Introduction

[Guest guest]

Welcome Mimi. I, too, am a fairly new member of the group. And very

similar to you, not new to eating organic, but new to a few other NT things.

As far as the cloth diapers (congratulations, by the way) you might be

interested in another group MNNaturalMothering. Similar to the group

here, but the focus is on Mothering... feeding your family, homebirth, cloth

diapering (or even diaper free babies), vax issues, breastfeeding, etc. If

you ask about cloth diapers on that group you should get more than a few

answers.

hth,

Ann Marie

[Guest guest]

Hi

I am new to the group and have some pretty basic questions but you all seem to be very knowledgeable. My son is 4 and autistic his NT brother is 7.

In the past I have had hair mineral analysis done and he is pretty toxic especially lead. His urine analysis pointed to nutrition deficincies and pyluria also. Nutritionist prescribed a LOT of supplements covering mainly multivits,multiminerals, calcium, magnesium glycinate, similase plant enzymes, glycine, reduced L-glutathione, Co-Q 10, extra zinc and B6, iron, Kirkmans PRo Immune Support. She wanted to build him up before considering chelation. We did the epsom salts but this caused exzema so got the cream from Nutricentre.

We did the AiA big 4 and although dairy, aspamartame and MSG seemed to help gluten did not prove to make much difference. We went to see Homeopathic Doctor at the London Homeopathic Hospital who focused in on sulphation issues - unfortuantely we have not managed to kick off his treatment as we had MAJOR bowel problems (constant diarrhoea) to the point that I cut out all supplements stripped the diet down to bare basics and bowels have improved.

I have corresponded with Mandi on other sites and feel now that it is time to see Dr Heard.( Probably later this summer, )The Nutritionist is good but this work is not her main focus as she runs an Nutrition Education Centre and can be difficult to track down. We are concerned about the cost of the tests as are flat broke at the mo but feel it has to be done.

My current concern is around Pica and the garden - how do I get soil tested?

My child is of the "dirt is good and tasty " opinion and this has decreased with mineral supplements but he is still really into snails of which we have an abundnace this year. We also live near the infamous M11 link road which surprise surprise is more polluting than the M25 so the eco protesters were right. I did a home test on the water which was OK and house was redecorated late 90s so lead probably not there. so appart from the road (but petrol all lead free these days) and the garden I cannot think of other sources of lead. Any ideas????

Hope intro is not too long! Have already learnt quite a lot from group tho'.

Regards

Sports Rekindle the Rivalries. Sign up for Fantasy Football

[Guest guest]

Hello

My asd son used to have appalling pica but it has really improved

since we introduced zinc and magnesium. He still has the occasional

bite of a deodorant if we leave it out but nothing like it was. He's

never been keen on soil however. He is also very high in lead and

we had our water tested (fine), and concluded that it might be just

a very bad case of him storing up all the lead from several years.

I.e. it's not that he's exposed to huge amounts but it's the

cumulative total, now being shifted by chelation and

supplementation. Sanded wood is apparnetly a big no no for lead -

very old doors that are then stripped, removes paint but not lead

apparently.

HTH

best

Stephx

His

>

>

>

> Hi

>

> I am new to the group and have some pretty basic questions but you

all seem to be very knowledgeable. My son is 4 and autistic his NT

brother is 7.

>

> In the past I have had hair mineral analysis done and he is pretty

toxic especially lead. His urine analysis pointed to nutrition

deficincies and pyluria also. Nutritionist prescribed a LOT of

supplements covering mainly multivits,multiminerals, calcium,

magnesium glycinate, similase plant enzymes, glycine, reduced L-

glutathione, Co-Q 10, extra zinc and B6, iron, Kirkmans PRo Immune

Support. She wanted to build him up before considering chelation. We

did the epsom salts but this caused exzema so got the cream from

Nutricentre.

>

> We did the AiA big 4 and although dairy, aspamartame and MSG

seemed to help gluten did not prove to make much difference. We went

to see Homeopathic Doctor at the London Homeopathic Hospital who

focused in on sulphation issues - unfortuantely we have not managed

to kick off his treatment as we had MAJOR bowel problems (constant

diarrhoea) to the point that I cut out all supplements stripped the

diet down to bare basics and bowels have improved.

>

> I have corresponded with Mandi on other sites and feel now that it

is time to see Dr Heard.( Probably later this summer, )The

Nutritionist is good but this work is not her main focus as she runs

an Nutrition Education Centre and can be difficult to track down. We

are concerned about the cost of the tests as are flat broke at the

mo but feel it has to be done.

>

> My current concern is around Pica and the garden - how do I get

soil tested?

>

> My child is of the " dirt is good and tasty " opinion and this has

decreased with mineral supplements but he is still really into

snails of which we have an abundnace this year. We also live near

the infamous M11 link road which surprise surprise is more polluting

than the M25 so the eco protesters were right. I did a home test on

the water which was OK and house was redecorated late 90s so lead

probably not there. so appart from the road (but petrol all lead

free these days) and the garden I cannot think of other sources of

lead. Any ideas????

>

> Hope intro is not too long! Have already learnt quite a lot from

group tho'.

>

> Regards

>

>

>

>

>

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

> Sports

> Rekindle the Rivalries. Sign up for Fantasy Football

[Guest guest]

We are interested in cloth diapers. I wonder if any of you moms outthere that

have used cloth would be willing to share your opinions ondifferent

brands/styles. As I browse the internet I find so manyoptions and am more

interested in hearing personal experiences and would

appreciate any feedback!

Mimi,

I have used the " fuzzy-buns " brand of cloth diapers for my first child and the

2nd one is on the way and I plan to use them again. I would recommend them

because they're an all-in-one type diaper that you just have to stuff with a

doubler. I have used hemp doublers but am looking into something a little more

absorbent for my 2nd time around. If you have any other questions I recommend

the natural mothering website (www.naturalmotheringmn.com) for more input from

other SAHM.

Hope this helps,

Tifanie

[Guest guest]

Hi

I am new to the group and have some pretty basic questions but you all seem to be very knowledgeable. My son is 4 and autistic his NT brother is 7.

In the past I have had hair mineral analysis done and he is pretty toxic especially lead.

>>>did you ever check it against andy Cutlers Counting Rules? You can do this if it was done through Doctors Data in USA

His urine analysis pointed to nutrition deficincies and pyluria also. Nutritionist prescribed a LOT of supplements covering mainly multivits,multiminerals, calcium, magnesium glycinate, similase plant enzymes, glycine, reduced L-glutathione, Co-Q 10, extra zinc and B6, iron, Kirkmans PRo Immune Support. She wanted to build him up before considering chelation. We did the epsom salts but this caused exzema so got the cream from Nutricentre.

>>>Sounds reasonable. I much prefer Houston Enzymes over other brands

We did the AiA big 4 and although dairy, aspamartame and MSG seemed to help gluten did not prove to make much difference.

>>Same here

We went to see Homeopathic Doctor at the London Homeopathic Hospital who focused in on sulphation issues - unfortuantely we have not managed to kick off his treatment as we had MAJOR bowel problems (constant diarrhoea) to the point that I cut out all supplements stripped the diet down to bare basics and bowels have improved.

>>>Congrats for sorting it

I have corresponded with Mandi on other sites and feel now that it is time to see Dr Heard.( Probably later this summer, )The Nutritionist is good but this work is not her main focus as she runs an Nutrition Education Centre and can be difficult to track down. We are concerned about the cost of the tests as are flat broke at the mo but feel it has to be done.

>>>Do you have a Pediatrician that would refer you there and or a GP to support you? I am going through the process now of trying to obtain NHS funding. The Breakspear are making the application on behalf. I'll let you know when I have any news.

My current concern is around Pica and the garden - how do I get soil tested?

>>>Don;t know sorry

My child is of the "dirt is good and tasty " opinion and this has decreased with mineral supplements but he is still really into snails of which we have an abundnace this year.

>>Sam used to be partial to giant slugs, of which we have many - yukkydo!

We also live near the infamous M11 link road which surprise surprise is more polluting than the M25 so the eco protesters were right. I did a home test on the water which was OK and house was redecorated late 90s so lead probably not there. so appart from the road (but petrol all lead free these days) and the garden I cannot think of other sources of lead. Any ideas????

>>Could be just a general inability to detox and picking things up from environment which he is unable to dump? Do you have plastic blinds?

Hope intro is not too long! Have already learnt quite a lot from group tho'.

>>No intro is too long here

Mandi x

[Guest guest]

Hi

ERRR no what is that? The tests were done at IWDL which might be part of Great Plains

>>>EXCELLENT - IWDL USE DOCTORS DATA

I will post the rules for you to check. More info on it here

http://home.earthlink.net/~moriam/

ARe they more reasonable than Biocare and Kirkmans?

>>YES - there is a telephone number on the US website for Scotland who keep UK supplies. They are very helpful.

BTW - I spoke to them today for some NF. I told them they are the only people I have to ring for orders - everything esle I do on line. Spoke to MD - he says they will get them sorted on the website very soon That will make checking prices and ordering easier. This is US site

www.houstonni.com

Do you have plastic blinds? NO, but we do have stripped floors and doors. Are there any problems with carpets - he has chewed carpet underlay in the past,,,,

>>>Stripped wood previously painted with Lead based paint will retain the Lead after stripping. You can get some Lead tes check kits but I forget where from, maybe USA

Carpets are full of antimony and arsenic - ist part of the fire retardent chemicals. We dont; have any carpets anymore, msotly tiles now and lamniate in our room but not Sams, he has tiles.

Mandi x

PS I can help with the rules if you like - can you scan the results in and send them as attachment or upload them to the files here at the group

[Guest guest]

Mum231ASD@... wrote:

>>>did you ever check it against andy Cutlers Counting Rules? You can do this if it was done through Doctors Data in USA

ERRR no what is that? The tests were done at IWDL which might be part of Great Plains

>>>Sounds reasonable. I much prefer Houston Enzymes over other brands

ARe they more reasonable than Biocare and Kirkmans?

I>>>Do you have a Pediatrician that would refer you there and or a GP to support you? I am going through the process now of trying to obtain NHS funding. The Breakspear are making the application on behalf. I'll let you know when I have any news.

Very interested

Do you have plastic blinds? NO, but we do have stripped floors and doors. Are there any problems with carpets - he has chewed carpet underlay in the past,,,,

Mandi x

__________________________________________________

[Guest guest]

Hi Joe

suppose that my next step is to consider a hair mineral analysis test (think that’s right) to look at any levels that need correcting.

Does anyone have any experience of this and is it worth doing?

>>>Yes and YES! I will send you an attachment about how and why with links to more info

Oh, and we live in Manchester.

>>>We have list mates in Manchester

What is going on in Scotland in October? Love being nosey and any trip north of the border is always attractive to me. Just back from Linlithgow :0)

>>>Whats going on is the best gathering of of peeps ever seen in UK or Europe

Lorene (who is on this list) and the folks at Action Against Autism have done a fantatsic job - more info on their site here

http://www.actagainstautism.org.uk/

You must come! Get your ticket quick - I am confident it will sell out!!

While you are there - consider joining and supporting them in the great work they do and have been doing for ages

Glad to have found you all, thanks Mandi!

>>>Glad you made it - check out the files section, Theresa (over in Netherlands) has put some great stuff in there

Mandi in Dorset UKWife to (Self Dx AS), Tom 10 NT, Joe 9 NT, Sam 8, 47XYY, Autism, Heavy Metal Toxicity and possible Seizure Disorder, cute as can be

[Guest guest]

Hello all,

I am Joe, the proud mother of a nearly ten

year old with ‘highly likely’ Aspergers (awaiting the actual

diagnosis in November).

We had the Sunderland urine test done and

my son is now on the GFCF diet, with Houston’s

enzymes for phenols and any infractions. Apples etc keep him hyped up and his

mind going in circles so the diet and the enzymes help with this.

On the advice of his nutritionist he takes

a daily vitamin/mineral supplement, EFAs and probiotics.

I suppose that my next step is to consider

a hair mineral analysis test (think that’s right) to look at any levels

that need correcting.

Does anyone have any experience of this

and is it worth doing?

Oh, and we live in Manchester.

What is going on in Scotland in

October? Love being nosey and any trip north of the border is always attractive

to me. Just back from Linlithgow :0)

Glad to have found you all, thanks Mandi!

Regards,

Joe

[Guest guest]

At 01:01 PM 7/6/2005, you wrote:

>Hi everyone! My name is ...some of you may know me on the Perfume

>of Life forum as VelvetSky2. I'm very pleased to be here, and I want

>to thank Anya for accepting my request. I'm looking forward to

>learning from, and sharing with, all of my fellow fragrance lovers.

>In the past few years, I've been moving away from wearing traditional

>perfumes and toward perfume oils and solids. My love of hand-blended

>fragrances continues to grow, and I hope to find more sources and tips

>through this forum.

Hi :

Glad to see you here. I'm getting around to welcoming the POL members, and

say a big hi.

Can you tell us what your inspiration, book, teacher, or person who got you

into blending? Blending with oils and making solids is very rewarding, but

sometimes sourcing little compacts or containers is a hassle -- where do

you get yours?

Anya

http://.com

The premier site on the Web to discover the beauty of Natural Perfume

" The Age of the Foodie is passé. It is now the Age of the Scentie. "

[Guest guest]

Missy, first off I am sorry to hear that has this disease. You have found a great place for information and support. There are a few in the group that also have kids with this disease. Please feel free to ask any question you might have and we will try and guide you as best we can. I hope that she does well with the surgery. Please keep us posted on her progress. There is a bunch of information on the group site so take some time and look at the site. I would also suggest you try and read some of the old post. Where are you located at? I hope everything else is well with you and your family and I will be praying that all goes well with the surgery.

in Suffolk

[Guest guest]

Helly Missy:

Welcome to the group. Although I am SOOO sorry your daughter is

suffering with this disease, I am really glad you found us. This

group is so supportive and will offer lots of good advice.

Where are you from? Carolyn .. mother of Cameron .. has just been

down this road and, I know she will offer alot of valuable insight

and assistance for you. It is different when it is a child.

Please give us more details...

Where do you live?

Who is your doctor?

Who is your surgeon?

Has your surgeon treated ACHALASIA before (this is important)

Please feel free to ask question, cry on our sholder, and just

generally vent. This is a group that understands.

Kathie in Pittsburgh

> daughter was diagnosed with achalasia last week. She has

> suffered with a nocturnal cough for about 2 1/2 years. Lots of

vomiting,

> Missy( 11, achalasia)

>

>

>

>

> --

[Guest guest]

Thanks for the welcome. We are from Eden Prairie, Minnesota, a suburb of

Minneapolis.

Missy

m4myjn5@... wrote:

> Missy, first off I am sorry to hear that has this disease. You

> have

> found a great place for information and support. There are a few in the

> group that also have kids with this disease. Please feel free to ask any

> question you might have and we will try and guide you as best we can. I

> hope that

> she does well with the surgery. Please keep us posted on her progress.

> There is a bunch of information on the group site so take some time and

> look at

> the site. I would also suggest you try and read some of the old post.

> Where

> are you located at? I hope everything else is well with you and your

> family

> and I will be praying that all goes well with the surgery.

>

> in Suffolk

>

>

--

[Guest guest]

Thanks Kathie. Of course, we aren't happy she has this, but we have some

relief that we at least have an answer.

We live in Eden Prairie, MN. We've been here for about 6 years. We're

originally from south-east Ohio, Marietta. We were about 2 hours from

Pittsburgh. Kris's GI doctor is Dr. Ferrenci. We loved him. He was so

good with her. After the last two years, she had really started to

dislike doctors. She was very comfortable with him. Of course, children

is his specialty. Our surgeon is Dr. Wayhoff, a pediatric surgeon. Yes,

he has treated achalasia before. Both doctors have treated achalasia

before.

Missy

zekenoahme wrote:

> Helly Missy:

> Welcome to the group. Although I am SOOO sorry your daughter is

> suffering with this disease, I am really glad you found us. This

> group is so supportive and will offer lots of good advice.

>

> Where are you from? Carolyn .. mother of Cameron .. has just been

> down this road and, I know she will offer alot of valuable insight

> and assistance for you. It is different when it is a child.

>

> Please give us more details...

> Where do you live?

> Who is your doctor?

> Who is your surgeon?

> Has your surgeon treated ACHALASIA before (this is important)

>

> Please feel free to ask question, cry on our sholder, and just

> generally vent. This is a group that understands.

>

> Kathie in Pittsburgh

>

> > daughter was diagnosed with achalasia last week. She has

> > suffered with a nocturnal cough for about 2 1/2 years. Lots of

> vomiting,

> > Missy( 11, achalasia)

> >

> >

> >

> >

> > --

>

>

>

>

>

[Guest guest]

Welcome Missy,

So sorry to hear your daughter has achalasia. Welcome to our board.

You might discover we have some consistent advice, so let me be the

first. You didn't mention which doctor was doing the surgery. I

think I'm speaking for all of us, we are absolutely obsessive about

the experience level of the surgeon. For Carolyn, she had a

pediatric surgeon and another surgeon experienced in the myotomy.

The experience level is key to the long term success of the surgery.

It would be very unusual if a pediatric surgeon had done many of

these surgeries. If the wrap is too tight or too loose it can cause

long term problems and the length and location of the cut is

extremely important.

Perhaps your daughter hasn't told you but we look like we are

vomiting, but it is really regurgitation. If we use the term vomit

with doctors they react totally differently than if we say

regurgitation. It is similar to Eskimos having over 200 different

words to describe snow and most of us have only 5 words for

differences in snow. When we regurg, the food hasn't made it to the

stomach, so there aren't any stomach acids mixed in, it is only food

and saliva. This is the gross part, if we regurg and don't spit it

out, we just rechew and try again. The redness and irritation in the

esophagus is from food sitting there and deteriorating. It is the

exact opposite of reflux, which irritates the esophagus with acid.

In reflux the sphincter stays open or opens too easily. For

achalasia the sphincter won't open, therefore the acids don't come up.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search & DB=pubmed

Above is my favorite link to gather information about achalasia. It

is a summary of all the medical articles written. It is very current

and up to date... in fact be careful of the dates of the articles

because botox is recommended more highly in the late 90's and even

early 2000's. There are thousands of articles about achalasia in

there.

It is also a good place to research your doctor. YOu probably

already have an excellent doctor, but put in his/her names and you

should see their names, maybe not about achalasia, but almost without

exception the doctors and surgeons we have had success with are

published and at the top of their field.

A myotomy can be redone and corrected, but the first shot at it is by

far the most important. It is perhaps like trying to reverse a

vasectomy to go back to a myotomy and redo it and make any changes.

The key is that achalasia is very rare and you should, (probably

already have) asked very specific questions about the experience

level of your daughter's doctors. Because it is a rare disease, all

doctors are very eager to work on us, we are popular and phone calls

are returned. It isn't like an appendectomy where we sit in waiting

rooms.

To be honest, I wouldn't overly obsess about the food she eats before

surgery. I think they have to clean out our esophagus anyway and

have to keep it clean from saliva during surgery. IF the food gets

to her stomach she is as normal as you.

I'm the nag here and much of what I say I've said lots of times

before. I hope you understand I'm not trying to lecture you, but

perhaps you weren't aware of the rarity of her disease.

Please let us know what medical center you are visiting and your

location and doctors' names. Many of the same doctors keep

reappearing here.

Sandy in So Cal

> Hi all. I thought I would take a moment to introduce myself. I'm

Missy,

> my daughter was diagnosed with achalasia last week. She has

> suffered with a nocturnal cough for about 2 1/2 years. Lots of

vomiting,

> pressure/pain in the chest, gurgling noises at night, tons of chest

colds

> forever it seems like. We have been to her pediatrician countless

times

> and since the nocturnal cough started we have been to a

pulmonolgist and

> ENT. She has had every test under the sun done and all of them were

> normal. We went to a pediatric GI a week ago and he ordered a CT

scan of

> her abdomen and chest. The radiologist saw food setting in her

esophugus,

> although she had not eaten since the night before. So, they

immediately

> did a upper GI, I think that's what it was. She had to swallow the

barium

> and the doctor watched it on the screen. The two doctors talked

and we

> decided to have an endoscopy this past Thursday to find out what was

> causing the blockage. At that point, they had a pretty good idea,

but

> wanted to confirm it. After the endoscopy, the doctor told us our

options

> and we decided surgery was our best option. So, goes in for

> surgery this coming Wednesday, Heller myotomy with fundo. Her

father and

> I decided not to do the monometry? because she is 11 and I don't

think she

> would have done well with it. Both the pediatric GI and the surgeon

> agreed. We believe with what they have seen and her symptoms, it is

> Achalasia. She is currently on a liquid diet, which as you all

probably

> know is oh so much fun. She is very excited to have the surgery

done. We

> had taken her off all milk prodcuts because whenever she had milk,

she

> would vomit, have a fever the next day, and just generally be

sicker than

> a dog. Since last Thursday, she has been on liquid/soft foods and

has had

> milk products and is doing great! She has this huge list of foods

she

> wants to eat when the surgery is over. She is sleeping better at

night.

> She's not vomiting at night. She is a different girl.

>

> I'm sorry for the book, but I haven't had anyone to talk to about

this.

>

> Missy( 11, achalasia)

>

>

>

>

> --

[Guest guest]

Dear Missy,

I see you are in MN so you have lots of choices of places to go. I'm

going to nag again....I nag once then drop it if you choose a path

different from my nag. I reread your post and noticed you didn't

have a manometry. Won't fool you, it isn't pleasant, but it is the

best way to truly confirm the diagnosis, otherwise it could be other

strictures or even a growth. Now, I'm going to be blunt, if you gi

and the surgeon didn't insist on it I'd talk to more doctors. REally

the manometry is the gold standard. We did have a discussion about 6

months ago and there were a few that didn't have manometries, can't

remember who they were, but I'd guess 95% of us have had them, if not

several of them. There are stories of them being done wrong and

there are not set standards for how they are done, therefore each

doctor usually wants their favorite doctor to do them so they know

how the test was done. If you think you might go to a different

place, then wait to have the manometry done at that facility.

The manometry measures the pressure all along the esophagus, which I

assume gives the surgeon a key as to how far to cut. It also

measures the lower les pressure, also important for the surgeon to

know.

I'm sure you know this, but if you don't make the manometry a big

deal, then your daughter won't either. It isn't pleasant, but

frankly worse things have been done. Getting the novacaine stuff in

the nose first is the most uncomfortable, one the tube is in it isn't

that bad. She will gag and regurg but it depends on the doctor doing

it.

I know you already have the appointments, but please look at our

doctor links, even if not in your area and call some of them. The

achalasia world of doctors is pretty small and they all know each

other. They won't bad mouth each other, but see what they say. I'm

guessing Carolyn's doctors would be happy to help.

There, I'm done nagging. We will support any choices you make,

please come here to think out loud.

Sandy

> > > daughter was diagnosed with achalasia last week. She

has

> > > suffered with a nocturnal cough for about 2 1/2 years. Lots of

> > vomiting,

> > > Missy( 11, achalasia)

> > >

> > >

> > >

> > >

> > > --

> >

> >

> >

> >

> >

[Guest guest]

>

> I'm sorry for the book, but I haven't had anyone to talk to about

this.

>

> Missy( 11, achalasia)

Hi Missy - oh please don't be sorry. We all write our books every now

and then and that's what we are here for. You've already received lots

of good advice so I'll refrain from that but I wanted to write because

I was also diagnosed as a teen and I'd like to offer you some hope. I

was about 12 when I started having problems and after 3 frustrating

years of 'she's just a high strung girl... puberty... and the like

finally had a doctor diagnose me correctly with A. Joining this group

is already a big step in the right direction. I'm now 37 and after 20

years of having A - I've learned so much here - much more than I have

from any doctors.

I wanted to write and tell you that I've had A for over 20 years, I'm

16 years post-op (open Heller - not available lap in those days) and I

live pretty normally. Your daughter will always have to pay attention

to what she eats, swallowing carefully and with lots of water but there

is a pretty normal life ahead. She will always have A but it doesn't

have to 'have' her. I expect to continue on with my normal life - just

with lots of water around all the time! :-)

Good luck to you both. Please tell her we all say HI and that I will be

thinking of her. I can relate - I was on a liquid diet for a month

before my first dilation - spaghettios work really well in the blender

by the way. Invite her in sometime. Most of us are adults but she may

need and/or like to know that she's not alone and she's not a 'freak'.

God knows that's a tough enough age as is, let alone having to deal

with something like this.

Happy Swallowing!

- in Va.

[Guest guest]

<<<Your daughter will always have to pay attention

> to what she eats, swallowing carefully and with lots of water but there

> is a pretty normal life ahead. She will always have A but it doesn't

> have to 'have' her. I expect to continue on with my normal life - just

> with lots of water around all the time! :->>>

Thanks for the encouragement. I guess things like this are hard to hear.

My wish is for her to have this surgery and to not have to worry about it

again. I guess maybe that is not thinking realistically. The doctors

have both told me what to expect after, but I still have that wishful

thinking. I have epilepsy, so I do know what it's like to have something

that will never go away. As a parent, you never want your child to deal

with something like that. I'm much more bummed about this than my husband

is. I'm not sure why.

Thanks again,

Missy

--

[Guest guest]

I have epilepsy, so I do know what it's like to have something

> that will never go away. As a parent, you never want your child to

deal

> with something like that. I'm much more bummed about this than my

husband

> is. I'm not sure why.

>

> Thanks again,

> Missy

Hi Missy - in an obscure way, your daughter is lucky because you know

what it's like to have a chronic condition. A is like epilepsy in

that it does not have to control your life and you can lead a fairly

normal life but you will always have to pay attention and be diligent

or it will come back and bite you in the backside! I'm sure she will

benefit from your experiences and understanding. That's probably why

this is bugging you more than hubby - you know what it's like to have

something you'll have to deal with your whole life.

As a mom, you have my total sympathy and understanding - while there

has never been a direct genetic link with A - one of my biggest fears

is that one of my daughters will develop it at a later time. I've

been fortunate to have 2 very healthy children.

When's her surgery? Keep us posted

Happy Swallowing!

in Va.

[Guest guest]

<<I reread your post and noticed you didn't

have a manometry. Won't fool you, it isn't pleasant, but it is the

best way to truly confirm the diagnosis, otherwise it could be other

strictures or even a growth.>>

I'm sure you are just concerned about someone who has this condition. We

decided, my husband and I, to not do the manometry. She has been through

SO many tests the past 2 years and what we saw convinced us. The doctors

did tell us that the manometry was the " test " for diagnosing this

condition, but that they were both convinced it was achalasia. They said

if we chose not do have the other test done, they would be fine continuing

with the surgery.

Thank you for caring about my daughter.

Missy

(11, achalasia)

toomuchclutter wrote:

[Guest guest]

Missy, I wouldn't worry too much about whether or not she had the manometry done.

The bird's beak tells the story -- and if she also had uncoordinated peristalsis during the barium swallow, that would also help confirm it. (When I'm lying down during a barium swallow, the technician can watch each glob of barium just "ping pong" around in my esophagus, b/c the contractions aren't synchronized to go from point A (mouth) to point F (stomach) in a normal ABCDEF fashion. Instead, I'll get something like A C F E F B C B C D A C B... and eventually the technician gets bored and tips the machine so I'm mostly vertical so that gravity can take over.)

Good luck with the surgery -- we'll all be thinking of you guys!Debbi in Michigan

I'm sure you are just concerned about someone who has this condition. Wedecided, my husband and I, to not do the manometry. She has been throughSO many tests the past 2 years and what we saw convinced us. The doctorsdid tell us that the manometry was the "test" for diagnosing thiscondition, but that they were both convinced it was achalasia. They saidif we chose not do have the other test done, they would be fine continuingwith the surgery.Thank you for caring about my daughter.Missy(11, achalasia)

[Guest guest]

Hello Missy

and !

Welcome to

our group! I’m so glad that you have found some docs who are able to

help you. Make sure they have a tonne of pediatric GI experience, or at least

GREAT ( not just ok) results with whom they have already dealt with in your

daughters age group. If you have any trouble, email Carolyn!! She has been

through EXACTLY what you are going through since November I believe.

About ’s

manometry….I’d be a little worried if they did not feel that she

really needed this done. The test is NOT painful. (or at least SHOULD NOT be,

if administered by a caring professional with a gentle hand.) Ask Cameron. He’s

14 and had one done just a few months ago it seems. You don’t want to go

through all this work and find out it could be something else ALSO/OR

achalasia. Do some reading. You’ll know whats best for her. Carolyn….are

you out there…?

Again,

welcome to the group! I hope you find lots of helpful info for your daughter

to make her/your J life a little easier!

Hugs,

in BC

From:

achalasia [mailto:achalasia ] On Behalf Of Missy McKibben

Sent: July 24, 2005 9:52 AM

achalasia

Subject: Introduction

Hi all. I thought I would take a moment to introduce

myself. I'm Missy,

my daughter was diagnosed with achalasia

last week. She has

suffered with a nocturnal cough for about 2 1/2

years. Lots of vomiting,

pressure/pain in the chest, gurgling noises at

night, tons of chest colds

forever it seems like. We have been to her

pediatrician countless times

and since the nocturnal cough started we have been

to a pulmonolgist and

ENT. She has had every test under the sun

done and all of them were

normal. We went to a pediatric GI a week ago

and he ordered a CT scan of

her abdomen and chest. The radiologist saw

food setting in her esophugus,

although she had not eaten since the night

before. So, they immediately

did a upper GI, I think that's what it was.

She had to swallow the barium

and the doctor watched it on the screen. The

two doctors talked and we

decided to have an endoscopy this past Thursday to

find out what was

causing the blockage. At that point, they

had a pretty good idea, but

wanted to confirm it. After the endoscopy,

the doctor told us our options

and we decided surgery was our best option.

So, goes in for

surgery this coming Wednesday, Heller myotomy with

fundo. Her father and

I decided not to do the monometry? because she is

11 and I don't think she

would have done well with it. Both the

pediatric GI and the surgeon

agreed. We believe with what they have seen

and her symptoms, it is

Achalasia. She is currently on a liquid

diet, which as you all probably

know is oh so much fun. She is very excited

to have the surgery done. We

had taken her off all milk prodcuts because

whenever she had milk, she

would vomit, have a fever the next day, and just

generally be sicker than

a dog. Since last Thursday, she has been on

liquid/soft foods and has had

milk products and is doing great! She has

this huge list of foods she

wants to eat when the surgery is over. She

is sleeping better at night.

She's not vomiting at night. She is a

different girl.

I'm sorry for the book, but I haven't had anyone

to talk to about this.

Missy( 11, achalasia)

--

[Guest guest]

Colleen,

Welcome! Welcome! Welcome! I want to welcome you to the group and say hello! My name is and I have 250 pounds to lose. I can completely understand how TOPS can become unmotivating. I don't know how much TV that you watch but you might want to check out

Celebrity Fit Club 2 on MTV. I really do enjoy the psychologist that is on there. She is really helping people deal with issues of body image.

You might want to check it out!

Blessings,

topstogoal <topstogoal@...> wrote:

My name is Colleen. I live in Idaho. I will be 47 next month. I weigh 340. I have 190-195 pounds to lose. I keep going up and down the same 10 pounds all year. This is getting very annoying now. I get down to 331 and bounce right back up to about 340.My goal is to lose 5 pounds a month. I feel it will be easier to reach this goal than 10 pounds a month... of course I would love to lose 10 pounds a month... but I need a more real goal.... the weight just does not come off like it used to when I was younger. I am trying very hard to get over this thought of I want the weight off now and trying to reprogram my mind to take it slow and steady and I will get there soon...LOLI belong to TOPS- take off pounds sensiblily I wegh in once a week, seems they do not motivate me anymore. Nice group of people, just no motivations

for me anymore. I just ordered S. food mover and his video for easy on the joints. I have not recieved them yet.I just can not seem to make myself walk on my treadmil because I get bored or go to the gym and actually use my membership, like I should and thought I would try this program. Maybe after losing some weight I will feel like going to the gym again.If the video hurts my knees, I will sit in a chair and do the upper body movements.I am anxious to get started.I just bought Dr Phill's weight loss book and he has some good ideas in there. I just recieved it and on the first part of the book.I am trying to learn to journal, schedual my days try to give more positive self talk and things like that now.Maybe by the time I get my food mover and video I will be more organized at my journaling and start putting my schedual of the days in place and actually start doing what I have written for my daily

list. I really want to change my life for good this time.I am trying anything I think will help me get to my goal of getting the weight off and getting healthier.I do not want to go on a strick diet that limits a lot of foods.I need something I can live with the rest of my life or the weight will not stay off. Been there and done that to many times.I will not be able to post all the time since I am not on the computer that much some days. I will try to post as I can.I am on the computer more in the winter when it is cold outside.Colleenhttp://silverdawnrabbitry.com__________________________________________________

[Guest guest]

Welcome Colleen! I like your goal, it seems very reasonable to me.

Can't wait to hear more from you.

christine

[Guest guest]

Thank you for the welcome .

I will have to check out Celebrity Fit Club 2. Thank you so much for

telling me about it. I will check my listings to find out when it is

on here. I am trying to work on the psychological part of this as

well. I know that is the only way I will keep it off permanantly. I

can not wait to get my order from .

Take care

Colleen

> Colleen,

> Welcome! Welcome! Welcome! I want to welcome you to the group and

say hello! My name is and I have 250 pounds to lose. I can

completely understand how TOPS can become unmotivating. I don't know

how much TV that you watch but you might want to check out

> Celebrity Fit Club 2 on MTV. I really do enjoy the psychologist

that is on there. She is really helping people deal with issues of

body image.

>

> You might want to check it out!

>

> Blessings,

>

>