Introduction

November 29, 2010

Welcome Amber. You'll find plenty of company here, and most of us are more than familiar (sigh) with difficult behavior in our children, and very supportive and helpful. You aren't alone.

Love,

Francine

p.s. and if it's any consolation right now, You will love the person You are becoming through all these trials. Our love for our children carries us.

Speak with Him Thou for He hearest.

Spirit with Spirit can speak.

Closer is Love than breathing,

Nearer than hands and feet.

(with appreciation for Tennyson)

Introduction

Hi,

My name is Amber and I just wanted to take the time to introduce myself. I am a single mom of 3 boys who are 8, 5 and 2 years old. My oldest son was diagnosed with Aspergers when he was 5 years old. After trying to resist medications I gave in because he was becoming very violent towards me and other people, his anxiety was causing him to act out and withdraw from everything. We have tried many different meds and finally getting some sort of balance but still things don't always work like it should. Joined the group to talk with others like me as I don't have any friends that really understand what my life is like daily facing the challenges with my son.

Thank you for reading this I look forward to reading posts from others and learning new ways to help my son.

Amber

November 29, 2010

Thank you, yes I have become a stronger person since my divorce and then the

diagnosis. My exhusband couldn't handle our son :-( but we have pushed through.

Moved to a different city just to get him better help and found a public school

willing to take on the challenges of helping him grow socially. His outburst

physically are the worst as I often fear what he may do to me or his younger

brothers but we are working through it. Therapy once a week and meetings with

the psychiatrist that is well experienced with Aspergers takes place once a

month. He got Cat Scratch Fever in August which made him very ill so the

hospital stay at childrens was a nightmare for him being stuck in that bed with

all those Dr's and nurses touching him. So hard to watch my son struggle. He

use to talk of dreams of being in the airforce and joining the police force and

fire department then all of a sudden now he says he can't do those things and

spends more time being frustrated and angry about everything.

>

> Welcome Amber.Â You'll find plenty of company here, and most of us are more

than familiar (sigh) with difficult behavior in our children, and very

supportive and helpful.Â You aren't alone.

> Â

> Love,

> Francine

> Â

> p.s. and if it's any consolation right now, You will love the person You are

becoming through all these trials.Â Our love for our children carries us.

>

> Speak with Him Thou for He hearest.

> Spirit with Spirit can speak.

> Closer is Love than breathing,

> Nearer than hands and feet.

>

> (with appreciation for Tennyson)

>

> Introduction

>

> Â Hi,

>

> My name is Amber and I just wanted to take the time to introduce myself. I am

a single mom of 3 boys who are 8, 5 and 2 years old. My oldest son was diagnosed

with Aspergers when he was 5 years old. After trying to resist medications I

gave in because he was becoming very violent towards me and other people, his

anxiety was causing him to act out and withdraw from everything. We have tried

many different meds and finally getting some sort of balance but still things

don't always work like it should. Joined the group to talk with others like me

as I don't have any friends that really understand what my life is like daily

facing the challenges with my son.

>

> Thank you for reading this I look forward to reading posts from others and

learning new ways to help my son.

>

> Amber

>

November 29, 2010

Welcome to the group Amber. You're right, people, including family think you're making a big thing out of nothing. Talking to others in the group does help.

From: AG <mom2cyandmark@...>Autism and Aspergers Treatment Sent: Sun, November 28, 2010 6:04:48 PMSubject: Introduction

Hi, My name is Amber and I just wanted to take the time to introduce myself. I am a single mom of 3 boys who are 8, 5 and 2 years old. My oldest son was diagnosed with Aspergers when he was 5 years old. After trying to resist medications I gave in because he was becoming very violent towards me and other people, his anxiety was causing him to act out and withdraw from everything. We have tried many different meds and finally getting some sort of balance but still things don't always work like it should. Joined the group to talk with others like me as I don't have any friends that really understand what my life is like daily facing the challenges with my son. Thank you for reading this I look forward to reading posts from others and learning new ways to help my son. Amber

November 29, 2010

I hope the G-word doesn't offend You, (if it does, please skip this paragraph!) and for a little boy, God can be tremendous help, just knowing that He has this super Help beyond what he thinks he can do. You don't mention his reading, and the American Bible Society has (or had) some nice easy read childsize books. Whatever religion one is or chooses, there is always a good example of one triumphing over great odds, whether Moses, Elijah, Jesus ... each religion has people who heard a different drum and were blessed.

*~*~*

Any time he is able not to be violent or have a scene, You can commend his courage in taking charge of his behavior. If he hasn't yet done that, he can be encouraged and will. From my own experience, I just know the right ideas will come to You for your family.

Love,

Francine

Speak with Him Thou for He hearest.

Spirit with Spirit can speak.

Closer is Love than breathing,

Nearer than hands and feet.

(with appreciation for Tennyson)

Introduction

>

> Ã‚ Hi,

>

> My name is Amber and I just wanted to take the time to introduce myself. I am a single mom of 3 boys who are 8, 5 and 2 years old. My oldest son was diagnosed with Aspergers when he was 5 years old. After trying to resist medications I gave in because he was becoming very violent towards me and other people, his anxiety was causing him to act out and withdraw from everything. We have tried many different meds and finally getting some sort of balance but still things don't always work like it should. Joined the group to talk with others like me as I don't have any friends that really understand what my life is like daily facing the challenges with my son.

>

> Thank you for reading this I look forward to reading posts from others and learning new ways to help my son.

>

> Amber

>

July 18, 2011

Welcome to the group! From the x-rays did they give you a degree that the curve is at? I am sorry about your experience with the x-rays, not fun! Our son started out the exact same way with the torticolis and then PT, Xray, wait and see for 3 months and then referral to an Orthopedist, 2 MRI's, a CT scan, another Xray which showed a progression of his curve from 23 degrees to 50. Finally Children's in Seattle advised us to brace which we almost did until we found this group. I found a local Shriner's Hospital that did the Mehta casting and we feel so fortunate that we did. Hang in there, the anxiety and stress is completely normal. Just know that you are at the right resource for infantile scoliosis with this group and be the best advocate that

you can be for your child. Where are you located? Best of luck to you and your family! SonjaFrom: messyyesi <yespick >@gmail.cominfantile scoliosis treatment Sent: Sat, July 16, 2011 8:21:40 PMSubject: Introduction

Hello Everyone!

I'm new to the group and wanted to introduce myself. I'm a first time mother to a beautiful 3-month old named Ximena. Immediately from birth I noticed she had a head tilt. She was diagnosed with torticollis right away (a shortening of a neck muscle making the baby tilt their head in one direction and only able to fully turn in another). We started physical therapy right away and it began to help. But during her physical therapy sessions, her therapist and I noticed that she slouched quite a bit. As a first time mom, I just figured it was because she was so little and couldn't hold herself up straight. After a few weeks an no improvement, the therapist suggested that I bring it up to her pediatrician. So the a few weeks ago I did just that. Our pediatrician sent us to get X-Rays twice. The first time was horrible. They held my baby girl down tight, and used these sponge clamps to hold her head straight, all while she was screaming her little

lungs out. After getting those x-rays, the pediatrician sent us to get another set (I went to a different place and this time it was so easy).

Anyways, the doctor said that it looks like she has scoliosis and referred us to Children's Hospital nearby. Unfortunately we couldn't get our appointment until October. So here we are... 3 months away from our appointment and I have no idea what to expect or how bad the curve is. I'm super careful of how I hold and position Ximena because I don't want to make it worse. (I won't let her use her Bumbo seat because I'm afraid it'll strain her back and make the curve worse).

Since I'm so far away from the appointment, I've been having extreme anxiety and don't know what to expect. Does anyone have any advice or let me know what I should expect from my first few doctor's visits?

July 18, 2011

Hey and welcome!

TUMMY TIME, TUMMY TIME, TUMMY TIME! That is going to help her the most with not letting her curve progress as fast. Gravity is going to be her enemy.

Logan's mama (45 down to 9 out of cast, 9th cast, 2 years old)

From: messyyesi <yespick@...>infantile scoliosis treatment Sent: Sat, July 16, 2011 11:21:40 PMSubject: Introduction

Hello Everyone!I'm new to the group and wanted to introduce myself. I'm a first time mother to a beautiful 3-month old named Ximena. Immediately from birth I noticed she had a head tilt. She was diagnosed with torticollis right away (a shortening of a neck muscle making the baby tilt their head in one direction and only able to fully turn in another). We started physical therapy right away and it began to help. But during her physical therapy sessions, her therapist and I noticed that she slouched quite a bit. As a first time mom, I just figured it was because she was so little and couldn't hold herself up straight. After a few weeks an no improvement, the therapist suggested that I bring it up to her pediatrician. So the a few weeks ago I did just that. Our pediatrician sent us to get X-Rays twice. The first time was horrible. They held my baby girl down tight, and used these sponge clamps to hold her head straight, all while she was

screaming her little lungs out. After getting those x-rays, the pediatrician sent us to get another set (I went to a different place and this time it was so easy). Anyways, the doctor said that it looks like she has scoliosis and referred us to Children's Hospital nearby. Unfortunately we couldn't get our appointment until October. So here we are... 3 months away from our appointment and I have no idea what to expect or how bad the curve is. I'm super careful of how I hold and position Ximena because I don't want to make it worse. (I won't let her use her Bumbo seat because I'm afraid it'll strain her back and make the curve worse).Since I'm so far away from the appointment, I've been having extreme anxiety and don't know what to expect. Does anyone have any advice or let me know what I should expect from my first few doctor's visits?

July 19, 2011

Welcome to Cast. May I recommend a few things to get you started? Pls read Growth as a corrective force in the Early Treatment of progressive infantile scoliosis,” by Mehta and view A New Direction DVD….The dvd can be found on the youtube section of www.infantilescoliosis.org and can be viewed in 3 parts. It will give you great direction in holding your daughter as to try and avoid further progression while you wait….ISOP can also send you a New Direction DVD, if you like. These 2 items will help you to better understand the necessity of getting your daughter treated early w/ EDF/Mehta casting if she has a progressive case of infantile scoliosis. Did the ortho or radiological tech happen to give you and measurement #’s like a Cobb angle or RVAD to help determine and/or appreciate the pattern of progression?HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of messyyesiSent: Saturday, July 16, 2011 9:22 PMinfantile scoliosis treatment Subject: Introduction Hello Everyone!I'm new to the group and wanted to introduce myself. I'm a first time mother to a beautiful 3-month old named Ximena. Immediately from birth I noticed she had a head tilt. She was diagnosed with torticollis right away (a shortening of a neck muscle making the baby tilt their head in one direction and only able to fully turn in another). We started physical therapy right away and it began to help. But during her physical therapy sessions, her therapist and I noticed that she slouched quite a bit. As a first time mom, I just figured it was because she was so little and couldn't hold herself up straight. After a few weeks an no improvement, the therapist suggested that I bring it up to her pediatrician. So the a few weeks ago I did just that. Our pediatrician sent us to get X-Rays twice. The first time was horrible. They held my baby girl down tight, and used these sponge clamps to hold her head straight, all while she was screaming her little lungs out. After getting those x-rays, the pediatrician sent us to get another set (I went to a different place and this time it was so easy). Anyways, the doctor said that it looks like she has scoliosis and referred us to Children's Hospital nearby. Unfortunately we couldn't get our appointment until October. So here we are... 3 months away from our appointment and I have no idea what to expect or how bad the curve is. I'm super careful of how I hold and position Ximena because I don't want to make it worse. (I won't let her use her Bumbo seat because I'm afraid it'll strain her back and make the curve worse).Since I'm so far away from the appointment, I've been having extreme anxiety and don't know what to expect. Does anyone have any advice or let me know what I should expect from my first few doctor's visits?

July 21, 2011

Thanks. I read the article, but have not yet watched the video. We haven't seen

the ortho yet, and the xrays tech didn't give us any info yet. Luckily

Though, we got our ortho appt move to august so we don't have to wait until

October anymore.

>

> Welcome to Cast. May I recommend a few things to get you started? Pls read

> Growth as a corrective force in the Early Treatment of progressive infantile

> scoliosis, " by Mehta and view A New Direction DVD..The dvd can be found on

> the youtube section of www.infantilescoliosis.org and can be viewed in 3

> parts. It will give you great direction in holding your daughter as to try

> and avoid further progression while you wait..ISOP can also send you a New

> Direction DVD, if you like. These 2 items will help you to better

> understand the necessity of getting your daughter treated early w/ EDF/Mehta

> casting if she has a progressive case of infantile scoliosis. Did the ortho

> or radiological tech happen to give you and measurement #'s like a Cobb

> angle or RVAD to help determine and/or appreciate the pattern of

> progression?

>

> HRH

>

> From: infantile scoliosis treatment

> [mailto:infantile scoliosis treatment ] On Behalf Of messyyesi

> Sent: Saturday, July 16, 2011 9:22 PM

> infantile scoliosis treatment

> Subject: Introduction

>

> Hello Everyone!

>

> I'm new to the group and wanted to introduce myself. I'm a first time mother

> to a beautiful 3-month old named Ximena. Immediately from birth I noticed

> she had a head tilt. She was diagnosed with torticollis right away (a

> shortening of a neck muscle making the baby tilt their head in one direction

> and only able to fully turn in another). We started physical therapy right

> away and it began to help. But during her physical therapy sessions, her

> therapist and I noticed that she slouched quite a bit. As a first time mom,

> I just figured it was because she was so little and couldn't hold herself up

> straight. After a few weeks an no improvement, the therapist suggested that

> I bring it up to her pediatrician. So the a few weeks ago I did just that.

> Our pediatrician sent us to get X-Rays twice. The first time was horrible.

> They held my baby girl down tight, and used these sponge clamps to hold her

> head straight, all while she was screaming her little lungs out. After

> getting those x-rays, the pediatrician sent us to get another set (I went to

> a different place and this time it was so easy).

>

> Anyways, the doctor said that it looks like she has scoliosis and referred

> us to Children's Hospital nearby. Unfortunately we couldn't get our

> appointment until October. So here we are... 3 months away from our

> appointment and I have no idea what to expect or how bad the curve is. I'm

> super careful of how I hold and position Ximena because I don't want to make

> it worse. (I won't let her use her Bumbo seat because I'm afraid it'll

> strain her back and make the curve worse).

>

> Since I'm so far away from the appointment, I've been having extreme anxiety

> and don't know what to expect. Does anyone have any advice or let me know

> what I should expect from my first few doctor's visits?

>

July 25, 2011

The wait and watch approach is not the best plan for PIS. Excellent news on getting the appt. moved up to August! Please keep us posted.HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of messyyesiSent: Thursday, July 21, 2011 10:41 AMinfantile scoliosis treatment Subject: Re: Introduction Thanks. I read the article, but have not yet watched the video. We haven't seen the ortho yet, and the xrays tech didn't give us any info yet. LuckilyThough, we got our ortho appt move to august so we don't have to wait until October anymore. >> Welcome to Cast. May I recommend a few things to get you started? Pls read> Growth as a corrective force in the Early Treatment of progressive infantile> scoliosis, " by Mehta and view A New Direction DVD..The dvd can be found on> the youtube section of www.infantilescoliosis.org and can be viewed in 3> parts. It will give you great direction in holding your daughter as to try> and avoid further progression while you wait..ISOP can also send you a New> Direction DVD, if you like. These 2 items will help you to better> understand the necessity of getting your daughter treated early w/ EDF/Mehta> casting if she has a progressive case of infantile scoliosis. Did the ortho> or radiological tech happen to give you and measurement #'s like a Cobb> angle or RVAD to help determine and/or appreciate the pattern of> progression?> > HRH> > > > From: infantile scoliosis treatment > [mailto:infantile scoliosis treatment ] On Behalf Of messyyesi> Sent: Saturday, July 16, 2011 9:22 PM> infantile scoliosis treatment > Subject: Introduction> > > > > > Hello Everyone!> > I'm new to the group and wanted to introduce myself. I'm a first time mother> to a beautiful 3-month old named Ximena. Immediately from birth I noticed> she had a head tilt. She was diagnosed with torticollis right away (a> shortening of a neck muscle making the baby tilt their head in one direction> and only able to fully turn in another). We started physical therapy right> away and it began to help. But during her physical therapy sessions, her> therapist and I noticed that she slouched quite a bit. As a first time mom,> I just figured it was because she was so little and couldn't hold herself up> straight. After a few weeks an no improvement, the therapist suggested that> I bring it up to her pediatrician. So the a few weeks ago I did just that.> Our pediatrician sent us to get X-Rays twice. The first time was horrible.> They held my baby girl down tight, and used these sponge clamps to hold her> head straight, all while she was screaming her little lungs out. After> getting those x-rays, the pediatrician sent us to get another set (I went to> a different place and this time it was so easy). > > Anyways, the doctor said that it looks like she has scoliosis and referred> us to Children's Hospital nearby. Unfortunately we couldn't get our> appointment until October. So here we are... 3 months away from our> appointment and I have no idea what to expect or how bad the curve is. I'm> super careful of how I hold and position Ximena because I don't want to make> it worse. (I won't let her use her Bumbo seat because I'm afraid it'll> strain her back and make the curve worse).> > Since I'm so far away from the appointment, I've been having extreme anxiety> and don't know what to expect. Does anyone have any advice or let me know> what I should expect from my first few doctor's visits?>

July 29, 2011

Our daughter was diagnosed at 2. Has been trialed off twice. The last time was

2001. She failed both times. She is 16 (17 in April). She's making more

decisions each appt so my job is about over. She also has lung problems and an

endocrine disorder. She will be a Junior and starts school Monday. She likes

drama and show choir.

Ursula

Mom to Macey (16,CVID)

On Jul 29, 2011, at 7:45 AM, " Molly " <sds44001@...> wrote:

> Good morning, at least in Ohio it's morning.

>

> My name is and my 17 year old son was diagnosed with Hypogam when he

was 6 years old. He recieved IVIG every three weeks until he was about 10 when

we 'trialed' him off, unsuccessfully. He then continued the IVIG again until

March of 2010 when he was again 'trialed' off. This year, he had pre and post

Pnuemo-titers and IGG levels. His pre injection IGG level was about 573, I'm

using memory on this one. His post injection IGG level dropped to 472 and he

mounted an immunity to 9 of 23 Pneumococcals, if that's what it's called. Since

his last IVIG, he has had one pneumonia and one sinus infection both being

treated successfully with one round of antibiotics. Now, his immunologist would

like to initiate IVIG again but I'm against it. So, we decided to wait to

reasses his levels in two months. It's very confusing because his immunologist

initialled diagnosed him with Hypogamm and when he was assessed this year, she

said he would be labeled CVID if he hadn't mounted an immunity to any or less

than 2 of the pneumococcals....confusing....LOL

>

> He wants to enter the military and with this diagnosis, his dreams are forever

squashed.

>

> On a side note, are there any other almost adults with Hypogamm? I think it

would help my son a TON to speak with someone. He's really having a tough time

with this. We thought he had a kidney disease but it appears as though that

isn't the case. If there's an almost adult who would be willing to talk/ text

another almost adult, please let me know...

>

> Thank you for everything!!!

>

July 29, 2011