Re: Re: a little help, describing feelings spasms vs stuck food

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everything sounds great, we are doing alot of those things . can't eat solids at all...she's at that point.... she can have crunchy...like cheerios, corn chips. she has been unable to eat bread or crackers for 6 months or more. right now, she eats whatever when ever ( ice cream in the morning ,no problem). I kinda disagree with the reminding to eat thing..my son will play xbox for hours without a bathroom break or food, so in my house meals and snacks are important . my kids are 8 and 9 1/2 and still depend on snacks. I guess I was wondering about "pushing through" a spasm and to continue eating ( to recommend eating). I did demand water one time, because the food she ate was really thick, and it did help, but the first 3 minutes were tough. Again my goal is to have not vomit on a daily basis, for many reasons: the school nurse sucks and wants me to pick her up if she

vomits. when emily regurgs. she feels sick for 2-4 hours after ward and is unable to eat anything. then when she can eat, it is only ensure which sucks.( for about 1/2 a day) before she can eat regular again. I do get that everyday is different and do offer whole cook veggies, mushy lo mien and many crunchy treats everyday. I think I get the stop telling me to eat thing, but you have to understand, she is a child and has to be told things constantly. When she doesn't eat 5-6 times a day she feels faint. It's hard to get all the calories in for the day when she is only awake for 12 hours, and at school 8 of them. yeah we are doing the pillows at night. when we did her swallow function test, we peeked "down lower" and all the food during the 10 minutes of testing was not moving (like thick sour cream / mayo texture). then I asked for pictures and that was another 3 minutes, and still no movement. also the upper GI in April, no liquid into the stomach, but that was only about 3-5 minutes. The amount that can "go through" is definately worse since Jan..1St upper Gi where the liquid drizzled through. I guess I was not too informative, I was trying to stick to topic. of course can try to eat whatever she wants, but it never works, so we both gave up. by sticking to mostly liquid meals ( lunch and dinner) then snacks of junkfood, has gained back 4 pounds of the 10 she lost. I guess I'm focussed on fattening her up , becuase at 62 -64 she is now able to do more and happier. plus I feel better about going into surgery at a better wieght. I know atfer surgery we will be experiementing allover again. And I can't wait until summer, where I feel she can have more freedom at home to "help herself" to the kitchen, where now at school I am limited to what travels well, etc. -Dana toomuchclutter <sandycarroll@...> wrote: A spasm can feel like a Charlie Horse in your foot. There is an initial feeling that if you move just right you can change it. Then it can feel like guitar strings, spider webbed out, and somthing is twisting and pulling them together. A gentler spasm, longer lasting, can feel like when you ovulate... sometimes you notice, sometimes not. Obviously she

doesn't know that pain yet. Some people have much stronger spasms, but charlie horse seems to describe mine. If I may suggest, and of course you know your daughter better, she doesn't need to be reminded to eat. Of course depending on her temperment, if she is like us, she is SICK of people telling her to eat, maybe she will tell you that, maybe not. Watery things do not make it easier for us always, we can chew. Higher fat things are easier for most. Nachos and pizza can work while Carnation Instant Breakfast and others comes right back up. Sometimes eating heavy things like a hamburger seems like it can force the sphincter open. The liquidity or smoothness of the food doesn't seem to have an impact, the fat content is more important. Bread, pasta, fruits,

veggies, chicken are all very difficult. Crispy things like Doritos, cookies, great steak, hamburger, melted cheese things can be easier for many. Really, I assume she has, but try soda drinks or water in sips before, after and during, even if it hurts a little. If you've read some recent posts we have that discussion often. Really cold things can lock up the les... room temperature is usually best. Milk shakes and smoothies were not comfortable for me and others I've talked to, milky things are kind of icky. Fruity things are hard, they stick, even when juice only. It is very hard to explain, and she can likely tell after the first bite. We get SO tired of trying to explain to our loved ones why we can eat

pizza, not drink water, or eat a hamburger one day and not the next. Seeing that slight look of disbelief and frustration on our loved ones' faces is part of what makes this so isolating. We see them try to understand and there just isn't any logic, so we withdraw, pretend to try and just agree with what is said. I know it likely seems to you that liquified food is easier. Cookies like Vanilla Wafers were good, full fat, no reduced calorie junk for us! Most things that are comfortable to eat are not that healthy, we know and already feel guilty. Honestly, I don't see that big an advantage to blending things, didn't help me, maybe helped some. The sphincter either opens or doesn't. Doesn't seem like things really drip in. But ask her. I often just ate the pizza, just to get the feeling and then regurgitate as

soon as my esophagus was full. Liquids often came up easier. When she is in the mood, to answer, not when she is just giving youthe answer you may want to hear, give her solid things and see if they work any differently. I know it seems like blended food is easier. Perhaps after surgery or treatment, when the sphincter may be scarring or half closed blended is helpful. I haven't been there, I eat everything now. Food getting stuck is very different from a spasm, but can feel like muscles contracting before you vomit, only lower. The regurg urge is like sticking your finger in your throat, but lower and triggering the muscles. As soon as you regurg that muscle contraction or gagging is gone. No pain, unless you have eaten carrots or something

that doesn't come up easily. For a spasm, it usually happens if you haven't eaten for a while. Eating something like bread and chugging water can stop it. Then you may regurg it. The spasm is pain, not an urge like when your lower bowel is telling you time to go to the bathroom or the regurg urge. The spasm pain is right at the sternum and usually spreads from there. Unlikely she has reflux if she hasn't had surgery, so that is probably spasm pain. The foaming is usually before surgery. That is saliva mixed with air and there is a real word for it. Can be overwhelming as it needs to be eliminated or you can't talk. It increases with talking because you make more saliva. It can float above whatever else is in your esophagus. Once treated, the foaming isn't a huge issue. Foaming isn't that bad for

many, It really bothered me because I needed somewhere to get rid of it. Back to spasms.. they can happen every hour, or disappear for weeks. My son annoyed the heck out of me yesterday and instead of losing my temper, crying, and all the other supposedly inappropriate things we Moms do, I stayed firm, disciplined, no temper tantrum and no crying, but I had spasms every hour, all day long. Unusual for me, I can go weeks without spasms. I should have screamed, cried and stamped my feet to avoid the spasms I guess. The aspiration, seems like the bigger danger is aspirating our own mucus junk when we have a cold and then that cold stuff stays and we end up with pneumonia. If she is healthy, mobile, etc. I wouldn't worry about aspirating. When we mention aspirating, we mean (I think) we breath just wrong, or suck in saliva

and bits of food into our bronchial area. Then we cough. Usually no problem, just coughing spell. Worse at night, thus all the pillows at night. Get her a "boyfriend" pillow. The kind you put on the bed, then I have longer king size pillow I put long ways to start leveraging my body up, then a regular pillow at the top of that long pillow, like a T. The arms of the boyfriend pillow keep the others from shifing. I get by w/ just 2 pillows, put maybe put on more. The biggest time for aspirating is at night, but really, don't worry much about that, at her age it is likely only some coughing, and she can cough out any saliva. Sleeping in a reclilning chair is the perfect position, but we don't have one. Sandy in So Cal>> Hey there, > I'd

like to know if my daughter is having spasms or what.> > Unfortunately, age 8, describes ALL her "A" discomforts as > "the Feeling".> > spasms> nausia> burps> gas> > > > I was wondering if you guys can help explain the different > sensations you feel associated with different problems.> > AS of April 9, 2008 I blend everything, and add liquid, always > adding more water, etc.I call it the mush diet, below soft foods > just above liquid diet.> > After eating 3-4 small bites gets the feeling. Of course I let > her do whatever she needs to to relieve the discomfort. > walk around> stop eating> take cola syrup> encourage bathroom use, for going or regurg.> etc.> > It usually goes away within 10-15 minutes and she is able to eat > again. Now is that a spasm or food getting

stuck and bouncing > around???> > I believe she gets spasms during a meal and not bedtime. They are > definately linked with eating food.> > I'm concerned about pushing her to eat, if her "E" is full. It's > kinda hard to know, she's 8 years old and can get distracted by TV > and the such and forget to be eating.> > I guess can anyone tell the difference between food fullness in > the "E" and a spasm???> > Are they one and the same???> > > She has had chest pain, and we did have her heart checked out, and > everything is ok.> At first I thought heartburn due to GERD, but we all know that was > misinformation from a bad GI we were seeing.> > The pain is right at the sternum, 3-4 inches, and a crushing "like > my brother is sitting on me feeling" (he's 90 pounds). I'm assuming > that's a spasm. > > It

would just be nice to know, if I have to continue to guess, we'll > just deal with it. Also, I know after surgery ( hopefully soon) > that things can change. I've been reading every post, and it seems > that spasms and reflux can "kick-up" after surgery and seem to get > better around the 2 month mark. Obviuosly reflux due to the cutting > of the LES. Then there's foaming and gurguling in the throat and > wierd sensations of food getting stuck to deal with.> I think the most changenging hurdle for anyone with "A" is the food > getting stuck and there is a need for surgerical removal of the > obstruction. And that leads to the next dangerous thing, > aspiration , infection, etc.> > At least I feel like there is some control, since I am the one > mainly giving her food, and we communicate really well. I > guess I would like to sleep better at night. you know?>

> any ideas???> > -Dana Mills in VA>

[Guest guest]

In reference to your comment:

Oh the best part still to come, the nurse encourages to LIE DOWN and rest!!

Dana, I'd go first to the principle or maybe I wouldn't...maybe I'd go straight to the Superintendent of Education with enough info about achalasia that it'd blow his socks off. If that didn't work then I'd go to the Governor or the Attorney General's office and see what response I get from them. This nurse is a menace to your child's health and I'd make no bones about the results if this is not stopped. Having her lay down when she already can't keep things down is dangerous for her. Laws are there to protect children too.

This kind of thing makes me furious and makes me want to say "Damn! Give us the name of your child's school and these peoples names, we'll all write to them.

MaggieGet trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food.

[Guest guest]

Thanks for the post, about the nurse, she just doesn't get it. Everytime regurgs, I explain the whole thing over agian. I gave her pages explaining "A" and have been in to see her in person to explain things.( more than once) Apparently she knows one song... A kid vomits, send them home.... DUMB!!!! I even have to ask " did you take her temp.? Does she have any other syptoms? is she ok now?" the nurse doesn't even do that much before calling me.then I just ask to talk to and ask if she needs me to come in or she wants to come home etc. I have a doctors note since early April, still have issues with subs, and I encourage to walk out of class whenever she wants and we'll deal with the adults later. Can you tell I'm sick of the morans at school???? Haha! Oh the best part still to come, the nurse encourages to LIE DOWN and rest!! -Tons of fun

DANAtoomuchclutter <sandycarroll@...> wrote: You are very gracious, and it is confusing for you to be in this situation. If I may suggest a few things to help with the nurse. You might try to tell her the difference between regurg and vomiting. She is worried about germs. Regurg has no stomach acid in it, no smells, often we swallow, and apparently we have stronger muscles, can bring it up, rechew and enjoy, and swallow again. Gross to

others. It tastes exactly the same as it did when it was in your mouth. Becomes second nature, like a cow. For various reasons, if it just sits there the saliva mixes with it, gets foamy, may even get like thickened, yellowish saliva... don't confuse that with stomach bile junk. It isn't harmful to others. I think your daughter would be more comfortable if she could regurg at will. Some people here teach, and keep a large plastic cup with a lid on it, and regurg gently into that, no one notices. Maybe a pediatrician could keep a letter on file so that she is allowed that. Maybe you read the commentary a while back about when there was a substitute teacher and she was less than diplomatic with one of our young members. You are doing all you can and you

sound like you are 99% of the way to helping her. As long as you are reminding her to eat along with all the other kids that is great. We just get so sick of people's suggestions and nagging to eat, we kind of get our own schedule. Veggies were not easy for me. Unless really mushy and cooked in butter. Adding a tablespoon of butter to almost anything helped. Oatmeal cooked normally, but with extra butter was a good thing. Next time she has a barium, try asking the doctor to let her see if fizzy stuff helps. They have fizzy stuff or you can bring it. See if it goes down after they are finished w/ what they need. Seeing is believing and I'm curious if it does really work. Something else good was packaged croutons for salad.. crispy and buttery. Buttered popcorn no. For most eating and drinking stops a spasm, especially before surgery. For some reason bread helps. Almost like you need to stuff the esophagus again and reform it. Some use a really large bottle of water, which is more pressure to get the food down, like a kitchen drain, the more water will sometimes push the clog through. Maybe your daughter would like to talk to Tia, who is older and been through it all, she posts herself here every once in a while. Another girl who has been through it might help. Also, try to meet one of us, both the family and her. Helps a lot. Sandy > >> > Hey there, > > I'd like to know if my daughter is having spasms or what.> > > > Unfortunately, age 8, describes ALL her "A" discomforts as > > "the Feeling".> > > > spasms> > nausia> > burps> > gas> > > > > > > > I was wondering if you guys can help explain the different > > sensations you feel associated with different problems.> > > > AS of April 9, 2008 I blend everything, and add liquid, always > > adding more water, etc.I call it the mush diet, below soft foods > > just above liquid diet.> > > > After eating 3-4 small bites gets the feeling. Of

course I let > > her do whatever she needs to to relieve the discomfort. > > walk around> > stop eating> > take cola syrup> > encourage bathroom use, for going or regurg.> > etc.> > > > It usually goes away within 10-15 minutes and she is able to eat > > again. Now is that a spasm or food getting stuck and bouncing > > around???> > > > I believe she gets spasms during a meal and not bedtime. They are > > definately linked with eating food.> > > > I'm concerned about pushing her to eat, if her "E" is full. It's > > kinda hard to know, she's 8 years old and can get distracted by TV > > and the such and forget to be eating.> > > > I guess can anyone tell the difference between food fullness in > > the "E" and a spasm???> > > > Are they one and the

same???> > > > > > She has had chest pain, and we did have her heart checked out, and > > everything is ok.> > At first I thought heartburn due to GERD, but we all know that was > > misinformation from a bad GI we were seeing.> > > > The pain is right at the sternum, 3-4 inches, and a crushing "like > > my brother is sitting on me feeling" (he's 90 pounds). I'm assuming > > that's a spasm. > > > > It would just be nice to know, if I have to continue to guess, we'll > > just deal with it. Also, I know after surgery ( hopefully soon) > > that things can change. I've been reading every post, and it seems > > that spasms and reflux can "kick-up" after surgery and seem to get > > better around the 2 month mark. Obviuosly reflux due to the cutting > > of the LES. Then there's foaming and gurguling in the throat

and > > wierd sensations of food getting stuck to deal with.> > I think the most changenging hurdle for anyone with "A" is the food > > getting stuck and there is a need for surgerical removal of the > > obstruction. And that leads to the next dangerous thing, > > aspiration , infection, etc.> > > > At least I feel like there is some control, since I am the one > > mainly giving her food, and we communicate really well. I > > guess I would like to sleep better at night. you know?> > > > any ideas???> > > > -Dana Mills in VA> >>

[Guest guest]

Dana

I haven’t been replying much to the recent posts!! But “MORON”

doesn’t even begin to describe people like that sometimes!!!! Best of

luck to you and !!!

From:

achalasia [mailto:achalasia ] On Behalf Of DANA

MILLS

Sent: Tuesday, June 03, 2008 6:32 AM

achalasia

Subject: Re: Re: a little help, describing

" feelings " spasms vs stuck food

Thanks for the post,

about the nurse, she just doesn't get it. Everytime

regurgs, I explain the whole thing over agian. I gave her pages explaining

" A " and have been in to see her in person to explain things.( more

than once)

Apparently she knows one song... A kid vomits, send

them home.... DUMB!!!!

I even have to ask " did you take her temp.? Does she

have any other syptoms? is she ok now? " the nurse doesn't even do

that much before calling me.then I just ask to talk to and ask if she

needs me to come in or she wants to come home etc. I have a doctors note since

early April, still have issues with subs, and I encourage to walk out of

class whenever she wants and we'll deal with the adults later. Can you tell I'm

sick of the morans at school???? Haha! Oh the best part still to come,

the nurse encourages to LIE DOWN and rest!!

-Tons of fun DANA

toomuchclutter <sandycarroll@...> wrote:

You

are very gracious, and it is confusing for you to be in this situation.

If I may suggest a few things to help with the nurse. You might try to

tell her the difference between regurg and vomiting. She is worried about

germs. Regurg has no stomach acid in it, no smells, often we swallow, and

apparently we have stronger muscles, can bring it up, rechew and enjoy, and

swallow again. Gross to others. It tastes exactly the same as it

did when it was in your mouth. Becomes second nature, like a cow.

For

various reasons, if it just sits there the saliva mixes with it, gets foamy,

may even get like thickened, yellowish saliva... don't confuse that with

stomach bile junk. It isn't harmful to others.

I

think your daughter would be more comfortable if she could regurg at

will. Some people here teach, and keep a large plastic cup with a lid on

it, and regurg gently into that, no one notices. Maybe a pediatrician

could keep a letter on file so that she is allowed that. Maybe you read

the commentary a while back about when there was a substitute teacher and she

was less than diplomatic with one of our young members.

You

are doing all you can and you sound like you are 99% of the way to helping

her.

As

long as you are reminding her to eat along with all the other kids that is

great. We just get so sick of people's suggestions and nagging to eat, we

kind of get our own schedule.

Veggies

were not easy for me. Unless really mushy and cooked in butter.

Adding a tablespoon of butter to almost anything helped.

Oatmeal

cooked normally, but with extra butter was a good thing.

Next

time she has a barium, try asking the doctor to let her see if fizzy stuff

helps. They have fizzy stuff or you can bring it. See if it goes

down after they are finished w/ what they need. Seeing is believing and

I'm curious if it does really work.

Something

else good was packaged croutons for salad.. crispy and buttery. Buttered

popcorn no.

For

most eating and drinking stops a spasm, especially before surgery. For

some reason bread helps. Almost like you need to stuff the esophagus

again and reform it. Some use a really large bottle of water, which is

more pressure to get the food down, like a kitchen drain, the more water will

sometimes push the clog through.

Maybe

your daughter would like to talk to Tia, who is older and been through it all,

she posts herself here every once in a while. Another girl who has been

through it might help.

Also,

try to meet one of us, both the family and her. Helps a lot.

Sandy

> >

> > Hey there,

> > I'd like to know if my daughter is having spasms or what.

> >

> > Unfortunately, age 8, describes ALL her " A "

discomforts as

> > " the Feeling " .

> >

> > spasms

> > nausia

> > burps

> > gas

> >

> >

> >

> > I was wondering if you guys can help explain the different

> > sensations you feel associated with different problems.

> >

> > AS of April 9, 2008 I blend everything, and add liquid, always

> > adding more water, etc.I call it the mush diet, below soft foods

> > just above liquid diet.

> >

> > After eating 3-4 small bites gets the feeling. Of course I let

> > her do whatever she needs to to relieve the discomfort.

> > walk around

> > stop eating

> > take cola syrup

> > encourage bathroom use, for going or regurg.

> > etc.

> >

> > It usually goes away within 10-15 minutes and she is able to eat

> > again. Now is that a spasm or food getting stuck and bouncing

> > around???

> >

> > I believe she gets spasms during a meal and not bedtime. They are

> > definately linked with eating food.

> >

> > I'm concerned about pushing her to eat, if her " E " is full.

It's

> > kinda hard to know, she's 8 years old and can get distracted by TV

> > and the such and forget to be eating.

> >

> > I guess can anyone tell the difference between food fullness in

> > the " E " and a spasm???

> >

> > Are they one and the same???

> >

> >

> > She has had chest pain, and we did have her heart checked out, and

> > everything is ok.

> > At first I thought heartburn due to GERD, but we all know that was

> > misinformation from a bad GI we were seeing.

> >

> > The pain is right at the sternum, 3-4 inches, and a crushing

" like

> > my brother is sitting on me feeling " (he's 90 pounds). I'm

assuming

> > that's a spasm.

> >

> > It would just be nice to know, if I have to continue to guess, we'll

> > just deal with it. Also, I know after surgery ( hopefully soon)

> > that things can change. I've been reading every post, and it seems

> > that spasms and reflux can " kick-up " after surgery and seem

to get

> > better around the 2 month mark. Obviuosly reflux due to the cutting

> > of the LES. Then there's foaming and gurguling in the throat and

> > wierd sensations of food getting stuck to deal with.

> > I think the most changenging hurdle for anyone with " A " is

the food

> > getting stuck and there is a need for surgerical removal of the

> > obstruction. And that leads to the next dangerous thing,

> > aspiration , infection, etc.

> >

> > At least I feel like there is some control, since I am the one

> > mainly giving her food, and we communicate really well. I

> > guess I would like to sleep better at night. you know?

> >

> > any ideas???

> >

> > -Dana Mills in VA

> >

>

[Guest guest]

Sandy

Your posts are not boring and you are not in everyone's face! Sorry to hear about your spasms. I think your posts are great and sometimes I think about photocopying one of them and putting in my pocketbook so that when someone who doesn't "get it" starts questioning me like I am some kind of malingering weirdo, I can whip it out and say "SEE- I am not the only one!!" I think if I would have except that right now I am doing well post surgery so I don't have to explain myself anymore!!

Hope your spasms get better!!

Dawn

[Guest guest]

,

How are things going with you?

Dawn

[Guest guest]

I'm hoping for a new nurse next year, will have a 504 plan , and it sure as hell is gonna include NURSE instructions. I was about ready to pull her out of school and do home schooling, unfortunately for the past month "bright kids/honors /gifted program" testing has been going on, and would miss out on the testing...she's sure to make it, and was something she is looking forward to. I actucally talked to the principal about half days, he seemed all "we can definately take care of your child", then the nurse stuff is a disaster. we only have 6 more days of school, what could happen?? haha! i hope i didn't jinkz myself. -DanaLunaIam2@... wrote: In reference to your comment: Oh the best part still to come, the nurse encourages to LIE DOWN and rest!! Dana, I'd go first to the principle or maybe I wouldn't...maybe I'd go straight to the Superintendent of Education with enough info about achalasia that it'd blow his socks off. If that didn't work then I'd go to the Governor or the Attorney General's office and see what response

I get from them. This nurse is a menace to your child's health and I'd make no bones about the results if this is not stopped. Having her lay down when she already can't keep things down is dangerous for her. Laws are there to protect children too. This kind of thing makes me furious and makes me want to say "Damn! Give us the name of your child's school and these peoples names, we'll all write to them. Maggie Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food.

[Guest guest]

Hey Sandi, I've replied to a few before you, so Yeah next year wll be different at school, that's for sure. We did use MYLACON a lot in the beginning, now likes cola syrup, I think I'll take up with the doctor about if she needs medication for spasms, or at least get a sample to try out. I guess with a little one () I want to direct her correctly. for spasms do this, for food stuck do that. I guess it's not going to be that easy for now. we did have problems at night when was on PREVACID solutabs, headaches and stomach aches, I stopped giving to her...and of course she didn't need it, she doesn't have GERD. ( at least not yet). honestly when we started blending her dinner and sticking to crunchy and melty foods bedtime issues are almost gone. maybe only a tummy ache 1-2 a month, mostly we have " I can't fall asleep" issues( I think because it is still fairly light at 8pm, her bedtime). thanks

for your support -Danasholtsmith <holt-smith@...> wrote: Hi Dana,I have been away for the past week at the hospital and have been catching up on all the posts. I'm sorry you are having such difficulties with the school nurse. You have to wonder sometimes how nurses manage to pass their exams and get their degrees in nursing! There is always more to learn and it is a shame the nurse is so reluctant to accept and learn from the new education that she has been presented with.

Dealing with schools is difficult. I pulled my son out of school in 4th grade and home schooled because he became ill and I didn't like the way he was treated by the teacher, principal or school counselors. It wasn't achalasia, but it did turn out to be irritable bowel syndrome. Nobody believed him and it was detrimental not only to his physical health but also to his emotional and mental health and these things can affect us for life. The best medicine for him was when he was actually diagnosed and the GI doctor told him that he believed him when nobody in the school system did. (teachers, principal, counselors and school psychologist). It was a difficult time.As far as spasms are concerned, you need to remember that we are all very different and she needs to experiment and find things that work for her. It is wonderful that she has you looking for treatments and remedies that have been successful

for us here. One thing that I don't recall being suggested here and I haven't seen mentioned except maybe by notan when he mentions distention, is burping. Is able to burp? When I was in my earlier stages of achalasia and didn't even have a diagnosis yet is when my spasms were at their worst. The only thing that worked for me was to make myself burp like you do when you are a kid. The pressure and distension that occur from having to much air trapped in the stomach and esophagus is very painful and this is what I refer to as spasms.I used to get the spasms really bad at night and didn't want to wake anyone so I found a quiet spot as far away as I could go and made myself burp so the pain would go away. It would go away for a minute or two and then it would come back again so I would keep doing it smetimes for hours until it just went away and I was finally able to sleep. This was before I had found the group

here and didn't know what else to do. It still works for me when I get spasms which is not too often. I have noticed that if I don't eat for several hours I begin to get dehydrated and then I will get foam. Whenever I have foam, I get spasms and try to gurge it up. If I am unable to burp it up or gurge it up the pain will get stronger as the distention increases. This is just my little theory and remedy and it is not the same for everyone. It isn't very lady like, but sometimes all modesty goes out the window when we are in pain....like during childbirth!Good luck with the school system. I am not a fan and have had poor experiences. I think the medic alert bracelet is probably a good idea for all of our achalasia children here. Teaching to be her own advocate and standing up for herself is important as well as having a loving and supportive mom to guide her and educate her and all her teachers, nurses and

doctors along the way. We had a nurse yesterday that I was very impressed with. He gave us totally wrong information and then when we questioned him and my first thought was, how did he manage to pass his exams? But then he immediatly went off to do some research and came back and apologized and gave us the correct information. We need more healthcare professionals like this! I think I will call the hospital and commend him for this!Take care,Hugs to you and ,Sandi in No CA> > >> > > Hey there, > > > I'd like to know if my daughter is having spasms or what.> > > > > > Unfortunately, age 8, describes ALL her "A" discomforts as > > > "the Feeling".> > > > > > spasms> > > nausia> > > burps> > > gas> > > > > > > > > > > > I was wondering if you guys can help explain the different > > > sensations you feel associated with

different problems.> > > > > > AS of April 9, 2008 I blend everything, and add liquid, always > > > adding more water, etc.I call it the mush diet, below soft foods > > > just above liquid diet.> > > > > > After eating 3-4 small bites gets the feeling. Of course I let > > > her do whatever she needs to to relieve the discomfort. > > > walk around> > > stop eating> > > take cola syrup> > > encourage bathroom use, for going or regurg.> > > etc.> > > > > > It usually goes away within 10-15 minutes and she is able to eat > > > again. Now is that a spasm or food getting stuck and bouncing > > > around???> > > > > > I believe she gets spasms during a meal and not bedtime. They are > > > definately linked with

eating food.> > > > > > I'm concerned about pushing her to eat, if her "E" is full. It's > > > kinda hard to know, she's 8 years old and can get distracted by TV > > > and the such and forget to be eating.> > > > > > I guess can anyone tell the difference between food fullness in > > > the "E" and a spasm???> > > > > > Are they one and the same???> > > > > > > > > She has had chest pain, and we did have her heart checked out, and > > > everything is ok.> > > At first I thought heartburn due to GERD, but we all know that was > > > misinformation from a bad GI we were seeing.> > > > > > The pain is right at the sternum, 3-4 inches, and a crushing "like > > > my brother is sitting on me feeling" (he's 90 pounds). I'm

assuming > > > that's a spasm. > > > > > > It would just be nice to know, if I have to continue to guess, we'll > > > just deal with it. Also, I know after surgery ( hopefully soon) > > > that things can change. I've been reading every post, and it seems > > > that spasms and reflux can "kick-up" after surgery and seem to get > > > better around the 2 month mark. Obviuosly reflux due to the cutting > > > of the LES. Then there's foaming and gurguling in the throat and > > > wierd sensations of food getting stuck to deal with.> > > I think the most changenging hurdle for anyone with "A" is the food > > > getting stuck and there is a need for surgerical removal of the > > > obstruction. And that leads to the next dangerous thing, > > > aspiration , infection, etc.> > >

> > > At least I feel like there is some control, since I am the one > > > mainly giving her food, and we communicate really well. I > > > guess I would like to sleep better at night. you know?> > > > > > any ideas???> > > > > > -Dana Mills in VA> > >> >>

[Guest guest]

Sandy, about the regurg not hurting that's good to know. WE still have to use fingers at times, and sometimes mine....yuck. but it makes her feel better. I don't think has your skills yet, maybe due to a smaller "E', too. agian, the blended food has stopped the need to do this...down to about 3 regurgs a month. when eating too fast or a new food or not prepared right. Can I just strangle the nurse? it would be less effort than trying to educate her!!!!!! just kidding!! -Danatoomuchclutter <sandycarroll@...> wrote: It is sooo nice to see you here again Sandi, and how cute prays. Dana... for the nurse and school, maybe take 's barium report or picture, keep in her file and show the nurse what is happening. If you don't have a picture of her own barium swallow, borrow someone's. Maybe visually showing her will sink in. She totally doesn't understand. Also, not mentioned to you... the regurging doesn't usually hurt us like vomiting, sometimes it is involuntary, but like Sandi says we do it a lot ourselves, it is amazingly easy for most of us, similar to you making yourself burp. It isn't a huge thing, usually we disappear for a minute, regurg and come right back. Sometimes not, things stick, but for foam or saliva

buildup, it is easy. That is maybe why we eat fattier foods and avoid things like veggies, carrots, especially strawberries because of the seeds, the healthy things are a lot harder to regurg and stick easier. I've been having mild spasms for 2+ days now, maybe that is why I'm here so much? Sorry to be so boring and in everyone's face. Going to go find another project. Spasms better now. Sandy> > > >> > > > Hey there, > > > > I'd like to know if my daughter is having spasms or what.>

> > > > > > > Unfortunately, age 8, describes ALL her "A" discomforts > as > > > > "the Feeling".> > > > > > > > spasms> > > > nausia> > > > burps> > > > gas> > > > > > > > > > > > > > > > I was wondering if you guys can help explain the different > > > > sensations you feel associated with different problems.> > > > > > > > AS of April 9, 2008 I blend everything, and add liquid, always > > > > adding more water, etc.I call it the mush diet, below soft > foods > > > > just above liquid diet.> > > > > > > > After eating 3-4 small bites gets the feeling. Of course > I let > > > > her do whatever she needs to to relieve the discomfort.

> > > > walk around> > > > stop eating> > > > take cola syrup> > > > encourage bathroom use, for going or regurg.> > > > etc.> > > > > > > > It usually goes away within 10-15 minutes and she is able to > eat > > > > again. Now is that a spasm or food getting stuck and bouncing > > > > around???> > > > > > > > I believe she gets spasms during a meal and not bedtime. They > are > > > > definately linked with eating food.> > > > > > > > I'm concerned about pushing her to eat, if her "E" is full. > It's > > > > kinda hard to know, she's 8 years old and can get distracted by > TV > > > > and the such and forget to be eating.> > > > > > > > I guess can anyone tell the

difference between food fullness in > > > > the "E" and a spasm???> > > > > > > > Are they one and the same???> > > > > > > > > > > > She has had chest pain, and we did have her heart checked out, > and > > > > everything is ok.> > > > At first I thought heartburn due to GERD, but we all know that > was > > > > misinformation from a bad GI we were seeing.> > > > > > > > The pain is right at the sternum, 3-4 inches, and a > crushing "like > > > > my brother is sitting on me feeling" (he's 90 pounds). I'm > assuming > > > > that's a spasm. > > > > > > > > It would just be nice to know, if I have to continue to guess, > we'll > > > > just deal with it. Also, I know after surgery ( hopefully

soon) > > > > that things can change. I've been reading every post, and it > seems > > > > that spasms and reflux can "kick-up" after surgery and seem to > get > > > > better around the 2 month mark. Obviuosly reflux due to the > cutting > > > > of the LES. Then there's foaming and gurguling in the throat > and > > > > wierd sensations of food getting stuck to deal with.> > > > I think the most changenging hurdle for anyone with "A" is the > food > > > > getting stuck and there is a need for surgerical removal of the > > > > obstruction. And that leads to the next dangerous thing, > > > > aspiration , infection, etc.> > > > > > > > At least I feel like there is some control, since I am the one > > > > mainly giving her food, and we communicate

really well. I > > > > guess I would like to sleep better at night. you know?> > > > > > > > any ideas???> > > > > > > > -Dana Mills in VA> > > >> > >> >>