hello

[Guest guest]

Oh I am definitely in touch with the

school. Just that when it comes to social issues of course they want to avoid

the situation. I have my doctor (behavioral specialist) working with them and

is currently coming up with the plan. It will be soon implemented into the program.

I’m willing to do what it takes but

some things, such as when it comes to the other kids can’t be “handled”

it’s not always seen, further more I wonder if this would make it worse

if I stepped in, would the kids tease him more in saying his “mommy”

helped him. It’s a constant struggle.   I don’t know what else to

do. I feel like I am not getting very far with the behavioral specialist yes we

have plans in the makings but somehow he avoids speaking about my son’s

autism. I do understand he is working on Devin’s “behavioral issues”

because that’s what he does. I called another counselor (well known

working with Autistic children) that’s local yesterday, because I am

concerned about a few things. Which are:

1. How did it get to this point in

thinking nothing was wrong during his progression time?

2. Do we have the right diagnosis? IF we

do (as IM sure we do but why aren’t things in black and white what he

needs etc.? Does that make sense to you?  

3. How can I, me myself and I, measure

where and what my son needs? I believe this is very complicated because the

diagnosis (if correct) he currently has is Mild Aspergers, I don’t know

exactly what he needs or when. I thought the doctors could tell me this was I

wrong? I know that social is a problem, IM currently getting him social skills,

fix table features-what can we do here?

I’m totally confused here and I don’t

know where to turn. The counselor I called yesterday, said she felt

uncomfortable talking because the behavioral specialist was involved. <<<<UGH>>>>

Now there is the school that’s starting

up with issues there. I just don’t know if I want to go through with this

again such as I did before. That took so much of a fight, my time and it’s

all I could think about. We haven’t reached that point with the school

entirely but I do want to avoid it at all cost but at the same time I WILL

FIGHT FOR WHAT MY SON NEEDS! Im just trying to figure out what those needs are

at the moment and it seems like that’s mainly myself, to be a doctor,

mother, lawyer, mediator etc. I do have a three year old and a 20 year old here

in my home too. (20yr old just moved from Australia, he is my step son)

Please help!

Deb’s

From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of lilies@...

Sent: Tuesday, January 30, 2007

8:37 PM

Autism and Aspergers Treatment

Subject: RE:

Hello

-----Original

Message-----

From: Autism and Aspergers Treatment

[mailto:Autism and Aspergers Treatment ]

On Behalf Of Barry Hitchcock

Sent: Tuesday, January 30,

2007 9:04 AM

Autism and Aspergers Treatment

Subject: RE:

Hello

Thanks for the input. I

am “thinking” and you answered a lot of my issues. We (my husband

& I) are talking about we are doing the right thing or not. My son has been

going to a new school since Feb. 2005. There have not been many issues up until

recently. The move here has done wonders for my son, the new school things were

super until recently. I assumed everything was going well and I should

have known better. The other kids in the class by now know him to well and have

found that wasn’t good enough, now he is teased and bullied. Now

I’m trying to figure out how to handle this.

***********Hi Deborah, I feel for you, and I really do understand

that inner conflict of trying to what is best for your son. I do think you

should call the Principal, and tell them what’s going on, and you want it

handled. They can talk to the teachers and staff.

Also 9 is a tough age. Nine was when my son crashed. Nine is when

school work gets more complex, as does the social relationships between kids.

We were frantic trying to do what was best for our son at this age. He did not

attend the last month of school. In fifth grade he went ½ days and it was still

too much. If your son just can’t be in the school, the school has to send

in a tutor. Hopefully he won’t get this down and out,

I wouldn’t want to see that being necessary. .

If we don’t do home school than our option is put him

into a private school. Which we probably couldn’t afford and I

don’t know any here that is appropriate for his needs.

************Start really looking around and visiting schools.

His present school needs to get on the stick and if they can’t meet his

needs, pay for private. This is all emotionally draining. I know. I was so glad

to be rid of the whole school scene. Keep us informed and ask any

questions….Gail A.

--

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[Guest guest]

Hi Betty,

My husband and I are not taking pharmaceutical

treatment for ours either. We have

had it approximately 35 years. I

was really sick with it for a long time but I am doing great with what I am

doing. My husband remains symptom

free, but that often doesn’t mean that you are doing well.

Nikki

Hello everybody I just

recently got told I have hepatitis c.

Due to other health conditions I cannot take any medusa or treatment for it. Does anybody know what the life span is on this

disease?

[Guest guest]

Hi !! Welcome to the group. I don't know anything about RDI.

Missy- SAHM & Angel to Warrior !!

I am who I am because that's who I am, --, 7 Aspergers, LKS, great kid!!

All Kids are gifted, some just open their packages earlier than others-- Carr

http://www.iditarace4autism.com/index.html Race for Autismhttp://www.caringbridge.org/cb/inputSiteName.do?method=search & siteName=michaelfrench Stop by and say hi to my Warrior!!

Hello

Hi,My name is and I am an RDI Consultant in Training. I am curious to know how many of you are familiar with Relationship Development Intervention?Anyhow, I am eager to learn from your posts and to share ideas and strategies. RDI Consultant in Training

[Guest guest]

Hi !! Welcome to the group. I don't know anything about RDI.

Missy- SAHM & Angel to Warrior !!

I am who I am because that's who I am, --, 7 Aspergers, LKS, great kid!!

All Kids are gifted, some just open their packages earlier than others-- Carr

http://www.iditarace4autism.com/index.html Race for Autismhttp://www.caringbridge.org/cb/inputSiteName.do?method=search & siteName=michaelfrench Stop by and say hi to my Warrior!!

Hello

Hi,My name is and I am an RDI Consultant in Training. I am curious to know how many of you are familiar with Relationship Development Intervention?Anyhow, I am eager to learn from your posts and to share ideas and strategies. RDI Consultant in Training

[Guest guest]

I know I owe you a huge email.......been crazy. Are you in this group: birminghamaspergers/

xoxoxoxoxoxo

RE: Hello

Oh I am definitely in touch with the school. Just that when it comes to social issues of course they want to avoid the situation. I have my doctor (behavioral specialist) working with them and is currently coming up with the plan. It will be soon implemented into the program.

I’m willing to do what it takes but some things, such as when it comes to the other kids can’t be “handled” it’s not always seen, further more I wonder if this would make it worse if I stepped in, would the kids tease him more in saying his “mommy” helped him. It’s a constant struggle. I don’t know what else to do. I feel like I am not getting very far with the behavioral specialist yes we have plans in the makings but somehow he avoids speaking about my son’s autism. I do understand he is working on Devin’s “behavioral issues” because that’s what he does. I called another counselor (well known working with Autistic children) that’s local yesterday, because I am concerned about a few things. Which are:

1. How did it get to this point in thinking nothing was wrong during his progression time?

2. Do we have the right diagnosis? IF we do (as IM sure we do but why aren’t things in black and white what he needs etc.? Does that make sense to you?

3. How can I, me myself and I, measure where and what my son needs? I believe this is very complicated because the diagnosis (if correct) he currently has is Mild Aspergers, I don’t know exactly what he needs or when. I thought the doctors could tell me this was I wrong? I know that social is a problem, IM currently getting him social skills, fix table features-what can we do here?

I’m totally confused here and I don’t know where to turn. The counselor I called yesterday, said she felt uncomfortable talking because the behavioral specialist was involved. <<<<UGH>>>>

Now there is the school that’s starting up with issues there. I just don’t know if I want to go through with this again such as I did before. That took so much of a fight, my time and it’s all I could think about. We haven’t reached that point with the school entirely but I do want to avoid it at all cost but at the same time I WILL FIGHT FOR WHAT MY SON NEEDS! Im just trying to figure out what those needs are at the moment and it seems like that’s mainly myself, to be a doctor, mother, lawyer, mediator etc. I do have a three year old and a 20 year old here in my home too. (20yr old just moved from Australia, he is my step son)

Please help!

Deb’s

From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of lilieshughes (DOT) netSent: Tuesday, January 30, 2007 8:37 PMAutism and Aspergers Treatment Subject: RE: Hello

-----Original Message-----From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of Barry HitchcockSent: Tuesday, January 30, 2007 9:04 AMAutism and Aspergers Treatment Subject: RE: Hello

Thanks for the input. I am “thinking” and you answered a lot of my issues. We (my husband & I) are talking about we are doing the right thing or not. My son has been going to a new school since Feb. 2005. There have not been many issues up until recently. The move here has done wonders for my son, the new school things were super until recently. I assumed everything was going well and I should have known better. The other kids in the class by now know him to well and have found that wasn’t good enough, now he is teased and bullied. Now I’m trying to figure out how to handle this.

***********Hi Deborah, I feel for you, and I really do understand that inner conflict of trying to what is best for your son. I do think you should call the Principal, and tell them what’s going on, and you want it handled. They can talk to the teachers and staff.

Also 9 is a tough age. Nine was when my son crashed. Nine is when school work gets more complex, as does the social relationships between kids. We were frantic trying to do what was best for our son at this age. He did not attend the last month of school. In fifth grade he went ½ days and it was still too much. If your son just can’t be in the school, the school has to send in a tutor. Hopefully he won’t get this down and out, I wouldn’t want to see that being necessary. .

If we don’t do home school than our option is put him into a private school. Which we probably couldn’t afford and I don’t know any here that is appropriate for his needs.

************Start really looking around and visiting schools. His present school needs to get on the stick and if they can’t meet his needs, pay for private. This is all emotionally draining. I know. I was so glad to be rid of the whole school scene. Keep us informed and ask any questions….Gail A.

--No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.432 / Virus Database: 268.17.14/657 - Release Date: 1/29/2007 9:04 AM

--No virus found in this outgoing message.Checked by AVG Free Edition.Version: 7.5.432 / Virus Database: 268.17.14/657 - Release Date: 1/29/2007 9:04 AM

--No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.432 / Virus Database: 268.17.15/659 - Release Date: 1/30/2007 9:31 AM

--No virus found in this outgoing message.Checked by AVG Free Edition.Version: 7.5.432 / Virus Database: 268.17.17/661 - Release Date: 1/30/2007 11:30 PM

[Guest guest]

Hi Sharon,

My son is 8 years old.Diagnoised with Autism,he is very low

functioning(non-verbal,not potty trained still in pullups).

He also has been diagnosed with Hypercussion(sp).He has a lot

of Sensory needs.Will not do anything fine motor(eat with a fork,

use a crayon,puzzles etc.)They take him out of his classroom alot

because he crys if it's too noisy.His hears everything too

loud,always has his fingers in his ears.I finally got my school

to put him in a private school,he goes to Center for Discovery,it

is a nice school in upstate New York.The drive is really long

each day an hour on the bus.Next thing I need to do is try

to get my schoolboard to pay for AIT.I'm working with Family

Empowerment to help me do this.If anyone knows of any therepys

school uses to help with hearing sensitivitys please let me know

Thank you

Kathy

In Autism and Aspergers Treatment , " Sharon Schmidt "

<SSch184188@...> wrote:

>

> New member alert

> Please tell us something about you and your family. Welcome all,

this

> is a great list with a great group of people willing to offer

> support. God bless all, Sharon

>

[Guest guest]

I am somewhat familiar with RDI. I tried getting my daughter

involved in RDI about 1 1/2 years ago while living in VA.

Unfortunately the one provider we got in contact with wouldn't see us

until we took the parent classes which at the time were not available

except in Texas & we just couldn't afford the trip, babysitting & the

time off work. I have viewed the DVD & I've read most of the book that

is recommened by The Connections Center(Solving The Relationship Puzzle

or something like that, sorry the name escapes me right now). I did

get another providers name, but could never get her to return my emails

or calls so I assume she was booked. Since we moved to Georgia this

past summer I haven't pursued it. I am still interested, but now I

wonder if it would help my daughter since she is pretty high

functioning at this point.

Wendie

>

> Hi,

>

> My name is and I am an RDI Consultant in Training. I

am

> curious to know how many of you are familiar with Relationship

> Development Intervention?

>

> Anyhow, I am eager to learn from your posts and to share ideas and

> strategies.

>

>

> RDI Consultant in Training

>

[Guest guest]

I am somewhat familiar with RDI. I tried getting my daughter

involved in RDI about 1 1/2 years ago while living in VA.

Unfortunately the one provider we got in contact with wouldn't see us

until we took the parent classes which at the time were not available

except in Texas & we just couldn't afford the trip, babysitting & the

time off work. I have viewed the DVD & I've read most of the book that

is recommened by The Connections Center(Solving The Relationship Puzzle

or something like that, sorry the name escapes me right now). I did

get another providers name, but could never get her to return my emails

or calls so I assume she was booked. Since we moved to Georgia this

past summer I haven't pursued it. I am still interested, but now I

wonder if it would help my daughter since she is pretty high

functioning at this point.

Wendie

>

> Hi,

>

> My name is and I am an RDI Consultant in Training. I

am

> curious to know how many of you are familiar with Relationship

> Development Intervention?

>

> Anyhow, I am eager to learn from your posts and to share ideas and

> strategies.

>

>

> RDI Consultant in Training

>

[Guest guest]

Hi Lee,

>>How do you go about helping these kiddos understand when they do

some-thing like that? He has said his body is telling him to do it and

he cannot stop.<<

Have you tried using social stories? Just bombarding him with words will

confuse him and he will not understand how he is making other people feel.

You have to try and help him develop that sort of empathy (and it will be a

slow process).

Go to Carol Gray's website and maybe buy some of her books. If there are any

autism specialists in your school system (over here we have autism outreach

teachers who go round schools helping both staff and parents), get them to

help you write/draw the story. It is important that it is presented visually

not orally, so that he can take his time over digesting what it says, and

can go back to it as often as he needs.

in England

[Guest guest]

Hi Lee. Have you tried offering a reward instead of a punishment? My AS son only

gets worse if I take things away from him. But if I have something he really

wants..he will work to get it. Perhaps if you bought him a new flashlight and

showed it to him before church and told him he could have it when you got home

if he didn't take anything from the church. Have you tried a social strory?

- Debbie

-------------- Original message ----------------------

From: " Lee " <missolive06@...>

> Good Evening:

>

> I am the mom of two boys, 4 and 7, the oldest with AS. Along with

> the

> AS we also deal with a combined total of 16 food allergies, asthma,

> eczema and cholingeneric (sp?) urticaria. The AS is the most recent

> diagnosis! My AS son is very bright and considered high

> functioning,

> but there are so many questions floating in my mind-one for which I

> would like some advice on now.

>

> My son LOVES flashlights, they are his special interest. We belong

> to

> a great church and they all know my son and his love for lights

> because

> he has been there since he was a toddler. Lots of folks give him

> flash-

> lights because they know he loves them. There lies the problem-he

> has

> come to believe that every light in the church should be his. He

> has

> taken two lights from the church, convinced they should be his.

>

> We are not getting through to him that this is stealing. Has anyone

> had experience with this? He has already lost his dessert for a

> whole

> month.

>

> How do you go about helping these kiddos understand when they do

> some-

> thing like that? He has said his body is telling him to do it and

> he

> cannot stop.

>

> Thank you,

> Lee

>

>

>

> New member alert

> Please tell us something about you and your family. Welcome all,

this

> is a great list with a great group of people willing to offer

> support. God bless all, Sharon

>

[Guest guest]

Hey,

Thank for the welcome! Please see my post with the subject line

Relationship Development Intervention posted by . If

you have any further questions you are welcome to contact me via

phone or e-mail. My e-mail is rdi_autism@... and my phone number

is 478-957-3411. Also, I am giving an introductory presentation to

RDI on March 24th in the Peyton Educational Building at The

Medical Center of Central Georgia. This a free presentation that is

open to parents and professionals in the autism community. If you are

interested in attending please let me know and I will send you

further information.

I look forward to hearing from you!

RDI Consultant in Training

>

> Hi !! Welcome to the group. I don't know anything about RDI.

> Missy- SAHM & Angel to Warrior !!

>

> I am who I am because that's who I am,

> --, 7 Aspergers, LKS, great kid!!

>

> All Kids are gifted, some just open their

> packages earlier than others

> -- Carr

>

> http://www.iditarace4autism.com/index.html Race for Autism

> http://www.caringbridge.org/cb/inputSiteName.do?

method=search & siteName=michaelfrench

> Stop by and say hi to my Warrior!!

> Hello

>

>

> Hi,

>

> My name is and I am an RDI Consultant in Training.

I am

> curious to know how many of you are familiar with Relationship

> Development Intervention?

>

> Anyhow, I am eager to learn from your posts and to share ideas

and

> strategies.

>

>

> RDI Consultant in Training

>

[Guest guest]

Hey,

Thank for the welcome! Please see my post with the subject line

Relationship Development Intervention posted by . If

you have any further questions you are welcome to contact me via

phone or e-mail. My e-mail is rdi_autism@... and my phone number

is 478-957-3411. Also, I am giving an introductory presentation to

RDI on March 24th in the Peyton Educational Building at The

Medical Center of Central Georgia. This a free presentation that is

open to parents and professionals in the autism community. If you are

interested in attending please let me know and I will send you

further information.

I look forward to hearing from you!

RDI Consultant in Training

>

> Hi !! Welcome to the group. I don't know anything about RDI.

> Missy- SAHM & Angel to Warrior !!

>

> I am who I am because that's who I am,

> --, 7 Aspergers, LKS, great kid!!

>

> All Kids are gifted, some just open their

> packages earlier than others

> -- Carr

>

> http://www.iditarace4autism.com/index.html Race for Autism

> http://www.caringbridge.org/cb/inputSiteName.do?

method=search & siteName=michaelfrench

> Stop by and say hi to my Warrior!!

> Hello

>

>

> Hi,

>

> My name is and I am an RDI Consultant in Training.

I am

> curious to know how many of you are familiar with Relationship

> Development Intervention?

>

> Anyhow, I am eager to learn from your posts and to share ideas

and

> strategies.

>

>

> RDI Consultant in Training

>

[Guest guest]

Dear Debbie,

It's been a long day for me, and I'm too tired to write anything. I do want to send you a big hug and a welcome. You'll get lots of understanding and love on this list.

Your son has a treasure in his mother.

Love,

Sun~Rose (aka Francine)

In a message dated 3/14/2007 10:37:29 P.M. Eastern Standard Time, sunflower9200@... writes:

My name is Debbie and I have a 7 yr old son who may have aspergers. We are in the process of getting our son diagnosed. All the teachers that work with him say that he reminds them of a child with aspergers because he has many of the tendencies that are listed for this disorder. We've had a hard time with him since he was 2 yrs old. I thought he was just strong willed and difficult. When we entered him into pre-school at 4 yrs old, he cried often and had temper tantrums, wouldn't participate in singing and games, didn't want to get anything on his hands (like finger paint, etc.), tags on clothes bothered him and had to be cut out, changing routines upset him badly, wasn't interested in learning or writing his name, wouldn't let me read to him, loud noises bothered him (like flushing the commode and when the other kids got loud in the classroom), etc. Those are just some of the things that I can think of right now. As time went on that year, he got better but never quite like the other children. He made a friend or two eventually. I became good friends with one of the other children's mom and he bonded with that little boy, finally. During recess time, he played by himself mostly though. Kindergarten was a rough start for him too. Changing to a new school, new teacher, new classmates, etc. The first part was really rocky with the principal calling a few times. She was rude and really mean about it. I tried to explain to her that pre-school thought he had sensory problems and what they suggested to do with him. She didn't listen and said that they did things differently than what her school did. I could tell that she blamed our parenting too. She was not compassionate at all! She even has children, and one is only a year older than my son! She made our son go home half day. We went along with it for awhile but then thought about the "No Child Left Behind Act" so I set up another meeting. We told her that we felt that he needed to be in school all day. Surprisingly, she was in a good mood and didn't give us any problems and let him start going all day again. He started doing better then, he still had his days of course but nothing like before. The rest of the school went pretty well AFTER he bonded with the staff that he had to deal with on a daily basis. Then my problems started all over again when he started 1st grade. He was in the same school, but a different room, different teacher, and new principal. So mine and his world was turned upside again. He had to readjust again. The new principal and teacher didn't understand about him yet. It was chaos again with many calls on his behavior. With my permission, they called a behavioral specialist in to observe him. She gave the teachers a modification plan to use with him and suggested he go to a psychologist and get evaluated, because there was something more to him than just being a misbehaved child. We are getting close to the end of the school year now, and we still haven't got him diagnosed. We took him in December for the initial interview and paperwork. I've been in contact with them two other times but he is still on the waiting list. I hope to get things going soon because I really need answers. I have shed so many tears over him!I'm wondering what some of you think about what I've shared with you about my son. Do any of you think he's aspergers too? I'm glad to have found this group because I've needed someone to talk to about this for a long time, but didn't know where to go. I attended a seminar recently with the school about autism in general. I found it really interesting. Anything that anyone can share with me is greatly appreciated. Thanks for letting me join your group! I'm looking forward to getting to know all of you. Debbie

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

Hi Debbie,

>>I'm wondering what some of you think about what I've shared with you

about my son. Do any of you think he's aspergers too?<<

From what you have said he sounds like a classic case of ASD to me. Huge

problems with change, social difficulties, sensory sensitivities are all

part of the mix.

in England

[Guest guest]

Your son sounds like mine and he is classic Aspergers. We have made huge progress with the help of the school, dietary changes and sensory integration therapy. I definately would push for testing both educationally and medically! That way you can get some help.

We were able to have a behavioral therapist come into the home to help us find ways to adjust our parenting to fit our son's needs. She also helped us do social stories and excercises so that our son interacted better with his siblings. Good luck!

ljAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

I am just curious . is possible to give more frequent smaller meals ?

Please understand I am not challenging . I Know NOTHING about NG tubes.

But we have two moms " new moms' whose children are in a similar

position with the ng tube and the reflux and meds.. I was jut curious if

they ever think about smaller meals but more frequent? Or is there a

whole digestive issue here I am not catching on to.

Steph

" We all want progress, but if you're on the wrong road, progress means

doing an about-turn and walking back to the right road; in that case,

the man who turns back soonest is the most progressive. "

C.S.

hello

Hi there,

I have joined this list to learn as much as possible about Downs

Syndrome.

Our baby was diagnosed with DS when I was 11 weeks pregnant so we

had plenty of time to prepare, he arrived by CS on 13th January 2007

and although he was 38 weeks gestation (all but 2 days) he needed

Neonatal care for a few weeks due to breathing difficulties, low blood

sugar,

and problems feeding. He is beautiful and a real fighter, despite a lot

of problems

(ASD and VSD and immature lungs, also pulmonary hypertension)

He has been home with us for a few weeks now and we are so pleased with

his

progress considering he was so poorly at birth. Our biggest worry at the

moment is his feeding. He is nil by mouth due to being assessed as

having

an unsafe swallow, and is being through an NG tube by myself with SMA

Gold.

He has very bad reflux and is being treated for this with Gaviscon

Infant x 6 per

day, and also 2mg x 4 daily of Domperidone. At the moment he only

tolerates

90ml to 100ml of SMA x 5 or 6 feeds per day, any more and he retches and

gags. He is also supposed to be having 0.6ml of ABIDEC but I have

stopped

giving it because it seems to make his reflux worse. He sleeps on a

slant

because of the reflux and that helps a little, I use sheets under his

mattress to achieve this but am trying to get one of those sloping

pillows

to prop his mattress up at the correct angle.

Any advise or tips would be very welcome, especially on how to get him

feeding better, and how to encourage a better swallow. He is going to be

referred to a community speach and language therapist.

Best wishes

Kath

http://www.brettjac <http://www.brettjack.co.uk> k.co.uk

[Guest guest]

Welcome!

I have really enjoyed your website, Brett is adorable, looks like he has a great

big brother!

You will find lots of info from the parents on this list. So post away, and

please keep us updated on Brett's progress!

Sharon H.

Mom to , (15, DS) and , (11)

South Carolina

" Be kinder than necessary, for everyone you meet is fighting some kind of

battle. "

hello

Hi there,

I have joined this list to learn as much as possible about Downs Syndrome.

Our baby was diagnosed with DS when I was 11 weeks pregnant so we

had plenty of time to prepare, he arrived by CS on 13th January 2007

and although he was 38 weeks gestation (all but 2 days) he needed

Neonatal care for a few weeks due to breathing difficulties, low blood sugar,

and problems feeding. He is beautiful and a real fighter, despite a lot of

problems

(ASD and VSD and immature lungs, also pulmonary hypertension)

He has been home with us for a few weeks now and we are so pleased with his

progress considering he was so poorly at birth. Our biggest worry at the

moment is his feeding. He is nil by mouth due to being assessed as having

an unsafe swallow, and is being through an NG tube by myself with SMA Gold.

He has very bad reflux and is being treated for this with Gaviscon Infant x 6

per

day, and also 2mg x 4 daily of Domperidone. At the moment he only tolerates

90ml to 100ml of SMA x 5 or 6 feeds per day, any more and he retches and

gags. He is also supposed to be having 0.6ml of ABIDEC but I have stopped

giving it because it seems to make his reflux worse. He sleeps on a slant

because of the reflux and that helps a little, I use sheets under his

mattress to achieve this but am trying to get one of those sloping pillows

to prop his mattress up at the correct angle.

Any advise or tips would be very welcome, especially on how to get him

feeding better, and how to encourage a better swallow. He is going to be

referred to a community speach and language therapist.

Best wishes

Kath

http://www.brettjack.co.uk

[Guest guest]

Hi , Yes, he has all those characteristics! Thanks for your input. It's good to get opinions from those who know what I'm talking about. So many people do not understand. Debbie Rowell <nancy@...> wrote: Hi Debbie,From what you have said he sounds like a classic case of ASD to me. Huge problems with change, social difficulties, sensory sensitivities are all part of the mix. in England

Bored stiff? Loosen up...Download and play hundreds of games for free on Games.

[Guest guest]

No shakes here yet...lot of other stuff tho take care, Edglendajohn25@... wrote: Good afternoon everyone. I am writing to see if any body else shakes because progessing liver diasease. I just keep waiting for the next things to happen. Love you all, Glenda AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

No need to miss a message. Get email on-the-go with for Mobile. Get started.

[Guest guest]

Oh Yeah Glenda, I get the shakes so bad sometimes I have to wear a bib when I eat otherwise I get food all over. My handwriting, which was one of my little vanities , now is almost illegible even to me. I stay away from chat rooms cause I can't type fast enough any more. Sometimes it gets better for a while but it seems to last longer now. I knew what it's called but I'm in a very foggy place right now & can't remember. Hugs, SuZie & Sir SpYkeglendajohn25@... wrote: Good afternoon everyone. I am writing to see if any body else shakes because progessing liver diasease. I just keep waiting for the next things to happen. Love you all, Glenda AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

Next time I'm coming back as a cat

[Guest guest]

BePo <arkielady501@...> wrote: My name is Betty . I am 60 year old

widow with disabilities. I love all things natural and love natural perfume.

I hope to learn a lot from this group and make some friends. I am a total newbie

to making perfume so won't have much to offer for awhile I'm afraid.

Thanks for letting me join. Have a great day. Betty

Hi Betty

Welcome and enjoy all there is to offer. Plenty in files and a load in the

messages...

best

Janita

Ascent http://www.hayspace.co.uk

---------------------------------

Now you can scan emails quickly with a reading pane. Get the new .

[Guest guest]

Dear Wayne,

Welcome to the group and congratulations on your

successful fight with HIV and PML and Hepatitis. You

certainly have a lot to deal with. I hope you find the

support and anything else you might need here.

It IS very difficult to deal with the people you love

most not accepting your reality. I have several

illnesses that cause extreme fatigue. Mom thinks if I

would just push a little harder I could do it. I

could, but I'd be in bed for a number of days later.

Having a partner who cannot accept what's happening is

a whole other kind of pain. My husband of 28 years was

convinced that I was not ill, I was just using a

headache or a pulled muscle as an excuse to not do

what I didn't want to do. He taught my son that I was

faking (my son knows better now from visiting me in

Missouri). My -ex finally lost control and got

physically violent with me after years of verbal and

emotional abuse. Not one of my friends would let me

sleep on their couch that night. I left a 28 year old

marriage as soon as I got a Social Security check.

Would your partner go to a MD appointment with you? If

you explained your situation to your MD's and brought

your partner in the next visit so that they could

explain things. Perhaps seeing through their eyes and

years of experience would make a difference.

I have some problems that cause me to speak with the

wrong words or the wrong word order. You've got to

have a sense of humor to walk this road ; )

I hope you enjoy and benefit from the wonderful people

here.

; )

Willow

--- Wayne Nettles <quartertrix@...> wrote:

My Challenges:

Scoliosis, Radiation Injury to my Brain, Ministrokes, Memory Problems, Cluster

Migraine Headaches, Osteoporosis with Multiple Broken Bones, Fibromyalgia,

Chronic Pain and Fatigue, Depression, PTSD, Bipolar Type II Rapid Cycling,

Anxiety, Chronic Insomnia, Sleep Apnea, Spinal Stenosis, TMJ injury, Thyroid

Cancer X3, Skin Cancer, Loss of Salivary Glands due to Thyroid Radiation Tx,

Teeth Destruction with Loss of Salivary Glands, Obesity, Restless Leg Syndrome,

Alpha Wave Intrusion on Delta Sleep plus many other Sleep Anomalies,

vonWillebrand's disease (genetic bleeding disorder), Hypertension, High

Cholesterol and Triglycerides, Chronic Allergies, Asthma, Peripheral Neuropathy,

Chronic Gastritis, GERD, Adult ADD, Overactive Bladder, Chronic Nosebleeds

[Guest guest]

Hi Coni,

Isn't that reflexology tape wonderful! Sounds like you have had a great

workout.

I am so proud of my AM jump rope club. They are doing great! So far that is my

workout, turning rope for an hour for K - 6th graders as I'm helping them learn

their double dutch tricks! My arms should be rock solid by now. LOL I got a

wild hair the other day and did a really hard workout as I was driving I was

squeezing my whole body in a really hard flex (I was still a safe driver on the

country roads I was driving on). It has taken almost a week to recover from the

sore muscles I gave myself!

Today I started the breaths and flexing as I'm sitting at the computer again.

Muscles still a bit sore, but okay to workout again.

What exercises are you doing on the ball?

Have a great day,

Karma

Hello

I hope everyone is having a great day! I did my ball, yoga , and

breathing with reflexology. I was a little queasy this AM but it is

amazing what a little fennel tea and Rashelle's Reflexology tape will

do, I feel 100% better. Coni

[Guest guest]

Glad to hear you're feeling better Coni.

Molly : O )

>

> I hope everyone is having a great day! I did my ball, yoga , and

> breathing with reflexology. I was a little queasy this AM but it is

> amazing what a little fennel tea and Rashelle's Reflexology tape will

> do, I feel 100% better. Coni

>

[Guest guest]

Hi Coni,

I'm so glad that you feel better and that you are doing all of those wonderful

things to keep you in shape.

Love always,

Pat

Hello

I hope everyone is having a great day! I did my ball, yoga , and

breathing with reflexology. I was a little queasy this AM but it is

amazing what a little fennel tea and Rashelle's Reflexology tape will

do, I feel 100% better. Coni

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