Update

[Guest guest]

Mike,

I am glad to hear this update from you..

Nice to know that u are doing very well now..it is clear that your surgery has

been done very well and this update will boost confidence of our friends facing

E'ctomy.

I think it is better to get it done earlier,if possible ..

Mukesh

Update

Hello everyone:

Well, I had my Post-Op visit today.

First off, the J-tube is no more (ho-rah!). That was an interesting

experience. I thought it'd be about 8 " long (just enough to go into

intestine under the skin). Well, when they started pulling, it just

kept coming! The only thing that went through my mind was that magic

trick where the magician just keeps pulling yards and yards of silk

from his hand. Not painful, but nothing I'd want to repeat.

The doctor looked over my X-rays from this morning and advised that

the surgery looked " perfect. " In fact, he said it didn't even look

like I ever had anything wrong. He said that normally after an

Ectomy the stomach is fairly elongated (streched) but that mine

almost looked normal.

He has cleared me to eat and drink whatever I want, but cautioned to

use care with meats and breads. I still can only eat small portions

and he said that would last for awhile. I've lost 30lbs but he

wasn't concerned, as I was about 25lbs overweight prior to the

surgery anyway.

He also cleared me to resume driving, which is great because now I

can get out of the house more often and activity is the key to

getting my body back to normal. He stated that I could go back to

work when " I felt ready. " I think I'll take 2 more weeks to try to

work out some more of the numbness/stiffness from the incision areas

and to build my strength. I would also like to try to regulate my

diet a little bit, now that I can have " real food. "

So far, so good. I don't have to go back or have any follow-up

unless I feel I'm having a problem.

Like I said to anyone considering or facing the Ectomy, do it ASAP.

I'm 43 and realize it's taken me quite awhile to " bounce back " with

still more to go. I couldn't imagine coping with this 20-30 years

older, unless I was in super shape. Get in as good a shape as you

can prior and you will definately fair much better in the recovery.

Mike in Va

[Guest guest]

Mike so glad to hear your doing so well!! I do hope if I ever

get to that point I will do as well as you have!! Keep up the good work you’re

an inspiration to those yet to go through this. Take care!!!

C Warren

Co-Founder

www.achalasia.us

From:

achalasia [mailto:achalasia ] On Behalf Of ltmikespd

Sent: Tuesday, October 24, 2006 8:30 PM

achalasia

Subject: Update

Hello everyone:

Well, I had my Post-Op visit today.

First off, the J-tube is no more (ho-rah!). That was an interesting

experience. I thought it'd be about 8 " long (just enough to go into

intestine under the skin). Well, when they started pulling, it just

kept coming! The only thing that went through my mind was that magic

trick where the magician just keeps pulling yards and yards of silk

from his hand. Not painful, but nothing I'd want to repeat.

The doctor looked over my X-rays from this morning and advised that

the surgery looked " perfect. " In fact, he said it didn't even look

like I ever had anything wrong. He said that normally after an

Ectomy the stomach is fairly elongated (streched) but that mine

almost looked normal.

He has cleared me to eat and drink whatever I want, but cautioned to

use care with meats and breads. I still can only eat small portions

and he said that would last for awhile. I've lost 30lbs but he

wasn't concerned, as I was about 25lbs overweight prior to the

surgery anyway.

He also cleared me to resume driving, which is great because now I

can get out of the house more often and activity is the key to

getting my body back to normal. He stated that I could go back to

work when " I felt ready. " I think I'll take 2 more weeks to try to

work out some more of the numbness/stiffness from the incision areas

and to build my strength. I would also like to try to regulate my

diet a little bit, now that I can have " real food. "

So far, so good. I don't have to go back or have any follow-up

unless I feel I'm having a problem.

Like I said to anyone considering or facing the Ectomy, do it ASAP.

I'm 43 and realize it's taken me quite awhile to " bounce back " with

still more to go. I couldn't imagine coping with this 20-30 years

older, unless I was in super shape. Get in as good a shape as you

can prior and you will definately fair much better in the recovery.

Mike in Va

[Guest guest]

Hi Mike

Wow thats fantastic news from your doctor about your stomach, Its

good to hear that you are doing so well after your surgery.

It gives all of use who might need this surgery into future a much

need boost that there is a very bright light at the end of the

tunnel.

I hope Steve has managed to read your message he hasn't signed on

for a few days and I know he is due to have his op in the tree weeks

it will give him a real boost to know your are doing so well

Take care

Pippa x (England)

>

> Mike so glad to hear your doing so well!! I do hope if I ever get

to that

> point I will do as well as you have!! Keep up the good work

you're an

> inspiration to those yet to go through this. Take care!!!

>

>

>

> C Warren

>

> Co-Founder

>

> www.achalasia.us

>

> From: achalasia [mailto:achalasia ]

On Behalf

> Of ltmikespd

> Sent: Tuesday, October 24, 2006 8:30 PM

> achalasia

> Subject: Update

>

>

>

> Hello everyone:

>

> Well, I had my Post-Op visit today.

>

> First off, the J-tube is no more (ho-rah!). That was an

interesting

> experience. I thought it'd be about 8 " long (just enough to go

into

> intestine under the skin). Well, when they started pulling, it

just

> kept coming! The only thing that went through my mind was that

magic

> trick where the magician just keeps pulling yards and yards of

silk

> from his hand. Not painful, but nothing I'd want to repeat.

>

> The doctor looked over my X-rays from this morning and advised

that

> the surgery looked " perfect. " In fact, he said it didn't even look

> like I ever had anything wrong. He said that normally after an

> Ectomy the stomach is fairly elongated (streched) but that mine

> almost looked normal.

>

> He has cleared me to eat and drink whatever I want, but cautioned

to

> use care with meats and breads. I still can only eat small

portions

> and he said that would last for awhile. I've lost 30lbs but he

> wasn't concerned, as I was about 25lbs overweight prior to the

> surgery anyway.

>

> He also cleared me to resume driving, which is great because now I

> can get out of the house more often and activity is the key to

> getting my body back to normal. He stated that I could go back to

> work when " I felt ready. " I think I'll take 2 more weeks to try to

> work out some more of the numbness/stiffness from the incision

areas

> and to build my strength. I would also like to try to regulate my

> diet a little bit, now that I can have " real food. "

>

> So far, so good. I don't have to go back or have any follow-up

> unless I feel I'm having a problem.

>

> Like I said to anyone considering or facing the Ectomy, do it

ASAP.

> I'm 43 and realize it's taken me quite awhile to " bounce back "

with

> still more to go. I couldn't imagine coping with this 20-30 years

> older, unless I was in super shape. Get in as good a shape as you

> can prior and you will definately fair much better in the recovery.

>

> Mike in Va

>

[Guest guest]

Notan,

I have no idea, but seeing as how I may be facing this, and I am

seeing Dr. Rice for a second opinion next week (Nov. 2nd), I will be

certain to as him how it is usually done.

in NY

Re: Update

achalasia

> Mike wrote:

> > The doctor looked over my X-rays from this morning and advised

> that

> > the surgery looked " perfect. "

>

> Wonderful!

> > In fact, he said it didn't even look

> > like I ever had anything wrong. He said that normally after an

> > Ectomy the stomach is fairly elongated (streched) but that mine

> > almost looked normal.

> >

>

> I take it that is because they only removed the lower esophagus.

> Is that

> correct? I have the idea that most esophagectomies for achalasia

> are

> partial and the amount removed depends on how much was dilated. I

> am

> having trouble finding good statistics on this. So, I was

> wondering for

> those in our group that have had esophagectomies if they could

> comment

> on how much was taken. Or, those that are going to have it done,

> could

> comment on if they know how much will be taken.

>

> notan

>

>

[Guest guest]

As we learned, an esophagectomy is a removal of some or all of the esophagus. In obtaining the opinions that I did, I neglected to ask the doctors just how much of my esophagus they intended to remove. In light of the fact that there is now the esophagoplasty as an alternative option, with any additional opinions I obtain, I will ask how much of my esophagus the surgeon thinks should be removed. Perhaps it might influence my decision. I did get the sense that the doctors favored nearly complete removal.

PS: Manny from Long Island is having his Heller surgery next week. Since he was unable to join and I at last month's meetup, I invited him to join me for dinner. I'm happy to report that we will be getting together tonight. (Sorry Ann)

In a message dated 10/25/2006 2:08:51 P.M. Eastern Daylight Time, tracylb@... writes:

Notan,I have no idea, but seeing as how I may be facing this, and I am seeing Dr. Rice for a second opinion next week (Nov. 2nd), I will be certain to as him how it is usually done. in NY Re: Updateachalasia > Mike wrote:> > The doctor looked over my X-rays from this morning and advised > that > > the surgery looked "perfect." > > Wonderful!> > In fact, he said it didn't even look > > like I ever had anything wrong. He said that normally after an > > Ectomy the stomach is fairly elongated (streched) but that mine > > almost looked normal. > > > > I take it that is because they only removed the lower esophagus. > Is that > correct? I have the idea that most esophagectomies for achalasia > are > partial and the amount removed depends on how much was dilated. I > am > having trouble finding good statistics on this. So, I was > wondering for > those in our group that have had esophagectomies if they could > comment > on how much was taken. Or, those that are going to have it done, > could > comment on if they know how much will be taken.> > notan> >

[Guest guest]

Mike,

Seriously, you are my hero right now, as someone who is facing the

decision to do this. I'm exactly 10 years younger than you right now,

and it has been recommended by one surgeon. I am going to TCC to see

Dr. Rice next week for a second opinion, and in a strange way I am

actually excited to meet with him and see what he says.

Here's a question (probably a dumb one).....when you were making the

decision, were you actually afraid of the outcome? I guess I mean that

in a not so obvious way...let me explain.

Although I am end stage, with a hugely dilated (the only estimate I've

gotten is 12-15 cm wide, which is about 4 times that of a normal

person), food-filled sigmoid esophagus...I actually manage pretty

well. While there are many things I shouldn't eat, I haven't

drastically modified my diet. Food stays down (clearly it has plenty

of room). I have had one serious bout with aspiration pneumonia (13

days in the hospital), and clearly something needs to be done.

I guess my thing is this....all that being said, I have managed

relatively well like this for so many years that I am afraid that I

will feel worse if I get the surgery. While I don't feel great

now....always wierd pains and pangs and things feeling stuck and just

general crappiness most times when I eat. I am just afraid that I will

do the surgery and although things won't feel stuck, I just still

won't feel good because of the simple fact that my stomach is pulled

up and all the little possible side effects that goes along with it. I

am sure this is just fear of surgery and the unknown, but as with any

surgery, there are no guarantees. And while I've been given great odds

that things will be fine and normal and all that stuff, I just have

this fear that (for lack of a better phrase) it will suck and I will

still feel awful most of the time. Not sure if you had this

unexplainable apprehension, but if you did, how did you get over it?

Clearly, at some point you have to look

at how the benefits of surgery outweigh the risks, and I believe they

do in my case. Just some nagging fears that linger in the back of my

head.

Any thoughts on how you came to your decision would be appreciated....

AND, I am so truly thrilled for you that you are doing so well and

seem to be getting back to normal in such a short time period. I

appreciate your updates as they have given me much hope that maybe,

just maybe, this won't be as horrible as my mind thinks it will be.

Best wishes....keep us posted as you start to eat more stuff....I

really want to hear how it goes and what it feels like.

in NY (Continuously mulling over the 'ectomy decision, waiting

in anticipation for the appt with Dr. Rice on 11/2)

Update

achalasia

> Hello everyone:

>

> Well, I had my Post-Op visit today.

>

> First off, the J-tube is no more (ho-rah!). That was an

> interesting

> experience. I thought it'd be about 8 " long (just enough to go

> into

> intestine under the skin). Well, when they started pulling, it

> just

> kept coming! The only thing that went through my mind was that

> magic

> trick where the magician just keeps pulling yards and yards of

> silk

> from his hand. Not painful, but nothing I'd want to repeat.

>

> The doctor looked over my X-rays from this morning and advised

> that

> the surgery looked " perfect. " In fact, he said it didn't even look

> like I ever had anything wrong. He said that normally after an

> Ectomy the stomach is fairly elongated (streched) but that mine

> almost looked normal.

>

> He has cleared me to eat and drink whatever I want, but cautioned

> to

> use care with meats and breads. I still can only eat small

> portions

> and he said that would last for awhile. I've lost 30lbs but he

> wasn't concerned, as I was about 25lbs overweight prior to the

> surgery anyway.

>

> He also cleared me to resume driving, which is great because now I

> can get out of the house more often and activity is the key to

> getting my body back to normal. He stated that I could go back to

> work when " I felt ready. " I think I'll take 2 more weeks to try to

> work out some more of the numbness/stiffness from the incision

> areas

> and to build my strength. I would also like to try to regulate my

> diet a little bit, now that I can have " real food. "

>

> So far, so good. I don't have to go back or have any follow-up

> unless I feel I'm having a problem.

>

> Like I said to anyone considering or facing the Ectomy, do it

> ASAP.

> I'm 43 and realize it's taken me quite awhile to " bounce back "

> with

> still more to go. I couldn't imagine coping with this 20-30 years

> older, unless I was in super shape. Get in as good a shape as you

> can prior and you will definately fair much better in the recovery.

>

> Mike in Va

>

>

>

[Guest guest]

Hey, Mike! Wow ! You sound so great! I think you deserve a medal. If ever I need that Ectomy-thingie, boy, I'll tell you, I think I'll put your post up on the walls both at home and at the hospital. That's how we want it to go: about as perfect a job as possible. Congratulations! And, ain't it grand to be able to get out in the car again?! Yeah, baby! all best, Deborah, still driving up the Calif. coast

[Guest guest]

Notan:

You are correct - they only removed my lower E. According to my

doctor, (and most research) the upper E is more rigid with less

muscle, whereas the lower is mostly muscle. Since A affects the

muscle function, that is where your problems usually are. In my

case, ALL of the lower E was taken. The doctor said he was going to

salvage about 5 " of upper E. From what I gathered, this is typical

with Ectomy for end-stage folks like me. I hope that helps.

Mike in Va

> > The doctor looked over my X-rays from this morning and advised

that

> > the surgery looked " perfect. "

>

> Wonderful!

> > In fact, he said it didn't even look

> > like I ever had anything wrong. He said that normally after an

> > Ectomy the stomach is fairly elongated (streched) but that mine

> > almost looked normal.

> >

>

> I take it that is because they only removed the lower esophagus.

Is that

> correct? I have the idea that most esophagectomies for achalasia

are

> partial and the amount removed depends on how much was dilated. I

am

> having trouble finding good statistics on this. So, I was

wondering for

> those in our group that have had esophagectomies if they could

comment

> on how much was taken. Or, those that are going to have it done,

could

> comment on if they know how much will be taken.

>

> notan

>

[Guest guest]

:

I understand your question and will try to give you some insight

into how I reached my decision. My physical situation was almost the

same as yours, thought I didn't have any pneumonia bouts, etc.

When I had my consult with the doctor he advised that it was my

decision, that I could continue with what was then my current

lifestyle. He advised that if I did so that eventually (some unknown

number of years down the road) my E would get to the point where I'd

be lucky to " swallow my own saliva. " The question he posed to me

was, " do you want to deal with this now while you're fairly young

and healthy, or do it when your in your 60's-70's and may have other

health issues. "

Being a " bottom line " kind of guy, I felt that it was a no brainer.

They told me that it would probably be a year after the surgery

before I'd be " back to normal " and I can see that's probably going

to be the case. But the way I see it, a year from now I'll be

better, instead of 1, 5, 10 years from now I would be worse (if I

didn't do it). A year goes by pretty quick - so I figure a small

price to pay. Yes, I was worried about possible outcomes, but those

were only possible. I knew what the eventual outcome would be if I

didn't.

I hope this helps - glad to talk with you anytime.

Mike in Va

>

> Mike,

> Seriously, you are my hero right now, as someone who is facing the

> decision to do this. I'm exactly 10 years younger than you right

now,

> and it has been recommended by one surgeon. I am going to TCC to

see

> Dr. Rice next week for a second opinion, and in a strange way I am

> actually excited to meet with him and see what he says.

> Here's a question (probably a dumb one).....when you were making

the

> decision, were you actually afraid of the outcome? I guess I mean

that

> in a not so obvious way...let me explain.

> Although I am end stage, with a hugely dilated (the only estimate

I've

> gotten is 12-15 cm wide, which is about 4 times that of a normal

> person), food-filled sigmoid esophagus...I actually manage pretty

> well. While there are many things I shouldn't eat, I haven't

> drastically modified my diet. Food stays down (clearly it has

plenty

> of room). I have had one serious bout with aspiration pneumonia

(13

> days in the hospital), and clearly something needs to be done.

> I guess my thing is this....all that being said, I have managed

> relatively well like this for so many years that I am afraid that

I

> will feel worse if I get the surgery. While I don't feel great

> now....always wierd pains and pangs and things feeling stuck and

just

> general crappiness most times when I eat. I am just afraid that I

will

> do the surgery and although things won't feel stuck, I just still

> won't feel good because of the simple fact that my stomach is

pulled

> up and all the little possible side effects that goes along with

it. I

> am sure this is just fear of surgery and the unknown, but as with

any

> surgery, there are no guarantees. And while I've been given great

odds

> that things will be fine and normal and all that stuff, I just

have

> this fear that (for lack of a better phrase) it will suck and I

will

> still feel awful most of the time. Not sure if you had this

> unexplainable apprehension, but if you did, how did you get over

it?

> Clearly, at some point you have to look

> at how the benefits of surgery outweigh the risks, and I believe

they

> do in my case. Just some nagging fears that linger in the back of

my

> head.

>

> Any thoughts on how you came to your decision would be

appreciated....

>

> AND, I am so truly thrilled for you that you are doing so well and

> seem to be getting back to normal in such a short time period. I

> appreciate your updates as they have given me much hope that

maybe,

> just maybe, this won't be as horrible as my mind thinks it will

be.

>

> Best wishes....keep us posted as you start to eat more stuff....I

> really want to hear how it goes and what it feels like.

>

> in NY (Continuously mulling over the 'ectomy decision,

waiting

> in anticipation for the appt with Dr. Rice on 11/2)

>

> Update

> achalasia

>

> > Hello everyone:

> >

> > Well, I had my Post-Op visit today.

> >

> > First off, the J-tube is no more (ho-rah!). That was an

> > interesting

> > experience. I thought it'd be about 8 " long (just enough to go

> > into

> > intestine under the skin). Well, when they started pulling, it

> > just

> > kept coming! The only thing that went through my mind was that

> > magic

> > trick where the magician just keeps pulling yards and yards of

> > silk

> > from his hand. Not painful, but nothing I'd want to repeat.

> >

> > The doctor looked over my X-rays from this morning and advised

> > that

> > the surgery looked " perfect. " In fact, he said it didn't even

look

> > like I ever had anything wrong. He said that normally after an

> > Ectomy the stomach is fairly elongated (streched) but that mine

> > almost looked normal.

> >

> > He has cleared me to eat and drink whatever I want, but

cautioned

> > to

> > use care with meats and breads. I still can only eat small

> > portions

> > and he said that would last for awhile. I've lost 30lbs but he

> > wasn't concerned, as I was about 25lbs overweight prior to the

> > surgery anyway.

> >

> > He also cleared me to resume driving, which is great because now

I

> > can get out of the house more often and activity is the key to

> > getting my body back to normal. He stated that I could go back

to

> > work when " I felt ready. " I think I'll take 2 more weeks to try

to

> > work out some more of the numbness/stiffness from the incision

> > areas

> > and to build my strength. I would also like to try to regulate

my

> > diet a little bit, now that I can have " real food. "

> >

> > So far, so good. I don't have to go back or have any follow-up

> > unless I feel I'm having a problem.

> >

> > Like I said to anyone considering or facing the Ectomy, do it

> > ASAP.

> > I'm 43 and realize it's taken me quite awhile to " bounce back "

> > with

> > still more to go. I couldn't imagine coping with this 20-30

years

> > older, unless I was in super shape. Get in as good a shape as

you

> > can prior and you will definately fair much better in the

recovery.

> >

> > Mike in Va

> >

> >

> >

>

[Guest guest]

wrote:

> ... I will be

> certain to as him how it is usually done. ...

>

Thanks, I am sure there will be others that will be interested in the

information.

notan

[Guest guest]

Notan,

I'm so very sorry to hear about this latest problem!! I remember

last year when there was a lot of talk about statistics and how

achalasia patients can almost be considered " one in a million " . On

the bright side, now you can say you're even more rare than one in a

million. Seriously though, I'm hoping it's not too complicated

repairing a hiatal hernia after fundoplication. I'm sure you'll find

out more details tomorrow (and at later appointments). Are you going

back to Mayo? Even though your case isn't the norm, we still want to

know the details of what's happening for you. After all, I've poured

out details of 's case to all of you in the past and his case is

definitely out of the norm, also. Wishing you all the best, Notan!

in Michigan

[Guest guest]

Notan,

Sorry to hear about your problem..

Wish u good luck...

Hope everything will be okay..

Mukesh

Update

I had my surgery a little over a year ago. I had a barium swallow three weeks

ago. The good news is that as far as swallowing goes I have no reason even

remember that I ever had achalasia. I generally don't even need to drink with a

meal. I ate too much over the holidays. The radiologist said the wrap looks like

it is working and there is no longer any dilation of the esophagus. I am happy

about that. Now for the bad. Not a real big deal, but I have been holding this

back because I didn't want to get into speculating about it, and at first I did

not believe it. This goes back to last summer when, and you may remember, I had

a CT (CAT scan)  for another problem. The thing about CTs is that they can find

a lot more than what you are looking for. In my case there were three things

besides what it was looking for. Among those the report noted that I had a large

hiatal hernia. When I saw that I thought no way. First it is rare to have

achalasia and have a hiatal hernia. It does happen but you have to really be

unlucky. Also, with my myotomy I received a wrap. Not just any wrap but a

Toupet. Unlike the DOR which many have received the Toupet wraps around the back

and almost all the way around the esophagus. One of the benefits of the Toupet

is that it is suppose to prevent hiatal hernia. Or, so I thought. It is kind of

true. It prevents the typical hiatal hernia because it acts like a knot at the

bottom of the esophagus and prevents the LES from moving up through the hiatus.

My LES is where it should be, so in that regard it worked. However, the barium

swallow confirmed that I have a less common kind of hernia called a

paraesophageal hernia. Half of my stomach has been pushed around the wrap and up

through the hiatus into my chest. Half is above and half is below. This is not a

good thing. I will see my GI tomorrow and I suspect that he will advise me to

have another surgery. I will let you know.

Don't let this worry any of you that are thinking about treatment for

achalasia. This may have had nothing to do with my surgery and I may just be

very unlucky. I don't remember this happening to anyone else in our group. Even

if it turns out that there was some connection to the surgery it has to be an

uncommon one. I just hope this doesn't effect the good results I have had up

until now. I am having heartburn now and the radiologist said that is probably

from the hernia and not the wrap going bad. In time that can be a problem

though, so I am hoping for some good news tomorrow. Oh, I also had another CT

two weeks ago and it has nothing to do with all this. With the holidays and all

I have not yet gotten around to getting my results. No news is good news, I

hope. No more surprises.

notan

[Guest guest]

Notan, let us know what your GI says today about fixing that

hiatal hernia.

Also, you said they found three other things, but I don't think

you told us what the other two were. Didn't you have trouble

with an ankle? What else? We're all whole people, not just GI

tracts, and you can tell us if you feel comfortable. If not,

that's OK too. I hope all will be well.

Wishing everyone a happy and healthy year,

in Lancaster, PA

>I had a CT (CAT scan) for another problem. The thing

>about CTs is that they can find a lot more than what you are

>looking for. In my case there were three things besides what it

>was looking for. Among those the report noted that I had a large

>hiatal hernia.

[Guest guest]

wrote:

> Also, you said they found three other things, but I don't think

> you told us what the other two were. Didn't you have trouble

> with an ankle?

I have not had trouble with the ankle for a few years now. The knee is

more ongoing but not much of a problem right now. I did have to quit my

mountain hiking though - bummer. The reason I had the first CT was for a

kidney stone that was too big to pass. I didn't say because that subject

has been covered before. I have since learned something new though.

There may be a link to one kind of stone (oxalate) and the use of

antibiotics even many years earlier and a fix for this may be coming.

One of the other things found was related to the stone. Another is a

mass which we are watching. Most likely it is nothing.

notan

[Guest guest]

i am so sorry to hear this. my prayer goes to ! Does he take vitamins? it helps sometimes. but if his flu is way too much, then i am no doctor myself. i give my son a lot of vitamins, and he has not gotten a real bad one yet this year or in the past. he had a runny nose recently. for runny nose, i use ocean spray to clean up the nostrails....it helped. vitamins c, if you want some more information, then just ask. kksylviabrtpck@... wrote: hi all just bin in to delete mail well both boys still alex is finding it hard to shift his infection as had so many antibiotics over the years he has a very bad infection and am struggling to keep him home. … but am to frightened to let him go to hospital as was so ill last time he stayed in there r so many bugs there and am scared he will pick up....mrsa or cdif so keep your fingers x 4 us thanks will try get on asp hugs from sylv+the boys

[Guest guest]

Sorry to hear this, Sylvia…I will be praying for him.

kathyR

From:

Down Syndrome Treatment [mailto:Down Syndrome Treatment ]

On Behalf Of sylviabrtpck@...

Sent: Saturday, January 20, 2007 5:44 PM

DownSyndromeFamilyDisscussionClub@...

Cc:

Subject: update

hi all just bin in to delete mail well both boys

still alex is finding it hard to shift his infection as had so many

antibiotics over the years he has a very bad infection and am

struggling to keep him home. … but am to frightened to let him go to hospital

as was so ill last time he stayed in there r so many bugs there and

am scared he will pick up....mrsa or cdif so keep your fingers x 4 us

thanks will try get on asp hugs from

sylv+the boys

[Guest guest]

hi, sylvia, how are your doing so far as of today? I was wondering about him... kkKATHLEEN TRIPP <ktripp99@...> wrote: i am so sorry to hear this. my prayer goes to ! Does he take vitamins? it helps sometimes. but if his flu is way too much, then i am no doctor myself. i give my son a lot of vitamins, and he has not gotten a real bad one yet this year or in the past. he had a runny nose recently.

for runny nose, i use ocean spray to clean up the nostrails....it helped. vitamins c, if you want some more information, then just ask. kksylviabrtpckaol wrote: hi all just bin in to delete mail well both boys still alex is finding it hard to shift his infection as had so many antibiotics over the years he has a very bad infection and am struggling to keep him home. … but am to frightened to let him go to hospital as was so ill last time he stayed in there r so many bugs there and am scared he will pick up....mrsa or cdif so keep your fingers x 4 us thanks will try get on asp

hugs from sylv+the boys

[Guest guest]

In a message dated 24/01/2007 04:23:30 GMT Standard Time, ktripp99@... writes:

hi, sylvia,

how are your doing so far as of today? I was wondering about him... kk

hi all well chest infection has now cleared had to go hospital on monday for the day for xray to see if meds were working and yippy they were alex had one of the new antibiotcs just on market as others just dont do much now fingers x he dont get bad chest again soon and stays well he has bin left with a very bad weez but with his sprays shud be ok oscar is on mend to , alex is now eatinf us out of house+home lol good a

[Guest guest]

In a message dated 24/01/2007 19:04:36 GMT Standard Time, suelmayer@... writes:

Do you give and Cod Liver Oil? Sam had a lot of difficulty getting through the long Wisconsin winters, he continually had respiratory infections. This year I increased his Cod Liver Oil and added and antioxidant and he has been doing much better. Just a suggestion.

any thing worth a try drives me nuts alex not gone a hole month since he was fixed with out picking up a chest infection or cold , alex spent 10days in hospital in november trying to get his last chest infection under controle hugs syl

[Guest guest]

Sylvia,

Do you give and Cod Liver Oil? Sam had a lot of difficulty getting through the long Wisconsin winters, he continually had respiratory infections. This year I increased his Cod Liver Oil and added and antioxidant and he has been doing much better. Just a suggestion.

Sue

Mom to Sam (6) on NACD Program

Re: update

In a message dated 24/01/2007 04:23:30 GMT Standard Time, ktripp99sbcglobal (DOT) net writes:

hi, sylvia,

how are your doing so far as of today? I was wondering about him... kk

hi all well chest infection has now cleared had to go hospital on monday for the day for xray to see if meds were working and yippy they were alex had one of the new antibiotcs just on market as others just dont do much now fingers x he dont get bad chest again soon and stays well he has bin left with a very bad weez but with his sprays shud be ok oscar is on mend to , alex is now eatinf us out of house+home lol good a

[Guest guest]

Vitamin C, and multivitamins... give a lot of vitamin C... i was told get a lot of vit C during having colds... when recovered, reduce it to regular dosage... ocean spray is very good way to clean the nostrils!!! it will help reduce the infections. kksylviabrtpck@... wrote: In a message dated 24/01/2007 19:04:36 GMT Standard Time, suelmayerearthlink (DOT) net writes: Do you give and Cod Liver Oil? Sam had a lot of difficulty getting through the long Wisconsin winters, he continually had respiratory infections. This year I increased his Cod Liver Oil and added and antioxidant and he has been doing much better. Just a suggestion. any thing worth a try drives me nuts alex not gone a hole month since he was fixed with out picking up a chest infection or cold , alex spent 10days in hospital in november trying to get his last chest infection under controle hugs syl

[Guest guest]

Danny had a lot of feeding issues at first, too, so I can

definitely understand your frustration. It is hard to believe now that Danny

ever had the problems that he did (NG tube for 5 months, gagging, vomiting, big

time problems with textures) because he can now eat anything…doesn’t like some

foods, of course;-) but he can and does eat all textures. The first time I took

the kids out to eat, and he was actually able to eat something there was a big

day (Taco Bell, nacho chips;-)

Hang in there.

KathyR(mom to Danny, almost 9 and his 6 older sibs)

From:

Down Syndrome Treatment

[mailto:Down Syndrome Treatment ] On Behalf Of Tami

Sent: Wednesday, June 20, 2007 11:38 PM

Down Syndrome Treatment

Subject: Update

Hi,

I have

been writing in about my son Collin’s issues. Well not that this is that

big of a deal really just one more thing. We finally found out that his

swallow study wasn’t normal like they claimed it was. 4 months later but

I guess better than nothing. I have been taking him to Kennedy Kreiger

and we can now get 1/8 oz at a time of liquid where he wasn’t drinking anything

at all for over a year. They said that the swallow study showed very

delayed swallowing techniques (not a surprise there) and he had penetration

which I guess is better than aspiration and we have to thicken up his

liquids. I guess that’s about it. The feeding issues have been the

worst thing for me as far as the DS diagnosis. I hope to get through this

soon.

Thanks!

Tami

[Guest guest]

That is great, in the sense that it sounds like you are getting somewhere with all this.

We had the same thing happen to us in regards to being told something was fine ("normal swallow study" in your case), when it really wasn't. Except, we didn't find out that the issue we were dealing with (thyroid prob) wasn't fine until 8 MONTHS later!!

QadoshyahGot Down Syndrome?www.gotdownsyndrome.netBlog: http://gotdownsyndrome.blogspot.com

Update

Hi,

I have been writing in about my son Collin’s issues. Well not that this is that big of a deal really just one more thing. We finally found out that his swallow study wasn’t normal like they claimed it was. 4 months later but I guess better than nothing. I have been taking him to Kennedy Kreiger and we can now get 1/8 oz at a time of liquid where he wasn’t drinking anything at all for over a year. They said that the swallow study showed very delayed swallowing techniques (not a surprise there) and he had penetration which I guess is better than aspiration and we have to thicken up his liquids. I guess that’s about it. The feeding issues have been the worst thing for me as far as the DS diagnosis. I hope to get through this soon.

Thanks!

Tami

[Guest guest]

Tami! WOW!!!That is really a huge break through :-) Just knowing there is something physically amiss helps a lot and you have already found something to help and made real progress. Now you have your MEDICAL issue to get your insurance to pay for the feeding therapy too. :-)If they got this wrong I am willing to bet they messed up the GERD dx as well. If I were you, I would be out shopping for a new ENT and GI Dr <g> It's been my experience that no kid has issues with out some kind of underlying problem, other then DS. 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----- Original Message ----From: Tami <tami.hostetter@...>Down Syndrome Treatment Sent: Wednesday, June 20, 2007 10:38:17 PMSubject: Update

Hi,

I have been writing in about my son Collin¢s

issues. Well not that this is that big of a deal really just one more

thing. We finally found out that his swallow study wasn¢t normal

like they claimed it was. 4 months later but I guess better than

nothing. I have been taking him to Kennedy Kreiger and we can now get 1/8

oz at a time of liquid where he wasn¢t drinking anything at all for over

a year. They said that the swallow study showed very delayed swallowing

techniques (not a surprise there) and he had penetration which I guess is

better than aspiration and we have to thicken up his liquids. I guess

that¢s about it. The feeding issues have been the worst thing for

me as far as the DS diagnosis. I hope to get through this soon.

Thanks!

Tami

Be a better Heartthrob. Get better relationship answers from someone who knows. Answers - Check it out.

[Guest guest]

Wow, that's great.

QadoshyahGot Down Syndrome?www.gotdownsyndrome.netBlog: http://gotdownsyndrome.blogspot.com

Update

20 October 25, 2007 at 05:41 PM CDT

HI EVERYONE, WE ARE OVERWHELMED WITH EMOTION-TAYLOR IS DOING VERY WELL. WE ARRIVED AT THE HOSPITAL AT 4:45 AM TODAY. TAYLOR WAS ALL SMILES GOING INTO HER MRI WITH CONTRAST BEFORE SURGERY. WITH JUST A FEW TEARS INBETWEEN WHILE BEING STUCK WITH NEEDLES YET AGAIN FOR BLOOD DRAWS. THEY TOOK HER DOWN AT 7:OO AM FOR THE MRI WHICH WAS DONE IN THE OR ITSELF AND THEY STARTED SURGERY ABOUT 9:00 AM. THE SURGERY LASTED ABOUT 2 1/2 HOURS TOTAL. THE FIRST 2 SURGEONS {THERE WERE 5 TOTAL} CAME OUT AND TOLD US THAT IT HAD GONE WELL AND THAT THEY WERE ABLE TO REMOVE MORE OF THE TUMOR THAN THEY THOUGHT THEY WOULD BE ABLE TO. WE THEN WAITED FOR TAYLOR TO HAVE ANOTHER MRI IN THE OR AFTER SURGERY. DR. SPETZLER MET US AND TOLD US THAT IT WAS DEFINATELY BENIGN AND YOU COULD NO LONGER SEE THE TUMOR ON THE MRI!!! OUR MIRACLE HAS HAPPENED!!!! THERE ARE STILL TUMOR CELLS LEFT BEHIND BECAUSE IT'S IMPOSSIBLE TO REMOVE ALL OF THEM. HE SAID THAT HE WILL KEEP A CLOSE EYE ON HER FOR A LONG TIME TO COME. THESE NEXT COUPLE OF DAYS WILL BE TOUCH AND GO DUE TO A MULTITUDE OF COMPLICATIONS THAT CAN HAPPEN, BUT FOR RIGHT NOW, WE ARE NOT FOCUSING ON THOSE. WE ARE TRUELY BLESSED TO STILL HAVE HER AND THAT IS WHAT WE ARE PUTTING ALL OF OUR ENERGY INTO AND TAKING THINGS HOUR BY HOUR AND AS THEY COME. WE HAVE OUR ANGEL WITH US TODAY BECAUSE OF TWO THING; 1= DR. SPETZLER SAID YES!!!!!!! AND 2= TAYLOR'S ABILITY TO FIGHT SO HARD TO LIVE. PLEASE KEEP PRAYING FOR ANGEL, NOW THERE IS LIGHT AT THE END OF OUR ONCE DARK TUNNEL.LOVE, JEFF, LAURIE AND BLAKE

Carol in IL

AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 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

__________________________________________________