New member

[Guest guest]

Donna,

Just FYI, I had a gastric band removed prior to myotomy since my

surgeon was adamant that was the problem, not achalasia. I had mild

improvement then major decline which ultimately led to myotomy (with

another surgeon) which was completely successful. I firmly believe

that both issues were a big problem and both had to be addressed and

whether it was primary or secondary was irrelevant as the outcome

was the same.

Liz

southern ontario

> >

> >> ... I have a gastric band for weight loss. ...

> >

> > There are conflicting studies about gastric banding and

achalasia. It

> > is accepted that there may be a risk that gastric banding can

lead to

> > achalasia like symptoms. It is also possible that the gastric

banding

> > in your case is just a coincidence. For more information on the

> > connection see the fallowing articles.

> >

> > Pseudo-achalasia following laparoscopically placed adjustable

gastric

> > banding.

> > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=11501366 & dopt=Abstract

> > <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=11501366 & dopt=Abstract>

> >

> > Preoperative esophageal manometry and outcome of laparoscopic

> > adjustable silicone gastric banding

> > http://www.springerlink.com/content/y86502554m2561x2/

> > <http://www.springerlink.com/content/y86502554m2561x2/>

> >

> > If the gastric banding caused the achalasia it may be Pseudo

> > (secondary) achalasia. If it was not caused by the banding it

may be

> > primary achalasia.

> > The good news is that if this is not primary achalasia there is

some

> > evidence from experiments in which cats were banded that the

problem

> > may go away and peristalsis may return after the band is

removed. See

> > the fallowing study.

> >

> > Are the motility abnormalities of achalasia reversible? An

> > experimental outflow obstruction in the feline model.

> > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=10330937 & dopt=Abstract

> > <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=10330937 & dopt=Abstract>

> >

> > Also, another way to reduce stress on the esophagus and continue

to

> > promote weight loss is to add a Roux-en-Y gastric bypass. See:

> >

> > Laparoscopic Roux-en-Y Gastric Bypass, but Not Rebanding,

> > Should Be Proposed as Rescue Procedure for Patients With Failed

> > Laparoscopic Gastric Banding

> > http://www.pubmedcentral.nih.gov/articlerender.fcgi?

artid=1356164

> > <http://www.pubmedcentral.nih.gov/articlerender.fcgi?

artid=1356164>

> >

> > You may want to bring these articles with you to your doctors

and

> > discuss them. Most doctors have never treated achalasia. Be sure

you

> > have a doctor that has treated many people with achalasia. It

seems

> > simple but there is a big learning curve to being skilled with

it. In

> > your case you should also find one that is skilled with the

obese.

> > Some surgeons that do surgery for achalasia will not do it on

the

> > obese. A surgeon that does gastric bypass and treats achalasia

would

> > have the skill to work on the obese with achalasia.

> >

> > notan

> >

> >

> >

>

[Guest guest]

Thanks Liz,

I have seen myotomy mentioned several times in this group as well as a

proceedure using botox. Could you explain a little more, and tell me

what your recovery time was.

Donna

lizzie2542 wrote:

Donna,

Just FYI, I had a gastric band removed prior to myotomy since my

surgeon was adamant that was the problem, not achalasia. I had mild

improvement then major decline which ultimately led to myotomy (with

another surgeon) which was completely successful. I firmly believe

that both issues were a big problem and both had to be addressed and

whether it was primary or secondary was irrelevant as the outcome

was the same.

Liz

southern ontario

[Guest guest]

If you look through some of the archives on this board you will see

some very good summaries on experiences with the myotomy and also

discussion on botox. Most will discourage the use of botox

particularly if you will have surgery at some point anyhow. As for

my recovery, it was long because my procedure was not typical so my

case won't tell you what most people experience. I had an open

procedure and had some complications so my recovery was 2 weeks in

hospital and 8 weeks off work. Most people have it done

laprascopically, 1 night in hospital and about 2 weeks off work I

believe. Again, I am not the expert on this but there are lots of

posts about it. All I know is it was completely worth it and I

would do it again in a heartbeat even with the complications. My

complcations came from waiting too long. Ended up with a very bad

case of aspiration pneumonia.

Liz

> >

> > Donna,

> > Just FYI, I had a gastric band removed prior to myotomy since my

> > surgeon was adamant that was the problem, not achalasia. I had

mild

> > improvement then major decline which ultimately led to myotomy

(with

> > another surgeon) which was completely successful. I firmly

believe

> > that both issues were a big problem and both had to be addressed

and

> > whether it was primary or secondary was irrelevant as the outcome

> > was the same.

> > Liz

> > southern ontario

> >

>

[Guest guest]

Liz wrote:

> ... My complcations came from waiting too long. ...

That could also be why secondary or primary was, as you put it,

" irrelevant. " In animal studies, other than in cats, the amount of time

before removing the banding was important in whether peristalsis

returned or not.

notan

[Guest guest]

Liz wrote:

> ... My complcations came from waiting too long. ...

That could also be why secondary or primary was, as you put it,

" irrelevant. " In animal studies, other than in cats, the amount of time

before removing the banding was important in whether peristalsis

returned or not.

notan

[Guest guest]

Liz wrote:

> ... My complcations came from waiting too long. ...

That could also be why secondary or primary was, as you put it,

" irrelevant. " In animal studies, other than in cats, the amount of time

before removing the banding was important in whether peristalsis

returned or not.

notan

[Guest guest]

Liz wrote:

> ... My complcations came from waiting too long. ...

That could also be why secondary or primary was, as you put it,

" irrelevant. " In animal studies, other than in cats, the amount of time

before removing the banding was important in whether peristalsis

returned or not.

notan

[Guest guest]

Hi !

Just had to comment on the " winner circle " photo. I

love it! What a cutie. My little guy Freddie loves

medals and pretty much every morning will ask to wear

one of his medals we hung on a wall.

Can't wait to hear all your advice and experience!!

Thanks for sharing the photo!!

nna

Mommy to Freddie 5 yrs

Full Inclusion Kindy

Started T-Ball!!

--- emily reyna <matthewsmom97@...> wrote:

> Hi there! I'd like to introduce myself. My name is

> and I am the proud mom to 4 great kids. Their

> ages are 32, 30, 21, and last but not least

> who is 9 yrs. and has Down's syndrome. I am so

> excited about this site. I've seen others for other

> syndromes and was wondering why there was not one

> for my babes and others. I stumbled upon this quite

> accidently. I am so glad I did. Well, I hope to

> build lasting friendships and share,share, share

> information that might underwise be overlooked by

> others. We are all still learning and through this

> venture we will be better equipped to assist our

> children in all endeavours. Sharing with you my

> son, , of course, at The Winners Circle! We

> are all winners!!!

>

> ---------------------------------

> Now that's room service! Choose from over 150,000

> hotels

> in 45,000 destinations on Travel to find your

fit.

________________________________________________________________________________\

____

Now that's room service! Choose from over 150,000 hotels

in 45,000 destinations on Travel to find your fit.

http://farechase./promo-generic-14795097

[Guest guest]

Hi and WELCOME to the list!!

We are very happy that you found us too. Since you said it was an accident, I am curious as to how and where you found us?

is a very handsome young man! What was he participating in to get the medal?

I have 7 kids and three grandsons. My youngest daughter, 6, is our child with DS.

I did take some pictures of her all dressed up for her spring concert that I have meaning to get on here, I think you may have inspired me to get moving on it. :0)

Carol in IL AIM doihavtasay1Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

Down Syndrome Treatment/

Listen to oldest dd's music http://www.myspace.com/vennamusic

new member

Hi there! I'd like to introduce myself. My name is and I am the proud mom to 4 great kids. Their ages are 32, 30, 21, and last but not least who is 9 yrs. and has Down's syndrome. I am so excited about this site. I've seen others for other syndromes and was wondering why there was not one for my babes and others. I stumbled upon this quite accidently. I am so glad I did. Well, I hope to build lasting friendships and share,share, share information that might underwise be overlooked by others. We are all still learning and through this venture we will be better equipped to assist our children in all endeavours. Sharing with you my son, , of course, at The Winners Circle! We are all winners!!!

Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit.

Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit.

[Guest guest]

Hi Carol from IL. My eldest daughter Liz purchased this compaq for me Christmas. I am from the paper generation as I call it so I was and still am learning my way around the internet. I'd lie to you if I told you how I stumbled upon this site. I honestly don't know, I was just clicking different links one early morn and whoa there it was!!! A site for sore eyes. I had registered to be a member of Our Kids not realizing that there had only been 2 children, well, one adult with d/s and their parent or caregive never spoke about them only the other children. I may have found it from their links. won playing a a variety of games and coming in first place. He is still pretty much nonverbal intelligibly speaking. He developed his own jargon when he was about 18 mos. old. When he was 17mos. old he had a pretty good vocabulary. Then one day it was gone. Now that he is older he HEARS himself and

others so I believe he may be shy to speak at times. But get him going and he will hold a conversation with you about everything! I've requested he have more oral motor activities to improve articulation. He is now receiving private speech at home 2x's a week and I tell her the same thing. If he really wants something though I make him tell me. It comes out sort of like this, I wantt some orannge juic! He will place more emphasis on the consonants. Off and on he will sign. I stress to him everyday he needs to speak, speak, speak. As it is society has a problem with his looks and it is worse when he cannot pronounce words clearly. He is very active, loves ninetindo, playstation 1 and 2, and has reached higher levels in those games than my grandchildren! Quite the performer and stubborn to boot! Can't wait to see your litttle one. Great name !, thats my daughters name. Hope

to hear from you soon. Thank you.Carol in IL <ps1272000@...> wrote: Hi and WELCOME to the list!! We are very happy that you found us too. Since you said it was an accident, I am curious as to how and where you found us? is a very handsome young man! What was he participating in to get the medal? I have 7 kids and three grandsons. My

youngest daughter, 6, is our child with DS. I did take some pictures of her all dressed up for her spring concert that I have meaning to get on here, I think you may have inspired me to get moving on it. :0) Carol in IL AIM doihavtasay1Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me. Join our Down Syndrome information group - Down Syndrome Treatment/ Listen to oldest dd's music http://www.myspace.com/vennamusic new member Hi there! I'd like to introduce myself. My name is and

I am the proud mom to 4 great kids. Their ages are 32, 30, 21, and last but not least who is 9 yrs. and has Down's syndrome. I am so excited about this site. I've seen others for other syndromes and was wondering why there was not one for my babes and others. I stumbled upon this quite accidently. I am so glad I did. Well, I hope to build lasting friendships and share,share, share information that might underwise be overlooked by others. We are all still learning and through this venture we will be better equipped to assist our children in all endeavours. Sharing with you my son, , of course, at The Winners Circle! We are all winners!!! Now that's room service! Choose from over 150,000 hotels in 45,000

destinations on Travel to find your fit. Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit.

8:00? 8:25? 8:40? Find a flick in no time with the Search movie showtime shortcut.

[Guest guest]

Hi there! Glad to be on board. It already feels like home. I shared a bit with Carol from IL earlier. Its wonderful your son plays T-ball. How great is that! When did Freddie begin to speak? Is it intelligible? I ask due to my Matt's speaking is not very good. I've attended meetings where some of our kids speak great, and others not at all. That is my greatest fear. Its imperative our kids master speech so they may beable to TELL if something happened to them that was not right. As for those medals, I had to put Matt's medal in a frame with his pic. If I didn't he'd sleep with it! He also won 2nd place at school for their Adapted Health Fitness photo contest. I tried to attach that but it did not let me. My daughter said since it is in the newspaper I may not beable to share it with others. I don't get it because I have it in a file. Give me some time

though I'll figure it out. I've already learned quite a bit since I joined. I purchased a few of the Rocknlearn videos and Matt loves it. He loves most music, so this is great for him. I could open a small store with all the leapster stuff and leap frog cds,dvds, and such. It breaks my heart for Emilio and the turmoil his family is going thru. I've gotten involved with that also. Anyhow Thank you for your welcoming. Hope to hear from you soon.Freddies Mommy <freddie5smommy@...> wrote: Hi !Just had to comment on the "winner circle" photo. Ilove it! What a cutie. My little guy Freddie lovesmedals and pretty much every morning will ask to wearone of his medals we hung on a wall.Can't wait to hear all your advice and experience!!Thanks for sharing the photo!!nnaMommy to Freddie 5 yrsFull Inclusion KindyStarted T-Ball!!--- emily reyna <matthewsmom97 > wrote:> Hi there! I'd like to introduce myself. My name is> and I am the proud mom to 4 great kids. Their> ages are 32, 30, 21, and last but not least > who is 9 yrs. and has Down's syndrome. I am so> excited about this site. I've seen others for other> syndromes and was wondering why there was not one> for my babes and others. I stumbled upon

this quite> accidently. I am so glad I did. Well, I hope to> build lasting friendships and share,share, share> information that might underwise be overlooked by> others. We are all still learning and through this> venture we will be better equipped to assist our> children in all endeavours. Sharing with you my> son, , of course, at The Winners Circle! We> are all winners!!!> > ---------------------------------> Now that's room service! Choose from over 150,000> hotels > in 45,000 destinations on Travel to find yourfit.__________________________________________________________Now that's room service! Choose from over 150,000 hotelsin 45,000 destinations on Travel to find your fit.http://farechase./promo-generic-14795097

The fish are biting.

Get more visitors on your site using Search Marketing.

[Guest guest]

beautiful photo! See what's free at AOL.com.

[Guest guest]

resending as the two pics were too large....

Carol in IL AIM doihavtasay1Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

Down Syndrome Treatment/

Listen to oldest dd's music http://www.myspace.com/vennamusic

----- Forwarded Message ----From: Carol in IL <ps1272000@...>Down Syndrome Treatment Sent: Thursday, April 12, 2007 4:57:47 PMSubject: Re: new member

Welcome to the INTERNET too !!! I want to ask how old you are, but I shall refrain. :-)

I am beginning to wonder if people with DS don't all have speak the same language?

met and older girl out at the store with DS and the two of them had a short conversation which only they understood. Same with her little girl friend, but we thought that happened because they spend to much time together. :-) If only the rest of use could 'crack the code'.

doesn't articulate all that well either, and we use a lot of sign. She tends to leave off endings!! We were singing an animal song and she wanted to sing 'frog' and oh my..... all I can say is thank goodness for ASL! She was loosing her patience with me. I know you hard work with is going to pay off!!

They used to make a Pokemon game for one of the older systems that followed voice commands. ' 1:1 was telling me about an older Reader Rabbit program she had where the kids read the book and the puter played it back, then read the text. I was going to do searching for that. It's so old, it won't work on the new puters. She even had the tech at school try it.

Have you tried the Wii yet? I was thinkig of getting one just because of all the physcial things it makes you do. :-) I would think it would be great for the kids and very motivating to keep with it. Do you think s skill in the video games has helped him in any other areas? Eye hand would have to improve with game playing? Visual tracking? multi tasking?

Attached are a couple of pictures of my from her Spring Concert at school.

Carol in IL AIM doihavtasay1Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

Down Syndrome Treatment/

Listen to oldest dd's music http://www.myspace.com/vennamusic

[DownSyndromeInfoEx change] new member

Hi there! I'd like to introduce myself. My name is and I am the proud mom to 4 great kids. Their ages are 32, 30, 21, and last but not least who is 9 yrs. and has Down's syndrome. I am so excited about this site. I've seen others for other syndromes and was wondering why there was not one for my babes and others. I stumbled upon this quite accidently. I am so glad I did. Well, I hope to build lasting friendships and share,share, share information that might underwise be overlooked by others. We are all still learning and through this venture we will be better equipped to assist our children in all endeavours. Sharing with you my son, , of course, at The Winners Circle! We are all winners!!!

Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit.

Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit.

8:00? 8:25? 8:40? Find a flick in no timewith the Search movie showtime shortcut.

Sucker-punch spam with award-winning protection.Try the free Beta.

Don't pick lemons.

See all the new 2007 cars at Autos.

[Guest guest]

Hi -(great name, btw..I have a daughter named

My son, Danny, who has Ds, will be 9 in July….i have to go back

through my emails and find your original message so I can look at the pictures

of , but I wanted to welcome you at least. When was ’s birthday?

Danny is SO excited about his birthday coming up…..he talks

about it a lot, and today I wrote him a story about it for his reading practice…he

was so funny (“my BIRBAYYY!!!”)

Oh well,,back to reading emails…I don’t know how it happened,

but all of a sudden, I had over 1200 unread emails, so I am trying to skim and

catch up;(

KathyR

From:

Down Syndrome Treatment

[mailto:Down Syndrome Treatment ] On Behalf Of emily

reyna

Sent: Wednesday, April 11, 2007 11:20 PM

Down Syndrome Treatment

Subject: Re: new member

Hi Carol from IL. My eldest daughter Liz purchased this compaq for me

Christmas. I am from the paper generation as I call it so I was and still

am learning my way around the internet. I'd lie to you if I told you how

I stumbled upon this site. I honestly don't know, I was just clicking

different links one early morn and whoa there it was!!! A site for sore

eyes. I had registered to be a member of Our Kids not realizing that

there had only been 2 children, well, one adult with d/s and their parent or

caregive never spoke about them only the other children. I may have found

it from their links. won playing a a variety of games and coming

in first place. He is still pretty much nonverbal intelligibly speaking.

He developed his own jargon when he was about 18 mos. old. When he was

17mos. old he had a pretty good vocabulary. Then one day it was

gone. Now that he is older he HEARS himself and others so I believe he

may be shy to speak at times. But get him going and he will hold a

conversation with you about everything! I've requested he have more oral

motor activities to improve articulation. He is now receiving private

speech at home 2x's a week and I tell her the same thing. If he really

wants something though I make him tell me. It comes out sort of like

this, I wantt some orannge juic! He will place more emphasis on the

consonants. Off and on he will sign. I stress to him everyday he

needs to speak, speak, speak. As it is society has a problem with his

looks and it is worse when he cannot pronounce words clearly. He is

very active, loves ninetindo, playstation 1 and 2, and has reached higher

levels in those games than my grandchildren! Quite the performer and

stubborn to boot! Can't wait to see your litttle one. Great name

!, thats my daughters name. Hope to hear from you soon.

Thank you.

Carol in IL <ps1272000@...> wrote:

Hi

and WELCOME to the list!!

We

are very happy that you found us too. Since you said it was an accident, I am

curious as to how and where you found us?

is a very handsome young man! What was he participating in to get the medal?

I

have 7 kids and three grandsons. My youngest daughter, 6, is our

child with DS.

I

did take some pictures of her all dressed up for her spring concert that I

have meaning to get on here, I think you may have inspired me to get

moving on it. :0)

Carol in IL AIM doihavtasay1

Mom to seven including

, 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.

My problem is not how I look. It's how you see me.

Join

our Down Syndrome information group -

Down Syndrome Treatment/

Listen

to oldest dd's music http://www.myspace.com/vennamusic

new member

Hi there! I'd like to introduce myself. My name is

and I am the proud mom to 4 great kids. Their ages are 32, 30, 21,

and last but not least who is 9 yrs. and has Down's syndrome. I

am so excited about this site. I've seen others for other syndromes and

was wondering why there was not one for my babes and others. I stumbled

upon this quite accidently. I am so glad I did. Well, I hope to

build lasting friendships and share,share, share information that might

underwise be overlooked by others. We are all still learning and through

this venture we will be better equipped to assist our children in all

endeavours. Sharing with you my son, , of course, at The

Winners Circle! We are all winners!!!

[Guest guest]

Hi and welcome, Pat! Our son, Jed, who is 15 years now, had a complete A/V canal defect and his repair at 9 months was very successful...no subsequent surgeries!!!! Dr. Ochsner did it at Ochsner’s in New Orleans. I hope and pray the same for Neil, too. BTW, congratulations on Neil’s birth, as well.!!! Beverly [’s wife and mom to (16y), Jed (15y), and nah (14y)--all three are adopted and have Ds] p.s. Where do you live?

On 4/13/07 8:44 AM, " houseoftroutt " <troutthouse@...> wrote:

Good Morning!

I just joined this group. I found it linked to one of my other groups.

My name is Pat. I have 4 kids, 18,15,10 and 5 months old. My baby

Neil has ds. He has an AVcanal heart defect. We are waiting to hear

when his surgery will be.

In spite of that, he is doing quite well. The pt comes every two

weeks. He has fallen in the " normal " range when they do the tests. He

just started laughing! Especially at my husband and daughter! He's

also learning raspberries. He should have that perfected soon.

I'm hoping to learn as much as I can. I have read the only book our

library has on ds. My son is in the Early On program in Michigan.

They have one book...the same as the library.

Neil just woke up...gotta go!

Thanks,

Pat T

[Guest guest]

Welcome to the group Pat!! )

I saw your question regarding recovery time on ds heart and wanted to respond while here-

My daughter has AV canal and TOF and we were told one week, but ended up there for 2 full weeks.

My advice is plan for the best, but take into account that you may end up there longer.

The other issue you may want to consider is the immune system is going to be 'down' for about 4-6 weeks post op and you will want to limit Neil's exposure to other people and their germs.

So if I were you, I would plan that party a safe distance from the surgery just to reduce over all stress. :-)

Unless you have lots of helpers who can take over for you if need be.

Carol in IL AIM doihavtasay1Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

Down Syndrome Treatment/

Listen to oldest dd's music http://www.myspace.com/vennamusic

New member

Good Morning!I just joined this group. I found it linked to one of my other groups.My name is Pat. I have 4 kids, 18,15,10 and 5 months old. My baby Neil has ds. He has an AVcanal heart defect. We are waiting to hear when his surgery will be.In spite of that, he is doing quite well. The pt comes every two weeks. He has fallen in the "normal" range when they do the tests. He just started laughing! Especially at my husband and daughter! He's also learning raspberries. He should have that perfected soon.I'm hoping to learn as much as I can. I have read the only book our library has on ds. My son is in the Early On program in Michigan. They have one book...the same as the library. Neil just woke up...gotta go!Thanks,Pat T

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.

[Guest guest]

Hi Pat-

Welcome to the listserv;-) My name is Kathy, and my son Danny,

who has Ds, will be 9 at the end of July. He also had an AV canal defect, and

the 8th anniversary of his repair is coming up soon. He is a very

healthy, active kid with a great sense of humor. Danny is the youngest of my

7 kids…(the oldest is 24yrs).

I just wanted to mention that your library should be able to get

you books on interlibrary loan for free. Do you have a Ds support group where

you live? If so, they might have a library for parents, too. (in fact, if you

are in the lower part of Michigan, you are welcome to be a part of our local support

group and check books out from our library. We are in the Michiana area.

Here is the webpage for our support group ,,,

http://www.michianadownsyndrome.org

even if you are not close enough to be a member, you can click on “library’

to look at the books/materials we have in our library to get an idea for books

to ask your library to get for you

kathyR.

From: Down Syndrome Treatment

[mailto:Down Syndrome Treatment ] On Behalf Of houseoftroutt

Sent: Friday, April 13, 2007 8:45 AM

Down Syndrome Treatment

Subject: New member

Good Morning!

I just joined this group. I found it linked to one of my other groups.

My name is Pat. I have 4 kids, 18,15,10 and 5 months old. My baby

Neil has ds. He has an AVcanal heart defect. We are waiting to hear

when his surgery will be.

In spite of that, he is doing quite well. The pt comes every two

weeks. He has fallen in the " normal " range when they do the tests. He

just started laughing! Especially at my husband and daughter! He's

also learning raspberries. He should have that perfected soon.

I'm hoping to learn as much as I can. I have read the only book our

library has on ds. My son is in the Early On program in Michigan.

They have one book...the same as the library.

Neil just woke up...gotta go!

Thanks,

Pat T

[Guest guest]

I live in the UP of Michigan. We moved here a couple of years ago

from the Chicago area. Neil's surgery will be at Children's Hospital

of Wisconsin in Milwaukee. I'm pretty sure his surgeon will be Dr.

Tweddell.

I used to work with a lady named Val Spulock. Any relation?

Thanks,

Pat T. (Neil's mom)

>

> >

> >

> >

> >

> > Good Morning!

> > I just joined this group. I found it linked to one of my other

groups.

> > My name is Pat. I have 4 kids, 18,15,10 and 5 months old. My

baby

> > Neil has ds. He has an AVcanal heart defect. We are waiting to

hear

> > when his surgery will be.

> >

> > In spite of that, he is doing quite well. The pt comes every two

> > weeks. He has fallen in the " normal " range when they do the

tests. He

> > just started laughing! Especially at my husband and daughter!

He's

> > also learning raspberries. He should have that perfected soon.

> >

> > I'm hoping to learn as much as I can. I have read the only book

our

> > library has on ds. My son is in the Early On program in Michigan.

> > They have one book...the same as the library.

> >

> > Neil just woke up...gotta go!

> >

> > Thanks,

> > Pat T

> >

>

[Guest guest]

Thanks Carol.

I was thinking that may be the case. We were thinking we might just

have a " Going Away " party for her when she goes to college in the

fall. It sounds like that might work better.

We've been " in seclusion " since Neil came home, in hopes of keeping

him healthy. A couple of more months won't hurt.

Thanks again,

Pat T. (Neil's mom)

>

> Welcome to the group Pat!! )

> I saw your question regarding recovery time on ds heart and wanted

to respond while here-

> My daughter has AV canal and TOF and we were told one week, but

ended up there for 2 full weeks.

> My advice is plan for the best, but take into account that you may

end up there longer.

>

> The other issue you may want to consider is the immune system is

going to be 'down' for about 4-6 weeks post op and you will want to

limit Neil's exposure to other people and their germs.

>

> So if I were you, I would plan that party a safe distance from the

surgery just to reduce over all stress. :-)

> Unless you have lots of helpers who can take over for you if need

be.

>

>

> Carol in IL AIM doihavtasay1

> Mom to seven including , 6 with TOF, AVcanal, GERD, LS,

Asthma, subglottal stenosis, and DS.

>

> My problem is not how I look. It's how you see me.

>

>

> Join our Down Syndrome information group -

> Down Syndrome Treatment/

>

> Listen to oldest dd's music http://www.myspace.com/vennamusic

>

>

>

> New member

>

> Good Morning!

> I just joined this group. I found it linked to one of my other

groups.

> My name is Pat. I have 4 kids, 18,15,10 and 5 months old. My baby

> Neil has ds. He has an AVcanal heart defect. We are waiting to hear

> when his surgery will be.

>

> In spite of that, he is doing quite well. The pt comes every two

> weeks. He has fallen in the " normal " range when they do the tests.

He

> just started laughing! Especially at my husband and daughter! He's

> also learning raspberries. He should have that perfected soon.

>

> I'm hoping to learn as much as I can. I have read the only book our

> library has on ds. My son is in the Early On program in Michigan.

> They have one book...the same as the library.

>

> Neil just woke up...gotta go!

>

> Thanks,

> Pat T

>

>

>

>

> __________________________________________________

>

[Guest guest]

Hi Kathy,

Thanks for the link. I am in the UP, though. The nearest active

support group that I've been able to find is in Green Bay, which is 2

hours away. I guess the people with Early On have tried to set

something up, but it hasn't worked out so far.

Thanks again,

Pat T (Neil's mom)

>

> Hi Pat-

>

> Welcome to the listserv;-) My name is Kathy, and my son Danny, who

has Ds,

> will be 9 at the end of July. He also had an AV canal defect, and

the 8th

> anniversary of his repair is coming up soon. He is a very healthy,

active

> kid with a great sense of humor. Danny is the youngest of my 7

kids.(the

> oldest is 24yrs).

>

> I just wanted to mention that your library should be able to get

you books

> on interlibrary loan for free. Do you have a Ds support group where

you

> live? If so, they might have a library for parents, too. (in fact,

if you

> are in the lower part of Michigan, you are welcome to be a part of

our local

> support group and check books out from our library. We are in the

Michiana

> area. Here is the webpage for our support group ,,,

>

> http://www.michianadownsyndrome.org even if you are not close

enough to be a

> member, you can click on " library' to look at the books/materials

we have in

> our library to get an idea for books to ask your library to get for

you

>

> kathyR.

>

>

>

> From: Down Syndrome Treatment

> [mailto:Down Syndrome Treatment ] On Behalf Of

houseoftroutt

> Sent: Friday, April 13, 2007 8:45 AM

> Down Syndrome Treatment

> Subject: New member

>

>

>

> Good Morning!

> I just joined this group. I found it linked to one of my other

groups.

> My name is Pat. I have 4 kids, 18,15,10 and 5 months old. My baby

> Neil has ds. He has an AVcanal heart defect. We are waiting to hear

> when his surgery will be.

>

> In spite of that, he is doing quite well. The pt comes every two

> weeks. He has fallen in the " normal " range when they do the tests.

He

> just started laughing! Especially at my husband and daughter! He's

> also learning raspberries. He should have that perfected soon.

>

> I'm hoping to learn as much as I can. I have read the only book our

> library has on ds. My son is in the Early On program in Michigan.

> They have one book...the same as the library.

>

> Neil just woke up...gotta go!

>

> Thanks,

> Pat T

>

[Guest guest]

Hi Pat,

Welcome! You mentioned in your intro that you are looking to learn more

about DS. You'll find some very helpful books at Woodbine House (link

below). The books on gross and fine motor skills and communication would

be a great place to start and the DVDs are encouraging and insightful as

well. They used to have two other books there, one on medical issues and

another on nutrition. I didn't search the site, perhaps they're on

another page. The medical book helped me get a grasp on the issues and

medical jargon particular to DS./ Babies with Down Syndrome/ is a good

overview book and might be the one you already have.

The Einstein-Syndrome website and the Riverbend Down Syndrome Parent

Support Group website also have a wealth of helpful information.

http://www.woodbinehouse.com/Down-Syndrome.29.0.0.2.htm

http://www.einstein-syndrome.com/

http://www.altonweb.com/cs/downsyndrome/index.htm?page=home.html

Blessings,

Sandy

houseoftroutt wrote:

> I'm hoping to learn as much as I can. I have read the only book our

> library has on ds. My son is in the Early On program in Michigan.

> They have one book...the same as the library.

>

>

[Guest guest]

Thanks Sandy,

I have ordered a couple of items from Woodbine House. I didn't know

about the other sites, though.

Thanks again,

Pat T (Neil's mom)

> > I'm hoping to learn as much as I can. I have read the only book

our

> > library has on ds. My son is in the Early On program in

Michigan.

> > They have one book...the same as the library.

> >

> >

>

[Guest guest]

Hi Sherelle,

Glad to meet you!! I am happy you were able to find the groupd to help

answer your questions.

You have a 2 year old boy or girl. 14 year old boy or girl. Are you getting

services? Have any specific questions you need answered?

Jeannette

mom to Grant 19 almost 20 with DS

Meddle not in the affairs of dragons for you are crunchy and good

with ketchup!

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi Sheelle,

Glad you are here! Believe me you will be able to chat with a whole

bunch of people who are funny, wise, witty and have a wealth of knowledge.

Hope you will share with us about your family as we share ours.

Loree

************************************** See what's free at http://www.aol.com.

[Guest guest]

Welcome Kathleen! I look forward to getting to know you! Blessings, Shirley

Sick sense of humor? Visit TV's Comedy with an Edge to see what's on, when.