Re: My 12 year old son

[Guest guest]

,

My heart goes out to the kids!! I was diagnosised with Achalasia at 17. I

am now 40 so I have had some experience. I lived in Kansas City for 3 years

and my doctor there was Dr. McCallum at University of Kansas Med

Center. He knew just as much or more about Achalasia then me. I loved him!

He deals with about 50 Achalasia patients a year. That's more then most

other specialty clinic. To get in quickly you may have to see a resident or

fellow, but they will quickly call on Dr. McCallum because most have not

seen Achalasia. I believe he would be your best resource! He has been a

total blessing to me. I am now in Colorado, but I go back to Kansas City

for my checkups. Its worth the 9 hour drive to talk to someone who know and

understands what I am talking about!

Also the surgeons he works with have done numerous myotomies both lap and

full chest (thoracic)

I would say, run don't walk! He is your best resource there!

His number is 913-588-6019.

If I can help you further, please feel free to email me,

godsgirl@...

JC

My 12 year old son

> Help!! I would appreciate chatting with anyone who has any

> experience. My 12 yr old has been having swallowing difficulty for

> about 4 months now. 2 upper GI's, one edoscopy, and one motility

> study later they think it is Achalasia. We have another endoscopy

> scheduled for Monday. Doc has already suggested surgery, but not

> really explained it. My husband wants a second opinion. We live in

> the Kansas City area, and are going to the GI's at Children's Mercy.

> We have to do something fast. The poor child is down to 65 pounds at

> 4'10 " tall and has no energy or stamina.

>

> At this point, I'd just like to hear from other families about their

> experiences - also referrals for doctors.

>

> Thanks,

>

>

>

>

>

>

>

[Guest guest]

,

I simpathize with your son. I had problems when i was little. But that

was back in the 70's and they didn't know about this stuff. Now i am 31

and in a world of hurt. I had the surgery and had good luck for about 5

months. My sphincter muscle that goes to my stomach doesn't work properly

and i think thats what caused my problem. My food has to pile on top of

it to open it. Make sure his sphincter muscle that opens to his stomach

opens when it is suppose to, usually when you swallow it opens to let the

food in your stomach. Mine formed a pocket right before my stomach due to

the food sitting there and waiting to push through to my stomach. See how

many surgerys this doctor has done...and see if you can get the #'s of

people he has helped. If he is good he shouldn't mine. I am going Monday

too..tell your son that someone else is going through the same thing in

Indiana...Hopefully they will refer me to someone in Indianapolis..a good

specialist. I will have to have surgery to fix it now...Good luck and i

know about the weight and stamina..I'm 31 with threee girls single mom.

Going to school and working and tired all the time. I am 5'5 and weigh

120 right now. I usually am not allowed under that. I am actually going

to see about a B12 shot to help me keep going. I hope all goes well let

me know.

[Guest guest]

Hello ,

My son is 7 and newly diagnosed with Asp. It's very hard to share emotions with him. He moves away when I try to hug him, and NO kisses ever. He does say "I love you", but its usually after I buy him a toy etc. I get sad too. When I heard that at recess he was all alone talking to himself and playing robot by himself, I cried. It's very hard for him to make friends. The teacher knows this and is trying hard to get him some friends.

Thanks,

Cathleen

From: pussycat6969155 <pussycat6969155@...> Sent: Tue, September 14, 2010 1:45:07 PMSubject: ( ) My 12 year old son

He is in the 7th grade. I love him so much. I cant get through to him on so many levels, such as school work or his feelings or emotions about anything, if that makes sense. Ive never talked to another parent who shared Aspergers in their child, so Im basicaly just saying what is on my mind today. Any support or feed back is welcome, as I feel so sad for him and I know I shouldnt, it could be something much worse, but he's my only child and I want the best child hood for him, and its very hard to do so. Thanks for listening.

[Guest guest]

,

I totally know what you mean. My son finally made two good friends last year and even had some sleep overs. I was so excited for him and he was much happier. But this year they have drifted apart. I would over hear my son be rude to them sometimes and I would talk to him about it and say that they will get tired of it. But he just wouldn't get it and would tell me "oh, they don't care". Well now he is all alone again and my heart aches for him. He has gotten so depressed and said he wished his life would end. I worry that he will always have these problems. ne

From: pussycat6969155 <pussycat6969155@...>Subject: ( ) My 12 year old son Date: Tuesday, September 14, 2010, 4:45 PM

He is in the 7th grade. I love him so much. I cant get through to him on so many levels, such as school work or his feelings or emotions about anything, if that makes sense. Ive never talked to another parent who shared Aspergers in their child, so Im basicaly just saying what is on my mind today. Any support or feed back is welcome, as I feel so sad for him and I know I shouldnt, it could be something much worse, but he's my only child and I want the best child hood for him, and its very hard to do so. Thanks for listening.

[Guest guest]

( ) My 12 year old son

Date: Tuesday, September 14, 2010, 4:45 PM

 

He is in the 7th grade. I love him so much. I cant get through to him on so many

levels, such as school work or his feelings or emotions about anything, if that

make

[Guest guest]

Hi,

I have 4 kids - 3 boys and 1 girl.

I asked my 7th grade son with autism, " Are you happy? " He looked at me blankly

with his mouth open, and asked, " Why? " I said, " I was just curious. " He said,

" Right now? " I said, " Yes. " He said, " I'm OK. "

I asked my 6th grade son, NT, " Are you happy? " He said, " About what? " I said,

" About anything? " He said, " But what do you mean? Happy about what? " I said,

" About life. " He said, " Yes, most of the time. "

I asked my third grade daughter, " Are you happy? " She said, " Yes! " She then

smiled at me and kissed my arm - almost as if my asking her the question made

her happy.

I asked my 4 year old son, " Are you happy? " He said, " Yes.......I need somebody

to help me fix this. "

Anyway, I think as they age many boys become less equipped to handle questions

about their emotions.

I know you have only one kid and this is painful. My son with autism was always

less cuddly than my other kids, but even my second son went from a cuddle

monster to being much more reserved, especially with others around.

There is a good book called, " How to talk so your kids will listen, and how to

listen so your kids will talk. "

I know with the boys if I ask them questions about what they are doing versus

what they are feeling, I get an explosion of words.

Anyway, this in now way discounts how you feel. It is hard to feel so much love

and not feel like it is returned.

>

> He is in the 7th grade. I love him so much. I cant get through to him on so

many levels, such as school work or his feelings or emotions about anything, if

that makes sense. Ive never talked to another parent who shared Aspergers in

their child, so Im basicaly just saying what is on my mind today. Any support or

feed back is welcome, as I feel so sad for him and I know I shouldnt, it could

be something much worse, but he's my only child and I want the best child hood

for him, and its very hard to do so. Thanks for listening.

>

>

>

[Guest guest]

My 12 yrs old is about the same. Good days, bad days. Friends one day, no friends at all and feeling miserable. I do ask him if he is happy but I try to narrow it down for him. Are you having a happy childhood? Are you happy at school? etc. It helps him talk about that specific subject.

Thanks for the book suggestion. I ordered it and a few more.

Ide

From: LL <laura6307@...> Sent: Wed, September 15, 2010 8:39:03 AMSubject: ( ) Re: My 12 year old son

Hi,I have 4 kids - 3 boys and 1 girl.I asked my 7th grade son with autism, "Are you happy?" He looked at me blankly with his mouth open, and asked, "Why?" I said, "I was just curious." He said, "Right now?" I said, "Yes." He said, "I'm OK."I asked my 6th grade son, NT, "Are you happy?" He said, "About what?" I said, "About anything?" He said, "But what do you mean? Happy about what?" I said, "About life." He said, "Yes, most of the time."I asked my third grade daughter, "Are you happy?" She said, "Yes!" She then smiled at me and kissed my arm - almost as if my asking her the question made her happy.I asked my 4 year old son, "Are you happy?" He said, "Yes.......I need somebody to help me fix this."Anyway, I think as they age many boys become less equipped to handle questions about their emotions. I know you have only one kid and this is painful. My son with autism was always less cuddly than my

other kids, but even my second son went from a cuddle monster to being much more reserved, especially with others around.There is a good book called, "How to talk so your kids will listen, and how to listen so your kids will talk." I know with the boys if I ask them questions about what they are doing versus what they are feeling, I get an explosion of words.Anyway, this in now way discounts how you feel. It is hard to feel so much love and not feel like it is returned. >> He is in the 7th grade. I love him so much. I cant get through to him on so many levels, such as school work or his feelings or emotions about anything, if that makes sense. Ive never talked to another

parent who shared Aspergers in their child, so Im basicaly just saying what is on my mind today. Any support or feed back is welcome, as I feel so sad for him and I know I shouldnt, it could be something much worse, but he's my only child and I want the best child hood for him, and its very hard to do so. Thanks for listening.> > >

[Guest guest]

I think as they age they are getting more mature in their understanding of the

concept of happiness. It's not just a yes/no question, and I think it confuses

them when I ask such a general question. I think that is why they both

attempted to figure out exactly what I meant.

Breaking it down is good! For some kids using like versus happy might make more

sense - do you like history - do you like math - do you like your room....

My 7th grader had to write about somebody he admired. He wrote " Mom, " and that

he admired me because I take care of four kids. So, even if he doesn't have the

way I want him to show me he loves me, he loves me.

I remember a woman once telling me how miserable she had been because her

husband would not tell her that he loved her, and then one day she realized he

told her how much he loved her every day by going out and working a crummy job

and then coming home and building cute benches and windmills because he knew she

liked to place them around her pond.

I'm rambling, as usual....

Oh, and I just went on a bike ride with the kids. At the end of it, my 10 year

old beamed at me, leaned into me, and let ME hug HIM, LOL. He did whisper that

he loved me, though.

>

> My 12 yrs old is about the same.  Good days, bad days.  Friends one day, no

> friends at all and feeling miserable.  I do ask him if he is happy but I try

to

> narrow it down for him.  Are you having a happy childhood?  Are you happy

at

> school?  etc.  It helps him talk about that specific subject.

>

> Thanks for the book suggestion.  I ordered it and a few more.

>

> Ide

[Guest guest]

Hi Cathleen,

It was nice hearing from you. My son doesnt make friends either, its so hard for him to interact with other children. I know exactly how you feel. I cry alot too, not knowing what to do or how to make him happy without buying him stuff which is all he wants me to do, but I cant do that so he's mad at me alot. Is your son in a class with kids with similar personalities?

From: Cathleen Veloria <cathleen.veloria@...> Sent: Tue, September 14, 2010 2:16:31 PMSubject: Re: ( ) My 12 year old son

Hello ,

My son is 7 and newly diagnosed with Asp. It's very hard to share emotions with him. He moves away when I try to hug him, and NO kisses ever. He does say "I love you", but its usually after I buy him a toy etc. I get sad too. When I heard that at recess he was all alone talking to himself and playing robot by himself, I cried. It's very hard for him to make friends. The teacher knows this and is trying hard to get him some friends.

Thanks,

Cathleen

From: pussycat6969155 <pussycat6969155@...> Sent: Tue, September 14, 2010 1:45:07 PMSubject: ( ) My 12 year old son

He is in the 7th grade. I love him so much. I cant get through to him on so many levels, such as school work or his feelings or emotions about anything, if that makes sense. Ive never talked to another parent who shared Aspergers in their child, so Im basicaly just saying what is on my mind today. Any support or feed back is welcome, as I feel so sad for him and I know I shouldnt, it could be something much worse, but he's my only child and I want the best child hood for him, and its very hard to do so. Thanks for listening.

[Guest guest]

Hi ,

My son is in a private school with the general public, and is getting no special services at this time. Its a long story how it got this way, but I'm also looking at private schools but they cost so much. This school can't accomodate his needs so he suffers every day in this class. I'm a little stuck right now. How about you?

Cathleen

From: <pussycat6969155@...> Sent: Mon, September 20, 2010 1:31:46 PMSubject: Re: ( ) My 12 year old son

Hi Cathleen,

It was nice hearing from you. My son doesnt make friends either, its so hard for him to interact with other children. I know exactly how you feel. I cry alot too, not knowing what to do or how to make him happy without buying him stuff which is all he wants me to do, but I cant do that so he's mad at me alot. Is your son in a class with kids with similar personalities?

From: Cathleen Veloria <cathleen.veloria@...> Sent: Tue, September 14, 2010 2:16:31 PMSubject: Re: ( ) My 12 year old son

Hello ,

My son is 7 and newly diagnosed with Asp. It's very hard to share emotions with him. He moves away when I try to hug him, and NO kisses ever. He does say "I love you", but its usually after I buy him a toy etc. I get sad too. When I heard that at recess he was all alone talking to himself and playing robot by himself, I cried. It's very hard for him to make friends. The teacher knows this and is trying hard to get him some friends.

Thanks,

Cathleen

From: pussycat6969155 <pussycat6969155@...> Sent: Tue, September 14, 2010 1:45:07 PMSubject: ( ) My 12 year old son

He is in the 7th grade. I love him so much. I cant get through to him on so many levels, such as school work or his feelings or emotions about anything, if that makes sense. Ive never talked to another parent who shared Aspergers in their child, so Im basicaly just saying what is on my mind today. Any support or feed back is welcome, as I feel so sad for him and I know I shouldnt, it could be something much worse, but he's my only child and I want the best child hood for him, and its very hard to do so. Thanks for listening.