my son, yet at times I

feel stressed and I find myself in siuations not knowing exactly how

to handle matters in the best way. I'm interested in hearing success

stories, knowing more of what to expect in the months, years to come,

and finding a place I can speak and find both support and answers. I

look forward to getting to know more of you, and hearing your words of

advice, and support.

Good Night,

Christie

Ar.

November 2, 2005

In a message dated 11/2/2005 6:41:08 AM Eastern Standard Time,

beachbodytan2002@... writes:

Dear Laramy,

Hello, Its Rose, I just read " study on two kid groups " . I took notes,

because, when I bring up certain things about my son, to the school, (teachers,

CSE, special ed) and they say, but I see neurotypical children do the same.

I'll now have a great answer on why they still have to " teach " my son

differently or one on one with some challenges he faces!!!! your awesome!!!

That is a pet peeve of mine - to say, " But everyone has that problem! " or

" All middle school kids act that way! " or " All boys are immature... " or even,

" <insert chuckle> Gosh I have that problem! "

THe reason lots of typical kids have the same problems is because kids with

autism/AS ARE KIDS TOO! surprise surprise. The difference is neurological

and, as in the example given here, they don't learn the same way. While other

kids will learn by example or by being told, our kids do not generalize

skills well. Even if a kid with AS can tell you the correct answer, it doesn't

mean they know it or will use it if in that situation. So these kinds of

statements are just ignorance about AS and an example of people trying to blow

off your real concerns.

Roxanna ô¿ö

Autism Happens

November 2, 2005

Dear Laramy,

Hello, Its Rose, I just read " study on two kid groups " . I took notes, because,

when I bring up certain things about my son, to the school, (teachers, CSE,

special ed) and they say, but I see neurotypical children do the same. I'll now

have a great answer on why they still have to " teach " my son differently or one

on one with some challenges he faces!!!! your awesome!!!

Matt & Laramy <mattlaramy@...> wrote: