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,

I used to livein Columbus too when dh was stationed at Ft Benning.

I thought that there was Starband treatment in Columbus?

Natasha

> > > > >

> > > > > My name is and dd got her STARband Thursday, so I

> > > thought I

> > > > > would go ahead and intro. myself. She was 8 months old

> Friday

> > > and

> > > > > has a moderate case of brachycephaly. We live in GA and

are

> > > going

> > > > > to Atlanta for orthotist visits at Children's Healthcare.

> > > Anyway, I

> > > > > am sure you guys will get tired of my questions, and I

> wanted

> > to

> > > > > prepare you! LOL! Hopefully, she will be out of it by

her

> > > first

> > > > > birthday. (Hopefully, much sooner...)

> > > > >

> > > > > She seems to be adjusting well, we just have to get used

to

> it

> > > (dh

> > > > > and I!) She doesn't even look like the same child w/it

on.

> > It

> > > > > smooshes her little face and pushes all of her baby fat

> > forward,

> > > > > making her eyes droop. Is this normal? Could it mean an

> > > improper

> > > > > fit? I laughed when the orthotist told me that some

people

> > ask

> > > if

> > > > > their child's face will stay that way (when I said it was

> > > smooshing

> > > > > her eyes down) thinking how silly, but now I see why

people

> > > worry

> > > > > about things like that! LOL! (Surely it won't

permanently

> > > alter

> > > > > her face, squinching it up forever?!?!?!)

> > > > >

> > > > > This is a great group to find and I can only imagine how

> many

> > > > > countless moms have found an immense amount of support and

> > > advice

> > > > > here.

> > > > >

> > > > > Looking forward to getting to know you.

> > > > >

> > > > > dd Avery 5/26/05

> > > > >

> > > >

> > >

> >

>

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How long were you here in Columbus? We have been here almost two

years now... Time flies. My bil is in the Army and my fil was, but

dh is not. His family is from this area, so he has always wanted to

get back here. Where are you guys now?

There is a place here, but our neurosurgeon said that he hadn't

heard good things about them and wanted me to go to CHOA. So, we

took his word for it and are going to drive every two weeks for

appts. At least there is an office in Fayetteville!

Shan

> > > > > >

> > > > > > My name is and dd got her STARband Thursday, so

I

> > > > thought I

> > > > > > would go ahead and intro. myself. She was 8 months old

> > Friday

> > > > and

> > > > > > has a moderate case of brachycephaly. We live in GA and

> are

> > > > going

> > > > > > to Atlanta for orthotist visits at Children's

Healthcare.

> > > > Anyway, I

> > > > > > am sure you guys will get tired of my questions, and I

> > wanted

> > > to

> > > > > > prepare you! LOL! Hopefully, she will be out of it by

> her

> > > > first

> > > > > > birthday. (Hopefully, much sooner...)

> > > > > >

> > > > > > She seems to be adjusting well, we just have to get used

> to

> > it

> > > > (dh

> > > > > > and I!) She doesn't even look like the same child w/it

> on.

> > > It

> > > > > > smooshes her little face and pushes all of her baby fat

> > > forward,

> > > > > > making her eyes droop. Is this normal? Could it mean

an

> > > > improper

> > > > > > fit? I laughed when the orthotist told me that some

> people

> > > ask

> > > > if

> > > > > > their child's face will stay that way (when I said it

was

> > > > smooshing

> > > > > > her eyes down) thinking how silly, but now I see why

> people

> > > > worry

> > > > > > about things like that! LOL! (Surely it won't

> permanently

> > > > alter

> > > > > > her face, squinching it up forever?!?!?!)

> > > > > >

> > > > > > This is a great group to find and I can only imagine how

> > many

> > > > > > countless moms have found an immense amount of support

and

> > > > advice

> > > > > > here.

> > > > > >

> > > > > > Looking forward to getting to know you.

> > > > > >

> > > > > > dd Avery 5/26/05

> > > > > >

> > > > >

> > > >

> > >

> >

>

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Share on other sites

How long were you here in Columbus? We have been here almost two

years now... Time flies. My bil is in the Army and my fil was, but

dh is not. His family is from this area, so he has always wanted to

get back here. Where are you guys now?

There is a place here, but our neurosurgeon said that he hadn't

heard good things about them and wanted me to go to CHOA. So, we

took his word for it and are going to drive every two weeks for

appts. At least there is an office in Fayetteville!

Shan

> > > > > >

> > > > > > My name is and dd got her STARband Thursday, so

I

> > > > thought I

> > > > > > would go ahead and intro. myself. She was 8 months old

> > Friday

> > > > and

> > > > > > has a moderate case of brachycephaly. We live in GA and

> are

> > > > going

> > > > > > to Atlanta for orthotist visits at Children's

Healthcare.

> > > > Anyway, I

> > > > > > am sure you guys will get tired of my questions, and I

> > wanted

> > > to

> > > > > > prepare you! LOL! Hopefully, she will be out of it by

> her

> > > > first

> > > > > > birthday. (Hopefully, much sooner...)

> > > > > >

> > > > > > She seems to be adjusting well, we just have to get used

> to

> > it

> > > > (dh

> > > > > > and I!) She doesn't even look like the same child w/it

> on.

> > > It

> > > > > > smooshes her little face and pushes all of her baby fat

> > > forward,

> > > > > > making her eyes droop. Is this normal? Could it mean

an

> > > > improper

> > > > > > fit? I laughed when the orthotist told me that some

> people

> > > ask

> > > > if

> > > > > > their child's face will stay that way (when I said it

was

> > > > smooshing

> > > > > > her eyes down) thinking how silly, but now I see why

> people

> > > > worry

> > > > > > about things like that! LOL! (Surely it won't

> permanently

> > > > alter

> > > > > > her face, squinching it up forever?!?!?!)

> > > > > >

> > > > > > This is a great group to find and I can only imagine how

> > many

> > > > > > countless moms have found an immense amount of support

and

> > > > advice

> > > > > > here.

> > > > > >

> > > > > > Looking forward to getting to know you.

> > > > > >

> > > > > > dd Avery 5/26/05

> > > > > >

> > > > >

> > > >

> > >

> >

>

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  • 9 months later...

Help! I had a rash that I thought was a drug reaction, but they did a

biopsy and ran some tests and told me I have Mixed Connective Tissue

Disease. I have a speckled ANA and a positive RNP or something. All

other tests were negative.

I just found out yesterday and feel like I want to die. I have three

small children under the age of five ... who will take care of them?

Also, I play the piano for a living; I guess no more? How many years

til I'm completely crippled and debilitated? I'm not even forty yet!

If someone could post, or e-mail me personally, about what living with

this has been like for you, especially if you have young children, I

would really appreciate it.

BeanMommy2@...

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Hello, , and welcome -

Please do not think of this diagnosis as being the end

to all that you hold dear, or the end of your

enjoyment in life. With the proper medication, you

should be able to continue all that you have talked

about. Yes, there might be some compromises due to

pain and/or joint problems, but I have had RA for 7

years now, and am able to even ride my horse still!

I know that it will be hard for you sometimes with

small children to care for, but you will be able to

take care of them. Children adjust very well to

whatever comes their way. My kids were older, 13 and

16, when I was diagnosed, and taking care of teens is

no walk in the park either!

I also have been diagnosed since then with

Fibromyalgia, OA, and Raynaud's syndrome. We have a

small farm here, and have horses, dogs, cats, and a

large number of fowl including chickens, and I care

for them all, with only some help at times. I am on

the correct medication for my RA and my other

problems, and, most of all, have not given in to the

fears of ending up crippled. My grandmother had RA,

and was crippled, but the medications we have now are

soooo much better than anything she had available when

she was diagnosed.

Do not give up, do not take this as a sentence of

never again being able to do things that you enjoy

doing, okay? Stress that you will cause yourself by

worrying like this will only cause more pain, believe

me, I know.

Has your doctor discussed how you are going to treat

the Mixed Connective Tissue disease? Prompt and

aggressive treatment will help in your longterm

outlook. Please let us know how you are doing - let

your husband also know how you are feeling, don't keep

him out of this thinking you are protecting him, you

need his love and support now more than ever. You

will be okay - we are here for you - hang in there -

Kathe in CA

--- beanmommy2 <beanmommy2@...> wrote:

> Help! I had a rash that I thought was a drug

> reaction, but they did a

> biopsy and ran some tests and told me I have Mixed

> Connective Tissue

> Disease. I have a speckled ANA and a positive RNP or

> something. All

> other tests were negative.

>

> I just found out yesterday and feel like I want to

> die. I have three

> small children under the age of five ... who will

> take care of them?

> Also, I play the piano for a living; I guess no

> more? How many years

> til I'm completely crippled and debilitated? I'm not

> even forty yet!

>

> If someone could post, or e-mail me personally,

> about what living with

> this has been like for you, especially if you have

> young children, I

> would really appreciate it.

>

>

> BeanMommy2@...

>

>

>

>

>

>

>

________________________________________________________________________________\

____

Want to start your own business?

Learn how on Small Business.

http://smallbusiness./r-index

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  • 1 month later...

The best thing you could do for him is to get him to use sign while

you are working on the speech. All the old school thoughts of how it

delays speech are WRONG. It actually augments speech. It teaches

their brains the concept of language and communication. Sign

language is a language, and it is key to get them processing

language at this point in their development. Look into

signingtime.com. Great videos. Once my son realized there was a way

to get us to understand him...his sign communication took off and he

was signing 2-3 word sentences even though he was non-verbal. I

even found him signing in his sleep one night!! Sign language was

truly his first language. But as speech came...he was 100%

unintelligible. This is where sign helped once again. He usually

knew 1 or 2 signs that could give us a clue as to what he was

talking about...and we could figure out what he was saying...then

take it as an opportunity to work on his speech error to get a near

approximation.

Don't hold back on sign. It was the best thing we did for my son

last summer...but should have done it sooner. We started at 23

months - but knew there was " a problem " for a while before then.

Just hoping the " late bloomer " would catch up.

I can't believe the speech therapist said he was " fine " . Surely it

sounds like he was at the 9-12 month range for expressive

language...which means you would have qualified for free state

intervention through your regional center. Get an appt for an

evaluation with your state early intervention center ...these

services are free until age 3 when they transition to the school

district. It seems at least in California that the regional center

offered us more than the school district. But by the time most

people are getting a diagnosis, the child is already over 3 and

you've missed out on the opportunity to utilize this free and often

excellent system. -

> Hi All!

> My name is and I am mom to 2 boys Hunter (5) and Brayden

(will

> be 2 on Jan. 10th). Hunter was a VERY earlier talker so this is

> something that is new for us. When we took Brayden to his 18

month

> appointment, the ped asked how many words he was saying. At that

> time it was mama, dada, ball, car and bye-bye. He told us that he

> just wanted him evaluated in case there was a problem, we could

> catch it early. The speech therapist said that he was fine, just

> seemed not to want to talk. She told us to start doing simple

signs

> with him to cut down on some of his frustration and that he still

> wasn't talking in a year, to bring him back. Well, it's been 6

> months and he now says 2 words (mama and dada) won't even say

those

> other words anymore. He does about 5 signs. He could do more,

but

> I have been reluctant to have him depending too much on signs

> because I'm not sure if it would delay the talking even more. Any

> suggestions or should I just wait it out?

> I will be looking over the posts on here over the next couple of

> days for ideas also!

> Thanks so much!

> in Florida

>

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Hi :

I have two boys, one is 6 and Landon is 3. My 6 year old was talking

circles around us by the time he was a year old. Landon was like

your second child. At 18 months he had 3 words and we heard others

before this age, but he lost them as soon as he said them. The only

words that stuck with him was mama, dada, and Ayen(Hayden). Losing

words is a symptom of apraxia. Since he is under 3 years old you can

get in touch with Early Intervention and have him evaluated again.

My Pediatrician referred Landon and within a month he started getting

therapy.

Sign language is good for many reasons. Children with apraxia know

what they want to say, but because of motor planning problems they

can't get the words out. This then leads to frustration. Sign

language helps to cut down on the frustration. It also helps them

learn the word as they are signing. Everytime you sign, make sure

you are signing and saying the word at the same time.

Tina

>

> Hi All!

> My name is and I am mom to 2 boys Hunter (5) and Brayden

(will

> be 2 on Jan. 10th). Hunter was a VERY earlier talker so this is

> something that is new for us. When we took Brayden to his 18 month

> appointment, the ped asked how many words he was saying. At that

> time it was mama, dada, ball, car and bye-bye. He told us that he

> just wanted him evaluated in case there was a problem, we could

> catch it early. The speech therapist said that he was fine, just

> seemed not to want to talk. She told us to start doing simple

signs

> with him to cut down on some of his frustration and that he still

> wasn't talking in a year, to bring him back. Well, it's been 6

> months and he now says 2 words (mama and dada) won't even say those

> other words anymore. He does about 5 signs. He could do more, but

> I have been reluctant to have him depending too much on signs

> because I'm not sure if it would delay the talking even more. Any

> suggestions or should I just wait it out?

> I will be looking over the posts on here over the next couple of

> days for ideas also!

> Thanks so much!

> in Florida

>

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Hey :

I forgot to mention in my earlier message to consider giving your

child ProEFA and ProEPA.

https://www.nordicnaturals.com/direct/Retailproducts.asp

cheaper here:

http://www.goestores.com/catalog.aspx?

Merchant=shopinserviceinc2 & DeptID=228642

Once we started the ProEFA, Landon started to say more words, and he

stopped losing words. The ProEFA also helped with his sensory issues.

We started out with one ProEFA, 6 months later added another ProEFA,

6 months later added the ProEPA, and then upped it shortly after that

to the higher doses being used now. Now some are starting out with 2

ProEFA and 1 ProEPA.

You will hear more about EFA's and Vitamin E as you read on.

A good book to read is The Late Talker What to Do If Your Child Isn't

Talking Yet by Marilyn C. Agin; F. Geng; Malcolm J. Nicholl

Tina

>

> Hi All!

> My name is and I am mom to 2 boys Hunter (5) and Brayden

(will

> be 2 on Jan. 10th). Hunter was a VERY earlier talker so this is

> something that is new for us. When we took Brayden to his 18 month

> appointment, the ped asked how many words he was saying. At that

> time it was mama, dada, ball, car and bye-bye. He told us that he

> just wanted him evaluated in case there was a problem, we could

> catch it early. The speech therapist said that he was fine, just

> seemed not to want to talk. She told us to start doing simple

signs

> with him to cut down on some of his frustration and that he still

> wasn't talking in a year, to bring him back. Well, it's been 6

> months and he now says 2 words (mama and dada) won't even say those

> other words anymore. He does about 5 signs. He could do more, but

> I have been reluctant to have him depending too much on signs

> because I'm not sure if it would delay the talking even more. Any

> suggestions or should I just wait it out?

> I will be looking over the posts on here over the next couple of

> days for ideas also!

> Thanks so much!

> in Florida

>

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