new to site

[Guest guest]

welcome to the community rich just to let you know I had the surgury last year in october I am very pleased with the outcome, i was on pills to eat before and since surgury haven't at to take any now, sometimes i do get where it seems like it won't go down but doesnt last long that could be my upper part of the esphogus doing that, as had achalasia on the bottem thats what the surgery was for, and my top part have difuse spasms but I am really pleased since the surgery I can eat now and not have all that trouble wow its great, I would recommend the surgery.

I wish you well please keep us informed of the surgery, dont think you will regret it I dont, am so glad I had it done

all the best

sue from canada

richjmurphyy <richjmurphyy@...> wrote:

Hi,My name is Rich and have recently been diagnosed with achalasia. This is after many years of just dealing with having a hard time swallowing food. Oh course several episodes of not having food go down and almost freaking out in front of family, friends and co-workers who just thing your a pig and dont know how to chew your food.I have read some posts and Im glad to see that Im not the only one to suffer from choking and vomitting while trying to sleep.I have seen a surgeon in NYC who is considered a leader in laposcopic surgury and wants to operate soon. I also need to undergo another test to determine the "squeezing power" at the bottom of my esophagus.Can anyone who has had successful surgery, let me know what is in store. I understand everyone reacts different to surgery but any info is welcome. Im overweight but in good shape according to EKG's and blood pressure testing, so Im hoping for the best outcome.Thanks in advance.Rich

[Guest guest]

Hi Rich,

Welcome to the group. I am also fairly new to the group. I had the

myotomy with a partial wrap done laproscopically about six months

ago. From what my doctors have told me, the biggest risk with having

the surgery is perforating the esophagus(this is also the case when

having the dilatations which I have never had) however, if it

happens during surgery ,it is under a controlled enviornment and

they are right there to fix it. This is what happened with my

surgery. The probable reasons for the perforation were being

overweight and also having alot of scar tissue to cut through. What

was supposed to be a 2 hour surgery ended up to be 5+ hours and my 2

day stay in the hospital ended up being a week. I was on an IV my

entire stay in the hospital with no food or drink until day six

after they confirmed that there was no leakage from the perforation.

All in all, I think my surgery was a great success despite the

complications. I even lost 20 lbs. being on the IV for a week (which

was great for me....and I haven't gained it back!) The first thing I

remember my doctor telling me when I woke up after surgery was " You

are going to be thin " .(I'm still working on that,but those words

help alot).

After I got my O.K. to start eating , I was on a liquid diet for a

week,soft foods for another week and within 6 weeks and just in time

for the 4th of July, we had steak and lobster on the grill. (I was

still afraid of the steak but the lobster went down great!!)

No more choking and wondering weather the food will go down or come

back up, and no more jumping up and down to get the food down.

Having the surgery was one of the best decisions that I've ever made.

It's not perfect, but it's sooo much better!

We're going out to dinner next Sunday to celebrate my oldest son's

and my birthday and also my 6 month post-op anniversary! This will

be my first time going out to a restaurant since my surgery. I'm

very excited!!! ( I hope it all goes down well.) Wish me luck!!

All the best to you and I hope that you too will have a very

successful surgery ( but without the complications)!

Sandi in California

---

In achalasia@y..., " richjmurphyy " <richjmurphyy@y...> wrote:

> Hi,

> My name is Rich and have recently been diagnosed with achalasia.

This

> is after many years of just dealing with having a hard time

> swallowing food. Oh course several episodes of not having food go

> down and almost freaking out in front of family, friends and co-

> workers who just thing your a pig and dont know how to chew your

food.

> I have read some posts and Im glad to see that Im not the only

one

> to suffer from choking and vomitting while trying to sleep.

> I have seen a surgeon in NYC who is considered a leader in

laposcopic

> surgury and wants to operate soon. I also need to undergo another

> test to determine the " squeezing power " at the bottom of my

esophagus.

>

> Can anyone who has had successful surgery, let me know what is in

> store. I understand everyone reacts different to surgery but any

info

> is welcome. Im overweight but in good shape according to EKG's and

> blood pressure testing, so Im hoping for the best outcome.

> Thanks in advance.

>

> Rich

[Guest guest]

Hi Rich,

I had the surgery five years ago and consider it a success because my

severe chest pain, which I considered the worst of my symptoms, went

away. My GI doc and my surgeon made a point of telling me that as a

person with Achalasia, I'll never be able to guzzle a can of Coke or

eat a slice of pizza in twelve seconds flat, but that with the

surgery I'd be able to eat like a normal person without either having

to stop eating because I'm so uncomfortable with the food

being " stuck " or running to the loo to regurgitate. For the most

part, I've been able to eat normally. If I eat too fast, I end up

having to throw up. Once every six-weeks to two months, I'll get an

episode of chest pain/spasms accompanied by intense nausea and

throwing up of white foam. These range from mild and over in a few

minutes to all day affairs.

Pre-surgery I had balloon dilations (which were unsuccessful) and I

was on Procardia for the chest pain and beta blockers for the acidy

feeling. Since the surgery, I've been medication free. I only take

the occassiona Pepcid AC.

Also, you mentioned you visited a surgeon in NYC. I live in NYC and

can wholeheartedly recommend my GI doc, Arnon Lambroza, an expert in

Achalasia (he's on Park, Upper East Side), and Nasser Altorki at New

York Hospital, who performed my surgery.

Hope you're feeling well today! Sounds like you have a good sense of

humor about the horrors of Achalasia--boy, does that help!

--

[Guest guest]

> > Hi,

> > My name is Rich and have recently been diagnosed with achalasia.

> This

> > is after many years of just dealing with having a hard time

> > swallowing food. Oh course several episodes of not having food go

> > down and almost freaking out in front of family, friends and co-

> > workers who just thing your a pig and dont know how to chew your

> food.

> > I have read some posts and Im glad to see that Im not the only

> one

> > to suffer from choking and vomitting while trying to sleep.

> > I have seen a surgeon in NYC who is considered a leader in

> laposcopic

> > surgury and wants to operate soon. I also need to undergo another

> > test to determine the " squeezing power " at the bottom of my

> esophagus.

> >

> > Can anyone who has had successful surgery, let me know what is in

> > store. I understand everyone reacts different to surgery but any

> info

> > is welcome. Im overweight but in good shape according to EKG's and

> > blood pressure testing, so Im hoping for the best outcome.

> > Thanks in advance.

> >

> > Rich

[Guest guest]

Hello Rich,

I had a laposcopic heller myotomy about one month ago now and I can't

speak highly enough of it. The first couple days after surgery were a

bit rough, but starting on day 3 I rapidly perked up and was able to

start weaning myself from the pain meds.

I am now eating anything I want without trouble. I just take smaller

bites than I used to and remember to chew my food well. This is

perhaps the biggest change for me because I used to scarf down my

food fairly quickly. Now I take my time and enjoy my food.

The only on going problem I have are spasms. The generally happen at

night, but are easily dealt with by drinking water. I should mention

that I had spasms before the operation too, so this is not a new

thing for me.

In short, be prepared for a few rough days right after surgery, but

an overall speedy recovery. I was working from home 5 days after

surgery and back to work 12 days after surgery (with the doctors

blessing). From what I've read, I may have bounced back a little

quicker than most, but the point is that this shouldn't lay you up

for too long.

Go for it and good luck!

-Davin

P.S. Feel free to write if you have any detailed questions.

> Hi,

> My name is Rich and have recently been diagnosed with achalasia.

This

> is after many years of just dealing with having a hard time

> swallowing food. Oh course several episodes of not having food go

> down and almost freaking out in front of family, friends and co-

> workers who just thing your a pig and dont know how to chew your

food.

> I have read some posts and Im glad to see that Im not the only one

> to suffer from choking and vomitting while trying to sleep.

> I have seen a surgeon in NYC who is considered a leader in

laposcopic

> surgury and wants to operate soon. I also need to undergo another

> test to determine the " squeezing power " at the bottom of my

esophagus.

>

> Can anyone who has had successful surgery, let me know what is in

> store. I understand everyone reacts different to surgery but any

info

> is welcome. Im overweight but in good shape according to EKG's and

> blood pressure testing, so Im hoping for the best outcome.

> Thanks in advance.

>

> Rich

[Guest guest]

Hi Bob,

Where are you located? Has your surgeon done many of these procedures? That is

the key. Because this is a rare condition some surgeons don't have the experience and

tend not to do well. Please make sure you ask how many of these procedures he has

done - if you are considering the surgery. Try to find out how successful he has been.

My surgeon said that they now extend the incision well into the esophagus and have

better results with this technique. You could ask about that approach and see what kind

of response you get. There is a list on this web site of surgeons people have use and

comments about them. There is also medical literature from respected medical journals

on this web-site about the procedure.

Again - good luck in your efforts. The dilation should really help you. After 9 days

of no food and no water _ just popsicles, I was able to eat everything and definitely

loaded the food on so I could be in a better nutritional state before surgery.

All the best.

Bobbie

[Guest guest]

-Sory to hear of all your little ones troubles, I have a 2 year old,

and hardly know anything myself... Just hope things get better for

you. I am sure there are moms on this board who have children who

may have had the same experience, or at least knowledge of something

to help you.... Kathleen and conan

-- In , " belyri2 " <rionfam@g...> wrote:

> Hi! We are new to the site and are here with alot of

questions!

> I have a 4 year old daughter (Reagon) who was diagnosised with an

> immune deficiency (CVID) at 6 months old. She has received IVIG

> since then. For about a year now she has had horrible reactions

> starting 48 hours after the infusion. She has really bad migraine

> headaches that are so bad she holds the back of her head and and

> cries every time she moves it. She vomits for 24 hours straight

and

> her whole body shakes. She get very disoriented and her speech

gets

> slurred. The whole thing scares me to death. We had weened her

> IVIG's to every 3 months because of the reactions and she had been

> doing great. She only had and IVIG in Oct. and Feb. with only one

> ear infection in Feb. before infusion. But by June her levels were

> down to 75 and she got bronchitis so the doctor wants to go back

to

> once a month again! I'm so disappointed since she (in my mind)

was

> doing so well even when getting them every 3 months. She has only

> received 3 IVIG's in 9 months and had only had 1 ear infection &

> bronchitis! Her WBC count was fine as was the rest of her blood

> work and the catscan of her lungs showed no damage was occuring.

> Her food allergies were the same, digestive was great and no

asthma.

> I had asked her dr. about keeping the IVIG's at 3 months but

putting

> her on a daily antibiotic, but he wouldn't do it. We have tried

> EVERY thing to prevent the reactions, but nothing works. They

give

> her her infusions over a 10-12 hour time period,give her premeds,

> postmeds, Zofran & send her home on an IV of fluids for 3 days,

but

> nothing works. They have also tried several different products,

but

> they all have the same effect. I keep praying since this was

> something she has had since birth that MAYBE one day her little

> immune system will kick in. Anyone know of someone that that's

> happened to?

> Thanks!

> Becki

[Guest guest]

-Sory to hear of all your little ones troubles, I have a 2 year old,

and hardly know anything myself... Just hope things get better for

you. I am sure there are moms on this board who have children who

may have had the same experience, or at least knowledge of something

to help you.... Kathleen and conan

-- In , " belyri2 " <rionfam@g...> wrote:

> Hi! We are new to the site and are here with alot of

questions!

> I have a 4 year old daughter (Reagon) who was diagnosised with an

> immune deficiency (CVID) at 6 months old. She has received IVIG

> since then. For about a year now she has had horrible reactions

> starting 48 hours after the infusion. She has really bad migraine

> headaches that are so bad she holds the back of her head and and

> cries every time she moves it. She vomits for 24 hours straight

and

> her whole body shakes. She get very disoriented and her speech

gets

> slurred. The whole thing scares me to death. We had weened her

> IVIG's to every 3 months because of the reactions and she had been

> doing great. She only had and IVIG in Oct. and Feb. with only one

> ear infection in Feb. before infusion. But by June her levels were

> down to 75 and she got bronchitis so the doctor wants to go back

to

> once a month again! I'm so disappointed since she (in my mind)

was

> doing so well even when getting them every 3 months. She has only

> received 3 IVIG's in 9 months and had only had 1 ear infection &

> bronchitis! Her WBC count was fine as was the rest of her blood

> work and the catscan of her lungs showed no damage was occuring.

> Her food allergies were the same, digestive was great and no

asthma.

> I had asked her dr. about keeping the IVIG's at 3 months but

putting

> her on a daily antibiotic, but he wouldn't do it. We have tried

> EVERY thing to prevent the reactions, but nothing works. They

give

> her her infusions over a 10-12 hour time period,give her premeds,

> postmeds, Zofran & send her home on an IV of fluids for 3 days,

but

> nothing works. They have also tried several different products,

but

> they all have the same effect. I keep praying since this was

> something she has had since birth that MAYBE one day her little

> immune system will kick in. Anyone know of someone that that's

> happened to?

> Thanks!

> Becki

[Guest guest]

Becki!

We're so glad you found us! I just welcomed Toni too. You may want to read

that response and also the one entitled RE: IVIG Question (they show up as from

Wenoka & ) otherwise, I think I would pretty much be repeating myself.

God bless,

Wenoka

New to site

Hi! We are new to the site and are here with alot of questions!

I have a 4 year old daughter (Reagon) who was diagnosised with an

immune deficiency (CVID) at 6 months old. She has received IVIG

since then. For about a year now she has had horrible reactions

starting 48 hours after the infusion. She has really bad migraine

headaches that are so bad she holds the back of her head and and

cries every time she moves it. She vomits for 24 hours straight and

her whole body shakes. She get very disoriented and her speech gets

slurred. The whole thing scares me to death. We had weened her

IVIG's to every 3 months because of the reactions and she had been

doing great. She only had and IVIG in Oct. and Feb. with only one

ear infection in Feb. before infusion. But by June her levels were

down to 75 and she got bronchitis so the doctor wants to go back to

once a month again! I'm so disappointed since she (in my mind) was

doing so well even when getting them every 3 months. She has only

received 3 IVIG's in 9 months and had only had 1 ear infection &

bronchitis! Her WBC count was fine as was the rest of her blood

work and the catscan of her lungs showed no damage was occuring.

Her food allergies were the same, digestive was great and no asthma.

I had asked her dr. about keeping the IVIG's at 3 months but putting

her on a daily antibiotic, but he wouldn't do it. We have tried

EVERY thing to prevent the reactions, but nothing works. They give

her her infusions over a 10-12 hour time period,give her premeds,

postmeds, Zofran & send her home on an IV of fluids for 3 days, but

nothing works. They have also tried several different products, but

they all have the same effect. I keep praying since this was

something she has had since birth that MAYBE one day her little

immune system will kick in. Anyone know of someone that that's

happened to?

Thanks!

Becki

[Guest guest]

Becki!

We're so glad you found us! I just welcomed Toni too. You may want to read

that response and also the one entitled RE: IVIG Question (they show up as from

Wenoka & ) otherwise, I think I would pretty much be repeating myself.

God bless,

Wenoka

New to site

Hi! We are new to the site and are here with alot of questions!

I have a 4 year old daughter (Reagon) who was diagnosised with an

immune deficiency (CVID) at 6 months old. She has received IVIG

since then. For about a year now she has had horrible reactions

starting 48 hours after the infusion. She has really bad migraine

headaches that are so bad she holds the back of her head and and

cries every time she moves it. She vomits for 24 hours straight and

her whole body shakes. She get very disoriented and her speech gets

slurred. The whole thing scares me to death. We had weened her

IVIG's to every 3 months because of the reactions and she had been

doing great. She only had and IVIG in Oct. and Feb. with only one

ear infection in Feb. before infusion. But by June her levels were

down to 75 and she got bronchitis so the doctor wants to go back to

once a month again! I'm so disappointed since she (in my mind) was

doing so well even when getting them every 3 months. She has only

received 3 IVIG's in 9 months and had only had 1 ear infection &

bronchitis! Her WBC count was fine as was the rest of her blood

work and the catscan of her lungs showed no damage was occuring.

Her food allergies were the same, digestive was great and no asthma.

I had asked her dr. about keeping the IVIG's at 3 months but putting

her on a daily antibiotic, but he wouldn't do it. We have tried

EVERY thing to prevent the reactions, but nothing works. They give

her her infusions over a 10-12 hour time period,give her premeds,

postmeds, Zofran & send her home on an IV of fluids for 3 days, but

nothing works. They have also tried several different products, but

they all have the same effect. I keep praying since this was

something she has had since birth that MAYBE one day her little

immune system will kick in. Anyone know of someone that that's

happened to?

Thanks!

Becki

[Guest guest]

Becki,

Hi, my son gets IVIG every 4 weeks without any problems, but from what I

have heard on this site...you may want to inquire about SubQ IG. My Dr.

told me it can almost eliminate a lot of the severe reactions that some

people have with the IVIG. You may be able to look at the past posting on

it, or maybe someone more knowledgeable can give you an explanation on

exactly how it works. We haven't gone that route yet, but haven't ruled it

out for the future.

Good luck!

Kim, Mom to 8 - CVID

I

New to site

> Hi! We are new to the site and are here with alot of questions!

> I have a 4 year old daughter (Reagon) who was diagnosised with an

> immune deficiency (CVID) at 6 months old. She has received IVIG

> since then. For about a year now she has had horrible reactions

> starting 48 hours after the infusion. She has really bad migraine

> headaches that are so bad she holds the back of her head and and

> cries every time she moves it. She vomits for 24 hours straight and

> her whole body shakes. She get very disoriented and her speech gets

> slurred. The whole thing scares me to death. We had weened her

> IVIG's to every 3 months because of the reactions and she had been

> doing great. She only had and IVIG in Oct. and Feb. with only one

> ear infection in Feb. before infusion. But by June her levels were

> down to 75 and she got bronchitis so the doctor wants to go back to

> once a month again! I'm so disappointed since she (in my mind) was

> doing so well even when getting them every 3 months. She has only

> received 3 IVIG's in 9 months and had only had 1 ear infection &

> bronchitis! Her WBC count was fine as was the rest of her blood

> work and the catscan of her lungs showed no damage was occuring.

> Her food allergies were the same, digestive was great and no asthma.

> I had asked her dr. about keeping the IVIG's at 3 months but putting

> her on a daily antibiotic, but he wouldn't do it. We have tried

> EVERY thing to prevent the reactions, but nothing works. They give

> her her infusions over a 10-12 hour time period,give her premeds,

> postmeds, Zofran & send her home on an IV of fluids for 3 days, but

> nothing works. They have also tried several different products, but

> they all have the same effect. I keep praying since this was

> something she has had since birth that MAYBE one day her little

> immune system will kick in. Anyone know of someone that that's

> happened to?

> Thanks!

> Becki

>

>

>

>

> This forum is open to parents and caregivers of children diagnosed with a

> Primary Immune Deficiency. Opinions or medical advice stated here are the

> sole responsibility of the poster and should not be taken as professional

> advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

> /messages

>

[Guest guest]

,

Welcome, about the botox injections, there have been others that

have said that it made surgeries more difficult because of the scar tissue it

creates. I don’t personally know, because I only had dilations

before my 2 surgeries.

C Warren

Co-Founder

www.achalasia.us

From:

achalasia [mailto:achalasia ] On Behalf Of garyherman3

Sent: Thursday, July 13, 2006 1:29 PM

achalasia

Subject: New to Site

I have achalasia now for about 6 years. I'm 42

and my Dr. never

actually diagnosed, but treates as such. After approx. 8 botox

sessions which really do very little, I have been referred to a

digestive disease center in Phila. for possible surgery. Taking

niphedipine helps and allows me to get food down. Can anyone advise

as to the effectiveness of the surgery. Does the 8-10 botox

treatments really hurt chances at success. Running joke is I still am

a little overweight, but have lost about 15 lbs. in last year. Any

info. is very much appreciated.

[Guest guest]

,

The evidence for this appears to be all anecdotal. I have read much discussion on this subject. However, both my gastroenterologist and my surgeon have told me that Botox makes no difference. When I probed the surgeon a little harder he did say that some interventions can cause scar tissue to build up but a skilled surgeon can accomodate this within his surgery. This does kind of make sense when you think that people do have revision of myotomies and surgery causes far more scar tissue and they find a way of repeating surgery. However, I am not an expert and you will need to be guided by your surgeon.

STEVE

New to Site

I have achalasia now for about 6 years. I'm 42 and my Dr. never actually diagnosed, but treates as such. After approx. 8 botox sessions which really do very little, I have been referred to a digestive disease center in Phila. for possible surgery. Taking niphedipine helps and allows me to get food down. Can anyone advise as to the effectiveness of the surgery. Does the 8-10 botox treatments really hurt chances at success. Running joke is I still am a little overweight, but have lost about 15 lbs. in last year. Any info. is very much appreciated.

[Guest guest]

,

My son,Bimal ,age 25, had 2 dilatations in 1994 n then he was fine,( with the

help of water while eating).

In june'06 ,he suddenly faced the total blockage of food and we got him done

3rd dilatation. After this , he is fine now..he doesn't have any pain etc

now,but Dr. Has advised us to go for Heller's myotomy bcoz his esophagus has got

large..

I am now thinking to get laparoscopic surgery done by Nov/Dec'06.

In your case also, I believe that if your esophagus is getting bigger, you may

need to go for surgery.

Mukesh from Mumbai -India.

New to site

Hello Everyone,

I've had achalasia for about 1 1/2 years, but I beleive I've had it for much

longer. I've had

three balloon dilations and the third one was the charm. It's only been 5 days

but I'm

eating and the food is staying down (Can't be any happier than that). Still

avoiding foods

with high acid and don't know if I have to but I'm getting severe chest

pain/back pain.

I was wondering if anyone has had this procedure done and if the result are

positive. I'm

worried that my symptoms will return.

Would anyone like to share their story?

[Guest guest]

Hi Mukesh,

thank you for your response, I'm currently in a clinical study which will allow

the doctors to

keep a close eye on me and my progress. However, I will keep your son's

condition in mind

if ever my achalasia returns.

I hope everything goes well with your son and good luck!!!!

Thank you again,

>

> ,

> My son,Bimal ,age 25, had 2 dilatations in 1994 n then he was fine,( with the

help of

water while eating).

> In june'06 ,he suddenly faced the total blockage of food and we got him done

3rd

dilatation. After this , he is fine now..he doesn't have any pain etc now,but

Dr. Has advised

us to go for Heller's myotomy bcoz his esophagus has got large..

>

> I am now thinking to get laparoscopic surgery done by Nov/Dec'06.

>

> In your case also, I believe that if your esophagus is getting bigger, you may

need to go

for surgery.

>

> Mukesh from Mumbai -India.

>

>

>

>

>

>

> New to site

>

> Hello Everyone,

>

> I've had achalasia for about 1 1/2 years, but I beleive I've had it for much

longer. I've

had

> three balloon dilations and the third one was the charm. It's only been 5 days

but I'm

> eating and the food is staying down (Can't be any happier than that). Still

avoiding foods

> with high acid and don't know if I have to but I'm getting severe chest

pain/back pain.

>

> I was wondering if anyone has had this procedure done and if the result are

positive. I'm

> worried that my symptoms will return.

>

> Would anyone like to share their story?

>

>

>

[Guest guest]

, welcome to our group. I am so sorry Tia

may have achalasia. There is hope so don't

give up.

You did not say what doctor your daughter had,

but I just wanted to say how important it is to

have a doctor who has experience in treating

achalasia. You are lucky that one of the best is

in Seattle. His contact information is:

A Pellegrini; +1 206 543-3106, +1 206 543-3680; Box 356410BB-487 Health SciencesFAX: +1 206 685-6912email - pellegri@...

If your insurance or finances permit it would be

good to take her here since they have a swallowing

center and even if it is not achalasia, they should

be a good place to go.

I hope this helps and please keep us up to date on

her progress.

Maggie

Alabama

[Guest guest]

, I meant to include a link to Dr. Pelletrini's

web site and forgot, so here it is.

UW Department of Surgery

I see you have had others sending you info on

him too.

Good luck, we care.

Maggie

[Guest guest]

,

If you've been on achalasia.us, you probably know that it's

important to have the surgery done by an experienced surgeon.

Dr. Pellegrini in Seattle is supposed to be one of the best.

http://depts.washington.edu/surgery/faculty/pellegrini.html

I don't suppose their manometry machine is broken. Why not call

there and see how quickly they can fit Tia in for testing?

Good luck. I'm sure you will find good care for Tia.

in Lancaster, PA

new to site

> Hi,

>

> My name is and I found the achalasia site and contacted

>

> W. she told me about this group. I live way up North in the

> Olympic

> Peninsula. Sequim, Washington northwest of Seattle.

>

> My daughter, Tia is right in the middle of testing to confirm

> if she

> has achalasia or not. She is only 9 years old. We have had many

> tests, and dialation of her lower esophagus. Last week, another

> upper GI showed that barium was getting stuck in her esophagus

> and

> there is narrowing again. Her dialation was only 3 weeks ago.

> She

> has to have a manometry study to see if she has achalasia or

> not.

> From everything I have read she is a classic case,

> agrees. Our

> doctor has already said surgery is the next step.

>

> The thing that is delaying testing is that the instrument that

> is

> needed for the manometry is broke. We were hoping to get the

> test

> done this week. Now they are saying it will be another week. I

> called the doctor today and let him know that to wait another

> week

> seems like a lifetime to watch my daughter suffer. She is

> vomiting

> almost everytime she eats. She is in 4th grade and weighs only

> 55

> pounds. She quickly runs out of steam because she isn't eating

> and

> her mood is very sullen at times. She tells us all the time

> " why

> can't they fix me " .

>

> I know that we don't know if she has achalasia or not. But even

> if

> she doesn't, there is not other place to talk to people that

> are

> dealing with the same sort of issues. This is so hard. My

> husband

> and I feel so helpless and this waiting game is going to make

> my

> head explode.

>

> Well that is my story, for now. I'm glad I found you all.

> Thanks for

> letting me tell my story.

> Sincerely,

>

>

[Guest guest]

> My name is

> My daughter, Tia is right in the middle of testing to confirm if she

> has achalasia or not. She is only 9 years old.

Hi ,

My daughter is also 9yo (will be 10 in December) and she was diagnosed

with achalasia in 2002 when she was just 5yo. She has had a lap

myotomy twice - in July 2002 and Jan 2006 and can now eat much more

easily.

In 2002 she was very much like your daughter - could keep very little

down and regurgitated her food many times a day. Thankfully she is

much better now although still has to drink quite a lot of water with

meals. In 2002 she was eating just enough to keep her going through

school - her music teacher who saw her just once a week noticed how

she faded over the summer term and she would come home and just flop

on the sofa. Whilst she did not lose weight, her growth stopped dead.

She is now growing normally - I think about 75th centile on height and

25th on weight - but she has always been slim and is now pretty

active. She eats a great variety of food and takes part in lots of

activities. She is 4'6 " tall and weighs about 60lbs.

I wish you and your daughter well and hope you can find someone who

can do an excellent myotomy on her so that she can move on with her

life and enjoy the fun childhood should bring with it.

--Sue--

Mum to Stephi, 9yo

Nottingham, UK

[Guest guest]

That is not fair that your nine-year old baby girl has this nasty problem! I'm going to put in her name in my prayers at night and you, too, and this site and all its great contributors will be on your side. Best Wishes, Deborah

[Guest guest]

" medic9728 " medic9728@... medic9728 wrote:

>

> Hi all New to the site and new to this format. I've been back from

> Iraaq for a year where I worked as a reomote medic. Looking to go

> somewhere again

Something wrong with Iraq? We're still here, ya know!

Rob

[Guest guest]

That's true Rob, guys like us love it. It is where you get to know yourself.

Stay well and be safe!!!

Cheers

Byron

rsdrn@... wrote:

" medic9728 " medic9728@... medic9728 wrote:

>

> Hi all New to the site and new to this format. I've been back from

> Iraaq for a year where I worked as a reomote medic. Looking to go

> somewhere again

Something wrong with Iraq? We're still here, ya know!

Rob

[Guest guest]

Hi Matt

Glad to see you finally got on the list.

M

>From: " medic9728 " <medic9728@...>

>Reply-

>

>Subject: New to site

>Date: Mon, 13 Nov 2006 23:11:06 -0000

>

>Hi all New to the site and new to this format. I've been back from

>Iraaq for a year where I worked as a reomote medic. Looking to go

>somewhere again

>

>

>

[Guest guest]

Congratulations!!! My little girl is 3 and she is just the best. We worry too

sometimes but we also are having lots of fun.

This is a great list with many wonderful parents who know a lot and who will I

am sure be able to answer any questions that you may have. Feel free to vent

too.

Dawn

Sullivan <lsull70@...> wrote: Hi all.

Found your group on a DS support group list. I've also contacted DSNetwork 21.

I'm not exactly computer savvy, so I apologize if I've already posted here, but

I'll introduce myself anyway.

My name is , and I'm pregnant with my third child. My husband and I each

have two kids from previous marriages, so this is number 5....the " ours " baby.

We found out a couple of months ago that the baby has Down Syndrome. I've been

literally bombarding myself with information since the day we found out there

MIGHT be a " problem " with the baby, and the best resources I've found are the

accounts and stories of other parents.

I know that I'll be delivering during the first week of March (via c-section). I

do know what I'm having, but my husband does not, so I can't reveal that little

tidbit of information as of yet. The baby has two small holes (one is the av

canal defect) that will require surgery, but not immediately. I'll be delivering

in New Brunswick (here in NJ), and the baby will have the surgery performed at

Children's Hospital of Philadelphia. Beyond that, everything else is

wait-and-see.

We initially found out there was something amiss when I had a targeted

ultrasound during my fourth month. I realized the technicians were taking a LOT

of pictures, but figured things had changed since I had my son (7 years ago) and

that they were either being very thorough, or they weren't very good at it! lol

Anyway, the doctor told us that day that she had a VERY strong feeling that the

baby had a genetic abnormality....most likely DS. They saw an absence of the

fetal nasal bone (apprently a very strong indicator), a possible hear defect,

and a smaller 5th digit on the hand. (All of which I explained away over the

next few days and convinced myself that the doctor didn't know what SHE was

doing, either!) It took a few minutes for me to believe that the conversation

was happening, and then I lost it.....for about 3 minutes......then I was fine,

then I wasn't, then I was fine again......etc. I'm sure you've all been

there!!!! Anyway, we decided to have an immediate

amnio, and we now know for sure.

So, in a nutshell, we're doing better and feeling more optimistic, though still

plagued by occasional bouts of fear in the middle of the night. If you ever see

a posting from me at 3 am....that's why! I look forward to learning from you

all, and hopefully to also be able to share my experiences as an expectant mom

with anyone else out there in the same boat.

Thanks for your time.

Hurley

[Guest guest]

You are in for the ride of your life, I mean that in the best possible way!

Our Ruthie is our 6th child, she just turned two. She also had an AV Canal

defect, the hole between the upper chambers was rather large, the one

between the lower was rather small and the valves across the middle that

should have been two, were only one. In spite of all that, she was off

oxygen and home only 5 days after her birth (I also had a c-section) and had

no medications to take. Her surgery was at 4 1/2 months, a few of the most

scary, stressful days of our lives, but she came through with flying colors

and was home only 2 DAYS after open heart surgery.

She has totally captivated our whole family. Our older children are 20, 18,

14 (15 in May), 12 (13 in March) and 6 1/2. They all help her learn and

she's nearly walking (taking independent steps, just not exclusively walking

yet), doing sign language and saying a few words, she just graduated to a

toddler bed and is doing amazingly well in all areas. She does all the

things a typical kid does, she just takes a little longer to get there.

Congratulations on your new baby and remember, s/he will be first and

foremost a baby!

Sue

>

> I know that I'll be delivering during the first week of March (via

> c-section). I do know what I'm having, but my husband does not, so I can't

> reveal that little tidbit of information as of yet. The baby has two

> small holes (one is the av canal defect) that will require surgery, but

> not immediately. I'll be delivering in New Brunswick (here in NJ), and

> the baby will have the surgery performed at Children's Hospital of

> Philadelphia. Beyond that, everything else is wait-and-see.