HELP!!!

[Guest guest]

for me on that...

usually two alka s. in fruit juice concentrante

mixed with club soda 3:1 ratio club to fruit con.

(16 oz)..poun d and repeat until pain goes away

>

> Hi everyone,

>

> I am a new member and amazed and excited to see there are others

> going through the same things l do (not that l wish this condition

> on anyone, but there is worse).

> A little into my background, l was diagnosed over 10 years ago.

> Finding it was getting worse l underwent 2 dilatations, with no

> change. Then finally after nothing would go down l was operated on

> in 1998, Hellers myotomy and nissen fundiplication. Unfortunately

> this resulted in a 2 month stay in hospital and several drain

tubes

> for about two years, as l ended up having a perforation. Keeping

in

> mind anyone thinking of operating, what happened to me is a rare

> occurance, but life was hell for a while there, though there was

> still problems with swallowing the positive was food was passing

> with fluid.

> Now here l am again 2006 delaying another operation as l am

> having problems all over again. I am about to have my third round

> of botox, with the first course lasting about 2-3 months, then the

> second only lasting 1 month. Anything to delay the

> operation.....Basically l am after advice from anyone about the

> chest pain that can come on at any time and bring me to my knees

for

> a number of hours, and really to hear if others have had to repeat

> operations. Then how am l to know that it will not happen

again.....

>

> Looking forward to hearing from anyone with any advice, thanx

>

> Juls

>

[Guest guest]

There are several people in the group that live down under so you might hear from them. I do get spasms ever now and then. Before my second surgery I used to get many of them and I would also have to sleep in a reclined position. Now though I have very few spasms and I can even sleep flat. I keep in mind though that this is a progressive disease and that my "E" might change over time. I hope I do not have to have any more surgery but I know there is a possibility that I could have more surgery.

Keep your chin up and I hope you can get relief soon.

in Suffolk

[Guest guest]

Juls, welcome to our board.

You did not say who your surgeon was, but we had one visit

and post on our board a few times. His name was

Bessell. At least one of our members has used him for a

myotomy. You might want to contact him for a second

opinion, unless of course he was your surgeon. You can

find him here:

www.gisurgery.net

Then by clicking on contact, you will have all his contact

information.

I hope you find some answers soon.

Maggie

Alabama

[Guest guest]

Hi , Thanx for your message. I am from Australia, over the ther side of the world. Sorry to hear you have had such a struggle, but l am happy to hear there is light at the end of the tunnel. I have got a great specialist, it is the surgeon l am looking at changing (even though he was supposed to be one of the best, l have lost my faith). Do you get the chest pains/spasms? Hope all is well, Julsmuellmeris@... wrote: Juls, welcome to the group. Sorry to hear that you have such a difficult time with your first surgery. I would suggest you fine a specialist and go and have a consult with them if you have not already.

I had a second surgery last May and I am really glad I did it. I also was having a lot of pain when I would eat and drink. I also got to the point again where I could not get water down. After having my second surgery I no longer have pain when I eat and I have not had any trouble eating anything I want. I hope this helps you out a little. If you would like to talk more you are very welcome to e-mail me privately. Where do you live? Again welcome to the group and our little family. I hope you can get some relief soon. in Suffolk

On 7 Messenger: Make free PC-to-PC calls to your friends overseas.

[Guest guest]

Hi , Thankyou for your reply and understanding. The botox thing was a concern when l began to research it on early findings, but nothing that l have found shows any direct link to surgery problems. One can only hope now that l have done it. I also consulted two specialists about it here in Aust, they both felt it was a great option with no detrimental effect. Who knows??? If you know different please let me know as as patients sometimes l think we know more then the docs. As far as the chest pain, my e shows there is no muscular movement at all only that there is the constriction at the base. So how could l be having spasms?? My specialist feels it may be nerve spasms, but it sounds the same as you where l also do the gassy drink, water at varying temps, eating and finally now next is to take medication. As l am from Aust our medicines are not known by the same name, but this medicine is placed under the

tongue and used for angina. Let's hope l have success like yourself. With the original op l was 22 and now am 31, what about yourself? My surgery was performed here in Australia, Melbourne by supposedly one of our best, Prof Malclom . With all the complications l experienced (and continue to experience) l can not praise him too highly, though l am sure he has helped many along the way. Thanx for lending me an ear, take care JulsRICHARD <cynmark24@...> wrote: Hi Juls & welcome to our group! Since the s are about to start, and I'm not home at the moment to watch it, I'll be the first of many you are going to hear from. You will find this to be a very lively, very supportive group, one that

shares many of the same opinions, and yet (and this is a good thing), will not be afraid to voice contrary opinions. There is only one question that you asked, but I want to make a comment first. What are you thinking about with the botox? Save it for your forehead! You are just upsetting your esophagus more by the tiny amounts of time you are buying to put off the surgery! You have to just leave it alone and address the issue that needs taking care of. Its a debatable point whether or not botox might have a negative effect on future surgeries. There are others on this board who have had multiple surgeries. You're going to hear from , one of the nicest guys around (at least until he returns to the U.S. from England). However, I can tell you that you are not going to get a surgeon or anyone else for that matter who is going to give you some

kind of warranty on your operation, whether its going to be the last time, or you are going to need another one. What is most important is that if you have already gotten a second opinion that you must have the surgery, that you have it done by the best surgeon out there. (Please take as much time as you need to explore the "files," "links," and "databases" located on the left hand side of this window. There is more information to be had there, than perhaps any doctor could provide you. You just don't know if there will be another surgery (after this), but the quality of the surgeon might be an indicator if you will need another one or not. As you said, your stay in the hospital was not the norm for this operation, and you were wise to point that out to others thinking about having it done. I am curious, as will be others, how old you are, where you had the surgery

performed, and who did it? As t o the chest pain. If you reviewed the posts over the last 2 months, or clicked on some of the information files, you will see that members here all have their ways of dealing with the pain. Some much more successfully than others. Since you are in such a state, what I do bears repeating. As soon as you sense that the pain is going to begin, you must take action. That is pretty much universal. Once you are in the grip of it, it becomes much harder to get rid of. There are the "home grown" methods. I drink Diet Coke (or any carbonated beverage ASAP), but sometimes, just eating a cracker can stop it. Others drink water of varying temperatures. On a more medical level, I put a nifedipine capsule

(also known as Procardia) under my tongue, let it dissolve, then crunch it with my teeth to empty out. Usually within 3 minutes the pain is gone and does not repeat until the next time (hours, days, or weeks later). Now, don't get me wrong. Just because I can get rid of it so easily, does not lessen the impact of what it would be like if I did not have the means of dealing with it. The rare times that I have forgotten to have my nifedipine with me, and not near anything to drink, the pains have been so intense it felt like my chest would explode, or like I was having a heart atttack (though I knew I wasn't). Juls, I am also curious about the knowledge of your gastroenterologist, in that you are suffering so much chest pain from the esophageal spasms, and yet he did not make any suggestions to you as to

how to handle it? Did you ask him (her) about it? I hope that you are not offended by the directness of some of my questions, but when you are not face to face, you just try the best you can to get to the answers, and perhaps if there is something along the way that just does not sound right. Everyone on this board is here to help you (especially if the s get boring, though I'm rooting for Jon to bring the house down!). So, please check out the references I gave you, and check back here for others to also respond (and stay off the botox). >> Hi everyone,> > I am a new member and amazed and excited to see there are others > going through the same things l do (not that l wish

this condition > on anyone, but there is worse).> A little into my background, l was diagnosed over 10 years ago. > Finding it was getting worse l underwent 2 dilatations, with no > change. Then finally after nothing would go down l was operated on > in 1998, Hellers myotomy and nissen fundiplication. Unfortunately > this resulted in a 2 month stay in hospital and several drain tubes > for about two years, as l ended up having a perforation. Keeping in mind anyone thinking of operating, what happened to me is a rare > occurance, but life was hell for a while there, though there was > still problems with swallowing the positive was food was passing > with fluid.> Now here l am again 2006 delaying another operation as l am > having problems all over again. I am about to have my third round > of botox, with the first course lasting about

2-3 months, then the > second only lasting 1 month. Anything to delay the > operation.....Basically l am after advice from anyone about the > chest pain that can come on at any time and bring me to my knees for a number of hours, and really to hear if others have had to repeat operations. Then how am l to know that it will not happen again.....> > Looking forward to hearing from anyone with any advice, thanx> > Juls>

On 7 Desperate Housewives: Sneak peeks, recaps and more.

[Guest guest]

In a message dated 3/9/2006 6:55:59 PM Eastern Standard Time,

tasdlocke@... writes:

How long will it take me to feel better? Is it like starting

over??????????????? I need snack alternatives

Yes, start over every time you fall off the diet. That's the beauty of the

diet. Just keep going. If you yo-yo too much your body will try and wait you

out. Get some meat snacks and chop up vegetables to eat (celery, peppers,

carrots, etc). Have a container of hard boiled eggs, etc. Get rid of all of

those poison avoid foods. I gave away four boxes of food when I started.

[Guest guest]

I am trying to lose 85lbs so how does that work????

The ER4YT diet is a diet for you to regain and maintain your health. The

weight loss is a byproduct from being healthy. Get well and you'll lose weight

(and not gain it back).

[Guest guest]

le,

This helps you to remember. It may be over tomorrow or last 2 or 3 days getting

better each day. Don't worry or even feel guilty. Get back with what you've been

enjoying and you know you are doing good with.

T'he bad habits get broken with time and in the meantime, remembering this will

help you to bring them about faster. When I get off Arti likes to come calling

with joints in my thumb area and back swelling. That's a good reminder for me.

also.

HELP!!!

Okay so I have been on this diet 7 days. I lost 3 pounds. I felt great....I

opened my fridge and it happened. GIRL SCOUT COOKIES,POP, CHEETOS,FUNYUNS,

CHOCOLATE MILK....... IT was like a dehydrated person in a desert getting all

she could.....Before I did that I had it on my mind...I know it should not even

be in my house but with a junk food holic for a husband and 2 kids I went

nuts.....I quit buying it but i have enough to last a month....SO NOW I feel

like I am going to hurl....I want a nap and probabally gained my 3 lbs back....I

need to feel good again...How long will it take? Am I wrecked? should I still

eat my chicken breast, broccoli and aduki bean dinner or call it

quits..........How long will it take me to feel better? Is it like starting

over??????????????? I need snack alternatives...I am trying to lose 85lbs so

how does that work????

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

Bring photos to life! New PhotoMail makes sharing a breeze.

[Guest guest]

NEVER QUIT !! Take a long walk, breathe deep, drink 16 oz of water and eat your

healthy dinner.

danielle locke <tasdlocke@...> wrote:

Okay so I have been on this diet 7 days. I lost 3 pounds. I felt great....I

opened my fridge and it happened. GIRL SCOUT COOKIES,POP, CHEETOS,FUNYUNS,

CHOCOLATE MILK....... IT was like a dehydrated person in a desert getting all

she could.....Before I did that I had it on my mind...I know it should not even

be in my house but with a junk food holic for a husband and 2 kids I went

nuts.....I quit buying it but i have enough to last a month....SO NOW I feel

like I am going to hurl....I want a nap and probabally gained my 3 lbs back....I

need to feel good again...How long will it take? Am I wrecked? should I still

eat my chicken breast, broccoli and aduki bean dinner or call it

quits..........How long will it take me to feel better? Is it like starting

over??????????????? I need snack alternatives...I am trying to lose 85lbs so

how does that work????

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

Bring photos to life! New PhotoMail makes sharing a breeze.

[Guest guest]

danielle locke wrote:

> Okay so I have been on this diet 7 days. I lost 3 pounds. I felt

great....I opened my fridge and it happened. GIRL SCOUT COOKIES,POP,

CHEETOS,FUNYUNS, CHOCOLATE MILK....... IT was like a dehydrated person

in a desert getting all she could.....Before I did that I had it on my

mind...I know it should not even be in my house>

Stop right there. I suggest:

Step one:

Find yourself something called a GLAD bag, large size, pack it full of

the no-nos, and either toss it or donate it to some other poor sod to

get unhealthy. Check aLL the cupboard and now you have a clean

environment - you need this to do okay, and the rest of the family needs

to support you.

Celebrate with a nice magazine to read - or something else if you prefer

- anything other than food.

Make a list of rewards to yourself that are non-food.

Step Two:

Buy a copy of Dr Phil's Ultimate Weight loss solution.

It has the severn things you need to master (with practice) in order to

be in charge of your weight. Making a good environment is one of them

and tossing the junkfood is only one part of that - you now need to

re-stock with suitable things:-)

> but with a junk food holic for a husband and 2 kids I went nuts

They need to support you. they do not need to be unhealthy either and

can afford to get healthier habits instead.

But make really nice alternatives available to you and them - like

salads with great dressings you make, fruit, jerky, walnuts, almonds,

spiced pumpkin seeds, etc.

>How long will it take? Am I wrecked?

Do you know how to swim?

If so do you remember how long it took you to learn? You did not beat

yourself up for not getting it right first try right? This is also a

process - you practice until you get it right - just like swimming:-)

Be kind to yourslef for even trying - and keep thinking positively. What

you think about happens. If you think about a healthy body, it will

happen - if you think about eating junk food it will happen.....

so think about non-food things and healthy food things and what you WANT

to be. Then *that* will happen.

> should I still eat my chicken breast, broccoli and aduki bean dinner

or call it quits.........

Skip the beans, you already ate carbs - eat the rest.

Before you eat anything, do not think about being hungry - consider your

body that you love - that is your temple - check it out in the mirror or

look down at it - and decide what gifts you want to give it. Imagine how

it will reward you in terms of feeling good, looking good, etc. Choose

well what to offer it - and enjoy well.

That may help you eat for nutrition sake instead of to appease emotions

- the reason we go for junk. (Do something else to help the emotional

hole some other time). Mealtime (every 3 hrs) think what nutrition your

body needs - something your body would like to receive and you can enjoy

joy tasting - gift that and eat with enjoyment.

Hope that helps!

Namaste,

Irene

--

Irene de Villiers, B.Sc, AASCA, MCSSA, D.I.Hom/D.Vet.Hom.

P.O. Box 4703 Spokane WA 99220.

www.angelfire.com/fl/furryboots/clickhere.html (Veterinary Homeopath.)

Proverb:Man who say it cannot be done should not interrupt one doing it.

[Guest guest]

THANKYOU THANKYOU THANKYOU. You should smile, you just helped someone tonite.

Wonderful !!!!!!!!!!!!!!

Irene de Villiers <furryboots@...> wrote:

danielle locke wrote:

> Okay so I have been on this diet 7 days. I lost 3 pounds. I felt

great....I opened my fridge and it happened. GIRL SCOUT COOKIES,POP,

CHEETOS,FUNYUNS, CHOCOLATE MILK....... IT was like a dehydrated person

in a desert getting all she could.....Before I did that I had it on my

mind...I know it should not even be in my house>

Stop right there. I suggest:

Step one:

Find yourself something called a GLAD bag, large size, pack it full of

the no-nos, and either toss it or donate it to some other poor sod to

get unhealthy. Check aLL the cupboard and now you have a clean

environment - you need this to do okay, and the rest of the family needs

to support you.

Celebrate with a nice magazine to read - or something else if you prefer

- anything other than food.

Make a list of rewards to yourself that are non-food.

Step Two:

Buy a copy of Dr Phil's Ultimate Weight loss solution.

It has the severn things you need to master (with practice) in order to

be in charge of your weight. Making a good environment is one of them

and tossing the junkfood is only one part of that - you now need to

re-stock with suitable things:-)

> but with a junk food holic for a husband and 2 kids I went nuts

They need to support you. they do not need to be unhealthy either and

can afford to get healthier habits instead.

But make really nice alternatives available to you and them - like

salads with great dressings you make, fruit, jerky, walnuts, almonds,

spiced pumpkin seeds, etc.

>How long will it take? Am I wrecked?

Do you know how to swim?

If so do you remember how long it took you to learn? You did not beat

yourself up for not getting it right first try right? This is also a

process - you practice until you get it right - just like swimming:-)

Be kind to yourslef for even trying - and keep thinking positively. What

you think about happens. If you think about a healthy body, it will

happen - if you think about eating junk food it will happen.....

so think about non-food things and healthy food things and what you WANT

to be. Then *that* will happen.

> should I still eat my chicken breast, broccoli and aduki bean dinner

or call it quits.........

Skip the beans, you already ate carbs - eat the rest.

Before you eat anything, do not think about being hungry - consider your

body that you love - that is your temple - check it out in the mirror or

look down at it - and decide what gifts you want to give it. Imagine how

it will reward you in terms of feeling good, looking good, etc. Choose

well what to offer it - and enjoy well.

That may help you eat for nutrition sake instead of to appease emotions

- the reason we go for junk. (Do something else to help the emotional

hole some other time). Mealtime (every 3 hrs) think what nutrition your

body needs - something your body would like to receive and you can enjoy

joy tasting - gift that and eat with enjoyment.

Hope that helps!

Namaste,

Irene

--

Irene de Villiers, B.Sc, AASCA, MCSSA, D.I.Hom/D.Vet.Hom.

P.O. Box 4703 Spokane WA 99220.

www.angelfire.com/fl/furryboots/clickhere.html (Veterinary Homeopath.)

Proverb:Man who say it cannot be done should not interrupt one doing it.

[Guest guest]

danielle locke wrote:

> THANKYOU THANKYOU THANKYOU. You should smile, you just helped someone tonite.

Wonderful !!!!!!!!!!!!!!

>

Great - glad to have helped, thanks for saying so:-))

Namaste,

Irene

--

Irene de Villiers, B.Sc, AASCA, MCSSA, D.I.Hom/D.Vet.Hom.

[Guest guest]

In a message dated 4/24/2006 2:33:36 PM Pacific Daylight Time,

amycaraballo@... writes:

They put him

on Augmentin ES despite me pleading not too (it gives him horrendous

diarrhea). But they had him take Acidophillus and it kept it at bay. And

it cleared the infection really well.

Amy--

Thanks for writing--Augmentin is considered by many Docs to be the " gold

standard " when it comes to sinus infections. It is what I take. But Bri is

allergic to Penicillin. It may be time for a shot (or three) of Rocephin. We

haven't done that in a long time.

Sandi, Mom to --age 13--CVID

[Guest guest]

Ugh I totally HATE to recommend the stuff...but Sebastian had a sinus

infection that didn't respond to Omnicef which is unusual. They put him

on Augmentin ES despite me pleading not too (it gives him horrendous

diarrhea). But they had him take Acidophillus and it kept it at bay. And

it cleared the infection really well.

Don't know if that's an option or not.

Amy C.

sassykay59@... wrote:

> Hi Everyone--

> After living with Bri for 13 years, I thought I had seen most forms of

> sinus infections. But, at the moment, I'm nervous. He has had a

> sinus infection

> for seven or eight weeks!! So far, he has failed Omnicef and now

> Clindamycin--both times with a steroid burst. He has had a horrible

> cough almost the

> entire time from the drainage.

> I hate to go in this afternoon, because his usual Ped isn't there. It's

> sometimes difficult to explain to a new Doc how Bri doesn't follow the

> rules. At

> least he has the hacking cough she can listen to.

> I think it's worthwhile to do a CT now. I also think maybe a throat

> culture. If strep is coming from his sinus--Clindamycin will not

> work. He has

> actually come down with strep in his throat while already on

> Clindamycin three or

> four times.

> I can't think of anything else--any ideas???

>

>

>

> Sandi, Mom to --age 13--CVID

>

>

>

[Guest guest]

In a message dated 4/24/2006 3:07:19 PM Pacific Daylight Time,

rsknp@... writes:

What about IV antibiotics and sinus rinses???

Hi Everyone--

Thank you all for the support today. The new Ped working today didn't say

one single thing about Bri's sinuses. He did, however, offer Albuterol which

we already have. He does not have asthma at this time, this cough is

completely a result of a long sinus infection.

If he's not running a temp or too sick, I will have to wait one week to see

a different Doc. So frustrating.

Sandi, Mom to --age 13--CVID

[Guest guest]

Amy, have you tried giving him a probiotic supplement that contains more

than acidophilus? One of my favorite books is Digestive Wellness. if you go

to www.shwachmandiamondamerica.org <http://www.shwachmandiamondamerica.org/>

and click on " community " and then click on the Digestive forum, look under

good bacteria/intestinal flora-there I typed in a bunch of info fro this

book about how to choose a probiotic supplement, etc.. it also has other

ideas to help replenish the good flora in the intestines.

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

Amy

Sent: Monday, April 24, 2006 5:32 PM

Subject: Re: HELP!!!

Ugh I totally HATE to recommend the stuff...but Sebastian had a sinus

infection that didn't respond to Omnicef which is unusual. They put him

on Augmentin ES despite me pleading not too (it gives him horrendous

diarrhea). But they had him take Acidophillus and it kept it at bay. And

it cleared the infection really well.

Don't know if that's an option or not.

Amy C.

sassykay59@... wrote:

>

>

>

_____

[Guest guest]

Jacen has sinus infections that are resistant to most abxs. We use Augmentin

for oral abx use (Jacen is allergic to Clinda). But we also use a bactroban

nasal spray also. It has never cleared an infection, but it does lessen the

time he has them.

This nasal spray with the oral abx is what seems to clear the sinuses after

about 3 weeks.

Hope this helps. Jacen has not had a CT scan due to sedation issues, but my 6

year old has. All it really showed us was there was no blockage, but there was

a " mass " on his right side. Not mass like a tumor, but sinus " junk " . So, we

didn't get much help from that test.

Hope some others have better ideas!

sassykay59@... wrote:

Hi Everyone--

After living with Bri for 13 years, I thought I had seen most forms of

sinus infections. But, at the moment, I'm nervous. He has had a sinus

infection

for seven or eight weeks!! So far, he has failed Omnicef and now

Clindamycin--both times with a steroid burst. He has had a horrible cough

almost the

entire time from the drainage.

I hate to go in this afternoon, because his usual Ped isn't there. It's

sometimes difficult to explain to a new Doc how Bri doesn't follow the rules.

At

least he has the hacking cough she can listen to.

I think it's worthwhile to do a CT now. I also think maybe a throat

culture. If strep is coming from his sinus--Clindamycin will not work. He has

actually come down with strep in his throat while already on Clindamycin three

or

four times.

I can't think of anything else--any ideas???

Sandi, Mom to --age 13--CVID

[Guest guest]

What about IV antibiotics and sinus rinses???

Sue (mom to 14 yr old w CVID)

sassykay59@... wrote:

Hi Everyone--

After living with Bri for 13 years, I thought I had seen most forms of

sinus infections. But, at the moment, I'm nervous. He has had a sinus

infection

for seven or eight weeks!! So far, he has failed Omnicef and now

Clindamycin--both times with a steroid burst. He has had a horrible cough

almost the

entire time from the drainage.

I hate to go in this afternoon, because his usual Ped isn't there. It's

sometimes difficult to explain to a new Doc how Bri doesn't follow the rules.

At

least he has the hacking cough she can listen to.

I think it's worthwhile to do a CT now. I also think maybe a throat

culture. If strep is coming from his sinus--Clindamycin will not work. He has

actually come down with strep in his throat while already on Clindamycin three

or

four times.

I can't think of anything else--any ideas???

Sandi, Mom to --age 13--CVID

[Guest guest]

sassykay59@... wrote:

The new Ped working today didn't say

> one single thing about Bri's sinuses.

Sandi, I have no idea whether you can use this stuff with kids -- but

when I was having a lot of sinus infections, my ENT put me on a high

dose of guaifenesin (the ingredient in Robitussin cough syrup). He said

it moisturized the sinuses and caused the mucous to thin out and

therefore drain easier. It not only settled my sinus infections, but

now I use it to prevent them. At the first sign of stuffiness, I grab

the guaifenesin. It is now sold over-the-counter and is called: Mucinex

or Humabid -- but it is 100% guaifenesin. I notice that the label on

Mucinex says not for use in children under the age of 12. So....

It was a great help to me. But you must drink lots of liquid to help

it work.

I'm so sorry your doctor wasted your time. Makes you wonder what they

think you brought him in for????? A pat on the head?????

Hang in there. Do you have an ENT you can take him to?

In His service,

dale

In His service,

dale

[Guest guest]

Dale-good point. Our ped prescribes the guaifenesin for ph-200 mg

tablets. J refuses to swallow liquid ANYTHING and the Mucinex is too high a

dose. I start immediately with Guaifenesin and Sudafed as soon as I get a

cold or anything.sometimes it prevents a sinus infection. Here lately, I

have not had much luck. I am just finishing up 5 days of prednisone and am

on antibiotics for one :-(

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

Dale Weatherford

Sent: Monday, April 24, 2006 11:22 PM

Subject: Re: HELP!!!

sassykay59@... wrote:

The new Ped working today didn't say

> one single thing about Bri's sinuses.

Sandi, I have no idea whether you can use this stuff with kids -- but

when I was having a lot of sinus infections, my ENT put me on a high

dose of guaifenesin (the ingredient in Robitussin cough syrup). He said

it moisturized the sinuses and caused the mucous to thin out and

therefore drain easier. It not only settled my sinus infections, but

now I use it to prevent them. At the first sign of stuffiness, I grab

the guaifenesin. It is now sold over-the-counter and is called: Mucinex

or Humabid -- but it is 100% guaifenesin. I notice that the label on

Mucinex says not for use in children under the age of 12. So....

It was a great help to me. But you must drink lots of liquid to help

it work.

I'm so sorry your doctor wasted your time. Makes you wonder what they

think you brought him in for????? A pat on the head?????

Hang in there. Do you have an ENT you can take him to?

In His service,

dale

_____

[Guest guest]

Sandi,

Conner is going into surgery on Friday to try to figure out his current

sinus infection. I think he's pushing 4 months now with the same infection

and multiple antibiotics (including 20 days of IV Rocephin). Our docs think

it's likely fungal at this point.

Two things our new ENT mentioned, hypertonic saline solution sprayed into

the nose three times a day will kill a lot of bacteria and reduce swelling.

She suggested " Simply Saline " , it's a little aerosol bottle that doesn't get

contaminated with " back wash " ... yuck! She also started him on Astelin

(steroid-free - yeah!!!). She told Conner that he needs to use saline for

the rest of his life to keep bacteria under control - that went over real

well!

The other thing she had asked if his bed is against a wall that separates a

bathroom, I told her it is! She said that mold grows between bathroom walls

and we don't want his bed against that wall if he has sinus infections and

mold allergies. I had no idea! Our house is not very old, but she said

that mold will begin growing within three months of the walls being sealed.

Who knew?

Good luck, I hate seeing on-call docs, it's so hard to get them up to speed!

Let us know what you find out.

Mom to Conner (11, possible combined immune deficiency, Asperger's, mild CP,

partial seizures, asthma, GERD, Hashimoto's disease and resolved adrenal

insufficiency),

Hayden (11, unknown PID, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (11, unknown PID, asthma and mild hearing loss/unaided),

and Kelsey - (10, unknown PID, asthma)

Please visit us at www.caringbridge.org/in/connersmith

[Guest guest]

One last thing I meant to add/ask..what about a nasal spray? Both of my

boys use two nasal sprays twice a day every day...

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

_____

[Guest guest]

Sandi - does have an ENT? It sounds like the ped is in over his head

and it might be time to go to a specialist.

Ursula - mom to Macey (10,CVID) and (13)

http://members.cox.net/maceyh

Immune Deficiency Foundation http://www.primaryimmune.org

Pediatric PID email list

Modell Foundation http://jmfworld.org

[Guest guest]

In a message dated 4/24/2006 8:23:55 PM Pacific Daylight Time, dale@...

writes:

Do you have an ENT you can take him to?

____________________________________________________________________________

Hi Dale,

I have heard about Mucinex--but wasn't sure about it's use in children. I

will ask when our usual Ped is back!! That is a great idea.

I am not sure why that Ped thought I took Bri in. I think a lot of Moms

take their kids into the Peds just to get some support. That is not why we go

in. I go when I think my son is sick.

We do have an ENT whom I really like. However, he always wants to do

surgery on Bri because he feels he can help him. In reality, it was the IVIG

that

helped--not any of the surgeries. But maybe it would be a good opportunity to

discuss this with him. In retrospect, I wish that he would have caught on

that Bri's immune system was faulty. If I talk with him, at least he might

think about other patients in the future who are like Bri. Surgery is not

always

the answer for our kiddos. Repeated ENT infections over the course of years

is not normal or surgical. Okay, I'm done

Sandi, Mom to --age 13--CVID

[Guest guest]

In a message dated 4/25/2006 5:29:40 AM Pacific Daylight Time,

tripletsand1@... writes:

The other thing she had asked if his bed is against a wall that separates a

bathroom, I told her it is! She said that mold grows between bathroom walls

and we don't want his bed against that wall if he has sinus infections and

mold allergies. I had no idea! Our house is not very old, but she said

that mold will begin growing within three months of the walls being sealed.

,

Thank you so much for the head's up. Bri does sleep on the wall that is

adjacent to a bathroom. We live in an older house so that is a huge

consideration.

I believe strongly in Saline, but Bri's Ped does not. But then again, it

could be that he is thinking of non-PID kids again--not necessarily Bri. I am

going to revisit the entire idea with him.

I wanted you to know that I'll be praying for Conner--and your entire

family on Friday. We'll be at the hospital getting IVIG, so you will be on my

mind. Bri's two sinus surgeries were done at this same hospital.

How are you??

Sandi, Mom to --age 13--CVID