New to Group

[Guest guest]

Hi, Ma. I'm new to the group, too. I don't have any experience in

what your're talking about, but I wanted to write and say welcome to

the group, and glad you are here. It's very quiet here today, but

hopefully someone with experience will be able to help you.

Betsy in Houston

>

> Hi

> I just joined today and I need some support. After 25 years on my

job

> and a supervisor for 18 of them I am being demoted and moved to

> another dept. mostly because my illness has caused me to be out

of

> work a lot. I kept struggling to keep up but just couldn't always

> pull it off. I have RA and just started treatment with an RA doc

who

> has me on MTX. Two years ago it was iritis that led to cataracts

that

> led to a vitrectomy. My boss, needless to say, thinks I just use

my

> illness as an excuse for not doing my job. I feel so depressed

and

> alone. I live alone and must support myself. Last month I fell

and

> cut my leg so bad I almost removed a 6 inch chunk of the leg. It

was

> repaired and I was on crutches and out of work for 2 and i/2

weeks. I

> guess that was the last straw for the boss. He told me this week

that

> I'm out.

> That's all for now. I'm just at a loss.

> MA

>

[Guest guest]

How do you muscle test a child? Very curious.

[Guest guest]

Sorry for the delayed reply, we have had 50 mph winds and I lost power

during my first attempt and have not had the computer plugged in since.

My DC uses a surrogate, it could be me but I opted for the assistant

because I did not want any of my issues to possibly pop up, although

that is not supposed to happen. The child sits on the lap of the

surrogate, the surrogate puts their arm out to resist the DC and then

the DC tests organs with and without suppliments to see the reaction.

May sound crazy to some of you but my entire family (siblings, parents

etc.) have had many chronic issues cleared up using this technique and

the suppliments provided.

I failed to mention in my previous message that our DC also put my son

on an enzyme to help him better digest wheat and recommended that we

avoid wheat as much as possible - which we do. So the GFCF posts have

really interested me. He has not (currently) had us eliminate dairy -

although we did an allergy clearing on dairy last week. My son loves

Kefir (a Russian yogurt drink) and this is our current medium for

giving him his oils and suppliments and I think the probiatics have

also helped his tummy. We used to have really messy diapers and now

things have " firmed " up.

>

> How do you muscle test a child? Very curious.

>

>

>

[Guest guest]

Hi ,

My son was banded at 4 1/2 months and we are very happy we chose to go ahead and do it. He has severe flatness on the back and left side of his head which we were told by all would NOT correct on it's own or by repo since he is so big and strong and rolls to his tummy in his sleep, etc. Plus, we were also told when you have Brachycephaly (flatness on the back) it is close to impossible to see results from repo since BOTH sides need equal amounts of constant pressure - hence, our decision to band. My son has been in his DOCband now for almost two weeks and we are ALREADY noticing a difference in rounding and symmetry. Since results are so pronounced when you start treatment early, we are excited that we were fortunate enough to catch this early.

My daughter (now almost three) had moderate plagio on one side which we WERE able to correct via repositioning, however we caught it at 2 months and aggressively repositioned her since she would let us! It was corrected by the time she was 4 or 5 months old.

Hope my experiences help you...whatever you choose I hope all works out for you and your child. Let me know if you have any questions!

Very best,

Mommy to Wes (DOCbanded almost 2 weeks, 5 months old)

In a message dated 3/22/2006 6:55:10 A.M. Central Standard Time, rachaeldixon@... writes:

Hi All,I discovered this group just tonight. Isnt it wonderful the web!My husband and I have a 4,1/2 month old boy who presents with moderate plagiocephaly ( back/side). We are just in the process of deciding whether or not to go ahead with the helmut therapy. We've been told by the orthotist that we have perhaps another month before we need to decide for the ideal treatment time. We are hoping that with further repositioning his head shape will improve enough for it to be considered Mild.We are also interested in cranial osteopathy. I would love to get some feedback from people who have been down this road. Thank YouFor more plagio info

[Guest guest]

Hi ,

My son was banded at 4 1/2 months and we are very happy we chose to go ahead and do it. He has severe flatness on the back and left side of his head which we were told by all would NOT correct on it's own or by repo since he is so big and strong and rolls to his tummy in his sleep, etc. Plus, we were also told when you have Brachycephaly (flatness on the back) it is close to impossible to see results from repo since BOTH sides need equal amounts of constant pressure - hence, our decision to band. My son has been in his DOCband now for almost two weeks and we are ALREADY noticing a difference in rounding and symmetry. Since results are so pronounced when you start treatment early, we are excited that we were fortunate enough to catch this early.

My daughter (now almost three) had moderate plagio on one side which we WERE able to correct via repositioning, however we caught it at 2 months and aggressively repositioned her since she would let us! It was corrected by the time she was 4 or 5 months old.

Hope my experiences help you...whatever you choose I hope all works out for you and your child. Let me know if you have any questions!

Very best,

Mommy to Wes (DOCbanded almost 2 weeks, 5 months old)

In a message dated 3/22/2006 6:55:10 A.M. Central Standard Time, rachaeldixon@... writes:

Hi All,I discovered this group just tonight. Isnt it wonderful the web!My husband and I have a 4,1/2 month old boy who presents with moderate plagiocephaly ( back/side). We are just in the process of deciding whether or not to go ahead with the helmut therapy. We've been told by the orthotist that we have perhaps another month before we need to decide for the ideal treatment time. We are hoping that with further repositioning his head shape will improve enough for it to be considered Mild.We are also interested in cranial osteopathy. I would love to get some feedback from people who have been down this road. Thank YouFor more plagio info

[Guest guest]

Hi,

Welcome to the group. I don't know anything about cranial osteopathy,

sorry. I do know the younger you band a baby the better and faster the

correction. Some babies are banded as young as I belive 3 months old.

Good luck making your decision, let us know what you decide.

--- In Plagiocephaly , " monumentsc " <rachaeldixon@...>

wrote:

>

> Hi All,

>

> I discovered this group just tonight. Isnt it wonderful the web!

> My husband and I have a 4,1/2 month old boy who presents with moderate

> plagiocephaly ( back/side). We are just in the process of deciding

whether or

> not to go ahead with the helmut therapy. We've been told by the

orthotist that

> we have perhaps another month before we need to decide for the ideal

> treatment time. We are hoping that with further repositioning his

head shape

> will improve enough for it to be considered Mild.

>

> We are also interested in cranial osteopathy.

>

> I would love to get some feedback from people who have been down this

> road.

>

> Thank You

>

>

[Guest guest]

Hi,

Welcome to the group. I don't know anything about cranial osteopathy,

sorry. I do know the younger you band a baby the better and faster the

correction. Some babies are banded as young as I belive 3 months old.

Good luck making your decision, let us know what you decide.

--- In Plagiocephaly , " monumentsc " <rachaeldixon@...>

wrote:

>

> Hi All,

>

> I discovered this group just tonight. Isnt it wonderful the web!

> My husband and I have a 4,1/2 month old boy who presents with moderate

> plagiocephaly ( back/side). We are just in the process of deciding

whether or

> not to go ahead with the helmut therapy. We've been told by the

orthotist that

> we have perhaps another month before we need to decide for the ideal

> treatment time. We are hoping that with further repositioning his

head shape

> will improve enough for it to be considered Mild.

>

> We are also interested in cranial osteopathy.

>

> I would love to get some feedback from people who have been down this

> road.

>

> Thank You

>

>

[Guest guest]

Hi,

Welcome to the group. I don't know anything about cranial osteopathy,

sorry. I do know the younger you band a baby the better and faster the

correction. Some babies are banded as young as I belive 3 months old.

Good luck making your decision, let us know what you decide.

--- In Plagiocephaly , " monumentsc " <rachaeldixon@...>

wrote:

>

> Hi All,

>

> I discovered this group just tonight. Isnt it wonderful the web!

> My husband and I have a 4,1/2 month old boy who presents with moderate

> plagiocephaly ( back/side). We are just in the process of deciding

whether or

> not to go ahead with the helmut therapy. We've been told by the

orthotist that

> we have perhaps another month before we need to decide for the ideal

> treatment time. We are hoping that with further repositioning his

head shape

> will improve enough for it to be considered Mild.

>

> We are also interested in cranial osteopathy.

>

> I would love to get some feedback from people who have been down this

> road.

>

> Thank You

>

>

[Guest guest]

Hi,

Welcome to the group. I don't know anything about cranial osteopathy,

sorry. I do know the younger you band a baby the better and faster the

correction. Some babies are banded as young as I belive 3 months old.

Good luck making your decision, let us know what you decide.

--- In Plagiocephaly , " monumentsc " <rachaeldixon@...>

wrote:

>

> Hi All,

>

> I discovered this group just tonight. Isnt it wonderful the web!

> My husband and I have a 4,1/2 month old boy who presents with moderate

> plagiocephaly ( back/side). We are just in the process of deciding

whether or

> not to go ahead with the helmut therapy. We've been told by the

orthotist that

> we have perhaps another month before we need to decide for the ideal

> treatment time. We are hoping that with further repositioning his

head shape

> will improve enough for it to be considered Mild.

>

> We are also interested in cranial osteopathy.

>

> I would love to get some feedback from people who have been down this

> road.

>

> Thank You

>

>

[Guest guest]

Sounds like my son a year and half ago! He had eating issuues from birth,

gagging,choking and aspirating. I had him evalulated for feeding first due

the stress of it I hadn't noticed the apraxia symptoms. They came to light

at about 18 to 24 months. I would think that if you are seeing a decline in

his weight you ought to get a second opinion. I have complained about

" picky eating " for a year and just one month ago got someone to evaluate.

He is gaining weight fine but eats about 5 different things. Everyone said

the same thing, picky. The OT sees every two weeks to help with integration

of new foods and rates him with moderate to severe senory integration

disorder. He never talked and still only has 5 words intelligible to me at

3. As for the antisocial bit...I know does not volunteer to play

with others at preschool and certainly didn't at 20 months. Does your son

interact with familiar people? If so, I wonder if the language barrier is

the problem. shys away from other kids but I think it's because he

can't communicate with them. At home is very alive with his 4 brothers and

sisters. Whatever the case, find someone who will listen. We have been in

early intervention since was 14 months and now are transitioning to

the School district. Although no one knew what was wrong at 14 months it

was obvious there was something there and 22 months later we are beginning

to get somewhere. Hang in there, Karin

[Guest guest]

When my son was 30 months old I felt it was time to seek a diagnosis

because he was not talking. My other three children started talking

at 24mos, 18mos, and 16 mos respectively.

I took my son to his pediatrician who referred us to our local

children's hospital (not really a childrens hospital it's just where

women with HMOs are sent to deliver their babies...) The waiting

list was 6-8 months long and they were not taking names (the list is

closed temporarily).

Then I looked on-line at the American Speech Language website and

got the name of a speech therapist. We saw her 4 times before my

hubby's company changed insurance companies (We only have one

choice - either the insurer they choose or none at all. We are

uninsurable since my son was born with birth defects. By law we can

get insurance through an employer.) My son was diagnosed with

apraxia.

When we got the new insurer we saw a different speech language

therapist. My son was diagnosed with dysarthria. We have been denied

coverage and we're appealing.

I called my states Early Intervention program but there is a waiting

list and my son is 34 mos old and you age out at 3. When your child

turns 3 you are to seek help from the elementary school your child

would attend (we're homeschoolers and my son is 3 years below the

age of compulsory education in my state (FL) but that is who you

call.) They won't see my son until he turns 3.

I applied to my local university's speech language program. It has a

2 year waiting list.

Now I am overwhelmed and frustrated. I ahve made an appointment with

a " developmental pediatrician " to get an official diagnosis. My son

was born with Poland's Syndrome. Everyone says it's an act of God by

my HMO won't pay for that!

My son says " mama " , " dada " , and " nana " . Otherwise he grunts and

cries. I know he wants to speak because when we read " Harry Potter

and the Goblet of Fire " for homeschool he says " Ah-ee ah-ah "

for " Harry Potter " .

Since we are fighting our HMO I am doing therapy at home. We use his

Ark XT chew toy and Nuk brush and I do stretches on his cheeks which

have low tone. " The Late Talker " book has ideas on things to do at

home.

Best wishes to you,

Debra

[Guest guest]

Hi Tabitha,

Don't let other people casually brush off the serious concerns that

you have - you know your son better than anyone I bet! It's never

too early to look around for a good speech therapist and

deveolpmental pediatrician and schedule an appointment. Typically

the good ones will have long waiting lists and you can always cancel

in the meantime if your concerns go away. It sounds like your son

definitely has sensory issues and could benefit from an occupational

therapist with training in sensory integration, so if I were you I'd

look around for someone for this too. The sensory regulation

problems could explain the anti-social nature (crowd noise too loud

and upsetting) or there could be something deeper going on. You'll

definitely benefit from getting the evaluation process going sooner

rather than later. Good Luck! You're doing the best thing by

trying to " nip it in the bud " as much as possible!

Kerri

[Guest guest]

Excellent advice - couldn't have said it better. There's NOTHING to

be gained by waiting. NOTHING - but lots to be lost.

>

> Hi Tabitha,

>

> Don't let other people casually brush off the serious concerns

that

> you have - you know your son better than anyone I bet! It's never

> too early to look around for a good speech therapist and

> deveolpmental pediatrician and schedule an appointment. Typically

> the good ones will have long waiting lists and you can always

cancel

> in the meantime if your concerns go away. It sounds like your son

> definitely has sensory issues and could benefit from an

occupational

> therapist with training in sensory integration, so if I were you

I'd

> look around for someone for this too. The sensory regulation

> problems could explain the anti-social nature (crowd noise too

loud

> and upsetting) or there could be something deeper going on.

You'll

> definitely benefit from getting the evaluation process going

sooner

> rather than later. Good Luck! You're doing the best thing by

> trying to " nip it in the bud " as much as possible!

>

> Kerri

>

[Guest guest]

Hi, Debra -

Have you tried the EI programs through Easter Seals (you can go on their

website to find one near you), contacting ish Rite (again, look on their

website), Shriner's Hospital, or other places like that for therapy? When Josh

was 12 months, and not meeting milestones or speaking, we told the doc we wanted

to go to Easter Seals - he signed the order and we had an

evaluation/diagnosis/and started therapy all within one month. Sometimes going

through the EI program in a school district or state provided simply doesn't

work out to anyone's benefit (I hate to say). I don't recall paying anything at

Easter Seals for any of Josh's therapies (he received OT, PT, Speech, and we

added music through another organization) and I know we haven't paid anything

nor has insurance been billed for anything we've ever had done at Shriner's (and

there have been some pretty darn costly tests there!).

Just a suggestion - maybe it will ease your frustration if you contact them

(if you have already, then just ignore this!).

Sherry

debjward <debjward@...> wrote:

When my son was 30 months old I felt it was time to seek a diagnosis

because he was not talking. My other three children started talking

at 24mos, 18mos, and 16 mos respectively.

I took my son to his pediatrician who referred us to our local

children's hospital (not really a childrens hospital it's just where

women with HMOs are sent to deliver their babies...) The waiting

list was 6-8 months long and they were not taking names (the list is

closed temporarily).

Then I looked on-line at the American Speech Language website and

got the name of a speech therapist. We saw her 4 times before my

hubby's company changed insurance companies (We only have one

choice - either the insurer they choose or none at all. We are

uninsurable since my son was born with birth defects. By law we can

get insurance through an employer.) My son was diagnosed with

apraxia.

When we got the new insurer we saw a different speech language

therapist. My son was diagnosed with dysarthria. We have been denied

coverage and we're appealing.

I called my states Early Intervention program but there is a waiting

list and my son is 34 mos old and you age out at 3. When your child

turns 3 you are to seek help from the elementary school your child

would attend (we're homeschoolers and my son is 3 years below the

age of compulsory education in my state (FL) but that is who you

call.) They won't see my son until he turns 3.

I applied to my local university's speech language program. It has a

2 year waiting list.

Now I am overwhelmed and frustrated. I ahve made an appointment with

a " developmental pediatrician " to get an official diagnosis. My son

was born with Poland's Syndrome. Everyone says it's an act of God by

my HMO won't pay for that!

My son says " mama " , " dada " , and " nana " . Otherwise he grunts and

cries. I know he wants to speak because when we read " Harry Potter

and the Goblet of Fire " for homeschool he says " Ah-ee ah-ah "

for " Harry Potter " .

Since we are fighting our HMO I am doing therapy at home. We use his

Ark XT chew toy and Nuk brush and I do stretches on his cheeks which

have low tone. " The Late Talker " book has ideas on things to do at

home.

Best wishes to you,

Debra

[Guest guest]

Kerri,

Thanks for the info. I will look into Dr.'s around here and see what I can

come up with. The problem would be our Dr. will not give a refurral until he is

two. This child has come with alot of medical bills, so at this point I just

don't see a way to do it without the insurance covering it. He was born with

club foot and he is always sick, still getting ear infection after the tubes put

in. So, I will try and maybe look into Early intervention.

Thank you again. I personally have not heard of sensory issues, so off to

search on the net.

Tabitha

Jeff <kerripat@...> wrote:

Hi Tabitha,

Don't let other people casually brush off the serious concerns that

you have - you know your son better than anyone I bet! It's never

too early to look around for a good speech therapist and

deveolpmental pediatrician and schedule an appointment. Typically

the good ones will have long waiting lists and you can always cancel

in the meantime if your concerns go away. It sounds like your son

definitely has sensory issues and could benefit from an occupational

therapist with training in sensory integration, so if I were you I'd

look around for someone for this too. The sensory regulation

problems could explain the anti-social nature (crowd noise too loud

and upsetting) or there could be something deeper going on. You'll

definitely benefit from getting the evaluation process going sooner

rather than later. Good Luck! You're doing the best thing by

trying to " nip it in the bud " as much as possible!

Kerri

[Guest guest]

Debra,

Thanks for sharing your story. I will look for the book and try to start

working at home with him. I quit my job about 4 weeks ago, due to him not

adjusting at daycare. I made it 5 months in daycare and just wasn't getting any

better.

Thanks again

Tabitha

debjward <debjward@...> wrote:

When my son was 30 months old I felt it was time to seek a diagnosis

because he was not talking. My other three children started talking

at 24mos, 18mos, and 16 mos respectively.

I took my son to his pediatrician who referred us to our local

children's hospital (not really a childrens hospital it's just where

women with HMOs are sent to deliver their babies...) The waiting

list was 6-8 months long and they were not taking names (the list is

closed temporarily).

Then I looked on-line at the American Speech Language website and

got the name of a speech therapist. We saw her 4 times before my

hubby's company changed insurance companies (We only have one

choice - either the insurer they choose or none at all. We are

uninsurable since my son was born with birth defects. By law we can

get insurance through an employer.) My son was diagnosed with

apraxia.

When we got the new insurer we saw a different speech language

therapist. My son was diagnosed with dysarthria. We have been denied

coverage and we're appealing.

I called my states Early Intervention program but there is a waiting

list and my son is 34 mos old and you age out at 3. When your child

turns 3 you are to seek help from the elementary school your child

would attend (we're homeschoolers and my son is 3 years below the

age of compulsory education in my state (FL) but that is who you

call.) They won't see my son until he turns 3.

I applied to my local university's speech language program. It has a

2 year waiting list.

Now I am overwhelmed and frustrated. I ahve made an appointment with

a " developmental pediatrician " to get an official diagnosis. My son

was born with Poland's Syndrome. Everyone says it's an act of God by

my HMO won't pay for that!

My son says " mama " , " dada " , and " nana " . Otherwise he grunts and

cries. I know he wants to speak because when we read " Harry Potter

and the Goblet of Fire " for homeschool he says " Ah-ee ah-ah "

for " Harry Potter " .

Since we are fighting our HMO I am doing therapy at home. We use his

Ark XT chew toy and Nuk brush and I do stretches on his cheeks which

have low tone. " The Late Talker " book has ideas on things to do at

home.

Best wishes to you,

Debra

[Guest guest]

Karin

Thank you. We have seen a decline in his weight. He was 26 pounds at a year.

When he recieved his shots he got very sick and was in hospital for almost 2

weeks. They never found any thing wronge with him. He has not been the same

since then. He was on a antibiotic from October till Jan. for ear infection,

before they put the tubes in on Dec. 30. Well thanks we will be looking into

Dr.'s

Jerry and Karin <jkfeagles@...> wrote:

Sounds like my son a year and half ago! He had eating issuues from birth,

gagging,choking and aspirating. I had him evalulated for feeding first due

the stress of it I hadn't noticed the apraxia symptoms. They came to light

at about 18 to 24 months. I would think that if you are seeing a decline in

his weight you ought to get a second opinion. I have complained about

" picky eating " for a year and just one month ago got someone to evaluate.

He is gaining weight fine but eats about 5 different things. Everyone said

the same thing, picky. The OT sees every two weeks to help with integration

of new foods and rates him with moderate to severe senory integration

disorder. He never talked and still only has 5 words intelligible to me at

3. As for the antisocial bit...I know does not volunteer to play

with others at preschool and certainly didn't at 20 months. Does your son

interact with familiar people? If so, I wonder if the language barrier is

the problem. shys away from other kids but I think it's because he

can't communicate with them. At home is very alive with his 4 brothers and

sisters. Whatever the case, find someone who will listen. We have been in

early intervention since was 14 months and now are transitioning to

the School district. Although no one knew what was wrong at 14 months it

was obvious there was something there and 22 months later we are beginning

to get somewhere. Hang in there, Karin

[Guest guest]

debra

did you look into your local state health insurance for your child. i believe

the state's have low cost or no cost insurance for children with disabilities

(may be based on household income) so you can get around your hmo not paying for

speech and language and other related services until the school kicks in. I

also thing even if you plan on homeschooling, the state has an obligation to

pick up education services for your child to 'access learning or the

curriculum'. in your case that may include home OT/PT and or S/L. try to

contact your local special education parent advocacy committee or an educational

advocate/lawyer to help you.

good luck

debjward <debjward@...> wrote:

When my son was 30 months old I felt it was time to seek a diagnosis

because he was not talking. My other three children started talking

at 24mos, 18mos, and 16 mos respectively.

I took my son to his pediatrician who referred us to our local

children's hospital (not really a childrens hospital it's just where

women with HMOs are sent to deliver their babies...) The waiting

list was 6-8 months long and they were not taking names (the list is

closed temporarily).

Then I looked on-line at the American Speech Language website and

got the name of a speech therapist. We saw her 4 times before my

hubby's company changed insurance companies (We only have one

choice - either the insurer they choose or none at all. We are

uninsurable since my son was born with birth defects. By law we can

get insurance through an employer.) My son was diagnosed with

apraxia.

When we got the new insurer we saw a different speech language

therapist. My son was diagnosed with dysarthria. We have been denied

coverage and we're appealing.

I called my states Early Intervention program but there is a waiting

list and my son is 34 mos old and you age out at 3. When your child

turns 3 you are to seek help from the elementary school your child

would attend (we're homeschoolers and my son is 3 years below the

age of compulsory education in my state (FL) but that is who you

call.) They won't see my son until he turns 3.

I applied to my local university's speech language program. It has a

2 year waiting list.

Now I am overwhelmed and frustrated. I ahve made an appointment with

a " developmental pediatrician " to get an official diagnosis. My son

was born with Poland's Syndrome. Everyone says it's an act of God by

my HMO won't pay for that!

My son says " mama " , " dada " , and " nana " . Otherwise he grunts and

cries. I know he wants to speak because when we read " Harry Potter

and the Goblet of Fire " for homeschool he says " Ah-ee ah-ah "

for " Harry Potter " .

Since we are fighting our HMO I am doing therapy at home. We use his

Ark XT chew toy and Nuk brush and I do stretches on his cheeks which

have low tone. " The Late Talker " book has ideas on things to do at

home.

Best wishes to you,

Debra

[Guest guest]

The Shriner's is for orthopedic issues - we saw them in Tampa and a

long story short they delayed us so much (appts 7 mos apart) my son

lost the chance to have a toe to hand transplant at UCLA (We paid

$1K to fly to Los Angeles only to be told this but it did get us an

audience with a highly respected doctor who knows Poland's Syndrome)

(There is a lot of red tape with the Shriner's and they are very

slow) (The dr would always ask us " What's new? " and we'd be

wondering when they were going to help? We got surgeries through

private insurance).

I just managed to get an appt with our sons pediatrician to get a

diagnosis! I also learned the therapist's office

(beckmanoralmotor.com) sent her a fax to get my HMO to pay!!

Hopefully it will work out for him to get more visits since the HMO

will know it's neurological and not developmental in nature.

I think things may be working out!

*I didn't know about Easter Seals - I will look them up and call

tomorrow! Thank you!

> When my son was 30 months old I felt it was time to seek a

diagnosis

> because he was not talking. My other three children started

talking

> at 24mos, 18mos, and 16 mos respectively.

>

> I took my son to his pediatrician who referred us to our local

> children's hospital (not really a childrens hospital it's just

where

> women with HMOs are sent to deliver their babies...) The waiting

> list was 6-8 months long and they were not taking names (the list

is

> closed temporarily).

>

> Then I looked on-line at the American Speech Language website and

> got the name of a speech therapist. We saw her 4 times before my

> hubby's company changed insurance companies (We only have one

> choice - either the insurer they choose or none at all. We are

> uninsurable since my son was born with birth defects. By law we

can

> get insurance through an employer.) My son was diagnosed with

> apraxia.

>

> When we got the new insurer we saw a different speech language

> therapist. My son was diagnosed with dysarthria. We have been

denied

> coverage and we're appealing.

>

> I called my states Early Intervention program but there is a

waiting

> list and my son is 34 mos old and you age out at 3. When your

child

> turns 3 you are to seek help from the elementary school your child

> would attend (we're homeschoolers and my son is 3 years below the

> age of compulsory education in my state (FL) but that is who you

> call.) They won't see my son until he turns 3.

>

> I applied to my local university's speech language program. It has

a

> 2 year waiting list.

>

> Now I am overwhelmed and frustrated. I ahve made an appointment

with

> a " developmental pediatrician " to get an official diagnosis. My

son

> was born with Poland's Syndrome. Everyone says it's an act of God

by

> my HMO won't pay for that!

>

> My son says " mama " , " dada " , and " nana " . Otherwise he grunts and

> cries. I know he wants to speak because when we read " Harry Potter

> and the Goblet of Fire " for homeschool he says " Ah-ee ah-ah "

> for " Harry Potter " .

>

> Since we are fighting our HMO I am doing therapy at home. We use

his

> Ark XT chew toy and Nuk brush and I do stretches on his cheeks

which

> have low tone. " The Late Talker " book has ideas on things to do at

> home.

>

> Best wishes to you,

> Debra

[Guest guest]

Our state health insurance is income based. I am planning on re-

contacting the public school system once my son turns 3.

Thank you for your reply!

> When my son was 30 months old I felt it was time to seek a

diagnosis

> because he was not talking. My other three children started

talking

> at 24mos, 18mos, and 16 mos respectively.

>

> I took my son to his pediatrician who referred us to our local

> children's hospital (not really a childrens hospital it's just

where

> women with HMOs are sent to deliver their babies...) The waiting

> list was 6-8 months long and they were not taking names (the list

is

> closed temporarily).

>

> Then I looked on-line at the American Speech Language website and

> got the name of a speech therapist. We saw her 4 times before my

> hubby's company changed insurance companies (We only have one

> choice - either the insurer they choose or none at all. We are

> uninsurable since my son was born with birth defects. By law we

can

> get insurance through an employer.) My son was diagnosed with

> apraxia.

>

> When we got the new insurer we saw a different speech language

> therapist. My son was diagnosed with dysarthria. We have been

denied

> coverage and we're appealing.

>

> I called my states Early Intervention program but there is a

waiting

> list and my son is 34 mos old and you age out at 3. When your

child

> turns 3 you are to seek help from the elementary school your child

> would attend (we're homeschoolers and my son is 3 years below the

> age of compulsory education in my state (FL) but that is who you

> call.) They won't see my son until he turns 3.

>

> I applied to my local university's speech language program. It has

a

> 2 year waiting list.

>

> Now I am overwhelmed and frustrated. I ahve made an appointment

with

> a " developmental pediatrician " to get an official diagnosis. My

son

> was born with Poland's Syndrome. Everyone says it's an act of God

by

> my HMO won't pay for that!

>

> My son says " mama " , " dada " , and " nana " . Otherwise he grunts and

> cries. I know he wants to speak because when we read " Harry Potter

> and the Goblet of Fire " for homeschool he says " Ah-ee ah-ah "

> for " Harry Potter " .

>

> Since we are fighting our HMO I am doing therapy at home. We use

his

> Ark XT chew toy and Nuk brush and I do stretches on his cheeks

which

> have low tone. " The Late Talker " book has ideas on things to do at

> home.

>

> Best wishes to you,

> Debra

>

>

[Guest guest]

Iowa or not, I think they can do a free early intervention evaluation

before he is two. The earlier he starts with ST, OT, etc., the better.

Make the appt. now, then he will be two by the time they get around

to him.

Peace,

Kathy E.

On Mar 29, 2006, at 7:29 AM, Tabitha Yarolim wrote:

> Hello everyone. I don't know if I am in the right group at this

> point or not. My husband and I are very concerned about my 20 month

> old son. Explained by others he is antisocial, late talker, and not

> a good eater. Speech problems run in my family, including my

> brother. So I would really like to know what we are dealing with

> sooner than later.

>

> He does say MA, usually that is the only thing he can say. One time

> I thought he said what, but I'm sure since he has never said it

> again. He makes up sounds for things he wants, like he will make a

> sound with his tounge, and move it back and forth, we know this

> means he needs something to drink. He has never really talked or

> made sounds ever. Now that he is older it is like he is trying, but

> nothing coming out. If we say anything in a low voice, he kind of

> growls.

>

> He also does not interact with others. Explained by others as shy

> or antisocial, but he will actually have a screaming fit. We had to

> get a babysitter for my father's surprise B-day Party after only 15

> mins. due to him screaming the whole time.

>

> He also does not eat anything hot, cold, or slimey. He will eat

> cheese, but you have to let it set out for awhile so it is not

> really cold. Dry cereal is about all we get in him most of the

> time. He is not real small, but noticed his % have been

> decreasing. He is 23 pounds at 20 months.

>

> Well we have no idea at this point what to do. No one wants to

> eval. him until he is 2. We are in Iowa. I don't know if these

> things are connected or not.

>

> Well thank you for your time and any help would be appreciated.

> Also if you all agree with everyone else (he's just a late talker,

> antisocial, and not a good eater) I will have to agree. My gut

> tells me there is more to this than any one else sees.

>

> THank YOu

> Tabitha

>

>

>

>

>

>

>

>

[Guest guest]

Ann-

You have come to the right place! I've been a member since December and I'm

still amazed at the amount of knowledge and caring that show up in this group.

If you need info about almost anything, chances are someone in this group will

have the info or will know where you can get it. Everyone shows alot of caring

and compassion here. It's also a great place to vent when you're feeling

frustrated with the schools, your child, your family or just life in general.

God knows, we all need to blow off steam once in a while! Welcome!

Pat-mom to Josh (16 yo AS) and Sara (13 yo AS)

Ann <maryann1@...> wrote:

Hi. My name is Ann and I am new to this particular discussion

group. My 4 y.o. son was diagnosed with Sensory Processing Disorder

back in January and at the recommendation of a few people, we had a

private evaluation done, having been told the school district

basically has their own agenda and they won't necessarily do

anything if there are issues that won't affect his education. So we

had an evaluation done at a local child developmental center and lo

and behold, was also diagnosed PDD-NOS. The psychologist

said he is " borderline " for AS but she didn't want to diagnose him

as such because he is so young. After speaking with some other moms

in the area whose children have AS, we are convinced that is what is

going on with , as well. We have the social issues at

preschool (no friends, prefers to play alone, has trouble

interacting with other kids his age unless it is one-on-one, no

concept of the social do's and don'ts, etc.), obsession with certain

subjects (currently Power Rangers and the Tank Engine), some

OCD tendencies, advanced vocabulary for his age but forget carrying

on a typical conversation, etc. We have recently started running

into issues with intense rage over seemingly minor things (a toy

won't do what it is supposed to). He is an incredibly picky eater,

not sensory related. He will only eat a select number of foods and

even though we can occasionally get him to try new foods by playing

games (his OT plays a " taste tester " game with him), even if he says

he likes it, he won't eat it again. He is very much set in a few of

his rituals and lord help us if they are broken. We have an

appointment with a child psychologist to work on his behavioral

problems and I am going to my first AS parents' support group

meeting tonight and hope that between those meetings and this group,

I can start to get a little bit of a handle on how to deal with him

effectively and in the best way possible for all of us here before I

go crazy!

Anyway, I just wanted to introduce myself and say hello...

Ann

[Guest guest]

You need to call your new doc and get them to write you a letter of

medical necesity for the starband. They will know what you are

talking about. Then have them send that letter to your insurance

company. I don't know WHY all docs don't tell us that we need to

check with our ins co's to see if these things need to be pre

approved, etc. I know that my company would have covered it anyway

(Blue Cross Blue Shield), but I had a letter sent anyway, just so

they couldn't tell me that I missed a step. Wouldn't that be just

like an insurance co? I've had too many problems in the past to not

call first to see what paperwork they'll need, and when they'll need

it. ugh! I'm sorry that they're being a pain, but you really need

to fight to get it covered. I bet they will in the end. GOOD LUCK!

>

> Hi everyone-

> My son is 8 months old and has had positional plagiocephaly from

birth.

> He had a severe flat spot on the right side and brachycephaly was

soon

> to follow. My son has had more tummy time than any other baby I

know,

> and we rarely put him on his back. We tried to re-position

him...never

> worked.The doctor kept saying " It will round out " ...I'm sure

you've

> heard that one, too. She made me feel so stupid when I tried to

get a

> referral for a spceialist. 8 months later we've changed doctors

and he

> finally got a Star Band. He's on day 6 of the band. I'm just

hoping to

> see some results. We had to pay $1500 b/c the insurance said it

was

> possibly cosmetic. I'm just a little depressed that I waited so

long

> instead of trusting my instinct that I should have been more

assertive

> from day one. Do you think I'll see results even though I started

at 8

> months? Thanks for any input you may have. Also, my son is sooooo

> sweaty in the band. Any suggestions?

> Thank you!

> Cyndi, mommy to Dylan

> Starband for plagio/brach on 4/4/06

>

[Guest guest]

Hello and welcome. It's all too often the case that Drs say " it'll

round out on its own " . It isn't your fault AT ALL! Don't feel bad

about it. Yes, he should still be able to get GREAT correction at

his age. My Daughter got her band at 7mo 1wk and only had to wear it

for 11 weeks and got great correction. There have been MANY babies

who didn't get banded until close to a year old (some later) and they

still got very good results.

As far as him being sweaty... just make sure that you keep him

dressed very lightly... he'll get more used to the temperature change

as he wears the band more.

Good luck and keep us updated.

Jen

(20 mo), tort resolved, Hanger Band Grad

(4 years)

>

> Hi everyone-

> My son is 8 months old and has had positional plagiocephaly from

birth.

> He had a severe flat spot on the right side and brachycephaly was

soon

> to follow. My son has had more tummy time than any other baby I

know,

> and we rarely put him on his back. We tried to re-position

him...never

> worked.The doctor kept saying " It will round out " ...I'm sure you've

> heard that one, too. She made me feel so stupid when I tried to get

a

> referral for a spceialist. 8 months later we've changed doctors and

he

> finally got a Star Band. He's on day 6 of the band. I'm just hoping

to

> see some results. We had to pay $1500 b/c the insurance said it was

> possibly cosmetic. I'm just a little depressed that I waited so

long

> instead of trusting my instinct that I should have been more

assertive

> from day one. Do you think I'll see results even though I started

at 8

> months? Thanks for any input you may have. Also, my son is sooooo

> sweaty in the band. Any suggestions?

> Thank you!

> Cyndi, mommy to Dylan

> Starband for plagio/brach on 4/4/06

>

[Guest guest]

Don't worry about your son being 8mo...My son, Max, was 8months when

he finally got his DOCband(I had no clue what plagio and repositioning

were!). He's 10mos now and his head has rounded out very nicely. I

didn't see anything the first month and got really depressed(we too

had to pay cash b/c insurance people are a bunch of tools!). But

within 2 weeks into month 2, I saw major improvement and it's been

getting better ever since. He only has about 1 more month(but his

plagio wasn't severe).

As far as sweating-Max is a total hot box! I would towl off his head

after he woke up in the morning and after naps. After about 3-4days,

he wasn't so sweaty. But I still have to towl him off about once a

day. Hope that helps! Bye, (Max DOCbanded 2/7)

>

> Hi everyone-

> My son is 8 months old and has had positional plagiocephaly from birth.

> He had a severe flat spot on the right side and brachycephaly was soon

> to follow. My son has had more tummy time than any other baby I know,

> and we rarely put him on his back. We tried to re-position him...never

> worked.The doctor kept saying " It will round out " ...I'm sure you've

> heard that one, too. She made me feel so stupid when I tried to get a

> referral for a spceialist. 8 months later we've changed doctors and he

> finally got a Star Band. He's on day 6 of the band. I'm just hoping to

> see some results. We had to pay $1500 b/c the insurance said it was

> possibly cosmetic. I'm just a little depressed that I waited so long

> instead of trusting my instinct that I should have been more assertive

> from day one. Do you think I'll see results even though I started at 8

> months? Thanks for any input you may have. Also, my son is sooooo

> sweaty in the band. Any suggestions?

> Thank you!

> Cyndi, mommy to Dylan

> Starband for plagio/brach on 4/4/06

>