Re: new members.....son has Achalasia

[Guest guest]

Hi Kathy,

It's so hard to hear about this happening to children. Does he take any

vitamins? Have you tried protien shakes or ensure/boost? He might like the

chocolate versions. I don't blame Trenton for not wanting meat or

vegetables (I don't know any kids who actually enjoy vegetables:) but I do

find those to be my trouble foods too. I cannot eat meat unless it is

coated in something. Chicken nuggets seem to go down just fine- don't know

why. I can't eat raw vegetables, but I do eat plenty of well cooked veggies

and drink carrot/beet/apple juice.

There are others with children who I'm sure will connect with you. And as

for the cause, I think that is still unknown. Check the archives for info

on children to read past posts.

Kat

>From: " troy_kittykat " <troy_kittykat@...>

>Reply-achalasia

>achalasia

>Subject: new members.....son has Achalasia

>Date: Sat, 10 Apr 2004 22:39:43 -0000

>

>Hi, my name is Kathy and my husband's name is Troy. Our son's name is

>Trenton and he is 8 years old and was diagnosed with Achalasia when

>he was 6. Shortly after the diagnosis, he had a Laproscopic Heller

>Myotomy. The operation seemed to be successful in opening up his LES,

>but he still eats hardly anything. His diet consists of mostly

>cereal, poptarts, crackers, breadsticks(when we have pizza), waffles

>and pancakes, and used to eat yogurt all the time, but doesn't want

>any anymore. He wont eat any vegetables or meat(except 's

>Chicken nuggets, sometimes) It still looks like he has a hard time

>getting food down and says he's full after taking only a few bites of

>something. I worry that he is not getting the nutrition that his body

>needs. The doctor put him on Prevacid, thinking that could possibly

>help. He does say that his chest hurts sometimes and even asks to

>take his medicine. He is a tough little guy and never complains, but

>I'm just worried about him and wanting to find out if there is

>something we can do to get him to want to eat....I feel so bad and

>feel guilty eating in front of him, knowing that he doesnt enjoy

>eating. I was wondering if there is anyone out there with a child

>with this condition. If anyone could give me any helpful info, we

>would greatly appreciate it. I was very surprised to find this group.

>we had never even heard of Achalasia, until my son's diagnosis. We

>still don't know what caused him to get this.

>

>Hoping for some help,

>

>Kathy

>

>

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[Guest guest]

Kathy, I am so glad that you have heard from

a Mom who has Achalasia. I knew there were

a few, though not many on this board.

, I am so glad that Jasmine is doing so

well. That is really good news.

Kathy, I am the one in this family who has

A and have not yet had a Myotomy. I think

everyone who has, still has some difficult

eating. If Trenton has no motility in his

esophagus he needs to take a sip of water, milk,

or whatever he can drink after eat bite. This

helps to move the food down.

The chest pains do sound like the spasms to me

and I think someone has already mentioned

using water to help stop them. We are not all

alike, and things that help one will not help the

other, but they are all worth a try. When I get

a spasm, I have to gulp water...in my case it

does not matter what temperature. I can drink

room temp or ice cold. You will have to

experiment to find what works for him. My

pains start in the chest, radiate to the back

and out both arms. I have on occasion had

pain in the mouth and jaw. Here again we are

all different.

I don't remember if you said when his surgery

was. If it was recent and it is spasms he is

having, I understand they get less as time goes

on.

I too like yogurt and ice cream, but I can't eat

anything frozen and keep it down. I think it

strange that I can drink ice water to stop the

spasms but frozen desserts come back. I also

can't eat raw fruits. I even put an apple through the blender, made it mush and it still came back. Don't expect this disease to make sense cause it doesn't. We eat what we can when we can.

I hope this helps and please keep posting. We

like to keep up with our "family."

We care and hugs to you both

Maggie

Alabama

[Guest guest]

Hi Kathy

My name is , my 8 year old daughter Jasmine has had achalasia since

she was 6 also. I am sorry to hear your son has this illness, it is very

difficult to cope with especially for the mum, I truly understand your

worries!!

Jasmine has had 5 procedures, its all a long story - but she is reasonably

ok at the moment, no medication. We are actually able to live a fairly

normal life at the moment.

When Jas is really bad (only soft food teaspoon at a time sick up to 15

times a day) she actually was kept going by having a food supplement in a

milk shake, chocolate " complan " (1/2 sachet) mix with hot chocolate and milk

(use a blender or whisk) serve warm with marsh mallows or choc buttons on

top! this kept jas going, also soups and jacket potatoes.

Jas has to have little and often, we took the focus of the food, put the

telly on, dont all sit down together and try to be relaxed, we only eat a

soft diet at home, I send food to school as the cooks just dont get it!!

Good luck with it, keep us posted!

All the best - mum to Jasmine 8 yo

Tamworth

UK

new members.....son has Achalasia

> Hi, my name is Kathy and my husband's name is Troy. Our son's name is

> Trenton and he is 8 years old and was diagnosed with Achalasia when

> he was 6. Shortly after the diagnosis, he had a Laproscopic Heller

> Myotomy. The operation seemed to be successful in opening up his LES,

> but he still eats hardly anything. His diet consists of mostly

> cereal, poptarts, crackers, breadsticks(when we have pizza), waffles

> and pancakes, and used to eat yogurt all the time, but doesn't want

> any anymore. He wont eat any vegetables or meat(except 's

> Chicken nuggets, sometimes) It still looks like he has a hard time

> getting food down and says he's full after taking only a few bites of

> something. I worry that he is not getting the nutrition that his body

> needs. The doctor put him on Prevacid, thinking that could possibly

> help. He does say that his chest hurts sometimes and even asks to

> take his medicine. He is a tough little guy and never complains, but

> I'm just worried about him and wanting to find out if there is

> something we can do to get him to want to eat....I feel so bad and

> feel guilty eating in front of him, knowing that he doesnt enjoy

> eating. I was wondering if there is anyone out there with a child

> with this condition. If anyone could give me any helpful info, we

> would greatly appreciate it. I was very surprised to find this group.

> we had never even heard of Achalasia, until my son's diagnosis. We

> still don't know what caused him to get this.

>

> Hoping for some help,

>

> Kathy

>

>

>

>

>

>

>

[Guest guest]

--Hi Maggie,

Thanks for responding and thank you for the tips. I will have

Trenton try to drink some water when he has the spasms.....he had his

Heller myotomy 2 years ago and didn't complain of the chest pains

until recently, could have been having them earlier but didn't want

us to worry(he's like that)....Nice hearing from you,

Kathy

Michigan

- In achalasia , MaggWho@a... wrote:

> Kathy, I am so glad that you have heard from

> a Mom who has Achalasia. I knew there were

> a few, though not many on this board.

>

> , I am so glad that Jasmine is doing so

> well. That is really good news.

>

> Kathy, I am the one in this family who has

> A and have not yet had a Myotomy. I think

> everyone who has, still has some difficult

> eating. If Trenton has no motility in his

> esophagus he needs to take a sip of water, milk,

> or whatever he can drink after eat bite. This

> helps to move the food down.

>

> The chest pains do sound like the spasms to me

> and I think someone has already mentioned

> using water to help stop them. We are not all

> alike, and things that help one will not help the

> other, but they are all worth a try. When I get

> a spasm, I have to gulp water...in my case it

> does not matter what temperature. I can drink

> room temp or ice cold. You will have to

> experiment to find what works for him. My

> pains start in the chest, radiate to the back

> and out both arms. I have on occasion had

> pain in the mouth and jaw. Here again we are

> all different.

>

> I don't remember if you said when his surgery

> was. If it was recent and it is spasms he is

> having, I understand they get less as time goes

> on.

>

> I too like yogurt and ice cream, but I can't eat

> anything frozen and keep it down. I think it

> strange that I can drink ice water to stop the

> spasms but frozen desserts come back. I also

> can't eat raw fruits. I even put an apple through the blender,

made it mush

> and it still came back. Don't expect this disease to make sense

cause it

> doesn't. We eat what we can when we can.

>

> I hope this helps and please keep posting. We

> like to keep up with our " family. "

>

> We care and hugs to you both

> Maggie

> Alabama

[Guest guest]

-Hi ,

Glad to hear from another mother. when my son first had Achalasia, I

never heard of any other children who had this. It is good to hear

that Jasmine is doing so well. We also try to take the focus off

food, and pretty much let Trenton eat what he wants and when he

wants. Sometimes I just feel like a bad mom, especially, on the days

when all Trenton has eaten all day is poptarts, or 3 bowls of cold

cereal.

Good luck to you, also.

Kathy

Michigan,USA

-- In achalasia , " alan oliver " <alan@o...> wrote:

> Hi Kathy

>

> My name is , my 8 year old daughter Jasmine has had

achalasia since

> she was 6 also. I am sorry to hear your son has this illness, it is

very

> difficult to cope with especially for the mum, I truly understand

your

> worries!!

>

> Jasmine has had 5 procedures, its all a long story - but she is

reasonably

> ok at the moment, no medication. We are actually able to live a

fairly

> normal life at the moment.

>

> When Jas is really bad (only soft food teaspoon at a time sick up

to 15

> times a day) she actually was kept going by having a food

supplement in a

> milk shake, chocolate " complan " (1/2 sachet) mix with hot chocolate

and milk

> (use a blender or whisk) serve warm with marsh mallows or choc

buttons on

> top! this kept jas going, also soups and jacket potatoes.

> Jas has to have little and often, we took the focus of the food,

put the

> telly on, dont all sit down together and try to be relaxed, we only

eat a

> soft diet at home, I send food to school as the cooks just dont get

it!!

> Good luck with it, keep us posted!

>

> All the best - mum to Jasmine 8 yo

> Tamworth

> UK

>

>

>

>

> new members.....son has Achalasia

>

>

> > Hi, my name is Kathy and my husband's name is Troy. Our son's

name is

> > Trenton and he is 8 years old and was diagnosed with Achalasia

when

> > he was 6. Shortly after the diagnosis, he had a Laproscopic

Heller

> > Myotomy. The operation seemed to be successful in opening up

his LES,

> > but he still eats hardly anything. His diet consists of mostly

> > cereal, poptarts, crackers, breadsticks(when we have pizza),

waffles

> > and pancakes, and used to eat yogurt all the time, but doesn't

want

> > any anymore. He wont eat any vegetables or meat(except 's

> > Chicken nuggets, sometimes) It still looks like he has a hard

time

> > getting food down and says he's full after taking only a few

bites of

> > something. I worry that he is not getting the nutrition that

his body

> > needs. The doctor put him on Prevacid, thinking that could

possibly

> > help. He does say that his chest hurts sometimes and even asks

to

> > take his medicine. He is a tough little guy and never

complains, but

> > I'm just worried about him and wanting to find out if there is

> > something we can do to get him to want to eat....I feel so bad

and

> > feel guilty eating in front of him, knowing that he doesnt enjoy

> > eating. I was wondering if there is anyone out there with a

child

> > with this condition. If anyone could give me any helpful info,

we

> > would greatly appreciate it. I was very surprised to find this

group.

> > we had never even heard of Achalasia, until my son's diagnosis.

We

> > still don't know what caused him to get this.

> >

> > Hoping for some help,

> >

> > Kathy

> >

> >

> >

> >

> >

> >

> >